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
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.
Then there was the effect of Christian Science on my family. I’ve struggled with where and when to mention this little gem of understanding, because mentioning it is fraught with tons of angst and potential explosive feedback. But understanding how I got to 40 without a diagnosis of Meniere’s, how I’ve never been diagnosed with dysgraphia even though I have had all the symptoms of it for the entirety of my life is a direct result of my mother’s early childhood indoctrination into Christian Science. Because of this fact, Christian Science has to be discussed here as part of this story.
Christian Scientists aren’t scientists; they pray to Jesus to cure what ails them. Jesus is their science, and they exercise their science in prayer rooms across the US. They still do this all across America to this day. When a child dies from lack of medical care, and the state where that child dies cannot prosecute the child’s parents, the law that allows this was lobbied for by the followers of Mary Baker Eddy, the founder of Christian Science. My mom and her immediate family were members of this belief.
Her distrust of doctors and medicine lead directly to her demise February 9, 2018. One of the mantras she took to her grave was doctors don’t know anything. It was her most repeated comment over the last months of her life, as doctor after doctor told her she had cancer and needed chemotherapy. You couldn’t dissuade her of this or pretty much anything else she believed at any point in her life.
This is a hallmark of most of humanity, I have come to find out. If you think you can change the average person’s mind you simply don’t know what you are thinking. People survive as long as they do by believing things, and sticking to those beliefs. My mother survived to the age of 77 and raised four children to adulthood based on her doing exactly what she deemed best at the time, and you won’t convince someone who has lived successfully by their own judgement for 70 years and more that what they believe is wrong. So give that idea up now and save yourself the life-shortening frustration.
Christian Science. If you are a Christian Scientist you don’t take drugs. You don’t see doctors, and if that religious upbringing was all there was to my mother’s belief, I think she would probably have gotten over it eventually. However, over the course of her life she has been nearly killed by well-meaning doctors more than once. All her life she’d been told gibberish by people who didn’t have the sense to pour piss out of a boot with directions written on the bottom (not that she would ever utter such a low phrase. In her estimation) so she knew that people believed insane things and discounted what other people told her almost by rote. She knew what she knew, but that left her vulnerable to the things she thought she knows but was wrong about.
Mom knew the value of modern medicine and never hesitated to get me antibiotics to treat the frequent illnesses that I had as a child, but she never stopped believing that doctors were pulling a scam on the sick. It all had to be a scam, somehow. She was never clear on how or why, but it was a scam, she was sure of it.
She never stopped believing that people would get better on their own if they just lived a better life, ate better food, got the right kind of nutrition. It was the failure of this belief, that healthy living was all you needed to keep from getting cancer that killed her a decade early. Had she not had encounters with believing doctors who proposed treatments that proved near-fatal, treatments that were fatal to her mother. Treatments that decreased the quality of life for the patients she tended. Patients that died anyway. Had she not watched time and again as things were labeled bad be relabeled good with more study and more time. Had she had different experiences with the medical community, she might have said yes to the promising new treatment the doctors wanted to try. The same treatment that saved president Carter’s life. But she didn’t have those experiences, and so she didn’t get to live that extra decade.
I woke up dizzy Monday. Dizzy, not vertiginous. With vertigo, the world spins. Or rather, with rotational vertigo, the world spins, generally in a horizontal direction (don’t ask me which way, because my brain will lock up) I took a bunch of drugs trying to make it better. Nothing made it better. Dizziness is (as I’ve said elsewhere) the most common complaint that doctors hear. It means completely different things to different people. This dizziness is a feeling of being on the verge of falling/fainting, pretty much with every step.
Tuesday I woke up, dizzy again. This time dizzy and with chest congestion. I had taken the CPAP mask off to answer the phone, and simply neglected to put it back on at about 8 am (trying to schedule appointments with mundanes means being clear and attempting to be coherent at 8 am when they return calls) so when I finally got out of bed at noon, I had a nice wheeze going and a tickle in the middle of my chest. Needless to say, I took a round of allergy drugs and my regular daily medications, put the mask back on and went back to sleep.
When I woke back up again, the tickle was gone, the dizziness was lessened and I wondered about the cause of the dizziness since the mask filters all my breathing air. I tried wearing a particulate mask around the house for awhile and that seemed to help, but then I had to talk on Discord for the guild raid that night, and the tickle and congestion returned.
Funny thing is, I can stick my finger in my left ear and trigger the inside out vision for a brief second or two. It makes the dizziness much worse, to the point of almost blacking out. The right ear, even though I have bilateral (both ears) Meniere’s, does nothing to my equilibrium. That is a puzzle.
Allergies? Barometric pressure? Meniere’s flaring up? I don’t think it’s the latter because the dizziness is wrong. I’ve already gone to the ENT once this month, so I’m visiting the GP today to see if it’s something he can figure out. If not it’s back to the ENT for another needle in the ear and the nasty taste of drugs in the back of my throat for two weeks. Fun. Fun. Fun.
…I mention all of this because I decided that this week was the week to try communicating with people, and I can tell that my writing is less than coherent. I’m hoping the above was coherent. Who knows? I won’t for at least a week. Also, I’m in the middle of reorganizing my website and my blog, as well as revisiting the wisdom of my presence on several social platforms and I will be leaving more than one of them, permanently. So I’m largely incommunicado and unwilling to compose text in my normal fashion because that has lead to a lot of time wasted trying to recover lost work when things go sideways. (see my last post) and what little conversation I am required to engage in is probably incoherent to at least one side of the conversation. Maybe even both. I’d really like to get away from the problems that started back in mid-August. This is getting old. Really old.
Editor’s note: November 8, 2018 – The spell finally seems to be passing, but the complete lack of change in the body politic of Texas has me in such a funk that I doubt I’ll be writing much of anything positive for awhile still. I have a few cutting polemics in mind, but the better angels of my nature may keep me from ever publishing them here. On the other hand, I’m about to go off on relatives on Facebook again, so the inner troll may also get access to the keyboard here. Stay tuned.
First things first. Get an editor that won’t eat my drafts while I’m composing. When I get that all worked out, I will certainly write about that process. Writing about it is part of the process.