mully2014

Definetly have these and it can be really scary when it feels like your passing out in the night.

I will keep you in my prayers to be able to get to see a doctor and hopefully soon! Be careful about the motorcycle thing I wouldn't want you or anyone else to get hurt if your condition isn't managed.

Going to a doctor could be really helpful. A med could be the solution to your headaches and your pots so I would really give it a try if you can. Hang in there and I wish you the best!

Oh that would be so nice to know what I could eat (that I would want to eat too) that would help with my condition. I've tried different things but haven't felt a difference might try going completely gluten free and limit dairy because I think my condition and all of the meds I take are taking a toll on my poor digestive system. I can't wait to look up some of these new diet ideas. Thanks!

Compression stockings are helpful for more of a long time help with circulation in the legs but in the summer that is hard to do so I try to move them as much as I can and massage them.

Black licorice is used to raise the blood pressure

I think that that the meds and different things I do can interfere with the normal way my body would want to do things at this point. I believe I will get better but at this point my body wants to pass out and doing other things can delay the passing out but not stop it (as of right now) but when it delays it I only feel awful sometimes it is hard to figure out if the awful feeling is worth the couple of extra days of not passing out because of how miserable I feel.

That is sooo great!!! I'm also 16 so I understand all of the difficulties of trying to feel like a "normal" teen. This will be a great way for her to get that feeling again!

You can have your doctor sign a sheet saying that you need an aisle seat for your flight, that is what we did. The hardest part for my condition was my body adjusting to the ascent and descent (mostly when we were going up though). I hope it goes well! Good luck!

Thanks! I've been on both of those beta blockers before and now I'm on bisoprolol. I have no clue how she chose this besides that it has a lower chance of having stomach and digestive side effects that I get often. I just started it today so we will wait and see.

Wow!!! I thought I was the only person that ever felt this way! I am also on ritalin to raise the blood pressure for the syncoe episodes. It is amazing all of the connections there are to this condition.

Wow!!! I thought I was the only person that ever felt this way! I am also on ritalin to raise the blood pressure for the syncoe episodes. It is amazing all of the connections there are to this condition.

If you are on a beta blocker which one are you on? Why were yo put on that one? What side effects or benefits do you notice? Thanks...my doctor is talking about switching up my beta blockers but she is not exactly sure which one so I'm wondering what everyone else's experiences.

Yeah even when I'm outside for 15 minutes and it is sunny out I will get a weird red blotchy stuff wherever the sun was hitting me. I didn't have this kind of reaction before this condition but I don't know if any of my meds make me sun sensitive.

I'm almost 17 and I haven't been allowed to drive because of how bad my symptoms of POTS and NCS are (I wouldn't for the fear of killing someone) but it is hard to see all of your friends driving and not getting that freedom. I always feel so dependent on people and like I am a burden to them because I live out of town so it isn't convenient for people to pick me up and take me places. Unless my symptoms were for sure managed I would have to go a year without passing out before I can start driving!

yep get lightheadedness with all of those things. When I went on a plane a couple of weeks ago when we took off my mom looked at me and said I went extremly pale and I felt like I was almost gonna pass out.

yes! Definetly pacing out my activities I feel like I have enough energy some days but if I over do it then I will feel out of it for days....hard lesson for m to learn cause I'm always a person who wants to be doing something!

The pains were so bad that they would wake me up and almost make me cry.

I had fainted yesterday and normally my headache gets worse and it did. I have a chronic head pain all of the time for a year and a half now. Last night however, I got these extreme stabbing pains in my head. I've had these before after getting a concussion but nothing like that has happened recently. SO I'm wondering if anyone else has had something similiar to this happen to them.

Thanks so much BellaMia!!! Definetly need the guidance right now!

Ummm I'm now in the same boat you are/were in not exactly sure what you decided but if they haven't done the pacemaker yet have them have you wear an event monitor. We are currently discussing if a pacemaker is an option but we will decide this after i get the results from a 30 day heart rate event monitor.

I have much of the same problems you are having too and just found out yesterday about this being an option again. Have a couple of days to come up with questions. I understand what you had/having to go through.

Hope it all went well for you whatever you decided

It seems like my body is retailiating even more now...I used to be able to take this beta blocker but now I have such severe reactions from it and I don't get relief. My parents are really good about not having me take something that has bad side effects but my doctor typically has me keep staying on it even though it makes me even more miserable than I am (which is sometimes saying a lot).

An interesting thing about why florinef might work so dramatically in certain peoples bodies is the renin levels. If you have higher renin levels you are more likely to respond to/have florinef work for you. My doctor tested me and that is how she decided to keep me on florinef.

Unless it is an allergic reaction it takes my cardiologist a super long time to get me off a med. I normally suffer way too long through things I shouldn't have to and I wish I didn't have to. Make sure you don't suffer too much by staying on a med it isn't helpful then either!

Yeah I've heard of the gluten stuff going both ways some people go gluten free and feel energized but others feel evenmore fatigued than before.