Hyperadrenergic POTS?

[HeidiHope]

I am just wondering if anyone has Hyperadrenergic POTS?  I've chatted with a few people on a different forum, but no one has this form, and I have a lot of questions.  I am supposed to have a complete hysterectomy soon, and I am wondering if anyone has this type of POTS and has gone through menopause, and wouldn't mind sharing with me what it was like.  I am in medical menopause now (I'm 28, so this happened unexpectedly), but I was told today that it's not quite the same, and I am really nervous.  I've suffered from POTS symptoms since I was 12, but just got the diagnosis last March, so everything is still relatively new to me.  Also, I haven't been able to find a medication that helps, and I seem to experience every side effect there is, so I am wondering what people have tried that has worked.  Thanks.

[auntissie]

Quercetin is supposed to help histamine levels.  I know with myself -- food allergies play a big part.  Taking quercetin seems to help allot of things.  Just a natural alternative.  Also, you can get H2 blockers over the counter.

[HeidiHope]

i had my histamine levels checked while in the hospital.  I have bad allergies, but the test was within normal limits, and it was done right after a very bad episode on the tilt table test.

Heiferly
Good point!  I am hoping my doctor will be understanding as well.  My gynecologist and GP weren't willing to prescribe it, but I don't think either are all that familiar with POTS.  I asked the GYN because it's always worst around my period.  It's good to know you've been able to have a lot of relief by taking it.

[san635]

There is something call mast cell activation with POTS. Not an expert but if you get the flushing with your POTS, a histamine level and I believe 24 hour urine collection will pick this up. You would benefit from H2 histamine blockers if it shows up positive (meaning a level greater than the normal seen in these test). Should do the test when you are having the flushing. My daughter has the allergies and flushing but both hers were within the normal limits. She did not have as much flushing during the testing.

[Heiferly]

I take a low dose of lorazepam every single day, have done so almost without any breaks for about a decade, and will continue to do so long into the forseeable future.  While some doctors aren't over-the-moon about this, my thoughts on it are as follows:

1.  If I were displaying truly "addictive" (vs. medically dependant) behavior, I'd be going after steadily increasing doses of it, which has not been the case.
2.  The medication works better to control the symptoms for which I take it than anything else I've ever tried, and anything else the doctors have been able to offer.  The fact of the matter is that benzodiazepenes are perfectly targeted to alleviate my symptoms without causing a host of side-effects or interacting with the other medications I need to take.
3.  Diabetics take insulin every day for the rest of their lives and aren't considered "addicted."  People take thyroid medicine every day of their lives.  Narcoleptics take medicine every day.  Etc. Etc. Etc.  Some conditions need to be treated permanently, and I don't think my symptoms are any less worthy of treatment than any other chronic illness.  I have a chronic illness and I'm deserving of relief.

I'm fortunate enough to have a team of doctors that is supportive and understanding of this.  I hope you find a sympathetic ear in your doc.

[karinosa]

Just to let you all know I go see the kidney specialist on Tuesday, I'm soooo happy!  hoping he'll be able to tell me about the on/off swelling.

To san635, no I haven't had my histamine levels checked - I don't think?  although I do have lots of allergies so I'm assuming they would be high when my allergies act up...

Wishing everyone a happy Sunday : )

[san635]

To the hyperadrenergic POTS. Has anyone had their histamine level checked