Sleep meds poll

Oops, I think I didn't think aspects of this poll through very well. Unfortunately, the text of poll options can't be edited. Thankfully, this is a very informal poll and not being used for any higher purpose, just for gaining a general idea of how many of us are on sleep meds! (Though the results probably won't be representative of the general ME population anyway.)

With melatonin (which I also take, bought as a supplement from the USA), I was sort of mentally classifying prescription melatonin as a medication and non-prescription melatonin as a supplement. That's probably not hugely logical lol. Yay brain fog.

For the record, I haven't ticked any box to represent my usage of melatonin - I bought it from a well-known brand of supplements, so it's a supplement in my mind.

I only take 0.6 mg of it nightly, sometimes adding another 0.6 mg if I wake up in the middle of the night.

 

Trimipramine, which is another tricyclic antidepressant like amitriptyline, but gives me longer sleep (8-10 hours versus 7-9 hours). I don't think it is as bad for weight gain either.

I read somewhere, I think by Dr Myhill, that it's the only tricyclic antidepressant that doesn't interfere with the depth of sleep.

 

in 19190 i tried two sleep medications one i remember as zopiclone it gave me hallucinations that i had at that time so seemed very real because of the hypersensitive nerves i had during the first years of M E . i did not go on to try any other sleep meds .

 

Mirtazapine and zopiclone. At least, I think the mirt is supposedly prescribed to aid sleep.

 

I'd forgotten until I read this. I've tried the supplement melatonin that someone who swears by it uses and it made no difference.

Another friend who needs prescription melatonin for her child discovered she can buy it without a prescription in Spain. That worked for me. If memory serves this was 2mg slow release - like Circadin.

So if the supplement melatonin doesn't work for someone, the prescription version still might.

 

Melatonin can help me fall asleep, although it's not all that reliable. However, if I take it after 2AM, it leaves me feeling severely groggy the next day, worse than not sleeping at all. 5-HTP also worked, but I can't recall whether it had the same grogginess effect. Tryptophan might have the same effect, but it makes my ME symptoms much more severe, so I try to minimize it in my diet.

 

My functional and integrative doctor told me years ago that we might need to adjust our dose. Sometimes a tiny amount is all we need. More isn't better, and it shouldn't be taken just before bedtime, it's not a 'sleep aid'.

 

I listened to a 'sleep doctor' on TV last year who said that most doctors prescribe way too much melatonin. His recommendation was that you start at .5 mg and see how it goes and not to take more than 1 mg. I know several people who are being told to take between 5 mg to 10 mg per night which is excessive. My doctor recommended 3 mg which I only lasted on for three or four nights. It made me so depressed the next day that I couldn't function. The depression would hit me out of the blue and totally incapacitate me for 10 to 15 minutes and then I would be fine again. I'd never take it again.

 

Yes this is what I've read too, about dosing, which is why I only take 0.6 mg.

 

Melatonin makes me feel depressed too. I have the same terrible feeling when I take valerian root.

Another thing regarding melatonin is to not turn the lights on in the middle of the night because the melatonin will become ineffective.

 

I don’t take sleep medication in part because I have a ‘psychological’ resistance to taking any medication long term if I can avoid it, but also in the past, given I don’t work and have no time dependant commitments, just letting my body sleep when it wants seems to eventually work out quite well.

Over the past nearly 30 years of my ME my sleep patterns have been very variable ranging from hypersomnia, usually at times when I seem to have a relapse in the underlying ME though erratic disturbed sleeping patterns to insomnia.

Interestingly the hardest thing to deal with has been a recent extreme bout of total sleep reversal, when I was wide awake all night and my body felt all day as though it was in shut down for deep sleep. Eating was one of the hardest issues, because unless I am propped up after meals I tend to get some regurgitation of food, which a few times when asleep has gone into my wind pipe worryingly without triggering a cough reflex. (I was trying not to eat at night, but had no appetite during the day, when I also was more likely to fall asleep.) Had it not been for the current pandemic I would have undergone the ordeal getting to see my GP to discuss sleep medication. Fortunately over a couple of months my sleep has reverted to a more practical schedule.

 

OK, but the trade-off is that the patient misses out on the best sleeping pill. The benzodiazepines for sleep are mostly half-measures. I’ll bet you that the benzo drug manufacturers over-promoted benzodiazepines and over-hyped the dangers of barbiturates to capture market share.

Also Valeant Pharmaceuticals bought the trade name Seconal and raised the price 30x from $1 to $30/pill. So Nice! There are currently no generic manufacturers. https://en.m.wikipedia.org/wiki/Secobarbital

 

I take mine a good hour before I go to bed - no later than 11pm. I can rarely sleep straight after going to bed so read a little fiction.

As far as I'm concerned, if I'm awake in the wee hours and need the loo - which I will, at least obvious once, I need to switch the bathroom light on. If I wake up and can't sleep then getting up and making a cup of decaff tea, so I need lights on, does me much more good than lying getting annoyed that I'm awake. Having said that I absolutely loath what I refer to as mortuary lights - the ones that emit a colder, more blue light. I always go for the warmer tone ones so that might make a difference.

After an initial horrific 6 months or so of really bad insomnia - I got so I dreaded going to bed - I self managed too. it worked well until I had an issue with a neighbour who mounted a TV to the wall dividing their house from my old house. They used to watch it in the middle of the night and this went on for many months until it was resolved. It was a nightmare.

It strikes me as there are a lot of "rules" about sleep and various medication. Reading the thread it appears none of them work for everyone. For example, the dose of melatonin that others describe as too much was how much I needed. So perhaps we as patients should trust ourselves more and be trusted more by our doctors when working out what's best for us.

For many years I was told by other patients that I was doing it wrong because I finally realized if I didn't rest during the day & sleep if I needed to, then I wouldn't sleep much, or possibly at all, the following night. This was absolutely the opposite of instructions given by doctors.

 

Valeant is notorious for that, I think multiple execs went to prison for various crimes.

 

Discussion about day-time dosing of melatonin by Robert Phair here

https://forums.phoenixrising.me/thr...in-dosed-in-the-day.43606/page-2#post-2307414

 

I take 25 mg of amitryptiline, 1 hour before I go to sleep. It is the only med that help me,
otherwise I hardly sleep anymore (1 to 2 hours) and I remain in a crash indefinitely ... scary. Even though with this medicine my sleep remains imperfect, at least I am sleeping.

 

I've seen this claim before about trimipramine not affecting sleep stages, but haven't ever really seen good scientific data on this.

 

i take occasional diphenhydramine & doxylamine succinate (both anti histamines) I find the latter almost miraculous & even the former will make me stay asleep at least 5-6hrs once i drop off. I took one on sat night as i'd been massively stressed hardly slept all wk & had something important to do on sunday, & i slept through from 1am, woke briefly at 9am to turn over in bed & take a slug of water then i unexpectedly dropped off again for another 3 hrs. It was beyond glorious. The effect stays on a little while but only as a sensation of feeling super-calm, kind of 'bomb proof'.

Unfortunately the body does build up tolerance to them apparently so i only take once a month or so. I take them when its a dire need - eg massively overdone it & then so adrenaline filled i cant even keep still never mind sleep

 

I've gone from sleeping up to 18 hours a day to insomia (prob because of medication i've had to take since surgery last year.) On the rare occasion now that i do sleep through the night (like 6-8 hours continuous sleep), i wake up with what feels like sore lungs? And it feels like it used to when i was healthy and slept too much, i'd wake up feeling worse for it. Does anyone else get this? Thanks, K

 

Though subjectively I am not sure I can relate to what you describe as a sensation of ‘sore lungs’ in relation to a ‘good night’s sleep’, I do relate to it as a symptom of PEM and periods of worsening overall of my ME.

However, I do think that often many of us wake from a ‘good night’s sleep’ feeling tired. It is not uncommon for me if I sleep well to require several hours rest if I sleep for eight or so consecutive hours before I can adequately function. Note, though this may occur in association with sleep medication for some, I do not take any sleep related medication myself, so I suspect it is not solely medicine related.