Thinking about coming off Amitrptyline after just 12 months

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Thinking about coming off Amitrptyline after just 12 months

Postby TNK* » Fri Mar 06, 2015 3:30 pm

Am thinking about coming off Amitriptyline. ... it seemed to work wonders when I first went on it 12 months ago...I was upped to 30mg which seemed like a magic number...I was increased to 40 mg which I didn't like. ..made me like a zombie in the morning and I started having sleep paralysis, which is the scariest thing ever. So I went back down to 30 and things seemed settled. ...but now I'm back to a zombie again and can rarely get out of bed before 1pm as I just keep drifting in and out of sleep. If there is something I need to get up for I can usually manage to get up but am back in bed by 4pm. I'm fed up of feeling like this and I know I can't blame it all on the amitriptyline but I'm certain it has a contributing factor.....I have tried changing the time of day I take it so it's not last thing at night and that seems to help a bit....If I take it at bedtime I have to know there is nothing going on the next day so I can just be left to sleep...I forgot to take the amitriptyline 2 nights ago and I felt fine yesterday morning. ... not perfect and still in pain but not as groggy....and I purposely didn't take it last night....and I was awake by 8am and was able to get up and sort out daughters hair before school...usually she just brushes it and scrapes it back with a hair band. I'm wondering should I drop to 20mg while I wait for a gp appointment as that could take a couple of weeks. Also I am still having the sleep paralysis most mornings when I am waking up and I hate it.
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby Zia2014 » Fri Mar 06, 2015 4:18 pm

I had the same symptoms and the good points (making me drowsy and less pain) where far outweighed by the grogginess - I took it about 5pm when I didn't have to drive until the next day at noon and still felt groggy! - the terrible constipation and the fact that the drowsiness effects wore off in weeks.

Are you on anything else or have you tried anything else before? If you do reduce it do it very slowly as it can be a demon for withdrawal.
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby TNK* » Fri Mar 06, 2015 4:29 pm

Ami is the first thing i have tried, as i was dx last March, it felt like a wonder treatment at first and now i think its more like a demon.

I will come off it slowly and take 20mg this evening, and i will get online now and see when they next apointment for me gp can be
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby Zia2014 » Fri Mar 06, 2015 4:34 pm

It was the first one I tried as well. I think it's quite common to start there, but there are a few others out there. I'd suggest keeping a note somewhere of the positives and negatives with this one, as you are likely to forget how you felt on it (I speak from bitter experience lol).
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby Charmed » Fri Mar 06, 2015 4:42 pm

I was given 20mg to start with which was upped to 50mg within 6mths. Each time I upped the dose, it made me feel very ill/sick, but I have stuck with it over the years because it seems to stop the pain during the night.

I take it at 7pm and although I can get up at 7am the following day, I tend not to due to the grogginess. If I forget to take it for 2/3 evenings I suffer from flare-like pain during the day. So to be honest I'm frightened to reduce it. Please let us know how you get on with it.
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby FluppyPuffy » Fri Mar 06, 2015 4:48 pm

Nortriptyline is an alternative/sister~med of Amitriptyline which is said to be better tolerated and fewer side effects, so it might be worth considering asking your GP about it to see if it might be suitable. Dosulepin is also used to help with sleep issues, and is what I currently have in my night time cocktail. I've been on it for 2~3 years now, and have only recently needed to my first increase in dosage, from 25 to 50mg. I take it an hour or so before going up the wooden ladder to Bedfordshire and it seems to work its magic. I can't recall any unpleasant side effects, either before going to bed or getting up the following morning. Maybe another option to look into???
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby Zia2014 » Fri Mar 06, 2015 5:05 pm

FP - apparently there are some concerns over the effect Dosulepin has on the heart - have you heard about those?
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby sue cooper » Fri Mar 06, 2015 5:21 pm

I developed a really hacking cough on Amytriptyline and was advised by the pain clinic to ask my GP if she would change to Nortriptyline (GP's don't want to because it is more expensive) I was fortunate that my doc immediately change to Nor for me. My cough took a few days to go but I feel much better in a morning, the only affect is still the dry mouth but can put up with that to stay on the Nortriptyline.
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby FluppyPuffy » Fri Mar 06, 2015 5:59 pm

When I started taking it, my GP mentioned it, and as he knows me pretty well, he knew I'd look into it further and go back to him if I had any concerns. I check periodically to see if there have been any further developments altho not as often as I used to. If anything happens so that the cons outweigh the pros then an alternative will be necessary, until then tho, I'll carry on with them.


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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby TNK* » Fri Mar 06, 2015 6:05 pm

I have developed a bit of a cough but its Atypical reflux and im now taking Lansoprazole, and it seems to be doing the trick.

My GP also knew I would go away and research, I trained as a Midwife and my GP is really good with me, when she said she thought I had FM, she did say that she could bet that I had already worked it out, and she was right, as I was going for that appointment to actually discuss the possibility of FM, but she beat me to it.

I just wish I could get her to refer me to a Rhuemy, as I do feel that im missing out on some valid treatment and advice.
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby SianneArtarian » Fri Mar 06, 2015 6:18 pm

I take 200mg of Ami a night, I take it before I go to sleep, I felt like a zombie for the first week I was on them (3 years ago) but now I am absolutely fine, I don't get groggy, they control my pain and I sleep well on them. They have been a godsend for me and I am studying for a degree at university, but I often see people posting that Ami makes them feel like that. There are other meds but I am wary of anything that might cause weight gain, but I think the Dr has to find the right combination of meds for every sufferer as we all seem to be different in what helps and what we can tolerate. However please don't decrease your dose until you see your Doctor as I have also heard sudden withdrawal can be dangerous.
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby Zia2014 » Fri Mar 06, 2015 6:18 pm

TNK - I don't think a rheumy appointment is always that helpful. Going from what I've read on here some people have great appointments with theirs, but I came away with a diagnosis and some basic advice like sleep better and get some exercise. Muchos :roll:

I've personally found the pain clinic programme far more useful.

TNK* wrote:I have developed a bit of a cough but its Atypical reflux and im now taking Lansoprazole, and it seems to be doing the trick.


Ugh, I think that's what I've had for the last 2.5 weeks :(
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby lizashfield » Fri Mar 06, 2015 6:37 pm

I don't think I could cope without Amitrptyline. I have gradually increased to 50 mg per night and I do sleep better for it. I have now been advised to increase the dosage to 75mg but to take it at about 8 p.m. instead of 11p.m. which is when I usually take it.

I know it increases the grogginess but if I don't take it, I feel even worse as I don't sleep at all.

I know it makes my mouth very dry and I wonder if it's those properties that are making people cough?
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Re: Thinking about coming off Amitrptyline after just 12 mon

Postby carolad » Fri Mar 06, 2015 10:55 pm

lizashfield wrote:I don't think I could cope without Amitrptyline. I have gradually increased to 50 mg per night and I do sleep better for it. I have now been advised to increase the dosage to 75mg but to take it at about 8 p.m. instead of 11p.m. which is when I usually take it.

I know it increases the grogginess but if I don't take it, I feel even worse as I don't sleep at all.

I know it makes my mouth very dry and I wonder if it's those properties that are making people cough?


I take 30-40mg but I find I need to take it early in the evening to prevent that 'hungover' feeling the next day. I try to take it at 6pm - even 8pm would be too late for me.
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