Sleep meds poll

Do you (or your loved one who has ME) take any of the following medications to help with sleep?

  • Amitryptiline or nortriptyline

    Votes: 8 12.3%
  • Trazodone

    Votes: 3 4.6%
  • Zopiclone or zolpidem (ambien)

    Votes: 13 20.0%
  • Diphenhydramine (Nytol, Benadryl), hydroxyzine, promethazine (Phenergan), or other antihistamine

    Votes: 9 13.8%
  • Mirtazapine

    Votes: 5 7.7%
  • Prescription melatonin

    Votes: 7 10.8%
  • Other medication not listed here

    Votes: 11 16.9%
  • I would like to take sleep medication but can't get my doctor to prescribe it

    Votes: 4 6.2%
  • I don't take sleep meds and don't wish to

    Votes: 15 23.1%
  • I don't take any sleep meds because I tried them and had bad side effects

    Votes: 5 7.7%
  • Sodium oxybate (Xyrem)

    Votes: 0 0.0%
  • Benzodiazepines (E.g. clonazepam, lorazepam)

    Votes: 4 6.2%
  • Agomelatine

    Votes: 0 0.0%
  • Tiagabine

    Votes: 1 1.5%
  • Belsomra, or other orexin antagonist

    Votes: 0 0.0%

  • Total voters
    65
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.

I had the same problem of depression with melatonin when I first tried it, about 8 - 10 years ago. I bought some 3mg pills but found that gave me a thumping headache so I started cutting them up into smaller chunks. But although the smaller dose reduced the headache problem a bit it didn't solve the depression issue. I could take melatonin once without too much difficulty, but then a second dose taken within a week or two of the first dose would make me feel suicidal. So it became something I used only in emergencies when I absolutely had to be compos mentis the next day. Then I wouldn't/couldn't use it for at least a month after that.

I ended up giving it up altogether for several years because I felt it was actually dangerous for me. But during those years I fixed lots of my low levels of nutrients, changed my diet to include more fat and protein, started taking thyroid hormones for hypothyroidism. And now I can take melatonin without headaches and without getting depressed. I have absolutely no idea what caused the change in my reaction out of all the things I did though. I still only use melatonin rarely, but I can take it a lot more often than I used to. I now manage to take it once or twice a week and have no major after effects.

My husband is not ill in the way that people on this forum are ill. He tried melatonin a few years ago, and he was hit with severe depression completely out of the blue the following day like I was, so he won't take it either. He is someone who almost never gets depressed.
 
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

The sore lungs aside, I nearly always feel absolutely dreadful when I wake up, worse than when I went to sleep to begin with and even if it's just a nap. It's ironic, I need to sleep when I need to sleep to stop symptoms getting worse but sleep itself temporarily makes me feel worse. At times temporary can mean hours. This is one of the reasons why making sure I get sufficient rest isn't a nice, easy & passive thing because sometimes I dread the waking up - not because I'm depressed but because sleep would appear to cause...side effects.

I haven't had any significant surgery but I did go from hypersomnolence to insomnia. As far as know this isn't uncommon in the early stages of ME. There are other conditions that can be masked initially by ME as their symptoms are similar.

Thyroid problems, for example, especially when they develop slowly, might make it seem like ME is getting worse, can cause insomnia and I find can increased achiness about the intercostal muscles - though that may not be what you're describing. It might be worth checking with your doctor to investigate if there's something else that could be treated/ruled out.
 
Back
Top Bottom