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  • 2 weeks later...

Hi there,

It's been suggested to me that I have baroreflex failure.

My notes from my specialist also say I have "autonomic dysreflexia" which is somewhat similar, but common in people with spinal injuries (which I don't have).

It really is quiet a mystery.

I have read that for baroreflex failure, the main aim is to calm the over-active sympathetic response which helps stabilise the baroreflexes.

 

 

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  • MomtoGiuliana changed the title to Baroreflex failure?
  • 3 weeks later...

Sorry this just show up . Thank I for reading my post . I have what think hyper pots mast cell activation syndrome I also have seizures mainly on night time . Only spinal op I had was awake caseran in 2012 all my probloms started after that just seem be getting worse. We started clonidine to help honestly wish I had time machine never took it i am now trying to stop it as made me alot more unwell but u cant just stop it I found out so have to stop by half tablet three time day then slowly wean it out horrible .

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I don’t have baroreflex failure but my symptoms seem to correlate with being somewhere on a spectrum of it. I have supine hypertension, orthostatic hypotension and any “stress” good or bad, something as simple as a phone call, sets my BP soaring in spite of being on guanfacine (alpha blocker) and diagnosed with hyper POTS. Clonidine made the hypertension much worse due to the known side effect of rebound hypertension. I posted on your other post about weaning from it. If I have a very quiet day the orthostatic hypotension is worse (40-50 points systolic) with attendant symptoms, dizziness, tremulous, palpitations, hot flashes, shakey, have to sit down this second etc.
 

There are other alpha blockers for hyper POTS including methyldopa (I quite liked that but they aren’t producing it in the US so you have to get it from Canada) and guanfacine (the ER formula causes almost no fatigue but immediate release does according to the clinical pharmacist I consult). My problem is getting the meds right. I have found by accident that a tiny dose of alprazolam (1/4 tablet) before a stressful activity keeps my BP around 140/80 sitting whereas extra beta blockers didn’t lower it as much. The problem is that I don’t always know when a stressful event will occur and you have to be very aware of the potential for addiction.

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