H-POTS, severe sweating, MCAD, EDS...need recommendations on some new meds

[Oceank316]

Hi all

I have H-POTS diagnosed 4 years ago. Also have MCAD and EDS (joint involvement)  I taken 80mg of propranolol 3x a day, 50mg benadryl, 150 zantac, Tylenol. But I am lookingto find some recommendations to help control the MCAD better. I've been reading abour Rydapt if any have any usage experience there. Also for the POTS I have terrible excessive sweating problems which of course makes the dehydration worse making me feel worse. My brain fog and exhaustion is getting worse too. I feel like we've just been keeping it somewhat stable but I still end up in the hospital too often on fluids and such and I'm getting dizzier than I used to. 

 

Any ideas on med additions I can discuss with my doctor would be appreciated. I could really use some help from others that go through this because even with good doctors they still don't fully understand it. I am also a registered nurse so it had given me the ability to advocate with my docs who trust me pretty well on the treatment. 

Side question does anyone have issues with slow metabolism due to the POTS or MCAD? 

 

Thanks all 

[StayAtHomeMom]

I can't relate to your conditions a whole lot but I have a medication idea. You were talking about the sweating. When a woman is menopausal the herbal supplement black cohosh is supposed to help. Do you think that may be something to try? I am not making an assumption you are menopausal but I am just thinking out loud that it may help the hot flashing (that I assume is causing the sweating). 

[ks42]

My doctor at Mayo told me that when mast cell is suspected, he always uses a combo of three different drugs: H1 blockers, H2 blockers (both of which it looks like you're on) and a mast cell stabilizer. He says in his experience, often all 3 are necessary to really control mast cell issues. He liked to prescribe Cromolyn oral (it comes in ampules that you add to water and drink), but his NP also told me I could try Quercetin as well (it's available OTC as a supplement). 

I know Ketotifen is also used as a mast cell stabilizer pretty effectively, but not sure we can get the oral version of it in the U.S.

[dizzytizzy]

@Oceank316: I don't have a lot of advice here, but have been diagnosed with dysautonomia (no specific type although hPOTS fits the best) and was just referred for testing for MCAS today. Right now, EP only has me trialing Zyrtec, which I think is an H1 blocker. Maybe switching from the benadryl to another H1 blocker (or even H2) would help? Not sure why/if there is a preference for one over the other. 

Also, have you tried any diet changes to see if that helps? Some people seem to rave about an anti-histamine diet while others get no relief. 

I do have a slow metabolism, but also have Hashi's so that's probably why. Has your thyroid checked out okay?

[Leyes4]

Hey @ks42 did they ever figure out what was causing your super high epinephrine levels? And have you managed to get your hyperpots under control? 
thank you:) I was recently diagnosed and any advice helps