Sleep Apnea And Dysautonomia

[Rosie]

Hi All-

I'm new here. I must say I am glad to find others with Dysautonomia but sorry that we all feel a need to be here.

I was diagnosed with Mitral Valve Prolapse with Dysautonomia about 30 years ago. Just recently, about 21 months ago, I was diagnosed with Sleep Apnea. What has been surprising and pleasing is that treatment with a CPAP has helped tremendously with the Dysautonomia symptoms. There is a bit of research which indicates that the ANS is really stressed during Apnea events, that the effects of the stress tends to carry over during the day, and that treament with CPAP can mitigate the effects.

I would love to talk with others who have both disorders, and find out about your treatment and results. If you don't mind sharing, please do. I hope there will be more research in this area before long.

Looking forward to hearing from you.....even if you don't have both disorders.

Rosie

[Dawg Tired]

I have Obstructive Sleep Apnea, however, I cannot use a C-Pap. For some reason it gives me a severe headache. On a couple of occasions we have tried different machines, and I always end up in the ER for treatment of the headache.

Apparently, there is a small percentage of people who just cannot tolerate it.

I had surgery in 2000 for the OSA, but it didn't seem to help much. Last year I went back to an ENT to see if there was anything new on the horizon that might help me, and I once again ended up in the ER with the headache. So, I guess I'll just live with it.

[Ernie]

Hi,

Welcome aboard.

Since I have been using my CPAP I have not fainted getting out of bed. That's a first in 20 years. I am much more rested also.

[Maxine]

Welcome to our little group................

I was also diagnosed with apnea recenty, and my EDS doctor thinks it's related to my EDS---(ehlers danlos syndrome), and cervical spine/cranial instability. I also have dysautonomia/POTS.

I couldn't tolerate the c-pap nose mask well on my face as it bruised the area. We need to try the mask with the gel. I only tolerate the one that fits on the nose. My oxygen didn't get terribly low--(91%), but I had 51 respiratory episodes in 3 hours. I woke up every time which left my sleep terribly fragmented leaving only a 41% sleep efficiency. The sleep specialist did not think it was related to my POTS. However, he said it sure won't help it, and said I need to get it fixed....

Just another thing I have to get done.

Maxine :0)

[Sunfish]

hi rosie -

welcome to the forum. i'm so glad that treating your apnea has brought improvement in your autonomic symptoms. this makes a lot of sense to me b/c without even delving into technical or physiological specifics, it would stand to reason that alleviating any constant physical stressor (in this case sleep apnea) could readily lead to improvement in any chronic condition that tends to be sensitive to physical stressors (in this case dysautonomia).

i also have sleep apnea (mixed, aka central & obstructive) which is thought to be part of my dysautonomia. unfortunately for me treatment (CPAP) hasn't improved my autonomic issues at all. i received the apnea diagnosis in late 2005 and actually have significantly declined health-wise since that time, but my nights themselves are much more restful in that i don't wake up every 15-20 minutes. these frequent arrousals were my biggest "symptom" of apnea & it took me some time to get a diagnosis as i didn't fit the "typical" profile, i.e. wasn't overweight, didn't snore at all, etc. i really can't get a decent night's sleep without my machine - or take a nap for that matter - so am very thankful that with the right mask i haven't had a problem tolerating the machine.

there are a handful of others on the board with apnea & there have been some discussions in the past so you may want to do a search for past posts as well. info re: how to do a search (and other things) can be found under the "helpful hints" at the top of the forum page or via the direct link http://dinet.ipbhost.com/index.php?showtopic=5555.

hope this helps,

melissa

[Rosie]

Hi Y'all (yes, I live in the South )

Thanks for stopping by and letting me know you are here. And thanks for the welcome. Since Dysautonomia can be so difficult to treat, and many docs just don't get it, I think it is wonderful that a bit of compressed air can be beneficial to some of us. I do hope the word spreads about this.

Dawg Tired-

Have you tried starting with a low pressure and then increase the pressure? That is what I had to do, and my pressure is not that strong. It seems that some of us are just more sensitive.....though I guess that makes sense for those of us with Dysautonomia. Also have you tried the BiLevel.

I am truly sorry the surgery did not work for you. I think it would be awful to have Apnea and not be able to treat it.

Hi Ernie-

I know you are happy to be able to get out of bed without fainting. Fainting is very frightening, especially if you don't know when it will happen. I was about 7 years old when I fainted for the first time..... that is the first time I can remember anyway.

Hi Maxine-

Yep, it seems finding the right mask is very difficult sometimes. I have a cushion that fits just under my nose. It is very comfortable, although the headgear is the pits. I hope you will find what you need and let us know if it helps.

Hi Sunfish-

I am so sorry to hear that a CPAP hasn't been able to help you. I wonder if it is because yours is mixed? Do you have one of the newer machines that is supposed to work better for mixed apnea than the standard CPAPs?

I didn't fit the profile either, and so my diagnosis was delayed. The Dr. is see for Dsyautonomia (one I really like BTW) just shook his head and said, " Who would have thought it." when I gave him a copy of my Sleep Study results.

Thanks for the tip on Search. I will look.

TTYL

[Maxine]

I was also puzzled as I don't fit the profile. I've always been thin until a 30 pound weight gain from my meds---then lost 15 of it.

The sleep specialist said you can be thin----very thin, or average size, and still have apnea.

Maxine :0)

[Kitsakatsa]

I have both, but this discussion is puzzling because I was told that the CPAP was contraindicated for use with patients who have problems with blood volume. I've never researched it for myself, but now that your replies are here- I think I had better! The machine was hard to tolerate, but I'd love to try it again. Afterall, what about our lives is easy to tolerate anyway?!

[Dawg Tired]

Yes, they tried it from the lowest pressure.

[BuddyLeesWife]

Hello again Rosie - Glad to see you found this site too!

I've posted a number of times regarding my husband's tremendous improvement since starting CPAP.

For those of you experiencing headaches with the machine - did your CPAP have a built-in humidifier? My husband's does but my brother-in-law does not and he gets headaches from using his machine. My husband's machine uses at least 8oz of distilled water each night and the hose is also heated which means he is breathing warmed moist air. Just a thought. I personally would have difficulty getting used to it but fortunately he has tolerated it well. His mask is one of the "gel" type masks that fits over the nose.

[Rosie]

Maxine-

I think Docs are going to have to be a bit more aware of the issues involving sleep. Sleep is so fundamental. If one is well rested, then it is easier to cope with other problems we have to deal with.

Hi Kitsakatsa-

Thanks for stopping by. It lets me know that there is another! I've never heard that about CPAP being contraindicated. It certainly has helped me.

Dawg Tired....That is sad. I backed up to a lower pressure and increased it one point every 2 weeks. And I also use the humidifier. That makes the treatment much more comfortable.

Hi BuddyLeesWife-

Yes, I found this one as well. There seems to be a great group of folks here. It is nice to see you again. It appears that more and more are being diagnosed with both disorders.

I've got to go. Got to get ready for a cook out. Take care all, and thanks for stopping by.

[Sunfish]

rosie et al -

per post-treatment (CPAP) sleep testing, my apnea is successfully treated when using the CPAP. so while the mixed apnea could be a consideration if i was still having apnea episodes despite attempted treatment, it isn't considered a problematic issue since the CPAP is working.

i wouldn't consider treatment to not be helping me though b/c prior to diagnosis/ treatment i had pretty much no restful sleep at all. it's just that it hasn't helped my overall health. no doubt though that i'd be in worse shape if i hadn't been diagnosed & started treatment when i had. we were without electricity for one night about a month ago and i literally was not able to sleep for any more than 20 minutes at a time; it was NOT fun.

part of the issue for me may be that since my condition overall is progressive it is hard to quantify something that helps as it may only act to slow down the progression rather than actually improve things in a more noticable way. this isn't something i'm certain of but just a thought.

melissa

[Rosie]

Melissa....thanks for clarifying. What you said makes sense. I too hope that further damage to my body will be slowed with treatment. I now have 5 stents due to vascular damage. Each time a stent was placed, I was told that it was most unusual to have blockage where it was actually located. None around the heart so far though. Had I known about the Apnea earlier in my life, however, I might have avoided the blockage and the stents.

I found an interesting site today, if anyone is interested: The International Classification of Sleep Disorders (classification outline).

http://tinyurl.com/yshl34

It briefly gives a description of several sleep related health problems. The 'Sleep Related Headaches' links include Migraines.

TTYL