ramakentesh Posted February 6, 2012 Report Share Posted February 6, 2012 Hi - I havent seen a poll like this for a while so I thought Id pop one up.Just a basic question about medications - which one ultimately has been the most helpful and which was the one you were least able to tolerate Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 6, 2012 Report Share Posted February 6, 2012 So glad you posted this! I've wanted to do this poll, but didn't know all the possible medications to list. I can't vote because none of the things I've tried have noticably helped. Should be interesting to see if there's a stand out. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 6, 2012 Author Report Share Posted February 6, 2012 I think this has been done before but fairly limited ways. I thought I would try again just to see what gets the votes most often. It might help people work out what meds are more popular to discuss with doc, etc.I voted and made a mistake and didnt vote for licorice. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 6, 2012 Report Share Posted February 6, 2012 My most helpful meds so far have been; Florinef, Ativan, Zantac and magnesium....I am struggling to find an antihistamine that doesnt have terrible side effects although they do help with vasoconstriction Quote Link to comment Share on other sites More sharing options...
kayjay Posted February 6, 2012 Report Share Posted February 6, 2012 Good poll thanks! I wish I could have voted for more than one....maybe in the future that mnoight be interesting. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted February 6, 2012 Report Share Posted February 6, 2012 ddavp Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 6, 2012 Author Report Share Posted February 6, 2012 I knew id forget something - forgot all the MCAD gear as well... oh well... Quote Link to comment Share on other sites More sharing options...
Jan Posted February 6, 2012 Report Share Posted February 6, 2012 I found Lorazapam to be especially helpful for my racing heart. Quote Link to comment Share on other sites More sharing options...
brethor9 Posted February 6, 2012 Report Share Posted February 6, 2012 Sorry Rama! lol to throw in the MCAD stuff......Bren Quote Link to comment Share on other sites More sharing options...
E246 Posted February 6, 2012 Report Share Posted February 6, 2012 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. Quote Link to comment Share on other sites More sharing options...
issie Posted February 6, 2012 Report Share Posted February 6, 2012 TumericMagnesiumOlive LeafThese have helped many.Issie Quote Link to comment Share on other sites More sharing options...
Elfie Posted February 7, 2012 Report Share Posted February 7, 2012 Midodrene has been the best for me, florinef, the worst. I also take metoporol. However, I haven't had opportunity to try many of the therapies mentioned. Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted February 7, 2012 Report Share Posted February 7, 2012 Hi - I havent seen a poll like this for a while so I thought Id pop one up.Just a basic question about medications - which one ultimately has been the most helpful and which was the one you were least able to tolerateThanks for posting this Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 8, 2012 Author Report Share Posted February 8, 2012 No problem - i wanted it to be comprehensive but I did forget quite a few. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 8, 2012 Author Report Share Posted February 8, 2012 Dr Levine will be impressed - exercise has its nose in front now! i assumed saline would romp it in but its now well behind...As for the negs the poor old beta blocker isnt looking so well tolerated...6 found it helpful, more found it detrimental. Quote Link to comment Share on other sites More sharing options...
HopeSprings Posted February 8, 2012 Report Share Posted February 8, 2012 Been keeping an eye on this poll too - Florinef and exercise are neck and neck. Maybe IV saline isn't a frontrunner because a lot of us haven't had it. Quote Link to comment Share on other sites More sharing options...
goldicedance1 Posted February 8, 2012 Report Share Posted February 8, 2012 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. Quote Link to comment Share on other sites More sharing options...
fiona-jane Posted February 9, 2012 Report Share Posted February 9, 2012 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. Quote Link to comment Share on other sites More sharing options...
janiedelite Posted February 9, 2012 Report Share Posted February 9, 2012 Most helpful: plain old benadrylLooking forward to trying: octreotide Quote Link to comment Share on other sites More sharing options...
issie Posted February 9, 2012 Report Share Posted February 9, 2012 Most helpful: plain old benadrylLooking forward to trying: octreotide It helps to block acteylcholine. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 9, 2012 Author Report Share Posted February 9, 2012 Id love to try octreotide as well but its very expensive so docs here wont even consider it.Fiona-Jane - have you ever tried intravenous saline and how did it compare for you against salt/liquid loading orally? Quote Link to comment Share on other sites More sharing options...
comfortzone Posted February 19, 2012 Report Share Posted February 19, 2012 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 Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 15, 2012 Author Report Share Posted March 15, 2012 Looks like the top three are Exercise, Florinef and 'other' - with Beta blockers, midodrine and mestinon doing ok for some. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted March 15, 2012 Author Report Share Posted March 15, 2012 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?? Quote Link to comment Share on other sites More sharing options...
RichGotsPots Posted March 19, 2012 Report Share Posted March 19, 2012 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.. Quote Link to comment Share on other sites More sharing options...
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