OI and hypoxia

[Not dead yet!]

I was watching some of the media on this website and a question arose. Not specifically about the media, but they'd described Orthostatic Intolerance, where a person faints or has a dizzy spell upon changing body position from lying down to sitting to standing. Apparently the blood pressure lowers temporarily but severely and the person's brain can't get oxygen and plop.

I've never fainted, but I've felt faint and OI has solved a mystery for me. Even when I was young, I would occasionally feel a need to just lie down immediately wherever I was. I've done it on city streets, subways, in the gymnasium at school, etc. I never knew why. Then I was fine. It was like a rush or roar of water in my ears and I knew I'd have to stop for a minute. If I was in a car, I'd have to ask the person to stop so I could get out and lie down! It's very memorable and many of my friends from back then remember it. It seemed to stop after about age 25, but I also had more control over my schedule, so I might have planned around it without realizing it. I remember around that age spending entire days in bed "recharging" and mostly reading and napping. I had a rule that every weekend I'd do that for a day, or I'd be exhausted the next week.

I never considered it to be odd. My mom did the same but much less frequently, maybe once a month. Her productivity the rest of the time made up for it in spades. Ditto for me, as long as I got this higher requirement for rest, I was a firecracker. But when it became aches and pains, and mind fog, and I had to fight to focus my eyes, then the check bounced.

The part that I don't understand is this: If this is a documented obvious fact that people have this OI thing, then why do we tell patients that they're "ok" if their blood is oxygenated to 90% or higher? It seems like the clippy thing for my finger is just telling a lie. It's a tool that shouldn't be used with CFS patients I think. It can tell us nothing helpful. We need a way to know whether we've had a drop in bp, not whether our blood has sufficient oxygen. Is there such a tool? Or one that can tell us if our brain is oxygenated sufficiently? or has enough blood flow?

What if the vascular headaches are due to the body attempting to up the blood pressure so the brain can get enough blood?

 

[Horizon]

I think there are different categories of measuring oxygenation in the body. For example one can be severely anemic but the pulse ox will show up completely normal even though we know severe anemia = major oxygen problem. It is possible that OI has a similar mechanism that doesn't register on the pulse oximeter.

 

[Not dead yet!]

I think there are different categories of measuring oxygenation in the body. For example one can be severely anemic but the pulse ox will show up completely normal even though we know severe anemia = major oxygen problem. It is possible that OI has a similar mechanism that doesn't register on the pulse oximeter.

While I don't personally have an anemia problem, at least not to my knowledge, that make sense.

I posted that mainly to point out that sometimes the tools lead practitioners astray if they expect too much from it.

 

[Horizon]

While I don't personally have an anemia problem, at least not to my knowledge, that make sense.

I posted that mainly to point out that sometimes the tools lead practitioners astray if they expect too much from it.

Yep, most tools aren't helpful, we always appear normal it takes a more gentle and patient approach to see how things are messed up.

 

[Merida]

@Not dead yet!
This is a good topic. I thought about the same issue - that is the little pulse ox machine shows 90 or 91% or more, and I feel weak and need to lie down. What about this: The pulse ox machine is measuring the oxygenation of the peripheral blood system in your finger. But, this may not at all correlate with how well the oxygen is diffusing across the blood- brain barrier to the glial cells and nerve cells? So, we have fine oxygenation in the periphery, but not in the CNS. I expect vascular malformations in the brain could also be an issue to poor oxygenation, also inflammation in the CNS???? Must read.

 

[Merida]

Also, worried about LadyLeigh. She has not been on since Aug. 13. - she told us she'd been diagnosed with a brain tumor. Hope she is okay.

 

[Not dead yet!]

@Not dead yet!
This is a good topic. I thought about the same issue - that is the little pulse ox machine shows 90 or 91% or more, and I feel weak and need to lie down. What about this: The pulse ox machine is measuring the oxygenation of the peripheral blood system in your finger. But, this may not at all correlate with how well the oxygen is diffusing across the blood- brain barrier to the glial cells and nerve cells? So, we have fine oxygenation in the periphery, but not in the CNS. I expect vascular malformations in the brain could also be an issue to poor oxygenation, also inflammation in the CNS???? Must read.

Something that made me boggle happened this year, my mother in law felt bad one day and we took her to a local clinic (on a weekend) at CVS. The practitioner there (paramedic?) said we should take her to the hospital because she's having chest pain, shortness of breath and her oxy meter said 97%!! I was like, eh what? And I explained to her that I'd been denied a CPAP, etc and why and I always felt out of breath. "air hunger" etc.

She smiled with a bit of guilt in her expression, and said that it was age-based. An elderly person gets a different scale than a younger one.

 

[Merida]

@Not dead yet!
Hmmmm. Just don't know enough to comment. Think I would like to try hyperbaric oxygen???