RichGotsPots

I don't think any researcher to-date has ever had any clinical evidence of NO deficiency. My theory which I stated last year and which has evolved over the past year is that we have NO dysfuction, stemming from Endothelium tissue damage. We have 4 tissue layers in our body Muscle, Nerve, Connective and Endothelium. Endothelium tissue regulate NO and there are much more neurotransmitters involved in activating the endo release it as well... Further I think the damage is not necessarily in every organ for all of us. Depending on were the main damage is, that's how our main symptoms manifest. This also can mean there is too much NO in one are and not enough, basically our NO is off balance in certain organs.. There dose seem to be more people who would have too high NO overall than have too little, but it depends on a lot of things. Well it's complex and if I were supplement, it might help one area but bother the rest of the body that's normal or high... For example people with pulmonary hypertension maybe have normal BP but only in their lungs they have high BP. So if you gave them supplements if would bring down their normal systemic BP too low. So with Pulmonary hypertension they pipe pure NO directly to patients lungs all day long. No has a very short half life...

I found this about Mestinon and Mito disease. They say mestinon is not good for Mtio issues: http://www.ncbi.nlm.nih.gov/pubmed/8812728

Comes down to what is the auto-immune damaging, I vote for endothelium tissue damage..

Rama, good info. I think it's not the NET affect it's the anti-inflammatory/auto-immune/anti-viral

Not all licorice has licorice root in it, most European brands do, just have to read the label of ingredients..

predisone didn't help at all and hard to kick

Stretching helps my pots breathing some. Maybe to so with connective tissue issues..

Which meds do you think are a risk?

has it helped anyone breathing issues?

i didnt read everyone's comments so i might be repeating what they said. But Midodrine simple raises BP by constricting blood vessels. The problem is does it for blood vessels everywhere. So ppl get pressure feelings in their head. Also it does it all the time in any position. I am thinking of trying it but I heard much better things about Mestinon, which does the same thing but from one study they said it only raises BP mainly when standing and not laying down.. But it has it's own side effects too.. For either I would ask your doctor to make sure you're not hyperadrenic too. I have high BP and low BP and it's hard to tell unless you get a through testing, even while walking on a treadmill..

Many ppl are uncomfortable with waist high andf abdominal binders. I strongly recommend CEP compression thigh sleeves and for a lot of activity both the thigh sleeves and compression socks. I'm not a fan of Juzo. My specialist tried to sell them to me for $75. I get mine on amazon for half that..

The scarriest for me was when my POTS was at it's worst then I got a staph infection followed by Pneumonia. Thought I was a goner. But every day i feel like a delicate leaf that if you shake me I will crumble :'(

wow a spinal tap for pots, that's a new one for me :-o

Kim I recommend you find a Rheumy show specialies in Sjogren's the Sjogren foundation has support groups for every state and you can ask them for a local doc recommendation or PM with your city and state and I'll find one for you..

Spinner, you can choose more than one answer..

I'll keep posting relevant info, but it's late so just want to get the Poll up for now...

Anyone get tested for Sjogren's with a lip Biopsy?

40-50% of people with Sjogren's test negative for ANA or any blood tests, only lip biopsy is 100%

http://forums.dinet.org/index.php?/topic/21093-has-anyone-ever-noticed-they-have-a-wide-pulse-pressure-or-narrow-one-also-possible-reason-for-pots/page__hl__%2Bwide+%2Bpulse__fromsearch__1

Issie where did you find out about what increases NO and what decreases it? Would be good to have a list. I take alpha lipoic to help with possible mito and lactate issues. I take B12 for energy.. None make a huge impact on me that is immediate..

what else can i take to increase blood volume then?

well Florinef isn't working so i figured I would try it to expand my blood volume

Okay, someone told me on facebook, its called a respiratory sinus arrhythmia and its natural and better the more it does up and down

Is it a Vasovagal problem if when I inhale my heart rate goes up as much as 10 beats/min and then when I exhale it goes back down 10 beats?

Just looking for experiences. I've been on Florinef for over a month. 1 week on .2mg and I don't even see the slightest difference. So I'm looking to trial my third POTS med. Thinking about Midodrine or this..