Hypoxemia during sleep due to mitochondrial and circulation problem


Active Member
I've been searching for the root of my problems for 15 years and finally may have found it. I've been down almost every road for ME/CFS and tried and investigated almost everything. I've been to Stanford ( Montoya and many others), UCSF ( many specialties), John Hopkins ( myositis center). Columbia (Fallon's Lyme group), and a full workup at the Mayo Clinic Rochester with very little to show for it. Then during mitochondrial DNA testing of a muscle biopsy at UCSF, a rather serious mitochondrial DNA problem was identified. It showed a 6 kb deletion in 15% of the mtDNA in he sample. This is 5 complete genes deleted which completely disables the mitochondria from producing ATP and energy. They are essentially dead. So that suggests my cells effected by this have an 18% greater need for oxygen on average than normal cells. This suggests my respiration/circulatory system must deliver 18% more O2 just to break even with normal.

One of my main symptoms has always been awakening feeling quite ill with GI, neurological and bodywide pain symptoms. I've dug into the GI issues and concluded that the constipation was causing SIBO and IBS but what was causing the constipation. Testing suggested problems with my smooth muscle and contractions while sleeping when "rest and digest" occurs under parasympathetic control ( enteric nervous system). But what was wrong with the enteric nervous system at night. I did sleep studies which showed no sleep apnea. I tried anti-seizure medication before bed and it did nothing. Sleeping wit supplemental Oxygen seemed to help sometimes. Watching myself sleep with video and audio showed nothing obvious. Then earlier this year the symtoms became unbearable. What was going on. It felt like Hypoxia?? maybe I wasn't breathing enough or my heart was having trouble. Earlier I had heart testing that looked ok but has something changed. I noticed from overnight pulse oximetry / heart rate testing that my O2 was a little low at 92%. I also noticed my heart rate was a bit low at 49-51bpm. Neither of these would be a problem typically.

But when you combine a low heart rate with low PAO2 combined with mitochondria that need 18% more O2 then things look suspicious. So I decided to try and artificially raise my heart rate while sleeping. First I tried caffeine and it seemed to work. Then I tried theophyline ( similar to caffeine ), and my heart rate average overnight was now 62bpm. All my symptoms were now gone. I tried reducing the dosage an my heart rate began to drop and symptoms began to return. Si I've been taking either caffeine or theophyline now for over a week making adjustments and its now obvious I have been starving my brain and muscles ( including GI muscles) for Oxygen for years while sleeping. Apparently it had varied depending on what medications I tried which would modify my depth of sleep and heart rate or respiration rate. I've just worn a ZIO-patch on my heart and had a Echocardiogram and not yet gotten results. If my heart is normal than its the mtDNA or other very basic Oxygen cellular perfusion or respiration issue. I'm curious if any has seen anything like this?

Get Our Free ME/CFS and FM Blog!

New Threads

Forum Tips

Support Our Work



Shopping on Amazon.com For HR

Latest Resources