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POTSmom2

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About POTSmom2

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  1. My son who has hyper POTS (and likely MCAS) started Gastrocrom today. We have a million questions - if anyone has tried either/both please chime in 1. which did you take and how long did it take to know it was working? 2. did you have any bad side effects - what were they - how soon do they show up? 3. did either/both help - and if so, what symptoms did they relieve? 4. did you try quercetin as well - did you get a different response than with Gastrocrom and cromolyn? And one piece of information: our MCAS dr believes that for many who cant tolerate the generic of Gastrocrom, they can do well on the brand name (which is sadly very pricey) - in general, he is not picky about the generic vs brand name - but in this case, he seems to think it matters Thanks all!
  2. I've read a bunch of recent literature talking about patients with CSF leaks who were misdiagnosed as having POTS. For 2 articles, see https://spinalcsfleak.org/pots-spinalcsfleak-or-both/ and http://www.painmed.org/2016posters/abstract-112/ Has anyone out there with CSF been misdiagnosed with POTS? What advice do you have for the rest of us?
  3. My hyperadrenergic POTS son is slowly getting his issues under a little bit of control with pepcid and propranalol (plus POTS diet/exercise). But he still cant really leave the house because he is uncomfortable in rooms above 62 degrees and really cant sit upright for any length of time. Does anyone have any great ideas on how to tolerate a warmer room? And meds that are working for that specifically? Or strategies for sitting at a table a restaurant or going to a meeting? At home, he is fine in a recliner chair (with legs up) but to have the ability to really engage outside the house we have to figure out a way for him to be upright. Sitting in a wheelchair would not work - he would only feel worse. Ideas for navigating how to sit at a restaurant or in a meeting for those who cant sit upright? General advice for ways to sit outside the house with legs down vs up? Or things that help control when you are forced to sit with legs down?
  4. we were told that if its not genetic - it likely due to a mast cell activation disorder issue...
  5. Has anyone with hyperadrenergic POTS seen Dr Lawrence Afrin for related mast cell issues? If so, was he helpful? We are told he is one of the few drs who understands hyperadrenergic POTS coupled with mast cell activation disorder (MCAD). Has anyone seen other drs on the east coast with both MCAD and hyperadrenergic POTS expereince? Or is it just Afrin?
  6. My son has hyperadrenergic POTS. Our terrific dr (Blair Grubb in OH) has explained this acts very different from "other POTS" which 90% of POTS sufferers have. Has anyone found a dr in the NYC tristate area who understands hyperadrenergic POTS? We are told the recovery rate is extremely low for those with hyperadrenergic POTS. Does anyone have a good recovery story to share who has suffered with hyperadrenergic POTS - with the ability to have a job and/or go to school? If so, what drugs/therapies have you used? For hyperadrenergic POTS, just following the salt/liquid/exercise regime is not enough.
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