As most of you know (since most of you access this through Facebook), I finally found a doctor who finally diagnosed me officially with dysautonomia. He told me he is not going to classify it because based on my symptoms I fit into at least 5 of the categories, including one of the less desirable ones that may make your life a little shorter, and they are all treated the same way pretty much (not really, but at the beginning) so right now we are just going to worry about stabilizing me and figure out more and classify me further and personalize the treatment in the future.
Now let's back up like 12 years...maybe further than that...actually probably my whole life.
Since I've been dealing with this my entire life I never knew it was not normal to almost black out every time I stood up, or to be dizzy and see stars whenever I was up, to have a super fast heart rate, to feel nauseous when I was standing, to start shaking internally and need to sit down when standing up, etc.
I thought everyone couldn't raise their arms above their head for a long period of time (like to dry their hair) or else they would black out, was extremely tired all the time--to the point that sleep didn't take care of it ever, was short of breath for stupid things like rolling over in bed, got sick after they ate and had to take a nap, got overstimulated by lights-noises-sounds (2 sounds at once absolutely throws me over the brink and makes me have convulsions), ran into walls and was off balance, was in super immense pain all the time.
I thought everyone always had to have a drink in their hand and their thirst was never ever satisfied, was either always hungry or never hungry depending on the day, everyone was super sensitive to chemical or any smells, and always felt like they were in a video game and not in reality all the time, like you are a puppet on a string being manipulated by something else and you didn't have control of anything you did (I just thought it was God). Imagine my surprise when I found out this wasn't true for everyone, in fact it was quite opposite.
Since I've been dealing with this my entire life, I thought all this was normal for everyone. It started making my life a little difficult to manage in high school around 16 when I got in a car wreck (11 years ago). Soon after that I had to start taking shorter shifts at work and even then felt I couldn't stand the whole shift and kept asking for a stool. I both was in immense pain and felt as if I was going to pass out after about 45 minutes. My manager was accommodating but thought I was kind of a sissy, especially since I was very active and on a junior olympic track team outside of work.
In college it got really bad, especially after I got mono my sophomore year. I never recovered. I never had energy ever. If I stood for longer than 20 minutes I was going down. This downward spiral began 7.5 years ago. I went to multiple doctors and no one could figure it out. I had a tilt table test and it was positive (that means I passed out on it--my heart actually stopped on it) but when I came to the doctor said I had something called orthostatic hypotension and a lot of young females have it and they grow out of it and it was no big deal. He put me on 2 meds that made me feel like crap and I quit taking them and just tried to ignore it. I kept passing out almost daily, but wasn't going back to the ignorant doctor.
I got sicker with my colitis, lost my job, and moved to Indiana. I was getting my remicade infusion one day at an infusion center in Indianapolis and met someone who was getting a saline infusion and we started talking. She, after hearing my life long story and symptoms, swore up and down I had this thing called dysautonomia. I go home and look it up and swear I do too--and Orthosatic Hypotension is one of the subytpes of it but the stupid doctor in NC didn't tell me this, just that I would grow out of it and it's no big deal.
I went to a cardiologist in a town I live in and he says I do in fact have something wrong with my autonomic nervous system, but he can't figure out how to treat it, so he sends me to Indianapolis. I see 2 cardioligists in Indianapolis who don't really know anything, but are doing what they think they know they are doing. The whole time, I am getting worse. Knowing that this isn't going well. Losing most of my function. Getting a wheelchair because now I can't stand up longer than 5 minutes. Getting put in the hospital constantly, etc. So I go on some of my support groups and find a guy who is in Indianapolis who is listed as a POTSy
approved doctor. HyperPOTS (postural orthostatic tachycardia syndrome) is one of the subtypes that I've been suspected to have, along with regular POTS, NCS (neurocardiogenic syncope), and possibly PAF (pure autonomic failure). Anyways. So I call this doc and he has a 6 month wait, so I wait.
So my appointment with him was Monday. And he was awesome.
At first, he was asking me how I came to the conclusion that I had dysautonomia and I was telling him all my history and he said something to the effect of just because you feel dizzy when you stand up doesn't mean you have dysautonomia...and I was kind of like, oh great, I'm screwed, again. I had just gotten out of the hospital for 3 days the week before and really, really needed this guy to be awesome.
So he kept asking questions. And then came over to do what I thought was just orthostatics (where you usually do blood pressures laying down, and sitting, and standing to see how your heart rate and blood pressure react to position change--hence the name postural orthostatic tachycardia) anyways...I got nervous again because when he started I was sitting so I knew we wouldn't get a good baseline since I wasn't at my most relaxed laying. He did the sitting, then had me stand up...
Then he did something I've never seen, and the people I've talked to since then with dysautonomia have never seen. He twisted my arm some weird direction and inflated the BP cuff all the way and put a clamp on what I think was my AC vein and started deflating it some but not all the way and listened to my blood pressure and did some weird inflation and deflation things but never all the way out or in and only like one pump at a time...it was weird and I wasn't watching or paying attention because I thought he was just going to do regular orthostatics. But anyways. All the sudden he goes, sit down now. I said, why. He said, because you're about to pass out, duh. So I sat down.
Then a miracle happened.
He goes, "yep, I'm a believer, you got it bad, in fact, you might be the worst case I've ever seen."
Then, I just start laughing hysterically...
He asked me why I was laughing. And I said, I've been to about 20 or more docs (including other specialties ruling other things out), over a period of 7.5 years after feeling bad for 12 years, with people thinking I'm crazy and a wimp or a weekling and you just told me I'm not crazy for the first time. You just validated me for the first time in my life. You just said that I'm not a liar.
He said, yeah, but I said you have a really bad case...and I said I don't care, I have a case. Period.
Then we talked about treatment. We are starting over. We are taking me off all my heart meds that control rhythm and blood pressure for a month to see what I'm doing by myself (to try to see which type of dysautonomia I really am identifying most with). Then we will reassess after that. We are putting me on florinef which is a mineralcorticoid that helps you retain fluids which helps stabalize blood pressure and heart rate supposedly and we are keeping me on my IV fluids for now.
It's going to be a really long, hard month off my meds cold turkey, on the new med (that I was on a long time ago and reacted horribly to--but we are trying again just to make sure), and having 9 days of clinicals in there including 5 days where I have to drive a little over an hour each way and work 8 hours so it's an 11 hour day...long month...plus 6 treatments or doctors appointments in there. But. We are getting answers. And I am getting help.
And it's help from someone who know's something and validates me. He even knows the magic words to use to validate someone with this condition. He told them to me when I was walking out of his office. He looked me straight in the eye and said, "Megan, you aren't crazy, you have a horrible condition, and I'm going to do everything I can to get you some quality of life back." He is proposing quality of life. Even if it's 20 minutes of quality of life, I'll take it. That's an awesome gift. So was seeing this when I got home:
|12 years after onset of nagging symptoms, 7.5 years after onset of debilitating symptoms, it's finally official. I got's dysautnomia y'all.|
"...His validation just made it all the more true. I haven't stopped thanking him since." Marlee Matlin