I know a few of you are on amitriptiline, thoughts...

I know a few of you are on amitriptiline, thoughts? (Elavil)

It helped the flares some for a while, but I ATE, and it gave me a very dry mouth.

Ughh. Its hard for us to exercise too

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My symptoms started while on amy. It definitely helped me sleep, i've never slept better than when I was on Amytriptiline but it gave me blurry vision and vision issues like vibrating vision and I had to quit taking it! I know it helps a lot of people and it's a pretty save drugs, it's been around since the 60's. it's advised to start with a very low dose and go up!

Mine started with citalopram. I am iffy about ssri's now. I appreciate you guys helping me make that decision. Was it hard to come off of?

Not at all! It took a few weeks to normalize my sleep! Like I said it's a highly used drug and it's been around for a long time. There's tons of people here on it and getting helped by it, lets wait a bit and see if any of them respond!

Noel. I just realized this is u! Lol

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It worked somewhat for about 3 years and then didn't help at all, may be worth your timebest wishes

You are no worse though?

Angie, yes it has gotten worse. I am now in the process of trying to find a doctor who will look at EM and not my diabetic symptoms which do over lap, finding one so far has not been easy. It is not a trip I want to begin but it's not really hot and when in the low 70's I am in horrific discomfort and pain already, not sure how I will make it through this summer w/out some kind of relief......

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I've been on it for years and still on a low dose. Did wonders for me

Side effects?

I take it at night because it makes me sleepy but that's it

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Made me crazy angry, like couldn't control myself rage.

Oh no, was it easy to come off of for you?

Was easy to come off, just swapped it for protryptyline without any problem. (I'm on it for migraines though, not EM.)

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Very dry mouth! Like couldn't talk dry mouth. Helped for my migraines but then not so much. Lots of weight gain. I finally stopped after 3 years. Good luck!! Everyone is so different. Hope you have positive results.

Did you drop weight after quitting? Ive held onto my cymbalta weight. Its not going anywhere. Prob from lack of exercise.

No like 2 -3 pounds but I've also been sick with some stomach issues. Hoping to start feeling better and I know the exercise is a big part. So hard to move when you're in so much pain. But the weight gain is ridiculous

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I tried it but it didn't help my symptoms. And the dry mouth was aweful!! (I agree with Kerri-hard to talk dry month)also made it hard for me to wake up in the morning. I was on it for neuropathy. I havent had anything help me with my EM.

I would be in the middle of talking and would need to lick my lips just to get my lips off my teeth. So crazy to have such dry mouth. The minute I stopped it went away. I tried the dry mouth wash & everything.

I have neuropathy too. I had very very dry eyes while on citalopram. I wonder if having a dry mouth would also mean dry eyes.. If its easy to come off of im thinking yes, i give it a try.

Obviously ill start as low as possible.

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Yes, 12 Hear

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I'm on the lowest dose for about a year and doing much, much better.


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Weight gain, dry mouth dry eyes. Have stopped wearing contacts and have to be a diligent to have biotene to rinse mouth with

Oh shoot, i can barely wear glasses for long periods of time. Dry eyes suck!

What do you use for your dry eyes?

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No thanks amitriptyline is lysosomotrophic and inhibits autophagy and it also induces mitochondrial dysfunction...kinda like a chemo agent. http://www.impactjournals.com/Genes&Cancer/files/papers/1/114/114.pdf

This is a real crapper. Thanx for sharing!

That means that it kills cels somehow??

Yes, in so many words it kills cells...and an important thing here is that some may already have excess ROS, mito dysfunction, or even in some cases genetic lysosomal storage disease or acquired lysosomal storage issue with their EM. So then, to take a drug that creates ROS, is lysosomotropic and induces mtDNA dysfunction?...doesn't make sense

I take Nortriphyline which I think is similar wondering if this may have the same side effects as the Amytriphyline?

I was just thinking about yours. Ang ang0 any ideas?

Not a doc to Google all the terms within the article to begin to understand

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I was terribly allergic. Also have a friend who had a terrible time getting off it, even though it's not supposed to be addictive. Google and see how to stop if you ever need to, before you get hooked!

Ok o sure will. Im bummed, was soo hoping to find something to help this nerve pain and tickling. It drives me nuts.

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Helps me sleep all night...50mg

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Amazing life safer No side affects accepts slightly sleepy which helps me at night with sleeping.

My 5yr old son has been on it nearly 4 years, amazing

For EM?

Yes EM

Thats awesome!

Your 5 year old has EM? Poor thing he has EM! Did his symptoms developed as a baby?

Yes my son at 1 year old was in a very bad way and was diagnosed with EM, which ? finally put the pieces together for me having EM also and 3 family memberrs. Without life changes, amazing docs and Meds he probably wouldn't be walking today and playing like a normal child. AND we recently just moved to a VERY hot and humid part of Australia (for his lung immunity recovery from other illness) and his coping Amazing!! Started school Prep wearing SHOES!!! No one believes he even made it to school.

That's awesome news! I'm glad he is better now! There must be definitely a genetic component in your EM! Have you been tested for the gene??

Yes been tested. We are 1 of 20 families working with xenon on genetic testing/genes etc to solve the mystery

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Have you all read Ang Kings link?

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My mouth was so dry my teeth ended up breaking. Lost six in total over a few years. It's also a vasodilator which made my em much worse. Didn't work for me but different things for different people. Hope you have more success xx

Have you found anything to help?

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I took it briefly. Too many side affects and this drug mostly helps you sleep through the pain instead of actually helping relieve pain.

It's also more addictive than they say so weening off is important.

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It's been a lifesaver for me. If you try it start at 5 mg a day and taper up very slowly. It might take weeks to get to the right dose that works. Most people start too high a dose and end up quitting it due to side effects. That's why you need to go very slowly

Does it help your nerve pain?

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Helps nerve pain?

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