POTS causes worksheet for you and your doctors?

[someonewhocares]

In talking to doctors and looking around here, I think one of the biggest issues is that there are so many causes for POTS symptoms that doctors may have a hard time getting all the research together or all the info in one place. I'm certainly not trying to step on your doc's toes, but I came up with something for Frances that might help everyone, including the doctors.

I put together a worksheet with all of the reasonable causes listed on potsplace.org, some notes about each one and what to look for, and the tests that might be used to determine if that is the primary cause of your symptoms.

Here it is in excel format, ready to print out and be put in a binder or folder:

POTS causes and tests worksheet

just in case some of you don't have excel (I don't know if this one will print right), I've also made a PDF of it:

POTS causes and tests worksheet - PDF

PLEASE give me feedback, comments/suggestions, ANYTHING to make it more useful or correct any mistakes. I can't promise that it will be updated in a timely fashion, but I'll do it as soon as I can. My e-mail is gordoodle@hotmail.com

I'm working on a treatment sheet right now as well. This one is a little more complicated, so it might take a while for me to get it done. It needs to include interactions and side effects.

Also, an important question:

While we're trying to pin down the diagnosis thing, I'm thinking about putting together a template for a symptoms journal so that people can write down how they were that day, what they did, etc. - an interested doctor might be able to get something out of it or see a pattern. Here's my ideas so far:

date

scales of 1-10:

chest pains

aarrythmia

tachycardia

dizziness

fatigue

headaches

fainting

blood presure and heart rate if taken, at what times...

What you ate

What strenuous activities you performed

how much sleep you got

fluid intake??

I'm not sure - it seems like a lot to keep on a daily basis, but I think it might help even if kept sporadically. Can anybody give me any tips on how to do this so it's convenient and easy to keep up? Maybe needs to ask for less info so you don't feel like lab rats some days?

Let me know if there's anything I can do to improve on this!

- Gordon

[someonewhocares]

and one more thing - does anybody know how to get in touch with the people who run potsplace.org?

I've made the causes and what helps and what hurts pages into word documents for "The Binder" but I'm not sure if it's OK to put links to those up here and redistribute the information.

Thanks!

[Michelle Sawicki]

You can email me, Michelle, at: Michelle@potsplace.com

Michelle

[VJWeaver]

It is a really good idea about listing your symptoms, B/P, HR, etc..

I have a daily planner and I list my B/P, Heart Rate, what symptoms I am having, and if I took extra meds to help me. If I am feeling good I put that in. This way I can keep track of it for me and the doctors. When I used to go to the Emergency room I would put in my Journal what I went for and diagnoses sheet in with the day I went in. This way I don't have to hunt it down later.

I have kept a Journal (what I call it) for a long time and it has helped me a lot. I have such brain fog that I forget things. This way it is in the Journal for future reference.

As far as the cause of my POTS I will never find out how I got it. The reason I say that is on your list to take to the doctor I have 8 out of the 19 on there. We could never figure out if the egg came before the chicken or the chicken before the egg. LOL....So I gave up and just treat my symptoms as I have them.

Hope everyone is doing okay,

Vickie