It’s all apparently uphill from here

Vestibular therapy again today. My normal therapist was out so I worked with someone else.

She watched my balance issues and my body’s responses to exercises and basically said what my other therapist said: that this is not normal vertigo stuff and hopefully the neurologist could figure out what is happening.

She asked me if I have a family history of MS or Parkinson’s (I do not). She feels I should be thoroughly checked for either of these.

I still have an entire week until I see the neurologist and this is frustrating to say the least.

Oh yeah, my walking is actually getting worse, too.

I’m honestly not even afraid of what it can be. I’m more afraid of no one finding out what it is.

Vertigo is a liar

Being dizzy warrants a great deal of laying-down time.

Pretty much all day, every day.

With something supporting your neck and head.

And then, for the most part, you feel “normal.”

Even guilty. Like hey, I’m not really sick. I’m feeling just fine now.

So you get up. And you remember.

Sometimes, vertigo lies long enough for you to actually do a life task. Like do the dishes or cook a meal. Or, God forbid, take a shower.

But it always reminds you. It’s still around. And it will rock your world and pull you to the floor and make you wish you never got out of bed.

You’d think this being my fourth? fifth? time at the rodeo that I would be wise to vertigo’s tricks, but I actually think it’s worse because I’m just impatient for it to get better. Those other times I was hopeless and was sure it would last forever and now I just want to get on with my life. I miss my job and my friends and driving and not friggin being dizzy!

Vertigo, you have made your point. You’re chronic. I get it. Go away now. I’m getting bored being home.

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.

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?

dizzy rules

I haven't written in a while because things have been stable. And by stable I mean pretty good.

Yes, I have symptoms every day, but that seems to be the way things are.

I used to think that 13 years is a long time to be dealing with chronic dizziness, but I have talked with people who are into 20+ years with it.

In order to keep things from getting too out of control, I have to live by a few rules. I'm sharing them with all of you, especially those in dizzy hell with me. They are:

1. Don't turn your head too fast. Just don't. No matter what you hear or see. I break this rule all the time, especially when I drive because I need to see my blind spot when I pass people.

2. Don't get up and down too fast or too much. Usually doable, but sometimes I still forget.

3. Don't bend if you can possibly avoid it. Makes doing housework, shaving my legs and putting on footwear quite difficult.

4. Don't nod along to people when they are talking. A VERY hard rule for me to remember.

5. Avoid extreme temperatures and weather. Both searing hot and freezing cold temperatures will get my symptoms going. Forget wind. Wind is not my friend. Especially freezing cold wind. Rain? Rain is not the greatest, either, particularly when it falls on my head. And the atmosphere is not comfortable before and during rainstorms. Ice and snow on the ground is a joke. I keep threatening to move South just to avoid snow. However, then we have the extreme heat, so how do you win?

6. Avoid overly salty meals, especially with foods containing MSG. I adore Chinese food. However, no matter what restaurant says that they cook without MSG, they do anyway. Trust me on this one. Also on the "bad" meal list are foods like ham, hot dogs, chips, pretzels, things like this.

7. Avoid too much caffeine. I used to avoid all caffeine, but I missed my coffee in the morning. Sometimes it affects me more than others. I have to live with this or go back to cutting out all caffeine again. Don't even mention cigarettes. Of course I am supposed to quit, for obvious reasons, but also because they are another no-no for people with balance issues. And I haven't. That's my bad.

8. Get enough sleep. I am also living with fibromyalgia and migraines, so I NEVER get enough sleep. Too much sleep is not enough sleep. However, if I get less than I am used to, I can count on having the next day being horribly symptomatic.

9. Avoid alcohol. Another treat I have to limit. I get the spins if I have more than say, two drinks. Sometimes even at one. I pretty much don't ever drink anymore. That one is just not worth it.

10. Try not to get too stressed out. This one is a complete joke. I have a lot of stress in my life (who doesn't?). How do you cap that?

11. Avoid busy environments. Like grocery stores, warehouse stores, malls, arcades, carnivals and such. This really limits where I can go and how long I can stay there. And I truly used to enjoy all of those places. Forget carnival rides, even the merry-go-round (it goes in circles). Oh, any EVERY concert these days has the potential of having a light show.

12. Don't let anyone touch your face or head. Number one, I have kids. My little one especially is always touching my face or my head. It's like a magnet for her. Number two, I work with people with autistic spectrum disorders. They, too, often touch my face. While I can explain to my daughter not to do this (whether or not she remembers is another story), I can't usually explain this to most of the individuals I work with. Other people seem to want to touch my face and head, too. I don't know why. Maybe I just missed the memo.

14. Don't let anyone point in your face. See rule #12.

15. Don't let your blood sugar get too low. As fat as I am, my appetite is like a canary. I go through most days eating one meal, sometimes two. Don't do this, if you can possibly help it. It is a double problem: if you don't eat, your blood sugar drops and you get dizzy. If you wait too long THEN eat, your blood sugar spikes and you get dizzy. I'm working on this one.

Imagine going your whole life like this. Perhaps some of you already do, especially my fellow dizzies. No fun, is it? However, along with these rules, keep the following in mind (it may help maintain your sanity):

1. One bad day does not equal the rest of your life. You may have been symptom-free for weeks, months (years?) and then suddenly wham! you're riding the dizzy train again. Focus on the good days and remember you will be there again. This, too shall pass. (I should get that tattooed on my body somewhere)

2. Try not to take it personally when other people don't "get" your illness. They can't see it. They haven't experienced it for themselves. Many people don't give a damn. Oh, and how many think it's "in your head"? It's so hard to hear that, but you just have to ignore them or try to educate them, and realize THEY are the one with the problem, not you. You simply have a vestibular problem. This is quite easy for me to say, way harder for me to put into action. Still, I know I'm right.

3. You don't have to put up with inferior medical treatment. If you have an unpleasant or uninformed doctor, nurse practitioner or physical therapist, find a new one. If you have to go through a dozen medical professionals until you find the right one, by all means do so. Of course, sometimes insurance, finances, time and distance play a role in this. Still, if you can remedy this problem in any way (like seeing a different doctor or therapist in the same practice, for example), it's worth it. YOU are the reason THEY have jobs in the first place, and when they lose sight of that, it's time to move on.

4. You are not alone. You may have never met a single soul who shares your vertigo nightmare. Believe me, though, we exist. Before I got dizzy, I knew exactly one other person who experienced the same thing. For whatever reason (luck was on her side!), she received a diagnosis and good treatment with her FIRST attack. Unlike myself, who took 12 years to get a proper diagnosis and meaningful treatment. At first, NOBODY else had ever heard of dizziness/balance/vertigo issues. I found a few people online, then a few more, then a few more. As I racked up years of dizziness under my belt, though, I have met more and more people outside of the Internet who have had these problems. Or knew someone else who did. I have discovered that more people have heard of Meniere's than BPPV, so I say I have Meniere's. To be completely honest, I don't know which of the two I actually have. Or if it is something in and of itself. Still, it's Meniere's to most people. At least they get it that I have a dizziness problem.

I hope I have helped at least one person understand this condition more. I can't give professional medical advice, but I can pass on what I have learned. If anyone wants any more information, or just support, I would love to hear from you. Be well and hang on. Literally, hang on to whatever you have to. I do it every day.

why are we settling?

so I had an appointment today with the nurse practitioner.

this is with the practice that diagnosed my balance disorder and now treats my migraines and fibromyalgia.

they also track the balance disorder, but basically feel that since I've been through balance therapy and, since I've had it for so long, there's nothing more to be done.

however, I think that is a load of crap.

and I'll tell you why.

they've only recently diagnosed this disorder (well recently in the scheme of things considering how long I've had it) and I've had a whole lot of improvement since they have AND ALSO

since then they also discovered that I have herniated discs in my neck.

now, the nurse practitioner gave me this little gem today.

she said that "most people have herniated discs and have no problems with them."

may I take the time here to call bullshit?

seriously now.

they discovered these herniated discs in my neck, not on accident, but because I was HAVING PROBLEMS WITH MY NECK SO THEY DID AN MRI!

she said that, unless the herniated discs press on nerves, do they cause headaches or tingling in the hands.

DOES SHE EVEN LISTEN TO THE THINGS I HAVE BROUGHT UP IN MY VISITS?

I have been going there for at least a YEAR for migraines and telling her that the migraine medicine does not work.

and, I have gone for an EMG IN THAT OFFICE for TINGLING and NUMBNESS of my hands, which has gotten progressively worse.

can somebody please tell me how what I said is DIFFERENT from what she said?

ok, so she decides that I can see pain management for the treatment of my migraines (I guess that's what I'm going for pain management for...I am still planning to bring up the whole hand tingling thing to them anyway), and that will involve shots in my neck or shoulders, so that is listening to me, I guess.

then she does my neuro part of my exam and that makes me dizzy.

it's the looking down that does it.  doesn't that say something?  it's still my neck.  why can't someone put two and two together????

it happens on a delay, too, not immediately, but within, I guess 4-6 seconds. and lasts quite a while.

it comes in waves, too.  awful.  thinking about it makes me want to get dizzy again, but I'm fighting it.

I don't understand why I can't discuss these issues with a neurologist, you know?  why do I have to keep having a nurse practitioner GUESS at these things?  it's really pissing me off!!

every time I TRY to make an appointment with the neurologist, the staff tells me that I am just MAINTENANCE and that I only need to see the NP, but I don't feel that this is accurate.

I don't know about other patients, but I have had this vestibular thing for almost 13 years.  that's a HELL of a long time to be dizzy.  we are talking almost ONE THIRD OF MY LIFE.  I am sick and tired of being dizzy, to be perfectly honest.  and I imagine, so is everyone around me.  it's draining physically, mentally, emotionally and financially.

so, WHY IS IT that MY issues are less important than any other patients?  I am not what I would call better.  I am not satisfied with the extremely casual attitude the NP had today when she said to me, "some people have vertigo for a very long time."

it has not even been considered that my vertigo is coming from the problems in my neck.  I have been to physical therapy for neck MANY YEARS AGO.  WHY IS NO ONE CONSIDERING THIS??  HOW DO I GET SOMEONE TO LISTEN?

I guess I'll try the pain management doctor, but who knows?  this is almost, but not quite as frustrating as when I had no diagnosis at all.

and, from what I see from others like me, it happens all the time. our issues are, somehow, less important.

go on any vertigo message board and you'll see dozens of frustrated people just like me. or worse. it sucks.

then again maybe not...

so, I took a part-time job.

it was a seasonal job at Target.  I figured it was a good way to get my feet wet in the workforce.  and, if it didn't work out, 1) it was seasonal, so it didn't matter anyway and 2) it wasn't in my field, so it still didn't matter anyway.  but if it did work out, they were hiring a few people to stay on, so I would have a little job, and we needed the money and I am going crazy being in the house.

but, if you noticed in my second sentence, I used the word, "was."

I had had the choice of cashier or sales floor when I got hired and, considering my vertigo, I figured sales floor was a better choice because I figured standing in one spot for hours and hours would not work out and at least with the sales floor position, I'd get to walk around the whole time.

well, was I sadly mistaken.

I may have been right about the standing in one spot being a bad thing, however, I had no idea what the sales job actually entailed.  I found out.  and I didn't last past 2 days.  3 if you count orientation.

I had to constantly walk and put things on the shelves all day long.  walk.  bend.  stretch.  lift.  walk.  stand.  walk.  bend.  walk.  you get the idea.  about 2 1/2 hours into the shift, my feet hurt so badly, I wanted to scream.  By hour 4, my head was swimming.  By the end of the shift, I am not quite sure how I managed to get myself out of the store, but every nerve in my body was on fire.  fibromyalgia, vertigo, and just generally being out of shape...bad combination!  Especially for a job like that.  I thought if I tried again, I might work myself up to being able to complete the shift without pain.  It was just as bad though, if not worse.

although I felt guilty about it, I had to let the job go.  I still feel like I've been hit by a truck, but I'll recover.

I spent all day today looking for some other kind of work.  something less physical.

oh, and I drove the other day, too.

baby steps.  I'll get back to being me, I think.

I eat, therefore, I crash...

I guess this shouldn't be as startling as it is.  it just came up so suddenly.

Stacy and I have been eating so well.  as I've been lamenting, I haven't been losing much weight, even though I've pretty drastically changed my diet.  and by drastic, I mean I've all but eliminated anything white or carb-like or starchy from my diet, almost no sugar (a little in the morning in my coffee...I have flavored creamer.  we tried eliminating that, but coffee was just soooo boring!).  I also didn't give up ketchup when I eat hamburgers.

we have substituted whole-wheat pasta when we do eat pasta, but that isn't often.  we also have learned what a portion is.  we had been eating enough for a small village before then.  those days are long gone.

so, now our meals are basically meat and vegetables with salads.  we eat a lot of chicken.  I'm still not hungry much during the day.  when I do eat, it's cottage cheese, sometimes tuna.  you'd think I'd be 90lbs.  you'd think.

anyway, Stacy had decided that the holiday weekend was reason enough for "cheating."  sure, I was in.  I didn't miss "food food" as much as I missed the other contraband she brought into the house -- ice cream.  even though we had pizza one night for dinner (I didn't eat too much of that), I did eat the ice cream three nights in a row.

this morning, I had my first "drop attack" in months.  it came out of the blue.  one minute, I was letting out the dog, and the next, I was on the floor.  it hurt like hell, too, because I fell on top of a planter (square in the middle of my back).  I was holding a cigarette, too, so it was a good thing Stacy came running.  she said I almost burned my face.  no fun.

so, what have I learned from this?  well, I guess that somehow sugar is related to my vertigo, and, more importantly, my drop attacks.  how, I still don't know.  I guess I know what I have to do, sort of.  keep monitoring what I eat.  obviously it's working.  still, I'm not dropping the weight, though, so it's not enough.  and I still get the occasional dizzies.

my guess is that I need to see some kind of endocrinologist.  but not just any endo.  the right one.  someone who actually knows about this stuff.  this is going to be a hard find.  I'm going to bring this to my online support groups and see if anyone knows of anybody.

I feel like a detective.  eventually, I WILL FIND AN ANSWER.

whose time is it anyway?

and so, Monday was my physical.

I wasn't quite fond of the idea of going.  less so, was I fond of the doctor who was performing said physical.

however, it was suggested by the nurse practitioner at the neurologist's office, that I have a physical done to have different things checked out (I felt like a faulty vehicle), and so I went.

this was my agenda: discuss my horrible joint pain which I think is not just fibromyalgia, discuss my inability to lose weight despite my hardly eating anything, discuss the strange dizziness that isn't my normal vertigo (that the physical therapist said see a cardiologist about (I still don't know about that...), and bring up a, er...personal problem (it's gross, you don't care about that).

this was her agenda: do I get a womanly check-up every year? (I'm a little behind, ok). mammogram? (same, but, for my age, it's not crucial, so back off), and stop smoking (of course she needs to say that).

she was casual, but really casual.  relaxed is ok, but there is a point where, for me, it gets uncomfortable when health care professionals are so laid-back, they fail to be working (almost) and they are barely going through the motions.  like she was saying to me by her actions, "I really don't want to be here, but..." (hey, who does? it is her job, though, make an effort, huh?).

my girlfriend has this saying, she picked up along the way about not taking other people's inventory.  basically, it's along the lines of don't judge people.  I used to be that way.  but I'm becoming more judgmental as I come into contact with more people.  I also find it amusing that she uses that line, because she is one of the most judgmental people I know, but that's ok.  I love her just the way she is.  anyway.

the physical was over and done with in the blink of an eye.  I felt like I was bothering her every time I asked her a question.  I managed to squeeze a few of my concerns in, but not the major one, the dizziness.  she made me feel so disgusted and, well, stupid.  (this seems to be a common theme for me, people making me feel stupid).  it was all I could do to keep in the tears.  I actually couldn't.  as soon as she left the room, they came and I cried as I undressed for my EKG.  Later, I cried even more in the bathroom.  I resolved never to go back to her again.

so, added to the list of doctors who made me feel that their time, somehow is more "valuable" than my time.

to quote Dennis Miller, "I don't want to go on a rant here, but..."

having the letters MD (or DO, as it were, in her case) at the end of your name, does not make seconds, minutes or hours have any more value than anyone else.  you may make more money than other people, but, at the end of the day, we all have the same 24 hours in a day, the same mundane tasks to perform during them (everybody eats, sleeps and goes to the bathroom), and, eventually, every single one of us will die.

yeah, that's where she took me.

this whole journey, this being a patient thing, this going from a "healthy person" to a "less-than-healthy" one and seeing doctor after doctor, healthcare person after healthcare person has made me so damned sensitive to, well, everything, every part of the process of getting a person healthy; the language that's used, the atmosphere in which one is treated, the timeliness of getting results, the amount of support available.

it seems to be lost on me.

first of all, my condition isn't life or death.  it's life-affecting, but I'll live.

second of all, NOBODY CARES, or seems to.  maybe because of the first thing I said.  and also probably because the percent of people it affects like me are small.

third of all, what I am going to do with this information?  even though I realize that this stuff applies to people not only with balance disorders or fibromyalgia, or whatever else I may or may not have (or the people I've worked with...they've been treated quite poorly as well), and this is a far-reaching problem, I am not sure how to get my voice heard.  I feel like I'm one person, one small voice yelling in a throng of so many apathetic drones who just go on with their day-to-day existences UNTIL

it matters to THEM.  or THEIR families or people THEY know or love.

I suppose that's one reason I write this blog.  and hope it matters to somebody.

I WILL write my book, too.  because that will mean so much more.

disturbing development

so, I'm supposed to be exercising.

I thought I'd do that yesterday, make a real good effort.

I went through my CD's and put in the Scorpion King Soundtrack and started stretching.  so far so good.

then crunches...no problem.  then, I was really getting into it, and decided to do aerobics.

I figured that, in order to avoid vertigo, I would do whatever exercises I used to do standing, while lying down.

made sense to me.

so I started moving my arms and legs around to try to get my heart rate up.

then, it hit me.

a wave of dizziness like I'm not used to.

this was not regular vertigo.  this was different.  like I felt like oxygen was being cut off from my brain.

yes, I know what that feels like.  and it felt like that.

I lay on the floor, waiting for it to pass, wondering what the hell is going on with my body.

why did these motions bring on this particular reaction?

was it the movements of my arms?  or the bringing up of my heart rate?

I had to know.  so I did it again.


after less than a minute, I had the same reaction, only far worse.

I thought for sure someone would find me dead on the floor.

I lay there unable to move for at least a song and a half.  that would be, what, 5, 6 minutes?

I never completely lost consciousness, I don't think.  almost though.

I thought of calling my partner and telling her to come home.  but I figured, why?  what's anyone going to do about this?  I also thought about calling the neurologist but vetoed that idea as well.  I'm going to physical therapy on Monday.  I figure I'll talk to Stacy about it.  hopefully I can get my point across to her about how this went down and she can tell me what to do next.

I have to admit, this has me a little shaken.  I mean, deep down inside, I honestly don't worry about my health because I figure what will be will be but in the end, I just want to get better however;

this now leads me in another direction.

I always figured whatever is "wrong" with me is basically this vertigo crap along with a bunch of arthritis and, yeah, the fibromyalgia, and, while it is all aggravating and tiring and painful, none of it is life-threatening.

but what the hell is THIS??

pain in the neck and stress

I saw my PT on Monday.

we did strength training along with VOR.  it wasn't easy.  in fact, it was hard.

not all of it.  parts of it.  specifically, the parts where I had to work with weights.  here's what happened:

I was minding my own business, lifting 6 whole pounds up and down over my head repetitively and it was getting harder and harder, but I kept going because I knew I was out of shape and I wanted to just get through the exercises and I didn't want to look like the out-of-shape piece of crap that I am and I felt the wave of dizziness just start to surge over me, but I kept on going and going because I figured if I didn't do something, eventually I was going to end up a big blob and I just wanted to finish and I did.

then I put the dumbells onto the rack and let the dizziness take over.

one of the therapists, Lauren, saw me and asked if I was ok.  I know they have to ask, but I hate when they ask when you are ok when, clearly, you are not ok.  I said not really and sat down fast.  She got Stacy, my therapist.

they got me water and tried to dissect my vertigo attack.  I felt tears come.  I had driven to therapy that day, which was rare, and I didn't want to leave dizzy.  they now thought I was "all worked up about driving" and that was why I got dizzy.  I knew that wasn't the case.  I now was "worked up" about becoming dizzy, but driving there in the first place didn't make me dizzy!!

when I caught my breath, I said to Lauren that the dizziness came after I lifted my hands above my head with the weights, and that this happens at home, too (without weights, obviously).  I also explained that I have neck problems and had gone for an MRI recently (still waiting on results, don't ask!) and sometimes even turning my head will make me dizzy.

she said (surprise, surprise) that neck problems can cause dizziness.  I knew this.  I remember reading this in someone else's blog and then reading more about this online.  here is some information now: cervicogenic dizziness

so after the dizziness passed, for some reason, I felt stupid.  for some reason, I usually feel stupid.  I don't know why.  I have no control over the dizziness.  it is a physical thing.

maybe it is because they (the therapists) talk about anxiety while the dizziness is happening, or right afterward. or they say things like, "open your eyes,"  which, is probably good advice.  it probably makes you less dizzy and makes the attack faster.

and it's not like anxiety is the worst thing in the world to have.  people live with it every day.  it is a common human response to stressful situations.

however

sometimes

it's

not

anxiety

and that aggravates the crap out of me.

it brings me back to a terrible, awful, horrible place in my life that I'd rather never visit again.

well, yeah, now that I've mentioned it, I will say it here, even though I now want to cry just typing it.

I probably will cry before this entry is finished.

a few years ago, I was, well, in a bad way.

in a mental hospital.  people should not be ashamed to say that.  but, society, the way it is, go ahead and judge me.

I was depressed, I was getting help.  anyway...

while I was in the hospital, I was getting these vertigo attacks.  I've been getting them for 11 years on and off, so it stands to reason.

on top of that, I was under tremendous stress (in a mental hospital, away from my family, depressed), AND, I was being pumped full of different medications to try to stabilize my mood.  it's common knowledge that medications can also make someone who is susceptible to being dizzy, dizzier.

well, the thing is, when I would have these attacks, the hospital staff believed I was "acting out."

if anyone has ever seen movies or TV shows about people in mental wards, you know what they do to patients who "act out," right?

I would be yelled at, grabbed, thrown on a bed and pumped with sedatives.  nice, huh?

this continued until I demanded to see a neurologist who whispered to me, "I believe you."  but not before my stay was extended way longer than it should have been.  they thought my "funny walk" was on purpose, too (it was an unsteady gait due to constant vertigo).

so now you know where I'm coming from.

sometimes when people say something is physical, it's physical.

emotional stuff can add to it.  and does, oh boy does it!

I wonder if I am ever going to get to the bottom of everything that is going on with me.

I wonder if there is a bottom.

eating steady

today, I'm trying something "different."

it's really not different, because I've tried it before, but now I'm trying it again with more knowledge.

I'm going super-low-carb in an effort to control my vertigo.  I'm pretty much following Atkins.

this is what I know:

many years ago, while I was engaged to the Evil One, the two of us went on a very low-carb diet, at that time, to lose weight.  We both did...a good amount, too.  But, what was remarkable was that, at the same time, my overall health improved.  smart as I was, I didn't put 2 and 2 together.

see, at the time, I was pretty much bedridden and going to physical therapy to try to learn to walk again after a major vertigo attack.  I couldn't do much else except sleep and drink these high-protein shakes.  after a few months, my balance got better.  I thought it was a miracle.

by the time the Evil One and I got married, I was able to dance at my wedding.  then, like two schmucks, we ate like pigs on our honeymoon.  I remember collapsing in his cousin's yard.  we thought it was from partying a little two hard.  now, looking back, I know it was from my system saying, "hey, what are you doing to me??"  two weeks after we were married, I suffered a worse vertigo attack than the one I'd had that winter.  low-carb to over-carb...my body was in overdrive.  I knew none of that then, though.  I didn't even know it was vertigo, then.  we were still working with the diagnosis of dystonia (and/or "it's all in your head")!

being part of several dizzy/Meniere's/balance disorders support groups has led me to learn that my blood sugar directly affects my balance problems. this is significant information to know.  for so many reasons.  for example:
1. I should not go without eating.  I already know that I am hypoglycemic; I found that out like 20 some-odd years ago.  so, since my blood sugar tends to get on the low side all by itself, it does not need help from me not eating properly.  that's just plain idiotic.
2. stress does have an effect on my balance disorder.  why?  because stress affects your adrenals which, in turn, affects your insulin production which, in turn, affects your blood sugar.  diabetics, take note...stress affects you, too, in a very similar way!
3. other things I put into my body also affect my balance disorder.  one of them is medication.  another is cigarettes.  one I can't do anything about.  the other...well...let me get the diet thing going first and I'll get back to that one.  it's hard to give up smoking when you live with a smoker.  however, being less dizzy is a good incentive, so...
4. if I lose weight, I will be less dizzy.  why? because my body will function more properly; therefore, my organs will work the way they should.  also, my hormones will be at a more stable level.  so, that brings me back to the topic of today.

I absolutely, positively hate thinking about food.  hard to believe, considering my weight, but it's true.  the Nurse Practitioner said it is probably due to the medications I take.  but, get this, because I actually eat very little, my body holds onto the food I do eat like it's in starvation mode because it doesn't know when it's getting its next food, so, even though I don't actually eat enough to justify my round shape, I maintain it because I have done a fabulous job of messing up my metabolism.  that, and the fact that I don't expend enough calories to boot.

so, I also need to exercise more.  I'm working on that one, too.  it's very hard to stay motivated all alone.

taming the migraine

I got in to see the nurse practitioner Monday.

she made an adjustment to my medication.  she also gave me an "emergency" migraine pill, to be taken when the headache is really bad.  it seemed to work pretty well.

I also went for an MRI of my neck.  this is because I discovered somewhere along the line that my neck has been hurting really badly.  the NP wants to check this out because I have had an old injury on my neck (whiplash) which has required physical therapy and she said this could be responsible for the headaches now.  she explained in detail how the nerves in the neck reach the nerves in the head and into the eye, where I have the most of my pain.  she also wants me to get physical therapy for my neck when I go for the other therapy.

we also talked about my progress at balance therapy (or lack thereof).  she was very frank with me.  she told me that, after 11+ years and this many months of therapy, it is what it is.  some people just have to learn to live with being dizzy.  however, the goal of balance therapy, she told me, is to learn to adapt to being dizzy.  be comfortable with it, if you will.  learn to live with being dizzy.

I'm going to be honest.  I'm not comfortable with being dizzy.  I'm not happy with it.  I'm not accepting of it.

I do understand it, for the most part.  I still don't know how I got it in the first place.  Or why I have to be one of the "chosen ones" who get to keep my vertigo where there are lots of "normies" walking around who get vertigo and it goes away.  It's just like everything else in my life.  If something unappealing and less desirable could happen to a person, it's going to happen to me.  I'll get the weird side effects of medications, I'll get the strange symptoms, the wrong diagnoses.  And, apparently, the less-likely ones, too.  Vertigo forever.  It could be the name of punk band.

I've gone twice to bathe dogs with Stacy.  I held up better than I thought I would.  there were times I got dizzy and tired, but I pushed through it.  if I'm going to be dizzy forever, I have to just cowgirl up and do things dizzy.  Now that sounds like a slogan..."Do things DIZZY"  should I put that on t-shirts?

trying to 'break free"

I've been feeling restless lately.

maybe it's the unusually warm winter, or my medication (or lack thereof), which has been making me feel better mentally as well as physically, or maybe it's the balance therapy, or maybe it's a combination of some or all of these things, but I've been feeling like it's time to move on to the next "thing," whatever that may be.

so I've been entertaining the idea of going back to work.

I never have stopped "looking" for work, but I never respond to help wanted ads.  I still don't.  not yet.  but I have started looking more closely, trying to match my skills and location and such.

some days I feel more ready than others.

I was feeling pretty good about this decision this week, in fact.  very much so.  I began talking about it with family and friends.  I got a lot of pep talks and advice.  start slow, work part-time, you can do anything you set your mind to, you've done this before...

I have come back from worse, much worse.  my vertigo attacks have left me unable to walk, barely able to breathe, hardly able to think.

I'm not there.  I'm here.  walking, breathing, thinking.

bring on the job, then, right?

I don't know.

because then something so simple as a trip to Lowe's home improvement store makes me doubt all that.

I went there today with my girlfriend to look at patio furniture.  I was in there maybe 10 minutes when I look up one of the huge shelves for cushions and the dizziness starts.

I try to ignore it and go about my business.  even after my partner points it out.  I tell her that I need to try to deal with busy environments.

we keep shopping, but there is no relief from the lights, the movement, the stimulation of the store.  my head keeps buzzing and I start to feel overheated.  I stumble around some.

I don't want to leave even though I am swaying.  I'm tired of my prison at home.  Eventually, though, it becomes too much and we leave.

Stacy can't resist asking, "part-time job, right?"  really?  as if I weren't disgusted enough.

I'm thoughtful the rest of the day.  thoughtful as in disappointed.  I feel like I'm chained to the house.  whenever I leave it, I get over-stimulated and dizzy.  How will I ever get back to a normal life?

sensitivity

yesterday, I worked a lot on VOR exercises (vestibulo-ocular reflex) in therapy.  they are, basically, the ones to stimulate the vestibular system in order for me to do everyday things.  for example, walking down a hallway while turning my head to simulate, well, walking anywhere while turning my head, but this is exaggerated and done over and over again.  I think I walked down the same hallway yesterday 20 times looking up, down, side-to-side and diagonally.  some of the motions made me more dizzy than others.  usually the up-and-down seems to get me.


I read in someone else's blog about something called cervical vertigo.  basically, this is vertigo caused by a compression of the nerves in your neck.  it got me wondering if this is, possibly, the cause of my vertigo.  I have been in physical therapy several times before for arthritis and this can be one of the causes.  also, I seem to have vertigo more when I move my head in certain positions than in others.  I don't know.  something to keep in my back pocket...


anyway, I did other VOR exercises, too, including my torturous B, and others, like standing on a rocking board and on a cushion.  I do all of these pretty well, now.  it's afterward that I may or may not have a problem.  still.  but this is progress, they tell me.  I'm doing better than when I started.  my little voice still wonders if I am just "over" my spell of vertigo for now and will it come back, or is this true progress?  it's scary.  because then things happen like the following:


I go on the treadmill, as I have been doing for weeks.  I'm with a different therapist (the one I was "short" with a while back, but it was all good), so she has her own way of working with me.  she has me gradually work up to the speed she wants me to walk at.  1.3, no problem.  1.5, trotting along.  1.7 this is cake.  then she hits 1.9.  this is still slower than the speed I usually walk at but for some reason, the machine starts making a weird grinding noise that my body cannot handle.  immediately, I go into "overload mode."  my eyes close of the own free will, my face grimaces (it's ugly, too), my muscles start contorting.  I start holding my breath involuntarily.  I am still walking the treadmill, but I start wondering if I am going to pass out right there.  my normal therapist sees this and asks if I am all right.  I find I can't exactly form words to answer her, just parts of words, but I am able to convey to her that I am not exactly "all right."  she reminds me to breathe and focus and comes over to lower the speed on the treadmill.  as soon as she does, the noise goes away and my body immediately relaxes.  an assistant is with her.  Stacy (my therapist) asks again if I am all right and I tell her that the machine was making a weird noise.  before I can say anything, the assistant asks me, "oh, you were afraid of it?" in a kind of nurturing, yet condescending voice.  What?


Stacy had  to go back to work with her patient a moment, and the assistant had gone with her.  I was alone on the treadmill, inwardly shaking my head (had I actually shook my head, I'd have been quite dizzy).  did she actually say that?  it was just a bizarre question...

when Stacy came back to check on me, I had to tell her, "I'm better now.  the sound apparently set me off or something.  she," making crazy eyes at the assistant, "thought I was afraid of the noise."  


while Stacy and Lauren (the therapist I am working with) talked about how the machine probably needs to be serviced, and that's where the noise came from, I didn't get the validation I had hoped for, like, "wow, what a crazy-assed, stupid, ignorant, uninformed, jerky, dumbass response to someone who has neurological responses to vertigo! I'm sorry you had to deal with that.  I'll let her know."  or something to that effect.


maybe I'm a little sensitive.  


maybe it's just that from working with and for people my whole life, I am hyper-aware of what comes out of my mouth at all times when dealing with people at all times.  I remember that they all have a story, a life, feelings, a family.  I don't know why, at this stage of my life, I am still shocked and amazed when other people don't.


and this was nothing.  seriously, nothing.  I know it was nothing.  she was just an idiot.  ok, not an idiot, she just was clueless.  


but, it's the tip of something much, much bigger that I have been holding onto and I am damned near ready to burst.


another post...perhaps another blog...

vertigo happens

Yesterday's therapy was definitely interesting.  They called in the troops.  (Have I mentioned that I love this place?  I will, about a million times.)

At first they were puzzled at my relapse.  I was doing so well.  Yeah, I've heard that before.  But I knew not to panic this time.  These people taught me that.

These particular therapists were not my "regulars," so I explained how long I'd been at this, and what could possibly be at work here, my new medication, the weather, or just because.  Just because this is the third January in a row this has happened to me.  For no other apparent reason than it being January.  Only this time I've been doing everything to prevent it and it still decided to happen.  So, I guess my vestibular system really, really hates January for some unknown reason.  

The aide knew he couldn't do anything with me, so he called in the assistant who was supposed to be working with me (often at physical therapy establishments, therapists or assistants who work with patients will have aides go through exercises or therapies with patients who are doing well, especially when said therapists or assistants are finishing up with their last patient.  It's common practice.  I have seen this in every establishment I have been to -- sometimes they even employ the services of interns for this purpose).

The assistant came in and evaluated my situation.  He saw I was in a bad way, so he said he'd do a Hallipike maneuver to see if he observed any nystagmus.  He had me sit down with my legs in front of me then dropped me down quick with my head to the left.  As I felt the familiar dizziness come over me, he told me that he did, indeed, see my eyes pulse, or move, or whatever nystagmus looks like.  He had me collect myself and then repeated on the right.  I felt fine and said, "no, this side's ok." Just as the words came out of my lips, the world spun out of control and my eyes started fluttering.  Rolling around in my head like something out of a horror movie is more like it.  I heard his voice from a foggy distance, "what's happening?" and I knew I had to answer or he'd think I was seizuring.  "That's just my body's neurological response," I tried to explain.  I felt like hell.  He had me ride out the dizzy wave and then had me sit up.

He called in someone else, whom I assume was a therapist, and we then worked on eye exercises and head turns, all seated.  This was a far cry from what I had been doing this past few months, but vertigo happens.

My "homework" is simple, back-to-basic seated exercises.  And, yet, they still make me dizzy.  It is what it is.

I had one moment today of "what if?" (what if I never get better?  what if the exercises never work?  what if my condition never improves?  what if I can never go to work?).  My partner said we'll get by.  I love her for that.  I hate that I have to ask.  But, apparently, vertigo is going to keep on happening and happening and happening and...

holding on

I woke up today and, right off the bat, I realized that getting to the bathroom was not going to be as easy as it usually was.

When I stepped onto the floor, I felt everything tilt and I stumbled until I hit the wall.

It was as if I had been at sea for months and I hadn't gotten my sea legs and recovering from a hangover without the fun of the drink the night before.

here I go again...


I knew this day was coming.  I just didn't know when.  And now I kinda felt like Chicken Little with pieces of sky in my face.  This is not an "I told you so" you want to have right.

But with a vestibular disorder, you're always Chicken Little and the sky is always falling.  No one wants to think so, but you can go from perfect to horrible in the blink of an eye.

Let me start from the beginning.  I'll try not to be too boring.

11 years ago this past Christmas Eve, I joined the ranks of the dizzy.  It was much worse than it is now.  Much, much worse.  At first, I thought I was having seizures, but I was awake.  My eyes rolled up in my head and my body would shudder violently.  (My moronic fiancee...now my ex-husband...didn't get me immediate medical care because he feared the hospital testing me for drugs!  We smoked a little pot.  For Christ's sake, I would have taken HIM if we had just shot up heroin and done twenty lines of coke, but, like I said, he's a moron).

When the attacks continued, we finally did go to an emergency room, where they told us to follow up with a neurologist.  On our way there, I fell in the parking lot, which happened to be adjacent to another hospital.  The neurologist's office said to bring me to the hospital instead, where they told me it was "stress" and sent me home with Xanax and Zoloft.  THAT made things 1000 times worse.  Within a day, we were calling an ambulance from my house, but since the EMT's didn't know what to make of me, they were asking me in the ambulance if I were being beaten.

I took many tests and spoke to many people at the hospital.  Finally, an Ear, Nose and Throat doctor told me he knew what was wrong with me...Labrynthitis, a severe infection of the inner ear that causes vertigo like mine.  He said the vertigo could take a few weeks to go away and he prescribed steroids and further testing at his office.

That should be the end of the story.  But it isn't.

His testing revealed "central nervous system damage" (whatever that meant).  He told me to follow up with a neurologist.

And so my nightmare with doctors began.

I saw doctor after doctor, had test after test.  No one could put a finger on what was wrong with me.  Some told me it was "in my head."  Some misdiagnosed me.

I lost the support of most of my family and friends because of my depression and the actions it led me to do. And because they didn't really think I was "sick."

I had to keep researching myself, finding answers, support, weeding out bad doctors, unhealthy relationships.  It has not been easy.

Two years ago, I decided to go back to the beginning.  An ENT and have him retest me.  Same results.  My inner ear is messed up.  From there, I tried some physical therapy.  That therapist sent me to a neurologist, who sent me for some testing.  That testing is what led me to my current treatment with a practice who finally understands how all this works...the vestibular system.  Every question I ask, they can answer.  They understand WHY my body does what it does.  HOW my lazy eye affects my improvement.  HOW neurology plays a part in the vestibular system.  EVERYTHING.  Even how psychology plays a role.  Amazing.

So, back to today.  I knew it would come.  How many times have I had relapses?  Too many.  I haven't had    one since I've started balance therapy at this place, though, but I'm glad I have them.  And I'm glad I have an appointment tomorrow.  I know they will help me through this one.