Can't use CPAP...... Help !!!!!!!!!!!!

Discussion in 'Fibromyalgia Main Forum' started by KathiM, Jun 7, 2003.

  1. KathiM

    KathiM New Member

    I have gone through 2 sleep study and have sleep apnea...I got the CPAP April 10 and have tried and tried to use it and have been through mask after mask and I can not tolerate it.......I actually feel worse after a nites sleep on it (I dont even get to sleep).....light headed nauseated etc........
    My oxygen level drops to 84 while sleeping but is O.K. during daytime.
    Wouldnt it make sense that if I cant tolerate the CPAP that at least oxygen at night would help ????????
    The sleep study Dr. is a total jerk......I refuse to deal with him........he has been rude to me and treated me like a I am an idiot............he loves my insurance though because all they do is bill-bill-bill !!!!!!!!!

    I cant do surgery !!!!

    I dont know what to do.........any suggestions ????????
    Kathim

    [This Message was Edited on 06/07/2003]
  2. lynnkat

    lynnkat New Member

    Hi Kathim!

    My husband says that his machine does improve his quality of sleep but he does have problems with the mask fitting properly at times. I don't know how he can sleep with all that on his face because for me I wouldn't be able to tolerate the mask on my face.

    His sleep doc is a really nice guy---gave both of us information about the machine and it's effects. You are correct about the cost of the whole process---$$$$. However--my husband snored so loud before that I could hear him downstairs even when I was watching TV. Maybe you just need a new doc although in our town there is only one doc who specalizes in this field so maybe it's the same with you.

    Why do some docs just have to be so rude anyway?? Don't they know that they work for us??

    Hope someone else here can provide some answers for you all I supply is a ((((HUG)))). Take care. lynnkat
  3. judywhit

    judywhit New Member

    found this in our library at this site last night. Printed it out for a friend and think it might be useful for you too.

    First Effective Drug for Sleep Disorder Identified
    ImmuneSupport.com

    06-05-2003

    In a clinical trial conducted at the University of Illinois at Chicago, researchers have demonstrated the first promising drug treatment for a common and life-threatening sleep disorder called sleep apnea.
    The drug, an antidepressant called mirtazapine, significantly reduced the symptoms of sleep apnea. It cut in half the number of times breathing stopped or slowed during sleep and reduced the number of times sleep was disrupted by 28 percent. All 12 patients who participated in the study showed improvement.

    "The drug provided the largest benefit and the most consistent improvement of any pharmaceutical therapy tested in controlled studies to date," said David Carley, professor of medicine, pharmacology and bioengineering and director of research at the UIC Center for Sleep and Ventilatory Disorders.

    The results of the trial will be presented this week at the annual meeting of the Associated Professional Sleep Societies in Chicago by Carley and co-investigator Dr. Miodrag Radulovacki, professor of pharmacology and medicine at UIC.

    "This has real clinical significance," said Radulovacki. "An estimated 15-20 million people in the United States suffer from sleep apnea, yet there is currently no cure and no fully effective long-term treatment for the disorder."

    Apnea -- which means "without breath" -- is diagnosed when a person periodically stops breathing for 10 seconds or more or has episodes of reduced breathing during sleep. People suffering from sleep apnea may stop breathing hundreds of times a night, often for a minute or longer. The disorder is associated with increased risk of high blood pressure, heart attack, stroke and adult-onset diabetes. Behavioral problems and cognitive impairments can occur due to insufficient rest.

    At present, sleep apnea is treated with mechanical devices, most often masks or nasal prongs, that maintain a continuous positive airway pressure. Such devices are uncomfortable, however, and difficult to use long-term.

    The 12 patients in the UIC study were between the ages of 20 and 70. They received one of two dosages of mirtazapine or a placebo an hour before bedtime. They were monitored throughout the night in the UIC Center for Sleep and Ventilatory Disorders after each of three seven-day treatment periods.

    The clinical trial at UIC followed years of laboratory tests of several classes of medications on a strain of rats that exhibit sleep apneas similar to the human disorder. Mirtazapine showed the most promise; other drugs either improved the condition only marginally or made it worse.

    Mirtazapine blocks the activity of a chemical in the nervous system called serotonin that is involved in regulating mood, emotion, appetite and sleep.

    The UIC study was funded by NV Organon, which markets mirtazapine as Remeron for the treatment of depression.

    Mirtazapine has not been approved by the U.S. Food and Drug Administration for the treatment of sleep apnea. Its use in this trial was approved by a UIC institutional review board for experimental purposes only.

  4. turtis

    turtis New Member

    i rufused to use the machine after my study. like you i could not slep at all...i chose surgury...it is called a UPPP...i cant remember what the entire name of the surgury was but they reconstructed the back of my throat and palet and removed my uvula. it took about 2 weeks to recover 1 nite stay in the hospital. it has been about six months and i am doing fine this might be a good alternative


    turtis
  5. Applyn59

    Applyn59 New Member

    I have not had a sleep study and was wondering if any of you have gotten any benefit from going to a dr.
    that specializes in sleep. The one in town who orders
    sleep studies is a D.O. listed as an internist but he
    is a pulmonary specialist. I feel like since I don't have
    lung problems that he wouldn't take me. I don't
    think I have sleep apnea. I have no sleep syndrome.
    LOL I doubt I could wear those masks.
    Don't they hurt your face? My face is a very tender
    area. I often wonder if oxygen would help.

    Lynn
  6. Princessraye

    Princessraye New Member

    I read your post title three times trying to figure out what you were talking about.
    Because instead of reading it as Can't use CPAP ....Help
    I thought it said Can't use CRAP ....Help
    LOL !!!!!!!!!!!!!!!
  7. KathiM

    KathiM New Member

    Thats aboout it.....with a CPAP.......NOT WORTH CRAP !!!!!!!!!!
    LOLOLOLOLOLOLOLOLOLOLOLOLOLOLOL
    Thanks all for your replys.............
    I forgot to mention that I WILL NOT and CAN NOT do the surgery route.......I also have mixed connective disease/lupus possibly so surgery is not in my vocabulary.

    I am real curious obout the oxygen though ???? Any thoughts ??????
  8. KathiM

    KathiM New Member

    Just saw your post........
    I am sure the DR in your town would see you...... most peole dont even know they have apnea and I am sure he would probably order the test.Since he is a D.O. and internest with a sub-speciality he is probably really good and into what he does.

    To answer your question .... I was made promises of how much better I would be and on and on and on and I have not seen one bit of dfference........as my REAL Rheumatologist said to me "There is no doubt you ahve sleep apne after seeing the sleep study results but honey.....the sleep apnea isnt making your blood sed rate so elevated ....that is entirely a different problem"
    The sleep Dr. who I saw is not listed very high in my book........he likes the almighty $$$. In a lot of areas you dont have much choice on sleep centers if any choice at all !!
    Good luck and I will be interested in knowing how you do.
    Kathim
  9. spatialbean

    spatialbean New Member

    and I love it. My cousin could not tolerate hers at all. She did what another person here posted, she wore it for a few minutes each day awake. Soon she was able to sleep with it. Also, it is really difficult to use a CPAP if your nose is full. I have to use nose spray nightly, and my cousin takes allergy medicine to clear her nose. Otherwise you feel you are suffocating, and I guess you are, you can't get any air moving.

    I don't know that oxygen would help, because the problem is that the tissues are blocking the air entrance, so the stronger forced air keeps them open so you can get oxygen in. I think you would still need to have the stronger push of air.

    The sleep center I went to in the SF Bay Area had many doctors, so if yours does you could ask to transfer to another doctor. Plus I worked for a doctor who specialized in pulmonary medicine, and he also worked with sleep disorders, so you could look for a pulmonologist who treats sleep disorders and take him your sleep study and records and get some additional advice.

    Love,
    Claudia
    [This Message was Edited on 06/08/2003]
  10. Applyn59

    Applyn59 New Member

    One of the drs. that I saw who ended up being a jerk
    wanted me to have a sleep study at his office. I ended up leaving him because he caused me too much
    trouble.

    I new sleep center has opened nearby. I do not
    want to have a sleep study though. I can't sleep
    until after 5 a.m. I don't think it would work! THe other
    dr. said I had to get there by 6 or 8 pm and leave
    early. That would mean leaving before I even slept!
    LOL

    I know I wouldn't be able to tolerate that mask thing
    on my face. I have a very sensitive face. My
    neighber uses a bipap. I should look at it. My
    father had sleep apnea and had that machine but
    he couldn't tolerate it. He was on oxygen 24/7 anyway
    for lung problems. His lung problems were a result
    of an injury, so not something for me to worry about.

    Thanks.
    Lynn

  11. donna13210

    donna13210 Member

    Two thoughts:

    Have you tried the nasal pillows? I have not, but I understand some people prefer them as there's no mask over the face. Don't know if they would offer any different results for you, though.

    I have mild sleep apnea. I tried several masks also. Even if I wore it most of the night I would not feel even the least bit better in the morning. One would expect to see even the tiniest improvement? Still felt as if I hadn't slept. For awhile there I was convinced apnea may be the cause of my fatigue, but I gave up on the whole idea and returned the cpap. I'm going to have to accept FMS as a diagnosis (for the rest of my life).

    There are several great sleep apnea websites with message boards that may offer more suggestions for you.

    Good luck,
    Donna
  12. KathiM

    KathiM New Member

    Thanks Donna for your reply.......
    You and I sound so much alike.......
    I could not use the nasal pilows or even a nose mask as after about 3 hours my nostrils just would close up and say
    "Hey.....enough of that hurricane blowing up my nose" needless to say I would wake up not breathing anything at all. I finally got the sleep center to fit me with a full face mask and it was so loud the first night it could be heard on the other side of the house not to mention what it was doing to me wearing it.......so I turned that one in and got a second one but......it is better but one wrong move and it leaks air so..................
    I agree with you......after some of the nights I felt worse.....it was actually scary. I was told it would make all the muscle pain and all disappear.....HOGWASH !!! LOL
    I am very disappointed.......
    I feel guilty for giving up and am just in a dilemma.....
    Thanks for your reply
    Kathim
  13. evansnuna

    evansnuna New Member

    I agree 100 percent about having the operation , UPPP. I had it done because i couldnt do the mask or nostril pads. The recovery is painful but worth every painful minute. after the operation i really really slept for the first time in 6 years
    jan