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. 

Convergence Insufficiency

I was born with a crossed/lazy eye.

My parents tried to get this corrected. They took me to several specialists, a few of whom suggested surgery. My parents were against eye surgery because, well, it's eye surgery.

They went with more non-invasive correction, such as patching the good eye or putting drops in it to blur the vision in order to get the weaker eye to work harder. But surgery was out of the question.

As far as anyone really knew, this was a cosmetic issue.

I'm sure my parents were told that I may see double some, but that my brain would figure out how to suppress the second image over time and see one image.

For the most part, that is true. And, considering how much was really known about eye surgery when I was a kid, I fully support their decision to have done what they did.

My eyes did, indeed, learn to make one image most of the time. At times, I do see double, but usually there is just one image of what I am looking at.

It is not always spatially "correct," but it is still one image.

So, what I didn't know was that, all this time, I was fighting convergence insufficiency.

I started to learn a bit about this in visual therapy. Basically, yeah, my eyes HAVE learned to see one image most of the time.

But it takes work, man.

Sometimes CONSCIOUS, DELIBERATE work.

Like, if I am having a conversation, my eyes will dart all over the place trying to fight for dominance.

Or when I am reading! Ugh! I love reading, but I hate it, too.

It's PHYSICALLY EXHAUSTING and UNCOMFORTABLE!

I really never say anything about it because I didn't know this was even a thing.

I just thought I was a distractable person.

More fuel for the dizziness fire, I suppose.

dizziness and fibromyalgia...who knew?

It has been awhile since I've blogged, not because I am suddenly "well," but because things have been pretty much the same.

Sort of.

The dizziness waxes and wanes. I guess that's just the way it is going to be.

On the other hand, my fibromyalgia has been horribly horrendous lately.

I had a 3-week migraine-a-thon around Christmas where, literally, every single day I had a headache - and most of those days it was at migraine level.

That pain seeped into my neck, then into my shoulder, where it has been living quite uncomfortably.

I went to a few days of physical therapy. After some major snow storms, that kind of fell by the wayside.

I'm chalking all that up to "typical" fibromyalgia.

I've also developed a new agony - gum and jaw pain.

This, too, appears to be a fibromyalgia-related ailment. Not as common as migraines and muscle pain, but fibro patients do complain of this type of pain, so.

As I learn more about fibromyalgia, I have become aware of another common symptom:

Dizziness.

Isn't that interesting?

I was diagnosed with fibromyalgia about 2 or 3 years after the vertigo first invaded my life. However, I remember having fibro symptoms several years before that. In fact, I have found old journal entries where I wrote about debilitating fatigue and body aches which were taking place way, way before the first vertigo attack.

So, which came first?

It is true that many who have chronic dizziness develop fibro or fibro-like symptoms from the body's constant fight to keep balanced and make sense of the mixed messages that it gets from the brain versus the world (very detailed explanation here).

However, I remember being sick before the dizziness. IF this dizziness is from the fibro, that is.

I hate that it is such a mystery.

Health Rundown

Lately, I've felt a little like a health project.

At the end of August, I had minor surgery on my elbow to try to correct numbness in the fingers in my left hand. The surgery is called cubital tunnel release. The recovery has been pretty fast, but the numbness is pretty much the same. It can take up to a year for the numbness to subside, or it can stay the same. Thing is, without the surgery, I was risking further numbness and wasting to my hand, so I had to try it.

Tomorrow, I have an EMG for both of my hands because of pain and more numbness. I had had a carpal tunnel release in 1997 in my right hand which seemed to help for a while. Apparently, though, carpal tunnel syndrome can return. Or something.

So there's that. A few days ago, I had an endoscopy and colonoscopy because I have had constant heartburn and acid, no matter what I ate. I already know I have a hiatal hernia, which I had been diagnosed with over 20 years ago. When I woke up from the procedure, the doctor told me I have a small ulcer in my small intestine. Why not, right?

Aside from all this, I have an upcoming appointment with an orthopedist to check out my neck. I've talked before about the issues I have with compressions on my vertebrae or whatever I have. My neurologist has not been a tremendous help. In fact, I can't get an appointment with my neurologist at all, just the nurse practitioner. Not to minimize nurse practitioners, but I am not convinced she knows what to do with this condition. She keeps changing the information about it; it's serious, it's not. It can affect this, it can affect that, no it can't. I just don't think she knows. The office won't let me see the doctor. Just weird. So I'm going to an orthopedist. Let him check out the situation.

And I am going to go to a pain management center for my fibromyalgia. I have also been seeing that nurse practitioner for the fibro, but, well, same story. She's also been monitoring my migraines. The pain center should be able to handle that as well.

The balance issues have been status quo, I suppose. Don't move my head fast. Don't let myself get too hungry. Don't bend too quickly. Stuff like that. It is a part of me.

That's my wobbly life for now.

So this.

This is how I feel sometimes.

Every day...same old same old.

Perhaps it IS all in my head...

Guess you can tell I just had another conversation with Mom.

"You know, Karin, your motion sickness and dizziness in the car is probably anxiety about driving."

(because, you know, she suffered from panic attacks when she was younger. so that MUST be it. never mind the fact that I had a job where I drove all over the county and had NO problems then. and I used to work in a school that was a 25-minute (easy) drive away from my house when I lived in South Carolina. AND I have driven a 15-passenger van. CLEARLY I am anxious about driving!)

"You know, if you try you can overcome this."

(overcome WHAT? a physical condition that I am suffering from? MAYBE if she tries really hard, she can see out of her blind eye? I mean, if it could work for me, it could work for her!)

"Because you know, not driving is SUCH a disadvantage!"

(what do you even say to that? that I am less of a person because I don't drive much? I don't know, when someone gets dizzy in a moving car, PERHAPS driving is not the best idea. HOWEVER, I am a smart and resourceful person. I can figure out what to do to get where I need to go.)

Just for the record, I don't get in the car expecting to get sick or dizzy. I get in the car with my destination in mind. I don't worry about it, I just go, as a passenger OR a driver. It just happens. Sometimes, not every time.

But enough of that stupidity. I had a visit with the neurological nurse practitioner last week. First of all, SHE took my symptoms seriously. She told me it is COMMON for people with my condition to have these issues.

She prescribed Neurontin for me to try. So I am trying it. Guess what? I went in the car a few times and realized LATER that it helps! As a passenger, at least. I think I drove once locally since then and that was ok, too. I haven't tried a long trip yet.

ALSO, she told me that the nature of my illness comes from an issue with my brain stem. I have NO idea what that means. So I looked it up.

I don't know if they are calling my condition migraine-related vertigo (which is in the brain stem) because I DO have migraines, OR if there was something else that messed with my brain stem. Like a stroke. Because, you know, when I first got sick, it came on suddenly AND I had problems swallowing AND I couldn't walk.

<shrug> sounds like it's something, though. And it IS in my head, right?

Carving Out a Life for Myself

I have had to make some adjustments in my lifestyle.

I tried driving; at this moment, I get nauseous and dizzy if I am in the car too long.

I tried getting jobs; it seems almost anything I try makes me dizzy and exhausted.

It's stupid, really.

It's not like I have some ominous disease. Yet the vestibular issues combined with fibromyalgia make my life difficult.

So, I have been trying to work around them.

I stay out of the car when at all possible.

And now, I have been working a lot from home.

I do online tutoring and freelance writing.

I work very hard for my money. I just do it in my bedroom (wow, that sounds bad!).

I will go to the neuro on Friday to talk about the motion sickness. However, I don't think there is much they can do.

The one thing I miss is socializing.

I need to find some online communities that I can call home.

Facebook ain't it.

I don't have anything against Facebook; I just feel like I am outside of everybody's world there. I guess because mostly all of my Facebook friends have actual lives.

I will figure this part of my life out, though. I managed to figure out the job part.

Eventually, I will have something close to a life.