Curious To Hear From Anyone With Pots After Brain Trauma

[dpeeps]

I had a spontaneous brain hemmorrhage (SAH) and strokes in both Hemispheres in July, 2010. There were some neuro issues immediately following, but resolved within 1 month. I was very lucky since many folks die on the spot.

My first moderate - severe POTs symptoms appeared about 8 months later with pre-syncope and veinous pooling. Symptoms progressed from there, but slowly and nothing really stood out until a major flare in March of 2012. Several trips to the ER and lots of tests over the next two months revealed nothing until I saw the Cardio who quickly suspected POTs and confirmed with TTT.

The cardio is suspicious that the SAH I suffered was the cause of the POTS, though no one can be sure. I recall when I was in the hospital recovering from the hemmorhage, the physical therapist said, "Whatever (conditions) you had before, may become intensified after this trauma". I recognize that many, if not most of the POTS symptoms, I have had all my life, or at least since puberty, but they were never severe enough for me to seek treatment, nor did I realize they could somehow all be connected as one illness/syndrome, etc.

I am just wondering if anyone out there suspects that their POTs is due to brain trauma and whether or not they had "POTS-Mild" before the trauma

Am I the only one?

[issie]

I've had POTS most of my life. (I think mine was triggered by a vaccine when I was around 8 years old.) But, when I finally got my DX in later life was after what they thought was a TIA. At that time they found a brain meningioma in my left frontal lobe. At this point they continue to watch it because it is growing. I had another TIA a few years after that. So, thinking there may be a connection - but why or how - not sure. My doc said that he thinks if I have a stroke, it will be a bleed. Not sure I really wanted to know that - but, that's what he told me. I have some enlarged and ballooned out vessels around my brain stem area - in the pons.

So sorry, that you've had those things happen. Not sure if that's what caused it but, it could be connected. Glad you survived. You are very fortunate. Did you have a lot of rehab?

My father has had 3 pretty major strokes. He survived them all and did have to have intense rehab. He can walk and talk now. Scares me, because you wonder how deep a part genetics plays into things.

Issie

[dpeeps]

Issie - thank you for responding

I am sorry to hear about your issues as well. POTS is life altering, but when you add the layer of "my brain can spontaneously bleed at any time and potentially kill me on the spot", it is really hard to deal at times. Talk about anxiety!!

To answer your question, no my rehab was not bad at all except for excrutiating daily headaches for about a month following. The neuro issues were "word finding" or saying a random word in a sentence where the word made no sense. The other one was an extreme sensitivity to sound. Friends and family engaging in normal conversation sounded like they were yelling. I could not watch TV at all. The lowest setting was too loud for me. Also, peoples voices sounded different - like an octive higher. Weird!!

I had migraines before the SAH and still do, but I can tell you that a SAH feels different than a migraine in that it comes on like a freight train. I felt perfectly normal (no hint of any head or neck pain) and then with in about a 20 second time frame I was nearly collapsing from the pain. If it happens, you will know it and don't delay - call 911.

I don't mean to scare anyone. I personally don't believe POTS caused the SAH. I do believe the SAH made POTS worse. I was taking birth control at the time of the bleed and that is risky for someone my age (35+). They could not find any AVM or Anneurysm, so no definitive diagnosis on what caused it. My grandparents all lived to be at least 70+, with no strokes or brain hemmorrages. Who knows?

There is a website (forum support) for SAH sufferers called "behind the gray". Most of the folks have lingering symptoms which overlap with POTS such as exercise intolerance, fatigue, chronic headaches, brain fog/forgetfullness, nausea, dizziness, lack of concentration, etc.

It sounds like they are monitoring you carefully so that you do not go through this, which is good. One of the things the neuro told me post-SAH was to "stay hydrated!!!" (hehe as if I had a choice with POTS)