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Told I Have Neuropathic Hyperpots, Propranolol/mcas Q?


Clairefmartin

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Hi everyone, haven't been on much - have been blogging like crazy and traveling around FINALLY getting testing, and just started some treatment. Some of you know I have been getting the run around since having mhy daughter a year ago, and have been mostly bed and home bound. I started IV fluids a few weeks ago, its been great.

I was officially diagnosed with HyperPOTS based on my ANS testing, but have mild neuropathy of unknown origin. I have to get more biopsies next week for Sjogrens and Amayloid, and be worked up for Metabolic Syndrome (my ALP and Triglycerides are high). They also are going to do a serum catecholemine draw to check the hyperPOTS thing, because my BP bottoms out half the time, and spikes the other half. Actually its probably not half and half - but it definitely drops sometimes. I am seeing an MCAD doc next week as well, as that is still highly suspect as well, especially after the hyperPOTS results, and have a medicine question.

I was given Propranolol, and I'm really nervous about taking it. I did take Toprol XL as recently as 2011 with no allergic reaction to it, it just tanked my BP so it was discontinued. I'm worried about both anaphylaxis issues and the BP issues. Has anyone with MCA issues had a reaction to this BB? And for anyone that may have taken it that has BP that tends to be low (and my resting HR runs usually in the 70-80 range laying down), has this affected you in any way or helped?

Oh - and I supposedly have "Chronic paroxysmal hemicrania (CPH)" causing my issues with my right side of my face. Its an autonomic headache dx I had no clue existed. http://emedicine.medscape.com/article/1142296-overview#a0101

Thanks! I have such medicine phobias! I'm supposed to try it tomorrow, but don't want to of course.

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Hi Claire. Glad you've gotten another piece of the puzzle. I've wanted to try Propanolol too, but have been nervous about BP and other reactions as well. Several here have said it helps them with no ill effects - maybe it's worth a try. Curious about the "mild neuropathy" - how did they determine this? Did you have your skin biopsy - if so, what were the results? I feel like there's more to uncover with you - glad they're doing further testing.

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Thanks Naomi! My QSART showed neuropathy, but my SFN biospy came back normal. I'm guessing I have patchy neuropathy, and actually there are 2 SFN tests, and he only tested for sensory, not autonomic, which I though was weird. Each lab is different, I have thought about requesting my slides be sent to another one (that I have heard is more reputable). My slides didn't show vasculitis or amyloid, but he still wants a chunk taken out of my stomach next week (again, weird).

Hope you are well!

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Hi, Claire,

I was handed a script for propanolol after my tilt two weeks ago. I have been told, for over 15 years, by most docs I've seen, that since I go anaphylactic and have had to use epi, I cannot take a beta blocker. It would block the epi that would be used in attempting to save my life should I go anaphylactic while on it.

I know you have mast cell issues. Are you ever in the position of needing epi? If so, I would really hesitate using the BB. I had an ER doctor tell me one time that he had a patient come in with either a nut or bee reaction, in anaphylaxis to the point his throat was shut (that's what I do), and they couldn't save him because his BB blocked their epi.

I have always been treated with calcium channel blockers. My endo, a few days ago, with all I'm going through with my steroids and the clonidine patch, said the usual treatment for what I'm going through with my excited beta system is, of course, a beta blocker, but knew I have the anaphylaxis issue and couldn't go that route with me.

I understand your concerns about trying new meds. I'm the Queen of New Med Fear. Just wanted to mention this little snag, to be sure you're aware and you don't have anaphylaxis issues that could conflict with the use of a beta blocker.

Take care.

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Thats what I'm worried about - I have mild anaphylaxis - throat gets very tights and swells a bit (plus itchy/tingly stuff) but have never closed. BUT STILL! I think I will wait until I see the MCAD guy next week and my nephrologist (who is also a pharmacologist!), and ask both. I've waited this long, another few days wont hurt!

Thanks for the feedback and info LInda!

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No problem, Claire. With my history of anaphylaxis (my throat has gone totally closed once, with nuts, and close to it many, many times), I worry when someone is put on a beta blocker with a mast cell history.

Yes, I think it would be wise to check with your mast cell doctor.

You take care. Good talking with you.

Linda

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Hi Claire,

Beta blockers are known mast cell degranulators, which mean they trigger the mast cell to release histamine, and sets up the anaphylactic cascade. In addition to diminishing the effect of epi during an anphylactic reaction, beta blockers alter the body's inate ability keep anaphylactic reactions from going to the next phase. In your case, I fear it would be risky to take a betablocker.

I have a history of anaphylaxis, long before being diagnosed with autonomic neuropathy, OH and MCAS. Soon after my TTT, I was prescribed zabeta. I started with 1/4 of a pill and by the 4th day (and only one pill) my resting tachycardia presented with a constant HR in the 40s. I lived this way for 6 weeks until it crawled up on its own. He then opted for a calcium channel blocker, but then I couldn't tolerate verapamil. My neurologist told me to never allow anyone to prescribe a betablocker ever again, but we didn't exactly know why I reacted this way, until I got the MCAS diagnosis. The verapamil contained yellow dye, another degranulator, and major trigger of my anaphylaxis.

Best wishes, Lyn

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Eurgh...meds are sure scary. I'm on Propranolol, but haven't got the problems that you have. It did stop the flushing up and feeling like I was going to explode.

PS Having read a lot of the symptoms you are all displaying, I can see many similarities with mine. I put it all down to the changes in nervous and vascular systems. Will effect the whole body.

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