Hyperadrenergic Pots

[Guest]

Who here has this type and what do you do or take to help symptoms

[corina]

I'm not diagnosed hyperpots but have heard that clonidine can be of help.

[ptalaura]

I have hyper pots. I take too much meds. I am on inderal, mestinon, an ssri, midodrine, efflexor, prevacid, citrucel, fish oil, vitamin D, all these plus meds for when I have a migraine. It seems every time I go back to my dr, something is adjusted, med dose, discontinue med, add new med. It is rare that I go and have no med change. Some make me worse so have to be adjusted, or BP running too high, too much fatigue, never ending. I just try to go with the flow, and know it could be a lot worse.

[smarti54]

I have hyperpots and have had it for as long as I can remember but with the diagnosis last year. I have been tried on almost everything and find that the best combo for me is betaxolol 15 mg every day and midodrine 10 mg three times a day with the birth control pill. The thing is..... It is affected by everything... Stress good and bad, food, sex, standing, sitting, etc. just like traditional pots. The surge of norepinephrine can be overwhelming sometimes. There are days that are ok and days that are awful. Anti anxiety meds (ssri, anti, etc) all made my symptoms worse and I only became better when they quite trying to treat it like anxiety. Best of luck. Trial and error takes time.

[ks42]

I have HyperPOTS. I've tried at least 15 medications, but the ones that have worked the best are Klonopin and Gabapentin together - they both work on the same receptors; Klonopin decreases adrenaline levels, and Gabapentin kind of prevents adrenergic storms, which I was having. Unfortunately, the gabapentin eventually caused insomnia, so I had to stop taking it. I just take the Klonopin alone now, which is still effective. I'm also on IV fluids, as I have a hypovolemic component to my HyperPOTS, and that helps keep all the adrenaline in check too.

Recently I also tried taking atenolol (only 6mg) with the Klonopin, and it worked amazingly well for awhile - all my symptoms were gone, resting and standing pulse were normal (no POTS) and I could basically go back to my pre-POTS life. However, after awhile, it started lowering my resting pulse into the 40's and below - way too low, which made me feel awful. But, I often have resting bradycardia without the beta blocker though, so that predisposed me to be super sensitive to the atenolol.

If your hyperPOTS is caused by mast cell activation, sometimes it can be really helpful to be on a mast cell cocktail (H1 and H2 blockers along with something like Cromolyn). I tried this and it helped some things, but made other things worse. Some people have great success with it though.

[ks42]

Honestly, though, for me it was the combination of the atenolol and Klonopin that had any kind of effect. I had tried beta blockers without the Klonopin before, and they didn't help; some of them actually made my standing BP spike even higher (beta blockers are kind of a mixed bag with HyperPOTs; they're contraindicated in some cases as they can make it worse).

If beta blockers help you a little, but not quite enough, has your doctor mentioned an alpha/beta blocker combo (like labetalol)? Those are used really successfully with HyperPOTS, to my understanding, as some of the BP spikes you get while still on the beta blockers can be offset by blocking the alphas as well. Doesn't work for everyone though, so obviously this would be a discussion to have with your doc.

Clonidine is another one that you might ask about - it's specifically for reducing sympathetic output and decreasing standing hypertension and used by a lot of docs that I've seen for HyperPOTS. I haven't tried it as I'm so sensitive to meds they're reluctant to put me on it, but I've heard it gets really good results for some.

[ks42]

Propranolol is just a beta blocker alone (no alpha). Have you considered being evaluated for mast cell activation (especially since you have itching)?

[sue.zee.q]

My daughter is hyper pots. She had horrible side effects of nightmares and feeling scared all the time with propanolol. Nadalol made her feel horrible and all her joints ache. She is on 6mg of Metoprolol twice a day now and is tolerating it very well. She is super sensitive to any medications so we have to start very low and go up very slowly. Exercising helps her a lot. She can't do much yet but we try to alternate strength training and cardio days. and not a high salt diet, just a salty diet.

[ks42]

As I mentioned in my post above, labetalol is an alpha blocker / beta blocker combination drug, so it's both.

[corina]

Hi Robstah, I think you'd best ask your doctor, don't forget that though we share the same disease, we are all very different!

[ks42]

Definitely ask your doctor about the zyrtec and zantac. For one thing, like corina said, we're all very different. I had a severe reaction to mast cell medications that put me in the hospital, and the dose you need will depend on your individual situation (and your mast cell test results), so you'll need to do it under a doctor's supervision. Secondly, you need a doctor to check for interactions with any of the other drugs you're taking. For example, Klonopin and Zyrtec normally shouldn't be taken together - it can be dangerous (I'm not allowed to take Zyrtec, even in baby doses, as long as I'm on Klonopin) and there are various other drug interactions with H1 / H2 blockers you need to be aware of.

Also, if you are trying to take them for mast cell activation, just taking those two alone very likely may not work. Typically you would need a mast cell inhibitor, like Cromolyn, which is prescription only, to be taken along with them to be effective.