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caledonia I wanted to ask you more about your central sleep apnea theory and if you are still having episodes of tachycardia waking you up while sleeping? This is how it all began for me in Jan 2013 (about nine mos after I had severe mono) and I was being woken up throughout the night with tachycardia as high as the 170's. I was diagnosed with IST (inappropriate sinus tachycardia) but at that time, the episodes were happening exclusively in my sleep.
My cardiologist at the time (I have since switched) did not think it was related to sleep but I fought to have a sleep study. For me the episodes were intermittent and I also took a beta blocker during the sleep study (which I now regret) and the study did not capture anything but insomnia. I do not have acid reflux, as you mentioned, so I know that is not the cause.
Did you ever figure out if you have central sleep apnea? This term was new to me with your post and my sleep study ruled out obstructive sleep apnea which I knew I did not have. My husband has this and wears a CPAP and his symptoms are completely different. Can CFS cause central sleep apnea? Why would the sleep doctor or cardiologist not know about this? I am not saying I have this but am just very curious from your post.
As I'm still on a very low dose of B12, I still get these episodes intermittently, but thankfully, they're in the mild range. If it gets bad enough, I can wake up feeling oxygen deprived and it takes of a couple hours of taking deep breaths to feel normal again.
I haven't followed up on central sleep apnea or done another sleep study or anything, as I feel it's pointless. Plus Medicare won't pay for another sleep study.
However, awhile back, I googled my symptoms and ran into a Yahoo group for catathrenia, which is not an exact match, but was the closest thing I could find. People with catathrenia stop breathing and then emit an embarrassing and loud groaning noise. I match the stopping breathing part, but not the groaning part.
Catathrenia patients often report having worse symptoms during stressful periods (reading between the lines, when B vitamins are reduced due to stress).
There are two people who have recovered from catathrenia. One was a fibromyalgia patient who took B12. She also fixed her fibro. Another is someone who switched to a completely organic diet, grassfed meat, lots of veggies, etc. If he goes off this diet, the catathrenia comes back.
There is another lady on the group who is trying methylation treatment. So far she hasn't had improvement in her catathrenia. But I did catch a mistake she was making, which was only taking adenosylcobalamin and not hydroxy or methylcobalamin. That was only a few months ago, so we will have to see.
I haven't been able to get anyone else in the group interested in trying methylation or even B12. Catathrenia isn't very well studied, and nobody can find treatment, (sound familiar?) so there isn't much help there.
Your docs don't know about CFS and central sleep apnea because most docs don't know about ME or CFS. I would think they would be able to diagnose central sleep apnea though, regardless of your other diagnoses. I could be wrong, but I don't think there's really any treatment for it.
If you were interested, you could do a search on here for central sleep apnea, breath holding, stopping breathing while sleeping, racing heart while sleeping, etc. Or make a new post doing an informal survey on the above. I think these type of symptoms are fairly common for ME/CFS patients.
In my opinion, what it all boils down to is B vitamin (methylation) deficiencies causing dysregulation of the autonomic nervous system, the vagus nerve, etc. Methylation treatment should be helpful, as well as helping ME/CFS.
As regular docs don't deal with vitamins, and methylation is a very new science, they're not going to figure it out - or at least not any time soon.