Pots With A Big ?

[lifesaver]

I saw the neuro who specializes in dysautonomic disorders today. He was kind but best of all, understood the long, painful journey it took to finally get he diagnosis.

He told me I have POTS, but with a question mark because I don't have the elevated heart rate when standing. My blood pressure plummets like a rock he said.

I now have a treatment plan and see him in a month

• midodrine, 3 doses a day at 8, 12, 4 or similar spacing, take it before getting out of bed
  
• salt everything and take salt tablets
  
• compression stockings--I wear them and they help a lot
  
• Begin some basic pilates and very light weights. I am not allowed to walk until I get in better condition. Have to start very very slow due to my level of deconditioning.
  
• Drink fluids-2
  and anything else I forgot-left the list in the car.
  

He also put me on a dose of Topomax as a migraine prophylactic, said they are not being treated properly. But I start that 2 weeks after taking the midodrine.

Going through my history--his resident took the history and dr. K went over it in detail--we discovered I have had symptoms of POTS at least since high school. He said mine got worse with every upper respiratory infection I had. Teaching really did destroy my health--kids bring so many germs to school. Strep throat and ear infections seem to have done me in. I wasn't lazy as a kid--I really did need to rest a lot.

Got a lot of answers today---heaving a sigh of relief. The hard work is beginning, but the search for a diagnosis is over. I can cancel the MRI and QST scheduled next week--fewer medical bills!!

[juliegee]

Hi Lifesaver-

How wonderful that you have such an interested doctor, willing to work with you. That is so important. It sounds like s/he's got you on a good treatment plan.

I just wanted to clear something up- semantics perhaps, but important nonetheless. If your HR does not elevate when you stand, you don't have POTS. If your BP drops, you do have a different condition (same symptoms called by several different names): Neurally Mediated Hypotension NMH, or neurocardiogenic syncope NCS, or vasovagal syncope VVS. All of these are autonomic dysfunctions, as is POTS. But in these conditions the BP drops with standing, without the elevated HR.

I hope your new regimen helps. Let us know.

Julie

[potsgirl]

Hi Julie and Lifesaver,

I was just going to write the same message that Julie did, but I'm sure she did a better job of it than I would. I have POTS/OI, which means like you I have a big drop in BP going from supine to standing, but my HR increases by at least 50-80 points to try to compensate for my really low BP.

It does sound like he's worked out a good treatment plan for you. Good luck with everything!

Cheers,

Jana

[lieze]

How wonderful to finally have an answer to what you are dealing with.

And I feel you too on not undergoing any unnecessary tests at this point. Who has the energy for it or the $$$.

And you ladies are so in tune.

I need to just write down my symptoms when I get a chance and let you diagnose me.

I have no official diagnosis as of yet but I feel ya on the germ thing.

I am a nurse and have become a germaphobe-not a good combination.

I realized too that I really put myself in jeopardy with my line of work.

Let us know if your treatment plan helps!

[lifesaver]

I do have a history of supraventricular tachycardia and years of elevated heart rate. I also have Mitral Valve Prolapse. For some reason, my heart rate has become steady in just this last year--go figure. But---I have been having severe symptoms of whatever version of dysautonomia with and without elevated heart rate for the last 3 years.

My body just does things very oddly. I have been doing a lot of reading on everything and think my doc is being very reasonable in adding the big question mark at the end. I see him in a month and we will go over the treatment plan--which is the most important part right now. Diagnoses can be fine-tuned at anytime.

Right now I have a very low heart rate--earlier this year my heart rate was continually elevated. Will be interesting to see where all of this leads.

Becky