Orthostatic Intolerance in PwME (POTS?/NMH?) - discussion thread

I also wanted to mention that I feel much improved after 5pm. It's the mornings and early afternoon that affects me the most. My CNS is much calmer in the evenings.

 

Never had OI symptoms before ME. The worst in my case brainfog. I went from a final year uni student to not being able to read a book, immedialtely.

 

I definitely had POTS or OI for years before I got ME with PEM. I used to work for 12 hours without any issue, and then after a viral infection in college, I could only be upright for a few hours without having a strong urge to sit or lie down and keep my feet up. And when I had to get an ECG before another college admission, my resting heart rate was in the 90s and the doctor asked me why I was anxious about getting an ECG!! And then one thing led to another, and I got ME with PEM after 4-5 years of having OI/POTS.

 

I don't recall any OI symptoms before ME but that was decades ago so memory may not be reliable. However, frequent fainting was the reason I was first taking to the doctor after a bad virus so it must have been a prominent change in my parents' eyes. OI was also one of the only 2 issues that persisted in some form through all remissions and relapses (the other one was PEM)

Interestingly, how my OI manifested changed significantly over time. I suspect all pwME have some sort of underlying OI/bloodflow problem but how - or even if - it shows itself in an individual at a given time then depends on other factors like genetic background, comorbidities, ability to move around, compensatory mechanisms the body has developed over time, etc

The possibility of an asymptomatic underlying bloodflow issue of course means that even if we didn't have any overt OI symptoms before ME the problem may have already been brewing under the surface - which isn't really a helpful thought at all, just makes everything even more complicamated

 

I did. I didn't know why I felt rotten if I had a bath, or why I definitely needed a seat for the whole train journey in the morning but could stand for a bit in the evening, or why I wound my legs around each other when seated. But I do now!

 

I've made a thread for that paper, with accessible link to the PDF here.

 

In this discussion was the idea that decreased cerebral blood flow would be associated with enlarged perivascular spaces. Now there are a range of possibilities for why that might be the case, but picking up the slack for waste clearance is a theoretical. A preprint today, looking in the context of atherosclerosis and stroke is —

Brain cerebral blood flow with MRI-visible enlarged perivascular space in adults (2024, Preprint: MedRxiv)