BJD

Thanks for the responses. I have not seen an electrophysiologist. In fact, I've never even heard of that specialty. So thanks for the tip. I'll look into this a bit more. I've had so many tests done and have been searching for a diagnosis for this thing for over 15 years. If anyone has any ideas as to what else I should look into I would be most grateful. I wouldn't consider this medical advice, just areas to investigate. I've been searching for an answer for too long to panic over possible hypothetical causes, so please don't worry about causing me any anxiety with your suggestions. My symptoms are brain fog and mental fatigue, especially after exercise. But I usually do fine while I'm exercising. Overall, I seem to do better on a high carb diet, and a low carb diet leaves me feeling run down. I've looked into hypoglycemia, mitochondrial disease, and all of the other standard stuff and all of my tests have come back normal. Thanks again for any and all suggestions.

Hi Everyone: Sorry it's been so long. Thanks for all of your encouraging posts. There were several delays in taking the TTT. But it came back normal so not sure where that leaves me. Loading with salt and water does seem to help me, so right now some form of Dysautonomia is my only real lead on this crazy condition I have. I bought a BP monitor and have been doing some half-*ssed measurements with it. Most of the time it's been just under the 180/20 range. But today I took the following readings, all withing the same twenty minutes. I would really appreciate any advice or opinions on this. I'll keep in mind that most of us aren't doctors. Thanks! Sitting 100/70 Standing 137/84 Sitting 109/76 Standing 119/67 Laying 114/72 Sitting 112/81 Standing 102/68

Thanks for the replies! I have a lot of different symptoms, but mainly brain fog which becomes severe after moderate exercise and can last as long as 3 days, making it extremely difficult to function. I've noticed that hydration and cutting out dairy helps a lot, so that's why I'm thinking it's in this family of conditions. I was symptomatic during my initial visit to the doctor, but I was feeling pretty good when I took the TTT. Sorry, I don't have the results here to tell you what they were, but they did measure my heart rate. I'm open to taking another, but I still haven't paid of the first one yet. These things are expensive! Are there one or two doctors in the US who are considered the best for these things? I'm more than willing to travel.

I saw a non-POTS Dr. a while back for the unusal symptoms I've had for the last 15 or so years (exercise intolerance, brain fog among others. He did a laying/sitting/standing BP test that seemed to indicate POTS and he recommended a tilt table test. The ttt came back negative so I dismissed POTS as possible cause. But the more time that passes, the more my symptoms seem to indicate some form of POTS/Dysautonomia. Are there any other tests that could possibly diagnose these conditions? Thanks in advance for your help!

Thanks for the info everyone! I have my test on Monday and I'll let you know how it goes!

Hello: I have my first TTT coming up and have a few questions. Thanks in advance for any help. 1) I have been loading with salt/water lately and feeling much better. Should I decondtion myself so that I get an accurate reading on the test or will this not matter?* 2) What can I expect from the test? Is it really awful? * I have done the laying/sittiing/standing BP test twice. Once when I was feeling great and once when I had minor symptoms. The time I felt good my BP did not drop. When I had symptoms it did drop. I want to make sure the TTT shows any abnormalities so I can move forward with treatment. Thanks again!

Thanks so much for the welcomes and replies. It's definitely no fun having this condition, but since the challenge has been finding out exactly what I was afflicted, I'm happy to at least be circling the cause. I'm hoping that it can only get better with treatment and information. OK, another question, What eactly is Autonomic testing? Mayo in AZ sounds great. I should mention that I'd be willing to go pretty much anywhere for the right doctor/clinic, so proximity isn't an issue, although maybe it should be in the event I'll need to make repeat visits. Anyway is there anywhere that stands out above the rest or are there several that are considered at the top? Thanks again!

Hello Everyone: I'm new here and seeking any wisdom you might be willing to offer. I'm 41 and have been suffering from a condition for at least the last 15 years. Symptoms include fatigue, brain fog, and exercise intolerance. I have not yet had a tilt table test (but will soon), but at a recent Dr. visit, the doc administered the lay down/sit/stand blood pressure test and my blood pressure dropped when I stood. I don't seem to have it as bad as a lot of folks but it seems to be getting worse. I'm trying to stay optimistic and am looking for any advice on how to deal with the condition. Does anyone have similar symptoms to mine that might have some tips other than the salt/water load (which does help)? How often do folks discover the underlying cause of this conditon? If the cause is discovered, can it lead to a greater reduction of symptoms? Who is/are the best doctor(s) in the country at treating symptoms like mine. I live in Southern California but would be willing to travel. Is the Mayo Clinic considered the top place? Sorry for all the questions. Thanks in advance for any advice you might be willing to offer.