mewinston

... and sometimes drool. How embarrassing is that? Does anyone else have issues with this? I choke on almost everything that I drink.

Michelle, I do have seizures with my POTS, non-epileptic. I often go through extended periods where I can't move my body, or talk, and can barely breathe, but I am aware of my surroundings. Sometimes it feels like I have marbles rolling around in my head. I get scrambled and confused. I also feel physical pressure in my head. One EMT actually thought that I was faking. She did a very painful chest rub, which I couldn't feel until the next day, and told me I was faking. I could hear her, but couldn't respond. After carrying me to the ambulance, they told me if I didn't help them get my clothes off, they would cut them off. Big whoop. I still couldn't respond. After lying down for a while I was able to move one arm which I attempted to use to take my hoodie off. I thought it was completely out of line, but that's a total tangent. Anyway, I'm feelin you on this one.

I live in Arkansas. I actually feel worse when it's hot, but the storms do cause some humidity which definitely worsens my symptoms. Hope you get some rest and relief!

I'm in the same place you are. I was carted through my last year of high school occasional in a wheelchair, (what time I wasn't in a crib in the nurses office) and I've used them in the hospital, but the other day my mom had to use one for me in Walmart. I was really worried about how people would react seeing me walk in, then sit in the chair, but the clerk was actually really helpful. My mom, slightly embarrassed, explained that I'd been having a lot of seizures lately, the short version of "my daughter came down with a mysterious illness when she was seventeen with super weird symptoms and is now almost totally dependent on me." He said "No problem, and helped us learn how to operate the chair. Other shoppers didn't give me to many weird looks while my legs shook and my mom and sister traded off between who was going to push me and who was going to push my little nephew. My nephew thought it was totally novel that his aunt was also in a cart being pushed. Anyway, I asked my doctor for a prescription so that my dad won't have to carry me. He's disabled with POTS as well, so he can't be lifting 145 pounds. I have the prescription but have no clue where to fill it, and I still have reservations about actually using it. I feel like people think I'm some sort of liar because I am able to function almost normally at times.

I was extremely angry when I viewed the results of my ttt. I'm in rural Arkansas. Most doctors and medical professionals in my area have never heard of POTS. I don't even have my diagnosis on paper yet. The ttt was performed incorrectly, and like all of the blood pressure cuffs and stethoscopes before it, the tilt table was determined to have malfunctioned when my bp and pulse were obviously abnormal. Also, it was done on a "good" day. Three years later, and my doctor had sudden amnesia the other day, like he'd forgotten completely who I was. He's always been great trying to treat my Dad and I as best as he can, but at my last appointment he acted confused about my condition and said he'd call me? No call yet. I need to see a specialist. I can't work, can't even live my home life. I'm always hurting or tired or having seizures or passing out. I'm having to move home, and my doc prescribed me a wheelchair that I'm not even sure insurance will cover.

I have a few part-time jobs, but it looks like I'm going to lose all of them. On top of that, I have two college degrees that I can't use, and I'm no longer transferring to prep for the job of my dreams. I think the college I chose is built for the healthy and wealthy. Also, I'd have to have someone take me to classes in a wheelchair. A career is looking more and more impossible.