Sleep studies for non-sleep apnea problems

Discussion in 'Fibromyalgia Main Forum' started by TKB, Jan 1, 2007.

  1. TKB

    TKB New Member

    Hi,
    I have been reading postings about sleep studies, but most seem to discuss sleep apnea as the primary sleep problem. I don't think that is my problem at all, I just wake up every 2-3 hours - I have trouble falling and staying asleep even though I take meds to initiate and sustain sleep, also wake feeling starved 1-2x/night, and get up to go the the bathroom frequently. I have checked my night time blood sugars and they are normal. No bladder infections, just a diagnosis of "unstable bladder." I am so frustrated that I can't sleep for more than 2-3 hours without having to "start all over" with food, meds, trips to the bathroom all night long! By the time I get to sleep the rest of the world is waking up. I drag myself out of bed around 9:30 - 10 am (unless I have to go to work). Tomorrow night is my first sleep study and I am not sure how to proceed with it - my doctor said not to take my sleep meds, but then I probably won't sleep at all!

    Also, I'm not allowed to take a nap tomorrow. I usually don't nap, but recently I've been having a difficult time staying awake between 4-7 pm.

    Help!

    TKB
    [This Message was Edited on 01/24/2007]
  2. LittleBluestem

    LittleBluestem New Member

    Because sleep apnea is the most common sleep disorder, that is what most sleep doctors are looking for. Find out if your sleep doc is a pulmonologist or a neurologist. Neurologists are more likely to know about sleep cycle issues. Of course, you could get lucky and have a pulmonologist that does.

    ‘Normal’ blood sugar can be subjective. What is called normal by the health care profession may not be normal for all individuals.
  3. TXFMmom

    TXFMmom New Member

    Sleep studies can and do diagnose restless leg or periodic limb movement, non-restorative sleep, and other problems which can be medically treated, at times.

    They can, at least supply you with answers and can diagnose sleep apnea, as well.
  4. zenouchy

    zenouchy Member

    TKB,

    Best of luck on your sleep study! I hope it goes well. I'm thinking about getting one too, and I'm not sure if I have sleep apnea either. I can relate to what your wrote re: blood sugar issues and going to the bathroom frequently.

    Have you seen a good, competent endocrinologist about your blood sugar issues? Blood sugar issues can be much more complex than meets the eye. For example, you can have a normal blood sugar reading and still feel hungry if your "feel full signals" are delayed and not telling you that you are full after you finish eating, as is the case with me. I was only the second patient in my endocrinologist's office that had this condition.

    When this occurs, you will get a normal blood sugar reading but still feel hungry for awhile until the food digests (there's a medicine to correct it, but I don't like the side effects). This drove me NUTS for almost two years and a very competent endo. missed it. If you don't know what's going on, you will think it's time to eat and can wake up "hungry" until you figure out that your body is tricking you a little bit....and indeed it's tricking you because if you've eaten enough, your body doesn't need more food.

    Obviously, this may or may not be your situation. There are other endcrinology issues that may not have been addressed, or you may have side effects from meds that may make you hungry. Whatever it is, it's preventing you from sleeping well.

    Did you get any help for your "unstable bladder"? A diagnosis is helpful but without any recommendations to treat it, you won't be able to sleep! If your urologist won't treat the condition, you might want to possibly consider seeing another doc who will treat the condition as well. Being both starved at nite and having to go to the bathroom all nite long will not help you sleep, so getting those two things managed better by caring docs will help you out a lot! Then you can see how you are sleeping too. Let us know what happens. Hope things get much better!

    Warm hugs, Erika
  5. TKB

    TKB New Member

    Hi Erika and others,
    I had my sleep study and as I suspected didn't have any sleep apnea, restless legs, etc.

    Results were basically that I have zero "0.0%" stage 3 and stage 4 sleep (the deep stages). During the sleep study I used several sleep meds throughout the night and had my usual several trips to the bathroom and ate a few times and in general had a difficult time sleeping. I spent about 3 hours in the middle of the night without any sleep. The results of the sleep study never mentioned any use of meds even though I told the sleep technician I kept using them, nor did it mention my night-time hunger/eating, trips to use the bathroom, etc.

    It seems that sleep studies/doctors mostly care about sleep apnea and my "problems" were not really dealt with other than to "be careful driving."

    I did my own follow-up by consulting a "sleep specialist" who is a neurologist, I believe, and was given a prescription to try Lamictyl, an anti-seizure med. It's about the only med I haven't tried for sleep...it's to calm down my nervous system to help me sleep better.

    Some nights I seem to do better since starting the Lamictyl and others are the "usual" - with hunger, unstable bladder, etc. The other night I set my own personal record and got up 4 times to eat - I was starved each time.
    I don't use Ambien so it wasn't related to that.

    I will continue to look for answers and will keep looking at the message board for suggestions.

    Good luck to all of you with sleep issues. Keep us informed if you find help!

    Thanks,
    TKB
    [This Message was Edited on 01/24/2007]
  6. mujuer

    mujuer New Member

    I don't mean to be a downer but I did not get any help after going to one of the top sleep centers in Seattle for help. I was there for three days. I did not have sleep apnea but the dr. wanted me on a c-pap machine just to see if it would help. I tried three different masks and got less sleep then before. I wasn't reaching stage 3 or 4 sleep which is common in fibro patients. Also showed restless leg and because they wouldn't let me have coffee or sleep meds, I slept during the day alot and so then they said that I had "sleeping sickness". Can't think of the new word for that (fog) and they didn't want me to drive anymore. They put me on xyrem which is a weird sleeping drug that you have to take and then set your alarm and take again in the middle of the night. No help either. I was also seeing a pain specialist and neither of them helped me at all. My small town rheumy dr. has helped me the most. I hope they can help you. I just don't give credit to everything they try on me anymore. I have been to so many drs. and tried so many different things.

    Much luck to you, really
    [This Message was Edited on 01/24/2007]
  7. roge

    roge Member

    My sleep disorder Dr. (a neurologist) didnt seem to think 1% in stage 3 and 0% in stage 4 was a problem, can you beleive these people???

    they only seem concerned with the more offical disorders of apnea, plmd and rls and REM issues (if get enough and Rem latency). I realize REM is important but excuse me NREM stage 3 and 4 is argueabley the most important stages of sleep and yet it seems like most sleep dr.s are completely out to lunch with this!!!

    If anyone can recommend a drug (prefer natrual) but willing to try a prescription drug that is known to increase stage 3 and or 4 WITHOUT and I repeat WITHOUT messing up your sleep architecture which includes suppressing REM sleep which often causes nightmares, then please let me know!!!!

    yes there is elavil, xyrem(for those with courage), neorotonin and a host of others no doubt and they SAY they increase deep sleep but first how do we know for sure (are there studies?) and even if they do at what cost, that is the cost of messing up your sleep architecture and or suppressing REM so if and when you decide to come off these meds, you are not REM rebounding every night for 2 months straight and left with nightmares long term.

    Obviously, if one is waking up 10x a night, then the above issue is a non issue and sleep drug is required but for those who are in no mans land sort of where wake up 2-3x and even for those who sleep mainly thorugh the night but who are still not getting stage 3 or 4 , then is a tough call to go the drug route to try and get the deep sleep not knowing the repercusions of this.

    Also, did you know there is slow wave sleep gene, mmm, could very well explain why so many if not all of us FMers and likely CFSers as well, cant get slow wave sleep (deep sleep). Genetics obviously play a role I believe in both FM and CFS but I just didnt know there was actually a slow wave sleep gene.

    Anyway, sorry I coulnt be more help TKB, you say you take meds to help you stay asleep, maybe you need to try other ones as there are many of them, have your tried trazodone or remeron?

  8. roge

    roge Member

    further to my post

    some here have stated this drug increases deep sleep, I would ask based on what?

    the literature (for what that is worth) states it suppresses REM and stage 3 and 4 and increases stage 2 so it just makes you sleep longer and many FM specilaists are cautious of this and the benzos in general for their detrimental effect on deep sleep.

    Maybe it affects certain people differently and obviously if people on here feel like it is helping and feel more refreshed with it, then great. But it there is proof and scientific studies that show it increases delta sleep, then I would love to know as I can't find any.

    By the way I have to use this drug on an as needed basis for my sleep onset myoclnus (another non recognized sleep disorder - lucky me - that most sleep dr.s have no clue about!!!). No this is not the "normal physilogical" sleep onset that another neuro tried to feed me , that most get once in a while like when your whole body jerks just as falling asleep , it can be many times and all parts of your body and is way worse in the day when trying to take a nap (it is almost impossible.) It is VERY CLEARLY a sleep disorder on the sleep myoclonus continum (ie. plmd, rls).

    I guess can you tell I am frustrated with doctors as I know many others of you are here.



  9. TKB

    TKB New Member

    Thanks, everyone, for your replies!

    I can't remember every comment and question, but will do my best to reply back.

    My diagnosis is "sleep disturbance" and I'm guessing that means (to a doctor) "I have no idea what to do with you other than try every med I can think of."

    Over the past 20 years I have tried the tri-cyclics (Elavil, etc.), recently doxepin (Sinequan) which gave me bad nightmares, Xyrem (giving me the worst night of vertigo and dry heaves I've ever had), Ambien, Lunesta, Neurontin, Gabitril, Klonopin, Unisom, Xanax, serotonin boosters, serotonin reducers, anti-psychotics that caused restless legs,herbs, etc. etc. I use ear plugs, etc. and all the good sleep hygiene recommendations, etc.

    I have tried many of these together and enough of them to put an elephant to sleep!

    When I asked the physician at my recent sleep follow-up re: meds to increase stage 3 & 4 sleep, she said that the only med known to do that is Xyrem....what it gave me was a night of hanging my head over the toilet and a bump on the head from trying to get off the floor while having vertigo!
    I'll never try that one again!

    My guess is that my nervous system just isn't shutting down for some reason...just stays in the "stuck on" position.

    My next plan is to try CD's that supposedly increase stage 3 & 4, or try a type of bio-feedback ("Heart Math") that uses computer games to teach your brain/thoughts to calm down, decrease heart rate, anxiety, etc. I don't really think I feel anxious at bedtime, I'm just a "night owl" with a nervous system that no longer wants to totally shut down...it's as though I'm hyper-alert....like when mothers hear the slightest noise a child makes during the night (I'm a mom), or from years of sleep deprivation from grad school, internship, etc. Maybe my brain just evolved over time to keep my in a very light phase of sleep because it had to do this for so many years??

    My sleep doctor didn't seem to think that absent stage 3 or 4 is a problem either (someone else reported this)!

    I used to be a very sound sleeper as a child and until I got CFS/FM at age 32...very strange!

    Has anyone tried the sleep CD's or the bio-feedback type programs? I have tried hypnosis and other non-medication based alternatives, and none of those worked either.

    One CFS article in the Chronicle talked about the problem of waking suddenly during the night in response to low blood pressure, low blood sugar, etc. The body suddenly responds to these with a jolt of catecholamines (adrenalin, etc.) to get the body to take care of whatever the problem is...but this wakes up the person. I mentioned this to the sleep doctor and she had never heard of this.

    Well, thanks again, for all of your comments. I really appreciate them!

    TKB