pobarjenkins

I have had POTS for five years. I have gotten a flu shot every year with no negative effects.

Thank you everyone for replying! It means so much to me! I do think I did a terrible job of describing everything. It's so hard to explain and it's almost like you have to feel it to understand. It's so nice to hear from people who deal with all of this too.

I did have an epidural that seemed to go well. The POTS issues showed up about three months later and the tilt table confirmed.

Oh my goodness, you explained a lot of what I experience. Thank you so much. And I did have an epidural that seemed to go well. The POTS issues showed up about three months later and the tilt table confirmed.

I have epilepsy as well, but it's been well treated for years. The symptoms aren't like seizures at all, though I definitely made it sound that way! A cardiologist was present when I had one of the episodes and told me she had seen similar issues. It's just nice to hear experiences that are directly from the people who deal with it all!

I do have epilepsy, but it's been well treated for years prior to any symptoms. Definitely not seizures, although I 100% made it sound like it! I had a cardiologist confirm, and I have my neurologist as well.

I've had POTS for a little over five years now. A few months after I had my first child, it started. I blacked out the second I stood up. I was lucky that it happened while I was in the hospital for something else. I was on bedrest for a week, had the tilt table test, was diagnosed and then treated with medication. A few months later, the episodes changed. When I have one, I completely lose the ability to walk or remain upright (even crawling is impossible). It isn't always dizziness that does it either (though I still deal with that and the other common symptoms). I just lose control and my legs flail around. Basically the worst episodes start with double vision where my eyes roll upward repeatedly, losing control of my lower limbs, then intense vomiting. Sometimes I only experience the inability to remain upright however. I'm on a different medication now, but every now and then I still have these episodes. I've seen so many posts about dizziness causing these issues (and it definitely has for me as well), but nothing about it happening at times when there isn't obvious dizziness. I don't know how else to describe it. It's like my legs aren't attached to my body and they flail around if I move them. It's a horrible feeling. It's not just weakness, it's absence. At times when my husband has had to support my entire weight while I walk, I have cried because of how it feels. I was wondering if anyone has experienced episodes like this too. Episodes where it's just losing control of your body. I'm sorry if this doesn't make much sense, as it's something that's so hard to describe, yet so awful to experience. I guess I just want to know if there is someone who has felt this too.