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Symptoms Apparently Stemming From Hypoxia/hypoperfusion?


Elfie
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My most debilitiating symptoms all seem to be related to lack of blood flow/oxygen to my brain.

I have tachycardia, which is fairly under control with a b.b. and low bp, that is usually undercontrol with midodrene. I also seem to be having NCS episodes, or just periods of time where my bp drops (but not immediately after standing) and my hr no longer can/will raise enough to compensate (sometimes I get indicators to prevent a faint and will sit to do so, but on occasion I've gone down without signifcant warning as "feeling crummy" and "feeling crummy and going to faint" aren't seperate enough).

Because I am not fainting much or running a hr of 150-200 bpm all the time I consider myself pretty "able."

However, I am still having huge issues with cognitive type stuff upon standing (even when my bp is "ok"). I physically can stand/walk for a long time without passing out when I use countermaneuvers, but even after a short period of standing or walking I start having "brain issues."

I'm having problems with dizziness, balance (swaying, walking like drunk, spacial perceptions), thinking, talking (finding the words, cognition of what has been said to me or what I read, slurring words, stuttering, being able to express myself), memory (things like my name or birthday, memorizing new things, putting the orange juice in the shower and the body wash in the fridge, remembering where I am or which direction I need to go to get to somewhere else), fine motor skills (chopping, using a stove, signing my name, getting a key into a doorhandle, shaking), controlling my emotions or what I say, ect. These are all fairly significant anytime I am on my feet for more than a couple of minutes. Once I'm experiencing the symptoms, it can take between 20 minutes and several hours for them to subside-- and I tend not to be as clear mentally even after the worst symptoms subside as I was prior to standing.

At this point I'm not sure how to proceed in encouraging my doctor to treat these symptoms--

However, I do know that they are making me miserable and keeping me from doing things that there doesn't seem to be a physical reason that I couldn't be doing.

How do you treat these type of things?

Are there other accomodations or coping mechanisms I could be using?

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sorry i have no idea what to do about it... i have the exact same problem my perception is off i run into things scared to drive when i feel like this. i also have trouble with slurring words or getting the right word to come out.. i cant remember things i have done/said sometimes... and sometimes when driving i cant remember how to get where i am going even though i have driven there a million times. its horrible i feel so stupid and just cry. I dont know why this happens but its horrible and hard to deal with. sorry if this doesnt make sense im really not feeling well right now... but sorry i cant help.

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My son was having significant problems, classmate asked him to boil water for macaroni in cooking class and he had no idea what to do, said they were like speaking a different language, same with all other classes, couldn't understand anything, became very depressed as a result. Bev Karabin recommended an adhd type med and the brain fog issues are gone, at least during the day. It has been a life saver. He is on an XR long release med so it does last until middle of the evening. Only trouble for him is appetite supression but that was an issue b4 and this med is essential to his well being. Can you ask about this? These meds are listed on a paper by Dr. Grubb in an issue of Circulation. You could google it.

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