Any Advice?

[BJD]

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.

[issie]

Not sure if Mayo is the top place. But, it's probably the closest place to you. Many of us really like the Mayo in AZ and have gotten lots of our questions answered. At the very least you could have your autonomic function testing there. You would know more what you're dealing with. It's coming up on hot here in Phoenix and it is easier to get in when the weather is scorching. I think Dr. Goodman is pretty booked up - but, he is the one to see at Mayo. He will then send you to whomever else he feels you need to see for further testing.

Sorry, you are having to join us - but, it's a good bunch of people and you will start to find lots of answers. You can do a search on past conversations and pull up lots of info on questions you may have in regards to things we've discussed.

Issie

[corina]

Welcome to the forum BJD!

[jpjd59]

BJD:

Stanford also has autonomic function testing now (Dr. Jaradeh is their neuorologist who specializes in POTS).

[margiebee]

You sound pretty similar to me symptom-wise from what I can see, along with salt loading and hydration I use compression stockings. Not everyone likes them but I am a huge fan. I also have begun doing light, non-cardio exercise to strengthen my legs which seems to be helping some.

As far as the underlying cause, I think that's kind of a blurry area because they can tell you that you have POTS from the TTT, and they can do further testing to determine the type (I'm going in for that bit soon). But from what I know you can't really dig much deeper to find out why this has happened to you, as much as I'd like to sometimes. I'm still new to this as well though so I'm not 100% sure of course.

[BJD]

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!