Feeling so much better today!

I saw a new Neuro this morning, and I am walking away with MUCH more hope than I had yesterday. She flat out said that autonomic dysfunction is out of her scope, but she in no way discounted my suspicions. She is going to treat my migraines and vertigo starting now, and she is sending me for the testing that is available in this area for vertigo and memory loss, including an MRA of my head and neck, an EEG, neuropsych testing (it makes sure each section of the brain is functioning, it doesn't ask how you feel about that). She is sending me to a specific ENT that treats her friend and husband for vertigo, and who will refer me to Iowa City if need be. Once we get this out of the way, if I am still having problems, she will refer me to Chicago for autonomic testing and treatment. She is LOOKING FOR AN ANSWER, and I didn't even have to beg.

I'm going to scream and scream and scream until I can't scream any more.

I had my tilt table test, finally, this morning. Before I got there, my heart rate and blood pressure were being wonky as usual. I had high hopes. But during the test, my blood pressure stayed a nice, steady 120/80 and my pulse stayed a steady 80 beats per minute...for a full thirty minutes.

ANY other freaking time in my life, my bp and hr will change quite a bit during any given five minute period, let alone when I go from laying down to standing. But this time? This very, very critical time for it to be wonky? The picture of perfect health.

So, we're going on 22 months without a diagnosis. Going on 22 months without being able to drive, work, read a book, think, or do anything even slightly physically demanding. This is frustrating as hell!

Afraid to hope...and I hate it.

Like I said in a previous post, I used to be a fairly positive person. So it kills me now that being hopeful is so scary.

I recently had some labs done. My regular family doc wanted to make sure that we'd covered all of the bases on things that could be causing my symptoms. She included a test for Vitamin D. It turns out that I'm deficient. In fact, I have less than a quarter of the LOWEST amount one should have in their blood.

Could something this simple be causing my symptoms? Could taking a supplement return my life to me? Or am I deficient because the illness prevents me from going outside much? It's crazy how light-sensitive my eyes have become, and it's impossible for me to go out and do "normal" things in the sun because of my balance problems. Which came first? The chicken or the egg?

She put me on a pretty high dosage of Vitamin D supplement, and we'll retest in 8 weeks.

I know that attitude is important when dealing with chronic illness. I just don't know how willing I am to hope this is going to end my health problems. I've hoped so many other times - usually before tests, or before seeing yet another new specialist - only to be let down. I'm not sure how many more let-downs I can take.

I'm here! A "quick" intro...

So hi there. I'm here! I showed up to my own party! Lemme get this out of the way first: my counselor suggested that I start a journal to record my journey with this weird mystery illness that I seem to have. She says I'm insightful, and that it may not only help me, but may help others as well. So I decided rather than use a regular pen and paper, I may as well take the easy way out and make it a blog instead. Whether or not I am insightful, I do know from experience that writing things out can be awfully cathartic. If you choose to continue reading, be warned...I will most likely complain. A lot. That's one of the things this mystery illness has done to me. I used to be a positive person. I'd like to think that positive person is still in me somewhere, but if she is, she's hiding well.

The only way this is going to make any sense to anyone is if I give a quick history. Let's see how condensed I can make 20 1/2 months of this experience, shall we?

June 14 or 15th, 2012, while I was just sitting there, not doing anything exciting, I felt and heard a POP in the back of my head, and I instantly felt dizzy as hell and nauseous. Boom. To the ground I went. I crawled to the living room and managed to scrape myself up off the floor and onto the couch. I've been dizzy ever since. I suspect it was due to a middle ear infection (though that doesn't explain the popping sound), and that the virus triggered something known as autonomic dysfunction, or dysautonomia. Nobody knows what exactly causes it, but it is known that illness can set it off. Unfortunately, it affects almost all bodily systems, and finding a doctor who is well-versed in it in my area appears to be impossible.

Since that point in time, I've developed more and more symptoms - ranging from the inability to urinate immediately, to numbness and tingling, to not being able to think, to having my vitals go all wonky. I've seen two family doctors, an ENT, three neurologists, including an otoneurologist (one who deals specifically with ears and vertigo issues), two audiologists, and a cardiologist. I have had an MRI of my brain, an MRI of my c-spine, a CT of my sinuses, VNG testing, a hearing test, a sonogram of my thyroid, a couple of EKGs, an echocardiogram, a stress test, and a 48 hour Holter monitor. I have a tilt table test ordered, but it isn't scheduled yet. I've had a whole mess of labs drawn as well. Thank the heavens my wife has a state job that provides great insurance! So far, the only diagnosis anyone is willing to give me is migraine associated vertigo or vestibular migraines. I think they are full of shit. I have an appointment scheduled with yet another neurologist in March. Cross your fingers!

Meanwhile, I am a gravity enforcement agent. In other words, I hold the couch down. . I haven't been able to work since June of 2012 when it all started. I'm rarely able to be up and moving long enough to accomplish simple tasks like doing the dishes or cleaning the house. All sorts of things set the dizziness into overdrive, and it makes pretty much all aspects of life difficult.

I've been robbed of many of my previous hobbies, but I'm starting to pick up others. I started tattooing last year, for instance. Unfortunately, I can't draw for shit, so I'm stuck with finding pictures that I can trace and then tattoo. I'm thinking maybe I'll try to learn how to draw. It's something to do. And if there's one thing I have, it's plenty of free time.