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Hi there, 

Just wondering — for those of you with hyper-POTS, which meds have worked the best?

I did not tolerate beta-blockers (metoprolol in particular), and seeing my doc soon so planning to ask for an alternative. 

Does anyone take calcium channel blockers, and if so, which one?

The main symptom I want to stop is my spiking BP. 

 

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@Scout - hyperPOTS runs in my family, most females have it in 3 generations. We all suffer from high BP and - of course - all the other mix-ins. My sisters and I are all on Carvelidol, started at a low dose and then titrated up ( I take 25 mg twice daily ). My one sister and I both benefit immensely from diltiazem ( calcium channel blocker ), but my oldest sister did not tolerate that. Another med that has shown extremely effective in BP control for us is guanfacine.  Both my sisters take Clonidine for breakthrough BP spikes during flares, but I did not tolerate that at all.  As you can see - although we all have the same illness, treatment is still different for us. Another medication that has shown very helpful for POTS in our cases is Buprobion ( Wellbutrin ). It has really improved my energy and mood, therefore making it easier to follow my exercise regimen ( which also helps with BP control ). 

Yes - Diltiazem is a good medication to try for hyperadrenergic POTS. It helps to dilate the blood vessels and therefore preventing the BP to rise ( which in our case sky-rockets once it is triggered ). However - I doubt it would be as effective on it's own, at least in our case. It appears the combination of Carvelidol and diltiazem does the trick. I hope your doctor is receptive to try a new med for you. In our cases it was a lot of trial-and-error, but thankfully I was the first one ( after my mother ) to get ill with it and could set the groundwork for my sisters. Their docs simply try everything I am on, so it does not take years for them ( as it did for me ). Best of luck!!!!!

P.S. I forgot to mention that we all get IV fluids - my one sister and I get them regularly scheduled ( weekly and more if needed in my case ) and my other sister gets them for flares. But this is a much debated option and currently mostly used for severe cases. But if nothing else helps it often can stop surges. 

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@Pistol and I are strangely similar for not being related!  On her advice I am now on coreg and guanfacine but they don’t stop my spikes.  I spike from anything my body perceives as stress—phone calls, upright too long (varies on fluid intake and amount of time), strong emotions, being in moving vehicles, Dr appointments  etc. etc.  I tried clonidine which caused rebound hypertension badly, methyldopa which didn’t seem to help and now guanfacine which I like but doesn’t stop the spikes.  My cardiologist has me take an extra low dose of coreg an hour or so before anything “stressful” which helps.  I have noticed 2 things that directly impact my spikes—fluid intake, I tend to feel weird and HR can be high and BP low an hour before I do something outside the house (I am housebound) so I drink 8+ ounces of water and an hour later BP is 170+/90+, I obviously have to stop this and the other are any drugs that end in “ine”—diphenhydramine, my sleep med mitrazipine and caffeine are examples. Right now I have stopped these and am desperate for a good nights sleep.  I see my neurologist this week and will ask about Wellbutrin and next time I see the cardiologist in April will ask about diltiazem. I do wonder about a benzo instead of the extra coreg or diltiazem since mine seem directly related to stress but I know my neurologist is opposed to them in dys. I am on SCIG which helps a lot with many symptoms but not yet BP. @Pistol do you take the diltiazem daily or as needed?

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2 hours ago, p8d said:

I do wonder about a benzo instead of the extra coreg or diltiazem since mine seem directly related to stress but I know my neurologist is opposed to them in dys.

@p8d - my specialist is also against benzos for the surges. I do use a low dose Ativan for sleep occasionally. For me it does nothing if used during a spike - but at times can prevent one. My specialist also mentioned that many dysautonomia patients end up becoming dependent on benzos. 

Regarding the Diltiazem - I take 180 mg daily. I started with 30 mg twice a day and slowly increased. I used to take 240 mg but since I get the scheduled IV fluids my BP runs a lot lower and I decreased to the next lower dose. I do not believe that Diltiazem is a good medication to take as needed but Carvelidol is for me. When becoming hyper I take 12.5 ( half dose ) mg extra and often it helps. 

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@p8d - in my case it does not cause OH but I reckon it could if taking too much. It does help with preventing spikes and keeps me more stable, but before the IV fluids I still would spike despite the Diltiazem. Having said that - I was much better on it, in addition to the other meds. Thay all work together as a combination - I could not tell you which one is the most important. I just know that all of them combined do the trick for me and I do not have any side effects ( but that is not to say it is that way for everyone ). 

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hi I just wondered if any of u had advice for me first all so sorry to see so many people suffering hope u all ok in this horrible stressful time across the world with the flu. I am 29 I have mast cell activation syndrome I am currently trying find a  drug to help that . I also have pots or a form of dysautonomia  they cant put label on me at mo anyways................... I have strange one for you so currently in a flare or something been going on months...my blood pressure on standing walking is in the very highs 178/182 this morning on standing then sitting....98/72 so then to add to that heartrate 169s this is typical day for me up down like roll coaster .  just really wondering if anyone elsehere is suffering same going to go up read all again due eyes not focussing .sorry for post crashing!!!!! please forgive me hope u all stay safe 😃😃

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@FileTrekker Absolutely agree. Beta blockers have really not helped me in the past. If anything, they seemed to worsen matters. But I will look into Coreg, as a few people mentioned it on here, and it seems it is a different type of BB (alpha and non-selective blocker). My doctor was happy to give me a script for some. 

Thanks so much for the replies, by the way! Sorry for my late reply. Life has been a lot lately!

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I have a fair amount of Diazepam, but I am worried about needing it daily.

Do you take it? Does it help with the spikes? 

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23 hours ago, Philipp said:

I am currently waiting for my Angiotensin II antibody Test. I have confirmed antibodies against a1 and m4 receptor

Where did you have those tests done?

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