No answers, continued

I saw the neurologist yesterday. The MRI of my cervical spine was also negative. That pretty much rules out MS now.

The doctor still sees weakness in my legs and I am not walking correctly. I still don’t have consistent balance. When I stand for too long, I feel like I’m going to pass out. That’s where we are now.

Next step is an MRI of my lower back and EMG with nerve conduction studies to my legs. I still have to get the bloodwork done, too. I didn’t make vestibular therapy for this week because, frankly, I couldn’t afford all the co-pays. I’ll go back next week as it really does help.

If we can’t find anything, the neurologist is going on the theory that this is a mega virus that has really suppressed my vestibular system and it just has to work itself out.

Trying to stay positive!

So far, no answers

I went for the brain MRI and it came back normal. Good news but no answers. I still have one to get on my cervical spine.

I saw the rheumatologist today and he feels this is not autoimmune. If anything, he feels the spine is worth looking into further. Ok. But still no answers. He is recommending the rest of my back be studied with MRI as well.

My blood work showed impaired kidney function. I have to get that retested. I’m also getting worked up for Lyme and the rheumatologist is also testing me for some muscle disease.

Meanwhile, I have found the vestibular/physical therapy has been helping me reset my balance. It’s getting closer to normal.

I am bored and I want to go back to work, but I can’t see myself working in this current physical state in my particular job. I haven’t even tried driving yet.

That’s about all the progress I haven’t made.

What’s been happening

It’s been a couple weeks.

My dizziness has generally gotten better. I will have problems if I move my head too quickly, but, overall, the dizziness is much better. I think vestibular therapy and time have helped.

I still have shakiness and weakness in my legs. No idea why. I’m also really easily fatigued.

I also went to the ER last week with an attack of colitis. My gastroenterologist said not to worry about it because he had just given me a colonoscopy that showed no disease. However, this has made the fourth time in three years or so that this has happened to me. I don’t know if it’s related to anything, but, since it’s happening now, I thought I’d record it.

I just saw a neurologist yesterday who actually took a long and detailed history of my symptoms and gave me a thorough exam. She is ordering some MRI’s. She did not think this was related to stress (neither did my psychiatrist, btw).

Oh, and the itching finally went away.

I made an appointment with a rheumatologist just in case no one else can figure this out. I do not plan on being sick forever. Or, if I am, I at least want to know what I have.

Vestibular Therapy Today

Had my bi-weekly torture session otherwise known as vestibular therapy.

I guess “torture” is a strong word. But it is very difficult and makes me super dizzy and leaves me exhausted.

They stepped things up, too, having me do exercises on a balance board. It’s just what it sounds like. A wobbly board you are supposed to balance on.

They also did other head positioning moves which create endless dizziness and nystagmus.

I talked to both therapists who have worked with me about my neurologist visit. They were both surprised and angry. They acknowledged these symptoms were not consistent with something psychosomatic.

For example, I had to use the exercise bike. As I was pedaling, my right foot kind of arched and pointed. I could not get it to stop and pedal normally.

I’m trying to not obsess about all this but it’s hard when you don’t have answers.

Thank you, next

Neurologist today.

Did not go well. We went over my symptoms and he feels they are not neurological.

He went on to suggest they are from stress.

Sigh.

I’ve been down this road before. Neurologists telling that my condition does not present as “typical.”

That doesn’t make it psychological.

He said people also don’t suffer from chronic vertigo. Which is false. Being a member of several vestibular/balance/dizziness communities, I can confirm that thousands of people suffer from chronic vertigo.

So, he already had my distrust.

But, EVEN IF the walking issues were somehow due to some kind of psychological compensation, which does happen after someone gets vertigo (which I also told him and he DENIED!!!! This is, indeed, a fact, proven to me when I have had severe vertigo in the past and explained to me by doctors and vestibular therapists)  I did not psychogenically develop cellulitis and swollen lymph nodes.

He referred me to a movement specialist. A partner of his. I don’t know how I feel about going. I don’t think this is a movement disorder. And, if it isn’t a neurological one, then I’m back to it’s because of these infections I keep getting.

K

Doctor Today

I went to my primary doctor to follow up from the ER visit on the weekend. He noted the weakness when I walk more than a few steps and when I try to lift my legs.

The swelling and itching has mostly subsided in my scalp and neck. I still have a few small swollen nodes.

But.

It then migrated to my ears again. Now only one ear, but it has made my two very old piercing holes inflamed, hot, and itchy.  Oh and two fingers on my right hand are ruthlessly itchy and feel like needles are scraping underneath the skin.

The doctor is puzzled at this point. He is sending me for blood work to look for things like autoimmune indicators and thyroid and adrenal insufficiency. I don’t know...I just know my body is like hey I’m going haywire and you really need to figure out why.

Tomorrow, I go to the neurologist. Let’s see if he has any wisdom.

So at the ER

I went to the ER. It did not go as I had hoped.

The doctor acknowledged the swelling in my neck and my swollen lymph nodes and decided I have an infection.

According to him, it’s a “coincidental” illness. It has nothing to do with everything that has been happening with me.

I tried to explain that ALL OF THIS STARTED WHEN MY EARS WERE INFLAMED AND ITCHY a couple of weeks ago, and the assistant who was in the room with him said, “oh now it was your ears, too?” Which the doctor was actually able to also acknowledge swelling and redness on.

I was so frustrated. But they said to me clearly, “don’t expect to get answers here tonight.”

At a hospital. Silly me.

So they sent me home with antibiotics and told me to take Benedryl (which I have already been doing with little relief).

I am not up for this level of uncertainty again.

Still itchy

ok this itching is bizarre! And it’s driving me crazy!

I also still have lumps on my head and down by my neck and parts of my ear.

Considering going back to the ER. It’s just such a weird reason to go.

Weird symptom

Yesterday, I woke up and my head felt like it was being stung by a million fire ants.

Itching like mad. Like it was infested with bugs (it’s not. I checked).

It was absolute torture. And I also had lumps all under the skin on my scalp.

The internet was no help. I didn’t call the doctor because what am I going to say? My head itches?

I tried showering. I use a gentle shampoo bar from Lush which I have been using for months so I figured that would be safe.

I tried changing my sheets. Just in case. I do have pets. My daughter has been sleeping in my bed while hers is broken, though, and she has no itching problem, so it’s most likely not environmental. Still, I have to cover all of the regular bases.

Itching continued all day. All night. My brother-in-law told me to try Benedryl. I hadn’t up until this point because I figured I couldn’t be allergic to anything...there was nothing TO be allergic to. He said it still could help the itching because of something something histamines.

I took Benedryl. Some relief. Some more Benedryl. Went to bed. This morning, the lumps are smaller and there is still itching but maybe not as violent. However, parts of my ears are getting itchy and swollen again. What the actual hell?

As far as the dizziness goes, that waxes and wanes. At times, I can almost walk a straight line. At other times, every step is a chore.

Hey, maybe when this is all resolved, I’ll get a disease named after me? This is really some crazy stuff.

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.

And the world still rocks

I had vestibular therapy today. I’d like to say it was an enjoyable experience but that would be a lie. It was, well, it was torture if I’m going to be honest, and I have made it a point to be honest on this blog.

I had to do all kinds of standing on one leg things. I felt simultaneously like the floor was rushing up at me and that I was rocking on a boat in a storm. Over and over again. As you can imagine, it was not easy and I was relieved when it was finally over.

Until she did that making me lay down really fast while turning my head thing. My eyes fluttered for about two minutes (she told me) when we went to the right and about a minute when we went to the left. After that, I was pretty much done FOR THE REST OF THE DAY!

I’ve been home for hours and my vestibular system is still super irritated. I can barely move my head without waves of horrendous dizziness rushing over me. Walking is horrible. Still, I know I’ve had it much worse and that’s what drives me to know it will get better. I’m just getting a little impatient.

Vestibular Therapy

I went to my first session of vestibular therapy yesterday. Let’s just say it wasn’t what I had hoped.

The therapist moved my head around and watched my eyes move around and kept commenting on how extreme my reaction was and how severe my balance issues were. She also had me do a couple of things like stand on one foot (ha ha) and turn around really fast (and I hit the floor).

All I kept thinking was I’m glad I am going now when it’s not as bad as other times. What would she have said the first time I had it?

In any case, she made me get a walker, which I thought was a good idea. I was able to borrow one from a neighborhood lending closet. I also picked up a shower stool because showering is scary, I won’t lie.

I’m afraid people won’t understand how I’m suddenly so sick. To be honest, I don’t understand it. I’d really love to know what exactly brings on these episodes.

That’s it for now.

What comes around..

It’s back.

After 6? 7 years, my good buddy dizziness has decided to come for a visit.

I guess I can’t complain. I’ve had a good run.

I’ve been driving (except at night, but that’s because I have poor night vision).

I’ve been working. Full time. More than full time because I took additional jobs on top of my full time job.

I wasn’t completely clear-headed in all of that time, but I had learned to function just fine. No sudden head movements. No roller coasters and the like (I tested that once and regretted it for days).

Then, I had some random itching on the outside of my ears. They got hot and swollen. After a few days of that, the dizziness hit and it’s been hanging around ever since. I was in the hospital a few days with it. The neurologist I saw there said the swelling probably went into my inner ear and messed things up. He said such swelling could be on the microscopic level and be enough to throw off my balance. Awesome.

I’ve been off from work a week and it’s boring. I’m set to start vestibular therapy tomorrow.

One big difference between this time and the others: I’m not afraid and I’m not searching for answers. I know what it is and I know it can go away. It has before. It’s also been so much worse. So, I have nothing to be afraid of. It’s just not a super-fun way to spend time off.

Will update after vestibular therapy.

Seeing 2-D In a 3-D World

I have a convergence disorder. When I focus on anything, either of my eyes will cross. For most people, when they focus, their eyes, naturally, look straight ahead together. The resulting image for me, apparently, is somewhat more flat than for typically sighted people.

Even though my brain has long-since learned to compensate for this, it still manages to impact on my functioning daily.

Take driving, for instance. Since I have a very hard time judging the distance between myself and other cars, I usually drive much further from the person in front of me than I probably have to. That may annoy some people, but at least it's safe. Parking, though, is another story. A spot has to be huge in order for me to try it. "Fortunately" for me, I have a handicapped parking placard, so I can usually find larger spots when I'm out.  Usually, but not always. Just today, in fact, I left a parking garage because the spots all seemed micro-sized to me. It was embarrassing, really, to have the parking attendant watch me attempt not one, but two spots before driving away in defeat. "Drive home safe," he told me. I drive fine. I just can't park! Oh, and never, ever ask me to parallel park. I have no idea how I did it for my driving test. Thank God I never have to do it again.

It's not just driving, though. I even have trouble simply walking. I never see little dips in the ground or bumps on the sidewalk. Especially if the color doesn't change. If I had a dollar for every weird step I made into a hole, over a seam in the cement or down a dip at the edge of the sidewalk, I'd have a tidy sum by now. Good thing I have strong bones. 

Walking in the dark is an even bigger adventure. The shadows and bits of light trick my eyes into thinking that bumps exist which don't and ones that do exist are even harder to spot. I usually hold on to things, walls, people, to avoid falling on my face. 

There have been less important ways I've had my lack of singular binocular vision affect me over the years. I can't catch, throw or hit a ball. Threading a needle can be torture. I also can't see a 3-D movie. Shrug. 

I have tried vision therapy at various times. It's really uncomfortable and there's a very slim chance that it will work for someone my age. I had that one doctor fairly recently suggest surgery to correct my eyes, saying it may even help my chronic dizziness. However, he also said it could make things worse as my brain has been used to seeing this way for so long, not to mention the fact that my eyes could just go back the way they were. Nah. I'll just hold on to things and park in big spaces. It's worked out all right so far. And I honestly don't mind missing out on 3-D movies. Or playing ball.

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.