Can't sleep without amitriptyline

[Runaround50]

I'm in a real fix with sleep.
I'm totally dependent on amitriptyline to sleep now.

I've tried to not take it a few days this week and I look and feel like death! No amount of HRT or type, helps. I'm at my wits end. If I didn't take amitriptyline, i wouldn't be able to work.

Really hating life at that moment, it's so unfair. I only take HRT for bladder, otherwise it's useless for me. I've got a mirena in and don't know if that's causing my sleep problems ??

I think we have 'spoken' before on this forum.
Have you had many, long standing issues with HRT?

Have you seen a specialist and tried different types and doses?

Why not get rid of the Mirena and try something else?

Yes I've tried them all. Tablets, spray, gel, patch, all at various doses. Nothing has helped my Insomnia at all.

I'm under Dr Paula Briggs, a very good specialist indeed. She is of the opinion that sometimes HRT just doesn't help with sleep and other drugs are required? M

I am reluctant to have the mirena removed as I had issues with bleeding previously a don't want to return to that again.

This is probably no help, OP, but in case I say something you haven't tried...

no caffeine
no alcohol
several hours of exercise/day (more cardio the better)
losing weight
no screens after 6pm
and other "good sleep hygiene" action?

I hate "restricted sleep" regimes, but obviously they work for some people. Just how many hours of sleep do you get each night, how many hours do you want, and how rough do you feel for the deficit?

Do you just plain not sleep or is something (like pain, overheating or worries) stopping your sleep?

@lljkk my brain just won't shut down. I'm awake for hours, tossing and turning. I have a couple of health issues which are really worrying me. I've developed a Horners syndrome ( rare!!) in my left eye. Had lots of tests, scans etc which show no pathological cause.

Then I have. nerve pain in the left arm. I'm waiting for an mri on my spine for that. My job is busy and at times stressful. I've two teens who could do more around the house.

My oestrogen is low, but can't get it up to a level where I feel well.

Today I plan to tackle my lifestyle and write down all the changes I could make around diet and lifestyle. I've not replaced my patch but instead am going to trial the gel for a few weeks at a low dose.

I've got the ball rolling with a private appointment to deal with my eye again ( NHS not interested).

Exercise I'm lacking, I know. Will try to tackle that somehow.

I don't drink caffeine or alcohol.

Screen time could be reduced hugely.

Is the eye painful? Does the arm hurt more at night?

I really struggle with sleep and take amitripyline. Things that help me:

30 mins walking in the evening
Just got a Neom diffuser and it's amazing with the sleep oil
Bath
No caffeine from lunchtime
Meditation
Also listen to horoscopes on you tube sends me to sleep , sister has just started listening to Harry's audiobook and sends her to sleep very quick

Is there any reason you can’t just stay on amjtryptiline? Obviously it would be better if you could sleep with no chemical help but is it actually causing you any harm?

May be an obvious question but why do you need to stop the amitriptyline?? It’s one of the safest drugs to use long term for nerve pain and insomnia and if it helps I’d just continue taking it surely? I take 10-20mg every day for lupus related pain along with one tramadol at night and if I didn’t do that I’d never sleep. (I am on HRT as well).

I just feel I shouldn't be on a drug long term I guess. It's doing me no harm ( I don't think ) and lifts my mood somewhat. Maybe I should just stay on it?

@lljkk the eye isn't painful but I've developed a bit of a ptosis of the lid.

@Xrays which HRT regime are you on?

Thanks all, I think I'm just going to have to continue with the amitriptyline for now.

Apologies if I'm confusing you with someone else @Runaround50 but are you under the meno clinic run by Panay?

what does patch are you on?

Have you tried other things for your sleep, like meditation, mindfulness apps, yoga?

*dose

@JinglingSpringbells No, I'm under Dr Paula Briggs @ Liverpool Women's hospital.m
Patch dose 75.
4 years post menopause.

I haven't tried meditation etc and am aware that hrt alone isn't going to solve all my issues. Time to give the lifestyle a total overhaul I think.

Tons of people take things long term - if they improve your life it’s worth it. Risks vs benefits I guess as always but amitriptyline is very safe. I have so many autoimmune issues, I take 22 medications a day long term…! It doesn’t bother me at all, I just accept I need them to function.

For HRT I take utrogestan 100mg nightly, every night and oestrogel 2/3 pumps a day and the mini pill - I am on tbe mini pill because I don’t want bleeding / periods due to them being full of huge clots and heavy due to my lupus, so the menopause specialist (nhs and also seen one at Newson health) said I could use the mini pill to control this and it also gives me part of the progesterone for my HRT.

Just stay on it? It’s not a competition between you and the drug. I took it for 20 years for sleep.

@ArseInTheCoOpWindow yep you are right! If it's what I need, so be it. Thankyou !!
@Xrays I'm going to give the gel a go too.. how do you find it with drying etc ? Is it a faff ?

I would just stay on it!

I don’t find it a faff at all. Literally rub it in (one dollop on each limb) and then off I go. Takes seconds to dry. I never understand how people say it takes ages. Maybe I just have dry skin! I put it on after my morning shower.

The feeling like death when you have stopped/missed amitriptyline might be withdrawal, depending on how much you're on. I was on quite a high dose for sleep and stopped it dead which is absolutely not what you're supposed to do. I felt shakey, anxious and nauseous for about 3 or 4 days. If it's still working for your sleep (it stopped working for me after about 18 months) I would stay on it. If it does stop working taper off gradually.

You say you are on HRT for bladder but are you on topical oestro (vagifem, ovestin etc.)? If you're not and your bladder is still acting up you should try that.

Magnesium is supposed to be good for sleep and meno, I take it although can't say it's making a huge difference, but my sleep has been fine for about six months anyway (since I got made redundant from a job I hated).

Also I found Sleepio/sleep restriction absolutely useless, but I had the type of insomnia where you go to sleep fine but wake up at 3am worrying and can't get back to sleep. I think it may work better for the "can't get off to sleep" type of insomnia.

@Nixer yes I haven't taken the amitriptyline for 2 days and feel dreadful. This can't be good though, being drug dependent??

I also have horners syndrome- I got it as a teenager. No idea why. I had a droopy eye lid for a while but that righted itself. Other than the original diagnosis by specialists I never had any further appointments and it has never caused me issues. My optician obviously knows but that's all.

In terms of HRT I would definitely try the gel - my friend switched from patches to gel and found it much better. I also recommend oestrogen cream/pessaries for your bladder.

I had amitryptiline a while back for a nerve pain and whilst yes it helped me sleep, I hated the side effects. However if you don't have any then why not carry on if it makes a big difference to your sleep.

I plan to try magnesium as I also take ages to switch off at night - v frustrating!

I’ve been on and off amitriptyline for decades as I have it for arthritis. It will take more than a couple of nights to change your sleep pattern and go without it.

Why can’t you stay on it, at least for now whilst you are still going through the menopause? When you do what to come off, I’d advise setting aside a fortnight to go cold turkey (wean down beforehand if you are currently on a high dose) and just accept you will have a bad week but the second week will be much better. Then any need for it will be psychological and not physical.

@redtulip12 oh my, you have Horners also?? How long did you have the droopy eye lid for? Do you have any other symptoms? How is your eye now? I SO hope that it rights itself, as I'm sick to death of looking at it. Did you ever find the cause? Yes I will try the gel as I don't think the patches are doing much.

@TheSnowyOwl yes I think i ought to stay on the amitriptyline for now, coming off also isn't doing me mush good either. God it's a headache all of this.

@Runaround50 I have no idea what caused my horners. Possibly a tennis ball hitting me in the neck which damaged the nerve. Wish I could remember how long my eyelid was droopy for but it was so many years ago I'm afraid I can't. That's how it got spotted though. Definitely wasn't too long - months not years. But now you wouldn't know other than looking at my pupils being different sizes. Sorry not much help.

@redtulip12 yes I feel mine has been caused by nerve damage too. I have damage neves in my left arm and now the Horners in my left eye !

I also take amitryptiline for sleep.

Peri-menopause and fibromyalgia meant that I was really struggling with insomnia last year.

I decided that sleep is the most important thing for my health as it really does have the biggest impact on everything else. Once I realised and accepted this and made it my priority, everything else has improved.

I've had to experiment to find the right time to take my amitryptiline so that I'm ready for sleep as soon as I get into bed but not be too tired to get up when my alarm goes off. For me, that's 7pm, into bed between 10 and half past and asleep by 11. Up by 7am.

I also take high dose magnesium and use Alexa to remind me at 7pm each night to take both.

I try to avoid caffeine after 4pm and don't eat after 8pm. (I do 16:8 intermittent fasting) I also avoid processed carbs and sugar and find that helps.

I don't go on my phone once I'm in bed and I'm pretty strict about that. If I do ever struggle to sleep, (happens very rarely now I'm in good routines) I remind myself that lying quietly in bed is almost as good as being asleep and I don't stress about it.

I'm on HRT too and suspect this is helping as I don't have the horrific night sweats then freezing chills I used to!

If the amitryptiline is working for you, is it so bad to stick with it?