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.

Hi I'm planning on organizing a walk this spring, but just for friends and family. I would love to compare notes if you want to.

Sarah

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???

Thank you everyone for the information! I really appreciate it. I will let you know how it goes.

SInce I cannot get into the Mayo Clinic till April my cardiologist is sending me to an electrophysiologist to confirm my diagnoses. I honestly think it will be a waste of time when my cardiologist is 99% sure I have POTS those were his workd exactly. Can the CE recommend a better treatment or something? I just don't know what to expect......

I work in the ER and a dangerous heart rate is different for everyone. You have to take in account meds and dx. My cardiologist loved my heart rate to be in the 50s. But of course that is low for me but 50s is my new normal since being dianosed with POTS in July 2012. He just had to adjust my beta blocker so today I have been 49 or so but it will be like that till my body adjusts. Give it time.

I was diagnosed July 2012 with POTS and had to have my gallbladder removed the end of October of 2012. I ended up in the ICU because my vitals were so out of wack the surgery would not be safer until I was stable. I told my surgeon the articles I had read about POTS patients having issues with anathesia so he was worried and did some research of his own. I was very lucky because he educated the anathesiologist and had my cardiologist in the operating room just in case. He said my heart rate was fast but with some meds they were able to control it. The day I was put in ICU my heart rate dropped to 32 and I passed out and woke up with pacer pads, very scary! I didnt have the surgery until 4 days after that when they knew it was safe. Knowledge is everything, had I not known POTSies have trouble with anathesia it could have been a different outcome. I have had 5 surgeries prioir to POTS and never had issues. DO research on anathesia and POTS educate whoever is doing the procedure!

I was diagnosed with POTS in July of this year and things have just been spinning out of control since. One of the worst things I have noticed is I get sick so easy now. I work in the ER at night so I am exosed to a lot of different things in one shift but I have been doing this job for 2 years and I have not had problems before. Now, I catch pneumonia like every 3 months which puts me in the ICU because of my POTS. Does anyone else notice a connection with POTS and compromised immune system??