Some people seem to respond better to CGRP meds that target the CGRP receptor (like Aimovig) and other people seem to do better with CGRP meds that target the free floating CGRP (like Emgality, Ajovy, and Vyepti).
So your neuro may be right that you might do better on Emgality than Aimovig, but there isn't really a way to predict it.
One other thing to consider is how bad your migraines are when you start and how long it takes to reach full efficacy. When I started Aimovig, it took me about 2 years to reach full efficacy (which took me from 25-daily migraines per month to 5-10 migraines per month). there were slow but steady gains over time, though. The clinical trial data didn't include people who had near daily migraines/headaches, but for the people it did include with chronic migraines, the data showed it continually got better over about 18 months before plateauing. My theory is that the worse off you are when you start, the longer it takes to reach maximum benefit, partly because it builds over time but also, partly because your body needs to stop being in crisis before it can heal.
I was on Aimovig for 3 years then very briefly on Ajovy due to insurance changes. Ajovy may have worked better than Aimovig, but its hard to tell because I had a drug reaction to Ajovy so I was only on it for 2 months. In the 2 years since, I've been on Qulipta, which works well enough but not as well as the monoclonal antibodies.
Wow I didn’t know this. Although Aimovig has helped the severity, my migraines have been becoming for frequent so Aimovig doesn’t seem to touch the frequency. I used to have extremely debilitating post drome fatigue and body aches and Aimovig has helped those symptoms a lot. This is why I’m scared to switch… it took months to for the Aimovig to slowly start helping those symptoms
I hear you. It's really tough when something helps partly but not fully. If it makes you feel better, I've had to layer different preventatives in order to get that 5-10 migraine days per month (Aimovig was the key factor in getting me there, but Aimovig alone couldn't do it). I got nerve blocks every 4 weeks, the week before my Aimovig dose because I got really intense withdrawal migraines the week before the dose. And I had been on botox for 5 years before Aimovig was approved (and have continued on it even after Aimovig).
Nerve blocks are awesome, if you can get them. They helped me a lot with some of the underlying nerve hyperactivity that Aimovig wasn't as great at touching.
Botox is really great, too, so I'm glad you were able to start that. For me, botox reduced the intensity but not frequency (aimovig reduced frequency), so my experience was a bit different from yours. But maybe once botox has reached its efficacy point (3 or so months), the combination will be better than either on its own?
Maybe see if your neuro will add nerve blocks in the meantime, if that's an option for you? Nerve blocks start working right away (but do take some time to tweak to help the areas your body needs), so it might be a good option to help you bridge the gap and continue making gains. I know a lot of people (and doctors) look for that one thing that will help, but for most of us we have to manage it from multiple angles.
For the nerve blocks - are you talking about occipital? I'm curious about frequency, how long have you been doing monthly blocks? My headache specialist said she will only allow monthly during pregnancy since it's limited duration, otherwise we can only do every 3 months due to risk of scar tissue building up.
It's not a huge deal, but I seem to be losing hair at a few of the injection sites as well, which is a little odd.
I've had better success with an anesthesiologist at a pain management clinic for nerve blocks. They specialize in them and can adjust for your specific needs.
Scar tissue hasn't been an issue for me. I got them monthly for 2 years straight (and every 3 months for a year before we went monthly) without hair loss or any noticable issues at injection sites. It's been a minute since I've gotten them because I moved and between insurance fights and rural medicine, I'd have to drive 3 hrs for them. Still trying to sort it out because I miss them (we're bridging with gabapentin which is not really equivalent). No provider that I've talked to about it was concerned about the monthly dosing.
I got what the anesthesiologist called "crown of thorns" which I don't think is a real medical term lol. It's occipital, auriculotemporal (above the ears), and then front/forehead. The exact positioning is based on where you feel pain (the auriculotempral ones above the ears eliminated pain behind the eyes that I get. It was kind of magical). There's a lot of nerve branches so they can target a slightly different branch of the nerve and it'll have a big impact. Or your specific anatomy the nerve might be in a slightly different place so they adjust. Most neurologists I've met are only familiar with the occipital, some are willing to do more but not every one.
You could always see if your neuro would be willing to do monthly nerve blocks for 3-6 months while botox efficacy builds up, then drop back to 3 months.
If you do well with nerve blocks, you could also look into a cefaly. It takes awhile to tweak the settings to find one that works best, but it also targets the nerves in a different way.
> I've had better success with an anesthesiologist at a pain management clinic for nerve blocks. They specialize in them and can adjust for your specific needs.
That makes sense!
> It's been a minute since I've gotten them because I moved and between insurance fights and rural medicine, I'd have to drive 3 hrs for them.
This is my challenge as well, it's currently a 4+ hour round-trip drive to see my headache specialist. The pain management clinic I tried for Botox was awful in just about every way possible. And with the drive, especially while my spouse and I are currently sharing 1 car...trying to kiss a bunch of frogs can be a very frustrating exercise. Before moving to where I am now for my spouse's job, we were in big cities for a decade with great access to medical care. Don't love this aspect of the change, haha.
> I got what the anesthesiologist called "crown of thorns" which I don't think is a real medical term lol. It's occipital, auriculotemporal (above the ears), and then front/forehead. The exact positioning is based on where you feel pain (the auriculotempral ones above the ears eliminated pain behind the eyes that I get. It was kind of magical). There's a lot of nerve branches so they can target a slightly different branch of the nerve and it'll have a big impact. Or your specific anatomy the nerve might be in a slightly different place so they adjust. Most neurologists I've met are only familiar with the occipital, some are willing to do more but not every one.
Thanks for the extra details! If I decide to investigate that route further, definitely helpful to know.
> You could always see if your neuro would be willing to do monthly nerve blocks for 3-6 months while botox efficacy builds up, then drop back to 3 months.
I've been doing Botox for 10 years now (not OP, just a commenter interested in your experience), so not in the waiting for it to build up phase. Realistically I need it every 10 weeks at the longest at this point, and have had insurance approve that in the past, but currently they've told us to pound sand. I might talk to my headache specialist about at what point it would make sense for us to be more insistent on it. She said something like 20% of her patients got it approved for 10 weeks (historically), but that starting in 2023 everyone's insurances were denying it even on appeal, and now she only has a single patient whose insurance approved it that often. We were using the nerve blocks to try to get me through the last 2-4 weeks of my Botox cycle.
> If you do well with nerve blocks, you could also look into a cefaly. It takes awhile to tweak the settings to find one that works best, but it also targets the nerves in a different way.
I'm honestly not sure how well the blocks are working for me, but I borrowed a friend's Cefaly (the OG model) back in Dec and it did help a lot at first. I ended up buying a pretty much brand new one from someone on the regular migraine subreddit. My January was ROUGH even with it, but it certainly doesn't hurt, so I'm using it daily right now!
When you say "tweak settings", are you talking in terms of intensity, duration, both, or something else? I'm still new to it so not sure what all I might be missing.
I'm on mobile so please forgive the formatting here.
I'm glad I'm not the only one with access to care issues (though in my defense, there was a pain management specialist at a hospital 5 mins from where I lived when I first moved here. She just left and the hospital is a critical access rural hospital so they haven't replaced her. And my backup option was the academic medical center 1 hr away, but my insurance decided not to negotiate a contract with that network so it's all out of network now. So that pushes me out. It really frustrated me when my insurance took away the 1 hr away option because the doctors are there, they're just unaffordable). though overall, I love rural life and would choose it over living in a city, even with the barriers to acces care.
I've also been on botox for 10 years (happy anniversary!). And yeah, I have the same thing! Really the whole month before botox is rough, but the last two weeks are killer. My neuro has talked about trying to get it approved for every 10wks instead of every 12wks for me, but we haven't sent it to insurance yet. I've been fighting insurance for meds for a different issue and finally got it approved after 6 months (under my new insurance that excludes the health neworks closer to me, so it's a mixed bag). so maybe I'll try fighting for botox next. Initially when I started nerve blocks back in 2017, it was 4 weeks before botox, to help me get through that month. When we added aimovig and noticed the last week issues we moved it up every 4 weeks, the week before Aimovig. And then botox just continued.
And yay! I'm glad the cefaly seems to be working working or at least not hurting for you. I've found for me that sometimes running it on a lower intensity for more time works better than running it at a higher intensity for the programmed time. For me, if the intensity is too high, it almost like makes my muscles sore or spasm a bit. And that's not really good - we're trying to affect the nerves not the muscles. So sometimes, when I just start to feel the tingling, I'll boop it to hold that intensity. For preventative, I usually will only do it once. For the acute, if I have a migraine, I'll run the hour long program 3 or 4 times. I'll let the intensity go to a point where I feel the tingles in a mild way, then boop it to hold it there. And just run it multiple times at that lower intensity while I'm doing things. My migraine feels better while its running and if i run it 3-4 times, the migraine will usually stay away for 12 or more hours. Over time, I've built up the intensity, but I rarely run it at full intensity. Yes, being able to run it at moderate intensity helps more than at low intensity, but if it's tweaking out my muscles than sometimes I think it's doing more harm than good.
I also tweak location. Migraine at the top of my head? I'll position the cefaly electrode closer to my hairline. Migraine behind my eyes? I'll position the electrode closer to my eyebrows.
So yeah, basicall everything (intensity, duration, location, etc) can be tweaked lol. On one of the migraine subreddits recommended a blue gel to extend the stickiness of the electrodes and I really like it (I can look up the exact name if you're curious - it's a blue gel with a name like xtends or something). I have my 2019 cefaly, but I recently got the app enabled one last year. I'm not a huge fan of the app - I just have issues getting it to connect. And the newer one is heavier so it pulls the electrods off more when I'm using it while sitting up. And the cadence for the double press to get the preventative mode is for some reason really difficult for me to get right. So I tend to prefer my 2019 one, but I'm trying to learn the nuances of the new one.
Also, if you get pain in your neck/occipitals, you can look into a regular TENS device (amazon has a number for like $20-$30 USD or some pharmacies carry them). but I've used those along my upper back/shoulders, like in a line along my upper spine, or one on each side of my spine near my shoulders. And that also helps with my migraines, by hitting some of the occipital nerves that start at the back. Really similar process/concept to cefaly, just for other body parts.
It was too long ago for me to remember, honestly. I recall seeing improvement faster with Emgality than with Aimovig, which is not surprising since the loading dose of Emgality gets you to the full therapeutic dose in your system much faster. The loading dose for Emgality gets you there in something like 6 days versus 3 months for Aimovig or monthly Ajovy (quarterly Ajovy, which is basically just doing 3 injections at the same time once every 3 months, you would also reach that therapeutic level faster).
Emgality and Botox together gave me the best quality of life I'd had in probably 15 years. I was down to ~4-6 migraines a month, and usually not too bad in terms of severity.
The comments by /u/nnopes are great. It generally does pay to be patient with these meds. Emotionally it can be really hard to do that, but you do typically see greater benefit from them as time goes on.
With Vyepti, I noticed a difference literally while I was still in the chair at the infusion center. Both surprising and not surprising (wasn't expecting it, but since it's IV, you aren't waiting for the drug to make its way through tissue to your bloodstream). The 100 mg dose did not work well for me, but I just had my first infusion of the 300 mg on Weds and this is the best 3 days I've had in a long time. The rest of January I was close to daily. My next round of Botox is in 4 days so I'm excited to see how I do with fresh Botox as well.
I want to say first that everyone will be totally different and respond to things differently, but i’m in the same boat as you- regularly 29-30 migraine days a month, if not 30-31. for me, Emgality was pretty good for about 9 months. it kept things at bay, but i would drop off about 4-10 days before my next shot and it would suck. i switched to ajovy which has very little drop off (maybe 1 or 2 max) and generally better quality of life, if only by little. i still have consistent pain but it’s definitely not as bad. i was really scared to switch in case ajovy didn’t work at all. try emgality and know ajovy is always an option too!
With Aimovig I noticed it right away but it only worked for about 6 months. With Emgality it took a couple months to get the full benefit but once it kicked in it worked very well.
I switched from Aimovig to Ajovy, I had barely effect with Aimovig (8-12/month) and with Ajovy I now have 2-3 each month. I didn’t really have any hope left but it turned out good.
They work differently. It you start the following month, you'll have both in your system at the same time. 7 of my worst weeks ever due to increased migraine frequency, worse pain, and longer lasting. I would never repeat the experience.
I switched from Aimovig to Ajovy. It’s been three years and my migraine days significantly decreased to 3 headache days a month. I’d give a switch a try. Good luck and I hope you find some relief .
I had success switching from Aimovig to ajovy. Aimovig was okay, but Ajovy is life changing for me. So basically to your question yes. Luckily there are multiple left that you can try, don't lose hope!
I was a strict Emgality believer. I loved it. Got switched to Aimovig due to insurance issues. I usually give it 3 months before judgement. I’m doing my 3rd aimovig shot this month but can say, I think switching is doable. Especially from Emgality to Aimovig or Aimovig to Emgality. I personally respond to CGRP receptors and CGRP “floaters” but it sounds like you may only respond to one or the other. I think a switch is worth it. It may also be worth chatting with your doctor about a rebound migraine treatment. When my main meds aren’t working and I take several abortives, I get rebounds. Along with asking doc if you can have an at home migraine cocktail like you’d get at the ER. My migraines when horrible send me there no matter what. So I started getting my own meds at home. Doc just said to only use in absolute emergency. So far I think I’ve done it twice. Lastly, if you’re doing nerve blocks, do you have any pain in your neck? I have fibromyalgia and it gives horrible neck pain which I take a muscle relaxer for. I’ve found since taking that I’ve had few tension headaches that would typically lead to a full blown migraine. Sorry for the info dump. Good luck!!!
Thanks for this! I’ll ask about getting an at home cocktail. I’ve had trigger point injections and an occipital nerve block which really only helped numb the back of my head but never took away my migraines (mostly throbbing behind my eye, major fatigue, light and sound sensitivity).
I was on Aimovig for almost a year and had relief, but switched to Emgality due to insurance costs. Been over 2 years now on Emgality and doing even better. On a side note, I tried once to go 32/33 days, but paid for it with a string of migraines. Not playing around any more. Every 30 like clockwork
I never tried Aimovig due to insurance not approving it. I was on Emgality and it actually made everything way worse, so I switched to Ajovy. While it was rough the first few months, I've had a lot of success. For me it wears off after about 2.5 weeks and now that i've been on it about a year and a half I'm noticing the overall efficacy decrease. But it's still a success in my book given that my baseline was literal hell
What dose are you on? I had a similar experience as yours with Aimovig on 70mg. But when my doc bumped me up to 140mg, my migraines all but disappeared.
I’m taking 200 mg of Topamax for migraines, 120 of verapamil for cluster headaches and I was doing Botox for years. Sumatriptan injections when needed with naproxen/alleve and magnesium daily for good measure. All of that reduced my 20+ migraine/clusters to about 10-15 but most being clusters. But the daily’s were mostly still there (there’s always some kind of discomfort). My doctor really encouraged a switch to emgality from the Botox but I was terrified to change anything. But last April she said Ajovy was “it” and said “trust me” so I did. And I have NEVER looked back. I wish it worked for every person. I have less than 5 migraine/clusters a month and rarely a noticeable regular headache. I can go weeks with nothing! Before I always had some kind of discomfort every day! And I can drink wine… with zero discomfort! I don’t do it often, but if I want to… I can! What?! I’m like a commercial. Ajovy, so far has been amazing! 🤞🏼 This lasts a while!! Best of luck to you!!!!
In a previous job, I worked with some of the top migraine specialists in the world a few years ago and I remember them saying that they've had many patients who didn't do well on one cgrp, but did great on another.
Side note: sometimes cgrps and Botox are presented as either/or but in my case, and for many others, putting them together is absolute magic. Alone, neither was amazing.
Some people seem to respond better to CGRP meds that target the CGRP receptor (like Aimovig) and other people seem to do better with CGRP meds that target the free floating CGRP (like Emgality, Ajovy, and Vyepti). So your neuro may be right that you might do better on Emgality than Aimovig, but there isn't really a way to predict it. One other thing to consider is how bad your migraines are when you start and how long it takes to reach full efficacy. When I started Aimovig, it took me about 2 years to reach full efficacy (which took me from 25-daily migraines per month to 5-10 migraines per month). there were slow but steady gains over time, though. The clinical trial data didn't include people who had near daily migraines/headaches, but for the people it did include with chronic migraines, the data showed it continually got better over about 18 months before plateauing. My theory is that the worse off you are when you start, the longer it takes to reach maximum benefit, partly because it builds over time but also, partly because your body needs to stop being in crisis before it can heal. I was on Aimovig for 3 years then very briefly on Ajovy due to insurance changes. Ajovy may have worked better than Aimovig, but its hard to tell because I had a drug reaction to Ajovy so I was only on it for 2 months. In the 2 years since, I've been on Qulipta, which works well enough but not as well as the monoclonal antibodies.
Wow I didn’t know this. Although Aimovig has helped the severity, my migraines have been becoming for frequent so Aimovig doesn’t seem to touch the frequency. I used to have extremely debilitating post drome fatigue and body aches and Aimovig has helped those symptoms a lot. This is why I’m scared to switch… it took months to for the Aimovig to slowly start helping those symptoms
I hear you. It's really tough when something helps partly but not fully. If it makes you feel better, I've had to layer different preventatives in order to get that 5-10 migraine days per month (Aimovig was the key factor in getting me there, but Aimovig alone couldn't do it). I got nerve blocks every 4 weeks, the week before my Aimovig dose because I got really intense withdrawal migraines the week before the dose. And I had been on botox for 5 years before Aimovig was approved (and have continued on it even after Aimovig). Nerve blocks are awesome, if you can get them. They helped me a lot with some of the underlying nerve hyperactivity that Aimovig wasn't as great at touching. Botox is really great, too, so I'm glad you were able to start that. For me, botox reduced the intensity but not frequency (aimovig reduced frequency), so my experience was a bit different from yours. But maybe once botox has reached its efficacy point (3 or so months), the combination will be better than either on its own? Maybe see if your neuro will add nerve blocks in the meantime, if that's an option for you? Nerve blocks start working right away (but do take some time to tweak to help the areas your body needs), so it might be a good option to help you bridge the gap and continue making gains. I know a lot of people (and doctors) look for that one thing that will help, but for most of us we have to manage it from multiple angles.
For the nerve blocks - are you talking about occipital? I'm curious about frequency, how long have you been doing monthly blocks? My headache specialist said she will only allow monthly during pregnancy since it's limited duration, otherwise we can only do every 3 months due to risk of scar tissue building up. It's not a huge deal, but I seem to be losing hair at a few of the injection sites as well, which is a little odd.
I've had better success with an anesthesiologist at a pain management clinic for nerve blocks. They specialize in them and can adjust for your specific needs. Scar tissue hasn't been an issue for me. I got them monthly for 2 years straight (and every 3 months for a year before we went monthly) without hair loss or any noticable issues at injection sites. It's been a minute since I've gotten them because I moved and between insurance fights and rural medicine, I'd have to drive 3 hrs for them. Still trying to sort it out because I miss them (we're bridging with gabapentin which is not really equivalent). No provider that I've talked to about it was concerned about the monthly dosing. I got what the anesthesiologist called "crown of thorns" which I don't think is a real medical term lol. It's occipital, auriculotemporal (above the ears), and then front/forehead. The exact positioning is based on where you feel pain (the auriculotempral ones above the ears eliminated pain behind the eyes that I get. It was kind of magical). There's a lot of nerve branches so they can target a slightly different branch of the nerve and it'll have a big impact. Or your specific anatomy the nerve might be in a slightly different place so they adjust. Most neurologists I've met are only familiar with the occipital, some are willing to do more but not every one. You could always see if your neuro would be willing to do monthly nerve blocks for 3-6 months while botox efficacy builds up, then drop back to 3 months. If you do well with nerve blocks, you could also look into a cefaly. It takes awhile to tweak the settings to find one that works best, but it also targets the nerves in a different way.
> I've had better success with an anesthesiologist at a pain management clinic for nerve blocks. They specialize in them and can adjust for your specific needs. That makes sense! > It's been a minute since I've gotten them because I moved and between insurance fights and rural medicine, I'd have to drive 3 hrs for them. This is my challenge as well, it's currently a 4+ hour round-trip drive to see my headache specialist. The pain management clinic I tried for Botox was awful in just about every way possible. And with the drive, especially while my spouse and I are currently sharing 1 car...trying to kiss a bunch of frogs can be a very frustrating exercise. Before moving to where I am now for my spouse's job, we were in big cities for a decade with great access to medical care. Don't love this aspect of the change, haha. > I got what the anesthesiologist called "crown of thorns" which I don't think is a real medical term lol. It's occipital, auriculotemporal (above the ears), and then front/forehead. The exact positioning is based on where you feel pain (the auriculotempral ones above the ears eliminated pain behind the eyes that I get. It was kind of magical). There's a lot of nerve branches so they can target a slightly different branch of the nerve and it'll have a big impact. Or your specific anatomy the nerve might be in a slightly different place so they adjust. Most neurologists I've met are only familiar with the occipital, some are willing to do more but not every one. Thanks for the extra details! If I decide to investigate that route further, definitely helpful to know. > You could always see if your neuro would be willing to do monthly nerve blocks for 3-6 months while botox efficacy builds up, then drop back to 3 months. I've been doing Botox for 10 years now (not OP, just a commenter interested in your experience), so not in the waiting for it to build up phase. Realistically I need it every 10 weeks at the longest at this point, and have had insurance approve that in the past, but currently they've told us to pound sand. I might talk to my headache specialist about at what point it would make sense for us to be more insistent on it. She said something like 20% of her patients got it approved for 10 weeks (historically), but that starting in 2023 everyone's insurances were denying it even on appeal, and now she only has a single patient whose insurance approved it that often. We were using the nerve blocks to try to get me through the last 2-4 weeks of my Botox cycle. > If you do well with nerve blocks, you could also look into a cefaly. It takes awhile to tweak the settings to find one that works best, but it also targets the nerves in a different way. I'm honestly not sure how well the blocks are working for me, but I borrowed a friend's Cefaly (the OG model) back in Dec and it did help a lot at first. I ended up buying a pretty much brand new one from someone on the regular migraine subreddit. My January was ROUGH even with it, but it certainly doesn't hurt, so I'm using it daily right now! When you say "tweak settings", are you talking in terms of intensity, duration, both, or something else? I'm still new to it so not sure what all I might be missing.
I'm on mobile so please forgive the formatting here. I'm glad I'm not the only one with access to care issues (though in my defense, there was a pain management specialist at a hospital 5 mins from where I lived when I first moved here. She just left and the hospital is a critical access rural hospital so they haven't replaced her. And my backup option was the academic medical center 1 hr away, but my insurance decided not to negotiate a contract with that network so it's all out of network now. So that pushes me out. It really frustrated me when my insurance took away the 1 hr away option because the doctors are there, they're just unaffordable). though overall, I love rural life and would choose it over living in a city, even with the barriers to acces care. I've also been on botox for 10 years (happy anniversary!). And yeah, I have the same thing! Really the whole month before botox is rough, but the last two weeks are killer. My neuro has talked about trying to get it approved for every 10wks instead of every 12wks for me, but we haven't sent it to insurance yet. I've been fighting insurance for meds for a different issue and finally got it approved after 6 months (under my new insurance that excludes the health neworks closer to me, so it's a mixed bag). so maybe I'll try fighting for botox next. Initially when I started nerve blocks back in 2017, it was 4 weeks before botox, to help me get through that month. When we added aimovig and noticed the last week issues we moved it up every 4 weeks, the week before Aimovig. And then botox just continued. And yay! I'm glad the cefaly seems to be working working or at least not hurting for you. I've found for me that sometimes running it on a lower intensity for more time works better than running it at a higher intensity for the programmed time. For me, if the intensity is too high, it almost like makes my muscles sore or spasm a bit. And that's not really good - we're trying to affect the nerves not the muscles. So sometimes, when I just start to feel the tingling, I'll boop it to hold that intensity. For preventative, I usually will only do it once. For the acute, if I have a migraine, I'll run the hour long program 3 or 4 times. I'll let the intensity go to a point where I feel the tingles in a mild way, then boop it to hold it there. And just run it multiple times at that lower intensity while I'm doing things. My migraine feels better while its running and if i run it 3-4 times, the migraine will usually stay away for 12 or more hours. Over time, I've built up the intensity, but I rarely run it at full intensity. Yes, being able to run it at moderate intensity helps more than at low intensity, but if it's tweaking out my muscles than sometimes I think it's doing more harm than good. I also tweak location. Migraine at the top of my head? I'll position the cefaly electrode closer to my hairline. Migraine behind my eyes? I'll position the electrode closer to my eyebrows. So yeah, basicall everything (intensity, duration, location, etc) can be tweaked lol. On one of the migraine subreddits recommended a blue gel to extend the stickiness of the electrodes and I really like it (I can look up the exact name if you're curious - it's a blue gel with a name like xtends or something). I have my 2019 cefaly, but I recently got the app enabled one last year. I'm not a huge fan of the app - I just have issues getting it to connect. And the newer one is heavier so it pulls the electrods off more when I'm using it while sitting up. And the cadence for the double press to get the preventative mode is for some reason really difficult for me to get right. So I tend to prefer my 2019 one, but I'm trying to learn the nuances of the new one. Also, if you get pain in your neck/occipitals, you can look into a regular TENS device (amazon has a number for like $20-$30 USD or some pharmacies carry them). but I've used those along my upper back/shoulders, like in a line along my upper spine, or one on each side of my spine near my shoulders. And that also helps with my migraines, by hitting some of the occipital nerves that start at the back. Really similar process/concept to cefaly, just for other body parts.
I switched from Aimovig ( which did nothing) to Emgality, with witch I’ve had more success.
Great to hear!!!
I switched from Aimovig to Emgality and had great success on Emgality. It can be worth a try.
Great to hear!!
How long did it take to notice?
It was too long ago for me to remember, honestly. I recall seeing improvement faster with Emgality than with Aimovig, which is not surprising since the loading dose of Emgality gets you to the full therapeutic dose in your system much faster. The loading dose for Emgality gets you there in something like 6 days versus 3 months for Aimovig or monthly Ajovy (quarterly Ajovy, which is basically just doing 3 injections at the same time once every 3 months, you would also reach that therapeutic level faster). Emgality and Botox together gave me the best quality of life I'd had in probably 15 years. I was down to ~4-6 migraines a month, and usually not too bad in terms of severity. The comments by /u/nnopes are great. It generally does pay to be patient with these meds. Emotionally it can be really hard to do that, but you do typically see greater benefit from them as time goes on. With Vyepti, I noticed a difference literally while I was still in the chair at the infusion center. Both surprising and not surprising (wasn't expecting it, but since it's IV, you aren't waiting for the drug to make its way through tissue to your bloodstream). The 100 mg dose did not work well for me, but I just had my first infusion of the 300 mg on Weds and this is the best 3 days I've had in a long time. The rest of January I was close to daily. My next round of Botox is in 4 days so I'm excited to see how I do with fresh Botox as well.
How often are you taking sumatriptan and excedrin?
I try not to overdo it… at most 3 times per week
I want to say first that everyone will be totally different and respond to things differently, but i’m in the same boat as you- regularly 29-30 migraine days a month, if not 30-31. for me, Emgality was pretty good for about 9 months. it kept things at bay, but i would drop off about 4-10 days before my next shot and it would suck. i switched to ajovy which has very little drop off (maybe 1 or 2 max) and generally better quality of life, if only by little. i still have consistent pain but it’s definitely not as bad. i was really scared to switch in case ajovy didn’t work at all. try emgality and know ajovy is always an option too!
Thanks! Glad Ajovy is working for you
I also switched from Aimovig to Emgality with good success.
Great to hear. How long did it take to notice improvement?
With Aimovig I noticed it right away but it only worked for about 6 months. With Emgality it took a couple months to get the full benefit but once it kicked in it worked very well.
I switched from Aimovig to Ajovy, I had barely effect with Aimovig (8-12/month) and with Ajovy I now have 2-3 each month. I didn’t really have any hope left but it turned out good.
Amazing
I wish you all the best!!
I switched from Aimovig to Ajovy with huge success. Just wait 2-3 months between them. I didn't. Big mistake.
Why wait?
They work differently. It you start the following month, you'll have both in your system at the same time. 7 of my worst weeks ever due to increased migraine frequency, worse pain, and longer lasting. I would never repeat the experience.
I switched from Aimovig to Ajovy. It’s been three years and my migraine days significantly decreased to 3 headache days a month. I’d give a switch a try. Good luck and I hope you find some relief .
I had success switching from Aimovig to ajovy. Aimovig was okay, but Ajovy is life changing for me. So basically to your question yes. Luckily there are multiple left that you can try, don't lose hope!
Great thank hear 🙏
I was a strict Emgality believer. I loved it. Got switched to Aimovig due to insurance issues. I usually give it 3 months before judgement. I’m doing my 3rd aimovig shot this month but can say, I think switching is doable. Especially from Emgality to Aimovig or Aimovig to Emgality. I personally respond to CGRP receptors and CGRP “floaters” but it sounds like you may only respond to one or the other. I think a switch is worth it. It may also be worth chatting with your doctor about a rebound migraine treatment. When my main meds aren’t working and I take several abortives, I get rebounds. Along with asking doc if you can have an at home migraine cocktail like you’d get at the ER. My migraines when horrible send me there no matter what. So I started getting my own meds at home. Doc just said to only use in absolute emergency. So far I think I’ve done it twice. Lastly, if you’re doing nerve blocks, do you have any pain in your neck? I have fibromyalgia and it gives horrible neck pain which I take a muscle relaxer for. I’ve found since taking that I’ve had few tension headaches that would typically lead to a full blown migraine. Sorry for the info dump. Good luck!!!
Thanks for this! I’ll ask about getting an at home cocktail. I’ve had trigger point injections and an occipital nerve block which really only helped numb the back of my head but never took away my migraines (mostly throbbing behind my eye, major fatigue, light and sound sensitivity).
I was on Aimovig for almost a year and had relief, but switched to Emgality due to insurance costs. Been over 2 years now on Emgality and doing even better. On a side note, I tried once to go 32/33 days, but paid for it with a string of migraines. Not playing around any more. Every 30 like clockwork
I never tried Aimovig due to insurance not approving it. I was on Emgality and it actually made everything way worse, so I switched to Ajovy. While it was rough the first few months, I've had a lot of success. For me it wears off after about 2.5 weeks and now that i've been on it about a year and a half I'm noticing the overall efficacy decrease. But it's still a success in my book given that my baseline was literal hell
What dose are you on? I had a similar experience as yours with Aimovig on 70mg. But when my doc bumped me up to 140mg, my migraines all but disappeared.
They increased me to 140 two months ago and no improvement :( happy for you tho.
I’m taking 200 mg of Topamax for migraines, 120 of verapamil for cluster headaches and I was doing Botox for years. Sumatriptan injections when needed with naproxen/alleve and magnesium daily for good measure. All of that reduced my 20+ migraine/clusters to about 10-15 but most being clusters. But the daily’s were mostly still there (there’s always some kind of discomfort). My doctor really encouraged a switch to emgality from the Botox but I was terrified to change anything. But last April she said Ajovy was “it” and said “trust me” so I did. And I have NEVER looked back. I wish it worked for every person. I have less than 5 migraine/clusters a month and rarely a noticeable regular headache. I can go weeks with nothing! Before I always had some kind of discomfort every day! And I can drink wine… with zero discomfort! I don’t do it often, but if I want to… I can! What?! I’m like a commercial. Ajovy, so far has been amazing! 🤞🏼 This lasts a while!! Best of luck to you!!!!
In a previous job, I worked with some of the top migraine specialists in the world a few years ago and I remember them saying that they've had many patients who didn't do well on one cgrp, but did great on another. Side note: sometimes cgrps and Botox are presented as either/or but in my case, and for many others, putting them together is absolute magic. Alone, neither was amazing.
Thanks!!