Is anyone taking oral Amitriptyline for their symptoms? If so, what dosage? I have been on 50 mg at bedtime for about 1 year. Dr. prescribed this originally to help with my migraines, but was just diagnosed with EM and see that this drug is sometimes used for this condition.
Hi Nanci, Yes I have been taking Amitriptline 30 mg. for a little over a month. This is along with Neurontin and asprin. It seems to be working as I am seeing improvement each day. This is the third episode I have had with em in the last year and a half but only the first time I have been given Amitriptiline. My dr. says we will try anything if it works. My neuroligist just gave me a cream with amitriptline, lidocaine and ketamine in it to rub my legs and feet but it doesent seem to work although I had high hopes for it. Very expensive but no help at all. It might help some people so try it and see if it works for you.
Hi Nanci,
yes I take a nightly tablet of Amitriptyline, though a lower dose of 10mg. I have been taking it for a couple of years now and I have to say that since being on it I am not woken at night with my feet burning.
You might like to know that it was your question which made me join this group today as I too am interested in hearing about others that take this drug.
Hello Nanci
I have been taking amitriptyline (20mg) since early December last year. It worked really well for some time and I was even able to put the fans and cool packs away. I would get a flare once a day on average during this time but they were very mild and didn't stop me sleeping at night although I still kept my feet out of the covers.
However, the flares have gradually increased since the beginning of February and are really troubling me again - pain, heat, swelling, pins and needles and not able to sleep because of symptoms. Saw my doctor last Friday and he upped the dose to 25mg. It isn't helping much and a couple of nights ago I took 30mg which gave me some rest. I think I will alternate the dose for the time being and see what effect it has.
I don't like the side effects I experience which are - very dry mouth and throat, find it hard to concentrate and my head feels like it is full of cotton wool and I am at times unsteady on my feet. Driving the car is a complete no no.
I am given to understand that 150 mg is the maximum dose of Amitriptyline for EM. It is used as a neuropathic pain remedy.
Just read your profile and wonder what I have to compain about. It is only my feet that are affected. I hope you find the right dose of what will work for you.
Tillyp
Awesome! Thank you, Ken!
Ken said:
Hi Nanci,
yes I take a nightly tablet of Amitriptyline, though a lower dose of 10mg. I have been taking it for a couple of years now and I have to say that since being on it I am not woken at night with my feet burning.
You might like to know that it was your question which made me join this group today as I too am interested in hearing about others that take this drug.
Isn't it hard to accept that a medicine may not be the answer that we first thought it to be? Let me know how the alternating of doses works for you.
tillyp said:
Hello Nanci
I have been taking amitriptyline (20mg) since early December last year. It worked really well for some time and I was even able to put the fans and cool packs away. I would get a flare once a day on average during this time but they were very mild and didn't stop me sleeping at night although I still kept my feet out of the covers.
However, the flares have gradually increased since the beginning of February and are really troubling me again - pain, heat, swelling, pins and needles and not able to sleep because of symptoms. Saw my doctor last Friday and he upped the dose to 25mg. It isn't helping much and a couple of nights ago I took 30mg which gave me some rest. I think I will alternate the dose for the time being and see what effect it has.
I don't like the side effects I experience which are - very dry mouth and throat, find it hard to concentrate and my head feels like it is full of cotton wool and I am at times unsteady on my feet. Driving the car is a complete no no.
I am given to understand that 150 mg is the maximum dose of Amitriptyline for EM. It is used as a neuropathic pain remedy.
Just read your profile and wonder what I have to compain about. It is only my feet that are affected. I hope you find the right dose of what will work for you.
Tillyp
I am taking a low dose aspirin too. Not familiar with the Neurontin, but I will look it up. Thank you for your feedback on the cream. My dermatologist had suggested it's use as well, but I declined since it would not be covered by insurance and I am still trying other meds that are.
said:
Hi Nanci, Yes I have been taking Amitriptline 30 mg. for a little over a month. This is along with Neurontin and asprin. It seems to be working as I am seeing improvement each day. This is the third episode I have had with em in the last year and a half but only the first time I have been given Amitriptiline. My dr. says we will try anything if it works. My neuroligist just gave me a cream with amitriptline, lidocaine and ketamine in it to rub my legs and feet but it doesent seem to work although I had high hopes for it. Very expensive but no help at all. It might help some people so try it and see if it works for you.
My wife uses7.5 mg of Zopiclone(sleepling pill )to help her sleep at night, really works well
I was given nortriptyline (similar drug) before my em diagnosis but it had no effect, this was at the beginning of symptoms when they weren't as bad as it is now. I now take 10x300mg gabapentin and low dose asprin. Glad it works for you.
Thank you, Gary for the info!
Gary A Morris said:
My wife uses7.5 mg of Zopiclone(sleepling pill )to help her sleep at night, really works well
I have not heard of nortriptoline. Thank you, Laura for the reply!
lauraflora1 said:
I was given nortriptyline (similar drug) before my em diagnosis but it had no effect, this was at the beginning of symptoms when they weren't as bad as it is now. I now take 10x300mg gabapentin and low dose asprin. Glad it works for you.
I tried amitriptyline several years, then nortriptyline for a few months, then Neurontin (Gabapentin) a few months. None of those worked for me. The ami did help with sleep, but too much. I was dopey all day to do well at my job, even on 25 mg which I cut in half so was 12.5 mg. It helped a little with Fibromyalgia pain and a tiny bit with EM, but not much. It and nortiptyline made mouth very dry.The nor didn't work well on my EM. Neurontin worked a tiny bit on my Fibromyalgia, but not enough to stay on it. I've never tried Cymbalta and Lyrica, though they seem to help a lot of people with EM, because I don't seem able to metabolize those types of drugs well.
Daily Magnesium supplements (w/calcium), a tylenol arthritis at bedrime and keeping the thermostat low enough (66-68F) is what helps my EM and my sleep most. Also helping sleep is my temperpedic mattress, very dark bedroom, 100% cotton percale sheets (very cool), 100% cotton sleeveless nightgown (cool) that is similar to percale rather than the soft, fuzzy stuff which feels too warm for me. Also 100% cotton blankets in layers rather than a comforter.
Thank you for so much good information!!! I too have been finding that making changes to my bedding has been helpful.
You're welcome. I've even put 100% cotton percale sheets over my sofa, mainly because I found out last year I have a skin allergy to formaldehyde (which is in upholstery fabric finishes) and I react to polyester (maybe due to formaldedhye?). BUT I've also found the sheets feel much better for my EM than the upholstery did just because it's so much cooler feeling. Finding sheets without formaldehyde in them is an additional challenge, but I assume most EM people don't have to worry about that.
I took low dose [10 mg] of Amitriptyline for years and it seemed to work. Big problem is constipation - I don't know how you take 50 mg! I went off of it last year because of dry mouth and constipation and was doing great until something hurt my foot last month. The EM symptoms have come back. I've been reluctant to go back on the med, but will tonight. Do you find it helps you?
Does the low dose aspirin help you?
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