I have been on Amitriptyline for 5 years and have gained 10 kilos

Treatment and medication
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I have been on Amitritylins for about 5 years now (50mg) for a number of issues, mostly sleep disorder and anxiety. I have found it wonderful. It is fast acting and apart from the few side-effects experienced by most patients in this forum (dry mouth, constipation, occasional tachycardia), it has alleviated nost of my symptoms. However, one side effect I cannot live with any more is the enormous weight gain, nearly 10 kilos if 5 years. 

This is mainly due to a great increase in appetite. I have the urge to eat every 2 to 3 hours. Now that's depressing in itself. Has anyone experienced that problem? If so, is there a solution -apart from coming off Amitriptyline?

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Hi Rose

Many people seem to put on weight while on Ami. I've put on about 20kg over 23 years and it would be a LOT more than that if it wasn't for the fact that I eat healthily and small amounts. I don't eat or drink high sugar stuff and I'm at the gym or exercise class 3-4 days a week. I also walk for at least an hour a day. One of the main reasons I'm coming off Ami now is the ballooning weight. It will put weight on for a variety of reasons.

I think we are all better off without it so good luck coming off. I'm just stabilising on 17.5mg at the moment and will go down to 15mg in another 3 weeks. Taking it very slowly.

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Thank you Sheena. That's reassuring news because I wasn't sure whether the connection to Amitriptilyne was real or whether my weight was just me being greedy. I am seeing my doc tomorrow to change to another medication. I'll keep you posted. Good luck too with your attempt at coming off Ami. Let me know how you get on. Rose

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hi rose, i have been on ami for 16 months and am in the process of weaning off.  i too have gained  a little weight and struggle to loose it. i get itchy in the sun and feel tired . the withdrawal symptoms are not nice so wean off very slow. good luck.

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Thanks for your input Amanda. I started putting on weight so gradually that at first I did not even notice. It is only after two or three years that I started suspecting a connection with the med. The doc seemed sceptical and said that with age (sic) people put on weight. Well I never used to put on weight or if I did, I lost it quickly without even trying. But I am sure now that it is the medication. Not age. The tablets have indeed increased my appetite. I feel I am in a vicious circle.

And I never mentioned itchiness! That another thing that has plagued me since Ami. Particularly at night and in bed. If it wasn't for the strong sedative effect of the drug I wouldn't sleep at all for scratching. The doc told me to use cotton nightwear!!!!! And said it might be sun damage!!! I don't believe either explanation. I believe it's dryness of the skin caused by Ami. He prescribed Dermo and it seems to help a bit.

Ami is wonderful if it weren't for those very unpleasant side-effects. But on balance, for me at least, the side effects outweigh all the pros. Please let me know what withdrawal symptoms you have experienced.  I'll say more after my doc's appointment tomorrow. Rose  

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Hi Rose, (& Amanda)

I forgot to mention that I did actually come off Ami for a while 7 years ago. Soon after, I remember I lost so much weight that my family thought that I was either sick or really stressed over moving house. I had moved house many times and had never lost weight over it before. Plus stress usually causes me to gain weight😕 When I went back onto Ami a couple of years later the weight slowly came back on again. I have only recently made the link from Ami to weight gain. Then, of course, I googled it and found lots of others in the same boat.

I am really hoping that I lose the weight again once I come off Ami this time. It's taken me ages to come down from 50mg to 17.5mg where Ive been for 3 weeks now. In another 3 weeks I'll cut it down to 15mg if all is going well. I had to buy a new pill cutter yesterday as I've worn the old one out.

When I get down under 10mg I might see if we have Ami in liquid form here in Australia. I know Amanda is using it and reducing her dose by 1mg at a time.

I can't remember much about the withdrawal symptoms last time (in fact I didn't even know that they were withdrawal symptoms back then - I thought that was just the way I was without Ami). I do remember that I slept really badly and had lots of body pain and ended up on a whole mess of other medications that in turn caused their own problems. It was out of the frying pan and into the fire. So, after 2 years in that hell, Ami was looking pretty good in comparison so I finally got rid of all of the other meds and went back to Ami. Now it's time to get rid of Ami too.

So, far the only thing I'm noticing is that I'm finding it harder to get to sleep but easier to wake up. I'm not sleeping as long (which is a good thing as I would need 9-12hrs a night when I eas on higher doses) and seem to be dreaming a bit more. I have rarely had dreams (or remembered them over the last 20 years) So, I'm feeling pretty good on 17.5mg but not looking forward to going down further as I know the sleep quality is going to go down hill soon. It's all for a good cause though so I'm not going to give up.

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Hello Sheena,

I too had tried a shed load of different sleeping pills (all on prescription) but found them rubbish. They simply didn't work and made me feel even worse.

I too tried to come off Ami (cold turkey), last October. As a result, I didn't sleep at all and felt really unwell to start with. But I was told it was "withdrawal". So I persevered but I was getting worse and worse because of sleep deprivation. Eventually I went into complete "meltdown" (I would say it was a "nervous breakdown"wink and by that I mean I couldn't function at all and manage my life on a day to day basis. I was not suicidal but thought I would die. So after 3 months I had to go back on them. I even went to see a psychiatrist (she was useless). Now 3 or 4 months back on Ami I put on a further 2 kilos. I am a "petite" lady. My dress size was 6 or 8 depending on the make. I was under 7 stone in weight (42-43 kilos). I had been that weight since the age of 17 (I am now 68) even after two children. I refuse to buy bigger clothes as it will feel like a surrender. But when I look at myself in the mirror, where I used to see a slim, elegant, trim little lady, I now see a little dumpling. It is not me anymore. Why gain sleep but lose you identity?

I have been researching sleep and depression remedies on internet and I have come across two which are supposed to be very efficient without weight gain. I'll be pushing for one of those when I see my doctor this afternoon. The medicines are TRAZODONE and the other is BUPROPION. I'll let you know. If anyone out there has tried them, please share your opinion with us. Thank you. 

All the best Sheena. You are a brave lady.

Rose

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Hi rose the first time i started to wean off ami i went down from 10mg to 5mg and on day 3 i woke to my whole body in pain and shivering like flu. my head hurt and my eyes felt as though i had pins in them. i felt so nauseous, i could not eat but never vomited. i love a cup of tea but this actually repulsed me. i has awful stomach cramps and kept burping and my stomach was so bloated. i went back on 10mg after speaking with my gp, it took 10day to be back to normal. i tried again a month or so later this time went to 7.5mg i experienced bloating, cramps and burping nothing else this lasted about 2 weeks then i was fine.so after 4 weeks at 7.5mg i went to 5mg again felt poorly , aches, bad cramps. sadly i was back on 10mg and spoke to my gp and got liquid ami. i weaned to 7.5 easily and am now currently on 6.5mg and no withdrawal at all as reduced by 0.5mg every 2 weeks wow. im actually excited thinking i may actually do it this time. x  

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Hi Rose,  

             Yes, it's the no sleep that really makes it very difficult.  I'm hoping that by weaning very slowly this time my body will have the chance to relearn how to do things on it's own without medication.

I was 56kg fully pregnant with my daughter then went back down to 48-52kgs.  I am now 77.5kg despite everything I do to keep the weight off. I'm about 5ft3in/164cm tall.  I live with my 88yo mum at the moment and she eats way more than I do.  My 55yo sister still wears a bikini and looks great in it.  I come from slim genes (and I used to wear slim jeans lol). There really is no reason that I should be this weight.  You must've been very petite.  I know what you mean about refusing to buy bigger clothes.  Buying bigger clothes, to me, is accepting that this is how you are.  This is NOT me.  I will not accept it!

The medications I ended up on last time I came off Ami were Seraquel, Olanzapine, Valium, Norspan matches (an opiate patch) and tramadol.  Coming off that lot was not pretty - especially the tramadol.  I wanted to go and feed some to the specialist who put me on them and so he could see what it did to people.  I really think much of the medical profession has no idea what these drugs really do to people.

I will definitley be looking into something to help me sleep further down the track.  The no sleep is the killer.

How did you go with your appointment the other day?

 

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Hi Amanda

                I'm so glad to hear that you are feeling ok at 6.5mg.  It is exciting. The slow taper is definitely the way to go.  I do hope to catch up to you soon biggrin.  At the time I'm due to go from 17.5 to 15mg I'll be in Greece for a wedding. After the wedding I'm going down to Naxos for 16 days by myself and it might be better to wait until I'm down there to cut to 15.  I'm going to be travelling for 4 months so it will be a challenge cutting down every 6 weeks but I'm not going to put it off.  The sooner the better.

I'm looking forward to hearing how you go on the next cut.

PS - I've searched but there doesn't seem to be a liquid form of Ami here in Australia.  I will have to just get down to 2.5 and see if I can cut the pills even further.  

 

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Hello Sheena and Amanda,

Nice to hear from you again Sheena. 

Unfortunately, with medications, it seems that it is very much trial and error until you hit the Jack Pot. I thought I did this time. 

My doctor (actually a new Doctor to me, as my old, faithful, long-suffering GP retired recently and left me stranded -unforgivable!), so this new lady doctor, very sweet, middle-aged, a bit short and quite plump (I should say very plump!) very patiently listened to me, but I was quite embarrassed to tell her how much I hated being so over-weight, particularly relative to my height etc... However, it seems I am the only one to see and feel the weight, because I still look okish.... So, how do you tell a lady younger and fatter than you that you hate being fat?????

And yes I was a "waif" of a thing, very petite and neatly propotioned!!!! Ah, the good old days!!!

Anyway she very graciously agreed to try me on Trazodone. I haven't taken it yet because she advised me to have a break of about a week between the two drugs. I didn't take Ami last night for the first time and sure enough I was unable to sleep until about 3 am. I woke up at 8am, feeling ok so far on such little sleep. A week without Ami is not too long, as it is the cumulative effect of sleep deprivation that sends me into a spin.

I wouldn't know if I had "withdrawal" as lack of sleep makes me feel rubbish anyway (but nothing like like poor Amanda who suffered very badly with withdrawl symptoms) I don't want to sleep during the day, even a short nap, as this ends up disrupting falling asleep later on. And, in any case, I want to be able to lead a normal life, like everybody else. Luckily, I am now retired. (Did I tell you I am 68?) But I want to keep to a fairly normal routine and not get into bad habits, except getting up a little later when I am on the tablets (usually by 9am latest)...

I shall be a bit apprehensive in the next few days as no Ami and no Trazadone yet, but I shall be apprehensive also about whether Trazadone will work and help with both sleep and weight. 

Sheena have a great holiday. And travelling all the way from Australia!!!! You are very intrepid. Well done!

Amanda, please keep in touch. I did not know you could have Ami in liquid form. All the best to you both

Rose x

PS: I must emphasise that my issue with weight is not vanity. It is the rate at which it piles on that is worrying. In another 5years time, I could be quite obese. And we are so warned against the dangers of that!!! It also affect my general fitness. I am beginning to find it harder to walk briskly and stay out of breath

 

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Hi Amanda, your withdrawal symptoms sound dreadful, particularly as you have not been on Ami that long. It seems that, just as these drugs affect people in different ways, withdrawing them is the same. Oh dear, I can only sympathise. Why were you prescribed them in the first place? You don't say.

I didn't know Ami was available in liquid form, but this is no longer relevant to me... at least for the time being. Honestly, if I can't find a satisfactory cure for my insomnia, I am sure I'll die of it!!! (not being over-dramatic). 

For some reason, it is not a condition taken seriously enough by medics. Instead, they try to probe into your personal life and your past to try and explain it "psychologically". What a waste of time. If I were a diabetic or had rheumatic arthritis or some other physical, chronic ailment, nobody would dismissed it as begnin or "neurotic". 

Chronic Insomnia is a huge reality for sufferers and can lead to severe symptoms. It ought to be taken more seriously.

Best wishes Rose xx

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hi rose, i was prescribed ami for pelvic nerve pain. i cannot imagine not being able to sleep and , lack of sleep has an effect on every aspect of your life. have you read about a cherry liquid which is meant to aid sleep?

x amanda x

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hi Sheena, yes its all good  and exciting what will no withdrawal symptoms. I cannot believe you cannot get ami in liquid form in Australia. Have you a some little electronic scale to ensure acurate doasage?

amanda x

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Hello Amanda,

Yes, I heard that Ami is indeed prescribed for all sorts of other ailments, probably beacuse of its sedative/relaxant effect. But has it help with the original complaint? Are you "cured"? Was it worth it?

Your withdrawal symptoms are (or were) pretty drastic.

I spoke to a friend yesterday and she says that if she sleeps 5 hours a night she considers it a miracle. But she seems to thrive daily on very few hours (like Mrs Thatcher used to!). She has a full time-demanding job. For me sleeping less than 8 hours is a real handicap. I cannot not concentrate and am in a bad and shaky mood all day. All I seem to want all day is to go back to bed. But then bed is a scene of nightmare!!! Anyway, I won't talk about this anymore. It has practically become an obssession over the years. That and putting on weight!... 

Please tell me more about that "Cherry liquid"? It sounds like a natural remedy. I have of course tried Valerian and Camomille and one or two other "natural' fixes. Camomille is better than Valerian (for me at leaset) but the effect is to sooth rather than to make you sleep.... I find anyway.

So please, if you have a tip you can offer for insomnia -you or anyone out there- I'd be grateful. Don't hesitate.

Keep me posted about your own ongoing struggle, although you seem to be winning. All the best. Rose

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Hi rose, aparently if you eat sour cherries before bed  it helps sleep but i know you can by  a concentrated version from herbal shops to aid sleep its worth a go. currently im taking 6mg ami but have started with a headache today taht will not go so think it will be a a withdrawal symptom. x