The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Frequent Waking Thread

Discussion in 'General Treatment' started by Mattman1, Nov 8, 2012.

  1. Mattman1

    Mattman1

    Messages:
    47
    Likes:
    23
    Hey guys,

    I wanted to start a thread specifically for those whose sleep problems are connected with frequent waking at night (could be several times or more) and what has helped those who are dealing with this problem, especially if it is chronic.

    Also, for those who became Dependent on Benzos or Antipsychotics, what helped you get through the withdrawal periods? I have currently been taking 15mg of Temazepam for about 3 months and now want to taper off it, but am unsure how to do so in the safest and most efficient manner. Anybody with similar concerns, please feel free to comment!
     
  2. maddietod

    maddietod Senior Member

    Messages:
    2,681
    Likes:
    2,407
    East Coast, USA
    Well, this is me! I usually fall asleep OK, but I wake up 4 times on a normal night, and on other nights I stop counting. I've just done a sleep study; results should be in in about 2 weeks. I have no idea when I last slept through the night. 10 years at least. But it crept up from 2 wakings to 3 to4.

    I had my best luck with Benadryl, but it messed up my memory. I'm talking with my doctor about trying a prescription (in the US) antihistamine called Atarax. I've tried pretty much everything natural recommended here, but I've never taken a prescription med for insomnia.

    I have a lot of night kicking, and magnesium fixes that, which in turn helps the sleep issues.

    Madie
     
  3. justy

    justy Senior Member

    Messages:
    5,093
    Likes:
    10,720
    U.K
    Hi, i have been a real night waker too. Until recently i never had a problem with insomnia - can get to sleep, but cant stay there. At its worst i would wake every 30 minutes and this tied in with a time of extremely vivid and alarming dreams. It is much better now, but i still often wake 2-3 times, occasionally i sleep right through, but that is rare. So long as i go staright back to sleep waking twice is ok, anymore feels terrible - like im not every getting into a really deep sleep.

    I havent taken sleep medications due to fear of rebound anxiety, so i took the sleep hygiene type appoach - which did help me a lot, using the suggestions from Dr Myhills website
    http://www.drmyhill.co.uk/wiki/Sleep_is_vital_for_good_health_-_especially_in_CFS

    One thing that helped me enormously was having a snack before bed - Dr Myhill believes a lot of night waking is a form of hypoglycaemia - this also helped my husband who kept waking at night (and doesnt have M.E) I would eat half a banana and a small handful of nuts - started working after a few days.
    I imagine sleep hygiene might be hard to try whilst coming of benzos - i dont know how compatible that would be - the effects of sleep hygiene are gentle and gradual.

    A friend with M.E gave me a tip to get back to sleep quickly when waking from a dream - focus on the dream you hvave just woken from - sounds simple but works for me!
    All the best, Justy
     
  4. Mattman1

    Mattman1

    Messages:
    47
    Likes:
    23
    Thanks for the posts-- I'm glad both of you are not on sleep meds; I mentioned to my doc that I think part of the reason I may wake is because of limb movement, and within moments he wrote me a prescription for Restoril. I asked if I could continue taking it as months went by, and he said it shouldn't be a problem. Nonsense. I know I'm probably going to have several weeks of hell in front of me getting off the things.

    I wish they would mention the sleep therapy, and ditch the meds!
     
  5. Nielk

    Nielk

    Messages:
    6,659
    Likes:
    9,778
    I used to take Klonopin and Ambien for sleep. I became tolerant to the Klonopin and started having a paradox reaction which was making me very ill. I had to withdraw both from the Klonopin and Ambien. The best and safest method of withdrawal as far as I know is the Dr. Ashton method: http://www.ashtonbenzomanual.com/

    I do not take any sleep meds now and I had to "re-learn" how to fall asleep. I too wake up several times at night and each time, I think there is no way I will ever fall back asleep but, surprisingly I do ..most of the time. I try to calm my brain down and to just think of nothing. I even try at times the old technique of "counting sheep". I do not sleep many hours but I don't feel more tired as when I was taking all these drugs. Some nights I just seem to toss and turn the whole night but, i try not to panic about it.

    Good luck with "ditching" the meds.
     
  6. ahimsa

    ahimsa Sick since 1990

    Messages:
    1,795
    Likes:
    3,948
    Oregon, USA
    My guess is that my sleep problems have something to do with my problems with OI (Orthostatic Intolerance - my particular diagnosis is NMH). On the other hand, there are many folks on this forum with either NMH or POTS. Yet I don't remember folks posting similar issues with sleep (e.g., resting makes sleep better). So, who knows, maybe these things only apply to me?

    First, I always wake up during the night. I can't remember the last time I slept the whole night without waking up. It's so normal to me that it's not even annoying. I just roll over and fall back asleep. On a good night I wake up only 3-4 times. On a bad night I wake up 11-12 times and I sleep in short stretches ranging from 20-45 minutes at a time. I know those numbers because one of my bad nights was during the 3 days where I tracked my sleep patterns before an appointment with a sleep specialist.

    On a bit of a tangent, she was not very helpful. She knew nothing about OI (Orthostatic Intolerance) and apparently had no desire to learn. (why do so many doctors lack any curiosity?) When I mentioned my diagnosis she asked, "What's that?" So, I handed her the Johns Hopkins handout. She just glanced at it and then handed it back without reading it. Why ask if you won't read about it?

    I did do a home screening (measured oxygen saturation and apnea/hypnea) but it was inconclusive. I decided not to bother with a full sleep study since I think she would not be helpful. Once I saw that my oxygen was okay then I didn't think apnea was a problem. And if my sleep problems are due to my OI (and both my primary care and my cardiologist have made that guess based on my symptoms) then I don't think that a specialist who knows nothing about OI can help me. There are several symptom lists for OI that include sleep problems. (e.g., http://emedicine.medscape.com/article/902155-overview#aw2aab6b3 - scroll down to list of symptoms for Chronic Orthostatic Intolerance)

    Okay, enough rambling, back to the question. :rolleyes:

    I'm not on any sleep meds because I have no trouble falling sleep. I'm out like a light, just a minute or two after my head hits the pillow. And I can fall back to sleep quickly after I wake up, too. So, it's not like the typical type of insomnia that I've read about where falling asleep is difficult.

    Here's my list of what helps me, for what it's worth.

    First, resting during the day always makes my sleep better. The first time I noticed this was many years ago when I had the flu on top of ME/CFS. I thought it was just the flu making me sleep better. Then I realized that I had spent the whole day lying down, doing nothing other than eating and going to the bathroom, not even taking a shower (which always has at least a small impact). Then I started to experiment and noticed that lying down most of the day improves my sleep. A few days of rest in a row and my sleep gets even better. But doing things which trigger my NMH symptoms (standing, sitting at the computer, cooking, etc.) makes my sleep worse.

    It was a surprise to figure this out. It seemed so counterintuitive at first. Normal folks sleep better after at least a little exertion. I sleep better if I've done nothing. My doctors have theorized that having less autonomic stress, and fewer NMH triggers during the day, makes my sleep better at night. Of course, I can't do nothing forever! My psychological health relies on doing something even if my physical health is improved by doing a lot less. I do my best to find a balance.

    Second, I take a drug called midodrine that helps reduce NMH symptoms. Just after I started the drug I noticed that my sleep improved. Since that drug has completely worn off by the time I go to bed then it can't be having a direct effect. The drug lasts for only 3-4 hours. Patients are advised against sleeping while on the drug since it might cause blood pressure to go too high. So, it must be having some sort of indirect effect. The theory is that being on this drug means fewer NMH triggers for me and that translates into better sleep.

    I hope I'm explaining this well -- someone who knows more about the autonomic issues could probably do it better. :rolleyes:

    I just thought of a third thing that helps me. This is the opposite of advice that is usually given. Many people say to have a snack before bedtime, esp. if you think have have problems with blood sugar. But I do better when I eat dinner either very early or not at all. (some nights I'm too exhausted to eat!) If my last meal was at lunch time, about 1-2 PM, then I generally sleep better. Of course, most nights I'm too hungry to completely skip dinner! But often I make do with a very light snack, or just a *cup of coffee* (Are you laughing yet? Is my body completely opposite to everyone on the planet?) at about 6 PM instead of a full meal. And my sleep is better.

    Once again, this may be related to orthostatic issues. I always have to rest with my feet up after meals due to splanchnic pooling (I think that's the right word for it). And I always have more energy if I have an empty stomach. Maybe digestion is also a factor with sleep?
     
  7. caledonia

    caledonia

    Messages:
    4,201
    Likes:
    3,197
    Cincinnati, OH, USA
    I had a sleep study which showed my feet twitching through out the night. I greatly increased my magnesium intake and that takes care of that.

    I had a rapidly forward moving sleep cycle (as much as an hour a day). I found out I'm sensitive to blue light in the evening (from computer and tv), so I wear blue blocker (orange colored) sunglasses and that has fixed that.

    Another problem, which started about 6 years ago is waking up with my heart beating rapidly and pounding. This is supposed to be a symptom of either sleep apnea or acid reflux. I did a sleep study and don't have apnea. I went through a period where I was on Dexilant and I still had the problem, so it's not reflux.

    I finally found a Yahoo group on a rare diagnosis called catathrenia, which sounds most similar to my problem. However, these people also make a groaning noise when they wake up, and I don't do that. I think I have it narrowed down to - guess what - a vitamin deficiency, specifically B vitamins. On the days that I eat beef, I have very little problem. On the days that I eat chicken or pork, the problem returns.

    I'm gradually working on methylation treatment and this should eventually take care of the problem.

    As far as getting off benzos - I've gotten off Xanax twice and Clonazepam once. You have to taper very slowly, at least over several months. I've heard of people taking years to get off - it probably depends on the amount you were on. I was always on low amounts.

    As you come off the benzo, you'll have rebound anxiety. The one thing I found was that when I dropped a level, I would have some smaller anxiety for about a week, then a bigger problem at the one week mark. If I got through that one week mark, then I would be used to the new lower level. Then I would hold at that level until I was ready to try to lower again.

    Calming supplements like magnesium and theanine/GABA should be a helpful adjunct.
     
  8. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,537
    Sth Australia
    Oh.. i hope you manage to get off the Temazepam okay.. my CFS specialist only allows his patients to be on it 5 days straight and that is only when first starting it .. in which he approves of it being used only for that short time to try to bring sleep cycle forward.. a bit at a time. He said that it can cause issues if used any more then for 5 days running. (after that we only are allowed to have it twice a week.. he always tell patients more then this is far too risky. I took it more then I was supposed to eg 3 times a week and in doing so.. developed a tollerance of the 10mg dose which used to work for me).
    His max dose is 15mg which is what I take irregularly and by doing that.. I havent developed another tollerance. (Its a drug which he only allows patients to try if all the other things have failed)

    I stayed off of it for 4mths thinking if I did I may be able to have a 10mg dose work again for me.. but it didnt (so it appears once a tollerance to it develops.. it can take a very long time to be as sensitive to it again). Great drug but lots of caution needs to be done and you are wise asking others for best way to cut down. (in my case cause of my irregular use of it, I dont have any trouble stopping it)

    anyway.. best luck with getting off of it.

    As far waking up during the night go.. for some that can be due to low glucose in some.. If that is the case having some complex carbs (eg whole grain cracker biscuits with cheese) may help. Also sleep apnea should be ruled out. Restless leg syndrome can also disturb sleep.
     

See more popular forum discussions.

Share This Page