A Little Bit Worried (Brain Damage)

[jangle]

Before my neurologist referred me to an even higher level specialist, I asked him about the potential for brain damage. He replied that the body will pass out before brain damage would occur, but if you land on a heavy object or if someone held you up for about 3+ minutes then you would suffer brain damage.

When I went to the even higher level specialist for my diagnostic testing, (This guy was voted the best doctor in America and in addition he is a professor at a top 10 medical school in the USA) he said that the brain has its own auto regulatory system which would prevent damage, but that once a critical blood pressure has been reached, the brain will automatically engage the syncope reflex.

However, some recent studies have demonstrated that in fact people with POTS do have reduced cerebral perfusion, and when I read studies like this:

http://www.ncbi.nlm.nih.gov/pubmed/13680276

http://www.sciencedirect.com/science/article/pii/0006899394903948

http://stroke.ahajournals.org/content/25/5/1022

All of these studies basically showing brain damage from chronic states of hypoperfusion. Now granted the length of the hypoperfusion is on the order of months which in rat time would correspond to years in humans. Additionally the levels of hypoperfusion were in the order of 25-60%. However, I think with POTS some people on this board report >30% reduction and studies are all over the place in regards to what our actual hypoperfusion levels are.

Is there a disconnect between emerging medical science on this issue? The doctor who told me not to worry is like I mentioned a highly respected researcher, professor of medicine, and internationally recognized clinical practitioner. But I'm wondering if he's going off an old philosophy that our cerebral perfusion isn't compromised.

[lieze]

I prefer not to spend any time entertaining worries like this.

I do not believe there is anything we can do to prevent it

And I think spending time worrying about all of the what if's most likely takes enjoyment out of life.

[yogini]

It sound like a big leap between hypo perfusion and brain damage. In my several years here I have never heard of brain damage, plus the top doc told you not to worry. I don't think this is a big concern for dysautonomia.

[Katybug]

jangle,

I understand your worry because when I first learned I had POTS this thought crossed my mind. Actually, it had crossed my mind well before my dx because I often feel like I have brain damage. But, as I got more used to having this disorder, I have been able to calm some of my fears and take some things with a grain of salt.

Keep in mind that our cerebral perfusion is only occuring when we are upright (and for some of us not all the time we are upright just some of the time). SO, that means we can help ourselves by laying down if we feel that we are too far gone at any given time. That being said, most of us are also living proof that our brains have do a built in mechanism to make us faint if it's not getting enough oxygen as the docsw have said.

One of the things I do to make myself feel better about this is to do the kinds of things they tell middle aged people to do to avoid getting Alzheimer's/Dementia, such as cross-word puzzles, manual math calcs, word searches, word scrambles, memory games, etc. Plus, these are a great way to fill time when you can't get out of bed on bad POTS days.

[icesktr189]

I went for MONTHS with pretty bad cerebral hypofusion and trust me I did not suffer brain damage As soon as my POTS got more under control, all my clear headed thinking came back and I did fine. I wouldnt worry too much over this.

[rubytuesday]

Thank you for posting, jangle.

I wondered, too if this was contributing to the worsening memory, ceasing in mid sentence in conversation and such all the time. My doctors assure me that it's not (but I also have Chiari I 7 mm and have not been able to get neuro to see the value in obtaining a seated/lying MRI). My cardiac specialist in dysautonomia was most concerned about the ailment being 4th leading cause of death in people like us/elderly--the injuries from the falls.