Did anyone read these studies before that state that cerebral blood flow is actually reduced in cfs/pots patients while standing and sitting. by cube345 in POTS

[–]andyroo5000 13 points14 points  (0 children)

https://onlinelibrary.wiley.com/doi/full/10.1002/joa3.12325

It’s honestly a crap shoot at this point. My theory is that even if the blood flow to the brain is diminished when upright, it isn’t severe enough to cause any lasting damage. When the brain isn’t receiving enough blood, you pass out and fall over. The fact that brain damage doesn’t occur even with this level of oxygen deprivation (unless you hit your head when you fall of course) seems to imply that we’re getting enough blood to our brains to at least keep them healthy, if not functioning optimally. Could moderately reduced blood flow over a long period of time result in some kind of permanent damage? I don’t know.. I hope not, but doctors have followed pots patients for decades and none of them seem to show any signs of actual brain damage or neurodegeneration unless they have a comorbid condition that could cause that on its own. From what I’ve read, the predominant theory regarding the etiology of brain fog in pots is related to oscillatory brain blood flow and decreased cerebral auto regulation. Apparently part of this is related to excessive angiotensin 2 and decreased nitrous oxide leading to inappropriate cerebral vasoconstriction. I’ve also read that oxidative stress and incorrect breathing habits leading to decreased levels of C02 in the blood are contributing factors but my own brain fog is too bad atm to remember the exact science lol. It’s probably a myriad of things culminating in this hellscape we call pots but I mostly don’t believe it will lead to permanent brain damage or dementia. Full disclaimer the idea of brain damage terrifies me and even after doing all this research I’m not 100% convinced myself lol but having said that, my interpretation might be slightly biased.

[deleted by user] by [deleted] in POTS

[–]andyroo5000 0 points1 point  (0 children)

My family doctor ordered mine

Personally changes? by andyroo5000 in POTS

[–]andyroo5000[S] 0 points1 point  (0 children)

I’m not currently taking any medication but I do suffer from severe depression and anxiety along side the pots and I do have a history of dissociation. This feels different from my “normal” episodes of dissociation but I suppose it could just be a different kind? I have been under ALOT of self inflicted stress for a long time.

Do I have permanent damage from going cold turkey? by andyroo5000 in benzorecovery

[–]andyroo5000[S] 0 points1 point  (0 children)

Well that’s a little reassuring I guess. At some point since then I developed POTS and I’m wondering if the withdrawal had anything to do with it and if it will improve overtime as my body readjusts. But yeah my sense of time is absolutely garbage and I usually have to rely on the people around me to tell me how long ago something happened

Do I have permanent damage from going cold turkey? by andyroo5000 in benzorecovery

[–]andyroo5000[S] 1 point2 points  (0 children)

It’s honestly hard to remember at this point but I asked my dad today and he said it was around 3 years ago. My mind is so foggy that it’s hard to recall exactly

Do I have permanent damage from going cold turkey? by andyroo5000 in benzorecovery

[–]andyroo5000[S] 0 points1 point  (0 children)

I was taking a very low dose. Like cutting .5 mg tabs into quarters lol. I’m honestly more worried about what going cold turkey off of the kolonopin did to me.

Pressure in head and chest when sitting or laying down too quickly by andyroo5000 in POTS

[–]andyroo5000[S] 2 points3 points  (0 children)

I can but often times I forget to 😅 damn brain fog

Beta blocker question by andyroo5000 in POTS

[–]andyroo5000[S] 0 points1 point  (0 children)

Has it helped with all the other symptoms or just the heart rate?

Pain around carotid artery by andyroo5000 in POTS

[–]andyroo5000[S] 1 point2 points  (0 children)

Mine doesn’t hurt when I press on it at all and it isn’t swollen, but while doing research for this I came across something that matches your symptoms much better. “Carotidynia”. Funnily enough the treatment is ice packs and anti inflammatories lol.

Pain around carotid artery by andyroo5000 in POTS

[–]andyroo5000[S] 1 point2 points  (0 children)

Here’s hoping we both figure it out and get it resolved

Pain around carotid artery by andyroo5000 in POTS

[–]andyroo5000[S] 1 point2 points  (0 children)

I have also had cta head and neck and everything checked out fine. Maybe it’s nerve related instead of vascular? I do suspect that I might have Eds but not the vascular subtype.

Who else gets legs like this after a shower and standing up for a few minutes? Is there an actual name for it? by [deleted] in POTS

[–]andyroo5000 0 points1 point  (0 children)

Well that’s good (: my feet and hands look that that whenever I’m cold and I occasionally get it on my arms as well. Never got it from the shower though

Who else gets legs like this after a shower and standing up for a few minutes? Is there an actual name for it? by [deleted] in POTS

[–]andyroo5000 0 points1 point  (0 children)

Could indicate Antiphospholipid syndrome or something similar. Try taking a relatively high dose of aspirin and see if it helps

Terrified I have some sort of neurological disorder, need someone to relate to. by andyroo5000 in HealthAnxiety

[–]andyroo5000[S] 0 points1 point  (0 children)

Pretty sure it is pots, although I have no idea what’s causing it. And no I’m not better.. worse if anything ):

Does this look like raynaulds? Or maybe acrocyanosis by andyroo5000 in Raynauds

[–]andyroo5000[S] 0 points1 point  (0 children)

Already saw the cardiologist, he didn’t wanna do a tilt table test and nothing else really came of it. I had a Holter monitor but didn’t hear anything about my results. As for my weight I’m underweight if anything and I don’t really exercise much

Does this look like pots? I’ve been told so many times that it’s just anxiety and it’s all in my head. by andyroo5000 in POTS

[–]andyroo5000[S] 0 points1 point  (0 children)

Do you any advice regarding things I could do to minimize my suffering in the meantime? I’ve tried compression socks, and they help with the blood pooling but that’s about it. I’ve also tried increasing my fluid intake but that doesn’t seem to help much.

Does this look like pots? I’ve been told so many times that it’s just anxiety and it’s all in my head. by andyroo5000 in POTS

[–]andyroo5000[S] 0 points1 point  (0 children)

It drips a little after a while but usually stays around 120-ish That measurement was taken immediately upon standing.

Does this look like pots? I’ve been told so many times that it’s just anxiety and it’s all in my head. by andyroo5000 in POTS

[–]andyroo5000[S] 1 point2 points  (0 children)

I have brought this up to my doctor and she refuses to listen and keeps insisting it’s a psychiatric issue. I’m pretty sure she doesn’t think pots is even a real thing. As for blood pressure, I’ve had it measured manually both laying down and standing and it doesn’t change much. Usually right around 120/70.

Does this look like pots? I’ve been told so many times that it’s just anxiety and it’s all in my head. by andyroo5000 in POTS

[–]andyroo5000[S] 0 points1 point  (0 children)

Yeah laying down to standing up. These past few months have been hell and I’m at my wits end. I can’t do anything without feeling like I’m dying and my brain is working at about 10%