Cardiologist Appt. Wednesday

[lgtaylor100]

I have a cardiologist appointment on Wednesday. It is with the cardiologist that originally diagnosed me with dysautonomia just by noticing my rapid heart beat. After that appointment last January I was formally diagnosed with a TTT by an EP at Jefferson Hospital in Philadelphia. The EP only diagnoses but doesn't treat.

My cardiologist who I will be seeing on Wednesday is not very familiar with dysautonomia and has had only one other patient with the disorder. At my last appointment with him this past March, my heart rate was not as high as when he originally diagnosed me so he said I was getting better even though I told him that I felt awful, particularly with the disabling fatigue.

My question that I am putting to all of you is what should I ask of him at this appointment. I am on Coreg, Midodrine, and amitrityline but my heart rate still goes up 30 points on standing, I am still extremely fatigued, and have severe exercise intolerance.

I would like to make the most of this appointment.

Any suggestions?

For those of you who saw my post about not being able to post new topics, I figured it out. I had to be on the forum screen and not on the view new content screen.

Lynne

[HopeSprings]

Have to admit- this appointment worries me for you. Seeing a Cardiologist with little dysautonomia knowledge, who thinks you're getting better (when you're clearly not) doesn't sound promising. I think it's a good idea to go in with specific requests. Maybe look into the Bystolic that another poster talked about? Or look at other medications that are recommended for POTS and try a new one? I don't see the point in continuing to take medications that don't help.

[lgtaylor100]

I guess I will have him check for heart damage since others have talked on this forum about damage.

I will also ask him about Bystolic, although I believe that Coreg and Bystolic are similar in that they are central beta blockers.

If anyone else has any ideas please let me know.

[janiedelite]

I was on coreg for a couple years and it was certainly helpful. For me, I've responded best to treatments that increase my blood volume like salted fluids, compression hose, and desmopressin. However, I don't do well with florinef.

There are lots of options for treatment (found on the DINET home page, under What Helps). Usually there's no "magic cure" but lots of time with trial and error before you find the best option for you.