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Poll On Medications And Therapies


Poll on medication and therapies  

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Sorry Rama - here's another two - Diltizem a calcium channel blocker and Ivabradine. The first eased my symptoms initially and then made them worse until i had a severe reaction. The Ivabradine which i know is not available in US gave me worse chest pain. Would be interested to see how others got on with it.

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Florinef the all time worse for me....migraines landed me in the hospital for 10 days!

The best....it depends on the tweaks.....the usual midodrine at first. When really bad flares, Octreotide. At worse flare, Octreotide gave me my life back.

Interesting note....doctors at Mayo refused to administer Epogen because of its potential for stroke and heart attack risk. They don't even use it for those undergoing chemotherapy except as last resort. When I was undergoing chemo, Epogen was routinely given. I was using Epogen at May Jax for about a year for POTS until the Oncologist put his foot down. I then switched back to Octreotide. I used to take Octreotide when I lived in Maryland but stopped when I developed gall bladder problems from it. With no gall bladder, no problem using Octreotide. Once I restarted Octreotide, my friends could tell that I looked better and felt better.

As far as beta blockers, Labetalol seems to work the best for me. Not many seem to use it here.

I have dug myself out of a gigantic POT hole that started in October.

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oral salt and fluid loading, and oral electrolyte fluid treatments are not on your list and these are the things that have helped me most.

as my blood pressure and heartrate are so variable i cannot take any medications for my PoTS so i drink 3-4 liters of water (this includes my 1litre of electrolye solution) and eat tons of salt. and i am only able to exercise sat down so i exercise while in my wheelchair. i cannot tolerate exercise while i am stood and faint within a few minutes.


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  • 2 weeks later...

Another medication that Mayo uses is Guanfacine to help labile blood pressures, orthostatic intolerance type 'stuff'

Also called Tenex for kids with attention disorders... it drops their pressures as a side effect... It's for hypertension as well - and has psychiatric uses like for generalized anxiety disorder, some tics, PTSD etc...

For me it was a terrible weight-gainer so I had to stop it.

I am doing really well on Propranolol....and Clonidine - but I do not have POTs really - OI and pooling - Dysautonomia like 'issues' but not POTs thus far. Definitely chronically fatigued - definitely chronic pain -- but I'm a hypermobile person with EDS too. SFN, borderline diabetic.

I didn't do the poll cuz I don't have POTS

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  • 4 weeks later...

Also interesting observation that many have not tried some medical interventions. betas seem to pick up the most negative effects. I wonder - what were those negatives? Hypotension or worse??

Rama, you make a great point "what were those negatives?" This poll was great and informative, wish we could take it a few steps further. For example, polling all the individual beta blockers that were taken and what the immediate vs. long-term affects were. Of course I could look up each on and their use and side effects but I think seeing it here would be more useful for me. I feel like POTS people may be more sensitive then the general population to certain meds (Parasympatholytic" and sympathomimetic agents, that affect the ANS) and I'd also like to hear about a side effect that a POTS sensitive person has then a regular person had.... 1 step further and I hope for a day when we can all get definitive sub DXs of POTS and get a list for our particular sub-class...

For me personally it's nerve-raking knowing that the top 3 treatments that helped were also among the least tolerable. For example

goldicedance ended up in the hospital for 10 days after Florinef is pretty worrisome. I've heard similar stories from people on here with other meds.

I took a Poll on here about what doctors help the most with treatment and it's clear people are seeing many different types of doctors not just dysautonomia specialist. Are all these doctors really poring through the POTS studies to come up with the best treatments or are they just piecing together treatments based on symptoms? So many questions I have are unanswered and I think your poll highlights that..

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