So Discouraged

[mrsdavidson8605]

I haven't posted on here for a while, bc honestly, things were a litte better over the summer. Not wonderful, but I was able to get out and do things. I went and saw Beverly & Dr. Grubb in July. They both agreed I should try a birth control pill that stops my cycles all together. They also suggested Welbutrin and the injections, which I don't want to do the injections due to the fact that my insurance wont pay for it. Anyway, Dr. Grubb said to start the BC pills for 2 months, then try something else. At the time, I was feeling decent, and thought "I may not even need to take anything else at this point!" ha boy was I wrong.

It seems I have two different scenarios when I get sick. Scenario 1: I am extremely weak, my heart races, can't think straight. Scenario 2: I feel like i'm having adrenaline surges day and night (like i'm on a rollercoaster ride & can't get off). I can't sleep well, which makes me SO tired during the day.

Right now, i'm back into scenario 2, which is the worst of the two. I feel so horrible! I know it's not anxiety, but it almost sounds like it, doesn't it? I begin to doubt that it's POTS again, since there are so MANY different symptoms. I don't know where to turn from here. Should I get a sleep study? I have an appointment with my PCP on Monday. I am going to ask that he draw lab, just to make sure everything is within range ( I had kidney surgery about 6 months ago so that's not a horrible request, I think). Then i'm going to ask that he consult with Dr. Grub, although i'm not sure if my doc will do it or the nurse. I hate it when they have the nurse do their work for them! UGHHH anyway...

Any suggestions? It will be 2 years in January since my symptoms started. They say average onset is 2-5 years, i'm hoping i'm on the low end of that spectrum but at this point, i'm not feeling too positive about it. I think the worst part about this (besides NO ONE understanding) is that you do fairly good for a while, then it hits you again like a mac truck.

Anyway, I've been watching that new show called the "Doctors" on NBC and I thought about writing to them. Maybe if a bunch of us did, they would air a story on POTS/NCS and we could educate more people. I think it's so rediculous that so many doctors don't have a clue!!!!!!!

[EarthMother]

I try so many different things it is often hard to pin point what helps and what is causing more symptoms. But when I was on Seasonique for 5 months is when I began my steady decline. I'd been on BP for years (decades really) and it was unfathomable that a low dose hormone pill would give me trouble. I switched back to ortho-tri-cycline -- but they gave me a generic and my symptoms went through the roof. Then I went back to the original brand. By then my cardiologist insisted I go off hormones all together (not because of my symptoms, but because I'm 45 and he didn't feel it safe any longer). So I've been off for three weeks now ... and I must say the adrenaline surges have subsided greatly.

Good luck finding something that works for you.

~EM

[carinara]

I can really relate. I went through the same nightmare! for years. But i must say, that when i stopped the birth controll pill a few years ago. I felt better. I have never took the pill again since that time.

Going through the phase were you get to know your symptoms and try to adjust and try to figure out what works and what doesnt is a very hard and long lasting thing. There are so many things that can make symptoms worse or make new symptoms show up. I wish you all the best. Hang in there, carinara