gdomaracki

What my pots doctor actually did to me, and I check once in awhile. Is if you think your pooling, you can actually press on your lower legs and if you see an imprint of your finger (usually white) that means that you are pooling. Thats what they did to me anyways

So glad you found this forum! Its always a blessing to know that there are other people going through exactly what you are and are here to listen and support you. There is hope for us and I have heard many good things about Vandy, but have yet to go. I do hope that your husband finds relief from his symptoms and gets feeling a little better soon! It takes time, too much sometimes. But with patience, we can get better. Welcome again!

Nicole~

Dayna~

I have never experienced blood in my urine, but I wanted to send you some encouragement as you go through yet another hardship. And possible dx. May the doctors have some answers for you and be understanding to your condition.

In my thoughts and prayers,

Nicole

Kristen~

What wonderful news!?! Your an inspiration to us all! Congrats

Belinda~

Dont give up now dear! You have gone through so much, you will make it through this. I promise!

I do hope that you can find help from somone, I do know how difficult it is when no one understands what your going through and has little/no experience in your condition. Hopefully, your appt with Bev will go well and they will have some answers for you. Hang in there hun! May your symptoms subside soon and you be feeling better soon!

In my thoughts and prayers~

Nicole

Thats great you had a good experience!

I'm not quite sure what you mean by "slow rehab" and why they need to take you off meds to do so?!?

Nicole~

I was doing a little driving here and there, whenever i didn't feel potsy. My ep went and had my liscense suspended due to medical conditions until they can get my syncope under control. Even though its hard having that taking away at 19, I understand that its for my own saftey and the saftey of other drivers. If I get caught driving, I will lose my liscense indefinately. (they might be just trying to scare me, but i listen) I do go in June to be re evaluated and possibly get it back.

Nicole~

Geez, what a horrible experience. Thank goodness its over now. May you have a quick recovery and the test results be helpful to you!

Hope your feeling better soon!

Nicole

Unfortunately, I know exactly what your going through. My car was taken away last week and i was devistated. Even though I'm not allowed to drive, it was the fact that if i needed to drive somewhere close or get out for a little, I could. I didn't have to rely on others. I do hope that you recieve the assistance that you need. I know it takes a long time, may you have patience dear.

In my thoughts and prayers!

Nicole

Oh dear, i hope that everything is alright. I know what you mean not wanting to start a new medication, especially beta blockers when your blood pressure is low. I do hope they find out what is causing your discomfort and you find relief from your pain.

In my thoughts and prayers!

Nicole

Geez, i know how that is. No sooner did i get that thing on and would call in, they would tell me to head out to the hospital cause something was wrong. Obviously, i was fine, just my pots.

Hope all goes well with your tests!

Nicole

Have you thought about taking online classes? I know they're not the same, but I'm looking into them bc I just dont have the energy or a drivers liscense to go back to college yet.

Nicole

Oh dear, you poor thing! I hope your up and feeling better soon.

Nicole

Thats WONDERFUL news! Glad your battle is over fighting for fluids.

Nicole

We all have different experiences, but i can tell you from mine. The first time I took it, the ep that gave it to me didn't really have any idea what she was treating and ended up spiking my bp real high. That was on .2mg 3x a day, which is unheard of. I started taking it again a few weeks ago with my midodrine, and I have seen a great improvement. This time I'm only on .1mg 1x a day. It may take some experimenting, but I hope you find yours!

have a good day

Nicole

Glad I'm not alone! This definately happens to me, especially when I'm going to be sick. I think its my bodys way of trying to say that I'm not gettting blood to my brain and I need to lie down. Its sooo scary!!

Nicole

Sorry you didn't get the results that you wanted with your ttt, but quite honestly I would look at it as a blessing. When I had mine done, I not only passed out but had a seizure and lost control of my bladder. It was definately a horrifying experience for me and my blood pressure bottomed out past measurable.

I do hope you have luck finding a dx and hopefully they can help you at Vandy! I am still thinking about going down there, but I have a great pots doc.

Nicole

Thank you all for your comments and suggestions! I do think I will go after all, just be prepared. Get lots of rest and fluids.

I'll make sure to let you all know how I did when I get home!

Thank you again,

Nicole

I had a question about altitude change for you all,

I am planning on going up the mountains this weekend with family and friends, but I've been hesitant on going because I'm not sure if the change in altitude will affect me. I live in pa if that helps at all and the height to which we are traveling is definately greater. I know that we all become symptomatic to different situations, but any advice would be greatly appreciated!

Hope you all have a *Wonderful* weekend!

Nicole

Before you can really treat your dizziness/lightheadness, I would try and find out what might be causing this. I know that dysautonomia doesn't always allow us such easy answers, but maybe your bp isn't stable, your blood sugars are low. Things of that nature. I know that taking florinef and midodrine have helped some with my lightheadedness/dizziness bc I have orthostatic hypotension which induces this. I also have to keep an eye on my blood sugar too bc I'm hypoglycemic, and this can affect you the same way. I do believe that having these illnesses may just cause the dizziness itself, but I'm sure you can find something to help illeviate the discomfort. best of luck to you dear!

Have a wonderful evening!

Nicole

Aw, the poor thing! Please tell her that we all love her and hope she is home and feeling better soon.

Nicole

I Wonder The Same Thing Ever Day. . .

This is one symptom that I am having a bit of problems with. It's like my brain took a vacation and left me here to try and do this on my own. Like the others have mentioned, I try and make sure that my fluid/salt intake are inhumanly high. I get so bad sometimes that I don't have any idea what is going on around me, or what people are saying. I too hope to wake up someday and not feel this way. My pots doc did put me on .1mg of florinef 3 weeks ago and I do feel more awake. Another suggestion that I have seen results in is ADD medications, which I myself haven't tried yet.

I do hope your fog clears up soon!

Nicole

Belinda~

I'm sorry your having such trouble right now. I do know that claritin has helped me with my seasonal allergies, they can get soooo bad sometimes. Like all medications, they might not be for you but it's worth a try to help ease the sniffles. I do hope your feeling better soon!

Nicole

Oh dear, 40 bmp is awfully low. I do believe if I can remember correctly that >60bmp is technically brachycardia. I would definately talk to your doctor about this, especially with such a low pulse. This happened to me when I tried taking a beta blocker, which I am still unable to take. You might have to try taking a few medications together to be able to tolerate it.

Best of luck deary!

Nicole