Jump to content

Recommended Posts

I was just had a positive sleep study for sleep apnea. I had 33 apnea episodes and was classified as moderate sleep apnea. Does anyone else have it? Did wearing a cpap help with the day time fatigue?

Link to post
Share on other sites

No, they don't have POTS. But I know that for me, sleep is one of my best medicines! You'll probably feel better once your body isn't waking up frequently at night to breathe.

It does take some getting used to the mask. They used to have masks that go over your mouth and nose, but now you should be able to get one that is much less invasive. My husband's has two cushioned nose pieces that have a connecting strap over the top of his head. It did feel wierd for him at first, when he started wearing his CPAP. But then he realized how much more rested he felt and it was so worth it! Also, his BP was quite high all of the time prior to being diagnosed with sleep apnea but now is normal.

Link to post
Share on other sites
  • 2 months later...

I have sleep apnea, and have a Cpap at night!! It has saved my life. I couldn't sleep, because of my tachycardia and sleep apnea, and I was dying from insomnia!! It is sooo much better. I'm on clonazepam at night, too. I'm much better rested, and function so much better during the day. My beta blocker, once we found the right one, helped also. I'm on Bystolic :)

Link to post
Share on other sites

Depends on the levels of sleep that you went into. If you go through all the stages and don't have an apenea or other issue, then they could probably tell.

I have sleep apenea and POTS. I wear the nasal type mask too and couldn't stand the other one. It takes allot of getting used to - but, I do believe it makes a difference. The best nasal mask I've tried is Opus 360. I've had about 6 different kinds and that was the most comfortable to me. You will have to probably use something for awhile to help you to go to sleep - because, until you get used to it - it will give you more tacky issues - it really wore on my nerves for awhile. Since I've added magnesium to my night time things to take - sleeping very well now and it has made a huge difference.

Link to post
Share on other sites

What worries me is that during my sleep study I only got 2.5 hours of sleep. But my doctor told me I don't have sleep apnea, but it's seeming like everyone who has POTS also has sleep apnea?

But probably 2.5 hours is long enough to make a diagnosis.

If I were you, I would go to another sleep clinic, which tests for more than sleep apnea, or go back and get a second night. Mine tested for respirations, nasal pressure, oximetry (Oxygen saturation in the blood), arousals during sleep, EKG, EEG, and limb movements. I only slept really well for about 3 hours, because even on my clonazepam, I couldn't sleep with the 128 wires, 16 leads ( 8 on my head), belts across my abdomen and chest, leaking mask, etc!! So I had a second night, took the ambien with the clonazepam, still didn't get much sleep, because the mask kept leaking, respiratory therapist kept waking me up to tell me to sleep on my back, and only had 2 REM episodes, which the average person has about 5 a night. So, all in all, to be honest, those were two miserable nights, but the rewards of my Cpap are amazing!! I have to have a total nose/mouth mask, because I mouth breathe a lot. I have a Resmed Quattro FX. I have a small face, and it is the best fit for me :)

Link to post
Share on other sites

I have moderate to severe sleep apnea. I was using a cpap machine successfully for a while and felt so much better. But unfortunately my pressure urticaria (have several types of urticaria) flared up and has not settled down and I find wearing the cpap machine really painful -- leaving deep red painful lines where the mask suctions onto my face. Now I sleep with a t-shirt with a sock tied to the back full of tennis balls. It stops me rolling onto my back (that's when my sleep apnea gets worse) and keeps me on my side (I'd be getting low levels of sleep apnea, then).

I've only recently been able to resume wearing the t-shirt as I had a back operation last year and was advised by the neurosurgeon who did it to lay off wearing the tennis balls t-shirt until I was sure it would not hurt my back. While i wasn't using anything to keep me from rolling onto my back I was getting dreadful sleep. I wake every couple of hours anyway but without anything to stop the apneas I was hardly sleeping at all and had become very foggy and became accident prone.

I've heard of one woman who also can't handle a cpap and she sleeps with a backpack on her back stuffed full of something -- I forget what. She needs that much bulk underneath her to stop her rolling onto her back during sleep.

From everything I've read you need to have a thorough test done at a very good clinic. I was lucky as there was a sleep clinic in the hospital where most of my doctors practice and the 'sleep doc' is well regarded as is his sleep labs and technicians. The whole set up is very professional. I've heard of sleep clinics that are just not that good.

Link to post
Share on other sites

blue,

some people have just as many apeneas on their sides. Have you tried a nasal mask? I wrap a thin scarf around all the strap on my face part and it doesn't leave marks that way and it is more comfortable. You could use a fine cotton, if you can't use silk or polyster. The nasal mask fits into your nostrils and the straps are on the sides and over the top of the head. There is a new one that only has one very fine strap - but, I haven't used that one.

Link to post
Share on other sites

Thanks Issie,

I appreciate your imput. I should have been a bit clearer. When lying on my side I very have low levels of apnea -- we know that from the test. it's when I roll over that I go from low level to moderate and then to severe -- so I know I get 'good enough' sleep on my side. Not as good as I used to get with the full mask cpap. I've tried every mask available. It was part of the service through the clinic. You didn't have to buy one until you'd tried out each mask to find out what was the most comfortable. I chose the full facial mask because I'm a full on mouth breather and a nasal mask just did not work for me, as the technician noted the second night of the sleep test, where they find out what pressure you need and also try to work out which mask fits best. Plus I found the nasal mask to be really uncomfortable, anyway. As you'd know, what works for some does not work for others. It takes very little pressure for me to get the deep red lines of pressure urticaria. The tennis balls sticking in side of my back that do effectively work at keeping me on my side do cause those marks and soreness but as it's my back, and a bit less sensitive the soreness goes away not long afer I get up. The redness lasts a bit longer.

As I said though, I do appreciate your imput. Especially as someone could have thought it their apnea would be okay if they just slept on their sides, which as you said, is not true for everyone with sleep apnea.

Link to post
Share on other sites

could you just sleep with your back against a wall, i.e. having your bed against a wall and then sleeping at the far end of it.

That might be more comfortable, but I don't know if it will work or not. Just a thought.

Have you talked with your doctor about your CPAP issues, he/she might be able to find something that better accommodates you.

Link to post
Share on other sites

Hi Jangle,

Are you posting to me? If so thankyou for your response. I have tried to sleep every which way. Problem is that unless I have something that will physically stop me rolling onto my back, as soon as I go into deep sleep I slide down and onto my back. You'd think the body would register it was 'bad' for it to sleep that way and just naturally sleep another way. But it doesn't. Unless it's pain. I was naturally lying on my side before I had my back surgery last year because if I rolled over onto my back the pain prompted me to get back straight on my side straight away.

Link to post
Share on other sites

There is another option. It is an appliance that fits over your teeth and moves your lower jaw forward - which keeps your tongue from dropping back into the back of your throat. It doesn't work for everyone, but does work for some. I was told that allot of the problems with apenea is the anatomy of your face and throat. I have a very short neck and lower bottom jaw - my father and I look so much alike - and he also has apenea. I was told that size of the body made no difference in whether or not one gets apenea. But, facial and neck structure do. As we age, the muscles in our throat and neck area relaxes and they said it would happen. I thought that possibly losing weight would make a difference. But, the docs are saying no. With so much new information that is out on apenea and what that can do to our bodies. It's so important that we get enough oxygen while we are trying to sleep. The consequences of not - can be the difference between life and death. And also health and unwellness. They told me I had no options but to get used to the cpap. There are times where I just CAN NOT wear it though. And when I do wake up - I have horrible headaches and feel bad for the whole day. It does seem to trigger more adrenal type surges - initially. But, I've learned that putting it on before I try to go to sleep and getting used to the feel of it - helps my body to settle down and quit fighting it.

For those of you that think this might be an issue. Please get help for it. It really is something that shouldn't be overlooked. There are two kinds of apenea. One is obstructive - which is where the tongue drops back into the throat and obstructs the air flow. The other type is called central apenea. That's where the brain doesn't tell you to breathe. I have both types and it is imperative that I TRY my best to wear it. It could mean my life. I know there is at least one other girl on here who has this too. I hope she will chime in. With our autonomic nervous systems misfiring and telling our bodies to do things at the wrong times - it is very possible that our brains are not telling us to breathe either.

Issie

Link to post
Share on other sites

I agree with Issie. It is imperative that if you have this, that you use your cpap. I am convinced that yes, obstructive apnea is bad enough, but with dysautonomia we have more of a chance of having Central Nervous System apnea, which to me is a very dangerous situation. As she said it is possible that we could stop breathing all together.

Actually, the average size neck for someone with sleep apnea is 16 inches, but my neck is 11 and a half inches!! So size doesn't mean a thing. My sleep doctor told me there is no such thing as a little apnea, either...it is a serious issue, that needs to be treated for those of us who have it.

Link to post
Share on other sites

I had the sleep study at Mayo Clinic and have mild sleep apnea - but desat to the low 70's. I could not tolerate the mask at all - so that was the end of that ... gave it my best shot. Insurance will pay for all the equipment if you wear it as ordered and if you have mild sleep apnea combined with hypertension... I wasn't surprised I couldn't tolerate it as I can't stand glasses, sunglasses, hats of any kind or scarves - don't even wear gloves or coats unless absolutely necessary - used to wear lightweight jacket wide open in 18 below zero winters! So to have all that gear - in order to help me to sleep? It was absolutely ridiculous - but I sure did give it a try - for about 3 months I think...

Link to post
Share on other sites

How do you know to you have sleep apnea? Or do you get routinely tested? What are the symptoms? Quite often while falling asleep i jolt awake repeatedly as feel like i have stopped breathing.This usually happens when i am a bit more tense than usual. ? Just sounds really serious and so many of us seem to have it.

Link to post
Share on other sites

Emma, regardless of having symptoms or not you should probably get a sleep study done as pots patients seem to have an increased risk of sleep apnea. The sleep studies are kind of fun too but I guess it depends on how talkative your tech is. Anyways waking up in the middle of the night especially with breath issues suggests you should see your doctor about it. Cpap is highly effective at treating sleep apnea and as others have stated is absolutely necessary to prevent damage to your body.

Link to post
Share on other sites

Emma, I totally agree with Jangle. You might need to be tested. It seems to me that people with POTS (possibly most forms of dys, I don't know) have more chance of having sleep apnea. And if you do have it, proper treatment can mean some real improvement in how you feel. I can't use my cpap at the moment because of chronic urticaria -- pressure urticaria is especially a real problem for me currently - but once I and the docs have found a way to get this under control I'll be straight back on my cpap. That way I know I'm treating it as well as I can. I"m not sure how it works in the U.S. but here in Australia the big hospitals seem to have sleep clinics. And for any Aussies that may be reading this, the tests can be done publically and cost you nothing but there will be a longer waiting time - just get a referral from your gp. I had private health insurance at the time so I was able to be tested the following week with no out of pocket expenses (which is unusal in Australia, we nearly always have to pay extra with private insurance).

It might interest some - at my initial appointment with the sleep specialist he was of the opinion that I most probably did not have sleep apnea. But he felt it best that I have a sleep study 'just in case' because I had POTS - plus I was insisting pretty fiercly that I be tested. I had the sleep study and at my next appointment with him, he was most surprised he said, that upon reading my results, to find that I reached severe levels of apnea during certain stages of sleep.

Edited by corina
medical advice
Link to post
Share on other sites

Do you just stop breathing or does your hr change too - does it stop too or go fast?

Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...