It all comes together

I don't know how many times I've seen that Botox commercial.

But, that night, as I listened to the announcer warn about the possible harmful effects of using the toxin, one thing jumped out at me - difficulty swallowing.

I heard something else about how the symptoms can take days to weeks to appear and then I was really intrigued. I had to read further. I consulted Google and found more of the same. 

That one piece of information was golden. It solved a major piece of the puzzle that had been my dizzy journey. 

It set in motion more research, which about sewed up the loose ends as well. But first things first. The swallowing.

When I first started with the dizziness and balance issues, my facial muscles would constantly move. My jaw would work itself back and forth and my right eye would continuously close. Although it clearly became worse when something would startle me or make me more dizzy, at the time, no doctor understood or could explain it, let alone treat it. We decided to try something unconventional at the time. I went to a practitioner that my husband at the time had a lot of faith in, because she treated a variety of problems, and was starting to work with Botox in her practice. She was not a vestibular specialist, or a neurologist or an ENT. All I knew about her practice was that she had treated my husband for weight issues. But she was willing to try the Botox and I was desperate enough to try anything. 

I remember getting some relief from the Botox; its paralyzing effects had helped curtail the movements at least. I seem to remember going for more than one treatment. Because this wasn't her area of expertise, she had to figure out how much toxin to give based on what results she expected. I completed my shots and that was that. Or so we thought. At least now I know.

The difficulty swallowing seemed to happen all at once. This was all so long ago, and I've lost many of my journals from back then, so I couldn't say how long it had been since I'd had the Botox treatments. At the time, that didn't matter, because the Botox wasn't even on our radar when the swallowing problem started anyway. All I knew was suddenly food didn't want to go down my throat. And when I got something down, my throat muscles would keep moving in a swallowing motion. It was terrifying. We had gone to the ER, but the staff there treated it first like an allergic reaction, then, when Benadryl alone wasn't "calming me down," they attributed to panic. Common assumption when it came to most of my symptoms. 

Doctors didn't know what they know now about Botox's effects. Hell, I found it difficult to find a practioner who was willing to try it with me. I can't even say for sure if she was a doctor. 

For years this remained an anomaly in my medical history.  Nobody could figure out why it happened, so it was set aside for the most part.

Then, the commercial. The research. And that part of the puzzle was filled in neatly. But then, I needed more. I had to have the rest. 

I started with the diagnosis given to me by the first ENT to test and treat me, labrynthitis. Considering how quickly the dizziness and loss of balance came on, it still fit, although it does suggest a loss of hearing as well, which I did not experience.  My primary physician at the time had originally given me a slightly different, yet more accurate diagnosis of vestibular neuritis. Vestibular neuritis produces similar symptoms to labrynthitis, but without loss of hearing. All would have been fine and dandy right then, but nobody seemed to know much about the condition at the time. At least none of the many (and there were MANY) healthcare professionals I had the misfortune of bringing myself to.

It took about 14 years of doctor-hopping, therapies, tests, medications and endless dead-ends, research, tears, prayer, and self-doubt for me to pluck the answers from the mistakes and misinformation. But the answer I was looking for was actually there from the beginning. It was just so simple (and complicated) that it was ruled out so long ago. 

The vestibular neuritis, the original diagnosis. At the time, I was told I was "taking too long to recover" so it had to be something more. My doctor was loading me up on Valium and when I wasn't sleeping, I was dizzy. She figured that there was nothing more she could do for me, and sent me to one of countless specialists who would examine me and incorrectly treat me for illnesses and disorders I did not have. 

So many years. So many doctors. Nobody could figure this thing out. I was told over and over again that I may have originally suffered labrynthitis or vestibular neuritis, but neither of those were chronic conditions, nor should they be coming and going as they were, nor do they cause any symptoms but the classic dizziness, loss of balance, etc.

I have learned that all of these assumptions about these conditions are completely false. 

Both vestibular neuritis and labrynthitis can become chronic conditions. Their symptoms can intensify and lessen and can occur as sudden attacks. People who live with these on a daily basis can suffer a myriad of symptoms beyond dizziness including headaches, difficulty concentrating, widespread body pain (from the body's constant "micromovements" which attempt to deal with being off balance), depression, difficulty walking, vision issues, etc. 

So, do I really have migraines, depression (or bipolar depression, depending on the doctor) and fibromyalgia? All of these diagnoses came AFTER the vestibular neuritis took over my life. That may explain a lot of things.

I do seem to recall a couple of doctors down the road who did acknowledge my dizziness, but insisted on calling it BPPV (benign paroxysmal positional vertigo). While they were not incorrect, they were just not being complete. The BPPV is secondary to the vestibular neuritis.

I have found good, reliable information from places like VEDA, and support from others who have been down a similar path as I. I also was fortunate enough to have found a few doctors and therapists who knew something about chronic dizziness. I have to say, though, it was hard. Really, really hard.

It still is hard. 

Nobody still believes or understands what being dizzy all the time is. And people remember a lot of the misinformation the old doctors told us. They'll refer to my dizziness attacks as "seizures," or think my facial muscles moving is dystonia. Or worse, they'll think I can just "power through it." Or "if you want something bad enough, you will get better." In other words, it's completely within my control and/or in my head.

At least now I have validation. I said I was dizzy and, dammit, I was dizzy! I AM dizzy! 

And when people ask me, I can confidently tell them that I have vestibular neuritis and BPPV. 

my eyes and the problems they cause me

my vision therapy evaluation, such as it was, has came and gone.

I guess you can gather from that statement that it was quite short.  far shorter than I thought it would be.  initially, they told me that they set aside 3 days for the exam; two days for the testing and a third day for the doctor to go over the results.

they didn't count on me.  always the exception.  great.

sometimes it's a good thing to be done with tests quickly.  this was not one of these times.

the evaluator was simply unable to perform more than two or three tests with me.  why?  the tests require one to have the ability to see in 3-D.  because I have the crossed eye, I simply lack this ability.  completely.  I've never been able to "enjoy" a 3-D book or movie.  no biggie.  it's not like a handicap or anything.  it does impact my vision in other ways, like depth perception (learning parallel parking was a nightmare!), but, still, this is not a big deal in my life.  since I was born this way, my brain has learned to compensate and I move about in my flat little world.

however, it did bring the testing to a screeching halt.  so, day one of testing was compacted into about 30 minutes.  day two of testing turned into me talking to the doctor about day one and playing around a little bit with some prisms.  there was no need for day three.

so, the doctor basically told me that I have three options as far as vision therapy goes.  option one is to get surgery to fix my eye.  he doesn't do that, but he could recommend someone who does.  then, I would get therapy to go along with the surgery.  I wasn't too keen on option one.  I like my eye.  I don't want to take chances with my eyesight.  I don't know anyone who had success with this.  In fact, I know people who had this surgery and had their eyes be worse off afterwards.  I just read this article about the surgery and my stomach has not stopped lurching since (and this is just the facts, not any horror stories whatsoever):
Eye muscle repair So, I think option one is out.  I've lived with a crossed eye for 44 years.  I think I can live with it for another 44-whatever.

option two is to do nothing at all.  I kind of feel that this is not an option, either.  very often, I find myself hitting walls in balance therapy (not literally!) because the therapists are telling me that certain things I need to work on fall under the auspices of vision therapy.  ok, vision therapist, therapize me!

option three, then, is to come to him for vision therapy.  and that means many things.  working with prisms to try to straighten the eye (if we decide to go that route).  I did tell the doctor that, while it would be nice to learn to park without hitting other cars and objects and to go through fast food drive-ins without taking my side mirrors off (ok, so I haven't completely learned to compensate with my lack of depth perception!), correcting my crossed eye isn't as important to me as addressing the real reason I came to him in the first place; to desensitize me from the things that make me dizzy.  flashing lights.  sudden objects in my visual field.  busy stimulating environments.  can he help fix those?  it was a little difficult to get him on track there, but he seemed to be saying yes, he could.  I mean, he was the guy my neurologist referred me to in the first place.  I have to believe he can help.  he's the "eye guy..."

he sent me home with some insurance paperwork to sign and return and had me talk to the therapist to set up my first appointment after I confirmed that my insurance covered his services.  I have to admit a feeling of leeriness.  it's a money thing, and I hope he knows what he is doing.  something just feels...odd...maybe it's just change.  I do have a hard time trusting people.  I guess I'll give it a go and see what happens.  first appointment in a few weeks.