Meniere’s disease is a disorder of the inner ear that can lead to dizzy spells (vertigo) and hearing loss. In most cases, Meniere’s disease affects only one ear. Meniere’s disease can occur at any age, but it usually starts between young and middle-aged adulthood. https://g.co/kgs/8CVygr
I noticed it as I headed for bed this morning. Turning over in bed caused the world to spin, requiring me to focus in order to calm the spin. It wasn’t bad, but it was persistent.
It was also present when I woke up. As I moved about today, the spinning has gotten more persistent, tending towards nausea. So it is time for the Xanax again. The knee and the back are still painful from my bathtub flight last year, so I’m going to sit here and play World of Warcraft in my pained and vertiginous state. Because I’m going to do something today other than drool on myself. I’m hoping I’m not coming down with whatever sickness the Son brought home from college with him.
On Tuesday I started feeling the effects of an oncoming attack, but I was determined to raid with my group in World of Warcraft as scheduled. We managed to do our average best, although we didn’t clear the entire heroic level of Azshara’s palace the first night. On Wednesday I felt worse. The start of a two-day migraine set in, a knot of pain right in the center of my skull. I did manage to show up and raid again that day, but I wasn’t my best and it showed. Thursday the pain was so bad that I sat in the library with no lights on for the entire day, wishing the pain would go away. Even the monitor for the laptop set to the lowest light setting was bright enough to cause stabbing pain, so I just sat there listening to podcasts wishing I could do something else.
On Friday night the vertigo started. It was pretty mild, compared to vertigo attacks of the past. No projectile vomiting. No lying on the bathroom floor. The room would start spinning, and then I would re-orient myself by staring at a point on the wall for ten minutes or so. When I went to bed the vertigo was so bad and persistent that I couldn’t sleep, and I couldn’t focus on a point in the dark. So I took a valium and finally fell asleep. On Saturday the vertigo could not be dispelled any longer. No amount of re-orientation would make it stop, and I was beginning to get nauseous. Time for the Xanax, which I stayed on for the entire day and through most of Sunday morning.
I woke up about an hour ago. I feel dizzy now. Dizzy, not vertiginous. The lights are still too bright but they don’t hurt like they did Wednesday. I’ve got to go visit my ENT on Tuesday to get a refill on my Betahistine anyway, so at least I’ll have some symptomatic stuff to talk with her about while I’m there. I’m going to try the vestibular exercises that my physical therapist gave me as soon as I publish this. I tried them on Friday when the vertigo started and they just made things worse. Fingers crossed.
I missed raiding again tonight. Thunderstorms started rolling through Austin at about 5:30 pm and persisted until about 7:00 pm. After the first flicker of the house power during a storm we tend to turn all the electronics off. We turn them off and wait until the storm has passed. This is how we’ve approached dealing with power surges in Austin Energy’s lines ever since we lost electronics a number of years ago to a lightning strike that hit a transformer in the neighborhood.
But it wasn’t just the fact that I would have had to reboot the computer and do updates in a few short minutes that kept me from raiding tonight. I’ve been uncoordinated all day. Dropping things, knocking things off the counter that I knew were there and thought I would miss. Just a general sense of dizziness and disorientation that had me wondering if I would make it to raid tonight or not. When the thunder started rolling and the lights started flickering, I not only knew I would probably miss raiding tonight, but I knew that the reason I was feeling so unstable was the atmospheric pressure had changed with the storm front moving through, and that was probably why I was feeling so dizzy. This happens pretty reliably. I’ve tried tracking the barometric pressure in the past, but it doesn’t seem to be highs or lows that are the trigger, but the simple fact that the pressure changes rapidly.
When I went to do the new vestibular exercises that my physical therapist has me trying out, I could not do one of them properly, and this is the first time I’ve had this problem since starting the exercises. I can’t find any Youtube videos that replicate the exercise that was was given to me, the specific exercise that I’m having trouble with today. However, this video illustrates the basic mechanics.
I use my thumbs, and I close my eyes after centering on the target. Then I’m supposed to move my eyes to where I think the other thumb is and then open them again. If I’ve missed the second target I’m supposed to focus on the correct position, recenter, and then close my eyes again before moving my eyes back to where the first target was, repeating as many times as I think necessary.
I could not find the second target today. Dozens of repetitions and the target is never where I think it should be. Never happened before. I started doing this exercise a few weeks ago, and when my physical therapist showed me this exercise I was thinking I don’t need to do this, I know where my thumbs are. Using peripheral vision, I’ve managed to track back and forth between the two targets without a hitch every time I’ve tried the exercise. Then today, I open my eyes and I’m not looking where I thought I was.
I have the explanation for why I’ve been such a clutz all day now. It just doesn’t make me feel better knowing what the problem is. I’m going to have to do a better job of doing the exercises as often as needed and not just when I think I’m having a problem. At least the dizziness didn’t progress into a full-blown vertigo attack today.
I haven’t been tracking my vertigo spells on the blog. I don’t know why. I think I didn’t want to make everyone reading this suffer through repetitive bouts of vertigo with me by my documenting the episodes on the blog directly, each time that I went through one.
I wasn’t really able to type or even make noises beyond gagging on vomit between requests for someone to kill me in the years of suffering that I endured before being prescribed Xanax and Promethazine, which work quite well to subdue the worst parts of rotational vertigo.
…and after the attacks were over, sometimes two days later, I would be unable to do much more than sit up in bed and eat soup for at least a day. So I would have had to remember to go document the event while still recovering from the trauma of the event. Anyone who has had an intense illness can testify just how much they don’t want to go back and revisit just how hellish the event was later. “…and then I blew chunks all over the bathroom floor. Luckily I didn’t fall back into it when I passed out.” All the pain of a drunken bender without the entertainment of being stupid drunk first. Leave it in the past.
Now that I have a medication regimen down, I just have to deal with the fuzzy-headedness the drugs inflict on me. I’m stuck for hours, essentially staring at a fixed point in space so as to anchor the eyes on something. Oops they’re drifting left again. Find the Catbus plushy. No more drift? Okay, back to writing. Lather. Rinse. Repeat. For as long as is necessary. For as long as it takes to get tired and fall asleep.
This year has been really bad. The worst since I stopped working and could eliminate stress by not having to perform on a set schedule every week. The increase in symptoms started February a year ago and has slowly gotten worse. I’m pretty sure it’s the second ear failing on me, having gone bilateral then. If that’s the true cause of my current suffering, then I should level back out after a few miserable years, and hit a different long-lasting trough of capabilities. I’ll just have to take stock again then, see what I can still do.
In the meantime I’m going to start trying to document each time I get full vertigo. Since I can do it while sitting here trying not to spin, access to the laptop being a qualifier, I’m going to do my best to write something while the vertigo is kicking my ass. I’m going to do this because this blog is for me as well as for you, dear reader. It might be handy to be able to go back and check how bad the bad really was.
This time the vertigo popped right in the middle of the heroic Azshara raid boss fight my current raiding group has been working on for the better part of two weeks. It looked like we might have a good chance of getting her down this week, but I kept getting dizzier and dizzier and missing prompts to go here and there as the mechanics of the fight require.
Just too much screen movement for a day that the eyes want to pretend that the world is spinning around my head. I had to bow out and leave them to their work. Hopefully they did better not burdened by my inability to deal with so much motion on the screen. It’s taken two hours to get the spinning down to the point where I can sit in my adjustable bed and type this simple entry up.
I don’t know how many actual spells I’ve had this year, which is why I’m going to start trying to do this each time I have one. I know it’s the first one in October because it’s still the first week of October, or was until yesterday. But I had at least two in September, ditto in August and it was even worse in July. June wasn’t too bad but that was when the light dizziness really seemed to kick in, May leading into June, and I can’t figure out what is causing this constant near-nausea inducing dislocation and disorientation on a daily basis. It is maddening.
I’m getting blood tests done for allergies this time, betahistine will interfere with the skin tests and I’m not willing to stay off it for a week. I’ve also started some training in vestibular therapy while I’m in physical therapy for lower back pain. I’ll write more on that subject when I know more about it. I just want the dizzy to GO AWAY. But it won’t. So I’ll medicate it away when I have to.
October 9th – Still recovering from the vertigo last night. I’m going to miss two raids this week. Can’t be helped. I’m almost in a vegetative state today.
A hat/tip is due to the blog Meniere’s and Me for bringing this finding to my attention. The Wife has called me her human barometer since I was first diagnosed with Meniere’s. I try to laugh with her when she says it.
I had the weirdest dream last night. When I’m having dizzy spells like I’ve been having all summer, I tend to have really strange dreams, and this one was a doozy.
I was in my maternal grandmother’s house. It was exactly how I remembered it. The lime green living room walls. The floral patterned couches that I used to lay on and trace the patterns with my fingers. When I looked up I noticed that grandmother was crying. I asked her what was wrong? Why was she so upset.
“I’m sorry Tony. We left you a world that was so broken and we never knew how badly we had broken it.”
I tried to comfort her. I got her to sit down and I hugged her. But I was only a small boy and so my arms wouldn’t go around her. I couldn’t reach her shoulder to rub it consolingly. I’m thinking to myself “why is she so huge? I’m not a child anymore.” and then I woke up. weird dream.
I’d like to think I won’t owe my children an apology for the world we leave them. Hope springs eternal.
The thing I’m most allergic to is household dust. Household dust? How are you supposed to survive when the thing your body generates every time you move is something that could potentially cause a severe allergic reaction?
Yesterday I was looking for something in the pantry. When I went to move stuff around in there, I noticed the floor probably hadn’t been swept under the shelving units for at least ten years or so. So I did what any normal person would do, I pulled the shelves out and started cleaning.
Then I noticed the dust billowing up off the floor. Crap! So I retreated and got my allergy medication taken, then got back to work finishing the task. When I went upstairs later to do the cardiac exercises that I’m supposed to do 3 to 5 times a week, I realized that I was rapidly starting to feel worse, even having taken a full course of allergy meds. Headache, dizziness, periods of light vertigo.
So it was time to break out the Xanax and then rinse my sinuses and wash the outside of my body to get all the remaining dust off. Then I had a bowl of chicken soup and went to bed early. Sixteen hours later I wake up. Still dizzy, still light vertigo, still pissed about all of the above.
Someone has to clean the house, and if that cleaning stirs up dust, that person cannot be me unless I’m wearing top of the line filtration gear. This needing to do things that I really shouldn’t be doing is going to drive me stark raving mad here soon. I wish I could afford to hire a maid. At least I’m getting better at writing while suffering from brain fog. Progress? Maybe.
Editors note: July 30, 2019. First day without near-active vertigo , constant dizziness, since writing this post. I went to the ENT yesterday. She couldn’t help me, but at least I know it isn’t an infection, or benign paroxysmal positional vertigo (treatment for which is mentioned here) it must be allergies or this is the way the destruction of my inner ear mechanisms occurs while I’m taking Betahistine.
…and today I feel great. For the first time in at least two weeks. Time to go make myself sweat doing the cardio I couldn’t do while nearly puking or stumbling off the treadmill. Fun!
Then four days later (approx.) the same dizziness returns. I have no idea what is causing this, and I hate just saying “Meniere’s” and forgetting it. That is how mild symptoms turn into buses that run over you.
I ran across this article on one of the support groups I’m part of. I have a canned response that I give to medical professionals on this subject. When I go in for the frequent checkups that my chronic illness requires, there is always a mental health assessment form among the many other pages of questions to be answered. Mental health assessment forms that doctor’s offices hand out in a vain attempt to stem the numbers of suicides that occur among their patients. While I’m handing the paperwork in, I hold that page back and get their attention. Then I say,
“I can answer yes to all of these transparently worded suicide prevention questions that you ask, and yet I’m not inclined to take my own life right now.”
One of my doctors has heard the disclaimer so often that he heads me off with the comment “Yes, I know this doesn’t apply to you.” Regulations, you know. I can answer yes to all those prying questions about self-destructive behavior because experiencing chronic illness destroys the well-being of the person afflicted. It can and does destroy your feelings of self-worth to the point where suicide is something that you can contemplate dispassionately on virtually any clear-headed day.
“At least these fucking ears would stop ringing.”
But knowing this fact, that you are depressed due to health problems beyond your ability to control, and that you really don’t want to die right now, it’s just an option to contemplate in the unknown and unknowable future; this depth of self-knowledge removes the probability of taking your own life at the moment the questions are asked. The probability is removed because,
“Yeah this sucks but it ain’t the worst I’ve seen.”
It’s those moments when it is the worst that remain problematic. I know my worst moments. I’ve talked about them enough in the past. It’s those moments that I don’t think about how easy it would be to end it all. I try to think about something, anything else. In those moments I cling to those around me for dear life, because I know that they are the only things keeping me there in those moments.
May all of my fellow Menierians and all my brothers and sisters who suffer from chronic, invisible illnesses find comfort in those times of need. May all of us avoid his fate, if we can. Contact the lifeline if today is your worst day and you have nowhere else to turn. Don’t snuff the candle out and think the world is better without you. It isn’t.
If I could be you, if you could be me for just one hour. If we could find a way to get inside each other’s mind. If you could see you through my eyes instead of your ego. I believe you’d be surprised to see that you’ve been blind.