Hypergeneric Pots ?

[Guest Alex]

again, check with your dr before!

You mentioned bananas...are you on florinef by any chance, or you just enjoy them as much as I do ?

Florinef is notorious for depleting you of potassium, so you might want to check your potassium levels - I needed as much as 2.4 g potassium per each 0.1 mg florinef and that's nowhere near what 2 bananas can provide...but we're all different.

Alex

[Achilles2323]

i am on

atenelol

midodrine

doxazosin and

klonopin

never took florinef

but my potassium is always low for some odd reason even tho i eat bananas and drink Gatorade every day

i have had POTS for 4 months so i am not sure as what caused it because it just came on out of the blue

but i kind of hope its not hyper because i heard its harder to treat and will not have a chance to go away

as pots with no underlying condition can go away is what i am hoping for

but this blood cat test should do it..

30 min rest take blood

and then

30 min standing up and take blood correct ?

[kitt]

Another way to look at it would be - do symptoms of sympathetic activity predominate or does dizziness/weakness?

Rama, can you explain why you differentiate between sympathetic activity and dizziness/weakness, meaning why are the two symptoms indicative of a different causation? Are you saying people with dizziness and weakness do not have excessive symptoms of sympathetic activity?

It's interesting as I obviously have excessive sympathetic activity and generally don't have dizziness or weakness. Why is dizziness and weakness NOT a sign of excessive sympathetic activity?

[Guest Alex]

yes for the blood test you have a needle inserted in a vein, then you should be lying down in a quiet, stress free, temp controlled environment, (no talking, no tv, no phone, no distractions) 30 min later blood is drawn lying down.

then you stand for 30 min (some draw blood sooner than that) and again a blood sample is taken (no extra poking should be done as it is possible for the poke to increase your stress levels and affect the results of the test).

I've been dx-ed with POTS 16 mo ago and I still don't'know what caused it. I tried many meds most of which made me worse, and I'm still looking for answers.

Ever considered potassium supplements if you tend to be deficient?

Hope you figure things out soon.

Good luck with the blood work and good luck finding a good POTS dr.

Keep us posted.

Alex

[Achilles2323]

thank you so much

[issie]

Another way to look at it would be - do symptoms of sympathetic activity predominate or does dizziness/weakness?

Rama, can you explain why you differentiate between sympathetic activity and dizziness/weakness, meaning why are the two symptoms indicative of a different causation? Are you saying people with dizziness and weakness do not have excessive symptoms of sympathetic activity?

It's interesting as I obviously have excessive sympathetic activity and generally don't have dizziness or weakness. Why is dizziness and weakness NOT a sign of excessive sympathetic activity?

http://www.permanente.net/homepage/kaiser/pages/f63638.html

Kitt,

Rama is probably working right now ---so here is an article explaining the sympathetic system and it's response vs. parasympathetic response. Hope this answers your question.

Issie

[looneymom]

Alxe

In hyperpots, is the NE being released when a person is standing or is the higher blood pressure a sign that this is happening. I understand that these people also have higher blood pressures when standing. I'm trying to understand if there is a connection to when the NE is released in these patients. I've noticed that my son's blood pressure is always higher in the afternoon and that sometimes he is very flushed and sweaty. I'm wondering if this is a sign of hyperpots in him because of the increase in the blood pressure. I wish it was possible to run the test but due to his condition it's not possible. The cardiologist did start him on clonidine and this has helped. His shaking has decreased and he is able to finish his physical therapy sessions. I know that clonidine is used to treat hyperpots but I'm trying to figure out if an overload of NE would cause the shaking, tremors, and sleeping issues that my son is having.

[Guest Alex]

looneymom,

I'm guessing the NE may play a role in the sx your son is having. I don't know what other tests might help differentiate hyper POTS aside from the standing catecholamines....

Hopefully someone with hyper POTS will chime in and answer this question. I only know about hyper POTS from what I've been reading, but what you're describing: the flushing, sweating, shaking, tremors, sleep issues surely point towards an NE overload. Also the fact that clonidine helps...I believe that clonidine is one of THE meds that helps in hyper POTS.

I can't really comment on the BP - don't really know what numbers you're talking about, and at the same time you may want to keep in mind that our BP is constantly changing throughout the day and there are many factors that can influence it.

Hope this helps and as I said, someone with h-POTS may be able to relate and tell you more.

Best,

Alex

[issie]

I would look into MCAS (mast cell activation syndrome) - flushing can be one of the signs of that. With mast cell problems - clonidine is one of the drugs that we can use. There could be NE release as many of us with MCAS have HyperPOTS. I have higher bp's as one of my problems. Exercise also can bring on a mast cell release.

NE being released causes the veins to vasoconstrict. It can be a compensatory thing in trying to get proper blood flow to the heart and brain. This can happen with upright posture. If there is the same type of thing going on without upright posture and sometimes without even movement - that may be a mast cell issue. (I can have these surges with lying down.) Also, mast cells tend to degranulate at night and can cause sleeping issues.

Issie

[Achilles2323]

What test is used to diagnose mast cell issues ?