I didn't want to curse it as my illnesses often wax and wane and are quite unpredictable. However it has been probably about 6-8 weeks since I started my new supplement stack and I have consistently been getting a little better.
Surprisingly I didn't really have a major crash when we moved. Moving is very taxing on able bodied folks and it wasn't long ago where simply taking a shower was triggering a full on PEM crash.
Overall I am feeling better. The only thing that hasn't really improved and is getting a little worse (though it always gets worse with season changes especially going into the cold season) is my pain and stiffness.
But my overall energy is better. I can tolerate a few more minutes a day of upright time and yesterday I did one minute of exercise laying down. No exaggeration normally activity like that would leave me in a full PEM crash and completely bed bound for weeks.
I also am seeing a huge improvement in what I call the sensory overload. It's basically a chronic migraine state-senstivity to all inputs such as light, sound ,smells(I have super smell, a little scary at times tbh)pain and a feeling of being overwhelmed(this feeling is similar to and looks like anxiety but it is really just sensory overload)
I do not drive anymore for multiple reasons. The top reasons being I faint too much when upright and also even a quick drive can trigger PEM. In general I do not like being in a car at all-not just because I get severe vertigo/motion sickness. There are too many stimuli and my brain has a hard time processing it. I find myself sometimes "shielding" my eyes/ears when there are too many cars/things gong on. This is an unconscious thing. I do not deliberately duck and cover in a simple car ride.
Lately that hasn't really happened. I get out of the house about once a week for an hour long trip Usually take out or lunch outing) and this overwhelmed brain inflammation feeling is almost non existent.
My POTs is still a huge problem. I am better now I am off the beta blockers and using nattokinase and huperzine a, but it's still really severe and I can only be upright a few minutes (sitting) before my symptoms get really bad. Side note: ME/CFS patents even those who do not have POTS have an average of 25% reduction in blood flow to the brain.
Last week I was able to stand and have a conversation for 10 minutes. I did have a but of a mini crash and needed a 3+ hour nap to recover but I still did it.
Even if these improvements do not last I am still pretty damn proud of myself because all these improvements are from my research-no doctor has ever helped me. I follow the research very closely and often experiment on myself with different supplements and sometimes medications (meds are from online clinics that offer off label meds for longevity not from my actual doctors IRL).
The oxaloacetate stack and the POTS stack seem to being working synergistically. These supplements are quite expensive to take regularly but they are helping and since I can't get doctors to try actual treatments it's the only option I have.
I would love to be able to get weekly IV infusions. My upright time would more than double. I have very difficult veins (hard to get an IV in and very hard to get blood out) and I'd need a port but can't find a doctor willing to do that. Lots of POTS patients improve significantly with IV saline or Myers cocktail. I myself benefit from this but it is quite expensive and most nurses have a very hard time with my veins.
Doctors , at least the ones I have seen simply do not see my illnesses including POTS as anything worth treating (except beta blockers which for me and many POTSies do not work nor do they help blood flow to the brain)
Overall improved a bit. Still mostly bed bound but at least i am not crashing all the time.