toddm1960

Just the way I reacted to turmeric leads me to believe I have very low NO levels. Guess it's worth getting checked.

We used impedance plethysmography to assess regional blood volume redistribution during upright tilt. Thoracic blood volume decreased while splanchnic, pelvic and leg blood volumes increased for all subjects during orthostasis, but were markedly lower than control for all POTS groups. The data demonstrate enhanced thoracic hypovolemia during upright tilt and confirm that POTS is related to inadequate cardiac venous return during orthostasis. This is just a section from Stewart's thoracic blood volume testing, he clearly calls it regional hypovolemia. Now does this mean POTS patients won't have total low blood volume (hypovolemia) some could. Now if we have cerebral and thoracic hypovolemia does our body know it's only regional? Or does it react just as if we have total low blood volume? I personaly have very narrow pluse pressure when I stand, and only when I stand, some days as low as 5.

I agree Rach these can be signs of mito, it's worth checking out.

Naomi funny how Dr. Stewart ordered this test for you, it was his research that shows we're all (high, normal and low flow POTS) thoracic and cerebral hypovolemic when we stand. I would say very few of us are always low of total blood volume, but if Dr. Stewart is ordering this type of test maybe I'm not understanding his research on hypovolemia.

Welcome in Lyn, sorry you had to find us......but glad you did.

Am I the only one a little scared they're pushing pacemakers for POTS? Maybe I'm off base but dysautonomia isn't a cardiac desease, and putting in a physical control on your heart when your autonomic nervous system is sending all the crazy signals....doesn't seem like a good idea. It might be helpful for some, but overall I don't think it sounds like the right way to go.

Just throwing this out, are some of us only hypovolemic when we pool? Either in our peripheries or splanchnic regions, so if we're tested laying down......we're normal. But when we stand, all bets are off.

The audio can be heard here: http://www.mitoaction.org/podcasts/dysautonomia-dr-boles

One other sign of hypovolemia is a narrowing pulse pressure, if your systolic and dialostic move closer together when you stand.........you might be hypovolemic.

I over constrict so I've been taking 1000mg of nacin each day, I flush so much on my own I haven't noticed any difference. I've been looking into other vasodialators, marinol has been one of interest. It raises NO and vasodialates, it'll be one I ask about at my next appointment. Sorry to take this tread off into a totaly different direction

In mice that lack the eNOS enzyme, exercise did not protect the heart from a coronary blockage, although these mice appeared to lack the ability to exercise as much as normal mice. Another molecule that appears to be important for the benefits of exercise is the beta-3-adrenergic receptor, which allows cells to respond to the hormones epinephrine and norepinephrine. All of the beneficial effects of voluntary exercise are lost in mice that are deficient in this receptor. I wonder if sub sets of us are missing similar enzymes or receptors that could be an underlying cause, or at least the reason treatments work for some and not others.

Dana I agree 100% with you

I have this same muscle weakness, and I call them wet noodle legs Be sure to ask the Mayo doctors about mito, it sounds like there's enough symptoms to check into it. Good luck with your visit and I hope you find the answers you're looking for.

That's the million dollar question, I've been trying for the past 6 years. I'm still at square one, even house work can cause a huge crash.

My treatment comes from the results of my cerebral spinal fluid testing and fresh tissue muscle biopsy: Leucovorin CoQ-10 (Q-Gel from Tiscon) Creatine L-Carnitine D-Ribose Riboflavin

I've had it all, fresh tissue muscle biopsy, mitochondrial genome, cerebral spinal fluid tested and genetic testing.

I list it in my signature. I was diagnosed with a fresh tissue muscle biopsy, my breakdowns are in complex 1 and 3. So I don't produce ATP at a normal rate. UMDF.org and mitoaction.org have a ton of information on sypmtoms and testing. Let's hope soon they have a cheap and fast swab DNA test for mito, I think many of us have this as an underling cause.

I've carried a CFS diagnosis for over 10 years, and I have all of those same symptoms you talk about. I didn't feel the diagnosis covered everything so I continued to push for more testing, and in 2009 tested possitive for POTS and mitochondrial disease. At least now no one can tell me it's all in my head IMO CFS will turn out to be a mitochondrial disorder. Good luck finding the answers you're looking for.

Naomi don't be afraid to give it try, even if it's something small. I need to give it another try myself, it's been about a month since my last go round and crash. I keep getting back up on the recumbent bike and giving it a try. Sometimes my first step is house work, I'll vacuum the livingroom and see how I feel. Baby steps are fine.....

Add me to the list, I take 400mg a day (I also take a B100 multi) for my mitochondrial disease. I haven't felt much difference, but I continue to take it.

My main concern is that bad science studies like these get to other doctors, and becomes more main stream. In no way shape or form should the only cause of POTS be a sedentary lifestyle, or a smal heart. It's ludicrous for anyone with basic knowledge of POTS to claim this, and worse yet he claims it and that he has a cure (all his words). I'll say it again, we all need to try exercise....it will help some and make others feel worse. It's no more than a treatment, and for him to claim if you're not cured you're not trying hard enough......well that's just over the top.

Sue1234, CindyLooWho is very disappointed you didn't remember her Yogini it's more than just the name, this guy is claiming to have cured POTS. He states this is the last line of his paper, he also states every person with POTS has a small heart. That's why people have to sign a contract binding them to silence about his program......no bad reports when the treatment doesn't cure them.

If you do a little research on this guy he started the "Whoville" study in 2006. It took him until 2011 to find 38 people to fit the conclusions he was looking for. Now this is cherry picking to the extrem. You also find with google search he planted people in his group as members of other forums, and they stir up the same mess they have here. This guy was also one of the doctors on the paper that set new definitions for POTS, NCS and not one word about small hearts or cures..........hum. The "whoville" study needs to be looked at as spam or an infomercial, just watch how many posts start popping up selling this crap.

If you read the study you'll see all 27 patients had smaller hearts, everyone one of them.....really? He says POTS is caused by inactivity.......really? He says there is no autonomic dysfunction in POTS patients, it's all caused by a smaller heart, exercise and increase the heart size.....and you cure POTS. All of his patients had orthostatic hypotension. Did you see the full conclusion:Conclusions Patients with POTS had a smaller heart coupled with reduced blood volume compared with healthy controls. We therefore propose the name the Grinch syndrome to focus on this pathophysiologic state. The marked orthostatic tachycardia in these patients seemed to be a physiologic compensatory response to a smaller stroke volume that was attributable to cardiac atrophy and hypovolemia. The func- tion of the autonomic nervous system was intact in POTS patients. Short-term exercise training increased cardiac size and mass and expanded blood and plasma volume, and thus improved or even cured POTS. These results suggest that POTS per se is indeed a consequence of deconditioning and that carefully prescribed exercise training can be used as an effective nondrug therapy for POTS patients. Look I'm not against people exercising, I've been trying for 6 years. Everyone needs to try everything, we're all so different some things will work for some of us, not help others at all and still hurt some. But you have to try. I wonder what this guy charges? He's starting to look like a Dr. Teitelbaum curing CFS.

FW did you get on potsrecovery.com and read the full version of this study? He's had a trial ongoing since Jan 2007, this co-hort seemed very hand picked. Some of his statements are out there.......way out there. I hate putting the website out here because it very much looks like an infomercial, but if you snoop around the site you can find a link to the whole study.