I Finally Saw The Specialist

[Bears Mommy]

I went to the specialist yesterday. My GP thought I had POTS, but the specialist said I absolutely do not. My weird diagnosis is vasovagal syncope, overlapping with Orthostatic hypotension, and of course Hypovolemia. The funny part is that the treatment is identical to POTS treatment. I have to salt load (2-3 grams of salt a day), consume 20 - 40oz of sports drinks a day, and he wants me to start Dr. Levine's protocol! He even wants me on a rowing machine. I'm also to do "standing treatment." If that doesn't work we are going to try the medication route (I have already tried fludrocortisone). He said that if I get my blood volume up and start exercising my heart rate should go down and that I will faint less. I feel like I've been prepped for this already.

I know this is still a form of dysautonomia... I just feel weird about the diagnosis, that it is NOT POTS and it is as bad as it is. I feel like I've been a baby about almost nothing. POTS seems so much worse to me than what I have, but the treatment is just as daunting.

*sigh* Anyone else in the non-POTS club, but still doing the Levine protocol?

[sue1234]

I hope all the recommendations help you! I'm just curious how they determined you had a low blood volume. I can't seem to find a doctor to address that with me.

[Bears Mommy]

I *think* they were able to diagnose my low blood volume by my constant dehydration. Every time I go into the ER I'm dehydrated. Also I had a ton of tests done last November and my Blood urea nitrogen (BUN)/Creatinine ratio was really high and I guess that can indicate dehydration? Funny as I was feeling pretty good that day!

The specialist just told me that I had low blood volume. I'm not quite sure why he knew that, I wish I did. He is a Dysautonomia specialist that I found on the DINET board so I assume he really does know what he is talking about.

[mwise]

Hi Bear's Mom,

You are not alone with not having a diagnosis of POTS. I have Orthostatic Hypotension Dysautonomia (Autonomic Neuropathy) and wasn't diagnosed with POTS. I have very low BPs with blood pooling in my stomach and lower extremeties. I am doing allot of similar treatments and therapies as with a POTS Diagnosis. I was diagnosed at Cleveland Clinic and follow with a Neurologist there on a routine basis. You are welcome to PM or email me anytime

[juliegee]

My son, Mack has the same DX. At Johns Hopkins they call it neurally mediated hypotension. POTS/NMH/VVS/OH are all types of orthostatic intolerance/dysautonomia AND virtually the same treatments are used to treat all of them. Here is a great informational brochure from John's Hopkins that discusses the different types of OI and all possible treatment options. It is a keeper- chalk full of info. i learn something new every time that I read it:

http://www.cfids.org/webinar/cfsinfo2010.pdf

Julie

[Elfie]

Hi Bear's Mom!

I have POTS. However, my current neurologist was one of the very first doctors to ever work on POTS research at the Mayo Clinic. She pointed out that POTS is actually a redundant name for what is essentially a orthostatic syndrome (postural and orthostatic describe the exact same symptoms). Some people with OH have tachycardia, some don't and those that do may or may not meet the POTS guidelines for beats-per-minute. Just like some POTS patients may or may not have low BP. I think many of the people on the board actually also have vasovagal syncope and OH, but they just simplify it by calling it POTS. Tachycardia is also often the symptom that cardiologists without experience focus on, while many of us are barely bothered by it while OH taunts us. Anyway, t isn't any wonder that your doc is treating you the same. POTS patients, especially those that take beta blockers can have the same mechanisms and symptoms at work as OH and vasovagal patients.