RichGotsPots Posted August 6, 2012 Report Share Posted August 6, 2012 Just curious because I have both of these myself, which I think make me much harder to treat.. Quote Link to comment Share on other sites More sharing options...
issie Posted August 6, 2012 Report Share Posted August 6, 2012 Rich, I would have marked mito suspected - if it had been there. This will be an interesting poll. We're all so different.Issie Quote Link to comment Share on other sites More sharing options...
bellgirl Posted August 6, 2012 Report Share Posted August 6, 2012 Rich, I believe you are right....I agree with Issie, too...I would have marked mito suspected. I am on several mitochondrial supplements, so I can feel better without my doctors knowledge at present. Ones that are used for MS, since many of my symptoms mimic this disease, even though I supposedly don't have it. Never had a spinal to absolutely confirm, though,although blood work, and brain MRI were normal, except for deficiency in Vitamin D. I just read you can have spinal MS only. I will tell them when I go in September! Taking care of myself, the best that I can. So much more energy!! Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 6, 2012 Author Report Share Posted August 6, 2012 Looks like a good responses so far. I purposely didn't put mito, because I've heard so many people say they suspect it. I also don't feel it's related to BP issues as much as the other choices are... But if it was confirmed that I thought it would be interesting.. Quote Link to comment Share on other sites More sharing options...
McBlonde Posted August 7, 2012 Report Share Posted August 7, 2012 Rich.... This was hard to answer since I now have developed high BP (lying and stand) alternatively with hypotension (lying and stand)...... With both the hyper and the hypo I have big drops & raises of 40 to 50 points. I have no idea why this is now happening after all these years..... Quote Link to comment Share on other sites More sharing options...
peregrine Posted August 7, 2012 Report Share Posted August 7, 2012 Let's see here... I don't know my non-TTT BP values that well (don't have a monitor of my own, keep wondering if I should get one), but:I have both high and low BP when standing (agree on the treatment bit!). The low BP when standing seems to be (1) delayed (takes several minutes to occur) and (2) due to pooling (which also takes several minutes to occur).I definitely pool - when I stand without my stockings my feet turn red, itch, and the veins pop out.I have joint hypermobility syndrome (I put EDS - suspected - because while it's not as severe as EDS hypermobile type, it's related depending on who you ask), neuropathy (based on QSART), and probable hyperadrenergic POTS (no norepinephrine bloodwork yet). Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 7, 2012 Report Share Posted August 7, 2012 This was a bit tricky because I tend toward hypotensive. When I stand I get a sudden drop and subsequent rebound hypertension with the rush of ne. The longer I stood on ttt, the higher the bp got, until the blood pooled too much and then I have delayed hypotension. If/when I faint, it's usually after standing for longer than 15 or 20 minutes. I had a longer than normal ttt run because of this weird mish mash of symptoms, and they showed up in that order. I'm glad the doctor caught onto this because at the standard 10 mins I just looked hyper, but they kept me standing long enough to see the whole cycle. Quote Link to comment Share on other sites More sharing options...
corina Posted August 7, 2012 Report Share Posted August 7, 2012 I couldn't do this poll for several reasons. I'm pooling standing still which recovers on walking (at least in my legs), also I am hypo but can have delayed hypotension as well (where bp lowers even more). I don't know which subset I might have, EDS, Autoimmune and Allergies run in my family. I've been sick all my life and react strongly to general anesthetics. Quote Link to comment Share on other sites More sharing options...
Relax86 Posted August 7, 2012 Report Share Posted August 7, 2012 I think I'm the only nerd that doesn't know if she's pooling. My newest symptom is right hand much greater than left veins that pop out and are very blue. They itch and burn a little and make my hand feel numb. Happens mostly at night when I get in bed to relax. Not sure if that's pooling. Keep googling pic's of pooling and can't really find pic's that look like me. I do know that at times I feel like there's not enough blood in my brain and if you look at my right hand it seems to be there. Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 7, 2012 Report Share Posted August 7, 2012 Relax I am on another forum and the ladies on there take pics of their hands when they are down and it sounds like your symptoms match theirs. When they raise the hand up the veins smooth out. They attribute this to pooling. Not sure that's helpful but it's all I've got. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 9, 2012 Author Report Share Posted August 9, 2012 Rich.... This was hard to answer since I now have developed high BP (lying and stand) alternatively with hypotension (lying and stand)...... With both the hyper and the hypo I have big drops & raises of 40 to 50 points. I have no idea why this is now happening after all these years.....Are you sure it isn't from the medicines you are on? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 9, 2012 Author Report Share Posted August 9, 2012 This was a bit tricky because I tend toward hypotensive. When I stand I get a sudden drop and subsequent rebound hypertension with the rush of ne. The longer I stood on ttt, the higher the bp got, until the blood pooled too much and then I have delayed hypotension. If/when I faint, it's usually after standing for longer than 15 or 20 minutes. I had a longer than normal ttt run because of this weird mish mash of symptoms, and they showed up in that order. I'm glad the doctor caught onto this because at the standard 10 mins I just looked hyper, but they kept me standing long enough to see the whole cycle.So that sounds exactly like mine. What meds did they prescribe? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted August 9, 2012 Author Report Share Posted August 9, 2012 I couldn't do this poll for several reasons. I'm pooling standing still which recovers on walking (at least in my legs), also I am hypo but can have delayed hypotension as well (where bp lowers even more). I don't know which subset I might have, EDS, Autoimmune and Allergies run in my family. I've been sick all my life and react strongly to general anesthetics.Corina- based on what you said I would answer Yes to blood pooling, because the question doesn't ask how you blood pool or when. As far as hypo and delayed hypo, you can check both of those answers... And for subsets you can either say you suspect for have none of the above... Quote Link to comment Share on other sites More sharing options...
NMPotsie Posted August 9, 2012 Report Share Posted August 9, 2012 Rich I was given propranolol and xanax to inhibit the high bp spikes, which were much more disabling than the low. Then I was put on 10g salt and 3L fluids to build the blood volume so that I don't become hypo. My sodium was like 37 and I am hypovolemic so building blood volume keeps bp up, while propranolol levels it out so I don't get surges. If I take the bb without the salt, I am a disaster. I take 10 mg 3 TID and prn with surges. I'm supposed to take the xanax in the a.m. and p.m., but I try to avoid it in the a.m. because it makes me soooo sleepy. Quote Link to comment Share on other sites More sharing options...
Birdlady Posted August 9, 2012 Report Share Posted August 9, 2012 Rich,Generally my BP is always normal. I consider normal 105/75-120/80. My BP will go up a few points when I first stand up, but then it will level out to normal very quickly. On my 1st TTT, I did reach 140/80, but I was also on florinef, DDAVP and a saline IV. On my 2nd TTT, I reached 127/85 and then bounced up and down from there... In my normal every day life though, I have never seen my BP higher than 125/80, but then again I am not taking it by hand very often. I question the accuracy of my automatic BP monitor because I've dropped it a few times...lolAs for the delayed hypotension, this happened to me at around the 40 minute mark on my 2nd TTT. I have never fainted from POTS though. If I was forced to stand for hours in a single spot, it probably would eventually happen but as long as I keep walking or moving, my BP is generally normal yet I have very high HR's. 160+ is normal if I am trying to actually do some work around the house.Hope this info helps. Quote Link to comment Share on other sites More sharing options...
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