My life is being ruined by reverse sleep - how do I deal with it?

Discussion in 'Fibromyalgia Main Forum' started by bretzie, Aug 3, 2010.

  1. bretzie

    bretzie Member

    I have CFIDS and not only do I have severe (feeling like I'm going into shock) weakness, but I have a weird kind of reverse sleep. It progresses. It was not so bad if I fell asleep by 5AM and could get up by 11 or 12PM, but now it's progressed to the point of my not being able to fall asleep til THREE PM and then I wake up at 1130PM. It's ruining my life.

    I need to go to this dental clinic but have had to cancel two appts already as they were at 6PM and I was sleeping. I've taken all sorts of sleep aides from Klonopin to Ativan to Melatonin, but nothing works. HELP. I NEED to be awake during the DAY so I can do things like get food, etc.

    I am so severely depressed over this it's awful. I already take Zoloft 200mg/day. I don't have sleep apnea and I am DESPERATE to get to sleep at the semi normal hour of say 2AM so I can be awake during the day. And to keep it there.

    Any ideas welcome.



  2. heapsreal

    heapsreal New Member

    One of my worst symptoms is insomnia so i know your pain. Zoloft i have found can worsen sleep problems, actually most antidepressant can except for the older style like doxepin or amitriptyline. If your insomnia is that bad, look into stock piling a few different sleep meds so you can rotate between them and reduce your chances of building a tolerance to them. Although melatonin doesnt help me sleep, when i sue it with other sleep meds it has helped me with strange sleep patterns. avanza/mirtazapine is an antidepressant which has good sedating qualities but i find taking it all the time it loses effect but if u add it to your other sleep meds to rotate between so u are using it once or twice a week it keeps working. When all else fails look into seroquel, it does take alittle while to find the right dose for this med but when it first works it will knock u out. But i do think u need to rotate between a few good sleep meds, this has helped me alot as i build a tolerance to sleep meds quickly, sometimes i still go through patches of insomnia where sleep meds dont work, then i just stop all sleep meds for a couple of days then back to my usual schedule. Also in reguards to zoloft, i would talk to your doc about tapering of it and look into a natural substance called 5htp which i have found helpfull for mood and its said to help sleep.

    hope this helps,
  3. bretzie

    bretzie Member

    Deadly deep depression was what I dealt with before Zoloft and I cannot risk that. I thank the angels I no longer have that. Maybe I should try taking Zoloft when I get up?

    It's really not insomnia as I sleep deeply and for 8 hours when I fall asleep, BUT at these changing strange hours. I was OK falling asleep at 5AM and waking at noon or so, but this diabolical disease has pushed the sleep time forward so now I can't sleep til around 4PM -- OMG that is so bad.

    I was reading some old posts and may have my adrenals checked into (the Clymer Ctr in PA is supposed to be excellent and will do consults by phone). I'm sure if I could afford it, getting bio identical hormones (I'm post menopause) would also help regulate this hell. But have so little money, it's pathetic.

    I just don't want to get into lots of sleep meds. Right now I am only using Ativan (for sleep and anxiety - in form of Lorazepam). Benedryl was suggested by my CFIDS MD, but someone told me that it and Advil PM suppress your hypothalmus which produces the good deep sleep.

    OMG -- what more, this is one hideous condition and especially if you are money challenged.

    Thanks a lot and good luck to you.


  4. DayByDazey

    DayByDazey New Member

    I take 2 Imipramine HCL 50 MG & 1 Clonazepam 0.5 MG at bedtime. This was prescribed 15 yrs ago when I had a sleep test done at a hospital & they discovered it was Restless Legs Symdrome. It has worked.... but, since I'm newly diagnosed with OA, RA, & FM, I've added Flexeril at bedtime. But with FM I do wake during the night now at times or up at 4:00 or in pain & flippin can't sleep period. Hope you find something quickly. You may want to ask about Imipramine & Clonazapam. Don't know if it'll help but just passing this along. I should be at work right now but down with muscle spasms from head to toe. Connie Sue
  5. karynwolfe

    karynwolfe New Member

    Wow, I can completely relate. The M.E. Association of the UK recently completed a symptom survey, and it said that reversed sleep-wake cycles are a severe symptom for 40% of patients. Not trouble falling asleep, trouble staying asleep, restless legs, sleep apnea, insomnia, or anything else that physicians are mostly used to dealing with, but just a completely reversed sleep-wake cycle. I understand, I do.

    While I can share my sympathy with you, I have since, in three consistent years of it occuring (as it used ot only occur in episodes), been unable to find anything that fixes it, either. =( It seems absolutely, irreversibly set, and mine also started at 5am-1pm sleeping... I hope it doesn't get as "worse" as yours has!

    Maybe you can go to Foggy Friends and ask them, they're a more M.E-specific forum.

    Please don't feel too depressed over it, if it's because you think you're lazy or just aren't trying hard enough. If you're dealing with this like I am, I know you've tried just about EVERYTHING to fix it, and nothing works. And then each morning (sorry...each NIGHT) you wake up and realize you "failed" again to reset it... But just like the weakness, this is not your fault, and goodness knows you are NOT lazy. What really helped me, was to go with it--function my day around the symptom just like any other symptom--to get the most out of my life.

    I might suggest changing antidepressants, though, if at all possible, as most people with M.E. have a serotonin sensitivity...

    Best of luck and if you find something that works LET ME KNOW!!!! =)



    Edited to add:
    ***Also: I doubt it's your adrenals, as I just had mine checked and they're normal.
    And, I doubt taking your Zoloft in the mornig will help, as that's when I take mine, whenever I need it (but I'm on a VERY VERY small dose because of the serotonin sensitivity issue, so everyone is different!)

    Not trying to shoot down any possibilities, just mentioning that I've already tried those options, personally :([This Message was Edited on 08/04/2010]
  6. spacee

    spacee Member

    I have had CFS for 24 years but this part has only started in the last couple
    of years. mentions ritalin being used experimentally for CFS.

    I took that to my doc and he gave me some to use. Most of the time
    I would not be able to leave the house until I have had the ritalin.

    Dr. Bell states that at times even ritalin want keep us awake. I find
    that true occasionally.

    Dr. Cheney states that a certain percentage of his patients are like that...
    my question for him is "how do they stay awake for their appt with him?"
    He doesn't say how they do it.

    Ritalin's generic, which is what I take, is very cheap. It is a very controlled
    rx, so you would need to find out how your doc orders it. In fact, I might
    have to go to a neurologist to get it cause my insurance wants hand written
    rx's and my doc's clinic has just gone to email only to the insurance company.

    Always hurdles to jump.

    Bless you.

  7. Juloo

    Juloo Member

    I have not had reverse sleep to the degree you describe, but there were many, many months of going to bed at 3 a.m., so I can relate.

    One thing I have noticed is that I metabolize medication very, very slowly. I was on a low dose of Ambien, taking it around 10:30 p.m. at night to get me sleepy. When I went off it, I realized that it was hanging on in my bloodstream waaaaaay into the next day, so now when I take it, I take it earlier (like 6 or 7 p.m.), and I take it with the evening meal. That was it doesn't effect me so long into the next day. You could be having the same effect with some of your meds.

    This is only a tiny, tiny part of the problems you may have, but I wanted to mention it as it seems like you are taking quite a lot of medicine. But maybe every little bit counts.
    [This Message was Edited on 08/04/2010]
  8. victoria

    victoria New Member

    I once read this I think in Julian Whitaker's newsleetter about how to reset one's sleep pattern. Of course, this was for 'normals', but it might work.

    The idea is to first set an 'ideal' time to be asleep by, more or less. Let's take 11 pm as an example.

    Since you're already staying up past 5 AM, do NOT let yourself go to sleep til 11 AM. Sleep 8-9 hours, then get up (even tho it's at night). Then stay up the rest of the night plus the next day until 5 pm. Again, get up after 8-9 hours. Then stay up until 11 pm. It's supposed to help, my 'normal' daughter did it once and it did help her; tho she let her schedule get off-schedule again.

    I think being a 'night owl' can be hereditary, as well as caused by likely adrenal and/or other hormonal fluctuations that are not normal.

    I also read a study in the last 6 months that showed taking a time released melatonin formula at very low doses (micrograms, not milligram dosage) at 7 pm, in bed by 10 or 11 pm, and then having to get up at 7 AM and being exposed to bright light immediately, made a difference with a group of people with sleep disorders. I'm sorry I can't find that study right now.

    Hope something helps you. I know how miserable it can be.
  9. LittleBluestem

    LittleBluestem New Member

    I have reverse sleep now. I can barely functions if I get out of bed before 2 or 3 p.m. I don’t really wake up and feel half-way decent until 8 or 9 p.m. I have difficulty getting to sleep before 5 a.m. and can easily stay up until 7 a.m. My physician gave me Rozerem (rameltion), which is a melatonin agonist and is supposed to help reset the sleep cycle. It helped while I was taking it, but once I stopped I was back to the reverse sleep (perhaps because I was not good at sticking to the schedule).

    I take only ¼ tablet. Despite a 15 minute half-life, if I take any more, I will sleep most of 24 hours. Even on ¼ tablet, I sleep most of the first 3 days. My physician says that may be because I am so exhausted from lack of restful sleep, since I do most of my sleeping during my wake phase. I have some more and am going to try it again. I just need to find 3 days that I can sleep through.

    Be very careful taking melatonin. That is what caused the worst of my problem. I had delayed sleep phase. I slept best between 2 a.m. and noon. I took melatonin to try to fix that and wound up with the reverse sleep. Afterwards, I read the correct amount and timing of melatonin varies from person to person and that if you take the wrong amount at the wrong time, you can make your sleep problems worse. Melatonin is best taken under the direction of a sleep specialist.

    Since taking the melatonin, my sleep cycle is much more entrenched. It is more difficult to get and stay awake during my sleep phase and more difficult to sleep during my waking phase.
  10. mbofov

    mbofov Active Member

    I think you should have your adrenals checked. When you say you have severe weakness, it reminded me of when my adrenals were shot. I was weak as a kitten. At that time my chiropractor diagnosed me with muscle testing (I'd already seen my regular doctor who was clueless). The chiro gave me Drenatrophin PMG (an adrenal glandular product by Standard Process) which helped enormously.

    Anyways, a few years I later contacted Clymer Healing Research and they did the Adrenal Stress Index Test, and foudn that my cortisol levels were skewed too high at night, which was causing severe middle of the night insomnia (although not like yours!)

    They gave me Seriphos (phosphorylated serine) which helped immediately to help normalize my cortisol levels with no bad side effects (although I had to take it in the morning - when I took it at night as recommended, it totally screwed me up).

    I bet there's a good chance your adrenals and cortisol levels are screwed up and affecting your sleep and that could be why nothing else you do helps. Nothing helped me until I got my cortisol levels normalized.

    Clymer is in Pennsylvania and I'm in California, and we did everything by phone, e-mail and regular mail. They really helped me. A few years after contacting them I redid the Adrenal Stress Index Test through a naturopath and my cortisol was in pretty good shape.

    Also, someone else suggested 5-htp. I've had really good results with that. Have you ever tried it? It may help as much or more as the Zoloft.

    Good luck!

  11. LindaJones

    LindaJones New Member

    Many people who have cfs have sleep problems.
    I recommend seeing a doctor who specializes in cfs.
    A real cfs specialist knows about all the symptoms of cfs and will try to help you manage your symptoms. I saw a lecture by Dr. Lapp and he said that people who have cfs have sleep problems and how to manage this symptom.

    Here is his website --
  12. Wireless

    Wireless New Member

    (First, my mini rant, skip it if you want.) I have this too, and everyone makes me feel like I'm stupid for not just fixing it. I try to explain to them it's part whatever DD I have, but it doesn't really help them understand. They think they know what it's like, they think to their own struggles of having to wake up early for work and how they HAD to do it, so they think I can do it too.

    My body clock is firmly set to go to bed right before sunrise, around 5-6 am. I am pretty sure that our bodies want this schedule and it's releasing hormones and forcing us to be on this schedule. There's some cyclist who was in excellent athletic condition and had a wonderful life, and then he got sick one day, and suddenly his life was upside down and he had insomnia and depression resulted too. He has this on a blog but I forget his name and stuff. People were not believing him and not being sympathetic and thinking he was insane. But months later he did end up finding a cure and it took time but then he was totally normal again and on a good schedule without really having to try.

    WHAT WORKS FOR ME somewhat (it's still not ideal) is to purposely change around my schedule. I can't always do this, but since sleep meds basically don't help me, then it's attacking the problem from the other direction. So you are not falling asleep til 3pm say. Then I say, purposely you need to make yourself stay up even later and later over the next days. Like, drink caffeine or take other drugs at noon and then you won't be able to fall asleep til 5pm, let's say. Or if I have something in my life I'm extra excited or stressed over, then I can't go to sleep. Which sucks, but you repeat and sometimes your body will make a big adjustment, so it's not like only 1-2 hours a day adjustment. When I am trying to make my schedule go forward (which is MUCH easier than going backwards, even experts will admit it), some days you slightly mess up and you go to bed a little early but overall usually an hour or two a day. Then at some parts of the day, it's easier. Once I'm staying awake til 10-11pm, one day I'll just be interested in a project and boom, my new bedtime is 2am, and then it happens again later that week and suddenly my bedtime is the 5am norm. Once I reach 11pm and 1am, I try not to move forward more, but it tends to go forward anyway.

    One thing that helps me sleep is if I had a balanced meal about 3-5 hours before I want to sleep for the night. The meal should have high glycemic stuff like jasmine rice. Since I'm sensitive potatoes and normal rice help a little too and I do much better if there was a good amount of meat. I also like to eat 10-40 mins before going to sleep on top of this. Turkey and milk would give you a little extra tiredness.

    Another thing that's huge for me is I need to avoid anything with any chocolate and all types of tea for 5-6 hours before I want to sleep. As well as avoiding any sugar for about an hour. And certain supplements or meds would be bad to take within hours.

    For waking up I do like having a sunrise alarm, it helps a little. And for going to sleep you can make it do a sunset where it dims slowly. Again maybe a little help. Also reading tends to make your eyes tired and you are supposed to avoid light in your eyes from computers/TV/lamps/fridge/whatever.

    Thanks whoever mentioned corn. I know that some foods are keeping me awake but haven't been able to figure out which. I can now suspect corn strongly. There are probably others.
  13. Wireless

    Wireless New Member

    Yeah, bright light upon waking helps me normalize a little too. You can buy sunlight/daylight lamps. Sometimes I'd be waking up in the middle of the night, like 10pm, and after a while it sucked getting no light for hours. So I would use my Verliux lamp at least.

    Also this is a tricky one, but I do fall asleep easily if I tired myself out in the day. That's part of the problem (for me anyway). I don't have enough energy to do tiring things, and I mostly sit around all day. But that can help a little bit, if I tire myself out once or twice, and therefore my body is just exhausted and ready for sleep at a semi-normal time (say 3am or 10pm), that's a lot better than a bedtime when it's daylight out. After falling asleep at the normal time once, obviously my body clock is not set there, but do it a second time if possible or use other methods to try to keep it there. Examples of how to get all tired out would be taking a road trip and walking around a park for hours that day. Yeah, it's easier to collapse in bed early! (Tricky part is that then I need more hours of sleep in the next 2 days to recover. So factor that in, extra hours.)

    I also use a sleep mask and earplugs when necessary. And it helps having a real human (or person on the phone) to help me wake and help me not have lights shining in my eyes before bedtime.

    I need all the tips I can get too.
  14. Wireless

    Wireless New Member

    Okay, yet another weird tactic I use is.... around the middle of your waking hours, somehow you get yourself to nap. The longer the better, like if you "nap" for 4.5-5 hours that would be ideal. But 3 hours is great, 1.5 hours is good. Sadly one way I could get myself to nap is if I got depressed and then cried a lot and then I was tired and had sore eyes. Or if something stressful happened and then I eat an extra big meal. Or pills. By doing that, your body clock gets confused I guess, or for whatever reason I find it easier in a way. It's a pain to stay on a schedule like that sometimes, but it has upsides and normally doesn't last, your body tries to change it.

    Also btw, there are some dentists that have late hours or early hours. When my schedule is a real mess and I am sleeping all day sometimes I will go to an appt that's early... some doctors/clinics can give you one at 7:30am or maybe earlier. Some dentists have 9pm appointments.
  15. masterson

    masterson New Member

    hi Mary,
    i have a question about seriphos clymer gave you. the brand they sell at their online store is weird-looking, it doesn't look like anything sold by or other online stores. could you please tell me the manufacturer (because i can't see it in that picture on clymer's site) and what ingredients it has. and also 1800 number on the bottle if any.
  16. LittleBluestem

    LittleBluestem New Member

    I have been having a particularly bad time sleeping the last week or more. I realized a couple of days ago that we have been having extremely hot and humid weather for a week or more. In that time I have not done any yard work, hung any laundry outside, picked any blackberries, or taken any walks. The only physical activity I have done is go to the grocery store.

    I have a rebounder that I use for exercise when the weather is bad in the winter. I did not think about using it now, but my window air conditioner cannot keep up in this extreme heat and it has been too hot to exercise in my apartment anyway. I think the lack of exercise has contributed to my poor sleep. Fortunately, the weather broke yesterday, so I too a walk last evening and used the rebounder tonight. I would be leery about exercising to the point of post exertional exhaustion. That can exacerbate ME, which is the source of the sleep problem.
    [This Message was Edited on 08/16/2010]
  17. mbofov

    mbofov Active Member

    I haven't bought Seriphos from Clymer for several years, although I did buy from them several times with no problem. On the front of the bottle on their website it says "phosphorylated serine", which is the main ingredient. You could call them and get the name of the manufacturer if you like.

    So I bought both from Clymer and from on-line stores and never had a problem.

    I strongly recommend getting the adrenal stress index test done. It gives a clear picture of your cortisol levels throughout the day and evening. And if they are always too low, then you shouldn't take Seriphos because they can go even lower.