Adventures in a backless gown...

Hello all,
I haven't been on for a week or so because I've been in the hospital. After seeing my cardiologist two weeks ago, we decided that my present treatment wasn't aggressive enough, and we wanted to try something new. I've been passing out again, and so what better time than the present to try something new. I got on the waiting list to see Dr. Grubb in Toledo, Ohio. He is said to be the best in the country, if not the world at treating POTS. The wait to get an appointment is over a year long, but from what I've heard, he's worth it. I also am filling out the paperwork to get a cardiac service dog. These dogs can actually sense when your blood pressure is dropping and tell you so you can sit down before you pass out! They can therefore also tell me to pull my car over if I'm driving and have a problem. How amazing is that!? My cardiologist has a patient who uses a cardiac service dog and LOVES it!. I hope I can get a dog soon, but again, the wait is 6 to 24 months to get one. It would be worth the wait to regain some independence and to once again feel completely safe leaving the house alone.
I went into the hospital to try a new treatment out that we had heard about from other POTS patients and read that some "super hospitals" were trying. The treatment is to give IV bolus treatments of saline or saltier saline. If it worked, the doctor could get a PIC line put in and I could have IV treatments everyday at home, but while it helped a slight bit, it wasn't anymore than if I had just pushed water and gatorade consumption like I usually do. It was a disappointing result, but at least we tried it. We were also running various other tests while I was in the hospital to rule out other possible causes for my worsening condition.
While I was in the hospital, my doctor tried doubling my atenolol (a beta blocker I take to lower my heart rate that also lowers my blood pressure) and my midodrine (a medication used to raise my blood pressure but doesn't effect my heart rate). Apparently this was a bad move, but I had asked him for more aggressive treatment options and thats what I got. The whole time I was in the hospital I was on a heart rate monitor, it was constantly tracking my heart and what it was doing. On my second day my heart rate went just below 50, which is very low for me. When I saw my doctor the next day I told him that I was scared about that and he said not to be nervous, that its when it goes below 40 that you should be nervous. Well wouldn't you know that the next night my heart rate went down to 38. I was so scared I couldn't sleep. I kept thinking about what would happen if my heart stopped or I had a seizure or a stroke or something. The next day, it dropped even more, 35. I called my nurse and told her I was scared. She said "Don't you worry, I have a crash cart right outside the door for you just in case, and I can have the crash team here in a matter of seconds if I need to. And if it goes below 30 I'll be calling them right away..." I sat there in my bed thinking "gee thanks, now I feel better..." I talked to my doctor later that day and we stopped the atenolol completely.
I was sent home to rest with the instructions to stay lying down as much as possible until the atenolol was out of my system. I've done just that. I've slept all the time since being in the hospital, I'm completely drained. Slowly the heart rate has risen as the atenolol has left by system, but now I have a new problem. My blood pressure has been bipolar again. It will go from 90/60 one minute to 160/90 the next. For those of you who don't have that happen, it makes you feel like you have a migraine, your heart is beating so hard it hurts, you are almost choking because the palpitations in your throat are so strong, you feel like you're going to pass out, you get hot flashes but you're cold, and you feel like just lifting your head takes a great deal of effort. Once everything evens out again, you feel like you just ran a 5k when dehydrated and hungover and then got hit by a train (not that I know what that's like, but I imagine it would feel like how I feel). Now I've been taken off my midodrine, so the only medication I'm on for my bp now is florinef, and I am on the maximum dose for that. We'll see what happens.
I had been hoping that the IV treatment would work. I am getting so tired of trying things and having them not work. This isn't easy. But I am even more tired of being cooped up in this body. I literally feel trapped in this body that isn't working, meanwhile I would give anything to be able to run or dance or ride a roller coaster or SCUBA dive. We need to find a way to get me better, everyday spent in bed is a day I will never get back and that kills me. I don't want to spend my life in bed, I want to live it. I want to get out of the house and run errands, I want to work, I want to go on day trips and not have to worry about POTS. I want to be able to leave the house alone and not fear what will happen if I pass out somewhere or have my bp drop and not be able to drive myself home. I want to not be scared of what my future will be, and because of that, I am trying to get better so I can control that. After all, I need to get better so I can change the world.