Pistol Posted July 20, 2018 Report Share Posted July 20, 2018 Hi - this post is for anyone with hyperPOTS and hypertension. For the past few years I have been relatively stable ( except for triggered flares ) with my vital signs. I take Carvelidol, Diltiazem and Guanfacine for my hypertension that is caused by hyperPOTS. However - recently I have had high BP with standing AND resting: 159/103, 140/100 etc, sometimes also get rapid increase of HR out of the blue. With the high BP I also get severe chest pains ( have had recent normal heart cath, so no danger of blockages ). At first I was told to increase my carvelidol but that did not help. Then I was admitted to hospital for chest pain and hypertension and received several bags of LR at a rate of 125 ml/hr and - poof, my BP came down, HR was normal, chest pain was gone. After 2 days my BP went back up again- 160/90. My autonomic specialist recommended I increase the diltiazem ( which is a calcium channel blocker and causes vasodilation ) and now my BP is low - normal but I feel great with low BP. Has any one here experienced sudden onset of high BP with hyperPOTS and how did you treat it? --- Thanks for any answers. Quote Link to comment Share on other sites More sharing options...
p8d Posted July 20, 2018 Report Share Posted July 20, 2018 Yep, been there. We upped Bystolic (selective beta) and clonidine which helps somewhat. Clonidine lowers my BP/HR in about a half hour. I still am getting stupidly high flares and can’t find a cause. My sitting/supine can get very high 180-200s/90-100. I was told to take off the compression stockings and pop a clonidine or go to the ER. I avoid the ER/ hospital as much as I can. My insomnia has gone bonkers too but I think that’s the increased alpha/beta blockers. Quote Link to comment Share on other sites More sharing options...
jklass44 Posted July 20, 2018 Report Share Posted July 20, 2018 Last year, before I had my diagnosis of hyperPOTS, I was admitted to the ER for hypertension and I was in vtach. They did bloods, xrays, urine and it all came up clean so in the end they said well that's weird let's try some IV fluids... Worked like a charm. BP and HR came down and I felt so much better, more energy, etc. Im still trying to find a beta blocker that works for me because oddly enough they make my chest pains worse. But yes, this heat sucks and I wish I had access to IV fluids all the time because just drinking water doesn't help me 😂 Quote Link to comment Share on other sites More sharing options...
MomtoGiuliana Posted July 20, 2018 Report Share Posted July 20, 2018 This happens to me too. When I am not in a flare my bp is 110/70 or so. When in a flare it's 130/90 or even higher at times. Fluids and salt typically bring it down. Compression helps a little. I also take pindolol which I realize is often not the beta blocker of choice for POTS but it works well for me. In flares I increase the dosage. When I am well I take a very tiny dose daily. Quote Link to comment Share on other sites More sharing options...
Scout Posted July 22, 2018 Report Share Posted July 22, 2018 I'm so sorry you're having this happen @Pistol. I'm still trying to find something that works for my flares, as I have very similar readings to yours. My BP can be totally normal and on the low side, and then unexpectedly high at other times, making me feel very ill. Similar to yourself, and other folks above: I have found fluids usually help a lot, and make flares / episodes less frequent, but they don't stop them entirely, and sometimes not even close. Truly wish I had something useful to suggest, but until I see my specialist for the first time (still on a wait list to see a local ANS specialist), I'm afraid I feel rather useless. @jklass44 I have a similar issues with beta-blockers. Chest pains, and they don't control my symptoms anymore, for some reason. Lots of trial and error, I suppose. Quote Link to comment Share on other sites More sharing options...
Weary Posted July 22, 2018 Report Share Posted July 22, 2018 Am reading this thread with great interest. although i'v e not been diagnosed with Hyperandrenergic pots (havent' had testing), if i do have POTS, its the closest, though i suspect its not the perfect label. Anyway, keep getting spikes in bp and so very interested in how to control them. I"m also getting the chest discomfort i think you are describiong. What is the LR you mention? do you mean maybe ringers solution? any idea why you think that helped? most of the time, mine is high, but the time course of changes over 24 hours is odd and then i get spikes. So i've been measuring for quite a while, and my lowest is mid afternoon, ussually after a nap if i can manage it - and for me this is low, but i can get it down all the way to 133/79. But then it starts to climb in evening and before i go to sleep i'm at 163/90 and sometimes rises from there. olddly on saturday, my adreneline stimulation seemed to vanish in an instant- as i posted yesterda thats wh i was able to come back on the list. But then overnight last night, seems to have come back with a vengenace, could not sleep, and bp up today. i have no idea this time what triggered either the one day relief, or the rebound. i of course try to prevent with cr9ises, but if i had to go out today, i'd be in a crisist. in crisis, i go up to 220/120. am interested in taking clonidine on an as needed basis like the poster above- but that has the reputation for producing huge rebound when one goes off. Can ou comment on if that happens for you? so ou take x dosage as a rescue and then just that once? what happens to our bp over the next 3 days? tomorrow am tring out a new internist. I"m guessing i will be in crisis, but am trying not to be. when they see me in hypternsive crisis, all the do is get flustered and can't think past that and there is so much i need to begin discussing with a new interneist. ok, sorry for rambling. another concrete question: since youre doing well with the calcium channel blocker, did you stop taking the other 3? (so far i'm still delaying taking anything. i want autonomic testing first, and i want to see what happens if only i can get 6 staight weeks of sleep, though i don't know how to make that happen. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 22, 2018 Author Report Share Posted July 22, 2018 Hi @Weary - yes, LR means Lactated Ringers solution and I do so much better on that than with NSS ( normal saline ). NSS makes me swell up with retained fluids - LR does not. I think it helps because it regulates the pressure within the vascular system ( blood vessels ) and therefore interrupting the faulty messages of the ANS yo overcompensate by constricting the blood vessels. --- I am still taking all of my other meds and am definitely feeling much better since on the higher dose of calcium channel blocker - and I am still benefitting from the effect of the IV fluids - more energy, less brain fog, just feeling like a regular person. ( Doctors do not understand the effect that IV fluids have on us but in my case it tis that I get my life back, at least for a while!) --- Best of luck with your new internist - I wish you only the best! Quote Link to comment Share on other sites More sharing options...
Weary Posted July 23, 2018 Report Share Posted July 23, 2018 i don't think i mentioned in above post, though not 100 percent sure, that when i had one of the first bout with these "spells" i went to ER and thought it was because i was very anemic. They started iv fluids right after drawing blood. when my hemoglobin came back no that bad, they lost intereste and sent me home without even seeing the doc again (I was later to complain because i went there for heart symptoms and they didn't even bother tsting that. they saw I had tachycardia so the doc estimated how much blood i must have lost- and then when his hyoptheses was wroing and i was not that anemic they presumably jsut shrugged and sent me home) anyway the point of that long message is that i felt GREAT from the IV fluids. when i went in, i needed a wheelchiar since i could not walk the few feet, and on the way out zero trouble and felt nomral (now i never feel nomral but back then i did). i mentioned it to the nurse, and she said i was probabl dehydrated. I don't think that's right (but at least she tried more than the doctor did),I think it was just saline though for me. i need to read thru again what ou think that mechasim is. Do you mean that our own faulty signal is not longer present because its taken over by ? By something. I was not aware that ringers solution could be used to lower bp. or rather was not aware ERs used that to lower bp. Quote Link to comment Share on other sites More sharing options...
Pistol Posted July 23, 2018 Author Report Share Posted July 23, 2018 @Weary - no - IV fluids of any kind are not given to lower BP, they are usually given to increase BP by increasing the volume of fluid in your blood vessels as well as reversing dehydration. The interesting thing in my - personal and individual - case is that it LOWERS the BP and therefore stops the faulty ANS reaction. Quote Link to comment Share on other sites More sharing options...
yogini Posted July 24, 2018 Report Share Posted July 24, 2018 I am not familiar with ny of the BP meds you list. POTS patients with high BP and high HR in POTS often take beta blockers. Quote Link to comment Share on other sites More sharing options...
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