Update on Sleep Study - or "Tossin' and Turnin' "

Discussion in 'Fibromyalgia Main Forum' started by Annette2, Aug 30, 2003.

  1. Annette2

    Annette2 New Member

    I had my sleep study last night. Yesterday was literally a nightmare for me! I was totally exhausted so by the time I got there at 8:00 p.m. I was a walking zombie! The tech met me at the door and had me first watch a video about sleep studies. Before I watched the video she took my picture (I don't know why). After the video was over, I went to my room and got into my nightgown, took my Neurontin and she attached all the wires to me. I got into bed, she shut off the light and said she would give me instructions through a speaker before I went to sleep. I had to lay on my back and close my eyes, then open them. Then look to the left, the right, up and down. I did that twice. Then I had to pretend to snore. Then clench my teeth; then flex one foot, then the other. She said in the middle of the night, at the middle of the study, she'd attach the Cpap machine if I needed it. So I laid in the dark, having a mild anxiety attack, hard to breathe, and then the RLS began. I knew there was a video camera taping everything and also that she could see into the room, watching me. That was weird. I guess I finally fell asleep, but it seemed I woke up quite a few times. Around 5:00 I woke up and told her I was cold. She came in and said the study was over. I assume I don't have sleep apnea because she never put the Cpap thing on. I asked her if I had sleep apnea and she said she couldn't tell me - the doctor would have to look at the study and tell me the results himself. So I took a shower and went home. All in all I feel I slept pretty badly. I tossed and turned a lot and did not feel rested at all. Today my husband and I went to a Blueberry Festival about 2 hours away. I fell asleep during the ride and woke up feeling better. Had a good day out with him. When we got home I washed my face and found red splotches all over my face and neck. I called the tech at the Sleep place and told her about it. She said they're probably from the tape she used. I look like a mess - all red and blotchty! If it doesn't go away by Tuesday I'll call the doctor. Meanwhile, my appt. with the doctor is September 12th so I guess I'll have to wait till then with the results. So I personally don't think I have sleep apnea - what else could this exhaustion be from? When I saw the sleep doctor he said he didn't think it's from CFS. I'm not anemic, my thyroid is under control - what could this exhaustion be from????

  2. ksp56

    ksp56 Member

    Glad to hear your done with your sleep study. I think I would have high anxiety!

    About the red blotches and the tape. I am allergic to anything but paper tape. Break out in HOT red blotches if it is used. I can't even use wax on my eyebrows! It's an adhesive too! Use Benedryl cream or the spray on type. It helped me immediately!

    Many Hugs,

  3. Juloo

    Juloo Member

    About a year apart. Got the second one for FREE because, although the first came back with "Markedly disturbed sleep", the sleep doc (ha ha, more like an apnea doc) said there was 'nothing wrong' with me. By the time I finally got copies of my results, I had read at least 2/3 of the 1500 page "Sleep Medicine" (3rd ed.), and was so irritated that I'd been brushed off.

    Incidentally, my first study was miserable also -- they told me I 'slept' about 3 hours, but I swear I was awake all but about 45 minutes. The second sleep study was nothing -- slept like a baby. But by this time, I'd started w/an alternative clinic, so I didn't have any of the weird anxiety spikes I had during the 1st study. It was interesting to see the 2 studies side-by-side.

    I only had very, very mild RLS, and it is gone now without being treated, but I really hated when it was at its worst. I remember getting an 'attack' in the middle of the day when I was grocery shopping. I had to keep walking, or I would have gone MAD. My usually 45-minutes store walk-through only took about 20 minutes, my legs were so hyper.

    Not sure if I can explain how the alt. clinic's theory works w/this. It's been about a year since I studied up and had it cold. My understanding -- normally when you go to sleep, cortisol is at a low. During the night, it rises, and at a certain level in the morning (usually), you awaken. With people who have been through stress/anxiety, etc. cycles, the body's HTP (hypothalmus, thyroid, pituitary???) axis stops working smoothly and can get stuck in the 'on' position -- pumping out adrenaline or other hormones when it shouldn't normally. You wake up -- for me, it took 2-3 hours to get back to sleep. Exhaustion. Anyhow, the idea of the place I was working with is to, among other things, turn off the HTP axis so that the adrenals can rebuild.

    Anyone who can explain that more accurately, please correct me. As I said, it has been a while, and I can't claim 100-percent retention!
  4. Annette2

    Annette2 New Member

    The blotches are gone today. I slept pretty good last night. Still am a bit groggy but not as bad as yesterday. I know I don't have sleep apnea - it's GOT to be something else! The tech at the sleep study said I got 8 hours of sleep that night - it just didn't feel that way to me. That happens to me a lot. I can't wait to get the results. They'd better show something! The sleep doctor was very encouraging that he can help me, so I hope he can!

  5. Annette2

    Annette2 New Member

    Thanks for the information! I don't know too much about sleep disorders. I know that sleep apnea is getting all the attention now, but I really don't think I have it. That delta wave business is interesting though. Why don't you go for a sleep study and find out exactly what is going on with you? Maybe there is something you can do to get better sleep. The only reason I did it is because I am at my wit's end - I find myself starting to nod off at work and in my car when I'm driving - that is definitely not good! So much stuff to have to deal with when we have this DD!!!!

  6. Juloo

    Juloo Member

    Yes, you can definitely have sleep problems other than apnea. From what I remember reading, there are over 70 different sleep disorders. The problem is, you need to make sure you find a sleep center/physician that is experienced in diagnosing them. That was one of my frustrations w/my sleep studies -- for some reason, for my doc, it was apnea or nothing. The fact that my study showed problems -- well, he just couldn't make the leap that there could be something other than the 'easy' solution. Or he didn't know any other solution.

    It really helps if you can educate yourself as much as possible -- if you haven't already, you might like to read "The Promise of Sleep" by William Dement, a sleep researcher. It is written for the lay audience and is very good at explaining the history of sleep medicine, studies, different disorders, etc. My paperback copy has a pillow on the cover -- that and the title used to taunt me when I was going through my insomnia phases (but at least I had time to read it).

    If you have a deep, deep need for in-depth information and have the where-with-all to mentally process it, then the 3rd edition of "Sleep Medicine" (William Dement is one of the editors) is *the* textbook for sleep medicine -- the 3rd edition is a significant update over the first two, so make sure you are specific (I ordered mine through interlibrary loan). It's really a fascinating book...unfortunately, after I read it, I realized that my sleep doc's school days were somewhere around edition 1, and he hadn't picked up a copy of an updated book since.

    Anyhow, "Sleep Medicine" has whole chapters on specific sleep disorders like bruxism, sleep paralysis, etc., etc. as well as the sleep basics. Warning: it weights a ton because of its 1500 pages.
    [This Message was Edited on 09/01/2003]
  7. Betsy2

    Betsy2 New Member

    I just don't know whether or not to believe in this disorder. It seems like a medical fad to me. However, I do know that I wake myself up snoring sometimes. THey say you wake up because you are gasping for breath but it seems to me I wake myself up because I am snoring so loudly. It has gotten so bad lately that I am annoying my boyfriend. I tried CPAP but couldn't tolerate it and insurance won't pay for anything more than CPAP with cool water humidity. I don't know what the answer is.
  8. Juloo

    Juloo Member

    My husband was diagnosed with sleep apnea over four years ago and has used a CPAP ever since -- even taking it on vacations. The first night he had it at our house, I kept waking up and poking him to see if he was alive...just like I did when my son was a newborn...because my husband was sooooooo quiet. I was used to sleeping with a buzz saw.

    Fortunately for my husband, he fit the typical profile -- middle-aged, somewhat overweight male. Doctors have a harder time accepting it in women, from what I've heard. It really does make a difference for him. When he temporarily stops using it because of a cold or something, the difference in his ability to deal with daily life is *very* noticeable. (He's a bear.)

    On the sleep study printout, among other things, they look for your blood oxygen levels -- above 90-percent is acceptable. On some results from a sleep board I used to visit, there were people there with results in the 50-70 range, and even lower. That, coupled with the hundreds of micro-awakenings during the night caused by the body's arousal reflex over lack of oxygen would not allow them to settle into any length of meaningful sleep.

    As far as cold-water humifiers, we live in a hot climate, so have AC on most of the year. Condensation isn't an issue until December. If you do some searches, you can find information on how to set up a heating pad to warm the water, and directions to make a sock to fit over the air tube to discourage condensation. And in case you have to do CPAP, *really* do your research on appliance choices -- insurance companies like to push their pet products, but if it isn't right for you, you won't use it. Some people get really freaked about air blowing into their nose, but I understand there is a new device, O-PAP, that you hold in your mouth.

    In addition, some doctors/dentists advocate a mechanical mouth appliance instead of CPAP -- this pulls the bottom jaw forward and a little apart, opening up the airway. Sometimes that helps, and you don't have to be hooked up to a machine. They are expensive -- $1500 and up is what I've seen quoted. Don't know anyone who has tried that.
  9. tinker-belle

    tinker-belle New Member

    my hubby is scheduled for one since he's a horrible snorer. But he is a good sleeper.

    I am a horrible sleeper. I cannot fall asleep, wake up with heart pounding and take hours to get back to sleep. I've been on ambien for 17 months but want to learn to sleep without it, problem is it's addictive.
    Can sleep centers do a sleep study on you while you take ambien?
    Any info would be great. THanks a bunch!
  10. Sissy123

    Sissy123 New Member

    My sleep study said I woke up 96 times in 6 1/2 hours. I also never went below a stage 2 sleep. I had 15 myoclonus episodes. I was taking oxycontin, neurotin and trazadone at the time. I just dont sleep. I take klonipin for RLS and it completely helps that, but I have become use to it and dont sleep well anymore. That is why I feel tired. Sometimes I dont sleep until four or five in the morning. that happens to me alot. When everyone else is getting up, I am going to bed. Then I get up about 10;00. Sis