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Functional Neurological Disorder - FND Hope

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Sleeping tablets

DNE92 profile image
DNE92ModeratorFND Hope UK
18 Replies

Hi

Has anyone found a sleeping tablet that works? I'm on Zolpidem Tartrate 10mg and at best gives me 2 hours sleep. GP won't increase the dose so I'm wondering if I should switch to something else that might actually give me something approaching a night's sleep.

Thanks

Lou

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DNE92
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Bailey09 profile image
Bailey09

Morning Louyse

Sorry I haven't a clue my doctor refuses point blank to give me sleeping tablets I wish he would I could do with a decent sleep

Take care x

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to Bailey09

Hi. that's horrible. I sometimes wish doctors could try having night after night of rubbish sleep to see how it feels and it's impact - they'd be self-prescribing within a week.

cheers

Lou

Warrior50 profile image
Warrior50

Morning Lou, I too struggle with sleep, or should I say a lack of it!! 💤 😴 Over the last couple of years I’ve tried a few different sleeping tablets, I’d say that one that helped, which didn’t make me feel “zombiefied” all day is Zopiclone, ask your GP If u can try it, I’d suggest a low dose to begin with as they can have a “A bit of a kick” to begin with. Hope you get on okay and finally get some sleep 💤 xx

jhop profile image
jhop in reply to Warrior50

Mertazapine at low dose works well

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to Warrior50

Thanks for the advice.

Cheers

Lou

eviedotty profile image
eviedotty

not sure where you live but if you can I have been using herbal stuff and also in relation to spasms there is a pill called diphydramine and this is also used as a sleeping tablet so for me it's a win win in that it calms the spasms to let me sleep and it allows for a decent 7 hours and no hangover effect...

I should also add that herbal stuff like nytol doesnt work like the drugs you get from the doctor and so perseverance is needed...what I found was that during the day I had signs of being calmer and it was things like I was slower to get irritated and I actually talked a bit slower as well and when my day time started to feel like this I found that sleep was a much more natural arrival. I can also recommend a good night time routine and for me I have no screens in my bedroom...am at an age where that never was a thing so as such not really something that I ever did. I do however like to read as it takes my brain away from the day time goings on and into the book I am reading. Now with my condition my muscles will no longer allow me to hold a book to be able to read so I now do audible books that are free from the library. It can be set to go off in an hour or the end of the chapter etc and so you dont need to worry about it waking you up. Once you have set it to go the screen goes black and so you have no screen light to deal with...

my very first book was war horse and it was such a page turner that I have to confess that I am more likely to go to bed an hour earlier to hear a bit more of the book than stay up later. You could also try having the bedroom window open just a touch and my final thing is a weighted blanket that has been life changing...hope something here helps

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to eviedotty

Thanks. I thought it was just me who "woke up" feeling like I missed the wildest party the night before but got left with the hangover.

Cheers

Lou

Junebeatle profile image
Junebeatle

I use Valium 7.5mg for over a year since I was shaking all night & a weighted blanket. My medication does add to my fatigue, but I’m able to work part-time and live a normal life as much as possible with this. I jump on a rebounder when I wake up that helps. I also found recently Cryotherapy to help...had saw some good reviews on MS pts muscle spasms & tried it out for 3 min a few times. Feel much better afterwards, if it weren’t so expensive I’d get a monthly membership.

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to Junebeatle

Thanks. I did try a weighted blanket but because I move all night (simply put down to Periodic Limb Movement Disorder by Neurologist without even seeing me) I stopped as it fell like i had been running all night. And this continual movement was discovered when I was being treated for sleep apnea (which I have and there is a family history of it). I do wish Neurologists would take a full history of you and your family before just deciding it's FND.

Junebeatle profile image
Junebeatle in reply to DNE92

I have both of those also, they were discovered before I ever had FND in a sleep study. I always wondered if they had been treated it might have made a difference in the later development of things.

Low ferritin levels are linked with periodic limb movement disorder (as its an issue with dopamine transmission) which I’ve had for 13 years...no matter what iron I take it stays low. I just had a uterine ablation to end extremely heavy cycles so perhaps that may increase. I know low ferritin has its own neurological symptoms (as a woman we should be at least 100) Something to maybe look into yourself?

Hisue profile image
Hisue

Temazepam. I take it and I am “out like a light.” Can be habit forming; but I was getting sick from lack of sleep.

DNE92 profile image
DNE92ModeratorFND Hope UK

Thanks. Ditto on the lack of sleep - my bed I view with something approach "fear" now as I know it offers no rest. Sometimes I try moving to different rooms.

M3rry profile image
M3rry

I managed to get to see a sleep specialist - diagnosed with two sleep disorders (after talking to other specialists I was told to accept I won't sleep properly - ever).

Initially I got given clonazepam and melatonin. 10 years later after NO help from GPs I got myself off the clonazepam (very difficult). Now only using melatonin.

If you can find a sleep specialist who will do a sleep study go for it - you are more likely to get future medics to give you some respect about lack of sleep. They will also be able to give you a better starting point for sleeping pills.

The current advice for all benzodiazapines (like my clonazepam) is minimal time - be worried if any doctor wants you to be on them for longer than a week. They do have serious side effects and after 10 years they had built up to the point my boss started asking questions about them. And they probably had no effect on my sleep by then.

The melatonin is far safer but isn't 'sleeping pills' they are the hormone your brain should be making to get you to go to sleep - they give you the soft push into sleep. But timing them right is hard and they're not prescribed commonly.

Good luck!

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to M3rry

Thanks. Lots of advice. I definitely need to speak to someone (other than a doctor) about my sleep and diet. I unfortunately have sleep apena although mild - so the specialist said I didn't need oxygen at night. However, my GP thinks I should still give it a go (no doubt will need to buy it myself) but I wake up feeling hungover and I don't drink and feeling hungover was the first thing my GP asked me about.

Junebeatle profile image
Junebeatle in reply to DNE92

I use a special apnea mouthguard that works because I failed using CPAP after lots of trying. (I would wake with the mask taken off or would take hours to fall asleep from “feeling it” & insomnia wasn’t an issue before using) I had a post mouthguard sleep study that showed the appliance works.

I couldn’t tolerate melatonin, it makes me highly irritable the next day (this was before Valium) If you can avoid a benzodiazepine that’s good, but some with this condition don’t have a choice. Good luck 👍, find what works for you, but know finding a way for proper sleep whatever that entails is important for FND.

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to Junebeatle

Thanks for this.

I have been having really good sleep since using CBD oil on my lips for a precancerous condition. I bought a lot of samples and this one is called blue edition. I am prescribed Zopiclone for occasional use and also Diazepam for occasional use for muscle spasms. Both work well for sleep but the price is very high next day for me. Anyway since using CBD oil I haven’t needed them!

DNE92 profile image
DNE92ModeratorFND Hope UK in reply to

Thanks. That's very interesting.

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