Would like to know about sleep apena. Who has this and how are you being treated. I really think I have it. What were your symptoms? One of mine is to wake up suddenly gasping to breath. I have heard of a new trAny aeatment that goes just over the nostrils. I really do not think I could do a CPAP machine....Is it more prone for autoimmune patients? any and ALL feedback would be most greatly appreciated. Hoping I get all of your stories and symptoms...Thanks. sass
I have apnea. I gasp for air in the falling asleep process. I use a c-pap machine with the big ol' face mask and everything. I look like a scuba diver! Tried the things that just go under your nose but the air flow is too hard and hurt my chest. Now it's hard to fall asleep without my mask since I'm so used to it.
When I use it consistently I do notice I wake up better rested.
You should get tested and try a machine. My insurance covered a major portion of the cost.
Hi sass,
I am very familiar with sleep apnea and CPAP. CPAP really is the gold standard treatment and has been shown to reduce the effects of sleep apnea on your body over time. Besides the immediate effects of gasping and not breathing, it has long term effects like increased risk for stroke and cardiovascular problems. It is also linked to uncontrolled diabetes.
Jozee is right - getting a sleep test is the best way to go. There are actually many different sleep disorders, although OSA (Obstructive Sleep Apnea) is the most common. If you have a different sleep disorder, the treatment may be different than CPAP. It's well worth getting tested and talking with a real Sleep doctor. Again, many people acclimate to CPAP use and cannot sleep without it - my DH is one of them! He uses CPAP with Oxygen bled into the tubing as well. I believe that by doing this for years, he has added quality and quantity to his life. He has very severe OSA.
Good luck and keep us posted!!
KellyG
Sass, I have been through 4 sleep studies. I have a bipap machine that I can not use. I used to scuba dive and I got more air from my tanks than the machine. I was told that they can not provide that type of air regulation based on demand.
I get up 10-20 times per night with pain or to use the restroom. They say that I stop breathing often. I have gone to using meditation instead of sleep. I can quickly drop into REM. I had a real problem with the the bright spot light they had on me all night (infrared). These things do not fit what they think of as normal and I was told that they had issues with this. I was not to come within 8 foot of the doctors. I did not understand this.
Sass,
I told my GP that I was not able to sleep ( my brain felt like there were electric impulses constantly flashing) and I was tired all the time.
I did not wake up gasping for air, and I snored very infrequently. I went through 2 sleep studies; the second time I was to wear the CPAP machine; but I still did not sleep. I couldn't tolerate the straps on my face and head. I was told I would get used to it.
Months later I was diagnosed with SJS . I still had the machine at home but did not use it, I just could not tolerate the straps. I appears I have cranial neuropathy (tingling on face and head). My Dr that prescribed the machine did a second look at my test results and listened to my problems and my SJS symptoms, and said it was mild enough that I did not have to use the CPAP.
Since I have been taking plaquinel some of the tingling was subsided and I do sleep better. My brain is "calmer."
Weird things this SJS can do to us!
Jan
Yep, sounds like you have it. I use a cpap. I didn't think I would like it, but now I wouldn't think of sleeping without it. I now get deep sleep. You don't know how great that is until you've gone a while without it. I encourage you to have a sleep study done. You'll be glad you did.
Hi Sass, I just got diagnosed about 3 weeks ago, and have been attempting the cpap machine. I went and did the study - and no, it's not fun! But I'm glad I did. They said I had severe sleep apnea and had me get a machine. It's a very nice machine with an auto regulator. When they put one on me at the study, it was awful and made me so much drier than I already am. I was worried. But this machine has a nice controllable humidifier. That helps with the dryness.
I ended up getting a full mask and a nasal mask. My insurance let me get both because they are coded differently. I wouldn't have know that if I hadn't paid attention to a muttering comment the guys said. Also I can get a new mask every three months if I want.
That said, I have a love hate relationship with my cpap right now. More in the hate side. I think it will take quite a while to get used to. I think it's good for me, and it seems like I usually sleep better with it on. I don't wake up quite as frequently. But do I like it? NO. There is a little SD card in it recording data which I need to bring to my doctor. AghAgh. Oh well, I've been compliant. At least until this cold hit. Pretty hard to wear it when I'm coughing and sneezing!
Yes, you ought to get it checked out. It's good to know. I still don't even have the full report back from the doc yet, so it takes a while. She told me that sleep apnea if left untreated can cause all sorts of health issues. Great,, that's all I need is more. Or maybe some of my issues are because of the apnea.
Good luck on your sleep apnea journey!
It took me a while to get used to mine. Sleeping on my back is very difficult for me and sleeping any other way with the mask is hard to do. I finally found that if I sleep on my side with my face near the very edge of my pillow it is comfortable. The mask sort of lays down the edge of the pillow and the exhale air hole thing doesn't get blocked. There are times where I still talk it off during the night without knowing it. When the mask starts to not fit right and it's time for a new one is when it's harder to sleep with it. It doesn't get a good seal on my face when it;s worn out which makes it blow air into my eyes.
I will go to my MD and get a referral to a sleep center soon. I feel like I probably have it. I snore loudly, yawn all day, extremely fatigued, feel like all the stuffing beat out of a rag doll, wake up gasping for air, high blood pressure not being controlled by meds,pain of course, huge dark bags under my eyes, if I do anything physical I yawn uncontrollably. The list goes on and on. I am a side sleeper and fear the cap will not allow this position. I do have an adjustable bed, so maybe I can adapt. How expensive is all of this with lousy insurance and a $5000 deductible? I really need some relief! I work full time and need sleep. I wish I could go on long term disability, but doubt I would qualify, as I am so concentious that I drag myself in limping and in pain. Help!
Sass
I'm a side sleeper too but if you lay your head on your pillow in the way I described above it will work.
Have the doctor get a authorization ahead of time so you know the cost.
As the following information shows, sleep apnea is associated with reduced levels of dopamine and acetylcholine.
http://www.webmd.com/sleep-disorders/sleep-apnea/news/20030707/faulty-brain-may-cause-sleep-apnea
Low levels of dopamine and acetylcholine are also implicated in many of the other associated diseases you have. For instance, Dr. Woods, the scientific director of the Fibromyalgia Association of America has discovered that Fibromyalgia patients lack dopamine. Dr. Lavin, another respected fibromyalgia researcher believes that dysautonomia (dysfunction in the autonomic nervous system) accounts for all fibromyalgia features. Acetylcholine is one of the neurotransmitters that regulates the autonomic nervous system. The other neurotransmitter is adrenaline. Adrenaline is derived from DOPAMINE. Dopamine is derived from tyrosine, as are both of your thyroid hormones thyroxine and triiodothyronine. So you can see how all of these diseases would be connected.
Dopamine, acetylcholine, adrenaline, thyroxine and triiodothyronine are all dependant on your ability to break down dietary proteins. If you lack pancreatic enzymes called proteases, you will not be able to make any of them.
Though I'm only SS-B positive, I do have sleep apnea. My serum CO2 is chronically slightly elevated. No other symptoms, though about a decade ago I woke up a few times gasping for air. A bit surprising since my AHI is 50 too. My GP and I agree that it probably has something to do with all the positive autoimmune tests. Been on CPAP using full face mask for one year now with no problems but not clear if it's making a difference anywhere else. I do feel better overall. It's really not hard to get used to - just spend some time experimenting with masks and/or accessories like mole skin, CPAP pillows, etc. Also be persistent, as I've noticed that problems do come and go. Masks, for example, seem to break in after a week or two by my observation for example. If you do have sleep apea, then you don't want to leave it untreated. When treated it is completely harmless with no side effects but when ignored it is comparable or worse than smoking.
I tried 5 different kinds of masks before I found the one that fits most comfortably.
I use a c - pap, and couldn't go without it now. I quit breathing so often during my sleep study that I must have been on my way to glory at any time. lol.....
I would wake up with a big gasp, but I didn't know that was a problem. I just thought I had a bad dream, until my husband had a sleep study and is on a bi - pap with oxygen.
susanep :)
Thanks for all the feedback. Going to call tomorrow! Hopefully I will find an answer this time, batting 0 so far on answers.
sass