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. 

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.

If I wanted your opinion...

The other day, I posted some rules and advice for dealing with a dizziness disorder. I admitted already that it is hard for me to follow my own advice. And so, I have no problem letting off some steam while I, once again, do not do what I tell others to do because I know it's right.

I am so sick and tired of trying to "defend" my illness to people who feel the need to try to diagnose me or my symptoms with NO knowledge whatsover about what they are talking about.

It should not bother me at this point, but it does. Terribly.

First of all, I feel like crap when I'm told by people that my symptoms must be psychological because they are happening at such-and-such a time. For example, my mother says the motion sickness and disorientation that I am experiencing in the car must be psychological because it is happening since I started driving more and working a little bit.

I try to explain to her that 1) These and other problems happen all of the time throughout the year and when I also have nothing going on. They happened all those years I wasn't driving or working at all. As they have been happening over the past 13 years. So for them to happen now isn't any different.

And 2) One of the things that triggers symptoms is stress. Any kind of stress, not just emotional. Physical stress, mental stress, dietary stress, overstimulation, overexertion, overtaxing, and just plain overdoing it. So, when I go from being inactive and working at my own pace at home, where everything is familiar and I have very few deadlines to working, driving around, adding myself as a means of transportation, trying to learn an unfamiliar area, deadlines, demands. This is piling on every stress at once. Seems obvious to me.

Of course, I know my mother also considers that I have a past history of emotional issues. Yes, yes I do. So many of them pertaining to this very same illness, particularly at the beginning of it, during all the years of misdiagnosis and mistreatment, and when I came to realize that I probably will have this the rest of my life. I also had other issues that I was dealing with along the way. Let's just say it's hard to maintain healthy relationships, friendships or habits when you become so incapacitated and, as a result, depressed, anxious and hopeless.

People, in general, are under the assumption that those who suffer any kind of mental difficulty are not worthy of being counted as whole people. That having, say, obsessive-compulsive disorder or panic attacks means that every physical symptom that person feels must manifest from a place in their head, not to be taken seriously.

And so, because I've been depressed, my complaints surely must be psychosomatic.

It really sucks to be treated in this manner. But it doesn't stop there.

Because I was depressed, not only are my symptoms in my head, my entire vestibular disorder is in my head. Despite the medical opinions of several specialists who are in agreement, after testing and treatments. That all doesn't count, because I was depressed. Over getting sick in the first place.

What makes people think it is alright to talk about my illness like they know better than myself or my doctor? And I don't buy the "because they are family" line. I'm not going to ask my mom how her gynecology exam went. I understand boundaries. Some things are personal. Some lines shouldn't be crossed.

It hurts to be told I should go to therapy to deal with the "problems" which cause my balance issues. If only I could heal my vestibular system with talking. I'd be on a couch tomorrow. Can a person "talk" their broken leg into getting back together? Or "analyze" their high cholesterol into resolving itself? This is different how?

Surely not because stress makes it worse. Stress also makes diabetes worse, high blood pressure worse, migraines worse, PMS worse, colds and flu worse. Do people who deal with those ailments get told they have to go to therapy? This is different how?

Because it's invisible? There actually are tests which can help to diagnose BPPV, Meniere's, and other vestibular conditions. How do I know? Because I TOOK them. I wasn't just RANDOMLY treated.

I also happen to keep myself informed. I read about vestibular issues and I speak to others who also suffer from them.

NO MATTER HOW many times I offer this as validation of my physical illness, I encounter flak.

It's frustrating as hell.

Not sure if I feel better now. Still, it had to be said.