Coming off Amitriptyline: I have been... - Fibromyalgia Acti...

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Coming off Amitriptyline

lizzie1 profile image
27 Replies

I have been on amitriptyline for the past 12 years to help with fibro and insomnia. My dose was 10 mgs. I have never felt well. Always groggy but put up with it as I had tried a lot of other drugs but could not tolerate them. I used to take my ami early evening to try to stop the tiredness but to no avail.

The tiredness got unbearable and my GP said I was to come off them . At this point I was taking about 7mgs.

I came off them last week and have felt so unwell. So very tired and a dreadful tight headache which will not shift. I am so surprised that my head is not clearer as the drug must be out of my system? I was so looking forward to getting rid of the grogginess but don't really feel much different.

I am quite possibly being naieve in thinking I could stop after 12 years, but the gp said to do just that.

I am panicking now thinking this drug has altered my brain permanently and I will be left in this foggy headachy world.

I have been taking I drop of cbd oil for the past few days to try to help me sleep. Maybe this is adding to my issues. I don't know what is causing what.

Any help would be appreciated.

27 Replies
Dizzytwo profile image
DizzytwoModerator

Hi there lizzie, you say you had been on medication for 12 years. I am not medically qualified but I would hazard a guess it could take a number of weeks untill your body becomes used to not taking medication. 1 week is definitely a short time to see the changes your expecting IMO

If it was me I would speak to my GP if I was still having problems after 4/6 weeks. You may be going through withdrawal symptoms xx

Momo

lizzie1 profile image
lizzie1 in reply to Dizzytwo

Thank you for your reply. Think you are right, it will take a while to get back to some sort of normal.

I am just shocked at how grotty withdrawal can be. My headache is horrible and nothing touches it. My thinking is muddled too.

Bananas5 profile image
Bananas5

You have gone cold turkey and experiencing withdrawal symptoms.

You must stop slowly, preferably with advice from GP.

CBD oil will do little to help unless a good one made for your specific needs.

x

lizzie1 profile image
lizzie1 in reply to Bananas5

Thanks, my GP said I should stop them straight away. I did explain I had been on them a long time she could see that on my record but that didn't see to matter to her.

Bananas5 profile image
Bananas5 in reply to lizzie1

Unfortunately your GP is one of far too many who say this. They aren't the ones going cold turkey. Stand your ground

x

Sparklingsunshine profile image
Sparklingsunshine in reply to lizzie1

You were on a very low dose but and its a big but, you've been on them for a long time. Your body is used to them. Years ago I took Amytriptyline in higher doses than you for pain and sleep. Never for depession. I found the side effects outweighed the few benefits I got. I decided to slowly titrate off them. It was much harder than I anticipated. I felt so tearful, not like me at all. I felt so depressed. It took while to feel better.

I also recently stopped Nortriptyline, a close cousin of Amytriptyline. I was taking 35mg daily for migraine prevention, not Fibro. It wasnt helping and the side effects had increased so I told my doctor I was stopping it immediately and did. I'd only been on it for about 5 weeks though.

No side effects or withdrawal except good ones. The shaking and daily headaches I was experiencing disappeared within days. I'm surprised she didnt suggest slowly cutting down as its not just dosage but length of time on a drug that can cause withdrawal. Maybe cutting down to 5 mg then 2.5 mg might have been gentler.

lizzie1 profile image
lizzie1 in reply to Sparklingsunshine

Thank you for replying. I had tried Nortriptyline before but didn't get the sleep I needed. I am going to stick with it now I have done nearly a week without ami. I think I have to learn to be kind to myself in this transition period. I do get the odd migraine so will be interesting yo see if they return.

crochetjoy profile image
crochetjoy

Hi there, very relateable to me at the moment as I am in process of coming off amitryptiline myself.I have been on only 10mg for about 7 years to aid sleep. I have decided to try and slowly wean off them as I just want to try without. I am aiming to do this over a 3 to 4 month period. Must stress this is my own opinion and I am keeping a close eye on myself.

I am not an expert certainly, but I do think you are supposed to reduce the dose gradually - it seems a bit wrong to me to just stop them suddenly - especially if you have been on them for 12 years!

You could always ask your local pharmacist their opinion and advice? They are usually a good source of information. Good luck, can you post how you get on if possible?

Thank you.

lizzie1 profile image
lizzie1 in reply to crochetjoy

Thanks for replying. It's quite worrying that a GP would say to stop overnight isn't it? But then they don't live with the consequences.

I do hope it was reduced each prescription and not just stopped because of reducing withdrawal?

lizzie1 profile image
lizzie1 in reply to Iamthemedicalmystery

Hi, it was stopped overnight. I did try to cut the tablet into 2 several weeks ago but didn't do I very good job. I think most nights I got between 7mgs and 10.

RWilliamson profile image
RWilliamson

Sorry to hear withdrawal is hitting you hard, it can take up to 6 weeks to clear from your system. As others mentioned you could ask for a tapered withdrawal but what I really wanted to say was it will gey better! I came off duloxetine and it was he'll for 6 weeks ans then I felt myself again. Be kind to yourself, no harm in trying CBD I take this some nights for sleep too. I also had withdrawal headaches ans they're not pleasant, have you tried cooling migraine straps or 4head? I hope you feel better soon, just try to remember why you ate stopping them to.give you focus x

lizzie1 profile image
lizzie1 in reply to RWilliamson

Thanks for the reply. I will crack on with the cbd as I really need help with sleep and the anxiety it causes me. The ami did help me sleep but left me feeling awful most days. It will be interesting to see if the cbd actually helps the fibro pain. I will take it very slow with building up the cbd dose.

Loobielu profile image
Loobielu

Hi Lizzie1, that sounds awful what you're going through, you poor thing - like any of us need anymore blooming suffering hey! I've only been on 10mg amitriptyline for 7 weeks and it's not suiting me either 😏. I've booked an appointment with GP next week about stopping it. Do you have any plans to try anything else? I'm not sure what to do next x

Sparklingsunshine profile image
Sparklingsunshine in reply to Loobielu

Are you taking Amytriptyline for pain or to help with sleep? Nortriptyline is a similar drug but has fewer side effects and is often better tolerated.

Loobielu profile image
Loobielu in reply to Sparklingsunshine

Hi SS, appreciate the reply ☺️. I'm taking for pain and sleep. Amitriptyline is the first drug I've tried after a recent diagnosis, so its really early (and scary!) days for me. Nortriptyline is a definite option then, thank you x

lizzie1 profile image
lizzie1 in reply to Loobielu

I am going to try cbd for sleep. I have always been worried about taking ami as it has potential long term problems ( dementia risks) but i could tolerate nothing else . I intend to take it very very slow with building up the cbd dose.

Loobielu profile image
Loobielu in reply to lizzie1

Hi Lizzie1, thanks for the reply. CBD/cannabis use does seem to be a popular choice so I wish you well with it 🤞. Like me, you probably find that a bad night's sleep equals a harder day following! Good quality sleep definitely seems key with fibro but not easy to achieve 😏 x

caico profile image
caico

Hi Lizzie1, Three years ago I came off amitriptylene as it was affecting my heart rate and the retina in my eye (plus fed up feeling like a zombie). I was on the same dosage as you for 8-9 years. I didn't tell my GP that I was withdrawing from the drug as they would have persuaded me to carry on (which they did about two years later!!!). I crushed the tablet up and divided the powder into two, then four, then eight, etc. My withdrawal was four months and my body hated this (especially when there was no more tablet). I spent the next six months feeling totally sh#tty and trying to get my sleep pattern back:( I changed my diet (got rid of gluten/dairy/tea/coffee/alcohol/ reduced sugar), took x2 paracetamol nightly and brought a treadmill/exercise cycle for gentle daily usage. I have regularly seen an acupuncturist who prescribes herbal tablets for my awful menopause symptoms (my hormones exacerbate my fibro symptoms). For the last six months I take a piriton (hafever) tablet about 9pm to help with my sleep; which really helps:) Apologies for the long reply but when I read your post I thought I would tell you my amitriptylene withdrawal story. Stay strong and persevere - you will get there. Take care:)

lizzie1 profile image
lizzie1 in reply to caico

Thank you for your reply . Its so difficult dealing with withdrawal, it's something I never considered when I started out on it.My GP said that I was only to take piriton 2/3 times a week, but I understand you have to do what's right for you.

I had a very late onset to menopause, so am still dealing with that at the moment.

The pain and stiffness in my legs worries me. I sometimes feel and look like the tin man. It's all a bit of a melting pot.

Take care.

caico profile image
caico in reply to lizzie1

I worry about taking paracetamol and piriton nightly for long term side effects but now that I sleep better (most nights!) - finding the right balance? I regularly get pain/stiffness in my legs towards late afternoon (that is when the fibro tends to kick in more (and first thing when I wake up - yay). I am sure that a lot of my symptoms are hormone related as my fibro started one day about 16 years ago when my perimenopause savagely kicked in (have had menopause for over 5 years - yay again). I do find that walking and using my indoor exercise cycle really helps with the muscle stiffness. I have tried HRT twice but they came with awful side effects (and more pain) - very sensitive to medication unfortunately.

I sincerely hope you find the right tools/medication (if needs be) to deal with this really crappy condition:) We all need big (but gentle) hugs daily:)

Sparklingsunshine profile image
Sparklingsunshine in reply to lizzie1

I've tried pretty much every sleep inducing remedy known to mankind, sleep has always been a huge issue for me. I would say its my most difficult symptom to overcome. I've tried numerous antidepressants, Pregablin, Gabapentin. I've had actual sleeping tablets prescribed, melatonin.

I've tried herbal remedies, relaxation exercises, breathing techniques, chamomile tea. I was even sent on a sleep course. Most medications didnt work or I more likely gave up due to side effects. My GP prescribes me Promethazine tablets, its a sedating antihistamine, probably better known as Phenergan.

I take 20-30mg at night, along with some 5HTP and it helps a lot. It doesnt get me to sleep as this isnt normally an issue, but it certainly helps with staying asleep or getting back to sleep when waking, which is my bugbear. I take it in the evening and my doctor has never said to limit it.

lizzie1 profile image
lizzie1 in reply to Sparklingsunshine

Hi, I tried phenergen last year and really thought it might help. Unfortunately it gave me restless legs so had to come off it. I have had insomnia for over 30 years and like you have tried just about everything. Am currently trying cbd. Fingers crossed it helps.

mhol95 profile image
mhol95

Hi Lizzie, Sorry to jump on your post but I have just been put on amitriptylene for IBS 10mg also! I am worried about the tiredness as I am quiet a tired person anyway but did you ever drink on them?

lizzie1 profile image
lizzie1 in reply to mhol95

Hi, the tiredness was always an issue for me. I didn't drink very much on it just the odd drink now and then. I can't say I felt drink affected the ami.

Aussielady2 profile image
Aussielady2

I feel for you. I wish Doctors wouldn't tell us to just stop, it's crazy.I have been on 10mg for about 10 years and suspect it's making me tired as well. I am also on 100mg Prestiq which is another type of antidepressant. Need to speak to my pharmacist as I'm sick of feeling exhausted.

lizzie1 profile image
lizzie1 in reply to Aussielady2

Hi, it's only been a week off ami for me but I am not so tired. I was so tired of being tired. I also take another tablet fluoxetine for depression. I tried about 5 or 6 alternatives but this was the only one I could tolerate. I do wonder what so many years of ami has done to my poor brain. I long for the day when I can wake up feeling ' normal'.

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