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Ginger


Ernie
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Hi Ginger,

I have just read your post to Miriam offering to ask questions on our behalf. I would have some questions that I would be curious to find an answer or a hypthesis. I would like the answers to be as medicaly technical as possible.

1- With hyperadrenergic POTS, ie adrenaline x20 to x100 above the norm and noradrenaline about x5 above the norm. What could be causing muscle weakness, pseudo myotonia and pseudo periodic paralysis?

2- What medication would help with this muscle problem? (I already am on: propranolol, proamatine, salt tabs)

3- If he has no idea, what specialist should I see, other than neurologist?

Thank you very Ginger for your offer. I will probably never be able to go to Mayo because my government does not pay for out of country care. I appreciate that you take some time for me.

Ernie

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Ernie,

Did you actually have a catecholamine test (24-hour urine or blood test)? I am just curious. I just got my results back for my 24-hour urine and they were very normal -- right in the middle of the reference range. I know this test isn't always very accurate, and I do have every other symptom of hyperadrenergic POTS. I was just wondering if this is how you know you have hyperadrenergic POTS.

Also, have you tried Mestinon for the muscle weakness? That's my next med to try, although I'm a little scared of it because I believe it has connections to nerve gas.

Amy

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Hi Amy,

Yes, I had plenty of catecholamines tests and they were ALL above normal. I am above the normal even lying down so when I am standing it gets only worst!

I tried Mestinon and it gives me severe diarrhea, GI cramps and hence increases syncope.

I was diagnosed with Hyperadrenergic POTS by Dr. Goldstein.

Ernie

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Guest tearose

Hi Ginger...wow, you are leaving soon!

My wish list for the "TESTS TO REQUEST" for you!

1) Tilt Table Test with QSART (BP and HR are standard) if you have cognitive problems then ask if they can check your cerebral blood flow with a color doppler as you get faint.

2) Specialized Catecholamine Test, which is done over about 1 1/2 hours. Your blood is drawn over a period of time in a quiet room. First blood is drawn upon arrival. Second blood is drawn after you have rested in a darkened room in a bed. Third blood is drawn after sitting up for a time. Fourth is drawn after standing still for 10-15 minutes.

3) Thermo Regulatory Sweat Test, you are directed to put on a paper gown and lay down on a table with wheels. The technicians remove the paper and put special tracer leads on your skin and then proceed to dust your entire body with a brownish-rust powder. You are slid into a greenhouse looking like rectangular box and the heat lamps are put on. You lay there for a long time, so it seems...and where you sweat you turn purple. Where you don't sweat will stay brown.

4) Stress Test with Echocardiogram the equipment they use is state of the art and will clearly rule out or find any heart related problems.

5) PLEASE remember to tell your very FIRST doctor that you will NEED to have copies of your records on the day of your departure interview!!! ( Trust me and go to administration if you have any problems. Just get to this forum and let any of us know if you need assertiveness coaching!!!) You want to visually SEE/HAVE the NOTES AND TEST RESULTS/REPORTS AS you review your case during your last "departure/concluding" meeting.

Remember that you have to "go early" and "move up" appointments at every chance you get.

Be sure to eat the popcorn from the subterranean kiosk and explore the underground shops and have fun with your husband in-between the running around you will do.

Wear comfortable shoes. Have your pots tote bag.

Take a notebook. Take notes.

Bless you, it is a real trip but worth it if you make it work!!!

I wish you a restful weekend. Ask more questions if you think of any. I think you are ready!

:)

Best wishes dear traveller...I'll keep you in my prayers! tearose

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Ernie,

I know you probably don't want to take an antidepressant, but if your problem is norepinephrine-related, Cymbalta or Effexor might be worth a try. These are both SNRIs -- selective norepinephrine reuptake inhibitors -- and seem to help level out this hormone. If you are getting no relief from other meds or lifestyle changes, maybe trying an antidepressant is worth it. I am not saying you are depressed, just that these drugs help a number of conditions -- although it's kind of scary that most doctors admit they don't know why.

Amy

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Hi Calypso,

The SNRI would aggravate me because I am already x5 times above the normal range for norepinephrine. I talked to Dr Golstein about it a year ago and he told me not to touch that type of medication because I would be worst.

Thanks for your suggestion. I appreciate that you are trying to help me.

Ernie

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  • 4 years later...

Its weird - in normal people SNRIs actually decrease sympathetic outflow while simultaneously incraesing norepinephrine concentrations. In POTS norepinephrine AND sympathetic outflow are abnormally high and adrenaline is increased to compensate either for vasomotor nerve failure or for cerebral vasospasm.

Many POTS patients still do not do well on SNRIs - particular those where NET reuptake is implicated (but not proven) as the cause of their symptoms. There are other mechanisms that could explain hyperadrenertic POTS - parasympathetic withdrawal or reduced neuronal nitric oxide expression resulting in norepinephrine potentiation (where levels are normal but patients experience hypersensitivity).

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