Once I realized that I was no longer suffering from PEM/Fatigue, I could zero in on dysautonomia alone.
I also don't have MCAS, so I have been fortunate to be able to try meds without having paradoxical reactions.
I started to notice various online "quasi-experts" all saying the same general thing about dysautonomia - in order to target symptoms (and maybe support recovery), you need to restore blood flow to the brain.
That's it - oxygen to the brain is job one.
I asked chatGPT for any papers that a doctor could follow (like a decision tree or flow chart) so I could understand how this might be supported with meds. I'll send you some of those links. Once I landed on the right meds for me, I started incorporating more exercise. I didn't really have a doctor helping me do this. I got a prescription for one med (I begged to just have a "trial run"), it didn't work, so I moved on to try another (this time, I just ordered from India Mart).
In a nut shell, doctors often start (and end!) with a beta blocker ("let's slow down that racing heart!")... this can help, but can also leave people feeling exhausted (slower heart with no other support to circulate the blood).
Most patients need more personalized medicine than that. Maybe they need meds that give you more blood pressure (like midodrine) or more blood volume (fludrocortisone). It's like a plumbing problem... or whack a mole.
If you can land on some supportive meds, and then approach more exercise, you can rebuild some muscle and these muscles also support circulation as well!
I can only imagine careful exercise is also important for rehabbing your nervous system so it becomes capable of directing blood flow appropriately once again.
I was swimming really regularly all summer. Swimming can be a great initial exercise for a person with dysautonomia. It keeps you horizontal (for optimal brain perfusion) you have mild compression everywhere (great for keeping blood from pooling in your legs) and it does an excellent job of regulating your temperature. At first, I only swam with just legs and then just arms, eventually I could do both at the same time without getting wiped out.
Rest is still important in this process I believe. I could still push too hard, and then would make sure to take time to lay down and recover & would try and go easier the next time.
So, in a nut shell - I did those two things: (1) I found the right meds to help my dysregulated delivery of blood to my brain & limbs and (2) I started working on reconditioning really diligently.
I'm not cured, but my dysautonomia symptoms are fairly minimal at this point. Some days, like today, I have no symptoms at all.
Here's one of the numerous figures (below) that I found useful in my quest to find the right meds. From this paper:
onlinecjc.ca/article/%20S082…
Here's another useful paper: pmc.ncbi.nlm.nih.gov/article…
And another:
aafp.org/afp/2022/0100/p39
Hope some of this helps! Best wishes.
Texas A&M researchers found that sodium butyrate, a short-chain fatty acid produced by gut bacteria, helped reduce post-traumatic seizures and promoted brain repair after traumatic brain injury in preclinical research.
More research highlighting the therapeutic potential of the gut-brain axis.
I suggest you read the thread yourself. It precisely matches my experience of suddenly having my perfectly healthy existence traded for a medical nightmare.
NONE of the Dr’s that I’ve seen seem to know…. anything. I ask them, do they see a lot of Long Covid patients?
“Nope, not seeing any… anywhere…”
I ask, “But how can that be? The research I’m reading says that Long Covid is striking a significant % of people, with enormous economic consequences across the globe. Fatigue is one of the most common symptoms.”
Them: 🤷♀️🤷♀️🤷♀️
It’s honestly shocking. It feels scandalous.
Doctors on Reddit routinely express their surprise & dismay as their patients continue to complain incessantly about “fatigue.”
“Why is everyone so tired??”
Top comment:
“Nothing you can do about it… life is shit & then you die…”
=> get a sleep study… it’s phones… THC… diet & exercise….
…tests look fine! hey- fatigue never killed anyone! 🙄😵💫🤬
So far, there has been ONE voice of reason.
The doctors are not ok… they’re not being educated & they are 100% confused by what they are witnessing.
I haven’t made up anything. This is the name given by the Long Covid researchers who discuss our subset of patients.
Give me the name of a prominent and respected LC researcher who denies PVS?
Even THE CEO OF MODERNA discusses the fact that THEY KNOW that their vaccine causes issues. This is the CEO in a recent interview discussing the “spike protein garbage” that “we think was creating some of the problem.”
So, now their product is garbage? Pretty strong language for something that isn’t causing harm, right?
