Confused On Current Pots Theories

[Clairefmartin]

Hi everyone,

There is a lot of research and talk going on, an I just wanted some clarification if you don't mind taking the time. I am on the hunt for anwers for myself and of course others I know dealing with POTS.

So....what are the current theories on what causes POTS? I saw RAMA summarize 5 main theories quite nicely and can't find the thread! Especially hyperPOTS (where no other cause is found such as EDS, Lyme, or Sjogrens)

I know there is the Low Flow/Normal Flow research going on

The NO deficiencies

The Ang II issues

Mast Cell Issues

If you have any input or links to papers I'd apprecaite it, I'm trying to present this to me local docs (for what it's worth). THANK YOU!

Claire

[jangle]

Cfmartin, I can't comment on the hyperadrenic, NO, Mast Cell theories, but Dr. Stewart recently wrote an article online going over several proposed mechanisms of POTS/OI: http://emedicine.medscape.com/article/902155-overview

As for the angiotensin ii theory, I'd be happy to answer any questions you have as best I can. I threw out everything I know on the last thread.

[Clairefmartin]

No other input I'm very confused! But thanks Jangle, and I read your entire thread! Good stuff!

[Dizzysillyak]

Imho, chasing these chemicals isn't productive because traditional medicine never looks

for root causes of why these are off. Root causes can include food intolerances via leaky gut,

nutritional deficiencies due to gut damage, poor diet or genetics, toxins and pathogens like

bacteria and parasites. Imho, Caffeine or other drugs, if possible and with dr's supervision, should be eliminated too. I took myself off klonopin ama but it's because my idiot doctor was insisting I had an anxiety problem and needed it for that. It turned out that getting rid of her helped my anxiety level .. Lol

Because I had ataxia for 16 1/2 years, it's possible that brain damage may be

causing oi.

Integrative or functional medicine look for and treat causes.

I still have oi but I'm working on it. Recently, h pylori increased my oi dramatically,

so I'm looking more closely at pathogens.

We're all different tho, so treatments may need to

be individualized once the Common underlying problems have been addressed. Dr terry wahls and dr myhill explain this ..

Tc .. D

[kmichaelson]

Cfmartin, I can't comment on the hyperadrenic, NO, Mast Cell theories, but Dr. Stewart recently wrote an article online going over several proposed mechanisms of POTS/OI: http://emedicine.med...902155-overview

As for the angiotensin ii theory, I'd be happy to answer any questions you have as best I can. I threw out everything I know on the last thread.

Thanks, Jangle, for sharing this! (And thanks, Claire, for asking in the first place!) I feel like I finally have a slightly better handle on the different identified mechanisms going on with so many of us. I feel like I have so much to learn about this disease and I'm grateful for all of the knowledgeable people here!

[bellgirl]

Thank you for this explanation, it was the most informative, and thorough article I have read, not that I understand it all, but there is still so much that the scientific community doesn't understand either, and sometimes they do treat the symptoms and not the causes, but when they don't completely understand the causes, and everyone is physiologically different, they have no alternative. I've always said that science is both an art and a science, and that is why it is helpful to be right and left brained in our thinking when it comes to this. I believe if you find the right doctor for you individually, you will eventually get the right palliative treatment. It is true that there are not only different forms of this illness, but also different degrees of it, as well. We are our best advocates, and the more we do, and the scientists do to research our illness, and find doctors who are willing to work with each one of us, individually, the better the treatment will be!! We also need to help promote awareness, too, so that more doctor's will be interested in learning more about this disorder, and be proactive in finding a reason and a cure...Exercise is so important, no matter what you have to do to get it; I'm convinced of this. Do everything in your power to be as active as you can be, listen to your body, rest when needed, but moving is imperative to be as healthy as you can be!

[ramakentesh]

According to the Primer of the Autonomic system they are currently catagorised as:

1. Hyper/Low Flow - elevated Ang II, low NO, NET deficiency or idiopathic hypovolumia - pallor, cold skin, supine tachycardia, associated with low body mass, increased MNSA, perhaps elevated NE or postural hypertension. intense peripheral vasconstriction, stomach pooling. Blair Grubb also believes beta 1 receptor autoantibodies.

2. Normal Flow - pooling in the stomach, perhaps increased NO, or neuropathic - orthostatic vasoconstriction, parasympathetic or vagal withdrawal, bluing hands and feet.

3. High flow - autonomic neuropathies and perhaps autoimmune mediated gangliopathies - increased blood volume, increased cardiac output, increased blood flow to extremities, hot, warm feet and hands, failed QSART, increased capillory filtration, responds well to midodrine.

cant comment on the mast cell because I assume someone else knows more than i do.

this is all from the Primer - this and other articles contain this information.

[ramakentesh]

Also low renin and ald is associated with low flow POTS.

[jangle]

I think I fall into the normal flow, my feet turn blue, but my hands typically stay white and cold.

[Guest tearose]

I agree the theories are still being developed and we are all so different. What works for one may not work for another. Our other "conditions" may make certain modalities not possible. As was said, finding the right doctor and developing a good treatment plan makes all the difference.

Drugs are not an alternative for me so I must use a variety from this list: compression, electrolytes, rest, activity, heating/cooling aids, a seat cane and compression. I also meditate.

[Trach]

In the book," Together we Stand Riding the Waves of Dysautonomia", Dr. Blitshteyn also adds two more possible causes being studied:

1) POTS and beta 2 adrenergic receptor

2) POTS and nitrous oxide

If anyone wants the info, I will be happy to type it from the book. I don't understand the concept well enough to summarize .

Trish

[McBlonde]

Also low renin and ald is associated with low flow POTS.

What's this one? Low renin and ?

[ramakentesh]

Low renin and aldosterone.

There is bluing in low flow as well as normal flow - in any where there is intense vasoconstriction which happens in both.

There is one study on 'POTS and beta 2' - it just found that POTS patients that fit the hyper variety have decreased beta 2 vasodilation, it didnt suggest that was the cause of their POTS.

POTs and nitrous oxide - that sounds like fun since that's laughing gas. I think you mean nitric oxide - referred to above as NO. NO is implicated in some Low Flow POTS and normal flow POTS, although work by Vanderbilt suggested no association with POTS and nitric oxide in their patients.

[Lenna]

NO is implicated in some Low Flow POTS and normal flow POTS, although work by Vanderbilt suggested no association with POTS and nitric oxide in their patients.

I'll eat my hat and anyone else's if NO isn't implicated in low flow POTS. Since starting on Losartan to increase NO, my son's POTS symptoms have decreased to the point where he is finally functioning again after four long years!

[bellgirl]

I agree with Lenna...I'm on Losartan, too, which decreases Renin/Aldosterone production in the kidneys and adrenal cortex to decrease vasoconstriction, and I have symptoms of hyper/ low flow and high flow, so where do I fit into this weirdness One minute I'm an ice cube, and freezing and the next, I'm on fire and sweating/flushing. Very rarely do I feel normal, temperature wise. I'm thinking it's my hypothalmus.... I'm way past menopause, so I can't explain it away with that, as I used to think, to understand all of this!! In fact right now, my right hand is cold and my left hand is hot, and I'm typing

[ramakentesh]

Losartan doesnt just increase nitric oxide - its direct role it to decrease angiotensin II reception...So its hard to really conclude that Losartan helps because of nitric oxide bioavailability. medications like losartan also act on cerebral autoregulation.

[Clairefmartin]

I agree with Lenna...I'm on Losartan, too, which decreases Renin/Aldosterone production in the kidneys and adrenal cortex to decrease vasoconstriction, and I have symptoms of hyper/ low flow and high flow, so where do I fit into this weirdness One minute I'm an ice cube, and freezing and the next, I'm on fire and sweating/flushing. Very rarely do I feel normal, temperature wise. I'm thinking it's my hypothalmus.... I'm way past menopause, so I can't explain it away with that, as I used to think, to understand all of this!! In fact right now, my right hand is cold and my left hand is hot, and I'm typing

That may be PD POTS - which I have heard is like bi-POTS, with the swings? Anyone else heard of this? It was mentioned in another group, many of the teens are diagnosed with it, which makes me believe it may be hormone related?

[bellgirl]

I agree with Lenna...I'm on Losartan, too, which decreases Renin/Aldosterone production in the kidneys and adrenal cortex to decrease vasoconstriction, and I have symptoms of hyper/ low flow and high flow, so where do I fit into this weirdness One minute I'm an ice cube, and freezing and the next, I'm on fire and sweating/flushing. Very rarely do I feel normal, temperature wise. I'm thinking it's my hypothalmus.... I'm way past menopause, so I can't explain it away with that, as I used to think, to understand all of this!! In fact right now, my right hand is cold and my left hand is hot, and I'm typing

That may be PD POTS - which I have heard is like bi-POTS, with the swings? Anyone else heard of this? It was mentioned in another group, many of the teens are diagnosed with it, which makes me believe it may be hormone related?

But I am past menopause, and I don't take estrogen, so now I'm really confused. I suppose it's just the dysautonomia, and sometimes it doesn't make sense?! Help...the more I learn, the less I know

[ramakentesh]

PD POTS is a another word for neuropathic POTS - peripheral dysautonomia or partial dysautonomia. Its guessing that neuropathy is the problem in a large group of patients.

There is also inappropriate sinus tachycardia.

[Clairefmartin]

Thanks Rama!

[bellgirl]

Thanks, Rama....now to look up neuropathic POTS...

[Trach]

Sorry, I need to learn how to type!

Regarding POTS and beta2 adrenergic receptor, Dr. Blitshteyn refers to an article by Jacob G, Garland EM, Costa F et al. Beta2-andrenoceptor genotype and function affect hemodynamic profile heterogeneity in postural tachycardia syndrome. Hypertension 2006; 47:421-427

Regarding POTS and NO she cited two articles:

1). Meadow, Minson, Stewart. Decreased Microvascular Nitric Oxide-Dependent Vasodilation in POTS. Circulation 2005;112:2611-2618

2). Garland, Winker, Williams et al. Endothelial NO Synthase Polymorphisms and POTS. Hypertension 2005;46:1103-1110

Per Dr. Blitshteyn "Nitic oxide, a molecule that regulates many physiologic processes, including vasodilatation, has been studied as a possible culprit in patients with POTS. In addition to causing vasodilation in blood vessels, nitric oxide also modulates the release of norepinephrine from the skeletal muscles and the heart and regulates blood flow to the brain. Circulating nitric oxide is synthesized primarily by an enzyme called endothelial nitric oxide synthase (eNOS). In one study, researchers found that certain variants (genotypes) of eNOS occurred less frequently in patients with POTS compared to the control group. In addition, it has been suggested that elevated levels of eNOS contribute to the development of POTS, but more studies are needed to explore the role of eNOS and nitric oxide in POTS"