Want to come off Amitriptyline - Help! - Fibromyalgia Acti...

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Want to come off Amitriptyline - Help!

Lora_S profile image
20 Replies

I have been on amitriptyline for 10+ years now. I am 31. I have always struggled with severe migraines growing up so at 20 they put me on amitriptyline - 2 x tablets a night. Straight away, worked wonders.

I started putting on a lot of weight and very quickly, but the doctors advised that it wasn't because of amitriptyline.

Then started to get acid reflux so they put me on omeprazole which I have now been on for 6 years. Caused me to gain a lot more weight and quickly. I then started having issues with sleeping and excessive snoring and stopping breathing when sleeping and excessive daytime tiredness. Diagnosed with obstructive sleep apnoea and sleep apnoea syndrome 18 months ago.

I am now currently going through fertility treatment and possible hypothyroidism and high prolactin levels.

After being on these tablets for 10+ years, I have now put on 13+ stone and I've been on diets for the last 6 years trying all sorts of diets, food, shakes, exercise etc.

After doing some research I have found that these symptoms are all side affects of amitriptyline. I have requested medication reviews from doctors, but they have said that I need it etc. I want to try and come off it but have read some stories about it.

Has anyone done it? If so, how? Any ideas, tips? Has any one had any similar issues as I've had? Have you come off the tablets and the side affects subsided?

Thanks.

20 Replies
looloo4007 profile image
looloo4007

Hi there Lora ,I came off Amitriptyline no bother I just reduced my dose gradually but everyone is different though

Cat00 profile image
Cat00

Ive come off it twice, but I came down from 125mg so come off 5 to 10 mg a week. If you're only on 2 pills that could trickier, what dose are you on?

Lora_S profile image
Lora_S in reply to Cat00

I checked last night and I'm on 20mg a night. So not to high but been on it for a long time. Worried about the side affects but weighing up the long term side affects im currently having, I don't know if it would be easier. I just don't want to cause any issues by coming off it. Plus the doctors aren't to helpful with it. ☹️

Cat00 profile image
Cat00 in reply to Lora_S

Ive been on it about 20 years. I tend to come off all my drugs about 4 x slower than the GP's recommends as I don't have any issues if I do it this way. If I were you I'd ask for my 20 mg in 5mg doses and come off 5mg week.

I have chronic migraines but Amitrityline doesn't help them it only helps my sleep. I haven't put on any weight with Amitriptyline, Pregablin was another story though! I read Ami can cause cognitive decline though and my memory is very bad but the neurologists thinks my sleep is more important, although I still have appalling sleep.

Lora_S profile image
Lora_S in reply to Cat00

Well I am currently awaiting a call from my doctors - finally. So now you've said about the 5mg tablets I may mention that to them and see what they say. Sounds like a good way of doing it. I take mine for migraines but over the years I've contracted sleep apnoea which is actually a side affect of ami but van always be weight related to. Just feels like the common denominator is the tablets always so hopefully may be able to get off them soon enough. Thank you for your help. 😊 it's always good hearing other people's way of doing it and what they've found. Doctors sometimes aren't always the best place for advice.

Cat00 profile image
Cat00 in reply to Lora_S

Yes I personally never listen to doctors about withdrawal speed, they took me off a high dose of Gabapentin in 2 weeks it's crazy.

You can get liquid Amitrityline too, apparently, I knew someone who struggled so much coming off it she went down to 1mg a day with the liquid. Although I should say Amitriptyline wasn't a drug that I struggled to come off so you may fine it's no problem at all for you, everybody is different.

Lora_S profile image
Lora_S in reply to Cat00

Well I've spoken with the doctor and they said that im to do 2 days on 1 day off for 14 days, then go to every other day taking it then reduce down to 1 tablet every other day and then come off it that and then they can see if it causes any side affects. So going to start that and see how I go. Hopefully it works out as cannot be on this any longer.

Cat00 profile image
Cat00 in reply to Lora_S

That sounds reasonable, I'm sure you'll be fine. It will all level out in the end!

Yassytina profile image
YassytinaFMA UK Volunteer

Morning, I have sleep apnea , have you attended the sleep clinic yet? I wear a full face mask and do get mostly a good nites sleep and I know it’s to stop other medical stuff happening, could you see another doctor? Or even try your practioner nurse at your surgery, worth a try, my lady is very good (they do most things ie prescriptions ) and I don’t feel rushed as they seem to have more time . I put on weight with my duloxtene unfortunately, I do read here this happens with medications, it’s hard to get the right balance , but stick with it and hopefully see someone else xx

Lora_S profile image
Lora_S in reply to Yassytina

Yes, I'm currently with a sleep clinic and wear a full face mask with my cpap machine to sleep every night. It has massively helped me and I do feel alot better for it. But side affects of amitryptiline can be sleep apnoea. It's hard at 31 to be wearing basically oxygen to go to sleep with. I struggle with doing things, like going away with friends over night and feel that the strict routine of the amount of hours you must be on it for a night to be compliant quite restricting. I just don't to be on it for for rest of my life. ☹️

Yassytina profile image
YassytinaFMA UK Volunteer in reply to Lora_S

I do understand, for me I have a small pallet and will be for the rest of my life, I must have gone years struggling without knowing. Do have a word with your local sleep team if need be , I hope your meds can be sorted, I’m wishing you all the best with that xx

Lora_S profile image
Lora_S in reply to Yassytina

Thank you. 😃

caico profile image
caico

I was on amitriptylene for 8-9 years (10mg) and took myself off them about 3 years ago. I put on weight, had a dry mouth and eyes, racing heart and started to feel like a zombie; plus feeling like I had acid reflux. I was due a leg operation in 10 months and surgeon wasn't too happy with my heart beat and blood pressure; so I weaned myself off amitriptylene. I did it in 4 months but still had the cold turkey effects - resetting my sleep pattern was the worst. Took another 6 months and revising my diet (no gluten, no dairy, no coffee or tea (herbal only), no soft drinks, restricted sugar and salt intake. Also took a food allergy test (private) which really helped. When I had my operation the surgeon was amazed at the difference in heart rate/blood pressure. Have lost some weight but a struggle with the menopause - eyes are far better and the acid reflux doesn't happen often now. Take nightly paracetamol for the fibro pain but see an acupuncturist monthly plus, on Chinese herbs for the menopause. Can't take HRT. Personally I'm so proud of myself for not taking amitriptylene anymore as it did more harm than good - but each person reacts differently to medication. Take care:)

Lora_S profile image
Lora_S in reply to caico

Wow!! That sounds like you did amazing to get the outcome you did from it. It does sound like a lot of dietary requirements now though? I hope I don't have these. But I have said previously that I want to do a food allergy test as when I eat certain foods, I get such an unusual feeling. People think I'm weird when I say it but I think it would put my mind at ease. if you don't mind me asking - who did you do the test with? Were they any good? But definitely agree - it does more harm then good!! it shouldn't be so easily prescribed.

caico profile image
caico in reply to Lora_S

Thanks for your reply. Sorry but I cannot find the name of the company that did my food testing- it was about £200 plus and had to ask the surgery nurse to take a blood sample as the blood prick from the finger was useless- kept congealing. Probably best to try and eliminate one food at a time to see what helps - much cheaper. Good luck:)

CripLady profile image
CripLady

Morning. I have put on several stone with Amitriptyline but sleep REALLY well now. I would discuss coming off with your GP.

For your migraines I have been recommended this: vnsdaith.co.uk. I don’t get migraines myself, , but do have Fibro which it is also supposed to help. I plan to go for an appointment next month; may as well give it a go…

Lora_S profile image
Lora_S

Hiya, I have had a conversation with my GP now who has given me a plan to come off it so going to start that shortly and see how it goes. But in regards to the daith piercing, I have known a few people who have said that it works. I had spoken about this to my husband so if the headaches do resume after coming off the tablets then I may have to give this a go. Its definitely worth a go isn't it.

Lizardelle profile image
Lizardelle in reply to Lora_S

I definitely support getting a daith piercing! I used to have terrible migraines and headaches literally every single day and after I got the daith I went about 6 months completely free of headaches! I get them on occasion now but pretty rarely and nowhere near as much as I used to. It hurt getting it, just to warn you, but worth it!Hope you get off amitriptyline alright! I'm hoping to come off it soon too

Lora_S profile image
Lora_S in reply to Lizardelle

Yes I am definitely considering getting it done. I've always suffered with headaches but don't want to be on tablets for the rest of my life. If it doesn't work I can always take it out can't I? Ooh your hoping to come off too - hownling have you been on it for?

Sleepyhead22 profile image
Sleepyhead22

I've come off it, following the Dr's suggestions of weaning off because after a year or two taking them I didn't notice a significant difference. I didnt have any issues coming off. I felt I was putting on weight with it too but at the same time my diet itself wasn't great and after coming off it I made an effort to lose weight so I can't say it did cause weight gain for sure but I think it made me hungrier.

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