Thank you, thankfully not on any of the drugs listed on the website. MS has taught me to question every medication and learn as much as possible about positive and negative effects. It's very difficult with no medical knowledge and such diverse opinions amongst medical professionals but worth the effort, so we can at least momentarily think we're in control of our own destiny, even if this is illusory.
It all depends on why you are taking amitriptyline, whether you have side effects and available alternatives. I am not saying everyone who is taking amitriptyline should stop taking it you just need to be aware it comes with potential side effects.
Really interesting article. I was on amitriptyline for 6 years but have now stopped.
Prof G, you mention the risks of PWMS taking anticholinergic drugs - I am on Mirabegron having stopped solifenacin after reading a previous article of yours. The mirabegron is not as effective unfortunately - how does Trospium compare on the anticholinergic scale?
Wow ! I was prescribe amatryptiline by GP who I have never met, over the phone because I had sciatica. I declined after reading about it. I did a lot of Pilates and waited for it to go. It took much longer but it went. What are your thoughts on Baclofen. I have quite a bit of stiffness at the moment due to a relapse and it's getting to me as it's been going on for weeks. I haven't seen my neurologist for 2 years been offered Siponimod but everything has been done via letters. Waiting to take tests.
Yes, for more than 5 yeras. The reason is migraine, but also some form of dermatitis and itching for which no one has determined the cause. It is strange that it is reduced by antihistamines, but also by amitriptyline. A month ago I started to think it was really time to stop using it.
Amitriptyline is also an anti-histamine working on the H1 receptor. It is a pretty dirty drug, in terms of how it works (multiple receptors), which is probably why it is so widely prescribed.
Hi, I've been on Gabapentin (1200 mg/day) for 25 years for partial complex seizures. I was prescribed Amitriptyline 2 years ago for migraines. I know you mentioned both drugs. I've been off balance, difficulty focusing, cognition dysfunction. I also had a head injury after waking up at 3 am and while walking to our den my knee gave out. I tried to keep my balance but crashed head-first into our fireplace mantle. The ER put 6 staples in my head. I believe Amitriptyline has some responsibility because it makes me very woozy. I wish I could get off both medications. I worry about side effects while battling it out with doctors about my wishes. Cathy Chester
I was taking oxybutynin for a while to keep from urinating too much, while also using incontinence briefs to be protected while working at an office job and when going to social functions. Not knowing that I was making things tremendously worse for myself. I was also rationing my water / fluids to lessen trips to the toilet, and any accidents, which was really detrimental for me--this was when I started developing UTIs as a fairly common occurrence. I feel such anguish and regret that I didn't have information like this at the time.
Amitriptyline is not that effective for positive sensory phenomena, i.e. tingling etc. For these symptoms sodium channel blockers (carbamazepine, etc.) and/or gabapentinoids (gabapentin or pregabalin) are better. It does help with central pain syndromes, but duloxetine is as effective with less anticholinergic side effects.
Prof, a leymans question about all of these anti-symptom drugs. My nurse gives me pregablin to calm down the neural pathways. It was explained to me that amitriptiline also 'stops the messages getting through' therefore alleviating symptoms. Is this a positive though? when the CNS is trying to navigate itself around lesions and form new pathways, are we not blunting its chances by 'stopping the messages getting through'. I get muscle twitches from head to toe, mostly in my legs but sometimes completely random. Are these just lemming messages walking along my broken neural pathways? makes me wonder if i avoiding the inhibiting medications whether more would survive = less twitching!
The way these treatments work is very complex. Pregabalin is a calcium channel blocker, which will dampen down the misfiring of nerves and explains why it works as an anticonvulsant. Amitriptyline works via many different mechanisms and alters neurotransmitter reuptake mechanisms and changes how neuronal networks function.
Again it is horses for course and symptomatic treatments do work and can improve troubling symptoms and improve quality of life. For example, improved sleep on low dose amitriptyline may outweigh its negative effects on cognition so improve your QoL. You just need to be aware that it is a balancing act.
That’s so kind of you. I’ve paid you an annual subscription $99 despite not having any income. I don’t drink or smoke, hence with my hubbie (who is my carer) we reckon - YOU are worth investing in.
That hardly counts as a dirty little secret. Psychiatry is full of really dirty secrets. Historically trephining was common. Electroconvulsive therapy used to be common and has only fallen out of favour in the last 25 years. During medical finals I presented a long case to examiners. I explained the paranoid delusion that the patient believed they had been rendered comatose for months at a time. She reported that Psychiatrists had deliberately given her overdoses of insulin to achieve this. I added incredulously that she even called it, “deep insulin”. The examiners looked extremely uncomfortable. They reluctantly admitted that this was a treatment that the patient had undergone for depression. I had misinterpreted the case completely through naivety and a belief in ‘premium non nocere’.
Having read the list, and description of Tizanidine I can't tell if it too is one to avoid if possible. Would you be able to clarify? Thanks very much as always
It is an antispastic drug that is also quite sedating. It is not necessarily about avoidance; more about being aware of the potential side effects and trying to find the sweet spot. The latter is not always easy when it comes to symptomatic oral anti-spasticity agents.
the trouble is when you have terrible nerve pain - but need (and want!) to keep going in life with work/kids/dog/driving/walking a bit - and you've tried all the others. I gave up amit when my children were younger as I needed to be awake in the night for feeds etc. Now I can take it and it helps with the pain. Duloxetine - no thanks - hallucinations and also not fun when you have a drink on it!! (or too much fun lol). on pregablin and baclofen and tysabri as well
This proves to you that it is horses for courses and not all symptomatic treatments work for each and every patient and so does the side effect profile differ.
Been on it probably 8 years. Originally thought that it would cover a multitude of symptoms including TMJ syndrome which I have had since I was a child, facial neuralgia and leg pain. Over time I have noticed difficulty peeing especially first thing, also think it's responsible for night terrors and bowel changes. But can't persuade MS nurse that it needs changing, tried to wean myself off it but can't get below 20mg without the facial neuralgia and leg pain causing issues. Doesn't really help the TMJ syndrome. Now 23 months since I saw Neuro last.
omgoodness! I take it for facial and leg neuralgia. My mom had the same thing.. when i have an attack even the air blowing past my face is excruciating.. It does help keep those attacks down to a minimum. same with the leg attacks. When that flares up i cannot even wear a pair of pants or shorts.. Its horrible. I am sorry you are having side effects tho. I havent had this happen. Thank god because idk what i would do if i had to go back to experiencing these attacks every week. I hope you find relief soon and see your doctor or some doctor soon
Thank you, thankfully not on any of the drugs listed on the website. MS has taught me to question every medication and learn as much as possible about positive and negative effects. It's very difficult with no medical knowledge and such diverse opinions amongst medical professionals but worth the effort, so we can at least momentarily think we're in control of our own destiny, even if this is illusory.
Hi I have been taking 75 mg long term just worried now what do advise
It all depends on why you are taking amitriptyline, whether you have side effects and available alternatives. I am not saying everyone who is taking amitriptyline should stop taking it you just need to be aware it comes with potential side effects.
Really interesting article. I was on amitriptyline for 6 years but have now stopped.
Prof G, you mention the risks of PWMS taking anticholinergic drugs - I am on Mirabegron having stopped solifenacin after reading a previous article of yours. The mirabegron is not as effective unfortunately - how does Trospium compare on the anticholinergic scale?
Trospium only as effects outside the CNS; constipation etc. So it may be worth a try.
Amitriptyline was prescreibed for me for my Trigemenal nerve pain recently. I have thankfully stopped that now and have been prescribed Pregablin.
Wow ! I was prescribe amatryptiline by GP who I have never met, over the phone because I had sciatica. I declined after reading about it. I did a lot of Pilates and waited for it to go. It took much longer but it went. What are your thoughts on Baclofen. I have quite a bit of stiffness at the moment due to a relapse and it's getting to me as it's been going on for weeks. I haven't seen my neurologist for 2 years been offered Siponimod but everything has been done via letters. Waiting to take tests.
Baclofen is also very sedating and affects cognition and reaction times. I will in time cover baclofen in a separate newsletter.
Thank you. I wish there was à non toxic solution !
Yes, for more than 5 yeras. The reason is migraine, but also some form of dermatitis and itching for which no one has determined the cause. It is strange that it is reduced by antihistamines, but also by amitriptyline. A month ago I started to think it was really time to stop using it.
Amitriptyline is also an anti-histamine working on the H1 receptor. It is a pretty dirty drug, in terms of how it works (multiple receptors), which is probably why it is so widely prescribed.
Thank you for the reply, it makes more sense now.
Hi, I've been on Gabapentin (1200 mg/day) for 25 years for partial complex seizures. I was prescribed Amitriptyline 2 years ago for migraines. I know you mentioned both drugs. I've been off balance, difficulty focusing, cognition dysfunction. I also had a head injury after waking up at 3 am and while walking to our den my knee gave out. I tried to keep my balance but crashed head-first into our fireplace mantle. The ER put 6 staples in my head. I believe Amitriptyline has some responsibility because it makes me very woozy. I wish I could get off both medications. I worry about side effects while battling it out with doctors about my wishes. Cathy Chester
You may find this article of interest. It shows that amitriptyline is a risk factor for falls. It refers to the elderly, but applies to pwMS as well.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8872471/
Thanks Dr G. I should have mentioned I'm 65 (was dx at age 28) so I guess I 'm considered elderly! Thanks for the article referral.
I was taking oxybutynin for a while to keep from urinating too much, while also using incontinence briefs to be protected while working at an office job and when going to social functions. Not knowing that I was making things tremendously worse for myself. I was also rationing my water / fluids to lessen trips to the toilet, and any accidents, which was really detrimental for me--this was when I started developing UTIs as a fairly common occurrence. I feel such anguish and regret that I didn't have information like this at the time.
Tingling, numbness mostly left hand and spasmodic pain. Tingling in spine and occasionally pain in face.
Amitriptyline is not that effective for positive sensory phenomena, i.e. tingling etc. For these symptoms sodium channel blockers (carbamazepine, etc.) and/or gabapentinoids (gabapentin or pregabalin) are better. It does help with central pain syndromes, but duloxetine is as effective with less anticholinergic side effects.
Thank you. It is useful to have this information before my appointment with the specialist, especially as it is only once a year!
Prof, a leymans question about all of these anti-symptom drugs. My nurse gives me pregablin to calm down the neural pathways. It was explained to me that amitriptiline also 'stops the messages getting through' therefore alleviating symptoms. Is this a positive though? when the CNS is trying to navigate itself around lesions and form new pathways, are we not blunting its chances by 'stopping the messages getting through'. I get muscle twitches from head to toe, mostly in my legs but sometimes completely random. Are these just lemming messages walking along my broken neural pathways? makes me wonder if i avoiding the inhibiting medications whether more would survive = less twitching!
The way these treatments work is very complex. Pregabalin is a calcium channel blocker, which will dampen down the misfiring of nerves and explains why it works as an anticonvulsant. Amitriptyline works via many different mechanisms and alters neurotransmitter reuptake mechanisms and changes how neuronal networks function.
Again it is horses for course and symptomatic treatments do work and can improve troubling symptoms and improve quality of life. For example, improved sleep on low dose amitriptyline may outweigh its negative effects on cognition so improve your QoL. You just need to be aware that it is a balancing act.
I wish I could afford the subscription
Simone, I have activated an annual complimentary subscription for you.
That’s so kind of you. I’ve paid you an annual subscription $99 despite not having any income. I don’t drink or smoke, hence with my hubbie (who is my carer) we reckon - YOU are worth investing in.
Fabulous to hear your articles too 💜
That hardly counts as a dirty little secret. Psychiatry is full of really dirty secrets. Historically trephining was common. Electroconvulsive therapy used to be common and has only fallen out of favour in the last 25 years. During medical finals I presented a long case to examiners. I explained the paranoid delusion that the patient believed they had been rendered comatose for months at a time. She reported that Psychiatrists had deliberately given her overdoses of insulin to achieve this. I added incredulously that she even called it, “deep insulin”. The examiners looked extremely uncomfortable. They reluctantly admitted that this was a treatment that the patient had undergone for depression. I had misinterpreted the case completely through naivety and a belief in ‘premium non nocere’.
Having read the list, and description of Tizanidine I can't tell if it too is one to avoid if possible. Would you be able to clarify? Thanks very much as always
It is an antispastic drug that is also quite sedating. It is not necessarily about avoidance; more about being aware of the potential side effects and trying to find the sweet spot. The latter is not always easy when it comes to symptomatic oral anti-spasticity agents.
i take tizanidine at night before bed so i dont wake up 10 times a night with leg cramps
the trouble is when you have terrible nerve pain - but need (and want!) to keep going in life with work/kids/dog/driving/walking a bit - and you've tried all the others. I gave up amit when my children were younger as I needed to be awake in the night for feeds etc. Now I can take it and it helps with the pain. Duloxetine - no thanks - hallucinations and also not fun when you have a drink on it!! (or too much fun lol). on pregablin and baclofen and tysabri as well
This proves to you that it is horses for courses and not all symptomatic treatments work for each and every patient and so does the side effect profile differ.
Been on it probably 8 years. Originally thought that it would cover a multitude of symptoms including TMJ syndrome which I have had since I was a child, facial neuralgia and leg pain. Over time I have noticed difficulty peeing especially first thing, also think it's responsible for night terrors and bowel changes. But can't persuade MS nurse that it needs changing, tried to wean myself off it but can't get below 20mg without the facial neuralgia and leg pain causing issues. Doesn't really help the TMJ syndrome. Now 23 months since I saw Neuro last.
omgoodness! I take it for facial and leg neuralgia. My mom had the same thing.. when i have an attack even the air blowing past my face is excruciating.. It does help keep those attacks down to a minimum. same with the leg attacks. When that flares up i cannot even wear a pair of pants or shorts.. Its horrible. I am sorry you are having side effects tho. I havent had this happen. Thank god because idk what i would do if i had to go back to experiencing these attacks every week. I hope you find relief soon and see your doctor or some doctor soon
That side effect list reads a lot like MS in a pill...
I really like the medication posts, would love to read about the anti spasticity drugs. Little of use out there 😑