RichGotsPots

http://naca.larc.nasa.gov/search.jsp?R=20090038968&qs=Ns%3DLoaded-Date%7C1%26N%3D4294755463%26Nn%3D4294915757%257CSubject%2BTerms%257CBED%2BREST I think you'll find this cool, interesting and informative. They actually induce hypovolemia and do extensive testing to figure out how to combat OI in astronauts

I wonder if it can cause Addison, because I know prolonged use of Prednisone can. All the docs tell me they are different still I'd like to know. That's why they put people on prednisone for life too..

Posting the poll tomorrow so last chance..

That is a skin condition, it's a different form of polymyositis, 'm just looking for lung things..

Stairs are a huge no no for me. When I had a huge POTS flare in October I lived in a 3rd floor walk up. Before the flare I could run up the stairs with no problem. After the flare I needed to walk up with a folding chair to sit at every landing (every 8 steps) Took me 20 minutes to get up stairs. I was a prisoner. Thank G-d I moved to a 1st floor apt. Now I go out everyday. My shortness of breath walking up stairs is just scary. My theory of the cause is that it increases the blood pooling and the blood pooling weakens the energy and/or hydration. Maybe it is a metabolic issue for people who have pooling away from the the chest area. HR going faster maybe causes more energy burn which makes it worse. I read somewhere that Dr. Grubb said POTS people use 3x as much energy as regular people. Anyway I'm digging it my theory by going to see a neuro-muscular specialist soon.. Also I think the people with confirmed Mito problems have already found part of the answer.. Too bad Mito problems don't have great treatment remedies...

I'm going to make a big poll on what breathing problems people have and what treatments help them the most. Before I do that i want everyone's input. What type of breathing problems should I poll? And What treatments should I list in my poll so I don't leave any out? Thanks! Rich

I found the name of his doctor and I might try to email her for some answers, not on him but in general. It says in the article I posted he had shortness of breath too but in all of his TV interviews I've seen and in his People Magazine interview he just says he had tons of fatigue after shows that he wouldn't want to talk to anyone after them and he also felt dizzy a lot and that the final straw to quit was he fainted while talking to a 5 year old fan. He said he didn't want to faint on stage and scare all the kids. I saw a knew promo video he did were he is dancing and wow I wish I could do all that without symptoms. Really really wish he said what helped him...

Rama, I meant to PM you this. I read that he actually got better with the help of doctors at the hospital where his foundation raises money for. http://www.bakeridi.edu.au/support/greg_page_fund/ I was going to send this to you in hopes you live near by... But knowing you, you already know about it

I agree these are obscure, but most would agree that so is POTS lol. I just had an exercise test and gave to Pulm Dr. the study by Dr. Stewart and the exercise study showed no decrease in CO2, so I crossed that off my list. But to be honest neither Dr. Stewart or My Pulm measure CO2 in the best clinical way. They both measured exhaled CO2 levels (end tidal) but the most accurate way, if you ask any clinician, is to get a blood/gas measurement in an arterial blood draw. Regarding Tachycardia and breathing issues, I am constantly measuring my HR and my breathing problems are not triggered by a high rate nor are they rescued by a low HR. My Pulm Dr. said that most of the breathing chemo receptors are in the throat and there isn't any evidence it's causing my issues. Lastly, I wish we had some data on the % of people that had other primary conditions like Cancer and Diabetes that cause POTS. Some POTS people have Mito issues that they found out with a muscle biopsy, Is POTS secondary to that or co-existent? The extent to my breathing problem are so severe that I can't live without answers and if I have to do all the work and get doctors to rule it out so be it, I have no choice. Rama, just imagine you had all your symptoms but on top of them you couldn't breath and you had no rescue medication to help you. Roughly 4,000+ people die every year America from asthma and asthma people have many medications, I don't.. But would I do have is my ability to keep doing tests to get at the nature of this scary symptom. I'm not ruling out POTS as the main cause but I've never read or heard about metabolic abnormalities in POTS. Maybe it is normal, maybe it's normal for CFS, if that's the case it should say it somewhere..... I've also not read in any medical POTS literature how an POTS treatment has helped with breathing problems. I will do a poll on that soon..

Because my exercise test showed some metabolic abnormalities I'm starting to look things like lactate. I have an appt with a Neuro at the end of the month who specializes in ALS but also complex neuro muscular issue. Hope he does a muscle biop and I get some answers..

I know there is a few people on here from Maryland so just for their knowledge is there autonomic specialist at Hopkins besides Dr. Rowe, if so what are their names? Thanks

I agree that's great advice especial because he backs it up with the NASA study that shows bed rest reduces blood volume. But I wonder if it's the supine position and not actually the exercise. I do want to some day get to where I workout my legs. Meanwhile I'm glad I have the knee high compression socks

you can read his story here http://dynainc.org/about/news/2012/m/wiggler-crusader

I have this exact same thing for everything you mentioned. regarding eating it happens usually for me when I eat heavy or dry carbs. I do not believe its an allergy or celiac thing. I believe its a dehydrating thing/pooling thing. I have to eat small meals. It almost never happens with veggies unless I over eat. It also doesn't happen too often with proteins if they are well cooked and wet. Keep an eye out for a new poll I will post soon regarding breathing..

I posted this video not because for CFS info or Viral connection but because the research in this video is fascinating. Because some people with dysautonomia have CFS as well I thought this research might interest you. I believe the research in here explain a lot of my own symptoms. As i get more test and I watch these video I'm seeing some of my test results show up. For example my CD8 T cell test was high and no one made anything of it, but in this video there is a connection. My IgG is low which is where the immune connection is. Then my most recent test showed metabolism abnormalities and the doctor mentions that here too.. What do you think?

what most of you already I'm only starting to really understand, that is that POTS and CFS can overlap very closely. I'm learning a lot about my POTS from learning about CFS as well. Look out for another CFS related video too.

Interesting test he shows that blood volume is decreased with prolonged bed rest

Thanks Katie, I'm aware of Mito issues, there are also enzyme dysfunctions besides mito that also affect ATP. But my question is how would my Pulm doctor be able to test my abnormality using the exercise test? Thanks, Rich

Great webinar where he discuss CFS and a few dysautonomias

I don't get it can u explain it?

I made an appointment with a neuro that specializes with ALS and some neuro muscle things. They wanted me to fax some info and just told them my last doc thinks I had neuro muscle so they finally gave me an appointment... I hope he doesn't tell me he only handle ALS when I see him..

There are the three illnesses I'm targeting next on my hunt for the cause of my breathing problems. Does anyone have any experience with them and do you know what doctors would diagnose these? Thank you, Rich

How do you get diagnosed with EDS, I saw a Rheumi and she didn't test me for anything? I'm also not flexible at all, does that mean I don't have it?

also anyone have an idea what the doc meant by getting to the metabolic phase too quickly??

but what does the hypotension during exercise mean?