K8michele

Thank you all for the responses it's so nice to reach out and be reached so to speak :-) Saw my neurologist yesterday who didn't see why it would hurt for once a month iv but she said she doesn't treat pots but referred me to a cardiologist she likes to see if I can get more help than my cardiologist now is giving. Onward to another I guess. It just gets exhausting.

I'd only want them once a month just enough to get a few good days. My twins gave a rare immunodeficiency they have gotten ivs every 3-4 weeks for 8 years and never developed an infection. I just feel the benefits do out weigh the risk. I don't knuw I guess I feel like they aren't the ones bed ridden never getting to achieve what you wanted in life. Thank you I will look into those drinks! I take eletrolight suppliments for runners now to try and help, works a little just nothing like the Gatorade. :-)

Hello I've had POTS for 18 years. I am on the waiting list to see dr. Grubb because I highly suspect hyper or mcad. I've been to Cleveland clinic and found they have a great diagnostic facility but not so much treatment. From the beginning of this awful life stealing condition whenever I'd crash so bad I'd be taken to the ER and be given fluids it was evident how well they worked, my dad would say you could see the change start from my toes and work it's way up. My cardiologist refuses to give me an order for saline therapy. Over the years I have tried everything. Florenif I reacted too much to and my BP went dangerously high. Beta blockers I did not react well to either. Tons of water tons of salt. Lose weight gain weight workout, whatever I was told would fix me I did it. Gatorade worked for about 18 months. So much so I thought I could finally start my life I was applying to schools ect. Then I started having a bladder infection that would not clear and finally found out I had ulcers in my bladder from all the acid in the Gatorade. So I had to give that up and well the good I was feeling I'm beyond frustrated I've went to another Dr in the practice but he would'nt treat with out consulting my other cardiologist. That practice is the only in the area that takes my insurance. Are there other specialist that treat this that I might try? To go to the ER everytime got more stressful because I never knew if I'd get a good Dr or one that would tell me pots isn't real it's a lazy persons disease (yes I have actually been told that). That I don't go to the ER until I can't stay conscious and my heart is swinging from 80 to 204. I know IV fluids work and I feel like Dr's act like I'm asking for pain meds. They are perfectly fine giving me pill after pill with all kinds of potential side effects and reactions but not saline that helps. I know the benefits would far out weigh the risk and it's confusing why this is such a fight I'm losing. I just want to be able to feel well enough to play with my twin boys and live life a bit not confined to this bed and these walls. I know you all understand :-) What do I do?

I know this thread is old however I too am from northeast Ohio looking for a good dr. Ive had pots for 15 years its taken so much from me. I've been on dr. Grubbs wait list for almost a year now and not happy with my current cardiologist. I've been to Cleveland clinic seen shields and jeager but was not impressed. Just wondering if you ever came acrossed any while I wait for dr. Grubb.