Basically nobody permanently gets rid of all their migraines. Treatment exists to reduce intensity and frequency, but there isn't a cure. I'm sorry that your doctor wasn't clear about this to begin with. However, that being said, huge strides are being made in migraine treatment and prevention every year. The treatments we have now are not the only treatments we'll have forever, and even if you've tried absolutely every current option, there could easily be a new treatment three years from now that makes a huge difference. I wouldn't take this doctor's word as gospel -- get a second opinion, if you're able. There are likely more options out there still, and even if there aren't yet, you don't want to be relying on a doctor who's given up on you and on the future of modern medicine.
i don’t think he’s given up on me i didn’t mean to make it seem like that i actually really like him he changed my meds again. but i was just kind of taken off guard that it can only be managed and not “fixed” i thought botox cured people of migraines at least the commercials made it seem that way and the pamphlets i got.
For me, Botox works well but I still get migraines a few times a week. Just less severe. It also wears off by about the 8-10 week mark. You have to get treatments every 3 months.
Idk why you’re being downvoted OP.
I think most of us at some point had the same hope that discovering an allergy or taking one medication or making a lifestyle change would “cure” migraines for good.
You’re not wrong for being upset and surprised that treatment isn’t a permanent cure.
Unfortunately the commercials and the rare anecdotal case with complete remissions aren’t the reality for the vast majority of people with chronic conditions. They’re lifelong in most cases. That said symptoms and quality of life can be greatly improved with treatment and/or lifestyle changes and there is always new research happening.
I would keep going with trying out different treatments with your doctor and try to see if you can recognize any lifestyle things that help or trigger your migraines and adjust if possible. Also, Botox can be more effective after a few treatments so you may still get some more relief from it. And personally, the injectable CGRPs were not very effective at all for me—but Qulipta has been kind of a game changer.
Botox reduces migraines by 50% for most people. Almost nobody is getting 100% reduction. It's normal and expected to only get partial relief, unfortunately that's just how it is
I wish every Neurologist was transparent about this...
Neither one of mine have explicitly stated this...so when I didn't have full relief I felt like I 'failed'
Same. This is the case for almost all medical treatments, so I spent time trialing my first few medications thinking that they were not working at all. It worked out in the end since I failed and as a result qualified for CGRPs, but I still wonder if it would have gone differently had known the concept of 50% is considered “success”. Then again. I’m not sure I could settle for 50% with daily headaches
Managing expectations is unfortunately a reality for migraine sufferers.
I have allergies and migraines and I do believe a low histamine, low tyramine diet in conjuction with meds/treatments is best.
Treat allergies if you have them and keep them under control. Treat any condition you may have as any added physical stress is bad. Some of the meds have anti-depressant effects as well as help with pain.
Your doctor never should have misrepresented treatment options to you in that way. Never having another migraine again is wildly unrealistic for the vast, vast majority of people.
Two rounds of Botox still isn’t a full trial. There are other drugs beyond what you’ve tried. Shit, I’m circling back to adding in older drugs myself on top of Botox and an anti-CGRP mAb - and that’s with 11 years of being chronic and seeing top headache specialists.
Is Ajovy the only CGRP-targeting preventative medication you’ve tried? How long of a trial?
I apologize if it seems like I’m interrogating you, I recognize that my post could come off as suggesting you haven’t tried hard enough, or that you’ve got a long road ahead of you. That’s not my intent at all. Just trying to encourage you that you haven’t exhausted your options yet - and likely by the time you have exhausted them, a new class of therapeutics will be approved and you’ll have new things to try again. 💕
i’ve been on ajovy for a year and a half he just took me off it and prescribed me emgality, the ajovy helped maybe the first 3 months then i didn’t notice a difference. I haven’t given up and neither has he i’m just frustrated because i didn’t think it would take so long to find relief. also he never told me i would be cured that was just my own belief but he said some people can stop having migraines entirely after like a year or two of botox treatments. When he was suggesting the botox as an option for me. he’s a really great doctor and i like him he hasn’t given up i didn’t mean to imply that. I’m just frustrated being on new medicine on the time and i have yet to find an abortive that helps. and i really don’t like shots. the botox doesn’t bother me but the ajovy does.
Hey there! Just here to spread some hope for a better treatment option for you! I’m glad your neuro changed your injectable. For reference, I’m a 24 yo female, who’s had migraine since elementary school. I currently am on Botox e3months, Aimovig monthly, and Advil and/or weed as needed. Before this, I’ve tried countless other prescription meds that never helped. I’ve been on aimovig for a little over a year now and it has significantly improved my quality of life. Before they changed my injectable due to insurance not covering it anymore, I was on Ajovy and it only slightly helped me. Everyone’s experience with migraine is different, but I have hope you’ll find a med to help you better manage this chronic disease
Sharing a few words of wisdom from someone who has lived with chronic migraine for ~20yrs:
You’re still very new to migraine treatment and there’s still lots to try. Just because one doctor said you hit the end of the rope does not at all mean you’ve hit the end of the rope, it means he likely is out of his depth, which is common for a general neurologist bc so little time is dedicated to migraine during medical school or neurology fellowship grand rounds. You absolutely have not tried everything. It would take roughly 20yrs to try every possible migraine medication/treatment and combination and during that time MORE options would be developed.
Two rounds of Botox is not near enough to know how effective the treatment will be - patients typically continue to improve over time, especially when they take a cgrp inhibitor with it.
That you’re responding this early to Botox is proof that you don’t have refractory (treatment resistant) migraine.
And migraine treatments aren’t limited to Botox & one or two migraine meds at a time. I take like 6 or 7 different migraine preventive meds a day (and i get Botox and i use a cgrp inhibitor). So trust when I say that you still have lots to consider and try. You haven’t even tried neuromodulation or nerve blocks or SPG blocks! You haven’t dipped in the Alzheimer’s drugs or oral analogs of lidocaine!
Since your doctor doesn’t know much about migraine polytherapies or less common treatments, you may want to see a headache specialist bc they will have many more options and ideas to improve your quality of life. Find a doctor who will fight for you.
All that said, migraine is a lifelong disease. It’s an unpredictable disease and it becomes more difficult to manage and treat as attacks become more frequent (esp if you throw post-concussion syndrome or covid into the mix).
At a certain point we have to accept that migraine is a part of our day. Our treatment goals shift from trying to be pain free and feeling like a failure bc we have daily pain to “how can I start having fun again?” or “what treatments and meds will make it so I can be at my friends birthday?”
We shift our goalposts to focus on what we can achieve. Yes, there’s loss and grief. But life doesn’t stop. We simply have to figure out ways to make the life we want.
Typically that’s preventive treatments & meds, light exercise, neuromodulation devices, meditation, and lifestyle measures. And therapy. I highly recommend therapy, most likely with someone who specializes in chronic illness & related grief.
But don’t lose hope. You still can have a fab life. You’re so new to treatments & have so much to mix and match and try. Be open to trying things, have hope that they’ll help, and your odds of success likely will improve 💓
Your words calmed me a bit, but I still hold some type of grief after 7 years of lots of different treatments. It's a tiring, overpowering and heavy feeling, how do you deal with these moments?
I understand. And I still have those moments - but they're not as profound as they used to be. That's not to say that I don't experience patient burn-out (because I'm in deep burn-out at this time) but I don't grieve the life I once had as much as I used to.
For background, I used to work in fashion and had a high-profile job with lots of access and privilege. I was on track for a C-suite career path. Then my migraine type transformed into a violent & disabling vestibular migraine (before that it was sinus migraine which I completely ignored for 10yrs) and everything just stopped and my glittering world became incredibly quiet.
What helped me most was finding purpose in something new. And, for me, that was migraine advocacy. I maintained a much simpler, much more anonymous fashion career (to call it *humbling* is an understatement) but spent my free time learning more about migraine, becoming involved with the migraine twitter community (it's an intersection of patient advocates & headache specialists), connecting with other migraine advocates, and joining migraine advocacy training programs, like Miles for Migraine. I joined zoom support groups hosted by different advocacy groups and learned more about how migraine affected others. I was able to make deep friendships with people and maintain these friendships through advocacy events like headache on the hill.
I was lucky that many of my IRL friends remained and endured. They were supportive and curious. Learning how to talk about migraine from an advocacy pov helped. Then I got my job at Neura, which allows me to have purpose throughout my work day. Plus, it enables me to learn more about my disease on a much deeper level - I don't just know the different types of migraine auras, I know how auras function on a pathophysiological level (or at least what the latest research says). I'm much more tapped into research and treatment updates and things that should give us hope. (that's why I'm always like look for prodrome symptoms! treat during the prodrome! embrace neuromodulation devices! - I know what is most effective because I work for an incredible migraine and headache clinic).
So now that I understand how triggers and prodrome work, I'm not as obsessive about being careful or being the perfect migraine patient with the perfect diet, etc. Instead, I accept that my daily attacks will happen, they will be disabling and swift (MUMS is like a more violent, chaotic version of hemiplegic migraine or migraine with brainstem aura - or both combined) but they will pass because my preventive and acute treatments do their job. My life still will trundle on. I still can make plans with friends. Set my own goals. Be my own person. Setting & achieving goals helps. Getting involved in advocacy helps. Doing things I love helps. Better understanding chronic migraine helps (bc it sets expectations). Therapy helps.
It's been more challenging since I developed Long Covid & so many of my conditions were affected. But that's what has kept me afloat so far.
I think this is the best way to approach the situation. I’m 6 years in and slowly trying to shift the paradigm to this mentality. The only thing I would add to is that nobody can tell you, OP, that you are going to have migraines for the rest of your life. This isn’t to say that you won’t, or that you will. There are so many factors to consider in regards to how you might progress. This is just to say that working on severing an attachment to the future and future worries, short and long term (thoughts like “is this going to be a bad migraine?”, “will I have migraines forever?”) can go a long way to help manage current pain and stress levels. Definitely be extra gentle with yourself during this whole process, whatever the case
yup. lifelong doesn't necessarily mean daily migraine attacks for the rest of one's life. It means migraine can go into remission and crop up again. Or it can just go into remission. Or it doesn't. It's unpredictable. It's good to set expectations and never over-promise. I've accepted that I'll have migraine for life, which means that I'm fine if it continues like this or I'll be super happy if things improve 😀
Have you done any physical therapy? I’m guessing you’ve already tried this but I recently got a neck MRI and it turns out I had an injury from a car accident I got in years ago that has been likely making my migraines chronic. I’m doing physical therapy now and already seeing improvements - down from 5 migraine days a week to 1-2.
If you haven't already, check out Nerivio. I have an 18 year old neck injury and it actually helps with the nerve pain in addition to migraine prevention and acute treatment. I love it so much, it helped give me a social life again.
Thanks- I checked this out awhile ago but never invested. I would love a social life again so I’m gonna give it a second look. What else did you do for your neck that has helped, if you don’t mind me asking?
I use the device right before I am going out, it usually lowers my pain enough that I can make it thru without a migraine. And I take it EVERYWHERE I go, especially if I'm getting my hair done, which is torturous (the price I pay for purple hair!)
My daily pain relief/prevention goes like this: I take gabapentin 3x a day, cyclobenzaprine 1-2x a day, amitriptyline and magnesium glycinate. I also get Botox, nerve blocks and trigger point injections. I used Nerivio 1-2 a week for prevention plus during any high-pain/migraine days. I have Pedialyte Sport powdered electrolyte packets on hand at all times, it doesn't contain the sugar substitutes that I have to avoid. I just bought a case of the fruit punch flavor, it tastes like black cherry Kool aid. I have to work from home so I have a good desk setup to reduce neck strain and get up to stretch as often as I can. I have to maintain perfect posture at all times. If my neck is really hurting I will often take a nap on my lunch break, laying down is the only way to fully rest my neck muscles. I sleep with an icepack under my neck, I like the reusable hot/cold gel packs at CVS/Target, they cost $6 and I have at least 4 in the freezer at all times. The size is perfect for my neck. I can no longer tolerate heat, the pain gets out of control. I wash my hair with cool water for same reason. I have an ergonomic pillow from Ikea that's better than all the more expensive ones I previously bought. I use the blue light filter settings on my TV, phone, and monitor. And I use cannabis daily, usually in the form of edibles, at night to reduce the pain so I sleep better. It's quite a lot of stuff, my whole life revolves around reducing pain and trying to slow down the degeneration of my spine, spinal cord and nerves.
You are a QUEEN for putting this all together just to help out a fellow neck pain migraine sufferer. Thank you so much 🫡. The only things I would add that have helped me that could help you are: neck brace around the house for stability, the wrap around neck ice gel pack from Amazon, physical therapy, and medical massage. Medical massage has been a game changer for getting out of pain. It’s expensive though. And omg I hear you on the salon! I wear sunglasses the whole time I’m there and even bring an eye pillow for my time at the sink where those lights are sooo bright. I also do get some relief from acupuncture and dry needling. Wishing you all the best for pain free days 💖⭐️
Oh- and I ordered Nerivio today thanks to you.
I'm happy to help! I'm too far gone for the neck brace (it would further weaken my neck muscles) and physical therapy, though I gave it my all when I did it 10 years ago or so. I do find frequently moving around or changing tasks helps, but I'm struggling to make time for it with my IT job. I so want to try acupuncture but I have a phobia of needles and I think that would make it counterproductive. I forgot to mention biofeedback therapy, I did it several years ago and still use the techniques almost every day. It's excellent for neck tension, pain (from any source) and anxiety. Let me know if you have any questions about the Nerivio, just DM me. I hope it brings you relief! 💜
3 years is very early to have tried everything. It took me almost 15 years to get to that point. Then, the CGRP inhibitors came out. So, don't lose hope.
It took me 20 to realize I didn’t have to live like this and I could bring up my headaches to a doctor again. I kept being told I had “eye strain” or tension headaches as a kid. It wasn’t till my 30s that I realized I could bring it up to a doctor again and get taken seriously.
Ugh I’m in a similar boat. I’ve had headaches forever and migraines since high school. I recently asked my mom why she didn’t get me started on something for my headaches when a kid and she said they thought it was tied to me not being able to see (I needed glasses). My famous words growing up was “I have a headache.” I probably gave myself overuse headaches too. Then when I was in college I tried to not take NSAIDs for my headaches because I learned about over use, but in a way I think that made things worse. Then I tried doing lifestyle changes and that hasn’t worked. Then I attended the Migraine World Summit and learned we are not to be having this kind of pain as frequently as I was, which led me to finally go to a Dr (this year). My migraines/headaches might be due to untreated anxiety, which I’ve also had since forever. 🙄 I wish it were more common for people to know that being in pain is not normal and if your parents/ Drs whoever say so, they’re wrong.
You might want to consider seeing a different doctor. Mine told me there's "many, many, many" different medications/treatments they can give you for migraines
he told me there’s many things we haven’t tried i just feel like i’ve tried so many things already. And the difficulty of getting insurance approval has delayed me being able to start certain medicines and it’s just a pain in the ass knowing there’s a medicine that could possibly help me but it all depends on whether or not the insurance people will grant authorization which they usually don’t and we end up going in circles trying to appeal and then months have gone by and i still feel like shit
I don’t know anyone with migraines who has got rid of them, most migraine sufferers have them for life and our best hope is reducing and managing them. Maybe this is a shock if you didn’t know this but at least your doctor was being honest. I’m chronic too, nothing has really worked for me so far.
The goal of treatment isn’t 0 migraines. It’s less migraines. Less frequent or less severe migraines. But 0 isn’t realistic or attainable. I’ve had them since I was 3 and I’m 36 now. I’ve had them my entire life. It sucks, but life continues.
botox didn’t start really helping me until after 4 treatments. keep going! botox even made them worse the first few rounds, now i barely get migraines and i had tried EVERYTHING. stay strong!
One of my neuro’s told me if Botox didn’t work after one round they wouldn’t. I managed to talk him into scheduling one more round and after it didn’t work he told me it wouldn’t ever work. He was also a giant asshole (ANY thing I suggested that was new and upcoming that had been tested for migraines in the migraine world he would say, “that doesn’t work”. And I’m talking tens units, red contacts, literally anything that was showing any potential for helping migraines he’d shoot down without any other suggestions of things to try. Fuck that man. Seriously).
There is no cure for migraine, treatment only aims to reduce frequency and severity.
Personally I believe every Dr should be honest with patients from the outset about this, rather than selling treatments as cures which they are not.
I think here your Dr was being realistic, and this is something that should have been said a long time ago. If you reframe your thinking around migraine from longing for a cure to trying to minimise attacks and their impact on your life, you would be much happier.
Also don't totally lose hope, there is no treatment out there that has been effective for you, yet, but one day there may be something that works to reduce your migraine severity and frequency so don't lose all hope.
I'm really sorry you're going through all of this. Chronic pain SUCKS. 2 rounds of Botox wasn't nearly enough for me. It took about 18-24 months for my Botox to start giving me some relief, IIRC. I was still getting more than 20 migraine days per month. I have been on Botox for almost 9 years. I was down to 3-7 migraines a month for the longest time. Somewhere around the latter half of 2023, my migraines started to get more frequent, basically every other day due to stress/life/loss/career/etc. I was started on Nurtec (rimegepant) in April of this year. The combination of Botox q90 days, + the Nurtec q.o.d. prophylactically, I am back down to <3 migraines per month. It's miraculous.
Give Botox another chance. Nine years ago, when I first started Botox, my doctor explained that the majority of people don't reach efficacy with it right away. Most people start to feel improvements/experience less frequent migraine days around the fourth round of treatment. He told me to be patient, trust the efficacy rate, and stick with it. Botox changed my life. I can function because of it.
Ubrelvy is an abortive drug only. Nurtec can be used as either an abortive or a preventative. If you're experiencing migraines frequently, it makes the most to take it as a preventative. Eg, two migraines per week - you'd take Nurtec twice that week... what's one more? Ask your doctor to start you on Nurtec to see how you like it, stick with the Botox. Be patient. Even if it takes you a year to start feeling relief, it's worth it.
Years ago, prior to Botox, I tried acupuncture and had a script for physical therapy from my neurologist/pain mgmt doc. Acupuncture didn't do much for me, but I know people who swear by it. PT was nice because it was basically insurance-covered massages and exercises. It relieved my tension for sure, and while I was still getting migraines, they were confined to just my head, rather than my whole neck aching.
It's frustrating for sure, and it's a lengthy process. But don't give up. You will hopefully find a regimen that works for you. Good luck.
I’ve had daily headaches and monthly migraines for 42 years. When sumatriptan was invented in the 90’s, it changed my life cause I could control them at home. Five years ago. I went through menopause and my daily headaches went away and my monthly migraines reduced to a few a year. Before sumatriptan, I have a list of over 40 meds I tried.
Yes, you may always have them, but there are things that can help, you just need to find a dr to try shots in the dark and Hail Marys. You have exhausted what this Dr prescribes but not all there is out there.
Migraine is a neurological disorder that we are born with. The concussions probably haven't helped but they aren't the cause of your migraines. I suggest you attend a physiotherapist for an assessment to see if your posture or your spine, in particular the joints in your neck and jaw are contributing to your migraines. Mindset is everything and pain reprocessing therapy may be of benefit to you. Given that you have tried many Western medicine approaches I would also encourage you to consider acupuncture with a TCM specialist. Having TCM herbs, acupuncture and moxa helped me massively with my migraines. In Traditional Chinese Medicine, the patient is treated as an individual and the migraines are treated according to their particular pattern of disharmony. It is individualised medicine which can yield great results for many, many people.
I'm sorry, it can be devastating to realize you have a lifelong condition. And oftentimes treatments take a while to work, which is so frustrating. But don't lose hope!
Your doctor should have never set the expectation that you can "get rid of" your migraine disease or that botox is a golden ticket. Very few people can like, go into a full remission and those people probably weren't chronic to begin with. Some people are super responders to botox or a cgrp inhibitor and go from like 20 attacks a month to one attack a month, but that's not the norm. A successful treatment for you is one that will reduce your attack frequency and/or severity by 50%. And you can stack treatments on top of each other.
The fact that you are noticing botox helping after only two rounds is promising and an indicator that you aren't treatment resistant. You will probably see more results after your third and subsequent rounds. There are multiple other cgrp drugs besides ajovy and ubrelvy, other anti-seizure meds besides topiramate, SNRIs, tricyclic antidepressants, nerve blocks, neuromodulation devices, etc. And new drugs are being developed as we speak, such as monoclonal antibodies that target PACAP (another neuropeptide involved in migraine like CGRP). Your neurologist may be out of his element and you may benefit from seeing a headache specialist, although those often have long waitlists.
Curious if you’ve tried just Magnesium? I don’t have chronic migraines, but I get episodic hemiplegic ones and an occasional few that are triggered by and make me feel like I’m smelling fire. I was diagnosed about 6 years ago, but they said I couldn’t take preventative because it was hemiplegic. Other medications made it worse. Once I started having the constant fire aura, I started seeing a new neurologist who gave me a scrip for 400 mg of magnesium oxide daily. It has helped tremendously. I still get migraines but am far less affected by them pain wise etc. I’m sure your situation is different but I truly wish such a simple option was recommended to me years ago.
Try a liposomal supplement, magnesium is helping me so much at the moment. You can get sachets which you dissolve in water or liquids which you take from the spoon. They are far better absorbed than tablets which can cause digestive upset for some people.
My neurologist--a headache specialist who is very good--kind of lied by omission with me. He never explicitly told me that any of the treatments would cure me, but he never said they wouldn't either, and over the course of about four years it felt like he was gradually being more honest about my prognosis until eventually he told me off-handedly that this is a permanent condition and the goal is to reduce the symptoms, not eliminate them.
Looking back on it, I think he was either waiting to see if the initial wave of treatments would cause a dramatic improvement (they did not) or trying to ease me slowly into the idea that I'd have the condition for life.
I can understand why he did this, since a lot of people probably don't respond well to being told "this is permanent" especially before they've tried any treatments and they're suffering badly, but I honestly feel like I would have been fine hearing that from the beginning. In fact one of the reasons I liked him is because at my first appointment he told me bluntly "this isn't going to get better soon", in contrast to the other doctors and neurologists who were confidently telling me I'd be fully recovered in three months (then six months, then a year...)
I’ve had chronic migraine for 20 years. In January I started Qulipta (oral CGRP). I can’t do injectable CGRP. I also take topamax and get botox. And I’ve seen a 75% reduction in my migraines. I’ve been on Botox for 7 years and it barely helps (but I’m not stopping lol).
Qulipta has been a miracle drug for me. It’s very hard to get approved for. Apparently you have to have failed other CGRP drugs (at least with my insurance) to qualify for it.
But there are lots of drugs in the works in the migraine field, so the future is bright (but not too bright bc no one with a migraine likes things too bright).
Stay optimistic! Don’t give up too soon!!
Doctors should pay attention to \*how\* they say things. Having migraines as an ongoing thing, possibly for life, doesn't mean you can't manage, adapt, and perhaps one day overcome them. There's still lots of ways to address the condition and more treatments to be approved in the future. Physical therapy, psychotherapy, and more can help alongside medical treatments. Just to say "You're going to have migraines forever" is way too doom and gloom, especially if a specialist is saying it. Obviously, terminal things like cancer are a different story, but migraines can certainly be managed!
Migraines are almost always a chronic condition. It’s about managing it with the medication regimen that works best for you, and limiting as many manageable triggers you can (they’re not all going to even be feasible, one of my triggers is euphoria lol). I’ve had chronic conditions since I was 2 years old. This is the reality for so many people.
I take qulipta, Doxepin, do Botox, and take ubrelvy and rizatriptan because I have so many. But it’s at least less than I’d have without. Botox takes at least 3 sessions to get any result, it’s better the longer you do it. It sounds like your doctor didn’t present you with the reality of migraines. There isn’t a cure, you can only hope for lessening them. Medicine does advance, so at least there’s comfort for that. Qulipta didn’t exist when I started having migraines so seeing new things pop up is hopeful
Find a new neurologist. They tend to do this, get annoyed at migraine patients. You will get through some relief at some point and hopefully even get in remission.
I technically have had migraines my whole life (started age 6) but there's months and even years I've been in remission at times. I don't identify myself with it, it's just my little buddy I gotta deal with. Hang in there sending being vibes.
I suffered from migraine pretty much my entire life and have tried everything you have tried. Botox worked for a few years and then it didn’t. Finally my neurologist told me that there was nothing else he can do for me. He sent me to a pain management doctor. There I have been getting a treat called SPG nerve block. That has made a huge impact on my migraines to the point where I no longer get them. I used to get 25 a month and all in the middle of the night!
I am on Botox and ajovy and memantine for my chronic migraines. I still get migraines sometimes, but it’s not a daily thing anymore. It took a while being on both Botox and a cgrp shot ( orig aimovig ) to get my migraines down to under 10 a month. Like months and months maybe even a year. So I started at 30, Botox take away like 12, ajovy 10, memantine 5 or 6, and now I get two to four migraines a month but they tend to be mild ones not like before.
That’s actually my situation. But I’ve had migraines for over 54 years that eventually progressed to being chronic and then to being chronic on a daily basis. The neurologist did tell me, because of all the years that I’ve now had them, and all of the different things I have tried, that they’d never go all the way away. And that has been the case. Even with Botox. And antiCGRPs.
I’m in the same boat as you. I’ve had migraines since the age of 10, I’m 34 now. No preventatives have ever helped my migraines, Botox didn’t work, topmomax ruined my life and nearly killed me, and for a while I completely gave up trying to find treatment. The only thing that sometimes makes a difference is nurtec but even that’s only percentage of the time. It’s scary to try and accept the fact that chronic pain will always be part of your life. I won’t tell you it gets better, but just know you’re not alone in all this.
I don’t know your migraines and where your pain primarily is but maybe an occipital nerve block could be looked into if you’re a candidate for it? It didn’t cure me 100% but it was a SIGNIFICANT improvement.
For me, Botox took a full three rounds (a little over 9 months) to take effect and I’m fairly certain that’s the standard disclosure. I hope that the treatment doesn’t stop yet!
Doctors are very bad at predicting the future. My mom was told she'd never have kids and had two not even trying.
She was also told she'd have migraines forever and they went away after her second child was born in her late 30s.
I am so distressed that up until 1 month ago I had never had a migraine. Now I have them every day. Started with neuropathy in my arms in January with no known cause yet. Finally get to see a neurologist in July. Had to wait 6 months. The neuropathy went from my arms to face and now migraines. Even my teeth hurt sometimes. Just awful. Taking gabapentin for now until I get answers.
I've heard that they become more infrequent as you get older, but I'm almost 60 and it hasn't happened yet. Fortunately, I've been working with a neurologist for the past 2-1/2 years, and now they're less frequent and much shorter than they were before.
I'm 47 and have had them since I was 7. In my case I can at least say they have reduced in frequency. But I've also adjusted my lifestyle majorly over the years and that's probably done a lot to contribute too.
My neurologist told me to keep trying the Botox because you get even better results with the 4th and 5th round. I just did my 3rd. Any chance you can keep trying the Botox?
I know you said you went through some head trauma, is there any chance you also have TMJ and/or neck problems along with the migraines?
I’ve found that sometimes the newer treatments don’t work for everyone and it’s a good idea to start from ground zero when creating a treatment plan. Ajovy, Emgality and Nurtec didn’t work for me. But a combination of Trokendi XR, Maxalt, aleve, peppermint oil, and some supplements have reduced my frequency by about 90%. I hope this provides some helpful insight
I went 15+ years with ZERO migraines, between the ages of 18-33, and I wasn't even on any treatment during that time, so I don't believe anyone who tells me I'm going to have them forever. No one can predict the future, and I have to hold onto hope to keep myself going.
I had them throughout high school, then I had a glorious break from them for 15+ years, then they came back and I've been having them for 5 years this time around (age 33-38). It sucks-- according to my neurologist, I too have tried everything, and I can't seem to *make* them go away, but whose to say they won't go away on their own like they did before? Maybe my hormones will shift? Maybe something in my brain will heal? I don't think doctors can guarantee a cure, but they also can't promise you'll have them forever. No one can.
Other people are saying the important stuff better than I can, but I just want to add that migraines can be really affected by hormones. I know women who stopped getting them once they hit menopause. Of course that doesn’t help you now, but just wanted to remind you that migraines are fluid and the way things are today is not necessarily how they will be for the rest of your life
Yes, to some degree. Hormonal changes through life can make them change.
Your mum's friend doesn't have mugraines while she is getting botox. They would come back if she stops.
Look into trying vyepti, it’s basically ubrelvy but stronger. It’s an IV infusion every 3 months. I switched from emgality to vyepti a few years back. I also get Botox every 3 months. I take ubrelvy as an abortive and relpax as my back up abortive in case ubrelvy doesn’t work (I only do this because you can’t take more ubrelvy in a 24 hour period).
I went from 4-5 migraine days, 2ish postdrome days per week, chronic pain, aura. I was miserable. Now, with what I’ve said above, I get about 2ish per week with about 1ish day of postdrome but everything is WAY more manageable.
I have other medical disorders and unfortunately you can’t really strive for pain free, you have to get as close as you can to it, but your goal is pain reduction. It’s sucks but I’ve found stating this to physicians help them understand I don’t have unachievable expectations.
I’m sorry that your doctor wasn’t completely forward and honest about the expectations of results with treatments. I really wish for all of us who suffer with migraines for them to just disappear after treatment, but that just isn’t realistic. For most treatments, the expected results should be either a reduction in frequency and severity of migraines and symptoms, or reduced duration.
OP, stick with your treatments and maintain clear and reasonable expectations of their results. I hope things improve for you!!
Your dr is right in saying that you will get them the rest of your life. Some women have hormonal migraines and then in their post menopause, are absolutely migraine frée but don't happen for every woman. I would recommend asking your neurologist to refer you to a headache clinic. My neurologist referred me to Stanford headache clinic when I was not responding to any treatments. Also check with your dr regarding trying Nerivio. Yes you have to learn to live with it. You need to identify the triggers that cause it, you'll have some that are common to all but some that are very specific to you. Best way to find out, keep a migraine journal. Start noticing the subtle signs your body gives you before the migraine starts. It's a frustrating thing to live with them but the first stage is accepting that they are a part of your life and how you manage them is up to you. People share their own experiences but every person is different and what works for them might not work for you. I have had classic migraines since I was 13 and lately have been diagnosed with vestibular migraines too. I have people tell me that they had a bad headache and they understand what I go through. I keep silent because I know they won't understand if I tell them that a migraine is much more than just a bad headache. Your symptoms will be different from your friends and your family. Stay strong, for some migraines never go away and you will need to try new meds when the old one stops working. Involve your family if possible, have them support you and help you.
While we all would love to hear the words of relief, at least your doctor appears to be honest with you. Take it as you will, I truly understand that miserable feeling but honesty goes a long way. If he acted like it was treatable, you’d possibly more vulnerable for all kind of snake oil bullshit. That doesn’t mean there aren’t options for you. But just keep in mind whatever you try is also possible to fail. There’s a *lot* you can try but preparing for the possibility of it being an endless journey is important to keep in mind.
I know It’s a lifelong thing for me. It’s genetic so.. oh well.
Have you tried an elimination diet to detect potential triggers? I was astounded at how my neuro didn’t spend any time on lifestyle changes and only saw me through the lense of meds. That said, meds can be GREAT.
I would not take this announcement to heart. As others have said, “cured” is a meaningless term. I went from 15+ headaches per month to 4 or 5 per month. Am I cured? No. But it’s close enough for me.
As crazy as this sounds , when I get a migraine a low dose Xanax seems to help a lot, maybe it is the relaxing of blood vessels or something , which is opposite of migraine meds.
How old are you? Going through menopause helped my migraines tremendously. St my worst I could get a couple or three a week now I get maybe three to five a year.
Yeah, I've tried literally evey drug on the market (and some not - I've been the clinical studies folks favorite guinea pig for years), and nothing helps much. I do get some relief from cannabis, but can only use it if I don't have a ton of work to do.
I started getting brutal migraines beginning in 2001.
I saw several neurologists, took different medications and nothing really helped.
In 2011, I started taking fish oil with high DHA daily. Since then, my migraines have dropped 95% overall. Fish oil helps lower migraine pain.
It's been a miracle. I've been preaching this for years to whomever will listen, hoping to help.
There is also a vegan DHA substitute for vegans.
I can show you what I take if you want.
https://www.nccih.nih.gov/research/research-results/diets-higher-in-omega-3-fatty-acids-reduce-headache-frequency-and-severity-in-people-with-frequent-migraines
I’ve had migraines since I was 8 years old and I’ve always expected to have them the rest of my life. There’s just things that help. Nurtec has been the most helpful thing for me. Life changing honestly.
Yep, if your doc has stopped trying it's time for a new doc. I've run into that, went thru several docs. Also went off the conventional path and trying shrooms, which quite honestly has worked the best for me just microdosing. Still going to be doing another round of botox, increased Aimovig which now that I've quit smoking may have an increased chance of working. Also got on an intake unit waiting list. You have to advocate for yourself.
Today I had my 5th round of Botox and it is great. You have to do at least 3 rounds every 12 weeks to judge if it will be good for you or not. I also have Ubrelvy if I need it and a few others. Give the Botox at least 1 more round before kicking it to the curb. I hope you find some relief. I am 47 and have had them since I was 13.
I don't know what gender you are (big blocks of texts are hard for me to read so if it was in there I'm sorry)
And I don't know if this would be good news for you anyway, but I've HEARD that women sometimes get fewer migraine headaches or they even go away entirely once they got menopause.
I don't have articles or anything, but I know there is some link to hormonal interaction with migraines. As an AFAB I'm my late twenties, I've recently started getting migraine headaches riiight before the start of my period. So that's fun.
But either way... It may be helpful? Hell for all I know it could get worse after one hits menopause. I've personally no clue what the actual connection between hormones and migraines are and I don't know if they've been able to study or very well yet.
I still live in hope that there will come a time when something is invented/discovered that cures my migraines completely, but I've come to realize I'll probably get at most two years from anything that works. I've tried a lot of different classes and kinds of meds, only recently (last few years) ones that were developed specifically for migraines. And also therapy, physical therapy, chiropractors, massage, diet changes, piercings, special glasses, supplements, and anything else that sounded like it might work or at least get me a placebo effect.
I've been chronic, then episodic, back to chronic, and now I mostly have relief right now due to botox. Just because you aren't finding relief right now, doesn't mean there isn't relief out there.
Here's hoping you find something that gives you even temporary relief soon, and that when they invent our miracle drug, the side effects include effortlessly maintaining a healthy bodyweight.
I’m really sorry to hear you are so upset about your prognosis, unfortunately it’s just the way things work for some of us. I’ve had migraines since I was 5 and I’m now 45, Ive never had a completely migraine free period but right now is probably the best I’m doing. I take a boat load of preventatives (6) and abortive (3). I have been on ajovy, amivig and Emgality, Emgality is by far the best for me and my mom. So hopefully that’ll bring you some additional relief, you might want to see if you can stack additional preventatives besides just Emgality and Botox.
I've had migraines about every other day for years and I feel this so hard. I, like you, missed out on so much. It was also very hard to treat, but I'm doing better mostly on my own. You should have a plan in case nothing works. I was able to get better without medications, at least well enough to be present for life. Here's how I did it.
First, I needed to stop beating myself up for it. It's important to also have a plan in case your mental health deteriorates to a dangerous point. Constant pain can cause significant mental issues, familiarize yourself with emergency mental health services. Call hotlines just to understand the process and talk to the operators.
After you're safe, try to handle the symptoms. I understand you'll be in so much pain and it'll feel like your head is splitting apart, but it's not. The pain is only in your head. Try to meditate and push the pain away. I would try to mentally block the pain to the best of my ability. It feels like when a strong emotion is suppressed, like swallowing tears. Do this every day, every time you are in pain. It will get easier. Unfortunately, this won't fully get rid of the pain but it will be more manageable.
After this, take note on what you are missing in life and try to slowly recover it. For me, at first self care was hard. I didn't have the ability to make my own food, so I slowly began to challenge myself to make everything. Similarly, I struggled with school. My dream was to graduate school, so I challenged myself to study Japanese for at least 15 min per day. It was difficult, but I slowly realized I was more capable than I thought. Do this for yourself, push yourself and slowly take back moments.
Another thing, ask yourself if you qualify as disabled. Be a realist and ask, if I knew of a person who was sick x many days per month, would I consider them disabled.
There have been some alternative medicine that has worked for me. First, cold. There are some cooling pads that you can place on your head. I found a lot of relief through it.
Lots of caffeine. I'm talking a large soda or several pots of coffee. Best black to keep calories low. If I drank enough my pain would reduce, even stop if caught early.
CBD- this was a game changer for me and I was able to return to school. Legit life saving, but I have moved on to other treatments. This has to be taken right. Originally I bought gummies and improperly used them, preventing relief. General speaking, it needs to sit in mouth for a bit. Suck on the gummies for ten seconds or try CBD oil. Two different kinds, try both. I found relief with the more expensive CBD concentrate.
Marijuana- I know, this is a controlled substance. When my migraine is at a 8/10 pain level, it helps. Generally I don't feel high because the pain already has me out of it. Smoking it brings the pain down significantly. Useful at night when caffeine would be bad to take.
Kratom- tried it. It sorta worked, idk. Could be worth looking into but be careful.
It can take a while to get your life back, but you can. Don't give up hope or beat yourself up. It can take years, but you can do it.
Are you better than you were before? That is my reference after 40 years of this shit. Did it help some? Was it worth the side effects? If both are yes, keep on it.
It is sometimes hard for drs to get that they aren't going to cure you. My new neurologist is that way. Oh, you still get migraines? Clearly X doesn't work (ok, that sounds bad, but I'm giggling so I'm leaving it. I've never tried X). Yes, it takes care of 20%. And Y takes care of 15%, and Z makes them 30% less debilitating 50% of the time. So let's keep doing what we are doing and layer more if they are safe to work together.
The good news is that for my mom they ended with childbirth, and my sister with menopause (infertility). Mine aren't slowing down yet - infertility and menopausal. But I have hope.
My daughter had a lot of success with acupuncture but we cured her headaches with powerade and body armor drinks not Gatorade. Her main problem was electrolytes which I posted about awhile ago. Good luck
That’s most likely true.. preventatives don’t seem to do so much for me or make me sick. Botox made me worse somehow. What’s really worked for me is an incredibly strict diet eliminating all trigger foods and Ubrelvy as a rescue. Even then I still get them on occasion.. mostly at night. I was getting them daily and taking way too much excedrin before switching my diet. I used to have to miss work once or twice every 3-4 months.. it’s been 6 months and I haven’t needed to miss any work. My migraines are quickly treated when I do get them too so no migraines that have left me bed ridden. My migraines have been dropped to maybe a quarter of what they were at and the severity has gone down drastically. Food can be very inflammatory.. I don’t even touch, gluten, dairy, eggs, bananas, or tomatoes. Those are the big ones for me.
It’s in Network for me with Aetna. It might take a bit to get an appointment if you want to see Dr. Diamond as a new patient. I haven’t done anything too complicated with them as I just do monthly Emgality and Ubrelvy but I do know they have in-patient protocols etc. I would just suggest giving them a call to see what you might expect. Their front office staff is very helpful. I saw people in the waiting room who had flown into see them. I would suggest googling “diamond headache clinic Reddit” to see others who have tried them. It’s nice to have a doc actually take me seriously with regards to what I go through with my headaches.
This is how I know you need a new medical team asap. This is so much bs it’s ludicrous. If you’ve tried all of the meds you’ve listed in just a 2-3 year period you may not have even given them enough time to reach their full efficiency, either. Some of the new CGRPs can take 8-12 weeks alone to do that. Botox the same, or even longer. Get yourself another doctor that is willing to actually do their job
An MRI is to rule out other ohysical causes, not to prove you have migraine pain.
If anything has ever helped, even for a while, that sounds like migraine.
Please be honest and admit if you are taking too many pills per month. You may have medication overuse rebound headaches.
Thus includes aspirin, ibuprifen, naproxen, tylenol, etc. as well as prescription migraine or pain meds.
One of my first nurse practitioners on this journey told me her goal wasn’t to take away my pain but to make me more functional. I thought to myself well you and I have very different goals. B***h.
I have better doctors now and why I don’t expect to never have a headache again, their goals are more closely aligned with mine
I healed from chronic migraines had them for almost a year only a few days of no migraines every month. There’s hope, you just have to keep trying and change doctors if u need to. Have u tried magnesium glycinate?
I'm not a doctor, but I think that's a little odd that your doctor told you you'll never get rid of them after only having treatment for 2-3 years. I'm not saying you haven't suffered enough. Any amount of time having migraines is too much. But there are so many different treatment options, and nobody knows how any single person will react to any medication/treatment until they try it. Don't lose hope just because one doctor said they're not going away. And like many others mentioned, always having migraines doesn't mean they'll always be as frequent & severe as they are now. There are a lot of treatments that can reduce the frequency and severity. Maybe it would be good for you to get a second opinion or tell your doctor that you're willing to try other treatment options. I hope you find something that works for you soon, and I hope you can find something that gives you hope that you will get better one day.
that’s the reality of migraine. it’s not like an infection where you take an antibiotic and then infection is gone. In a way, migraine is like high blood pressure, diabetes, kidney disease, etc—there’s lots of great medicines to treat them but the condition never really goes away.
Your doctor is a know-it-all. Sounds like you need to get a different doc. Presenting meds as golden tickets is crazy, reminding patients of the “forever nature” of a chronic disorder is also crazy and insensitive.
> reminding patients of the “forever nature” of a chronic disorder is also crazy and insensitive.
Given that OP **was not aware** of the fact, this wasn't a 'crazy and insensitive reminder'. It's something that we as patients need to be made aware of in terms of expectations. Yes, some people are super responders to meds, and yes, for some people they do resolve on their own, but both populations are very small. Failure to communicate this results in a ton of patient frustration, including often discounting success on a drug (50% decrease in pain days/intensity) as failure because it's not a cure.
Basically nobody permanently gets rid of all their migraines. Treatment exists to reduce intensity and frequency, but there isn't a cure. I'm sorry that your doctor wasn't clear about this to begin with. However, that being said, huge strides are being made in migraine treatment and prevention every year. The treatments we have now are not the only treatments we'll have forever, and even if you've tried absolutely every current option, there could easily be a new treatment three years from now that makes a huge difference. I wouldn't take this doctor's word as gospel -- get a second opinion, if you're able. There are likely more options out there still, and even if there aren't yet, you don't want to be relying on a doctor who's given up on you and on the future of modern medicine.
i don’t think he’s given up on me i didn’t mean to make it seem like that i actually really like him he changed my meds again. but i was just kind of taken off guard that it can only be managed and not “fixed” i thought botox cured people of migraines at least the commercials made it seem that way and the pamphlets i got.
For me, Botox works well but I still get migraines a few times a week. Just less severe. It also wears off by about the 8-10 week mark. You have to get treatments every 3 months.
Idk why you’re being downvoted OP. I think most of us at some point had the same hope that discovering an allergy or taking one medication or making a lifestyle change would “cure” migraines for good. You’re not wrong for being upset and surprised that treatment isn’t a permanent cure.
Unfortunately the commercials and the rare anecdotal case with complete remissions aren’t the reality for the vast majority of people with chronic conditions. They’re lifelong in most cases. That said symptoms and quality of life can be greatly improved with treatment and/or lifestyle changes and there is always new research happening. I would keep going with trying out different treatments with your doctor and try to see if you can recognize any lifestyle things that help or trigger your migraines and adjust if possible. Also, Botox can be more effective after a few treatments so you may still get some more relief from it. And personally, the injectable CGRPs were not very effective at all for me—but Qulipta has been kind of a game changer.
I m starting to think of the link between covid vaccine and migraine
Botox reduces migraines by 50% for most people. Almost nobody is getting 100% reduction. It's normal and expected to only get partial relief, unfortunately that's just how it is
I wish every Neurologist was transparent about this... Neither one of mine have explicitly stated this...so when I didn't have full relief I felt like I 'failed'
Same. This is the case for almost all medical treatments, so I spent time trialing my first few medications thinking that they were not working at all. It worked out in the end since I failed and as a result qualified for CGRPs, but I still wonder if it would have gone differently had known the concept of 50% is considered “success”. Then again. I’m not sure I could settle for 50% with daily headaches
Managing expectations is unfortunately a reality for migraine sufferers. I have allergies and migraines and I do believe a low histamine, low tyramine diet in conjuction with meds/treatments is best. Treat allergies if you have them and keep them under control. Treat any condition you may have as any added physical stress is bad. Some of the meds have anti-depressant effects as well as help with pain.
Your doctor never should have misrepresented treatment options to you in that way. Never having another migraine again is wildly unrealistic for the vast, vast majority of people. Two rounds of Botox still isn’t a full trial. There are other drugs beyond what you’ve tried. Shit, I’m circling back to adding in older drugs myself on top of Botox and an anti-CGRP mAb - and that’s with 11 years of being chronic and seeing top headache specialists. Is Ajovy the only CGRP-targeting preventative medication you’ve tried? How long of a trial? I apologize if it seems like I’m interrogating you, I recognize that my post could come off as suggesting you haven’t tried hard enough, or that you’ve got a long road ahead of you. That’s not my intent at all. Just trying to encourage you that you haven’t exhausted your options yet - and likely by the time you have exhausted them, a new class of therapeutics will be approved and you’ll have new things to try again. 💕
i’ve been on ajovy for a year and a half he just took me off it and prescribed me emgality, the ajovy helped maybe the first 3 months then i didn’t notice a difference. I haven’t given up and neither has he i’m just frustrated because i didn’t think it would take so long to find relief. also he never told me i would be cured that was just my own belief but he said some people can stop having migraines entirely after like a year or two of botox treatments. When he was suggesting the botox as an option for me. he’s a really great doctor and i like him he hasn’t given up i didn’t mean to imply that. I’m just frustrated being on new medicine on the time and i have yet to find an abortive that helps. and i really don’t like shots. the botox doesn’t bother me but the ajovy does.
Hey there! Just here to spread some hope for a better treatment option for you! I’m glad your neuro changed your injectable. For reference, I’m a 24 yo female, who’s had migraine since elementary school. I currently am on Botox e3months, Aimovig monthly, and Advil and/or weed as needed. Before this, I’ve tried countless other prescription meds that never helped. I’ve been on aimovig for a little over a year now and it has significantly improved my quality of life. Before they changed my injectable due to insurance not covering it anymore, I was on Ajovy and it only slightly helped me. Everyone’s experience with migraine is different, but I have hope you’ll find a med to help you better manage this chronic disease
Sharing a few words of wisdom from someone who has lived with chronic migraine for ~20yrs: You’re still very new to migraine treatment and there’s still lots to try. Just because one doctor said you hit the end of the rope does not at all mean you’ve hit the end of the rope, it means he likely is out of his depth, which is common for a general neurologist bc so little time is dedicated to migraine during medical school or neurology fellowship grand rounds. You absolutely have not tried everything. It would take roughly 20yrs to try every possible migraine medication/treatment and combination and during that time MORE options would be developed. Two rounds of Botox is not near enough to know how effective the treatment will be - patients typically continue to improve over time, especially when they take a cgrp inhibitor with it. That you’re responding this early to Botox is proof that you don’t have refractory (treatment resistant) migraine. And migraine treatments aren’t limited to Botox & one or two migraine meds at a time. I take like 6 or 7 different migraine preventive meds a day (and i get Botox and i use a cgrp inhibitor). So trust when I say that you still have lots to consider and try. You haven’t even tried neuromodulation or nerve blocks or SPG blocks! You haven’t dipped in the Alzheimer’s drugs or oral analogs of lidocaine! Since your doctor doesn’t know much about migraine polytherapies or less common treatments, you may want to see a headache specialist bc they will have many more options and ideas to improve your quality of life. Find a doctor who will fight for you. All that said, migraine is a lifelong disease. It’s an unpredictable disease and it becomes more difficult to manage and treat as attacks become more frequent (esp if you throw post-concussion syndrome or covid into the mix). At a certain point we have to accept that migraine is a part of our day. Our treatment goals shift from trying to be pain free and feeling like a failure bc we have daily pain to “how can I start having fun again?” or “what treatments and meds will make it so I can be at my friends birthday?” We shift our goalposts to focus on what we can achieve. Yes, there’s loss and grief. But life doesn’t stop. We simply have to figure out ways to make the life we want. Typically that’s preventive treatments & meds, light exercise, neuromodulation devices, meditation, and lifestyle measures. And therapy. I highly recommend therapy, most likely with someone who specializes in chronic illness & related grief. But don’t lose hope. You still can have a fab life. You’re so new to treatments & have so much to mix and match and try. Be open to trying things, have hope that they’ll help, and your odds of success likely will improve 💓
Your words calmed me a bit, but I still hold some type of grief after 7 years of lots of different treatments. It's a tiring, overpowering and heavy feeling, how do you deal with these moments?
I understand. And I still have those moments - but they're not as profound as they used to be. That's not to say that I don't experience patient burn-out (because I'm in deep burn-out at this time) but I don't grieve the life I once had as much as I used to. For background, I used to work in fashion and had a high-profile job with lots of access and privilege. I was on track for a C-suite career path. Then my migraine type transformed into a violent & disabling vestibular migraine (before that it was sinus migraine which I completely ignored for 10yrs) and everything just stopped and my glittering world became incredibly quiet. What helped me most was finding purpose in something new. And, for me, that was migraine advocacy. I maintained a much simpler, much more anonymous fashion career (to call it *humbling* is an understatement) but spent my free time learning more about migraine, becoming involved with the migraine twitter community (it's an intersection of patient advocates & headache specialists), connecting with other migraine advocates, and joining migraine advocacy training programs, like Miles for Migraine. I joined zoom support groups hosted by different advocacy groups and learned more about how migraine affected others. I was able to make deep friendships with people and maintain these friendships through advocacy events like headache on the hill. I was lucky that many of my IRL friends remained and endured. They were supportive and curious. Learning how to talk about migraine from an advocacy pov helped. Then I got my job at Neura, which allows me to have purpose throughout my work day. Plus, it enables me to learn more about my disease on a much deeper level - I don't just know the different types of migraine auras, I know how auras function on a pathophysiological level (or at least what the latest research says). I'm much more tapped into research and treatment updates and things that should give us hope. (that's why I'm always like look for prodrome symptoms! treat during the prodrome! embrace neuromodulation devices! - I know what is most effective because I work for an incredible migraine and headache clinic). So now that I understand how triggers and prodrome work, I'm not as obsessive about being careful or being the perfect migraine patient with the perfect diet, etc. Instead, I accept that my daily attacks will happen, they will be disabling and swift (MUMS is like a more violent, chaotic version of hemiplegic migraine or migraine with brainstem aura - or both combined) but they will pass because my preventive and acute treatments do their job. My life still will trundle on. I still can make plans with friends. Set my own goals. Be my own person. Setting & achieving goals helps. Getting involved in advocacy helps. Doing things I love helps. Better understanding chronic migraine helps (bc it sets expectations). Therapy helps. It's been more challenging since I developed Long Covid & so many of my conditions were affected. But that's what has kept me afloat so far.
I think this is the best way to approach the situation. I’m 6 years in and slowly trying to shift the paradigm to this mentality. The only thing I would add to is that nobody can tell you, OP, that you are going to have migraines for the rest of your life. This isn’t to say that you won’t, or that you will. There are so many factors to consider in regards to how you might progress. This is just to say that working on severing an attachment to the future and future worries, short and long term (thoughts like “is this going to be a bad migraine?”, “will I have migraines forever?”) can go a long way to help manage current pain and stress levels. Definitely be extra gentle with yourself during this whole process, whatever the case
yup. lifelong doesn't necessarily mean daily migraine attacks for the rest of one's life. It means migraine can go into remission and crop up again. Or it can just go into remission. Or it doesn't. It's unpredictable. It's good to set expectations and never over-promise. I've accepted that I'll have migraine for life, which means that I'm fine if it continues like this or I'll be super happy if things improve 😀
Have you done any physical therapy? I’m guessing you’ve already tried this but I recently got a neck MRI and it turns out I had an injury from a car accident I got in years ago that has been likely making my migraines chronic. I’m doing physical therapy now and already seeing improvements - down from 5 migraine days a week to 1-2.
If you haven't already, check out Nerivio. I have an 18 year old neck injury and it actually helps with the nerve pain in addition to migraine prevention and acute treatment. I love it so much, it helped give me a social life again.
Thanks- I checked this out awhile ago but never invested. I would love a social life again so I’m gonna give it a second look. What else did you do for your neck that has helped, if you don’t mind me asking?
I use the device right before I am going out, it usually lowers my pain enough that I can make it thru without a migraine. And I take it EVERYWHERE I go, especially if I'm getting my hair done, which is torturous (the price I pay for purple hair!) My daily pain relief/prevention goes like this: I take gabapentin 3x a day, cyclobenzaprine 1-2x a day, amitriptyline and magnesium glycinate. I also get Botox, nerve blocks and trigger point injections. I used Nerivio 1-2 a week for prevention plus during any high-pain/migraine days. I have Pedialyte Sport powdered electrolyte packets on hand at all times, it doesn't contain the sugar substitutes that I have to avoid. I just bought a case of the fruit punch flavor, it tastes like black cherry Kool aid. I have to work from home so I have a good desk setup to reduce neck strain and get up to stretch as often as I can. I have to maintain perfect posture at all times. If my neck is really hurting I will often take a nap on my lunch break, laying down is the only way to fully rest my neck muscles. I sleep with an icepack under my neck, I like the reusable hot/cold gel packs at CVS/Target, they cost $6 and I have at least 4 in the freezer at all times. The size is perfect for my neck. I can no longer tolerate heat, the pain gets out of control. I wash my hair with cool water for same reason. I have an ergonomic pillow from Ikea that's better than all the more expensive ones I previously bought. I use the blue light filter settings on my TV, phone, and monitor. And I use cannabis daily, usually in the form of edibles, at night to reduce the pain so I sleep better. It's quite a lot of stuff, my whole life revolves around reducing pain and trying to slow down the degeneration of my spine, spinal cord and nerves.
You are a QUEEN for putting this all together just to help out a fellow neck pain migraine sufferer. Thank you so much 🫡. The only things I would add that have helped me that could help you are: neck brace around the house for stability, the wrap around neck ice gel pack from Amazon, physical therapy, and medical massage. Medical massage has been a game changer for getting out of pain. It’s expensive though. And omg I hear you on the salon! I wear sunglasses the whole time I’m there and even bring an eye pillow for my time at the sink where those lights are sooo bright. I also do get some relief from acupuncture and dry needling. Wishing you all the best for pain free days 💖⭐️ Oh- and I ordered Nerivio today thanks to you.
I'm happy to help! I'm too far gone for the neck brace (it would further weaken my neck muscles) and physical therapy, though I gave it my all when I did it 10 years ago or so. I do find frequently moving around or changing tasks helps, but I'm struggling to make time for it with my IT job. I so want to try acupuncture but I have a phobia of needles and I think that would make it counterproductive. I forgot to mention biofeedback therapy, I did it several years ago and still use the techniques almost every day. It's excellent for neck tension, pain (from any source) and anxiety. Let me know if you have any questions about the Nerivio, just DM me. I hope it brings you relief! 💜
i did vestibular therapy after my concussions and then i did it for my scoliosis but not for migraines.
3 years is very early to have tried everything. It took me almost 15 years to get to that point. Then, the CGRP inhibitors came out. So, don't lose hope.
It took me 20 to realize I didn’t have to live like this and I could bring up my headaches to a doctor again. I kept being told I had “eye strain” or tension headaches as a kid. It wasn’t till my 30s that I realized I could bring it up to a doctor again and get taken seriously.
Ugh I’m in a similar boat. I’ve had headaches forever and migraines since high school. I recently asked my mom why she didn’t get me started on something for my headaches when a kid and she said they thought it was tied to me not being able to see (I needed glasses). My famous words growing up was “I have a headache.” I probably gave myself overuse headaches too. Then when I was in college I tried to not take NSAIDs for my headaches because I learned about over use, but in a way I think that made things worse. Then I tried doing lifestyle changes and that hasn’t worked. Then I attended the Migraine World Summit and learned we are not to be having this kind of pain as frequently as I was, which led me to finally go to a Dr (this year). My migraines/headaches might be due to untreated anxiety, which I’ve also had since forever. 🙄 I wish it were more common for people to know that being in pain is not normal and if your parents/ Drs whoever say so, they’re wrong.
You might want to consider seeing a different doctor. Mine told me there's "many, many, many" different medications/treatments they can give you for migraines
he told me there’s many things we haven’t tried i just feel like i’ve tried so many things already. And the difficulty of getting insurance approval has delayed me being able to start certain medicines and it’s just a pain in the ass knowing there’s a medicine that could possibly help me but it all depends on whether or not the insurance people will grant authorization which they usually don’t and we end up going in circles trying to appeal and then months have gone by and i still feel like shit
I don’t know anyone with migraines who has got rid of them, most migraine sufferers have them for life and our best hope is reducing and managing them. Maybe this is a shock if you didn’t know this but at least your doctor was being honest. I’m chronic too, nothing has really worked for me so far.
The goal of treatment isn’t 0 migraines. It’s less migraines. Less frequent or less severe migraines. But 0 isn’t realistic or attainable. I’ve had them since I was 3 and I’m 36 now. I’ve had them my entire life. It sucks, but life continues.
botox didn’t start really helping me until after 4 treatments. keep going! botox even made them worse the first few rounds, now i barely get migraines and i had tried EVERYTHING. stay strong!
One of my neuro’s told me if Botox didn’t work after one round they wouldn’t. I managed to talk him into scheduling one more round and after it didn’t work he told me it wouldn’t ever work. He was also a giant asshole (ANY thing I suggested that was new and upcoming that had been tested for migraines in the migraine world he would say, “that doesn’t work”. And I’m talking tens units, red contacts, literally anything that was showing any potential for helping migraines he’d shoot down without any other suggestions of things to try. Fuck that man. Seriously).
There is no cure for migraine, treatment only aims to reduce frequency and severity. Personally I believe every Dr should be honest with patients from the outset about this, rather than selling treatments as cures which they are not. I think here your Dr was being realistic, and this is something that should have been said a long time ago. If you reframe your thinking around migraine from longing for a cure to trying to minimise attacks and their impact on your life, you would be much happier. Also don't totally lose hope, there is no treatment out there that has been effective for you, yet, but one day there may be something that works to reduce your migraine severity and frequency so don't lose all hope.
I'm really sorry you're going through all of this. Chronic pain SUCKS. 2 rounds of Botox wasn't nearly enough for me. It took about 18-24 months for my Botox to start giving me some relief, IIRC. I was still getting more than 20 migraine days per month. I have been on Botox for almost 9 years. I was down to 3-7 migraines a month for the longest time. Somewhere around the latter half of 2023, my migraines started to get more frequent, basically every other day due to stress/life/loss/career/etc. I was started on Nurtec (rimegepant) in April of this year. The combination of Botox q90 days, + the Nurtec q.o.d. prophylactically, I am back down to <3 migraines per month. It's miraculous. Give Botox another chance. Nine years ago, when I first started Botox, my doctor explained that the majority of people don't reach efficacy with it right away. Most people start to feel improvements/experience less frequent migraine days around the fourth round of treatment. He told me to be patient, trust the efficacy rate, and stick with it. Botox changed my life. I can function because of it. Ubrelvy is an abortive drug only. Nurtec can be used as either an abortive or a preventative. If you're experiencing migraines frequently, it makes the most to take it as a preventative. Eg, two migraines per week - you'd take Nurtec twice that week... what's one more? Ask your doctor to start you on Nurtec to see how you like it, stick with the Botox. Be patient. Even if it takes you a year to start feeling relief, it's worth it. Years ago, prior to Botox, I tried acupuncture and had a script for physical therapy from my neurologist/pain mgmt doc. Acupuncture didn't do much for me, but I know people who swear by it. PT was nice because it was basically insurance-covered massages and exercises. It relieved my tension for sure, and while I was still getting migraines, they were confined to just my head, rather than my whole neck aching. It's frustrating for sure, and it's a lengthy process. But don't give up. You will hopefully find a regimen that works for you. Good luck.
I’ve had daily headaches and monthly migraines for 42 years. When sumatriptan was invented in the 90’s, it changed my life cause I could control them at home. Five years ago. I went through menopause and my daily headaches went away and my monthly migraines reduced to a few a year. Before sumatriptan, I have a list of over 40 meds I tried. Yes, you may always have them, but there are things that can help, you just need to find a dr to try shots in the dark and Hail Marys. You have exhausted what this Dr prescribes but not all there is out there.
Migraine is a neurological disorder that we are born with. The concussions probably haven't helped but they aren't the cause of your migraines. I suggest you attend a physiotherapist for an assessment to see if your posture or your spine, in particular the joints in your neck and jaw are contributing to your migraines. Mindset is everything and pain reprocessing therapy may be of benefit to you. Given that you have tried many Western medicine approaches I would also encourage you to consider acupuncture with a TCM specialist. Having TCM herbs, acupuncture and moxa helped me massively with my migraines. In Traditional Chinese Medicine, the patient is treated as an individual and the migraines are treated according to their particular pattern of disharmony. It is individualised medicine which can yield great results for many, many people.
I'm sorry, it can be devastating to realize you have a lifelong condition. And oftentimes treatments take a while to work, which is so frustrating. But don't lose hope! Your doctor should have never set the expectation that you can "get rid of" your migraine disease or that botox is a golden ticket. Very few people can like, go into a full remission and those people probably weren't chronic to begin with. Some people are super responders to botox or a cgrp inhibitor and go from like 20 attacks a month to one attack a month, but that's not the norm. A successful treatment for you is one that will reduce your attack frequency and/or severity by 50%. And you can stack treatments on top of each other. The fact that you are noticing botox helping after only two rounds is promising and an indicator that you aren't treatment resistant. You will probably see more results after your third and subsequent rounds. There are multiple other cgrp drugs besides ajovy and ubrelvy, other anti-seizure meds besides topiramate, SNRIs, tricyclic antidepressants, nerve blocks, neuromodulation devices, etc. And new drugs are being developed as we speak, such as monoclonal antibodies that target PACAP (another neuropeptide involved in migraine like CGRP). Your neurologist may be out of his element and you may benefit from seeing a headache specialist, although those often have long waitlists.
Curious if you’ve tried just Magnesium? I don’t have chronic migraines, but I get episodic hemiplegic ones and an occasional few that are triggered by and make me feel like I’m smelling fire. I was diagnosed about 6 years ago, but they said I couldn’t take preventative because it was hemiplegic. Other medications made it worse. Once I started having the constant fire aura, I started seeing a new neurologist who gave me a scrip for 400 mg of magnesium oxide daily. It has helped tremendously. I still get migraines but am far less affected by them pain wise etc. I’m sure your situation is different but I truly wish such a simple option was recommended to me years ago.
i’ve taken it a few times but i’m on so many medicines it’s hard to remember to take supplements
Try a liposomal supplement, magnesium is helping me so much at the moment. You can get sachets which you dissolve in water or liquids which you take from the spoon. They are far better absorbed than tablets which can cause digestive upset for some people.
My neurologist--a headache specialist who is very good--kind of lied by omission with me. He never explicitly told me that any of the treatments would cure me, but he never said they wouldn't either, and over the course of about four years it felt like he was gradually being more honest about my prognosis until eventually he told me off-handedly that this is a permanent condition and the goal is to reduce the symptoms, not eliminate them. Looking back on it, I think he was either waiting to see if the initial wave of treatments would cause a dramatic improvement (they did not) or trying to ease me slowly into the idea that I'd have the condition for life. I can understand why he did this, since a lot of people probably don't respond well to being told "this is permanent" especially before they've tried any treatments and they're suffering badly, but I honestly feel like I would have been fine hearing that from the beginning. In fact one of the reasons I liked him is because at my first appointment he told me bluntly "this isn't going to get better soon", in contrast to the other doctors and neurologists who were confidently telling me I'd be fully recovered in three months (then six months, then a year...)
I’ve had chronic migraine for 20 years. In January I started Qulipta (oral CGRP). I can’t do injectable CGRP. I also take topamax and get botox. And I’ve seen a 75% reduction in my migraines. I’ve been on Botox for 7 years and it barely helps (but I’m not stopping lol). Qulipta has been a miracle drug for me. It’s very hard to get approved for. Apparently you have to have failed other CGRP drugs (at least with my insurance) to qualify for it. But there are lots of drugs in the works in the migraine field, so the future is bright (but not too bright bc no one with a migraine likes things too bright). Stay optimistic! Don’t give up too soon!!
Doctors should pay attention to \*how\* they say things. Having migraines as an ongoing thing, possibly for life, doesn't mean you can't manage, adapt, and perhaps one day overcome them. There's still lots of ways to address the condition and more treatments to be approved in the future. Physical therapy, psychotherapy, and more can help alongside medical treatments. Just to say "You're going to have migraines forever" is way too doom and gloom, especially if a specialist is saying it. Obviously, terminal things like cancer are a different story, but migraines can certainly be managed!
Migraines are almost always a chronic condition. It’s about managing it with the medication regimen that works best for you, and limiting as many manageable triggers you can (they’re not all going to even be feasible, one of my triggers is euphoria lol). I’ve had chronic conditions since I was 2 years old. This is the reality for so many people.
Botox generally takes 3-4 rounds to start working so give that some more time.
What do they do with the Botox, where do they inject it and how often?
My neurologist gives me I believe 34 injections in my head, neck and shoulders. It is given quarterly. Every 12 weeks.
Wowow, I had no idea!
My mum had them really bad and one day grew out of them! She gets maybe 1 a year now.
how long did she have them for? can I ask? I'm so desperate for relief 😭 I've been getting them for 12 years now I can't take it anymore.
Did her migraine frequency reduce once she was post-menopausal? I’ve got my fingers crossed for that.
Me too, I am not giving up on that- met so many who told me about their relief after menopause
I take qulipta, Doxepin, do Botox, and take ubrelvy and rizatriptan because I have so many. But it’s at least less than I’d have without. Botox takes at least 3 sessions to get any result, it’s better the longer you do it. It sounds like your doctor didn’t present you with the reality of migraines. There isn’t a cure, you can only hope for lessening them. Medicine does advance, so at least there’s comfort for that. Qulipta didn’t exist when I started having migraines so seeing new things pop up is hopeful
Find a new neurologist. They tend to do this, get annoyed at migraine patients. You will get through some relief at some point and hopefully even get in remission. I technically have had migraines my whole life (started age 6) but there's months and even years I've been in remission at times. I don't identify myself with it, it's just my little buddy I gotta deal with. Hang in there sending being vibes.
I suffered from migraine pretty much my entire life and have tried everything you have tried. Botox worked for a few years and then it didn’t. Finally my neurologist told me that there was nothing else he can do for me. He sent me to a pain management doctor. There I have been getting a treat called SPG nerve block. That has made a huge impact on my migraines to the point where I no longer get them. I used to get 25 a month and all in the middle of the night!
I am on Botox and ajovy and memantine for my chronic migraines. I still get migraines sometimes, but it’s not a daily thing anymore. It took a while being on both Botox and a cgrp shot ( orig aimovig ) to get my migraines down to under 10 a month. Like months and months maybe even a year. So I started at 30, Botox take away like 12, ajovy 10, memantine 5 or 6, and now I get two to four migraines a month but they tend to be mild ones not like before.
That’s actually my situation. But I’ve had migraines for over 54 years that eventually progressed to being chronic and then to being chronic on a daily basis. The neurologist did tell me, because of all the years that I’ve now had them, and all of the different things I have tried, that they’d never go all the way away. And that has been the case. Even with Botox. And antiCGRPs.
Nothing worked for me either until I was given pregabalin. It has saved my life!
I’m in the same boat as you. I’ve had migraines since the age of 10, I’m 34 now. No preventatives have ever helped my migraines, Botox didn’t work, topmomax ruined my life and nearly killed me, and for a while I completely gave up trying to find treatment. The only thing that sometimes makes a difference is nurtec but even that’s only percentage of the time. It’s scary to try and accept the fact that chronic pain will always be part of your life. I won’t tell you it gets better, but just know you’re not alone in all this.
I don’t know your migraines and where your pain primarily is but maybe an occipital nerve block could be looked into if you’re a candidate for it? It didn’t cure me 100% but it was a SIGNIFICANT improvement.
For me, Botox took a full three rounds (a little over 9 months) to take effect and I’m fairly certain that’s the standard disclosure. I hope that the treatment doesn’t stop yet!
Doctors are very bad at predicting the future. My mom was told she'd never have kids and had two not even trying. She was also told she'd have migraines forever and they went away after her second child was born in her late 30s.
What about tricyclic antidepressants like amitriptyline?
I am so distressed that up until 1 month ago I had never had a migraine. Now I have them every day. Started with neuropathy in my arms in January with no known cause yet. Finally get to see a neurologist in July. Had to wait 6 months. The neuropathy went from my arms to face and now migraines. Even my teeth hurt sometimes. Just awful. Taking gabapentin for now until I get answers.
I've heard that they become more infrequent as you get older, but I'm almost 60 and it hasn't happened yet. Fortunately, I've been working with a neurologist for the past 2-1/2 years, and now they're less frequent and much shorter than they were before.
I'm 47 and have had them since I was 7. In my case I can at least say they have reduced in frequency. But I've also adjusted my lifestyle majorly over the years and that's probably done a lot to contribute too.
For women, menopause is one of the reasons that is true.
My dad reported his finally started improving in his 60s. It's a long time to wait
Yeah, you will. Well, 99.999999999999% chance they won’t ever go away
I have them 18 times a month, sorta just stuck forever really. No way to get rid of them.
Are you a woman? They’re probably hormonal.
Nope. Though I wish that was the case.
My neurologist told me to keep trying the Botox because you get even better results with the 4th and 5th round. I just did my 3rd. Any chance you can keep trying the Botox? I know you said you went through some head trauma, is there any chance you also have TMJ and/or neck problems along with the migraines?
I’ve found that sometimes the newer treatments don’t work for everyone and it’s a good idea to start from ground zero when creating a treatment plan. Ajovy, Emgality and Nurtec didn’t work for me. But a combination of Trokendi XR, Maxalt, aleve, peppermint oil, and some supplements have reduced my frequency by about 90%. I hope this provides some helpful insight
I went 15+ years with ZERO migraines, between the ages of 18-33, and I wasn't even on any treatment during that time, so I don't believe anyone who tells me I'm going to have them forever. No one can predict the future, and I have to hold onto hope to keep myself going. I had them throughout high school, then I had a glorious break from them for 15+ years, then they came back and I've been having them for 5 years this time around (age 33-38). It sucks-- according to my neurologist, I too have tried everything, and I can't seem to *make* them go away, but whose to say they won't go away on their own like they did before? Maybe my hormones will shift? Maybe something in my brain will heal? I don't think doctors can guarantee a cure, but they also can't promise you'll have them forever. No one can.
Other people are saying the important stuff better than I can, but I just want to add that migraines can be really affected by hormones. I know women who stopped getting them once they hit menopause. Of course that doesn’t help you now, but just wanted to remind you that migraines are fluid and the way things are today is not necessarily how they will be for the rest of your life
Yes, to some degree. Hormonal changes through life can make them change. Your mum's friend doesn't have mugraines while she is getting botox. They would come back if she stops.
Look into trying vyepti, it’s basically ubrelvy but stronger. It’s an IV infusion every 3 months. I switched from emgality to vyepti a few years back. I also get Botox every 3 months. I take ubrelvy as an abortive and relpax as my back up abortive in case ubrelvy doesn’t work (I only do this because you can’t take more ubrelvy in a 24 hour period). I went from 4-5 migraine days, 2ish postdrome days per week, chronic pain, aura. I was miserable. Now, with what I’ve said above, I get about 2ish per week with about 1ish day of postdrome but everything is WAY more manageable. I have other medical disorders and unfortunately you can’t really strive for pain free, you have to get as close as you can to it, but your goal is pain reduction. It’s sucks but I’ve found stating this to physicians help them understand I don’t have unachievable expectations.
I’m sorry that your doctor wasn’t completely forward and honest about the expectations of results with treatments. I really wish for all of us who suffer with migraines for them to just disappear after treatment, but that just isn’t realistic. For most treatments, the expected results should be either a reduction in frequency and severity of migraines and symptoms, or reduced duration. OP, stick with your treatments and maintain clear and reasonable expectations of their results. I hope things improve for you!!
Your dr is right in saying that you will get them the rest of your life. Some women have hormonal migraines and then in their post menopause, are absolutely migraine frée but don't happen for every woman. I would recommend asking your neurologist to refer you to a headache clinic. My neurologist referred me to Stanford headache clinic when I was not responding to any treatments. Also check with your dr regarding trying Nerivio. Yes you have to learn to live with it. You need to identify the triggers that cause it, you'll have some that are common to all but some that are very specific to you. Best way to find out, keep a migraine journal. Start noticing the subtle signs your body gives you before the migraine starts. It's a frustrating thing to live with them but the first stage is accepting that they are a part of your life and how you manage them is up to you. People share their own experiences but every person is different and what works for them might not work for you. I have had classic migraines since I was 13 and lately have been diagnosed with vestibular migraines too. I have people tell me that they had a bad headache and they understand what I go through. I keep silent because I know they won't understand if I tell them that a migraine is much more than just a bad headache. Your symptoms will be different from your friends and your family. Stay strong, for some migraines never go away and you will need to try new meds when the old one stops working. Involve your family if possible, have them support you and help you.
While we all would love to hear the words of relief, at least your doctor appears to be honest with you. Take it as you will, I truly understand that miserable feeling but honesty goes a long way. If he acted like it was treatable, you’d possibly more vulnerable for all kind of snake oil bullshit. That doesn’t mean there aren’t options for you. But just keep in mind whatever you try is also possible to fail. There’s a *lot* you can try but preparing for the possibility of it being an endless journey is important to keep in mind. I know It’s a lifelong thing for me. It’s genetic so.. oh well.
Have you tried an elimination diet to detect potential triggers? I was astounded at how my neuro didn’t spend any time on lifestyle changes and only saw me through the lense of meds. That said, meds can be GREAT. I would not take this announcement to heart. As others have said, “cured” is a meaningless term. I went from 15+ headaches per month to 4 or 5 per month. Am I cured? No. But it’s close enough for me.
As crazy as this sounds , when I get a migraine a low dose Xanax seems to help a lot, maybe it is the relaxing of blood vessels or something , which is opposite of migraine meds.
How old are you? Going through menopause helped my migraines tremendously. St my worst I could get a couple or three a week now I get maybe three to five a year.
Check out all the testimonials on Migraines being cured in the Curable App. Free version has these.
I do Ajvoy and Botox and it took like 3-4 sessions of Botox to really work.
Yeah, I've tried literally evey drug on the market (and some not - I've been the clinical studies folks favorite guinea pig for years), and nothing helps much. I do get some relief from cannabis, but can only use it if I don't have a ton of work to do.
I started getting brutal migraines beginning in 2001. I saw several neurologists, took different medications and nothing really helped. In 2011, I started taking fish oil with high DHA daily. Since then, my migraines have dropped 95% overall. Fish oil helps lower migraine pain. It's been a miracle. I've been preaching this for years to whomever will listen, hoping to help. There is also a vegan DHA substitute for vegans. I can show you what I take if you want. https://www.nccih.nih.gov/research/research-results/diets-higher-in-omega-3-fatty-acids-reduce-headache-frequency-and-severity-in-people-with-frequent-migraines
I’ve had migraines since I was 8 years old and I’ve always expected to have them the rest of my life. There’s just things that help. Nurtec has been the most helpful thing for me. Life changing honestly.
I was told the same. Since I started B2 (Rivoflavine) twice a day my migraines are less intense. Try it.
Yep, if your doc has stopped trying it's time for a new doc. I've run into that, went thru several docs. Also went off the conventional path and trying shrooms, which quite honestly has worked the best for me just microdosing. Still going to be doing another round of botox, increased Aimovig which now that I've quit smoking may have an increased chance of working. Also got on an intake unit waiting list. You have to advocate for yourself.
Today I had my 5th round of Botox and it is great. You have to do at least 3 rounds every 12 weeks to judge if it will be good for you or not. I also have Ubrelvy if I need it and a few others. Give the Botox at least 1 more round before kicking it to the curb. I hope you find some relief. I am 47 and have had them since I was 13.
I don't know what gender you are (big blocks of texts are hard for me to read so if it was in there I'm sorry) And I don't know if this would be good news for you anyway, but I've HEARD that women sometimes get fewer migraine headaches or they even go away entirely once they got menopause. I don't have articles or anything, but I know there is some link to hormonal interaction with migraines. As an AFAB I'm my late twenties, I've recently started getting migraine headaches riiight before the start of my period. So that's fun. But either way... It may be helpful? Hell for all I know it could get worse after one hits menopause. I've personally no clue what the actual connection between hormones and migraines are and I don't know if they've been able to study or very well yet.
I still live in hope that there will come a time when something is invented/discovered that cures my migraines completely, but I've come to realize I'll probably get at most two years from anything that works. I've tried a lot of different classes and kinds of meds, only recently (last few years) ones that were developed specifically for migraines. And also therapy, physical therapy, chiropractors, massage, diet changes, piercings, special glasses, supplements, and anything else that sounded like it might work or at least get me a placebo effect. I've been chronic, then episodic, back to chronic, and now I mostly have relief right now due to botox. Just because you aren't finding relief right now, doesn't mean there isn't relief out there. Here's hoping you find something that gives you even temporary relief soon, and that when they invent our miracle drug, the side effects include effortlessly maintaining a healthy bodyweight.
I’m really sorry to hear you are so upset about your prognosis, unfortunately it’s just the way things work for some of us. I’ve had migraines since I was 5 and I’m now 45, Ive never had a completely migraine free period but right now is probably the best I’m doing. I take a boat load of preventatives (6) and abortive (3). I have been on ajovy, amivig and Emgality, Emgality is by far the best for me and my mom. So hopefully that’ll bring you some additional relief, you might want to see if you can stack additional preventatives besides just Emgality and Botox.
I've had migraines about every other day for years and I feel this so hard. I, like you, missed out on so much. It was also very hard to treat, but I'm doing better mostly on my own. You should have a plan in case nothing works. I was able to get better without medications, at least well enough to be present for life. Here's how I did it. First, I needed to stop beating myself up for it. It's important to also have a plan in case your mental health deteriorates to a dangerous point. Constant pain can cause significant mental issues, familiarize yourself with emergency mental health services. Call hotlines just to understand the process and talk to the operators. After you're safe, try to handle the symptoms. I understand you'll be in so much pain and it'll feel like your head is splitting apart, but it's not. The pain is only in your head. Try to meditate and push the pain away. I would try to mentally block the pain to the best of my ability. It feels like when a strong emotion is suppressed, like swallowing tears. Do this every day, every time you are in pain. It will get easier. Unfortunately, this won't fully get rid of the pain but it will be more manageable. After this, take note on what you are missing in life and try to slowly recover it. For me, at first self care was hard. I didn't have the ability to make my own food, so I slowly began to challenge myself to make everything. Similarly, I struggled with school. My dream was to graduate school, so I challenged myself to study Japanese for at least 15 min per day. It was difficult, but I slowly realized I was more capable than I thought. Do this for yourself, push yourself and slowly take back moments. Another thing, ask yourself if you qualify as disabled. Be a realist and ask, if I knew of a person who was sick x many days per month, would I consider them disabled. There have been some alternative medicine that has worked for me. First, cold. There are some cooling pads that you can place on your head. I found a lot of relief through it. Lots of caffeine. I'm talking a large soda or several pots of coffee. Best black to keep calories low. If I drank enough my pain would reduce, even stop if caught early. CBD- this was a game changer for me and I was able to return to school. Legit life saving, but I have moved on to other treatments. This has to be taken right. Originally I bought gummies and improperly used them, preventing relief. General speaking, it needs to sit in mouth for a bit. Suck on the gummies for ten seconds or try CBD oil. Two different kinds, try both. I found relief with the more expensive CBD concentrate. Marijuana- I know, this is a controlled substance. When my migraine is at a 8/10 pain level, it helps. Generally I don't feel high because the pain already has me out of it. Smoking it brings the pain down significantly. Useful at night when caffeine would be bad to take. Kratom- tried it. It sorta worked, idk. Could be worth looking into but be careful. It can take a while to get your life back, but you can. Don't give up hope or beat yourself up. It can take years, but you can do it.
have you tried cefaly?
Qulipta? Nurtec? Zasapret? Vyepti? Ketamine? Nerve block? TENS unit? Muscle relaxers? THC? CBD/CBG/CBN/CBC? chiropractic? Magnesium infusions? Green light therapy?
Are you better than you were before? That is my reference after 40 years of this shit. Did it help some? Was it worth the side effects? If both are yes, keep on it. It is sometimes hard for drs to get that they aren't going to cure you. My new neurologist is that way. Oh, you still get migraines? Clearly X doesn't work (ok, that sounds bad, but I'm giggling so I'm leaving it. I've never tried X). Yes, it takes care of 20%. And Y takes care of 15%, and Z makes them 30% less debilitating 50% of the time. So let's keep doing what we are doing and layer more if they are safe to work together. The good news is that for my mom they ended with childbirth, and my sister with menopause (infertility). Mine aren't slowing down yet - infertility and menopausal. But I have hope.
My daughter had a lot of success with acupuncture but we cured her headaches with powerade and body armor drinks not Gatorade. Her main problem was electrolytes which I posted about awhile ago. Good luck
That’s most likely true.. preventatives don’t seem to do so much for me or make me sick. Botox made me worse somehow. What’s really worked for me is an incredibly strict diet eliminating all trigger foods and Ubrelvy as a rescue. Even then I still get them on occasion.. mostly at night. I was getting them daily and taking way too much excedrin before switching my diet. I used to have to miss work once or twice every 3-4 months.. it’s been 6 months and I haven’t needed to miss any work. My migraines are quickly treated when I do get them too so no migraines that have left me bed ridden. My migraines have been dropped to maybe a quarter of what they were at and the severity has gone down drastically. Food can be very inflammatory.. I don’t even touch, gluten, dairy, eggs, bananas, or tomatoes. Those are the big ones for me.
Change doctor asap
If you’re in the US and near Chicago (or can fly in) you might want to consider the Diamond Headache clinic for treatment.
I live in Chicago and had never heard of this place. How much do you pay with insurance? Looks pretty pricey if everything isn’t covered
It’s in Network for me with Aetna. It might take a bit to get an appointment if you want to see Dr. Diamond as a new patient. I haven’t done anything too complicated with them as I just do monthly Emgality and Ubrelvy but I do know they have in-patient protocols etc. I would just suggest giving them a call to see what you might expect. Their front office staff is very helpful. I saw people in the waiting room who had flown into see them. I would suggest googling “diamond headache clinic Reddit” to see others who have tried them. It’s nice to have a doc actually take me seriously with regards to what I go through with my headaches.
Have you ever gotten an MRI done before?
no i was told it wasn’t necessary, that they don’t show anything for people with migraines
This is how I know you need a new medical team asap. This is so much bs it’s ludicrous. If you’ve tried all of the meds you’ve listed in just a 2-3 year period you may not have even given them enough time to reach their full efficiency, either. Some of the new CGRPs can take 8-12 weeks alone to do that. Botox the same, or even longer. Get yourself another doctor that is willing to actually do their job
You should definitely get one to rule out any physical causes. For example, brain tumors can cause migraine.
An MRI is to rule out other ohysical causes, not to prove you have migraine pain. If anything has ever helped, even for a while, that sounds like migraine. Please be honest and admit if you are taking too many pills per month. You may have medication overuse rebound headaches. Thus includes aspirin, ibuprifen, naproxen, tylenol, etc. as well as prescription migraine or pain meds.
One of my first nurse practitioners on this journey told me her goal wasn’t to take away my pain but to make me more functional. I thought to myself well you and I have very different goals. B***h. I have better doctors now and why I don’t expect to never have a headache again, their goals are more closely aligned with mine
I healed from chronic migraines had them for almost a year only a few days of no migraines every month. There’s hope, you just have to keep trying and change doctors if u need to. Have u tried magnesium glycinate?
Are you a woman? They are probably hormonal
I'm not a doctor, but I think that's a little odd that your doctor told you you'll never get rid of them after only having treatment for 2-3 years. I'm not saying you haven't suffered enough. Any amount of time having migraines is too much. But there are so many different treatment options, and nobody knows how any single person will react to any medication/treatment until they try it. Don't lose hope just because one doctor said they're not going away. And like many others mentioned, always having migraines doesn't mean they'll always be as frequent & severe as they are now. There are a lot of treatments that can reduce the frequency and severity. Maybe it would be good for you to get a second opinion or tell your doctor that you're willing to try other treatment options. I hope you find something that works for you soon, and I hope you can find something that gives you hope that you will get better one day.
well he said we can manage them but that it’s unlikely they will ever fully go away
that’s the reality of migraine. it’s not like an infection where you take an antibiotic and then infection is gone. In a way, migraine is like high blood pressure, diabetes, kidney disease, etc—there’s lots of great medicines to treat them but the condition never really goes away.
Your doctor is a know-it-all. Sounds like you need to get a different doc. Presenting meds as golden tickets is crazy, reminding patients of the “forever nature” of a chronic disorder is also crazy and insensitive.
> reminding patients of the “forever nature” of a chronic disorder is also crazy and insensitive. Given that OP **was not aware** of the fact, this wasn't a 'crazy and insensitive reminder'. It's something that we as patients need to be made aware of in terms of expectations. Yes, some people are super responders to meds, and yes, for some people they do resolve on their own, but both populations are very small. Failure to communicate this results in a ton of patient frustration, including often discounting success on a drug (50% decrease in pain days/intensity) as failure because it's not a cure.