I need input desperately!!!! Please answer.

Discussion in 'Fibromyalgia Main Forum' started by clueless, May 18, 2003.

  1. clueless

    clueless New Member

    Is sleep apnea more prevalent in people with these diseases? I have been blaming my problems with thinking I am rolling onto my back while sleeping. With the klonopin + magnesium I am sleeping quite well but the last two nites I have awakened just gasping for breath. Very scary!! I have spells of being so sleepy it feels as if I could just fall over where I stand. This I have been blaming on the fibro. As yet I have not been diagnosed with cfs ( that is due to doctor problems ). Any input on this would be greatly appreciated!! Thanks, Clueless
    [This Message was Edited on 05/18/2003]
    [This Message was Edited on 05/18/2003]
  2. Jillian40

    Jillian40 New Member

    My heart goes out to you tonight.

    I must begin by saying that what you are experiencing is very real and not at all in your head or imagination. I truly do not agree with the person who posted above and I am a believer of God/Jesus. That person may have good intentions, but is perhaps misguided in their message. Unsolicited advice is not welcome here. There are many spiritual folks here, but "preaching" is never a good idea. This board is for support and unconditional regard.

    Sleep apnea is very real and can be damaging if left untreated, from what I have read about it. (My father has/d it so I've done research/reading). I believe a Sleep Study is the first step, followed by a prescribed treatment/ protocol. It may include a sleep mask, oxygen, etc. Certain sleep meds can aggrevate and cause serious problems, ie: further retard the breathing response. You may want to post to Mad Wolf and other doctor on line.

    Please be assertive about your symptoms, bring a family member or friend along to doctor, change doctors, or whatever is needed.

    I will pray for you and ask for God's guidance for your next steps.

    You may want to also "search" other posts, by putting in "sleep apnea" into the bar at the top of the page. Bet you'll find some helpful support/reading from others that have the same symptoms/condition.

    Consider Yourself Hugged, ...... Jillian

    P.S. The only thing I would add, Biblically Speaking, is that "Do Not Fear" is mentioned over a thousand times in the Book. God's hand is on you and will protect you as you search for medical help. Please know that you do not need to fear for The Creator will protect you as you sleep. He is awake 24 hours a day as he needs no sleep. I have felt true desperation, fear and anxiety about a set of unresolved symptoms, but I have learned that I can and must relax, trust, and believe that the one who has created us does not wish for us to perish. He has a purpose and a plan for each of us. Blessings to you . . . . . . .

    P.P.S. Yes Axis 1972 is who I was referring to. This was their 2nd post so they may not know the rules of conduct, and were way out of line.
    [This Message was Edited on 05/19/2003]
    [This Message was Edited on 05/19/2003]
  3. PatPalmer

    PatPalmer New Member

    There`s no easy answer to this.

    CFS/Fibro, has many causes, mainly bacterial and hormone imbalance which then lead onto other problems.

    Only thing I can suggest is to read all the posts that interest you and taking on board their advice or follow diet/supplement protocol.

    Most doctors have no idea how to treat this so unfortunately we have to educate ourselves.

    No one can answer your question because we can`t offer real advice without knowing All your symptoms.

    Sorry I can`t be more help right now other than suggesting taking Olive Leaf extract or eating raw garlic to help eliminate the pathogens invading you body.

    Love Pat.
    [This Message was Edited on 05/19/2003]
  4. layinglow

    layinglow New Member

    Sleep Disorders are very common in those with Fibro. Sleep Apnea, is not uncommon for many whether they suffer from these disorders or not. Sleep Apnea, is a very real condition, not imagined or created.... You need to address this with your doctor right away. Many with apnea, do wake up gasping. If you sleep with a spouse, or mate, you can ask them if they often hear you stop breathing, and then gasping for breath. My husband made me aware of this--I didn't even know it was going on. Some, too, have anxiety attacks, which cause the same symptoms. As I said, speaking with your doctor, and having a sleep study performed will verify this. It is very important to treat.
    Some people experience sleepiness with klonopin, I do not. My fatigue is due to CFS and Fibro. If you are having problems with your doc, may I suggest changing. It is so important to be seen by a knowledgeable doctor, who works hard to treat our CFS and Fibro agressively.
    Best wishes,LL

    What the heck was that a few message up? oh...my goodness[This Message was Edited on 05/19/2003]
  5. joannie1

    joannie1 New Member

    I would like to begin by saying that this "theaxis1972" should be absolutely ashamed of himself.. It is absolutely rediculous what he has posted on your post and he realy should feel ashamed of himself. And people like him DO NOT belong here. Take a look at his threads and that will tell you exactly why he should not be judging nor should he be saying anything to anyone period!!!
    I think that your fear is very real and that you need to speak to your Doctor about it. I too have woke up that way a couple of times like that and it is very real and very scarey. it could possibly be something to do with your meds I think.
    I wish you luck and again I am sorry that you had to have such a reduculous post up above.
    Take care,
  6. fibrorebel

    fibrorebel New Member

    Very sorry that you have a new worry, please call and report to your doc right away. We always need to report new symptoms as these illnesses are very complex and sometimes our symptoms are not related but can be easily treated. Will pray you get a fast resolution to all this.
    Keep us posted, ok? love Rebel
  7. fibrorebel

    fibrorebel New Member

    You took the liberty of reading Clueless' profile (or you wouldn't have known her age), yet you do not have a profile here, but I did check for your messages on other boards. I would just like to know why you felt the urge to be so very crass here when you certainly were not so insensitive on the other boards? Many of us here suffer from depression, rejection, awful pain, sleep deprivation,...etc. No one here needs to hear "Its all in your head", we get that stuff from the world. This board welcomes everyone with peace understanding and unconditional love. Sound familiar?
    Something like Jesus would have done, maybe? You know, Satan uses God's people to do his work sometimes...be careful who you are scoring points for, eh?
    We would all appreciate it if you are going to post here please be supportive and non-judgemental, in return we will support you in the same manner. Peace to you, Rebel
  8. PatPalmer

    PatPalmer New Member

    Are you drinking enough fluids? and also, I used to have mega problems sleeping if I had anything sugary/sweet in the evening. Chocolate is lethal, I`d never sleep a wink on that.

    Could just be something in your diet that`s made it worse the last two nights.
    Hope you have a better night tonight.

    love Pat.
  9. JLH

    JLH New Member

    is very different from the sleep disorders with fibro.

    You need to see a doctor regarding your problems. Sleep apena is a serious problem. You may also have some type of pulmonary trouble.

    Sleep apena is common in someone who is overweight. It can be diagnosed by an overnight sleep study.

    Hope you get checked out soon!

    P.S. If you are going for a sleep study, make sure your insurance pays for it, because they are super expensive! (Or at least mine was!)
    [This Message was Edited on 05/19/2003]
  10. MemoryLane

    MemoryLane Member

    From their (nih gov) website - always a good place to go for information.

    National Institutes of Health
    National Heart, Lung, and Blood Institute

    Facts About Sleep Apnea


    Sleep apnea is a serious, potentially life-threatening
    condition that is far more common than generally understood.
    First described in 1965, sleep apnea is a breathing disorder
    characterized by brief interruptions of breathing during
    sleep. It owes its name to a Greek word, apnea, meaning
    "want of breath." There are two types of sleep apnea:
    central and obstructive. Central sleep apnea, which is less
    common, occurs when the brain fails to send the appropriate
    signals to the breathing muscles to initiate respirations.
    Obstructive sleep apnea is far more common and occurs when
    air cannot flow into or out of the person's nose or mouth
    although efforts to breathe continue.

    In a given night, the number of involuntary breathing pauses
    or "apneic events" may be as high as 20 to 30 or more per
    hour. These breathing pauses are almost always accompanied
    by snoring between apnea episodes, although not everyone who
    snores has this condition. Sleep apnea can also be
    characterized by choking sensations. The frequent
    interruptions of deep, restorative sleep often lead to early
    morning headaches and excessive daytime sleepiness.

    Early recognition and treatment of sleep apnea is important
    because it may be associated with irregular heartbeat, high
    blood pressure, heart attack, and stroke.


    Sleep apnea occurs in all age groups and both sexes but is
    more common in men (it may be underdiagnosed in women) and
    possibly young African Americans. It has been estimated
    that as many as 18 million Americans have sleep apnea. Four
    percent of middle-aged men and 2 percent of middle-aged
    women have sleep apnea along with excessive daytime
    sleepiness. People most likely to have or develop sleep
    apnea include those who snore loudly and also are
    overweight, or have high blood pressure, or have some
    physical abnormality in the nose, throat, or other parts of
    the upper airway. Sleep apnea seems to run in some
    families, suggesting a possible genetic basis.


    Certain mechanical and structural problems in the airway
    cause the interruptions in breathing during sleep. In some
    people, apnea occurs when the throat muscles and tongue
    relax during sleep and partially block the opening of the
    airway. When the muscles of the soft palate at the base of
    the tongue and the uvula (the small fleshy tissue hanging
    from the center of the back of the throat) relax and sag,
    the airway becomes blocked, making breathing labored and
    noisy and even stopping it altogether. Sleep apnea also can
    occur in obese people when an excess amount of tissue in the
    airway causes it to be narrowed. With a narrowed airway,
    the person continues his or her efforts to breathe, but air
    cannot easily flow into or out of the nose or mouth.
    Unknown to the person, this results in heavy snoring,
    periods of no breathing, and frequent arousals (causing
    abrupt changes from deep sleep to light sleep). Ingestion
    of alcohol and sleeping pills increases the frequency and
    duration of breathing pauses in people with sleep apnea.


    During the apneic event, the person is unable to breathe in
    oxygen and to exhale carbon dioxide, resulting in low levels
    of oxygen and increased levels of carbon dioxide in the
    blood. The reduction in oxygen and increase in carbon
    dioxide alert the brain to resume breathing and cause an
    arousal. With each arousal, a signal is sent from the brain
    to the upper airway muscles to open the airway; breathing is
    resumed, often with a loud snort or gasp. Frequent
    arousals, although necessary for breathing to restart,
    prevent the patient from getting enough restorative, deep


    Because of the serious disturbances in their normal sleep
    patterns, people with sleep apnea often feel very sleepy
    during the day and their concentration and daytime
    performance suffer. The consequences of sleep apnea range
    from annoying to life-threatening. They include depression,
    irritability, sexual dysfunction, learning and memory
    difficulties, and falling asleep while at work, on the
    phone, or driving. It has been estimated that up to 50
    percent of sleep apnea patients have high blood pressure.
    Although it is not known with certainty if there is a cause
    and effect relationship, it appears that sleep apnea
    contributes to high blood pressure. Risk for heart attack
    and stroke may also increase in those with sleep apnea. In
    addition, sleep apnea is sometimes implicated in sudden
    infant death syndrome.


    For many sleep apnea patients, their spouses are the first
    ones to suspect that something is wrong, usually from their
    heavy snoring and apparent struggle to breathe. Coworkers
    or friends of the sleep apnea victim may notice that the
    individual falls asleep during the day at inappropriate
    times (such as while driving a car, working, or talking).
    The patient often does not know he or she has a problem and
    may not believe it when told. It is important that the
    person see a doctor for evaluation of the sleep problem.


    In addition to the primary care physician, pulmonologists,
    neurologists, or other physicians with specialty training in
    sleep disorders may be involved in making a definitive
    diagnosis and initiating treatment. Diagnosis of sleep
    apnea is not simple because there can be many different
    reasons for disturbed sleep. Several tests are available
    for evaluating a person for sleep apnea.

    Polysomnography is a test that records a variety of body
    functions during sleep, such as the electrical activity of
    the brain, eye movement, muscle activity, heart rate,
    respiratory effort, air flow, and blood oxygen levels.
    These tests are used both to diagnose sleep apnea and to
    determine its severity.

    The Multiple Sleep Latency Test (MSLT) measures the speed of
    falling asleep. In this test, patients are given several
    opportunities to fall asleep during the course of a day when
    they would normally be awake. For each opportunity, time to
    fall asleep is measured. People without sleep problems
    usually take an average of 10 to 20 minutes to fall asleep.
    Individuals who fall asleep in less than 5 minutes are
    likely to require some treatment for sleep disorders. The
    MSLT may be useful to measure the degree of excessive
    daytime sleepiness and to rule out other types of sleep

    Diagnostic tests usually are performed in a sleep center,
    but new technology may allow some sleep studies to be
    conducted in the patient's home.


    The specific therapy for sleep apnea is tailored to the
    individual patient based on medical history, physical
    examination, and the results of polysomnography.
    Medications are generally not effective in the treatment of
    sleep apnea. Oxygen administration may safely benefit
    certain patients but does not eliminate sleep apnea or
    prevent daytime sleepiness. Thus, the role of oxygen in the
    treatment of sleep apnea is controversial, and it is
    difficult to predict which patients will respond well. It
    is important that the effectiveness of the selected
    treatment be verified; this is usually accomplished by

    Behavioral Therapy

    Behavioral changes are an important part of the treatment
    program, and in mild cases behavioral therapy may be all
    that is needed. The individual should avoid the use of
    alcohol, tobacco, and sleeping pills, which make the airway
    more likely to collapse during sleep and prolong the apneic
    periods. Overweight persons can benefit from losing weight.
    Even a 10 percent weight loss can reduce the number of
    apneic events for most patients. In some patients with mild
    sleep apnea, breathing pauses occur only when they sleep on
    their backs. In such cases, using pillows and other devices
    that help them sleep in a side position is often helpful.

    Physical or Mechanical Therapy

    Nasal continuous positive airway pressure (CPAP) is the most
    common effective treatment for sleep apnea. In this
    procedure, the patient wears a mask over the nose during
    sleep, and pressure from an air blower forces air through
    the nasal passages. The air pressure is adjusted so that it
    is just enough to prevent the throat from collapsing during
    sleep. The pressure is constant and continuous. Nasal CPAP
    prevents airway closure while in use, but apnea episodes
    return when CPAP is stopped or used improperly.

    Variations of the CPAP device attempt to minimize side
    effects that sometimes occur, such as nasal irritation and
    drying, facial skin irritation, abdominal bloating, mask
    leaks, sore eyes, and headaches. Some versions of CPAP vary
    the pressure to coincide with the person's breathing
    pattern, and others start with low pressure, slowly
    increasing it to allow the person to fall asleep before the
    full prescribed pressure is applied.

    Dental appliances that reposition the lower jaw and the
    tongue have been helpful to some patients with mild sleep
    apnea or who snore but do not have apnea. Possible side
    effects include damage to teeth, soft tissues, and the jaw
    joint. A dentist or orthodontist is often the one to fit
    the patient with such a device.


    Some patients with sleep apnea may need surgery. Although
    several surgical procedures are used to increase the size of
    the airway, none of them is completely successful or without
    risks. More than one procedure may need to be tried before
    the patient realizes any benefits.

    Some of the more common procedures include removal of
    adenoids and tonsils (especially in children), nasal polyps
    or other growths, or other tissue in the airway and
    correction of structural deformities. Younger patients seem
    to benefit from these surgical procedures more than older

    Uvulopalatopharyngoplasty (UPPP) is a procedure used to
    remove excess tissue at the back of the throat (tonsils,
    uvula, and part of the soft palate). The success of this
    technique may range from 30 to 50 percent. The long-term
    side effects and benefits are not known, and it is difficult
    to predict which patients will do well with this procedure.

    Laser-assisted uvulopalatoplasty (LAUP) is done to eliminate
    snoring but has not been shown to be effective in treating
    sleep apnea. This procedure involves using a laser device
    to eliminate tissue in the back of the throat. Like UPPP,
    LAUP may decrease or eliminate snoring but not sleep apnea
    itself. Elimination of snoring, the primary symptom of
    sleep apnea, without influencing the condition may carry the
    risk of delaying the diagnosis and possible treatment of
    sleep apnea in patients who elect LAUP. To identify
    possible underlying sleep apnea, sleep studies are usually
    required before LAUP is performed.

    Tracheostomy is used in persons with severe, life-
    threatening sleep apnea. In this procedure, a small hole is
    made in the windpipe and a tube is inserted into the
    opening. This tube stays closed during waking hours, and
    the person breathes and speaks normally. It is opened for
    sleep so that air flows directly into the lungs, bypassing
    any upper airway obstruction. Although this procedure is
    highly effective, it is an extreme measure that is poorly
    tolerated by patients and rarely used.

    Other procedures. Patients in whom sleep apnea is due to
    deformities of the lower jaw may benefit from surgical
    reconstruction. Finally, surgical procedures to treat
    obesity are sometimes recommended for sleep apnea patients
    who are morbidly obese.


    The mission of the NCSDR is to support research, training,
    and education about sleep disorders. The center is located
    within the National Heart, Lung, and Blood Institute (NHLBI)
    of the National Institutes of Health. The NHLBI supports a
    variety of research and training programs focusing on
    cardiopulmonary disorders in sleep, designed to fill
    critical gaps in the understanding of the causes, diagnosis,
    treatment, and prevention of sleep-disordered breathing.


    Information about sleep disorders research can be obtained
    from the NCSDR. In addition, the NHLBI Information Center
    can provide you with sleep education materials as well as
    other publications relating to heart, lung, and blood

    National Center on Sleep Disorders Research
    Two Rockledge Centre Suite 7024
    6701 Rockledge Drive MSC 7920
    Bethesda, MD 20892-7920
    (301) 435-0199
    (301) 480-3451 (fax)

    NHLBI Information Center
    P.O. Box 30105
    Bethesda, MD 20824-0105
    (301) 592-8573
    (301) 592-8563 (fax)

    U.S. Department of Health and Human Services
    Public Health Service
    National Institutes of Health
    National Heart, Lung, and Blood Institute
    NIH Publication No. 95-3798
    September 1995

  11. clueless

    clueless New Member

    Thanks Joannie, Rebel + others for your answers and for your answer to Theaxis 1972. Some people seem to get enjoyment putting others down it seems. I have a very real reason for being concerned about having a problem breathing. I almost choked to death when I was in my twentys and had a 2 yr. old son. I had an abcess form in my throat between my wind pipe + spine. I lost my ability to breath + could not bend from the top of my head to my hips and my jaws were locked shut caused by the pressure on my spine. I went thru spinal taps etc. as they thot it was polio or meningitis. I was rushed to the hospital where I stayed for two weeks where I had over 70 shots of antibiotics to shrink the abcess. Now I am sure they would have found a way to drain it but that was 50 yrs. ago and it was not in a very easy place to get to. So-----we all have a reason for our fears and choking to death is mine. Clueless
    I know God`s hand was on me as I took that ride to the hospital lying on my stomach as that was the only way I could get any air thru my teeth so I could breath at all.He is always near!![This Message was Edited on 05/19/2003]
  12. Smokeymar

    Smokeymar New Member

    I used to have an awful problem of falling asleep no matter what I was doing, or where. Yes, I have driven on the interstate highway asleep. It's really scarey to be woke up by those air horns the semi's have and to realize you are in a different lane than you were!!!
    My meds and lack of sleep were my problem. I discussed it with my pain doc and he immediately started me on Provigil. Now I can stay awake all day. No more sleeping on the highway either. Drug is kinda expensive but totally worth it. I stopped sleeping in beds and now the dog and I crash out on the sofa (two recliners put together to make a "love seat" type of deal.) I sleep much better there than I ever did in the bed. Just an idea, but, you might look into the Provigil. It really works, and taken early in the morning, it is worn off by bedtime.
  13. jwock

    jwock New Member

    Dejavu, I think that Jullian40 was refering to an inappropriate message from some person going my theaxis1972 that has since been removed. So she wasn't accusing you of being unhelpful. She was just responding to the bad removed post.

  14. joannie1

    joannie1 New Member

    Yes, there was a post removed that was very rude and heartless directed to clueless. It was quite upsetting and it upset some of us that he directed that type of attitude to clueless or anyone on this board for that matter. No need to worry it was not anything directed to you post okay. And clueless your welcome. We have to help each other the best that we can around here. We are all most of us have.
  15. SPR30

    SPR30 New Member

    Hi! I have FMS,CFS and several other conditions, arthritis,etc... I take Klonopin and it is serious medication. How long have you been taking it? Could it be causing your fatigue? It's a central nervous system drug and I find that it can make me hung-over and feel bad.(My Dr. insists I stay on it for many reasons.) Please think about your symptoms and when you began the Klonopin. Beware, though, that it is not a med you can stop taking suddenly. Talk to your doctor. And if you suspect sleep apnea it should be checked.(gasping for air in the night is cause for alarm.) Maybe your partner (if you have one) could talk to your doctor with you. Upon doing a sleep study your partner's input and observation are of importance. Good luck to you!
  16. AC77

    AC77 New Member

    You have sleep apnea. That is why you feel so tired during the day. do you take any opiods, ie, morphine, ocycontin, etc..? Klonopin is NOT good to take with sleep apnea as it will supress breathing and combined with alcohal and opiods becomes more dangerous....many times more. I would wean off the klonopin and see a sleep specialist ASAP. Sleep apnea is a serrious, yet correctable condition. Try sleeping with 2 pillows under your head until then and cut the klonpin dose, as quick as your body allows. try not and drink any alcohal within 4 hours of bedtime.
  17. Princessraye

    Princessraye New Member

    It could be sleep apnea, meds, whatever.
    But in my case, it was a mild peanut allergy. I no longer eat them and I no longer have the problem.
    For my aunt it was a chocolate allergy.
    Good luck