kayjay

Ok- I pulled it up and it's actually not research. It must just be what he recommends for his patients. Mayo and Vandy suggestions are researched based. Sorry again for the Hijack Sarah!

Maia- could you try to pm me the link also? I can't pull it up. I'm very curious how he conducted his research and how many subjects he used. Thank you!

I completely understand that you should do what is best for you. I'm not a patient of dr Grubb's - so I wouldn't follow his recommendations. My doctor's would disagree with him. I didn't want someone here to put themselves in danger. Low serum sodium will can be harmful for a normal person- many hyper pots would at least end up in the hospital. I'm not sure that any other pots doctor would agree with Grubb. I can't pull up the article but I believe that it says what you are reporting. Very dangerous IMO. It's really easy to do a 24hr urine collection to check sodium levels. I'm a hyper salt loading pots patient. Interestingly a few days ago I was reading about how in general low salt diets are dangerous for people's hearts. Of course salt loading doesn't mean "eat McDonalds".

Additionally my son had high blood pressure due to a kidney issue. His nephrologist is top notch and told me that the idea that sodium raises blood pressure is generally not true. Even if it does raise it - we are talking about 1 points or so. Not clinically significant. I know that there are health conditions (ie. excessive water retention) that may be helped by reduced sodium. Not a good idea for us! Sorry I posted twice, but this scared me. I don't want someone assuming that they should cut out salt. High salt lowers improves my hr and Bp- Im a "very" hyper- potsy who spikes high blood pressures.

I'm going to disagree on the hyper pots- salt thing. High salt does not = high blood pressure. It's much more complex. I'm sure if you have certain kidney problems or edema you should check with your doctor about limiting salt. It's not a good idea for hyper pots people. Mayo clinic checks urine sodium levels. I was told to drink no more than 50% plain water. V8 etc.It pretty common for us to be thirsty and drink a lot. Dehydration and low blood volume can be an issue for us as well. Sodium can help your body stay hydrated. Not getting enough electrolytes can be dangerous.

Actually the reverse is true. I have false positive pheo tests with a 24 hour urine... every time. The plasma test is more specific and accurate. It should be NOT be a single blood draw. A doctor who knows what they are going will take a baseline after you are set sing in a dark quiet room. Then you are permitted to walk around or sit up for about 10min. The second draw is compared to the first. Thankfully it's a small amount of blood

I think that Mayo migh be a better choice for you. Vanderbilt is looking for patients that "fit" for their research. Mayo will treat you. It took me 2 1/2 or 3 months to get it the first time so if you are interested you might want to make an appointment. For me it was very helpful to see an interdisciplinary team.

Psalm- I also have had aching in my hands in particular. Before I was even diagnosed I told my mom that I thought I might have arthritis (I don't). I would wake up with my hands hurting and even dreamt that I was banging on the piano until I injured my hands.

I do have fibro- I no longer treat the pain with meds. I've been on lyrica and cymbalta. They both helped but I don't want to deal with additional side effects. The pain isn't unbearable to me, but it seems to me a changing/ increasing symptom. I guess I'll call mayo this week and see what they say. I had qsart test(s) done there but I didn't really care about the results at the time Thank you!

How about Dr. Svetiana Blitsheyn? She can't be far from you. Williamsville New York? I think she was originally connected to mayo Rochester somehow.

Oops- I never fully answered. I go less than once a year. Three trips so far. They are really good about calling me back with questions. I don't bother them with little stuff though. They also seem to communicate well with my local general internist.

Sarah- I see Dr. Fealy. I went in 2009 for 5 days and had a full work up though the pots clinic. I can't say enough good things about Mayo. I was told by an expert at Hopkins that he was sure that I had a pheo- it was just to small to find. I was a lab rat for dr. Pacak at NIH for a week. I'm pretty sure I've had more radiation than any human should ( I test positive for pheos with the 24 hour urine so I'm guessing that I'm pretty hyper. I'm not trying to be coy about my blood pressures but I try not to think about it. I get lows and highs. I think I've been 210/ 160 or 170. I seriously try to block it out Today I was 98/64 and 142/100. Usually I don't take it but I'm feeling a bit breathless. Generally speaking my systolic is 110-140 and my diastolic is 60-90. It bottoms out when I'm sleeping. Do you mind sharing your numbers? I 100% recommend mayo rochester. I actually am puzzled when I read negative comments about the place.

I also was sent to NIH for a "pheochromacytoma". I go to mayo clinic Rochester now- they didn't misdiagnose me, Johns Hopkins did. Anywho... I would not sleep without Ambien. I prefer the controlled release. I also take 6mgs of melatonin. I was on klonopin for a few years and that helped me sleep at first but it got to the point where it didn't work.

I have hyper pots. I'm exhausted! It interferes with sleep in a big way. Years of interrupted sleep makes you very tired.

Thank you Janet. I also had a reynaulds diagnosis. This is almost an opposite problem. I just went back to mayo Rochester on February and it wasn't an issue at the time. I'm not sure about the erythermyalgia because there is not swelling. I will have to look for color changes. Agreeky- it certainly could be neuropathy.

Thanks for responding Tinks! I'm not sure what it is. I've always had really cold hands and feet. Now I have episodic burning that is painful enough to wake me up.

I have had pain and burning in my hands and feet. My family can feel that the skin is actually warm. I've always had very cold hands and feet. Anyone else struggle with this? It's getting worse

I rarely hallucinate tastes but I do imagine smells. It's often something such as cigarette smoke. I have I imagined sounds as well.

I take provigil- I'm finding it very helpful. I take 1/2 a "normal" dose. I'm sorry about the brain fog. I can totally relate.

I used to think that klonopin was helpful- but I'm glad to be off of it now. It can increase dizziness. I felt that it really interfered with my short term memory. I was put on klonopin because and er doctor gave me Ativan and it was changed to klonopin by another doctor. I wouldn't take it again. I have also been on atenolol but i was misdiagnosed with a pheochomacytoma- so I may have been on too much. I take nadolol and I cut pills in 1/4's

I wonder if any of the people in the above video have hyper pots? I can bike, swim, and exercise moderately. Any intense type of exercise increases my adrenalin and is very problematic for me. I'm a very type "a" person and have had relearn the hard way that pushing myself too hard physically causes a flare is symptoms- particularly high blood pressure.

"Normal" People that are severely deconditioned or have been on extended bed rest have Orthostatic Intolerance. I didn't find this article offensive. What makes most of us different is that we have something else causing our Orthostatic intolerance. Dehydration will also cause pots. IMO it's important not to ignore the facts. Deconditiong causes Orthostatic intolerance. I'm happy for people that are deconditioned who can get better with exercise. I tend to think of what I have as dysautonomia anyway. The Orthostatic intolerance and tachycardia are just symptoms really. Mayo clinic diagnosed me in 2009. I've made 3 trips total. They suggested exercises that would be safe for me. They never suggested that deconditioning caused my pots.

I have had low Bp after getting out of a pool. I feel really good in the water though. I haven't experienced what you are dealing with. Swimming has been good for me. I hope you are able to try again. I don't swim laps. I have taken swim exercise classes though. I have a few thoughts. Is is possible that the water is too warm? I swim in colder water. Even in the winter I swim in the "cold" indoor pool. What you described is similar to how I felt (before I was diagnosed) after getting into a hot tub. Cold water doesn't feel as comfortable but I know it's better for me. Also could you be over exercising? When I first started water exercise I made myself sick by overdoing it. It felt so good to be in the water I didn't realize how much exercise I was getting. Over exertion make me very sick.

An expert nephrologist told me that the idea that salt raises blood pressure is essentially being disproven- it's more complicated than perviously thought. I only mention this because I have hyper pots (with high blood pressures) and still was told to increase my salt consumption. Salt does seem to help me retain fluid so I suspect that that is helpful. Increasing salt has not raised my blood pressure at all. I think it has lowered it only because when I retain more water its possible that my adrenals surges are lessened. I was told to not drink more than 50% plain water. I salt my food when I remember also. It not something I keep track of though.

In my opinion it seems to not make my pots any better or any worse. It does however help with my CFS. I usually don't take naps anymore. I lay down and rest but I don't actually sleep. I'm away with my family at the moment but when I get home I'm going to skip it for a day or two to see if its helping me. I took nuvigil and had a major anxiety episode. Most likely it was a coincidence but I'm afraid of it so I just stick with the provigil. It seems to help me a lot with brain fog. The second time I took it I actually had a conversation with my kid's school nurse. I did not embarrass myself and didn't have word recall issues- I was standing up and articulate. It has been a positive experience so far but I'm leery of drugs due to past reactions.