Has anyone here tried amitriptyline and did it help? I've seen some significant improvement (hallelujah) with this which affects your acetylcholine which can speed up signals to the body and something I've wondered about with FND. I got ill too just after I gave up a bad coffee addiction and coffee can keep your acetylcholine down if high which is what may happen in FND. Starting coffee again unfortunately did not reverse this effect. Coffee isn't great for the hormones anyway! :)

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  • Hi rach

    I take 30mg.... my neurologist (who works closely with dr stone) said it can be very helpful and can be used up to dose of 70mg... I started on 10mg and she's put me on 30mg now , my GP wouldn't but she overruled him :) so it's good

    For sleep it's trial and error but majority of people take it 12 hours before you want to sleep and it works best tht way I have found

    Hope that helps

    God bless


  • Hi Andy yes very helpful thank you. I'm only on 10 milligram just before bed which I find very helpful :) PTL

  • Hi

    Who is your Neurologist - if you don't mind saying. Mine is Jon Stone and he has always said that there are no drugs to help. My seizures are just getting worse (2 already today) and I know Dr Stone says to live a normal life and not hide away but falling over or being scared of looking like a complete pratt if you do in public is quite hard to do. I've always been very fit and good at most sports. I've given up almost all of them as they just brought on an attack. I was running (long distance) but every so often would have a drop attacked and re-arrange my face! I'm just going to say sod it and just go for a run. If a seizure comes on there's always knitting!!. Sorry, gallows humour. No dismissing the dabiliting effects. Lou

  • Hi I actually see a colleague of doctor Stone he's very good and he was the one who prescribed amitriptyline. I don't know I guess these things are worth a try but it's certainly has been life changing for me x :)

  • Does this help with tremors and jerks?

  • Hi there it could in principle but it might be something worth talking about with the doctor as it's not a symptom I get with my FND. Unless somebody else here knows? Do you know andyglasgow2016 ?

  • No I don't know Andy, I live in Australia.

  • No sorry I was asking Andy if he knew and had any experience in that area? :)

  • I've not experienced seizures etc... I'm only affected lower half of body.

    Medicine wise... I know dr stone is anti meds but my consultant, dr Murray... she is fine with me being on 300mg pregabalin for pain twice a day... and celecoxib 200mg which is used also for arthiritus.

    I've never had a seizure but I would get jerks and shakes in legs etc when standing... these have settled now due to getting decent pain meds. I do get some shakes tho when I've done too much and I'm really sore.

    It's a battle to get correct meds but hope you can get the help from your GP

  • Thanks for taking the time to reply it's always good to hear what others are finding.

  • I've not been prescribed any drugs yet either. I was kind of hoping I would be although not sure what! I just take paracetamol and ibruprofen for pain but it doesn't do much. I might write these down and ask the neurologist next time...thanks.

  • Amitriptyline helps with pain as well :)

  • I take 25 - 30 mg Amitryptiline every night. 25 mg is not quite enough to stop the PTSD chatter inside my head, which can set of episodes, but 30mg every night ends up giving me the jaw clamping side effect which in turn triggers lots of seizures. So I have to navigate a narrow path between the two extremes.

    I have tried all the newer meds that work on Serotonin, SSRIs, SNRIs etc and they all give me jaw clamping, a very common listed side effect of these meds, but i get clamping of all my muscles. Sort of like taking super strong steroids to bulk up my muscles in just 24 hours, but it's so painful and I almost break teeth with the incredible strength of the muscle I rarely take any of this class of medication for more than 24-36 hours.

    I take Celebrex (Celecoxib), and very high doses of Magnesium to prevent muscle damage. Without it, I have bad shakes whenever I try to move my muscles, and I don't have the muscle strength to walk over gutters from the street to the footpath. I also get massive very painful 'ropes' in my muscles if I don't take enough Magnesium. So I take 3-8 big tablets every day. The more spasms I get, the more I take. The more damage I have from a seizure, the more I take - Magnesium is excellent at repairing damaged muscles.

    I also take Vitamin B12, even though my levels are in the normal range. If I don't, I get visual disturbances and other neurological issues.

    harley2010, I live in Australia. Ipswich, near Brisbane, Qld. We have quite a lot of Aussies in the FND AU/NZ Facebook group.

    There aren't many meds that work with all FND people. What works for some variations of FND actually makes other people worse. Vitamin B12 and Magnesium are two that usually give spectacular results for most people, are well worth exploring, irrespective of blood tests (most FND people have B12 levels in the lower half of normal, still considered normal, but also causing significant symptoms.)

  • Hi there thanks for answering on the post. It's interesting to see what you write as I can't tolerate magnesium at all but I do take a B complex which helps with neuropathy. We're all different I guess. Guess we have to give things a try to see what helps. When you talk about muscle damage do you mean from the seizure because I didn't know that was a problem with amitriptyline?

  • Amitryptiline affects the serotonin levels. Anything that affects my serotonin levels give me massive muscle clamping, sort of like a cramp that just won't go. They aren't too painful, unlike cramps, but they are relentless, never letting go voluntarily. Usually these things make my muscles bulk up very rapidly i.e. in just a few hours, after taking just one tablet, though I'm taking a 'barely therapeutic dose' of Amitryptiline so I don't get this side effect now.

    Everyone reacts differently to different medications, and what works for one can be poison/toxic/wrong for another person. It's really up to you and your doctor to work out through trial and error what the best medications would be for you. Don't be afraid to go back to tweak the dose or to try a different med. You are inside your body - listen to it, and understand the messages it's sending you.

    The real muscle damage I get, torn muscles, ropes and constrictions in the muscles, usually comes from seizures. Mine have very large movements and locking up, and they sort of look like an orgasm that is not sexual or pleasurable. Tonic/clonic? not sure.

    Not had the seizures officially described as it's been years since I last saw a neurologist, and he was worse than useless, very rude, very dismissive, and led to 6 months of anxiety and depression until I was finally able to see a really good psychiatrist who calmed me down. He didn't know anything much about FND or somatisation disorder (my official diagnosis), but reduced my stress levels sufficiently for me to start recovering.

    My muscles were extremely tight for many years before I discovered magnesium. I regularly got them very painfully massaged out every week, because they were so bad. These days I rarely have muscle problems and I can easily massage out any problems I do get, with the help of additional Magnesium.

    Interesting about your reaction to Magnesium. I used to take 2 Calcium tablets a day, until I discovered that it had doubled or tripled my magnesium requirements, so cut back to one a day, allowing me to drop back to a minimum of 3 magnesiums a day. It's all about how each body reacts to different medications. We are all very different.

  • Sounds like you've really had a battle but are coming out the other side which is really good. There's a lot of stuff going on there for you. I'm glad you're able to find things that help though and that you're able to still take a low dose of Amitriptyline. That's all I'm on as well have really felt helpful. The brain to me is just so fascinating! So good to get more understanding and find things that help.... Keep in touch x

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