Hyperpots Treatment Options

[Clairefmartin]

So I'm almost 100% sure I'm hyperPOTS. My heart rate skyrockets and my BP goes up when I sit up or stand, usually by 30 or more systolic, and I get my standing Cathecholemine/NE results back soon. But beyond that, I have terrible adrenal surges, and they have increased dramatically lately.

I'm ending up a shaking mess with actual muscle spasms now from the smallest activities, and am on no meds besides a pretty low dose of Klonopin, Zantac, and Ibuprofen. I'm weaning my daughter from nursing so I can try some meds, because I havent left the darn house in over 15 months, and can't stand for more than 90 seconds without starting to pass out.

I go see a new neuro (Dr. Chemali) who just moved here from Cleveland Clinic in about 10 days (not that I'm counting or anything), and I was curious what you hyperPOTS folks do for treatment.

My biggest issues are the surges, massive crazy fatigue and exercise intolerance, and of course passing out when standing/not tolerating being upright well. My last round of tests showed off the charts pooling in my right leg. I think my bp goes up up up and then tanks and drops - can you have HyperPOTS and NCS/NMH? And the MCAD stuff - the random reactions to loads of triggers.

I'm reseaching meds, so any personal things that have helped IN YOUR OPINION would be great! Thanks so much!

Claire

[ramakentesh]

I guess the first point Id make is that you cant easily differentiate based on subjective symptoms what type of POTS you have - most doctors would say that they all present almost identically and that there is increased sympathetic drive and those kinds of symptoms in all forms.

Some say that if you have postural hypertension and increases in NE then perhaps you are hyper, but other doctors think that a hyper presentation is just a compensatory mechanisms for similar blood flow abnormalities as are found in all POTS patients. Still other docs think that hyper POTS is related to either low blood volume or increased angiotensin II.

I have what some doctors would regard as hyper POTS - elevated MSNA, elevated orthostatic blood pressure most of the time, alpha receptor sensitivity, yet I also have characteristics of autoimmune POTS - abnormal pupil activity, waxing and waning course, and comorbid autoimmunity and my doctor has diagnosied me with 'autoimmune POTS'. Ive been doing pretty well on mestinon.

For true hyper POTS they suggest low dose clonidine, low dose methyldopa, or other meds that decrease sympathetic outflow. Labitilolk and even phenobarbitol are mentioned sometimes, but many find that when they take these meds their fatigue is even worse. Some do ok on these, but many Ive spoken to have had trouble with worsening dizziness and fatigue.

Melatonin apparently makes most OI worse but makes POTS in some patients better and a few have suggested it might be a way of seeing wheterh your problems are primarily caused by sympathetic excess in response to normal blood pooling, or the sympathetic excess is a response to the pooling.

[kayjay]

I was diagnosed with autoimmune hyper pots. I am on nadolol as a beta blocker. I will pass out although this is more likely to happen when exercising or when it is hot. Compression has helped me as well as drinking V8 before I get out of bed. I also take klonopin and cymbalta. I had horrible surges and beta blockers can really help with that. In addition, getting some sleep at night is important. I am currently taking a sleeping aid. I think regardless of your "type" of pots some trial and error is needed to find out what will help you.

The beta blocker has helped keep my hr at a more reasonable level. For me it has been helpful to give medications a fair trial to work. It took a few months before I noticed an improvement in some symptoms. Rama mentioned mestinon. I had too much GI trouble when I first took it but I am considering taking it again. Klonopin sometimes makes POTS worse for some but after stopping it a few times I am fairly confident that it helps me.

It may be worth doing a 24 hr urine to check your sodium and potassium levels. When mine were low, my symptoms were much worse.

Have hope. I have POTS and other autoimmune problems but it has been some time since I have had a horrible adrenal surge. I wish I could tell you definitively which drug gave me relief, but it may have been a combination of factors.

[Schorobi]

For me, the terrible shaking "surges" went away with florinef and high sodium diet/salt tabs. I also use clonidine (patch). I am also on month 5 of Dr. Levine's protocol. This combination has helped me greatly.

[ramakentesh]

Exercise certainly seems to help most. I used chinese herbs for a really bad surgey period. Otherwise licorice and florinef have helped in the past.

[Clairefmartin]

Thanks all. Rama - my test came back that my sympathetic was insanely high and out of whack, and that my right foot was pooling. Thats all I've had done so far since my lame excuse for a TTT in 2003. I have autoimmune issues as well - Reynauds, gluten intolerance that is probably Celiac (not willing to eat it again to get offial DX). And every woman on my Moms side has an autoimmune disease.

I get the POTS stuff, its the crazy fatigue and inabilty to tolerate activity that is really new to me. And exercise makes everything worse. Very frustrating. I broke down and bought full length compression hose and a portable ramp so I can maybe have hopes of leavibg the house without passing out on the way down the stairs, or using up all my energy going down on my butt and having to rest for hours, thus negating the trip:)

I have heard Clonodine is good from a few with hyperPOTS, and I tolerated Toprol/Florinef combo before, so may try that again. I hated the side effects though, and my POTS was different back then (this was 5+ years ago).

I'm wondering how the breastfeeding is either helping or hurting me as well - on one hand, I am retaining more fluids and my BP is good as long as my legs are up, but on the other, it is a major stressor on the body.

And I thought based on literature that hyperPOTS is when your NE levels rise above 600 (forgot the units) along with BP elevating when upright? Am I wrong on that?

Thanks again!

[MomtoGiuliana]

I don't know if I have hyper POTS or not. Never had any testing beyond TTT. My bp does go up when I am having a flare up but as has already been said, this is not necessarily a marker of hyper POTS. I also get terrible adrenaline surges, shaking/tremor, and severe fatigue. Anyway, stopping breastfeeding seemed to really help me. I hated to do it when my child was only 4 months old, but I was very much like you, taking care of my child mainly in bed, unable to stand for long, severely fatigued, etc. I also started a low dose SSRI at that point and while adjustment was hard, I think it did help as well.

I hope you start to feel a lot better soon.

[issie]

My understanding of hyperPOTS is high bp's and high noriepi levels. And yes, I qualify on both levels. I've tried nearly every medicine given for POTS and to date the best RX's for me are Tramadol and Bentyl. I don't know why that combination works for me - but, it does. I'm also trying to tweak that forumula that I posted a few weeks ago and get it perfected. I figured out some of the things I was taking was not good for me and some are still helping. So, still playing around with those things. I also have EDS and MCAD. MCAD lets beta's out as an option, for me. But, before I knew that I tried so many different kinds. I'm super sensitve to meds and have to take very small, minute amounts. So, I'm a hard one to treat. I've about figured out that I'm low flow - because, I'm doing so much better on vasodilating things rather than vasoconstrictors. So, allot is going to depend on what subset you are.

Issie

[Clairefmartin]

I don't know if I have hyper POTS or not. Never had any testing beyond TTT. My bp does go up when I am having a flare up but as has already been said, this is not necessarily a marker of hyper POTS. I also get terrible adrenaline surges, shaking/tremor, and severe fatigue. Anyway, stopping breastfeeding seemed to really help me. I hated to do it when my child was only 4 months old, but I was very much like you, taking care of my child mainly in bed, unable to stand for long, severely fatigued, etc. I also started a low dose SSRI at that point and while adjustment was hard, I think it did help as well.

I hope you start to feel a lot better soon.

I'm thinking this may be part of the problem, thank you! My goal was 6 months, and we made it, and she's losing interest anyways and loving solid food so we have started weaning. I just woory about the fluid retention thing, but we'll see.

And thanks Issie, I react very badly to lots of meds, thats why I want to try a targeted approach. I really dont want to take Midodrine. even though thats what they're pushing for, but my BP spikes so it worries me in terms of spiking too high.

[MomtoGiuliana]

I'm glad you made it to your goal. 6 months is good, and you should be so proud of what you have accomplished under enormous difficulty. The first few months are the most critical for breastfeeding, obviously...

As far as fluid retention--I hear you, but something more complex was going on in my case, overriding any benefits of fluid retention. Maybe in yours too...