RichGotsPots

I just barely make the diagnosis of hyperadrenic pots with NE of 634, my BP does up when upright about 20+ then after 5 minutes drops over 50. Probably that qualifies me, but I don't flush except for my chest. I don't know if you can call that MCAS, but I do know if I had MCAS the usually meds don't help in the least. H1, H2 and Singulair all don't help in the least. Some thing is causing my pooling. I personally thing the likely culprit is dysfunctional endothelium cells that are causing an exaggerated release of NO in my chest or lungs. They know that in pulmonary hypertension there isn't enough release of NO and thus a build of pressure occurs. They either pump NO all day continuously into the pulmonary artery or they use endothelium receptor blockers. Probably if I tried one and my symptoms got worse I would have my answer, but it would probably be pretty scary..

Me too, I've done martial arts and all different sports and have done hours of stretching but everyday boom my flexibility doesn't budge and inch

I don't know where you heard that Mito Docs tell their patients all POTS is mito disease. I'm trying to get in to one of the top Mito Docs right now at Columbia Presbyterian and he is making it very hard because he doesn't feel they are related at all. Plus I read the same thing on the Mito association website. I have to send him my records that show an unusually fast metabolic acidosis response to exercise.. Also Grubb is mistaken about Histamine's. Allergies release histamines. Mast Cell regulate histamines but the issue isn't with histamines that's why no one I know with MCAS has IgE levels that are high..

Dr. Grubb said 12 of the 2,000 POTS patients he and a colleague see every year. Also he isn't saying that ONLY Hyperadrenic POTS people have MCAS. He didn't say out of the other 90% who else has MCAS. Also Dr Afrin, says it's very hard to diagnose MCAS, the trick is to catch it during an episode and have a proper test taking right away and put on ice to a proper lab... All and all not easy to diagnose. Every Dr. Grubb says in this video that sometimes it's just a diagnosis by exclusion. Which also makes me wonder. We could basically call it a dozen other things by exclusion too lol

I'll say it a little more in easier terms. PulseOx check our blood oxygen level at our fingers and if we pool and the blood goes to our hands and feet the Oxygen level with be okay. But even on a breathing end tidal oxygen measurement we are okay. People with pulmonary hypertension actually have low levels of oxygen even though they have this pressure build up of blood in their lungs. So if we have the opposite, and have low pressure then our oxygen will be fine..

Well so far I took plain old L- Carnitine as much as 2000 mg and it doesnt give me a tiny bit of energy..

I saw this in a study just now "norepinephrine content were completely prevented by α-lipoic acid or by L-acetyl carnitine administrations in diabetic cardiomyopathy" interesting it has an effect on blocking Norepi..

Yes on the SOB after eating. Mainly dry things like carbs. For some reason beans or meat don't seem to have this affect..

One of the healthiest things to juice is sunflower sprouts, they are also awesome in salads, yummm

Hi Doozy, I tried Singulair and I really couldnt see a difference but there are two other ones Zyflo and one other and they are both more expensive and work in a different way. I heard they both work better but docs prescribe singulair because of the cost..

Mcblonde, if your CO2 levels go up that's for sure not what dr stewart is describing..

Which anti-leukotriene are u taking?

My question is, that if we know that some surgeries are making pots worse or even causing it, do we have any research as to what about these surgeries causes this reaction? It's a known fact and I would think the obvious place to investigate would be the areas of the surgery....

They use Ringer's for dehydration because it's like pedialite in IV form. The glucose helps it absorbe better.... If I have to go to the ER again I'm going to ask for it instead of IV saline..

Well, I don't fit neatly into either Hyper or Neuro. I have the some what raised level of NE and on head up tilt my systolic BP rises 15-20mmHg but I also always have delayed Orthostatic Hypotension. And it was 1st seen on a exercise testing then again after 6 minutes of head up tilting.. The bottom line is all POTS testing to date besides the TTT to diagnose is not conclusive enough to confirm anything. I don't even think Daxor is that reliable for volume testing to be honest and my pots specialist told me that its his belief as well.. Adjustingmysails- I don't believe 10% is the right number for Hyper POTS, I believe it is much higher. I also believe that is people don't have high levels of NE they still might be overly sensitive to it. Most people I've talked to have had many adrenic storms, yet tons of them are not diagnosed with HyperPOTS...

Its my understanding that NE causes BP to go higher, but what I've figured out is that some of us have varying levels of pooling and depending on that level of pooling that can lower our BP. In many cases like mine that pooling kicks in after 5+ minutes so it's delayed. So that I have hyperadrenic with poolings.

Well I'm sure adding salt or IV saline (salt water) is the answer if it is true hypovolemia. On the other hand even with tests like Daxor, I'm not convinced of the validity of that test. No doubt we have signs of dehydration, like thirst, fatigue and tachy, but it might be something slightly different than anyone can explain yet... If it was straight up dehydration then salt or water, or saltwater would not help that much. The two above treatments are better options. They used to give IV Saline for diarrhea but it was much less effective..

Thank you Corina. I promise that even if I find a treatment that helps only me, I will forever try to help everyone afflicted with this horrid illness! We will find a cure or at least a group of treatments that will help everyone one day... Even if this or any other treatment I find doesn't help me I am hopeful that if it just help one out of a million, then that will make it worth while

Corina- based on what you said I would answer Yes to blood pooling, because the question doesn't ask how you blood pool or when. As far as hypo and delayed hypo, you can check both of those answers... And for subsets you can either say you suspect for have none of the above...

So that sounds exactly like mine. What meds did they prescribe?

Are you sure it isn't from the medicines you are on?

It's not vain but you are right, what good are they if you are disabled and in bed and can't show them off lol As a guy I've always noticed that what ever shortcoming a girl/woman may think she has, G-d has always managed to make up for it with another attractive attribute. Learn to love that other attribute and he how attracts guys and you wont worry so much about the one you think is not so perfect...

What's a D&C?

Corina, what was that surgery for if you dont mind me asking?

I had the worst throat pain from tonsillitis, about 2 years after I first got POTS and my POTS was somewhat in remission. I remember the pain was worse than any of the many streph throats I have had. The Dr. tried one strong antibiotic and it didnt work, then he tried a really strong one and it finally worked. But I had to gargle with Yogi throat tea, us clorisptic throat spray 5x/day (tasted awful) and I ate spoons of honey and some other things. Thank G-d it healed... Hope you dont need the surgery..