# Anyone on or tried amitriptyline/endep?



## Wiggles (Apr 12, 2010)

Hi all - I hope you are all surviving.

I thought I would share something recent in my treatment.  My diagnosis has always been symptoms (including biopsies, bloods and scoping) "consistent" with Crohn's, although never definitive.  Following some reading and suggestions from various sources, I investigated amitriptyline, aka "endep".  

This drug is an antidepressant in high (50mg+) doses.  In lower doses it slows involuntary smooth muscle action by somehow interfering with the signals from the brain to the body.  

My GE agreed to try me on a moderately low dose - 10mg at first, then 20mg.  

At first it did nothing other than make me insanely sleepy.  I usually sleep 5-7 hours, and suddenly I was sleeping 12-14 hours, quick a shock to the system.  It also made me feel sleepy even when awake, although I later realised this was in part because your eyes focus due to the same type of involuntary muscle movement that the drug affects, so when I was getting a bit tired my eyes would defocus!  

Anyway, here's the interesting part - after about 6 weeks, my symptoms seemed to improve.  Not entirely - but day by day, things seemed a lot more "regular" than I was used to.  There were one or two setbacks, but gradually (and despite me trying to keep my hopes down as much as possible) things have improved to a point where I think it's fair to say that the drugs are working well.  I haven't had severe D for about 2-3 months now, which is the longest streak since I've been sick at all.  

Even better, foods which would have been lethal to me 6 months ago are suddenly back on the menu.  Previously any meal high in fat would have been instantly problematic, as would foods high in cellulose (things like onion, celery, tomato skins/seeds etc), and nuts and seeds generally.  Now... I wouldn't say no problem, but MUCH less of an issue.  I ate my first piece of fried chicken in about 2 years a few weeks ago, and my god did it taste good.  

It's like before I was a boat with no keel being blown around wildly depending on the wind - this drug seems to be like a keel - I still go a bit in whatever direction the wind (food, stress etc) is blowing, but much more slowly and predictably.  

The only negatives so far are that I am still extremely sleepy, and a bit of acid reflux which seems to be caused by the drug somehow.  Overall I feel like I have temporarily lost 10-20 IQ points... but at the moment that's a very good trade for the ability to go out or come to work without living in terror of needing a bathroom at short notice.  I should add that I am also on Salofalk oral tablets, 2 in the morning and 2 at night.

Anyway, I wanted to share this because it may help someone here and I wish I'd read about it sooner.  Maybe something to talk to your doctor about.


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## Dustin (Apr 12, 2010)

Hey Wiggles, that is great to hear!  I am glad you have found a drug that is helping you.  Hopefully this will help others as well.

Keep up the good fight!


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## Astra (Apr 12, 2010)

Hi wiggles


Yes I agree, if it works for you, then fab!
Just be careful with amitriptyline, its very addictive, dont just stop it, you will need to taper off it, its a very strong anti depressant. but also calms D and coughs too!
I was on it many years ago for a neck injury, and slept like a log! but I couldn't focus at work, sooooo groggy all day, so had to be weaned off slowly.
good luck
Joan xxx


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## Hedgehog (Apr 12, 2010)

Hi Wiggles,
Great that amitriptyline is working for you. I take 25mgs at night to help me sleep (especially when I'm on the Pred). I was originally prescribed it before my diagnosis when the docs all thought I was a neurotic female who needed to be less obsessed with her bowels! 
Think I'll be less inclined to come off it now if it could be helping...Then again, I want to be on as little medication as possible....
Thanks for sharing - something to think about. 
Gail


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## Minxy (Apr 22, 2010)

Hi Wiggles -- glad you are having such an overall positive experience with amytryptiline.  Brilliant  

Amitryptiline was prescribed for me 3 yrs ago in a very small dose (2.5 mg) 
to help my upper abdominal Crohn's related pain. I could only stick with it for 3 weeks as it caused me to have a personality change and made me feel terrible -- very agitated, hyper and irritable. Also I lost my normal inhibitions and combined with the high levels of irritability it led to me having frequent arguments with friends, family, even sales assistants in stores etc   It was not good. My poor husband was on the verge of leaving home :lol:   
He begged me to stop taking the drug.

Then I had a frightening experience that led immediately to me stopping it. 
I was driving through town and a pedestrian stepped out in front of me. My immediate reaction was to keep driving and if I ran them down, so what, it would serve them right for being in the road!!! Luckily my responsible self took over and I stopped safely. But it was terrifying as it felt like some alien being had come along and taken me over!  Later I learnt that tricyclic antidepressants and SSRIs can affect some people this way.  

I also remember that even on my small dose of 2.5 mg I had the problems you have experienced with focusing my eyes. As I already have so many Crohn's related eye problems I could not cope with more. It is good if you can tolerate that aspect of it. 

As far as I recall the amytryptiline was to help by increasing serotonin levels in the gut.....so I now take 5-HTP, a supplement precursor to tryptophan. I think it is helping..... a little. 

best wishes to you.


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## MAD (Apr 22, 2010)

Hi wiggles

 I was on Amitripyline it was for my sore neck and to help sleep this was before I was diagnosised with CD and UC, I took x2 10mg daily then went to x3 but this gave me heart pelvertation so cut back to x2. My doc has never said it could be used for CD. I ended up taking x2 10mg Amitrip and x2 Zopiclone 7.5mg daily, then Amitrip stopped working as well as use to so stopped it after about 5 years.


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## ameslouise (Apr 22, 2010)

Yes, I was on Imiprimine (cousin to amitriptyline) for three glorious weeks and it was great!  My shrink gave it to me b/c I was having trouble with my pred taper and had a business trip coming up.   It stopped the pain and D in its track the first night.  

It gave me lightheadedness and some bloating and bad edema in my legs.  But it was GREAT while I was on it.  I took it at night and did not have any grogginess or sleepiness.  I was on 10 mg.

I might actually consider going back on it again.....


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