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This reminds me of something I THINK I saw your post, but my memory is ...well, you know... I started as a child with NCS which progressed many years later to POTS. Have you seen that before in your research? Thanks!

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Couldn't really answer the third one for you. # 1 would be © I guess but I've always had it and #2 is very confusing, or will sound tat way. Always have it as far as I know but flares have been both. No continuity... Sometimes they are so severe I'm hospitalized day I after the flare began but leave w/o an answer and other times, like this one, has taken months to fugure it out like they fortunately did at Mayo. Just been tricky treat.

Jen

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So for #1 I choose waxing/waning, but I also think it's slowly improving. It still waxes and wanes but I feel that my lows are quite as low and don't last for as long. I am much more consistently functional than I was two years ago. The third question...there are times I feel a full head when leaning forward, but it's not consistent...so I'm thinking maybe it's congestions vs blood? Anyway...that's all...

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Number 2 was a tricky one. I had years of unexplained symptoms, then overnight the tachycardia/adrenaline stuff started. I think it's all related, but who knows. I chose gradual and progressing, although the characteristic "POTS" symptoms hit me suddenly. I'm surprised how many of you have remissions/relapses. I thought most of us were pretty much always sick.

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Mine was gradual at the start and then sudden crash over the span of almost 5 years now. It does wax and wane but I would never say I am in remission because I never feel normal compared to what I had before this illness.....it is progressing as I am no longer just pooling in my legs but now in my arms and stomach, have mast cell issues and just recently was told it looks like I now have periphereal neuropathy at play....... like you Naomi I always feel sick in some way :(

Bren

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Rama-- why are you thinking the head full of blood is significant? I've had this for awhile where I'm uncomfortable being upside down etc.. My rad feels like its going to burst or my eye balls will pop out of my head lol... I guess it's not normal lol

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Its not normal. :)

Are you thinking about Dr. Driscoll's theory?

Anna, posted a thread on this awhile back, with the full head feeling with bending over. It seems most of us with EDS have this reaction. That would make Dr. Driscolls theory make sense. Wouldn't it?

Issie

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So I have this, but I don't have any reason to believe that I have EDS. I have heard about Driscoll reflux in the eye etc.. But I'm not sure to what extent blood pooling in the head is abnormal

Since, we as human are bipedal and the mechanisms for countering gravity are when bloo is concerned is in our legs etc not necessarily pit heads since we're not suppose to be upside

Down, know what I mean? Interesting stuff

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Its not normal. :)

Are you thinking about Dr. Driscoll's theory?

Anna, posted a thread on this awhile back, with the full head feeling with bending over. It seems most of us with EDS have this reaction. That would make Dr. Driscolls theory make sense. Wouldn't it?

Issie

can you link some info on this?

i get this sensation even when i stand up. weird because it's supposed to be empty of blood, but i feel lots of pressure in my head when i stand up. i just don't understand these things.

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Its not normal. :)

Are you thinking about Dr. Driscoll's theory?

Anna, posted a thread on this awhile back, with the full head feeling with bending over. It seems most of us with EDS have this reaction. That would make Dr. Driscolls theory make sense. Wouldn't it?

Issie

No I am not. Not everyone with POTs has EDS for a start.

My interest is purely with either regional peripheral neuropathies limited to the head, thorax and perhaps stomach. Or alternatively increased vasodilatory peptides in the cerebral circulation - interesting given that migraine is much more prominent in OI patients and that around a 1/3 of migraine sufferers could fulfil the criteria for CFS.

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I feel like the head pressure indicates a more systemic vasoconstriction problem rather than simply poor vasoconstriction in the abdomen or legs. When we bend over, blood starts pooling in our heads, which means to me that the veins in the head also aren't constricting or returning blood properly. We are like sand timers!!!

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I feel like the head pressure indicates a more systemic vasoconstriction problem rather than simply poor vasoconstriction in the abdomen or legs. When we bend over, blood starts pooling in our heads, which means to me that the veins in the head also aren't constricting or returning blood properly. We are like sand timers!!!

It is odd. Not all POTsies get this though. I dont pretend to know what it means but the outer venous system of the head isnt part of the CNS so it may not be related to cerebral autoregulation.

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Interesting that you talk about regional neuropathy in the head, thorax, and stomach. My head feels too full of blood when I bend over which I chalked up to being too used to it having no blood. But, my new exercise videos I've been using have lots of stretching involved in a standing position and then bending over. When I do it, I get the full feeling in my head, but, I also get an overly full feeling in my thorax...almost like I'm drowning and it becomes hard to breathe. It really feels like I am suddenly getting more blood in my heart and lungs than I can process.

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  • 8 months later...

How about a "other" for the third question. It hurts my head (bad), but I wouldn't say it feels like it is full of blood. I just always guessed that it has to do with BP fluctuations in response to posture changes.

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  • 3 weeks later...
  • 4 weeks later...

I chose acute and spontaneous onset, but looking back I've always had many of the symptoms (since puberty). My first real flare was 13 months ago and it was severe, sudden and debilitating. I only realized later that most of the POTs symptoms I had in a milder form for most of my life. I didn't know anything about POTs and did not know that all the weird stuff I experienced was all part of the same medical condition.

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Ditto Rich! I was just thinking about ways we could improvise and wonder if the O2 monitors they use in NICU could be adapted for us to look at some degree of O2 levels in the head. (Even if we could it really wouldn't be quite the same as what you are thinking but may give a different measure than our peripheral O2 which would be clinical evidence to dig deeper.)

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  • 2 months later...

My symps came on over just a few days as I was coming down with a bad flu. They were at their worst (touch wood) during and, to a lesser extent, for the month or so after the fever. Since then it's been a little better thanks to increased salt and a lot of water i think, but I have had some bad days and scary episodes. Can't say I've had huge improvement for the last few months though, possibly because I haven't been diagnosed yet and am too afraid to exercise.

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