RichGotsPots

Simple carbs, sugar and caffeine.

Dr. Grubb scratches the surface. His clinic at least tries to subdivide a little, but we really need to pool our own resources until they start taking Dysautonomia seriously. We need to have polls for where all members weigh in and say what type of Dyautonomia they have, and then divide those groups into what types of meds and treatments they've been given or tried on their own and the level of success.That info is on here but would take forever to compile since it's all over the place. It it was combined it would be a powerful tool for everyone.. Not as perfect as clinical research but a really good start..

On Wikipedia it says "As with other NSAIDs, ibuprofen may be useful in the treatment of severe orthostatic hypotension (low blood pressure when standing up)"

I guess i wasn't educated on NSAIDs that much when i made this post. I just researched a little and now I realize that Asprin is really the only blood thinner out of the bunch. There are tons that aren't Salicylates too. Maybe I can tolerate them better than I do Asprin. hmmmm.. Salicylates Aspirin (acetylsalicylic acid) Diflunisal Salsalate As for blood thinners/anticoagulant- I'm wondering if what affect they have on hypovolemia or blood pooling if any. it would seem like they would make it easy for blood to pool if it was thinner.. but not like i want the opposite, clotted blood either...

Sue and Naomi, try juicing veggies for extra calcuim. Kale has a ton, if you juice it or steam it..

Did you get a response? I wrote Dr Yates to ask him what respiratory disturbances he had seen with it..

Hi everyone, just wanted to know what everyone's reaction to blood thinners were. Ever since my 1st POTS flare in 2006, I've been sensitive to Asprin. Not sure if it is because it is a blood thinner. There is somethine called the Asprin Triad that I have. Means I got allergies, nasal polyps and Asprin sensitivity. Asprin gives me really bad chills.. I've never tried any other NSAID or blood thinner. But there is an interesting diet for people with Asprin sensitivity called the Feingold diet and they say Asprin like compounds in foods cause tons of problems for half the world... Even Mayo has info on the diet... Hope to here everyone's experiences..

I've been on all doses of Prednisone for the last 4 months, how does that play a role in your theory?

also a possibility is a type of postural silent reflux

Yes! I don't know what got into me to do both. I know better. You would think after 9 years I would have learned wouldn't you?! Must have been the bath. Heat is a vasodialator.Also it can dehydrate by raising our temperature... I stopped taking warm showers and baths..

Time for an update: My High Resolution CT scan came back normal so I have no lung scarring, phew! I also had a VQ/Perfusion Lung Scan, which checks for clots and that came back normal too. I'm a little disappointed that the VQ/Perfusion wasn't done in stand position as well to see the difference... I had my POTS cardio doc check do 2 echocardiograms, one laying flat (the normal way) and one tilted upright. My pulmonary pressure was normal 30 and on tilt is went down to 18. A Harvard specialist told me that's very normal. I'm scheduled to see one of the best Pulmonary Hypertension/cardiologist in the country, in March. I'm probably going to get a right heart catheter and be tested during exercise and standing. The only thing the echo found was I had a pericardial effusion. I looked it up and it can cause some major breathing issues. Only thing is I had an echo in the hospital 2 months prior and dint have that, so I dont think that's the issue, but the specialist can check it again. I have been paying closer attention to what my breathing problem feels like. It feels like a balloon is inflating under my sternum creating pressure. I'm looking into unilateral pulmonary hypoperfusion as the cause since so much blood augments way from our thorax area. I'm still on prednisone 10 mg so I haven't done a PFT, but i have one scheduled next week and then the week after a cardio pulmonary exercise test. I got a new apartment in hopefully this new environment will help after 1 or 2 months because my POTS flare was triggered by my old one, I think.. Also I'm wondering if my pressure feeling is related to deep mucus and is some kid of response to dehydration and pooling... Rich

While it's interesting the 2 research studies found that patients with SOB tend to have high tachycardia, when I have shortness of breath it is not related to high tachycardia. My doctor thought it was tachycardia causing SOB and prescribed valium to reduce my resting heart rate. Valium reduced my resting heart rate from 85 to 70, I got even worse shortness of breath, and nearly passed out! He then realised my SOB had nothing to do with tachycardia. When I have had episodes of very fast resting HR I have ALSO felt short of breath. But the SOB I am talking about that happens normally and on a daily basis for me is something completely different to the type that is related to high tachycardia. Lotus, be very careful in taking sedatives like Valium, they relax us and our anxiety but they can relax us too much and we can get a side effect called respiratory depression (hypoventilation) If we had hyperventilation like some research suggests hypoventilation might actually help but as you noted it doesn't.. Have you tried beta-blockers to slow your heart yet? I haven't out of fear I also have asthma...

Too bad there isn't such a thing as continuous IV fluid. I still want a ZOE fluid monitor, then i can watch all day as it fluctuates..

how do you know who to trust for TCM, is there a governing body or degree?

Even if I do I'm not sure I'd do it because of fear of rejecting it and having my breathing issues

I agree with Rama here, my POTS doctor actually dissed forum sites, so I wouldn't even mention it. I show other doctors info and sometimes I get a decent response jst to educate them about POTS. But the specialists dont want to hear it. What we really need is to get the specialist together, to form a professional dysautonomia university. To have a dysautonomia medical journal published. Get the experts motivated...

There are some instances where POTS is secondary to hormonal/endocrine abnomalities or you can say they mimic them..

lol yup, I tried to get him to take me as a patient last week but he won't because he's a pediatric doc. And the NYU autonomic lab doesn't take any insurance at all and is $1500 or something for the 1st visit, ugh

agreed

I had my POTS doc do this test and he used a machine called a BioZ but he barely knew how to read the results only that cardiac output went down on standing. I wish on top of the research for this they would point out some meds to try for this and success rates. I've seen that info on Dr. Grubb's studies.. Just not in this area..

Anything I should have my nephrologist test for that vandy is looking for?

But after you left and got better did you ever have a flare like that again?

This 4th video shows that the thorax does down 30% while the splanchnic area goes up 30%. This has to be contributing to my pulmonary problems.

I know this is an old post but I'm very nervous about my cortisol because I 1st got IV prednisone in the hospital in Oct 2011 and now I can't get off of it I'm down to 10mg but I feel like my breathing gets worse the lower I go what a nightmare on top of a nightmare

Interesting video from POTS researcher I'm wondering now if our hypoperfusion is responsible for our symptoms rather than regional blood pressure that I once thought or maybe both.. Only problem is that my main symptom is breathing problems as many already know and there is hardly any research of pulmonary hypoperfusion except in infants. But there is some research on cerebral hypoperfusion, for those of you have have cerebral symptoms...