1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

I sleep less than 10 hours/week

Discussion in 'Sleep' started by Aerose91, Apr 10, 2014.

  1. Aerose91

    Aerose91 Senior Member

    Messages:
    598
    Likes:
    268
    I have not slept for 3 straight days now yet I'm lying here completely awake Not jittery or wired or anything. Just, awake. Its kind of scary actually, to be so sleep deprived and not feel the least bit tired.

    I have told my doctor about this and that I have had major damage from benzos so I can't take them. What does he do? Tells me to take a benzo.

    One thing I noticed is that the less I sleep the harder it is to sleep yet nothing will put me to sleep. I'm starting to think I need a major tranquilizer like Seroquel or something but to be honest, with as sensitive as I am to all medications and damaged my brain already is, I'm very scared to try it.

    For those who have improved, does sleep improve with the rest of the disease? Or is it it's own entity...
  2. justy

    justy Senior Member

    Messages:
    2,551
    Likes:
    2,516
    U.K
    Hi, I have noticed that I can easily set up a pattern of not sleeping and then the less I sleep the more awake, unable to sleep I become. Luckily for me this has not happened for some time, and my sleep is generally pretty good. I have found that the longer I have been ill for the more my sleep has settled.

    I also never wanted to take sleep aids, although I very OCCASIONALLY take a very low dose benzo to travel or if I have a big thing to go out and do, but only a handful of times a year. At the moment I am having pain issues, not related to M.E and am taking a small dose of codeine at night so that I can be comfortable enough to get to sleep and it knocks me out (I take half a childs dose!)

    I know it sounds like not great advice, but I actually found sleep hygiene measures, as discussed by Myhill here:
    http://www.drmyhill.co.uk/wiki/Sleep_is_vital_for_good_health_-_especially_in_CFS

    pretty helpful - but it did take time. As well as trying to address hypoglycaemia issues which can interfere with sleep. I must admit she suggests 9-9 30pm for bed, which is a little early for me, but I do do best if im in bed by 10, with lights out by 10.30. If I stay up until 12 then forget it, I will be awake for hours. Dr Myhill talks about this and me and my husband call it missing the 'sleep bus'. as she says it comes in 90 minute waves and if you miss one it wwill be another ninety minues before you get another one- and for us this can cause issues with then getting on the bus and going to sleep.

    All a bit simplistic I know, but these techniques have helped me a lot over the years. My main issue was staying asleep - could wake every half hour at night - eating a snack before bed, but also following advice from a friend to concentrate on the dream I had just come out of and not open my eyes both worked to more or less to cure this.

    I hope you find something soon - sleep is so important for healing, but so elusive for many.

    Justy.
    merylg likes this.
  3. Martial

    Martial Senior Member

    Messages:
    834
    Likes:
    552
    Ventura, CA
    That is really rough man, sorry to hear about all of that.. I really wish there was something I could do to help! I have the exact opposite problem, I over sleep too much and have a hard time just staying awake half the time, it just feels like my body needs it.. I could literally sleep for days, sometimes I will feel wide awake in the day and then get hit with a feeling of being tranquilized and can barely move, etc... then gradually later it lifts and generally its just very up and down..

    I know I have issues with infection in my brain but its so weird that the symptoms are never constant, I am actually kind of shocked to hear you feel so well, no real tiredness or anything, maybe its similar to the changes that happen with people that are sleep deprived for very long times.. I remember reading a book called Mans Search for Meaning by Victor Frankl. He is a Doctor who created something called Logotherapy and the book discusses his experiences in the holocaust where he came up with his therapy method of Logotherapy. It is obviously a very extreme example but he mentions that they basically never slept for the entire two and a half years they were in those camps.

    Anyways perhaps something to help make you sleep better would be useful but if you already had horrible reactions to the benzos then maybe its best to explore other options as much as possible first, in the very least start at very minimum doses of whatever you take. I know you already mentioned trying all kinds of different things to use, I hope you can work something out soon though man!

    Really want to hear about your recovery and way back into good health again too!

    Don't have much to offer to be honest man, just want to say your in my thoughts,

    Todd
    merylg likes this.
  4. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,938
    Likes:
    4,911
    Sth Australia
    I feel very sorry for you. I used to be like that. My body lost its ability to be able to go to sleep. I was going up to 5 days at a time at one stage with NO SLEEP at all (I couldnt even nap). I'd end getting hallucinations (like going into a dream like state and seeing dream like images) when awake doing stuff but still couldnt sleep!

    I ended up having to take drug combos of things and alternativing drugs (I was also on a benzo but my specialist only allowed it 2-3 times per week max due to its tollerance issues).

    Seroquel for me was an extremely bad drug and if I took that.. I couldnt function AT ALL the next day. It completely incapicitated me. It affected my head greatly too and make it far far more harder to think! It also had the after affect of making me feel dreadfully hungover and like feeling seedy too. (edit.. I just remembered, for me the Seroquel didnt even work well either.. I was confusing it with something else).

    Have you tried antihistamine like doxylamine succcinate? If you havent, I suggest you to try it as it works as well as strong sedatives. I used to take a combo of that and melatonin 3mg (thou dont take this antihistamine all the time as you can quickly build up tollerance to it and it then stops working. I find I can build up tollerance to this if I take it daily within about 3 weeks.. so I ended up taking it every second or third day and didnt develop any further tollerance to it from there).

    Another thing to consider which did affect my sleep but it took me ages to figure this out.. was EMF fields (if I tried to go to bed with electric blanket, no way could I sleep. My room also needed to be completely dark. But without the drugs I could lay there ALL NIGHT and not get one bit of sleep and was still laying there awake come light.

    Fortunately that is a symptom which I no longer have now but yeah, it was a real nightmare situation for me .. I just felt more and more hyped up and awake (I felt like going out running thou I knew I couldnt), the less I slept and it just got harder and harder to sleep till it become impossible.

    You get to the point where you can be talking away to someone and not even aware of what you are saying due to lack of sleep. Watch out for the halluncinations (for me it was like seeing big blobs over the place which would kept startle me.. I go to walk and think there was something in front me, so stop dead in my tracks only then to realise it wasnt there. if I'd been driving I would of smashed a car. Halluncinations started happening to me on day 5 of no sleep at all. You end up feeling like you are going to go crazy due to no sleep.
    Last edited: Apr 10, 2014
    merylg likes this.
  5. vamah

    vamah Senior Member

    Messages:
    577
    Likes:
    644
    Washington , DC area
    I completely understand. I haven't slept without some sort of meds in 2 years. I hate that, but I also know that my health will only get worse without sleep. I have been through ambien, trazodone, seroquel and am now on remeron. They all seem to work for a while, then I guess I build up a tolerance. I don't know what the right answer s for you in terms of drugs, but I hope you figure it out soon.
  6. wastwater

    wastwater Senior Member

    Messages:
    164
    Likes:
    52
    uk
    Im an oversleeper,thank god.Are you taking anything that could account for not getting sleep.
  7. caledonia

    caledonia

    Messages:
    2,875
    Likes:
    1,463
    Cincinnati, OH, USA
    As the disease improves, sleep should also improve. But it can also be a chicken or egg thing. If you can get sleep to improve, you will feel better.

    1) Have you had a sleep study and if so, what were the results? (I know it's hard to have a study if you're not sleeping at all).

    2) You might actually be sleeping some and not realizing it. This happens to me.

    3) Sleep is mostly about neurotransmitters, which we're often low in. If you're having problems with benzos, I would probably avoid meds altogether. You can take various supplements - you may need a cocktail to hit several angles, instead of one supplement. Possibilities are 5htp or tryptophan for serotonin (taken in the morning), and melatonin for melatonin (taken before bed). GABA, theanine or Kavinace all work on GABA which is calming. GABA or theanine can be taken at breakfast, lunch, and supper, and Kavinace at bedtime. A lot of times we have low GABA and high glutamate, which is stimulating, causing the tired but wired effect.

    Most processed foods contain MSG (glutamate) and there are four foods which are naturally high in glutamates (peas, mushrooms, tomatoes and Parmesan cheese). Avoiding these foods can be helpful.

    4) Then you have restless legs and muscle cramps which can be caused by being low in electrolytes. You would take magnesium and/or potassium for that. A lot of times we have weak adrenals which causes the electrolytes to leak out. So you need to replace them until you can get your adrenals repaired.

    5) Then there is sleep hygiene. Tania mentioned EMFs. I ran into a problem with the light from the computer at night causing an extreme circadian rhythm problem. So try staying away from blue light in the evening (computers, tvs, daylight bulbs, etc.). You can wear amber colored sunglasses if necessary. The blue light is what naturally occurs in the morning and stimulates production of serotonin, which wakes you up.

    I've had all of these things improve with methylation treatment, and I've been able to discontinue all of my sleep supplements.
    helen1, WoolPippi and merylg like this.
  8. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    I was prescribed low dose amitriptyline for helping me get to and then stay asleep when I went through this waking nightmare period.

    It put me on another planet, exacerbated my POTS and I had to stop because of the side-effects,

    but it did work for the sleep issue, while I was taking it.

    Just getting the sleep that I did while taking it was a huge help.

    It wasn't so bad afterwards. :thumbsup:
  9. Aerose91

    Aerose91 Senior Member

    Messages:
    598
    Likes:
    268
    Thanks for the suggestions, everyone. The toughest thing.for me with this disease is Its incinsistency- I'll be one way for a couple months then things will just change 100% for another few months and so on. It really feels like nothing I do has any effect at all and I'm just swinging wildly.

    I have tried every single mixture of everything possible really. All anti histamines, doxepin, Valerian, Theanine, tryptophan, passion flower, Prazosin, etc..
    The only thing that helps slightly is anti histamines but they loose their effect after 3 days so then I'm screwed again.
    Oh and I also do all of the sleep hygiene things, including blue light therapy, but like I said this disease morphs so much all the time it doesn't seem to matter what I do.

    Hopefully my doctor can figure something out other than a benzo and I could get some regular sleep- that would be a feat. I simply can't deal with declining any further because of my sleep issues
    merylg likes this.
  10. Aerose91

    Aerose91 Senior Member

    Messages:
    598
    Likes:
    268
    @Martial

    Thanks fir the words, man. Sometimes I feel like I'm about to turn into the girl from the exorcist and my head is going to spin 360 degrees around on my neck, lol.
    As someone.with confirmed Lyme though and an active infection- do your symptoms change all the time? I mean, I have my baseline symptoms (mental) that are always there but so many things change constantly like my sleep patterns, muscle weakness, fatigue levels, hypoglycemia, etc..
  11. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    If your sleep is as bad as this, your symptoms will all be getting mixed up with the awful effects of sleep deprivation - on top of being ill.

    If you haven't yet been given a prescription for low dose amitriptyline (10 mgs, the dose used to prevent bedwetting in 7-year olds), it might be worth trying. It did work, and I did stay asleep for a few hours.

    Just to get you some sleep.o_O

    It was worth being a bit spaced out during the day, it was even worth the fainting (it made my POTS worse),
    just to get some decent sleep.

    (I actually didn't mind feeling spaced out if I was cheerful, but if I was miserable, it was horrible.)

    But if it helps any, I think there are an awful lot of us who have been through this stage of the damned disease - and we have come out the other end.:thumbsup:
  12. Aerose91

    Aerose91 Senior Member

    Messages:
    598
    Likes:
    268
    Thanks peggy-sue. Yes it's very, very bad and very inconsistent. I will bring this up with my doctor and hopefully he will respond. To be honest, with as bad as my brain is I don't even know if I would notice a medication hangover! I'm so badly sleep deprived and I don't even notice that
  13. peggy-sue

    peggy-sue

    Messages:
    2,494
    Likes:
    2,872
    Scotland
    It is one of the few things recommended by NICE - if you're in the uk, you should not have any trouble getting a script for it.

    The deprivation you are suffering right now, needs seen to as a major priority.

    It's not just all of the nightmare of not sleeping - you've got the added nightmare of having to be awake for so long - feeling vile, unable to fill the time, bored witless, with no relief from it.:(
  14. geraldt52

    geraldt52

    Messages:
    64
    Likes:
    213
    You sound as though you are experiencing classic benzo withdrawal, which can last for years after abruptly stopping them. Going back on them, then titrating off them, may be easier than trying to fight through the withdrawal cold-turkey. For lack of knowledge, I did the latter, and went through a literal hell for several years. 12 years later I still haven't completely recovered. Benzos are incredibly dangerous drugs to be prescribed like candy, as they are. You may need professional help. The usual "remedies" are like fighting a 3 alarm fire with a squirt gun. You may get some help understanding what's going on here:
    http://www.benzo.org.uk/

    I hope that helps...I feel for you.
    Last edited by a moderator: Apr 10, 2014
  15. Aerose91

    Aerose91 Senior Member

    Messages:
    598
    Likes:
    268

    I am in benzo withdrawal- 2 years now. I know all too well the hell that comes with those pills. However something changed when I got ME and my sleep got even worse believe it or not. I am a member of benzobuddies and have read all the literature so I know that if you reinstate it has to be within a couple months otherwise you're doing more damage to yourself. Regardless though, I bet if I were to ever take a benzo (which I wouldnt) I would probably have massive panic attacks from the fear of going through what that pill has done to me again.

    I'm very sorry to hear you have been through the same thing. Doctors have NO CLUE the damage those pills can cause
    peggy-sue likes this.
  16. geraldt52

    geraldt52

    Messages:
    64
    Likes:
    213
    If you are two years in, I'm sad to say there isn't anything you can do but wait it out...I surely wouldn't restart the benzos that far into it.

    I have tried everything anyone has ever written, and there are two things that helped me through the worst of it.

    First was valerian root, which is a sort of natural anti-anxiety aid...it isn't a magic bullet, but it can help take the edge off the desperation you feel when you can't get to sleep after days of being awake.

    Second, and you won't find any profession source that will endorse this, was alcohol. I would generally take a valerian root capsule at bedtime and then spend a couple of hours trying to get myself settled where I might go to sleep. If in several hours I didn't, which was usually, I would get up and take a shot of vodka, with a tiny bit of apple juice to kill the taste, and immediately go back to bed. You're looking for enough alcohol that that wave of relaxation comes over you, not enough to make the room spin. I might only get an hour or two of sleep that way, but even that was a huge improvement. I have even done the shot twice in one night.

    Try it or not, but I can tell you that it got me through the very worst of times and I still use it with some regularity today. I never developed any dependency or experienced any need to increase the "dose" of alcohol, which are the hallmarks of the benzos. Maybe it will help you too.
  17. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,219
    Likes:
    4,521
    australia (brisbane)
    I have mentioned this before but ithink our best bet is to alternate a few things before getting a tolerance or a need to increase dosages etc

    I think using benzos can be done safely by alternating with med's that aren't benzos and regular med holidays. Also restrict ones doses. I think a lot of issues occurr when one benzo/med is used all the time and doses are continually increased to keep them working.

    If one has used benzos or not many mecfsers still seem to have sleep issues. The main inhibitory neurotransmitter is gaba so we need to somehow sort it out not avoid it, somehow.
  18. alwayshopeful

    alwayshopeful

    Messages:
    74
    Likes:
    32
    So sorry you are going through this!! To me, there is nothing worse than lack of sleep.

    I tried everything, natural and pharmaceutical and nothing seemed to work. I finally hit on a combo that works wonderfully for me, amitriptyline and lunesta. Started with 25mg amitriptyline and 2mg lunesta. I didn't want to be taking prescription sleep aides, but could no longer function without sleep.

    This combo gave me 7-8 hours of sleep every night. Heaven!! After two months I started to slowly reduce the dosage. I now take 12mg amitriptyline and only take lunesta about 2 nights a week at 1/2mg. Hoping to eventually stop taking both.
  19. Martial

    Martial Senior Member

    Messages:
    834
    Likes:
    552
    Ventura, CA

    Haha no prob! that is quite a scary reference too :O

    Yes all the time! Sometimes even hourly, it is very random but there is usually always some kind of underlying base symptoms underneath the others as well..

    It can make working and planning very frustrating because I always never know how I will be able to do certain things, energy level, cognitive, etc...

    Sometimes I will feel too weak to walk up a staircase and have really bad pains, then I could be able to walk miles on the same day.. Usually feels like herxes from the meds, idk.. Very strange though.. Lyme is much stranger then normal descriptions usually entail.

    I think at least in my case it has something to do with nerve irritation, and inflammation in the brain. Becuase things can shift way too dramatically for another underlying issue, A chronic encephalopathic state is pretty norm with chronic Lyme and it canhave all kinds of weird and sometimes bizarre symptoms.
  20. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,938
    Likes:
    4,911
    Sth Australia
    Amitriptyline seems to be a commonly recommended for sleep drug which many ME/CFS specialists recommend. One patient survey thou showed that it caused far more for us issues then it helped thou. (If I find the survey again I'll put it up).
    .....................................

    warning.. For some of us who have tried this.. it has had disasterous something permanent bad effects. Its the drug which has done me the worst damage so far.

    For me, I was given it to trial for sleep.. it caused me a bowel prolapse (my gastro specialist at one point was wondering if I was going to need surgery due to this). If you look wikipedia (as long as it hasnt changed) it says that this drug has a physiological affect of slowing down the bowel peristalisis.. if you are me and have IBS-C already due to the ME this can be disasterous!.

    It took only a small dose of 10-15mg per day on a short 2-3 week trial for it to cause my bowel to prolapse (it made my IBS-C worst but I wasnt aware of that at the time due to the prolapse it caused and everything started going into that area which was expanding into my vaginal area and then later started coming out from my body). I was then on daily strong enemas for ages due to the after affects of this drug as it had caused my bowel so much damage that laxatives and other things didnt even help me to be able to go (I finally ended up after seeing two specialists and finding out that epsom salts in big dose helped but they are so foul that I almost vomit in having to take them). Before this drug, all I'd needed for my IBS-C was fibre supplements!

    A couple of others at this site who have ME too, it's given them a permanently paralysed bladders.. one of those was too cause of a short small dose trial of it. (Ive only heard of actual ME people so far getting these kind of severe issues with it).

    (In my case, it didnt even work at all on my sleep either. I tried sooo many different things for sleep).

    This being said.. you do need to sleep so its a risk which will need to be carefully weighted up if you havent already tried this drug and are out of other options. Due to my experience and the 2 others at PR with this.. I'd say trial it only at last resort if you have ME.
    Last edited: Apr 11, 2014
    merylg likes this.

See more popular forum discussions.

Share This Page