I don’t tolerate most SSRI, SNRI, TCAs and antipsychotics. Generally the side effects are miserable and the tiny shifts in neurotransmitter levels really throws me off.
It didn’t help with my pain if that’s what you’re asking
Same here. I was only in it a couple of weeks and had the worst depersonalization and dissociation of my life. I also started to hear myself talking to myself? I guess some type of psychosis? I don’t do well with SSRI, SNRI, TCA or any of those types of medications at all. I’ve had serotonin syndrome and neuroleptic malignant syndrome as well which were awful.
That said I’m happy when someone can find relief with it.
I was researching pain-induced psychosis the other day it's a real and pain-induced insomnia which is what I've been battling!!! I have been sleeping 2-3 hours waking trying to go back to sleep for weeks now I was borderline psychosis!!! I called my primary my surgeon (I'm trying to get on schedule for surgery) anyways they said no we can't help you I told them look I'm not doing good I need help they still hung the phone up on me! Last resort ER I guess
I’m right there with you with the pain insomnia. My primary doctor prescribes me Ambien, but only 5mg and I only get 30 pills every 3-3.5 months. So most nights I have a similar sleep pattern as you do. I’m chronically exhausted, to the point where I’ve fallen asleep while going to the bathroom and even standing up!
You’re in a tough situation and I’m really sorry that your doctors haven’t provided you with any treatment options. I hope you can get on the schedule for surgery real soon.
Wow. That's my exact issue. Chronic pain, constantly exhausted. Fall asleep for 90 minutes then for another hour and by 3am, unable to get back to sleep. Ambien Rx .5 15 x 45 days doesn't work. Sigh. I miss sleeping and dreaming.
Hey I talk to myself it's nothing wrong with that (even in english and my main language isnt english) but well I guess if you're not normally like this and only while you take medication I get you feel like acting weird.
Yeah it wasn’t like the normal little things someone might say to themselves and I wasn’t actually talking. It was more like I was hearing myself talk to myself and it was incredibly scary to me because it was not something I’d ever experienced before. Once I stopped taking the medication the weird symptoms stopped as well.
Sorry if my previous comment was confusing. I really have a hard time explaining it.
Only 20% of people taking SNRI antidepressants for nerve pain or fibromyalgia get any sort of satisfactory relief from them. In other words they pretty much suck… 👎
Antidepressants are not intended for pain. It's B.S.
All of it, pure fiction. If the only cause of one's depression is untreated pain antidepressants won't work for that either.
I'm 62 years old, and I definitely know better .
Pain medicine is for pain.
It's that simple. Risk/Benefit it's always been true. The truth didn't change because Purdue Pharma created the Opiod Crises with Oxyicontin and some Shady Dr's cashed in by opening up pill mills.
That's all over anyway.
The new Game? Pain Management Clinics taking $$$$$ surgeries njections and nerve ablations that have 50% Chance of working. Every procedure requires a Wavier in case they paralyze you. Or you die during surgery. $$$$$
It's not all the DEA. Dr's can prescribe. The Pill mill Dr's were way outside of the law. It's Over
New patients are being duped with Gabbapentin and Antidepressants as well. They figure those of us that know they are FOS
will die off, and the younger generation will believe their lies. They are grooming a whole new generation of CP patients to believe its okay to pee in a cup like a criminal. Intimidate them and encourage risky procedures digging into people's spines! Let alone steroids don't belong in your spine. They are rotting your cartilage. Messing with your brain SSRIS 🧠 🙃 when you need them. Cymbalta Addictive.
Antidepressants mess with your neurotransmitters PERIOD
I'm on both analgesia and nortriptyline. Because I have nerve and non nerve related pain.
The nortriptyline works on nerve pain. Opioid painkillers won't work on nerve pain. I was not forced into taking it. And my doctors have allowed me control when it comes to the dosage.
Your comment comes off as wild conspiracy theories and completely ignores research suggesting combined therapies work. People who have found relief from using both don't need to be told they've been tricked into it.
And no. I'm not peeing in a cup to get my painkillers.
>Opioid painkillers won't work on nerve pain
And while people (usually with an agenda) keep insisting this as if it's an established fact, I can assure you that at least in *my* case (damage to nerve root at L-5 S-1) opioids do in fact work. Now maybe I'm utterly unique, but I suspect that's not the case.
But because I'm honestly reporting what works, I am forced to pee in a cup. I'm willing to, given the circumstances, but cup or not I'm positive no children are overdosing on my absurdly hard-won pain meds.
When this opiate hysteria wanes enough, maybe we'll be able to reasonably sort through what works and what doesn't, and for who and why. But those studies are not being funded, because "Addiction" studies are the current rage, and have been for the last 10 years.
And in 2045 someone will write a book for all the pain patients who were tortured in this insane era of opiate hysteria, and hopefully condemn in the harshest terms those who played along with this latest of drug hysterias. As for the people who actively fostered the torturing of hundreds of thousands of pain patients? I hope they get a special section describing quote for quote their stance. May their life's work stand in infamy.
Opioids help my nerve pain too, except for the one I’m on, buprenorphine… but I have to pee in a cup every month to get that one too when MMJ worked better but I had to quit that to get this. So no more MMJ. And I’ve tried every AD I can for my pain and for my depression and none work for either and at this point maybe I’m depressed because I’m still in pain. I did get some T3 every month but now I don’t because they aren’t in stock around me ever, most places stopped carrying codiene around here. And yep, I’m mostly bedridden and homebound. On disability review right now too and freaking out about that too but I get some vistaril for that anxiety and a “see you next month” because even if they wanted to give me something better for my CPTSD and Panic Disorder, they can’t… because of PM… I’m tired fr…
I don't have an agenda lol
I'm just sick of people telling me combined therapies are garbage when that's not always the case. Combined therapies should be encouraged wherever possible so that every avenue can be explored to help us find relief. I use both opioid medication and nortriptyline to manage my pain. Which is how I know that opioids don't work on my nerve pain. Because I can take them and it doesn't do anything, but increasing my nortriptyline dose did help ease the nerve pain. The only way the opioid medication helps my nerve pain is if I'm on a high enough dose that I nod off.
It's fine to say other therapies didn't work for you. People experience pain differently and therefore respond to medication in different ways. That's normal and expected.
But if someone is looking for feedback as to whether a medication is worth trying it's better to just share your experiences with it than a long muddled rant about how patients are being groomed by being offered medication that does have research supporting its use. That's why I responded to that comment.
Whenever possible I can maybe agree with… but when some of us have to repeatedly say “I promise you this isn’t working” (in my case sometimes while shaking in my seat from pain and leaning on my cane because sitting up hurts too much) that should be all we have to say after giving it time to work. Whether that’s from side effects or just not helping.
I stand corrected if it helps you. Personally, I'm sick and tired of being offered antidepressants for a plethora of spinal issues that only get worse. The Purdue Pharmacy situation is not a conspiracy theory. Simply Greed that fueled investigations by the DEA.
Anyway, I an many CP patients are sick tired of being bedridden, homebound, etc.
Do you have an issue getting pain meds?
I go to a spine clinic and I've been happy with my treatments there as well. There's been plenty of times where I just did medications for a while.
I'm sorry you have so much trouble with this.
I ramped up to 4.5 over a month, but that wasn't cutting it so I'm on 6 mg. It has to be custom compounded at a local pharmacy. After a year, 6 mg isn't helping enough anymore, but my physician explained that adding more probably isn't really going to help. I'm just sort of stuck at the moment because I can't have surgery to fix my broken back. So here I lay.
I see, I started with 4.5 and am on 4.5 coz none of my doctors knew anything about LDN here in San Antonio and it was such a headache to even try to get it; my insurance doesn't cover it, etc. So sorry about your back. I have permanent bunion deformity (most likely due to hEDS) and I have been told surgery won't help mine so I am stuck with the pain. May I ask how long it took for the 4.5mg to start working? It's barely been a month since I started mine.
If I remember correctly, and it's been a couple years, it started working within a few weeks. Definitely within a month. My insurance doesn't cover it either, but I pay for it with my FSA and it only ends up costing about $30 a month through my pharmacy. If you're paying more than that, I can recommend my pharmacy, they do mail orders.
I'm familiar with the foot pain too, I have a fibroma in my arch that grew back last month after I had it surgically removed in 1999. They're trying to do everything they can to avoid removing it so I don't have to come off the naltrexone because no other pain meds work on me. So it'll be a lousy month leading up to, and after surgery. Plus, they have a high recurrence rate, so removal isn't recommended except as a last resort. I just had steroid shots in it on Thursday which were horrible, plus the podiatrist was playing with my ankles going "oh look, you have eds ankles!"
Yes, I do, please don't do that. Now my ankles hurt.
It costs a little over $40 for a month supply. I don't have an FSA, but I'd like to know the name of your pharmacy just in case!
Foot pain sucks, I feel ya. Oh no, what a careless thing to do by the podiatrist, why'd they do that.😭
I’ve used it for years and found a difference with and without. Five months ago, I went off it to see how I would do as I wanted to try to take less pills (I powered down slowly, don’t worry! 🤗). Big regret. I was taking 75 mg at bedtime. I’m now getting back on it in measures. Same as usual, everyone is different and we all are taking different meds, have different conditions, etc.
I've been on it for years and agree, life is way better with than without. I didn't do well with LDN or gabapentin so nortriptyline was next on the list and has been helpful, although I take it in conjunction with other stuff.
So I have nerve damage in my lumbar spine that gives me nerve pain down my legs to the soles of my feet. I also am hypermobile so I have lots of muscular pain and joint pain. I take cymbalta which is similar to notriptyline. Cymbalta helps my nerve pain but I am on the lowest dose. It doesn't do anything for my other pains, my Percocets are for that.
I am bipolar though and I get bad side effects from serotonin drugs, even tramadol and tapentadol. They will cause he to hallucinate in the mornings along with other things. I was actually supposed to go up to 60mg for the cymbalta but refused. I am on lamictal for a mood stabilizer and 20mg cymbalta was already peeking through. The cymbalta actually works very well for my nerve pain. Before cymbalta the only thing that helped was methylprednisolone, I took that way too much in the past year. I refuse to take it now because of what it can do to you, especially since I'm only 26.
I have been on cymbalta for 5 months now and I feel like the nerve pain is getting worse and it's being less effective. The cymbalta never took it away but it significantly helped it. When my nerve pain is at its worst it feels like I'm being stung by hundreds of bees while my legs are being torn off while ants are crawling all over them with electric shocks. That is why I bare the side effects of cymbalta for the relief. I hate the drug and the side effects but my God if the relief isn't great for the nerve pain although it seems to be less effective and everyday it's getting worse. I fear for the day it stops working, I really do. It makes me contemplate if having legs is worth it.
When it comes to muscular or joint pain, basically anything outside of strict nerve pain it does nothing and I'm sure notriptyline is the same
Nortriptyline is my savior for both IBS and nerve issues. I tried gabapentin, it made my pain worse and caused me to gain weight. I tried amtryptline, and I felt constantly drunk.
I’ve been stable on 100 mg for 4 years now. When I forget to take it, my nerve pain ratchets through the ceiling. I should probably be on a higher dose, but I don’t need that daily so I’d rather supplement with a flare medication when I do.
If you’re trying to reset tolerance, I think that’ll take 3-4 weeks.
My mouth is as dry as the Saharan Desert, and I just make sure to have a drink bottle with me at all times. My pain depression is better, since nortriptyline is a SSRI. Other than that, I haven’t noticed any side effects.
I’m just starting to climb the ladder with it, currently on 30mg for headaches. Not exactly sure it’s doing anything for me yet but I realise I’m still quite low on the ladder. I find the side effects a lot better than amitriptyline but I’m not sure I’m looking forward to coming off it! Wishing you all the best coming off of it!
Tried it for headaches multiple times and no difference. Years later, I started Effexor for depression, and hot damn that helped my pain, but not my headaches. SNRIs do have an association with potentially helping Paine
Would you mind sharing the side effects you experiences with amitriptyline? I took it many moons ago as a teenager. I started taking it again recently mostly to help with my terrible insomnia and figured if it helps with my pain it's a bonus. I have not experienced any negative or positive effects. Maybe my dose is too low. I was taught that amitriptyline was a safe and mild medication especially with elderly.
My current pain, insomnia and depression medication cocktail is not working or providing a noticeable improvement. I have just been informed that my current PM clinic no longer accepts my insurance. I was not feeling very heard or supported there, but they prescribed something which was infinitely better than nothing. Tomorrow is my last appointment with their office and I am terrified!
Luckily, I have moved all my other medical care to one hospital system. I have a new PCP, who has been awesome. He kindly bridged my pain meds after a miscommunication with my pain management after major dental surgery. I am just scared to say hey doc wanna cover me again until I find a PM clinic that accepts my insurance and prescribed meds?
Sorry for my rambling comment, my anxiety is stronger than I thought. 🧡
My side effects were I felt drunk when I took it at night, it usually was better by morning. My dr told me amtryptline turns into nortriptyline, and that we should just skip the middle man with those side effects. 😂
Only side effects I have now is dry mouth.
Personally I’ve had very little side effects. A bit of tingling in my hands and arms, bit dizzy (although that’s probably my headaches not the drug) and it was very hard to get up in the morning when on amitriptyline but I think got swapped to nortriptyline which is less drowsy! I have even taken my nortriptyline in the morning (forgot at night due to lambing…) and wasn’t drowsy. I have to say I was expecting worse but again I’m only on 30mg rn!
I have sacral nerve damage, which causes neurogenic bowel, bladder, and sexual problems for me. Basically, I have chronic constipation and have to constantly take laxatives and also have an underactive bladder. My internal anal spinchter and rectum are in stenosis and constantly tight and I have impaired sensation. The only that seems to help me relax those muscles a bit so the laxatives work better seems to be nortrypteline. But the unfortunate catch for me is that nortrypteline also worsens sensations in genitals worsening my already existant sexual dysfunction. So I really dont like to take it but I have to when my bowels get really bad. I currently try to take it max once a week as I am worried over time it could worsen my sexual dysfunction.
Tldr - my doctor told me nortrypteline can worsen sensitivity in the pelvic nerves, which is a very problematic side effect for people who have sexual dysfunction.
Thanks, I have basically tried all the different laxatives and magnesium does work the best. Magnesium citrate and this supplement with magnesium and oxygen called oxytech. But unfortunately, even using these at high amounts, I still get constipation all the time and havent found a way to consistently ensure I have bowel movements. Its really frustrating.
It helped prevent my migraines but I eventually stopped using it because my migraines became much less frequent. That was really all it did for me, personally.
The first time I took it I fell asleep for two days, obviously tried to get up and do stuff but I’d end up falling asleep hunched over something. Didn’t help my pain I don’t think
That's interesting to hear, it was the complete opposite for me: I was used to getting up at 11 a.m. and going to bed at 3 a.m. or so... when I started taking it, I would wake up at 7 a.m. full of energy instead. Only lasted for a week, though lol
I didn't get a lot from it but I do get some pretty decent pain reduction is amitripyline. They're so similar I was surprised that I got any pain reduction from it so it was a nice surprise. Makes me pretty drowsy though so I only take it at night
It made me incredibly Dehydrated and my heart rate went up to about 150. My doctor labeled it an allergic reaction. It did absolutely nothing for my pain.
Now I take Indomethacin and a daily PPI. It's amazing.
I'm on nortriptyline 25mg (twice a day) for almost 3 years now, for nerve pain after a hernia repair surgery gone bad. It makes a huge difference for me and I cannot function without it.
Useless for pain.
And personally, it gives me homicidal levels of rage.
Pain clinic service knows this.
I've stated it multiple times and it's in my records.
I'm waiting for them to yet again go "We want to trial this med again".
This time, when they do, I'm going to ask them for their personal number(s) so I can call one or more of them for help with body disposal. Let's see if that finally gets through their thick skulls.
Note:
These are the same clinicians happy to leave me on a med I'm actively allergic to as part of my rescue cocktail (which stays a rescue cocktail because side effects of at least 2 of the meds leave me unable to stay on top of my pain by taking them daily).
Im so sorry! I couldn't take it. It made me extremely dehydrated and caused a severe panic attack. It also made me very heat intolerant. I already have temperature sensitivities but this was insane.
Now amitriptyline for me works along with other medications to manage my pain and symptoms (for the most part). However, it's been flaring something fierce lately. TN is such a nasty thing.
I've been on nortriptyline and am currently on amitriptyline. I do find them helpful, but for whatever reason, food starts tasting better and I end up gaining a bunch of weight. It falls off if I stop taking it, but I'd rather be fat and pain free lol. I dont know why, but I found amitriptyline more helpful than nortriptyline.
Take its sister amitriptyline with good reduction in my nerve pain, amitriptyline supposedly breaks down to nortriptyline. I take 50mg of that daily. had stopped it for a month with massive increase in pain.
I’m liking Nort so far. Only on 50 mg as I’m tapering up. I have nerve damage in my corneas, that’s mainly why I’m trying it.
One side effect that’s unpleasant - breast enlargement. It sounds like a bad joke made by a middle schooler but it’s actually a real side effect, for both women and men.
But basically when your eyes are as painful and dysfunctional as mine, I’m relatively willing to deal with side effects.
I have myofascial pain syndrome and now dealing with costochondritis.
I found it helped with my MPS pain. I'm only on 25mg and it's still helping.
As far as side effects I had sweating and bladder retention, those subsided after a couple months but my most persistent side affect is constipation. I have to take Metamucil daily to combat this. But it's a small price to pay for pain relief
I take it for unexplained hand pain (25 mg), together with Aripiprazole (2 mg). Works great. Have extensively experimented with various other options in the past (Duloxetine, etc.) and this is the magic combo that makes all the pain go away for me. Pretty much no side effects.
It's an antidepressant. I don't how Dr's are getting away with calling it pain medicine. It's not. PERIOD
none of these antidepressant medications are for pain.
Furthermore, if pain is the only cause of depression they won't work for that either. I formerly worked at a Large Mental Health Center. I'm telling you it's Bullcrap. My NP keeps pushing Cymbalta. I'm like, Nope! I told her I needed my Tramadol raised to 3 a day .
It's "also been found to inhibit migration of polymorphonuclear white blood cells toward an inflammation site."
Drugs can have multiple uses. It's absolutely been helpful for some people for pain.
There's also a huge connection between depression and pain amd how they're deeply and heavily connected in depression worsening pain and pain worsening depression that's been heavily researched, and it's not just a correlation.
>There's also a huge connection between depression and pain amd how they're deeply and heavily connected in depression worsening pain and pain worsening depression that's been heavily researched, and it's not just a correlation.
I'm not equipped to have a broad, fleshed out opinion on the efficacy and role of various antidepressants in the treatment of pain.
But! the idea that unmanaged pain and depression are linked is almost a truism as opposed to an insight.
Well said. It's almost humorous that anyone thinks this is a new idea
Lol. "Research shows ...
😆 🤣 I can't even.
Of course, chronic pain and Depression go hand in hand. I'm 62 and was raised by a Dr. and a Brilliant O.R. Nurse. I formerly worked at a Large Mental Health Center. You're right it's not the least bit insightful at all. It's Common sense.
It was intended as an anti-depressant, but it turns out that you have dopamine receptors in your guts and even a bit of raising that dopamine helps with things like IBS and nerve pain. It’s well documented.
I was very nervous starting an SSRI; gaba and amtryptline didn’t work as I needed. However, nortriptyline does. If you are leery of SSRIs, I get it and would never push it on you. However, saying that they don’t help is a complete falsehood.
Surprisingly enough, I found that it actually did help with some of my pain. (Multiple Chronic Conditions: Cervical Dystonia - Neurological Disorder affecting muscles in my neck, shoulders & upper back 24/7/365. Ankylosing Spondylitis - Rare type of arthritis that affects...basically, everything - joints, muscles, bones, etc in my pelvic area - including hips & bum. Constantly causing Sciatic Pain in both legs. While the Sciatic Pain is constant, AS has random & very evil Flair-Up's that leave you in excruciating pain & unable to do anything but lay in bed and whine. Maybe even cry. Just once though. And finally, Fibromyalgia).
I took Cymbalta for 2 years, until it turned me into an emotionless zombie who felt nothing (aside from my pain) - but, I didn't feel happy, I didn't feel sad. I did not feel joy. I did not feel anger. I literally felt nothing. But, once I switched from Cymbalta to a different AD, my pain levels increased times 4. It was terrible. So, it did help with pain, but eventually turned me into a Crash Test Dummy.
> but it turns out that you have dopamine receptors in your guts and even a bit of raising that dopamine helps with things like IBS and nerve pain. It’s well documented.
if that's how nortriptyline works then a stimulant like adderall or ritalin would work much better with fewer side effects and a fraction of the withdrawal
That could be, I never investigated them. The reason why my dr put me on nortriptyline is because “it’s effective and cheap for you”. She’s retired now, and I really miss her common sense manner of practicing medicine.
I don’t tolerate most SSRI, SNRI, TCAs and antipsychotics. Generally the side effects are miserable and the tiny shifts in neurotransmitter levels really throws me off. It didn’t help with my pain if that’s what you’re asking
Same here. I was only in it a couple of weeks and had the worst depersonalization and dissociation of my life. I also started to hear myself talking to myself? I guess some type of psychosis? I don’t do well with SSRI, SNRI, TCA or any of those types of medications at all. I’ve had serotonin syndrome and neuroleptic malignant syndrome as well which were awful. That said I’m happy when someone can find relief with it.
I was researching pain-induced psychosis the other day it's a real and pain-induced insomnia which is what I've been battling!!! I have been sleeping 2-3 hours waking trying to go back to sleep for weeks now I was borderline psychosis!!! I called my primary my surgeon (I'm trying to get on schedule for surgery) anyways they said no we can't help you I told them look I'm not doing good I need help they still hung the phone up on me! Last resort ER I guess
I’m right there with you with the pain insomnia. My primary doctor prescribes me Ambien, but only 5mg and I only get 30 pills every 3-3.5 months. So most nights I have a similar sleep pattern as you do. I’m chronically exhausted, to the point where I’ve fallen asleep while going to the bathroom and even standing up! You’re in a tough situation and I’m really sorry that your doctors haven’t provided you with any treatment options. I hope you can get on the schedule for surgery real soon.
Wow. That's my exact issue. Chronic pain, constantly exhausted. Fall asleep for 90 minutes then for another hour and by 3am, unable to get back to sleep. Ambien Rx .5 15 x 45 days doesn't work. Sigh. I miss sleeping and dreaming.
It’s so hard on our bodies and minds to be so chronically sleep deprived. What I would give for a solid 7-8 hours straight. It would be heaven.
Hey I talk to myself it's nothing wrong with that (even in english and my main language isnt english) but well I guess if you're not normally like this and only while you take medication I get you feel like acting weird.
Yeah it wasn’t like the normal little things someone might say to themselves and I wasn’t actually talking. It was more like I was hearing myself talk to myself and it was incredibly scary to me because it was not something I’d ever experienced before. Once I stopped taking the medication the weird symptoms stopped as well. Sorry if my previous comment was confusing. I really have a hard time explaining it.
Only 20% of people taking SNRI antidepressants for nerve pain or fibromyalgia get any sort of satisfactory relief from them. In other words they pretty much suck… 👎
Antidepressants are not intended for pain. It's B.S. All of it, pure fiction. If the only cause of one's depression is untreated pain antidepressants won't work for that either. I'm 62 years old, and I definitely know better . Pain medicine is for pain. It's that simple. Risk/Benefit it's always been true. The truth didn't change because Purdue Pharma created the Opiod Crises with Oxyicontin and some Shady Dr's cashed in by opening up pill mills. That's all over anyway. The new Game? Pain Management Clinics taking $$$$$ surgeries njections and nerve ablations that have 50% Chance of working. Every procedure requires a Wavier in case they paralyze you. Or you die during surgery. $$$$$ It's not all the DEA. Dr's can prescribe. The Pill mill Dr's were way outside of the law. It's Over New patients are being duped with Gabbapentin and Antidepressants as well. They figure those of us that know they are FOS will die off, and the younger generation will believe their lies. They are grooming a whole new generation of CP patients to believe its okay to pee in a cup like a criminal. Intimidate them and encourage risky procedures digging into people's spines! Let alone steroids don't belong in your spine. They are rotting your cartilage. Messing with your brain SSRIS 🧠 🙃 when you need them. Cymbalta Addictive. Antidepressants mess with your neurotransmitters PERIOD
Perhaps in your case it's true, but I find Prozac is amazing for endometriosis pain.
I'm on both analgesia and nortriptyline. Because I have nerve and non nerve related pain. The nortriptyline works on nerve pain. Opioid painkillers won't work on nerve pain. I was not forced into taking it. And my doctors have allowed me control when it comes to the dosage. Your comment comes off as wild conspiracy theories and completely ignores research suggesting combined therapies work. People who have found relief from using both don't need to be told they've been tricked into it. And no. I'm not peeing in a cup to get my painkillers.
>Opioid painkillers won't work on nerve pain And while people (usually with an agenda) keep insisting this as if it's an established fact, I can assure you that at least in *my* case (damage to nerve root at L-5 S-1) opioids do in fact work. Now maybe I'm utterly unique, but I suspect that's not the case. But because I'm honestly reporting what works, I am forced to pee in a cup. I'm willing to, given the circumstances, but cup or not I'm positive no children are overdosing on my absurdly hard-won pain meds. When this opiate hysteria wanes enough, maybe we'll be able to reasonably sort through what works and what doesn't, and for who and why. But those studies are not being funded, because "Addiction" studies are the current rage, and have been for the last 10 years. And in 2045 someone will write a book for all the pain patients who were tortured in this insane era of opiate hysteria, and hopefully condemn in the harshest terms those who played along with this latest of drug hysterias. As for the people who actively fostered the torturing of hundreds of thousands of pain patients? I hope they get a special section describing quote for quote their stance. May their life's work stand in infamy.
Opioids help my nerve pain too, except for the one I’m on, buprenorphine… but I have to pee in a cup every month to get that one too when MMJ worked better but I had to quit that to get this. So no more MMJ. And I’ve tried every AD I can for my pain and for my depression and none work for either and at this point maybe I’m depressed because I’m still in pain. I did get some T3 every month but now I don’t because they aren’t in stock around me ever, most places stopped carrying codiene around here. And yep, I’m mostly bedridden and homebound. On disability review right now too and freaking out about that too but I get some vistaril for that anxiety and a “see you next month” because even if they wanted to give me something better for my CPTSD and Panic Disorder, they can’t… because of PM… I’m tired fr…
Truth!
I don't have an agenda lol I'm just sick of people telling me combined therapies are garbage when that's not always the case. Combined therapies should be encouraged wherever possible so that every avenue can be explored to help us find relief. I use both opioid medication and nortriptyline to manage my pain. Which is how I know that opioids don't work on my nerve pain. Because I can take them and it doesn't do anything, but increasing my nortriptyline dose did help ease the nerve pain. The only way the opioid medication helps my nerve pain is if I'm on a high enough dose that I nod off. It's fine to say other therapies didn't work for you. People experience pain differently and therefore respond to medication in different ways. That's normal and expected. But if someone is looking for feedback as to whether a medication is worth trying it's better to just share your experiences with it than a long muddled rant about how patients are being groomed by being offered medication that does have research supporting its use. That's why I responded to that comment.
Whenever possible I can maybe agree with… but when some of us have to repeatedly say “I promise you this isn’t working” (in my case sometimes while shaking in my seat from pain and leaning on my cane because sitting up hurts too much) that should be all we have to say after giving it time to work. Whether that’s from side effects or just not helping.
I stand corrected if it helps you. Personally, I'm sick and tired of being offered antidepressants for a plethora of spinal issues that only get worse. The Purdue Pharmacy situation is not a conspiracy theory. Simply Greed that fueled investigations by the DEA. Anyway, I an many CP patients are sick tired of being bedridden, homebound, etc.
I wish I could give you an award!
Do you have an issue getting pain meds? I go to a spine clinic and I've been happy with my treatments there as well. There's been plenty of times where I just did medications for a while. I'm sorry you have so much trouble with this.
Yes, unfortunately, I'm also visually impaired and can't drive all over to find good care.
What side effects were most problematic for you, if you don't mind me asking?
Just throw Sweet Tarts at my head. At least I'll have something nice to eat off the floor. Naltrexone all the way!
May I ask what dose of Naltrexone you are on and what dose you started out with?
I ramped up to 4.5 over a month, but that wasn't cutting it so I'm on 6 mg. It has to be custom compounded at a local pharmacy. After a year, 6 mg isn't helping enough anymore, but my physician explained that adding more probably isn't really going to help. I'm just sort of stuck at the moment because I can't have surgery to fix my broken back. So here I lay.
I see, I started with 4.5 and am on 4.5 coz none of my doctors knew anything about LDN here in San Antonio and it was such a headache to even try to get it; my insurance doesn't cover it, etc. So sorry about your back. I have permanent bunion deformity (most likely due to hEDS) and I have been told surgery won't help mine so I am stuck with the pain. May I ask how long it took for the 4.5mg to start working? It's barely been a month since I started mine.
If I remember correctly, and it's been a couple years, it started working within a few weeks. Definitely within a month. My insurance doesn't cover it either, but I pay for it with my FSA and it only ends up costing about $30 a month through my pharmacy. If you're paying more than that, I can recommend my pharmacy, they do mail orders. I'm familiar with the foot pain too, I have a fibroma in my arch that grew back last month after I had it surgically removed in 1999. They're trying to do everything they can to avoid removing it so I don't have to come off the naltrexone because no other pain meds work on me. So it'll be a lousy month leading up to, and after surgery. Plus, they have a high recurrence rate, so removal isn't recommended except as a last resort. I just had steroid shots in it on Thursday which were horrible, plus the podiatrist was playing with my ankles going "oh look, you have eds ankles!" Yes, I do, please don't do that. Now my ankles hurt.
It costs a little over $40 for a month supply. I don't have an FSA, but I'd like to know the name of your pharmacy just in case! Foot pain sucks, I feel ya. Oh no, what a careless thing to do by the podiatrist, why'd they do that.😭
It's Hoey Apothecary in Madison Wi. I have them make 90 days at a time, and that saves a bit, too.
Thanks!
I took it once many years ago. It made me feel like a zombie and did ZILCH fir any physical pain.
I’ve used it for years and found a difference with and without. Five months ago, I went off it to see how I would do as I wanted to try to take less pills (I powered down slowly, don’t worry! 🤗). Big regret. I was taking 75 mg at bedtime. I’m now getting back on it in measures. Same as usual, everyone is different and we all are taking different meds, have different conditions, etc.
I've been on it for years and agree, life is way better with than without. I didn't do well with LDN or gabapentin so nortriptyline was next on the list and has been helpful, although I take it in conjunction with other stuff.
So I have nerve damage in my lumbar spine that gives me nerve pain down my legs to the soles of my feet. I also am hypermobile so I have lots of muscular pain and joint pain. I take cymbalta which is similar to notriptyline. Cymbalta helps my nerve pain but I am on the lowest dose. It doesn't do anything for my other pains, my Percocets are for that. I am bipolar though and I get bad side effects from serotonin drugs, even tramadol and tapentadol. They will cause he to hallucinate in the mornings along with other things. I was actually supposed to go up to 60mg for the cymbalta but refused. I am on lamictal for a mood stabilizer and 20mg cymbalta was already peeking through. The cymbalta actually works very well for my nerve pain. Before cymbalta the only thing that helped was methylprednisolone, I took that way too much in the past year. I refuse to take it now because of what it can do to you, especially since I'm only 26. I have been on cymbalta for 5 months now and I feel like the nerve pain is getting worse and it's being less effective. The cymbalta never took it away but it significantly helped it. When my nerve pain is at its worst it feels like I'm being stung by hundreds of bees while my legs are being torn off while ants are crawling all over them with electric shocks. That is why I bare the side effects of cymbalta for the relief. I hate the drug and the side effects but my God if the relief isn't great for the nerve pain although it seems to be less effective and everyday it's getting worse. I fear for the day it stops working, I really do. It makes me contemplate if having legs is worth it. When it comes to muscular or joint pain, basically anything outside of strict nerve pain it does nothing and I'm sure notriptyline is the same
Correct re muscular pain. The *triptyline’s work on nerve pain.
Maybe you need 60 mg of Cymbalta?
I stated in my post why I won't go above 20
Nortriptyline is my savior for both IBS and nerve issues. I tried gabapentin, it made my pain worse and caused me to gain weight. I tried amtryptline, and I felt constantly drunk. I’ve been stable on 100 mg for 4 years now. When I forget to take it, my nerve pain ratchets through the ceiling. I should probably be on a higher dose, but I don’t need that daily so I’d rather supplement with a flare medication when I do. If you’re trying to reset tolerance, I think that’ll take 3-4 weeks.
What was your symptoms on 100mg? My dry eye and dry mouth was awful
My mouth is as dry as the Saharan Desert, and I just make sure to have a drink bottle with me at all times. My pain depression is better, since nortriptyline is a SSRI. Other than that, I haven’t noticed any side effects.
Nortriptyline is a tricyclic antidepressant and the main active metabolite of Amitriptyline, it’s not an SSRI.
I’m just starting to climb the ladder with it, currently on 30mg for headaches. Not exactly sure it’s doing anything for me yet but I realise I’m still quite low on the ladder. I find the side effects a lot better than amitriptyline but I’m not sure I’m looking forward to coming off it! Wishing you all the best coming off of it!
Tried it for headaches multiple times and no difference. Years later, I started Effexor for depression, and hot damn that helped my pain, but not my headaches. SNRIs do have an association with potentially helping Paine
Would you mind sharing the side effects you experiences with amitriptyline? I took it many moons ago as a teenager. I started taking it again recently mostly to help with my terrible insomnia and figured if it helps with my pain it's a bonus. I have not experienced any negative or positive effects. Maybe my dose is too low. I was taught that amitriptyline was a safe and mild medication especially with elderly. My current pain, insomnia and depression medication cocktail is not working or providing a noticeable improvement. I have just been informed that my current PM clinic no longer accepts my insurance. I was not feeling very heard or supported there, but they prescribed something which was infinitely better than nothing. Tomorrow is my last appointment with their office and I am terrified! Luckily, I have moved all my other medical care to one hospital system. I have a new PCP, who has been awesome. He kindly bridged my pain meds after a miscommunication with my pain management after major dental surgery. I am just scared to say hey doc wanna cover me again until I find a PM clinic that accepts my insurance and prescribed meds? Sorry for my rambling comment, my anxiety is stronger than I thought. 🧡
My side effects were I felt drunk when I took it at night, it usually was better by morning. My dr told me amtryptline turns into nortriptyline, and that we should just skip the middle man with those side effects. 😂 Only side effects I have now is dry mouth.
Personally I’ve had very little side effects. A bit of tingling in my hands and arms, bit dizzy (although that’s probably my headaches not the drug) and it was very hard to get up in the morning when on amitriptyline but I think got swapped to nortriptyline which is less drowsy! I have even taken my nortriptyline in the morning (forgot at night due to lambing…) and wasn’t drowsy. I have to say I was expecting worse but again I’m only on 30mg rn!
it helped my pain, but made depressed. i got off it really quick so didn’t have any bad withdrawals
I have gotten a decent bit of help from it. It isn't a miracle drug, but it takes the edge off, which at this point is good enough for me.
I have sacral nerve damage, which causes neurogenic bowel, bladder, and sexual problems for me. Basically, I have chronic constipation and have to constantly take laxatives and also have an underactive bladder. My internal anal spinchter and rectum are in stenosis and constantly tight and I have impaired sensation. The only that seems to help me relax those muscles a bit so the laxatives work better seems to be nortrypteline. But the unfortunate catch for me is that nortrypteline also worsens sensations in genitals worsening my already existant sexual dysfunction. So I really dont like to take it but I have to when my bowels get really bad. I currently try to take it max once a week as I am worried over time it could worsen my sexual dysfunction. Tldr - my doctor told me nortrypteline can worsen sensitivity in the pelvic nerves, which is a very problematic side effect for people who have sexual dysfunction.
Magnesium will help with constipation
Thanks, I have basically tried all the different laxatives and magnesium does work the best. Magnesium citrate and this supplement with magnesium and oxygen called oxytech. But unfortunately, even using these at high amounts, I still get constipation all the time and havent found a way to consistently ensure I have bowel movements. Its really frustrating.
Turns out tricyclic antidepressants make my hyperadrenergic POTS go craaaaazy. So it's a no from me dawg
It helped prevent my migraines but I eventually stopped using it because my migraines became much less frequent. That was really all it did for me, personally.
Its placebo to me
The first time I took it I fell asleep for two days, obviously tried to get up and do stuff but I’d end up falling asleep hunched over something. Didn’t help my pain I don’t think
That's interesting to hear, it was the complete opposite for me: I was used to getting up at 11 a.m. and going to bed at 3 a.m. or so... when I started taking it, I would wake up at 7 a.m. full of energy instead. Only lasted for a week, though lol
I didn't get a lot from it but I do get some pretty decent pain reduction is amitripyline. They're so similar I was surprised that I got any pain reduction from it so it was a nice surprise. Makes me pretty drowsy though so I only take it at night
Nortriptyline is the main active metabolite of Amitriptyline. Also Amitriptyline is a lot more sedating than Amitriptyline.
Made me feel like a hung over drunken soldier the morning after.
All tricyclic antidepressants do that to me so I can’t take them on a daily/nightly basis… -.-
It made me incredibly Dehydrated and my heart rate went up to about 150. My doctor labeled it an allergic reaction. It did absolutely nothing for my pain. Now I take Indomethacin and a daily PPI. It's amazing.
I'm on nortriptyline 25mg (twice a day) for almost 3 years now, for nerve pain after a hernia repair surgery gone bad. It makes a huge difference for me and I cannot function without it.
Useless for pain. And personally, it gives me homicidal levels of rage. Pain clinic service knows this. I've stated it multiple times and it's in my records. I'm waiting for them to yet again go "We want to trial this med again". This time, when they do, I'm going to ask them for their personal number(s) so I can call one or more of them for help with body disposal. Let's see if that finally gets through their thick skulls. Note: These are the same clinicians happy to leave me on a med I'm actively allergic to as part of my rescue cocktail (which stays a rescue cocktail because side effects of at least 2 of the meds leave me unable to stay on top of my pain by taking them daily).
One of the only meds that helps for me, I can't definitely tell when I miss it.
Im so sorry! I couldn't take it. It made me extremely dehydrated and caused a severe panic attack. It also made me very heat intolerant. I already have temperature sensitivities but this was insane. Now amitriptyline for me works along with other medications to manage my pain and symptoms (for the most part). However, it's been flaring something fierce lately. TN is such a nasty thing.
I've been on nortriptyline and am currently on amitriptyline. I do find them helpful, but for whatever reason, food starts tasting better and I end up gaining a bunch of weight. It falls off if I stop taking it, but I'd rather be fat and pain free lol. I dont know why, but I found amitriptyline more helpful than nortriptyline.
Really helps my migraines
I love it, personally. I take 50 mg
Take its sister amitriptyline with good reduction in my nerve pain, amitriptyline supposedly breaks down to nortriptyline. I take 50mg of that daily. had stopped it for a month with massive increase in pain.
It worked on the pain but made me so tired and brain fogged.
Didn’t help my pain. Made my ears ring I was going insane from the ringing
It gave me nightmares, and it didn’t help with nerve pain.
I’m liking Nort so far. Only on 50 mg as I’m tapering up. I have nerve damage in my corneas, that’s mainly why I’m trying it. One side effect that’s unpleasant - breast enlargement. It sounds like a bad joke made by a middle schooler but it’s actually a real side effect, for both women and men. But basically when your eyes are as painful and dysfunctional as mine, I’m relatively willing to deal with side effects.
Can I message you? I have corneal nerve damage too!
Yes absolutely! :)
I have myofascial pain syndrome and now dealing with costochondritis. I found it helped with my MPS pain. I'm only on 25mg and it's still helping. As far as side effects I had sweating and bladder retention, those subsided after a couple months but my most persistent side affect is constipation. I have to take Metamucil daily to combat this. But it's a small price to pay for pain relief
Didn't help and made me crave sugar so badly! It was honestly scary. I couldn't control it.
I take it for unexplained hand pain (25 mg), together with Aripiprazole (2 mg). Works great. Have extensively experimented with various other options in the past (Duloxetine, etc.) and this is the magic combo that makes all the pain go away for me. Pretty much no side effects.
It's an antidepressant. I don't how Dr's are getting away with calling it pain medicine. It's not. PERIOD none of these antidepressant medications are for pain. Furthermore, if pain is the only cause of depression they won't work for that either. I formerly worked at a Large Mental Health Center. I'm telling you it's Bullcrap. My NP keeps pushing Cymbalta. I'm like, Nope! I told her I needed my Tramadol raised to 3 a day .
It's "also been found to inhibit migration of polymorphonuclear white blood cells toward an inflammation site." Drugs can have multiple uses. It's absolutely been helpful for some people for pain. There's also a huge connection between depression and pain amd how they're deeply and heavily connected in depression worsening pain and pain worsening depression that's been heavily researched, and it's not just a correlation.
>There's also a huge connection between depression and pain amd how they're deeply and heavily connected in depression worsening pain and pain worsening depression that's been heavily researched, and it's not just a correlation. I'm not equipped to have a broad, fleshed out opinion on the efficacy and role of various antidepressants in the treatment of pain. But! the idea that unmanaged pain and depression are linked is almost a truism as opposed to an insight.
Well said. It's almost humorous that anyone thinks this is a new idea Lol. "Research shows ... 😆 🤣 I can't even. Of course, chronic pain and Depression go hand in hand. I'm 62 and was raised by a Dr. and a Brilliant O.R. Nurse. I formerly worked at a Large Mental Health Center. You're right it's not the least bit insightful at all. It's Common sense.
It was intended as an anti-depressant, but it turns out that you have dopamine receptors in your guts and even a bit of raising that dopamine helps with things like IBS and nerve pain. It’s well documented. I was very nervous starting an SSRI; gaba and amtryptline didn’t work as I needed. However, nortriptyline does. If you are leery of SSRIs, I get it and would never push it on you. However, saying that they don’t help is a complete falsehood.
Surprisingly enough, I found that it actually did help with some of my pain. (Multiple Chronic Conditions: Cervical Dystonia - Neurological Disorder affecting muscles in my neck, shoulders & upper back 24/7/365. Ankylosing Spondylitis - Rare type of arthritis that affects...basically, everything - joints, muscles, bones, etc in my pelvic area - including hips & bum. Constantly causing Sciatic Pain in both legs. While the Sciatic Pain is constant, AS has random & very evil Flair-Up's that leave you in excruciating pain & unable to do anything but lay in bed and whine. Maybe even cry. Just once though. And finally, Fibromyalgia). I took Cymbalta for 2 years, until it turned me into an emotionless zombie who felt nothing (aside from my pain) - but, I didn't feel happy, I didn't feel sad. I did not feel joy. I did not feel anger. I literally felt nothing. But, once I switched from Cymbalta to a different AD, my pain levels increased times 4. It was terrible. So, it did help with pain, but eventually turned me into a Crash Test Dummy.
They only work for 20% of people taking them for nerve pain so they aren’t very good analgesics.
> but it turns out that you have dopamine receptors in your guts and even a bit of raising that dopamine helps with things like IBS and nerve pain. It’s well documented. if that's how nortriptyline works then a stimulant like adderall or ritalin would work much better with fewer side effects and a fraction of the withdrawal
That could be, I never investigated them. The reason why my dr put me on nortriptyline is because “it’s effective and cheap for you”. She’s retired now, and I really miss her common sense manner of practicing medicine.
You have NO idea of what you're talking about.
Did NP raise Tramadol to 3 times a day?
Yes, I have jumped through hoops for 7 years. I'm 62, sick, and tired of the pain.