Questions about first visit to POTS specialist

[momofpreciousboy]

Finally the long awaited day tomorrow. I go to the cardio tomorrow and wonder about some things. Do you guys get everything from your specialist--wheelchair permits, IV prescriptions, whatever else you need from the autonomic specialist?

Is there a list of questions anywhere to ask them?

I had another setback yesterday night after feeling so good in the afternoon. I cut my husband's hair, and I think it triggered something-I was holding my neck down and to the sides to cut. Woke up after less than a hour and dizzy, congested feeling, feeling that my heart was fixing to start racing, lots of trouble breathing, need to go to the bathroom, neck very uncomfortable, and I get so scared during these times. I would swear they are panic attacks--but I guess they are presyncope spells, from what I understand. I actually asked ER about that and they did not think they were panic attacks--can you believe that??. Anyone know the difference? I really think during them --how do you know you are going to take your next breath if the ANS is so messed up? Also, what keeps your heart and bp from getting so high it does not kill you? My bp was 168 over something. I mean if it is not working right--really how do you know? Do you guys all have these thoughts?

Way off subject.

I am in a huge mental fog--which is not good as I have to do paperwork and figure out all the questions I need to ask. I tried to proof read and it is so hard to focus --do you guys have that problem too? It is like you cannot even think. Any ideas would be appreciated. It will be so nice not to have to explain what POTS is to a doctor. Thanks, JenniferTX

[steph37822]

oops

[Ernie]

Hi,

My PCP gives me most of my meds and paper work.

The difference between POTS and Panic Attack is that with POTS you have high standing catecholamines, many POTS patients have low blood volume and most of our triggers are orthostatic.

Ernie