brethor9

I am dealing with this alot right now too....it had settled down a bit for awhile and now its back worse than ever no change in meds or anything

I can't exercise much at all....gets me more wound up and symptomatic....but I was also diagnosed with exercise induced urticaria.....goes to show how completely unique we all are

Hi Alex

My specialist thinks its definately because I have high levels/ high sensitivity of adrenaline (I also have high cortisol) in my system all the time and my receptors are not functioning properly to get rid of it. I was diagnosed with high levels on baseline (lying down) and standing during my tilt test. Although I know if I am awoken suddenly that sends my system completely overboard into an episode..... but bad dreams dont help the situation thats for sure

yep me too....definately adrenaline surges.....sad to say but now I am used to them...they happen so often........not a BP thing for me I have high levels of catecholamines so I am sure thats what sets them off

I have major flares every couple weeks and end up bedridden for a few days.....although I am never without symptoms on any given day.......just some days are better than others......

yes I take meds every day for suspected mast cell issues........I also wear contacts and it gets so bad at times they are literally sticking to my eye.....I have just recently started using my neti pot just rinsing with a bit of warm water and has helped a little. I think it wouldnt be so bad if we weren't already chronically dehydrated

yes I do also very badly! I have yet to figure out a way to combat it though. For me its kinda a catch 22...either suffer from the dryness or from the overwhelming allergy symptoms.....you just can't win

not sure about that as I have been having nerve issues off and on for years even before POTS onset.....I have always had poor circulation (2 pound preemie at birth)...as a young child I was diagnosed with Raynauds...... so I am more apt to believe that over the years this chronic poor circulation has some how played a part in my illness

yeah I hear you on that one Issie a remission for me is a couple of hours but honestly I am never symptom free

Bren

They didn't say anything about age either; it is known that younger patients diagnosed with POTS fare better then patients who are older and have a more gradual onset. Also my autonomic dysfunction and orthostatic intolerance are far more severe than my POTS. Are these patients just diagnosed with POTS or any secondary issues? its very vague......

Puppylove that is a great saying!!! would be perfect for a t-shirt lol! I will have to start using that one

the article states hypotension so I am thinking it may not work for us hypers......if its more of a stimulant it definately wont work for me......

my bladder/bowels have never worked the same since I got POTS.....I have the same problem some days if my system is ramped up and I dont go as soon as I get the urge.....I used to be a ward clerk and could hold for like 8 hrs now I have to go right away or I am almost crying from the sense of urgency and not to mention the lightheadedness and tachy........guess its just my stupid out of whack ANS

Bren

a saying I had seen on a t-shirt for chronic illness said; but you dont look sick! .......and you dont look ignorant either! thought that was pretty clever another one was ; my chronic illness may be invisible....... but i'm NOT!

oddly enough I also had a filling done this week and have been in bed since I know the tools like the grinder etc were really causing my head to vibrate so bad I felt like I would throw up......I think for whatever reason that and having my head at such an odd angle for so long set off a flare for me..... my tachy, lightheadedness, balance have been really bad and I have had 2 mild grey outs over the last couple days. i was fine before the procedure....I am just trying to hunker through it

what a great idea!

so I just rewatched that interview and this is the last year of the touring....she said 3 of the wiggles are retiring except for the blue one? so technically he is only touring with them for a year... a farewell tour..if he is healed why retire?.......I am like you Ginger I wonder if he is completely healed?.....although if you only have OI and not POTS and not autonomic dysfunction then maybe you can heal?......who knows .......

not yet but thats the next stop on my roller coaster ride I am waiting to hear about going to Cleveland.....I live in Canada and they dont have the same type of specialized testing here so I have to be shipped out thanks Naomi! I really knew that since the topic kept coming up with my nurses it had to be an abnormality of some sort? my feet are so shiny they look almost translucent

interesting.....my son is autistic but thankfully no sign of POTS or anything......

Bren

Naomi...that is a complaint I have been hearing from my nurses....that my skin is abnormally shiny and dry especially my hands, arms, feet and legs.....is that a sign of neuropathy? my docs already suspect I have this because of the burning and sensation issues but I am just curious what your input is?

Bren

yeah I hear you....we are going through a rough patch with our little guy right now too....the joy of autism.....sigh vasoconstriction is when your blood vessels tighten / vasodilation is the opposite...your vessels are relaxing and not constricting enough to hold the blood and keep it from pooling.....hypovolemia is that your body is low on blood volume....my dr explained it that my body for whatever reason does not produce enough blood to adequately service all of the branches of blood vessels throughout my system.....does that all make sense? I think some Potsies get more constriction and some get more dilation......or like me have both issues in different areas...like dilation in legs but constriction in upper torso....its so whacky isnt it? But the basic idea is that if we can treat the low blood volume it may help with the other issues......in my case it hasnt made a difference

Hey Lou lol! Still Hot over here..blah!! but I am doing as best as I can....you know how it goes everything ok with your little one too? yeah the blood pooling is not pretty and I know what you mean about the measle spots.....I get the big white spots on top of the purple that make my legs look like the outside of some alien egg or something lol! maybe we should do a picture gallery of everyone's legs changing colours atleast you know you aren't the only freak of nature here........

Bren

ouch! poor tinks! have you tried any pain meds? perhaps you have some inflammation in that area that could be causing nerve irritation? Also I was told that skin biopsy for neuropathy can sometimes be hit and miss if they dont catch the right area.........

Tinks: yeah I had the same symptoms....just started out in small areas at first....my toes started burning especially at night (like sunburn or fire ants) now I have patches behind my thighs.....even just a light brush of anything and I am gritting my teeth in pain....both my specialists say peripheral neuropathy.....not much in the way of treatment of course waiting to go to Cleveland to see if they are of any help

Katybug hang in there! I feel your pain I will keep you posted if I stumble on anything....wondering if the IVIG may help you since you already have an autoimmune component? they have used it off label for CFS and neuropathy with promising results

Hi Tinks!!

Hope you are doing well!......yes I would say that is definately blood pooling or mottling as the dr's like to call it that is very much what my legs look like....mine can get so bad they go deep purple from thighs to toes....not very attractive is it hugs

Bren