megsmit6

Anyone experience sudden vision loss or other visual disturbances?

In training for my half marathons I go through this on some days. Actually most days are very difficult to get my runs in. But rarely I will have an amazing day and I enjoy it. I really listen to my body and drink a lot of Nuun. If I need to rest a day I do but I still challenge myself.

I get that when my body is fighting my midodrine

I work full time in the ER at night. I am on FMLA (Family Medical Leave Act) so that way in case I am in the hospital or if my vital signs are not cooperating that day I can call out of work and not be punished and my job will be held for me. You should look into it.

I am traning for a 5K right now. The most important thing I have learned is just to listen to your body. I wear compression socks while I work out and I do it at the end of the day so that when I am done I go home and lay down or relax. I have done really well. I had one hospital stay recently but got right back into training. I eat very healthy and drink lots of water. If I dont eat properly then try to exercise it is really difficulty to make it through. Sometimes you just have to be in the right frame of mind as well. It is my stress relief and I fight to keep doing it everyday!

http://dealingwithpots.wordpress.com/

I have signed up for a 5K that is in April! I am training now and so far it is rough but I am determined to do it! I also recently got my POTS awareness ribbon tattoo on my wrist as a reminder to keep going and to not let it bring me down! We can cheer eachother on Shannon! Good Luck!!

Has anyone lost hair while on Midodrine?? Mine is coming out in chunks since I started Midodrine and Florinef a week and a half ago.

Anytime Sarah! I am running in a Diva 5K first to see how theres is set up and then I am shooting for October for the 5K here!

I am thinking of planning a 5K run/walk in my community to raise awareness and research funds for dysautonimia. Has anyone on here planned one before? I am also planning to run in it.

After seeing the EP and having a tilt table test (doing it twice in one day, the second one was after a dose of midodrine to make sure it would work) at a cardiac institute the EP took me off the beta blocker and gave me midodrine and florinef. He also diagnosed me with NCS. Thank you guys for encouraging me to keep an open mind. He seems very knowledgeable and willing to treat my POTS and NCS. I have renewed hope in finding a treatment that will work.

I am currently being treated by Dr. Frazier in Greenville,NC for POTS/NCS. He is an cardiac electrophysiologist. He is very knowledgeable but he is very busy so be patient and expect to wait when you go to his office.

There is a lot of discussion about low bp with POTS but not much about high bp. I was just curios if anyone else is struggling with high bp controlled by beta blocker but my heart rate is still high. There is a lot of information out there about how to treat low bp but not high bp.

Thank you for the responses I will do some research!

Can anyone recommend a good blood pressure monitor, there are so many different ones available???