This is topic Anyone out there have Central Sleep Apnea? in forum Medical Questions at LymeNet Flash.

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Posted by Laura Jean (Member # 44625) on :
Hi All,
I've been away from the forum for a while, but thought I'd put this out there since I didn't seem to find another post about Sleep Apnea and Lyme.

I've had Lyme at least since 2013, female, 58 yrs old. Self-diagnosed over a year later after problems with imbalance, facial twitching and severe neck pain. I later saw an LLMD who gave me a clinical diagnosis. Was treated with 3 months antibiotics, felt better than ever and transitioned to herbals (Cats Claw and Banderol, B12 and Folate) last fall.
Was doing great for the next 4 months.

In March 2015 started experiencing heart palpitations and chest pain as well as dizzy spells. Have seen an emergency room doc, a Cardiologist and a Pulmonary doc. I requested testing for sleep apnea from the Pulmonary doc because I wake up gasping for air with snoring/or/snorting when this happens.

Did an overnight sleep study and was first (mis)-diagnosed with moderate to severe "Obstructive sleep apnea" (AHI of 22 events/hr). Returned for the 2nd sleep study last week to try CPAP machines but had a horrible experience. Could not exhale and after the technician tried all night to find the right formula with CPAPS and BIPAPS, I was exhausted, out of breath and with chest pains. Finally during the last 2 hours she used an Adaptive Servo Ventilation (ASV) that allowed me to breath somewhat normally and I slept for those 2 hours.

They changed my initial diagnosis to "Central Sleep Apnea". From what I understand, this type of sleep apnea stems from lack of signals from the brain that tell you when to breath (i.e.neurological) and can also be caused by congestive heart failure among other things.

I am to go back to the Sleep Center in a few weeks to get an ASV/or APAP machine - not quite sure exactly.

But all of this to say, or ask out there.... is this Lyme-related? Anyone else have CSA? It seems to be, as the new diagnosis of CSA is caused by neurological problems and not throat obstruction. And, if it is Lyme related, I guess that means it's time to go back to the LLMD (about a 4 hour drive from where I live....bummer!). My heart work-up checked out , no problems other than occasional (unexplained) heart arrhythmia...follow-up with Cardiologist is next week and I will have more results at that time.

Another question to put out there ... I mentioned the Lyme disease to my Cardiologist on my first visit, but he didn't make any connection...should I mention this again now that I know I have Central Sleep Apnea, or just leave that to my LLMD?

Any input would be greatly appreciated...thank you!
Posted by triathlongal (Member # 31684) on :
Yes I had Central Sleep Apnea as a result of Chiari Malformation which is a brain herniation causing compression of the spinal cord and brain stem.

I had decompression and brain surgery to relieve pressure and the CSA went away. For me it was not Lyme related.
Posted by Laura Jean (Member # 44625) on :
Dear Triathlongal,
Thank you for your reply. Fantastic that you had successful brain surgery. I had not heard of Chiari Malformation. I'm sure it was causing you other problems as well!

I'm glad your CSA went away.

I appreciate your input!

Posted by Andromeda (Member # 45866) on :
I also have a diagnosis of Central Sleep Apnea.

I tried A CPAP and a BIPAP. I failed both treatments.

I was told I then qualified for the retainer, but it costs $4000 or something like that.

My Apnea is so mild, I am not treating it. It actually improved a bit after treating my lyme.

My neurologist refused to look into lyme disease, so I am not going to go back. I may see if I can get retested in a few years to see if it is still a problem.
Posted by Laura Jean (Member # 44625) on :
Thanks for your reply! I just received my VPAP automatically adjusts to your breathing, similar to BIPAP but a little more advanced technology, they say. But the first two nights I failed miserably...I just get exhausted from trying to breathe "normally" with the mask and keeping up with all of the air leaks, oh my gosh, it's crazy. I don't know how people sleep with these.

I'm going to have to keep trying though, I have to report with follow-ups and they report it to my insurance. One thing I can say is that after trying to sleep with the machine and mask on for 30 mins or so... I feel such a relief when I remove the mask that I fall asleep like a baby, ha ha!

It might be time for me to restart an abx treatment. I'd be curious to see if that relieves this Central Sleep Apnea!
Thank you again,
Posted by Andromeda (Member # 45866) on :
My insurance company took my c-pap away from me, I stopped using it.

I tried all sorts of pressure changes and whatnot. I fully believe it is barely useful for central sleep apnea. If you fail, then you might get the ok for a retainer.

If it's mild sleep apnea, sometimes I'm not sure if the machine is worth the hassle. I was told I'm worse on my back, and that I should train myself to sleep on my side.
Posted by LSG Scott (Member # 21624) on :
vitamin d3 cured my sleep apnea i can tell you this after getting my hydroxy 25 d level between 60 and 80 my sleep Apnea, confirmed by sleep study, completely revolved

this doctor explains it here in this link very well

god bless Scott

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