Help!!! Anyone w/Sleep apnea &CPAP Machine..I am frightened!!

Discussion in 'Fibromyalgia Main Forum' started by KathiM, Mar 21, 2003.

  1. KathiM

    KathiM New Member

    My one Dr ordered a sleep study so I did it 10 days ago and he just called me to tell me how severe I am with sleep apnea (waking every 27 seconds)plus not enough oxygen etc.

    I am to go back for another and to get fitted for that horrible machine (CPAP) I tried to do it the first time I was there but felt as though I was suffocating. He told me I have no choice or I will just not wake up some morning.
    Of course having to wear that to bed isnt a very good option!!

    He claims this is why my pain and muscle weakness etc.

    I need to hear input from anyone with this problem also.

    Thank you
    KathiM
  2. IngaDinga

    IngaDinga New Member

    I dont have much to offer but I wanted to tell you I am thinking of you. I am troubled horribly by sleep apnea and have an appointment for a two niht sleep study next month. I just know that they will prescribe a CPAP for me also and I am dreading it!!!!!!!!!


    I am sure you will get some more knowledgeable responses. Just know that you are not alone. Also, I have read that once you are used to the CPAP it really can help tremendously.

    Hang in there......
  3. turtis

    turtis New Member

    hey guys after my sleep study where they told me that it was so sever that they woke me up early to try the cpap machine and after a few hours of that where i did not sleep at all i told my doc NO WAY will i have a tire pump on my face (it was quite irritating) he told me that my apnea was bad enough that i might not wake up one morning. i asked what else we could do and he offered an operation called a UPP where they cut out you tonsils if you have them and your uvula and reconstruct the back of your throat. well i opted for that and my insurance said ok. it took about 2 weeks to recover and i lost 15 pounds becuse you cant eat right away.i must say that it was painful but now i can dream againand i sleeep much better and no DAMN machine with a monkey mask on but.... i have been told by people that have cpap machines and they say after a few months you get used to it and it helps tremendosly so thats my 2 cents good luck and let us know how things work out.

    kurt
  4. lagm31

    lagm31 New Member

    Kathi-My husband has the Cpap machine. He has 2 kinds of masks- the regular mask and what we call the nose pillows. There are also different types of masks. You should ask about them. He also said to tell you he felt that way for a few times because of the air being blown at your nose. That feeling will go away, and you will feel a whole lot better. Because you are getting more air and you wake up rested. Give it sometime and hang in there. Hope this helps. Lagm
  5. JLH

    JLH New Member

    Kathi,
    That sleep study was the pits, wasn't it! LOL

    I had the study done a few years ago and had it repeated last year. I just sleep with oxygen, but I know quite a few people who sleep with the CPAP masks and they say it has changed their lives -- for the better! I worked with a guy that always looked like he had been run over by a Mack truck because he could not sleep at night. After the study and him using the CPAP, he would come in to work looking well rested and ready to work! He told me when I had my study done to make sure I got the mask with a humidifier on it because without the moisture, the continuous flow of air will dry out your throat. My oxygen concentrator machine has a water bottle on it to humidify, too.

    Even my cardiologist has sleep apena and sleeps with a CPAP mask. He told me he sleeps like a baby now!

    According to my friends, it does take a little getting used to, but it's worth it to get a good night's sleep. :)

    I get tangled up sometimes with my oxygen tubing sometimes because I toss and turn so much, but it helps me sleep better.

    Severe sleep apena is dangerous, please give with the doctor suggests a try! Everyone wants you to wake up in the morning!

    Sleep tight,
    JLH
  6. KathiM

    KathiM New Member

    Thanks everyone for your messages........

    It helps to know that other epole are out there with the same problem and they are surviving it !!!
  7. pearls

    pearls New Member

    My brother has sleep apnea and uses the machine. It has really helped him. If he doesn't use the humidifier with it, he gets very uncomfortable, but sleeps very well if he does use it. His wife is happy because he no longer snores like he's sawing huge logs and the "white noise" of the machine is soothing.

    A good friend also has severe sleep apnea and the machine has helped tremendously. She has commented on the soothing qualities of the motor.

    I have sleep apnea, but have only had the first test, which came back mild-moderate sleep apnea. I haven't yet had the second test because of two bouts of pneumonia in the past four months plus a busy teaching schedule, but I'll take it in the summer. For me, the first study was only interesting.

    I don't think the image of a monkey-face is very helpful, though it is understandable. Sometimes medical procedures, medications, and appliances don't work well for us or make us very uncomfortable - or worse. When that happens, we need to tell the doctor! Usually there is a solution. I always have a mental picture of me camping out on the doctor's doorstep. That's a metaphor for what I plan to do if something doesn't work - and that's what I did, so to speak, until I got my diagnosis for this DD! If you've given the doctor a chance to find a solution, but he can't seem to find one, then you need to either find another doctor or ask to see a specialist who CAN help you.

    Good luck and best wishes,
    -Pearl
  8. paulajo

    paulajo New Member

    I have had a cpap since Nov and am finally gettng used to it. I tried the nasal pillows and HATED them but have a small triangular mask that fits fairly well. It is the smallest one I found. Anyway I believe I am sleeping better now. Yes, I hate having a contraption on my face but the alternative of surgery was not acceptable to me especially when the doc said it doesn't always last very long. Like everyone I hope I don't have to wear it forever but probably will. My brother has severe sleep apnea and loves the nasal pillows. He WILL NOT leave home without it. I have a heated humidifier and that in itself has made a hugh difference for me. I have Sjogren's Syndrome which caues a verrry dry mouth and I now wake up without a sore throat.

    Wouldn't it be lovely to have a simple life without devices, drugs and time consuming routines???

    pj
  9. vonda

    vonda New Member

    Hi kathim

    I was fitted for the cpap machine in November and it does take some getting used to, but I wouldn't sleep without it now. I sleep better as does my husband now. True I look like an alien, but that's better than the alternative. I suffered for years, but hopefully this also helps to get my fibro under control. Good luck
  10. gone2pot

    gone2pot New Member

    Hi Kathi! I used to work as a Respiratory Therapist (before CFS) and many of my patients told me of amazing changes in memory, concentration,fatigue and for some dramatic weight loss and reversal of high blood pressure as well. I suggest that you try your mask and machine during the day or in the evening so that you can get used to it. If you live in a dry climate use a humidifier because it will help you to be more comfortable.If you have troubles with a sore throat, you may have to look at a chin strap or nylon stocking to support your jaw during sleep so that the air doesn't take the path of least resistance and dry you out (not to speak of not maintaining adequate airway pressure to correct your apnea). If you are not comfortable with the mask, set aside time for another fitting to try different masks or the nasal pillows. Try to keep an open mind during the process if you can Kathi because the results are worth it. Make sure that you always use your machine with naps. Your brain and your body will appreciate it !!!. Heartfelt good
    wishes for your success with CPAP. KarenK[This Message was Edited on 03/28/2003]
    [This Message was Edited on 03/28/2003]
  11. KathiM

    KathiM New Member

    In the mean time I have gotten more info.

    Yesterday I went in and the tech spent about a hour with me and hubby and he tried on a few different masks and tried to make me feel comfortable etc for the next study which is going to be done this Monday night and hopefully I wont freak out as I did last time when they hooked me up to the CPAP. The tech had a good explanation and feeling for the CPAP : He said "It is like having hurricane Andrew blowing up your nose"
    He said it is important to have technical support with the CPAP and not just having some company drop it off and say BYE-BYE.....it is important to find the level of air pressure that you need and also be comfortable with it.
    My oxygen drops to a dangerously low level in the 70's and yes the Dr did say if I do not go this route that some morning i wont wake up so.......................I am only 47 and not quite ready to go yet in spite of all my troubles and all.
    The new Dr who I am seeing who suspected the problem with the apnea also did the diagnosis of the fibromyalgia.......he claims that the fibro and all that goes with it will be GREATLY helped once I sleep properly AND get the right oxygen during sleep.I think he mentioned doing "Klonapan" along with it.
    I am hoping he is 50% right and I would be happy.
    I can say that I am actually getting very excited for Monday to get here to get it over with and my own machine here in my home..... my husband is such an angel and so supportive and he really believes in all that this Dr. is saying.......
    I also had a cardiologist apppointment yesterday and showed her the results of the sleep study and she said I HAVE ot do it.....I also have an aortic valve defect and this apnea is putting a strain on the heart.

    Well........sorry for such a long post but hopefully we can all learn from each other.
    I firmly believe we sometimes have to take our own medical problems into our own hands and control it and do a lot of our own reasearch and go to different avenues that way.

    Kathim
  12. calling

    calling New Member

    Hello eveyone, I think I've had Sleep apnea for well over 12yrs now and I think its made me gain weight! Anyway I'm going to the VA to see what I can do for help. Can any of you tell me if you lost weight after getting on the cpap machine? Thanks, Ron
  13. Kloet4

    Kloet4 New Member

    I have just recently seen an internist. He thinks I also have sleep apnea. That was a new idea to me. Anyways I am being set up for a sleep study. I am nervous about this. So any info would be greatly appreciated. Thanks

    God Bless
    Lisa
  14. Momskelleygirl

    Momskelleygirl New Member

    The Cpap machine was not so bad once i got used to falling asleep with it, my problem was that i would always wake up in the moring with the mask off, and the machine turned off, and did not remember taking it off or turning it off. So, my doc got a humidifier and my mom would tape the mask to my face every night, and i sstill continued to take it off, my doc decided that i should have the operation. the ent doc instead of doing the normal tonsil and palate operation put a trech (spelling?) by passing everything else, so at night i just open the trech and have no problem now with the sleep apnea. The ent is going to do another sleep study after another 20-30 lbs lost to see if they can remove the trech.

    If you can get used to the machine htough it reallly isn't too bad. They can set it up where it starts low, and increases gradually while you are falling asleep. By the time you are asleep. you shouldn't notice the differnce in the pressyure.

    hope the best for you.

    Kelley