Category Archives: Meniere’s

Status Update. A Lot of Hot Air.

The only time you’ll ever see
my #bedhead

So I’m finally feeling almost normal after our trip to Chicago. The day after we returned home, the sore throat that had been bugging me in Illinois turned into a full-blown sinus infection complete with glaring red pink-eye. This prompted a hasty trip to my immunologist and a series of antibiotics. I finished the ten day course of antibiotics on Wednesday, and had my first physical therapy session in three weeks on Thursday. I was bushed after the PT, but that was only part of the problems that surfaced this week.

Monday morning was the follow-up for the 90 day Betahistine (Serc) test that my ENT and I had been running. The results looked promising, and so I’m going to try upping the dose for a year and see what that gets me in the way of relief from Meniere’s symptoms. I’ve noticed that I seem to start exhibiting symptoms again before the next dose of Betahistine is due, so I’m going to take the same dosage three times a day. If you are a Meniere’s sufferer and you have triggers similar to mine, you probably should get your ENT to trial you on Betahistine and see if it helps you or not. I am curious to know if there is a sub-group of Menierians who benefit more from Betahistine than others. This data would clarify whether there is a benefit to Betahistine treatment or not. Comments on this subject are not only welcome but I’ll beg for them if I have to.

I’m feeling better, I thought. I should have known this was a prequel to the hell life had in store for me later in the week. On Wednesday the air conditioning dropped dead on us. It had been acting a little squirrely for awhile now and the system is nineteen years old. Several times over the last few years I had noticed that the thermostat didn’t seem to control the system like it should. It would sporadically fail to come on when it got too hot in the house, and would fail to turn off when it got cold. Sometimes the interior spaces got chilly enough that I thought seriously about wearing more clothing. On Monday, the system’s lackluster cooling performance lead me to do some basic troubleshooting and I noticed that it was well past time for a filter change. Changing the filter did seem to improve cooling and airflow, but Tuesday evening the fan wouldn’t start if we set the thermostat to cool, and Wednesday the fan said fuck it, I’m outta here and refused to start in any position. On or auto. Heat, cool or off. No dice and no air conditioning.

myhistoryfix.com

Ah, Texas in the summertime with no air conditioning! Back in the days before that invention every building in the region had ten or twelve foot ceilings and floor to ceiling windows that allowed cool air to enter the building from the lower sash, while simultaneously allowing the heat to escape the building from the upper sash (this is the origin of the term double-hung for the architecturally curious. Windows which can be opened from both top and bottom) and even then you slept outside on what was referred to as a sleeping porch because it was too hot to sleep indoors at all. Air conditioning changed architecture radically and not necessarily for the better. With the ability to alter indoor temperatures builders could ignore long-held rules of thumb that governed Southern construction, putting large glass facades on South-facing walls and lowering ceilings to the now-common eight foot height. Which is all just fine, as long as the air conditioning works.

So we called our handyman, but he was out of town for a week. Deeming it time to bite the bullet, we called a contractor we have dealt with successfully before, and they sent a guy out on Friday. Based on his estimation we had to replace parts just to see if the system could be revived or not. I’ve been down this road a few times. Replacing one part leads to replacing another part, which leads to replacing a third part until at some point you’ve rebuilt the entire system. As I mentioned previously, it’s a nineteen year old system. I can’t even get refrigerant for it anymore, legally. Spending money on this dinosaur is throwing good money after bad.

The heat and the humidity were threatening to send me spiraling back down into vertigo hell, but the salesman (comfort specialist) who showed up to pitch us on a new system came bearing gifts of window units. Consequently we were open to the idea of looking into replacing the ancient HVAC system. This was a theoretical possibility on Friday, a possibility that is rapidly gelling into a reality for Monday. So I’m taking this opportunity to start some renovations of my own that I’ve been wanting to get done since the first day we toured the place before buying it.

I won’t be raising the floor in the former garage yet, that project is a bit too ambitious even if it is desperately needed. The attic fan that has hulked above my head every time I climb the stairs is going away though. I’ve wanted that thing gone from the time we moved in. I can’t use it. It draws outside air into the house unfiltered. Everything outside wants to kill me with allergies. The last thing I need is something that pulls even more allergens into my breathing space. The window units alone are making my symptoms worse, I can feel vertigo perched above my head like an unwelcome avian visitor. Removing the attic fan means the upstairs HVAC will finally be properly balanced without the thing taking up attic real estate and letting attic heat into the living space.

Who knows, maybe other repairs and modification are following fast on the heels of the new HVAC system? Hope springs eternal, even for those cursed with chronic illness.

Then, methought, the air grew denser, perfumed from an unseen censer 
Swung by Seraphim whose foot-falls tinkled on the tufted floor.
“Wretch,” I cried, “thy God hath lent thee—by these angels he hath sent thee
Respite—respite and nepenthe from thy memories of Lenore;
Quaff, oh quaff this kind nepenthe and forget this lost Lenore!”
Quoth the Raven “Nevermore.”Edgar Allan Poe

I am the 99%

I know this photo is from 2011, part of the Occupy demonstrations that year. There were quite a few of these images released with the title “I am the 99 percent” about that time.

I reposted it today because of the events in Washington DC, where the congress and His Electoral Highness Donald J. Trump are trying to undo all the work done by President Obama. They are trying to repel the ACA which they nicknamed Obamacare specifically trying to denigrate his accomplishments and tar him with the failures of the policy they helped to shape. The ACA, deemed to be not going far enough by most Americans especially the ninety-nine percenters, and condemned as going too far by the most vocal minority segment (self-identified conservatives) of the electorate.

In what should have been an obvious if counter-intuitive turn, the same people who protested that Obama did not go far enough voted for what was popularly seen as the opposition party, the Republicans. However, what the Republicans are is the party that confined Obama to the minimum that he was able to do. What is now transpiring in Washington DC is what happens when fiscal conservatives who think they have a mandate propose doing exactly what the people who voted for them don’t want done. To the utter consternation of the public who doesn’t follow politics as maniacally as I do, the hardliners in the party think that this barbaric proposal they’ve dubbed the AHCA is not punishing enough. The hardliners want it to be more punishing on the poor, the sick and the disabled, the complete opposite of what the popular mandate was.

Candidate Trump in one of his only sane moments said he would protect Medicare and make sure that everyone had healthcare better than they did under Obamacare, the ACA. However, His Electoral Highness has also forgotten his own promises on the subject of healthcare in his efforts to rally the party that saw his stances of protecting Medicare and Social Security as being too liberal.

We now find ourselves caught in an example of the argumentum ad absurdum brought to life. The people who voted for one kind of change, people like the one in the image, discovering their representatives apparently do want to see them die in the streets after all. That the reason conservatives knew there were death panels in Obamacare was because they were planning on creating death panels themselves. Death panels staffed by health insurance insiders who want to protect their profits. I’d laugh at the absurdity of it, if only I weren’t so busy focusing on not giving in to vertigo.

When I stumbled across that image in my Facebook timeline for 2011, I was immediately struck by the notion that I could craft a similar statement. Mine would have to be computer printed like his because dysgraphia would make it take two days to write by hand. It would go something like this,

I worked for 30 years until my health failed me. Unable to sit or stand without pain or dizziness, move without assistance, constantly medicated, I faced a future where the only hope of seeing my family fed or for them to continue to have shelter was to apply for disability. The federal government refused to honor my claim for almost five years. They said I wasn’t really sick. They said I wasn’t an American. I had to proved that I was both before they would pay me anything even though I had faithfully paid my taxes for my entire life.

Now I must stay unemployed in order to keep my family fed and sheltered and keep my insurance, the only thing that allows me to live an almost normal life. In the meantime my wife and children do not qualify for aide because my disability payments amount to more income than is allowed for the poor to make and still qualify for benefits. I have better care with Medicare than any of them receive even though they live in my house and must subsist off of the meager payments the government provides for my disability.

I am the 99%

 If you voted for Republicans in the last election what happens next to people like me, people like him, will be entirely your fault. Think about that the next time you are tempted to complain about your taxes, or to vote for people who promise to save you money by taking a lifeline away from other people. You could well be me one day. Probably will be.

While the current word is that the AHCA is dead, we should never forget that the hardest of the hardliners, the most conservative of the conservatives, the ludicrously named Freedom Caucus, refused to vote for it because it didn’t strip enough benefits from the poor, the sick and the disabled. Think about that the next time you go to vote.


As of this writing, the Senate has postponed their version of the AHCA (which finally did pass the House, a meaningless achievement that they still celebrated on the White House lawn) it won’t come up for a vote until after the July 4th holiday. If there is any justice in this world, it will never be voted upon at all. It is a waste of time, a waste of lives and a waste of fortunes. What needs to happen now is Medicare for all, a basic level of coverage that every American chips in for, so that everyone pays into the system that we need when we get sick, and all of us will be sick at some point in our lives.

I am currently on Medicare and having the least trouble I’ve ever had getting my health problems tended to. Sadly, becoming chronically ill appears to have improved my overall health. That is what making your health a non-commodity will do for you. Make you healthier. 

The Burden of Chronic Illness

How do you get past the “why can’t you do its?” the (groan) “really? If I have to, I will.” Why can’t they just understand my limitations? I feel guilty asking my family to help me. 

I need to get out and do things, but I want to isolate myself from things that make me feel sicker. How can I do both? 

I became a different person after disability and handicap. After not being able to do many of the things that defined who I was to me. For me. First it was losing the ability to engage in paying work. Then it was household chores; mowing the lawn, working in the yard, even most dusting and sweeping (dust and mold allergies are my main Meniere’s triggers aside from stress)  I have been reduced to editorializing on life from the sanctity of my home office where I have reduced the distractions and triggers to a minimum.

I’m right there with you. I feel like I’m hiding and that is probably because I am. Hiding from my symptoms and their triggers. I don’t know if this is the right way to cope or not, but I’ll do what I have to do to get by, because that is the minimum standard I’ve set for myself.

I don’t know how you can communicate the limitations to the people around you. My wife and children are among the most supportive people I know and even they have to be reminded of my limitations sometimes.  I suggest trying not to take the grumping about unwanted burdens placed on those around you as personal attacks. The people who pick you up and care for you are caught in this situation with you. They have every bit as much right to be frustrated as you do.

I recommend frequent hugs, myself. I find them very therapeutic for everyone involved.

If you have daily vertigo spells to the point that you feel nauseated, you are precisely the kind of sufferer that the more drastic procedures for treating Meniere’s symptoms are for. If the injections do not give you relief, you should talk to your doctors about other more invasive treatments. If the vertigo doesn’t stop, you may have to face some of those consequences to make it stop. Making it stop occurring constantly, daily or weekly, is what every treatment out there is for. Keep looking til you find what works.

Just as important is the need to get people who understand your illness around you to support you. You need to get the feeling of vertigo across to the people you rely on. How helpless you are. Short of making them OD on alcohol or strapping them to the centerpost of a merry-go-round (no, don’t do that. Try getting them to read this) I’m not sure that everyone will ‘get’ what the problem is. My wife has been there for me since the beginning. I’d be dead now without her. If they (husbands or wives) can’t be made to see reason, then you need to find someone you can rely on to be there when you need it. You leave them (husbands or wives) when you find someone who cares, when you find someone who can help you with this.

This is what chronic illness is. You can’t get through it alone, and unfortunately we, your fellow sufferers on the internet, can’t be there for you in that way. We can’t be there to mop up and change the sheets. Can’t help tend children or cook or clean. Most of us wish we could, some of us know we’d be more of a liability than an asset. We can’t, but there are caring people out there. It is just a matter of finding them. Have faith in that.

This is the new normal for us. For anyone suffering from chronic illness. There is no other real way for us to approach it. To get past it. Embrace your limitations and do the best you can around them. We have to focus on the day to day. The here and now.

There can be no plans, no tomorrow, without someone willing to pick up the slack because there is going to be slack. We can’t kid ourselves about that fact. If it isn’t a limitation, it wouldn’t be an illness. It wouldn’t be a disability.

Maybe it’s just me. I don’t know. I’ve fought against disability all my life pretty much without realizing it. There have always been various limitations that I’ve just worked around. Meniere’s is just one more constraint that I don’t want and didn’t ask for, but there is no disputing its presence so make the best of it.

We can’t wish it away, god knows I’ve tried enough times. The closest I ever come to prayer is in the depths of a vertigo spell. “Just make it stop.” After awhile it becomes “just make it through this minute.” Then it progresses to “five more minutes.” Then ten, then fifteen, then onwards. If you get to the end of the attack, you get to see another day. Every morning you get to see, like the pilot who says “any landing you can walk away from” is a good one.

Enjoy the sunrise.

Sleep Apnea, Anxiety Dreams, Cpap Experience

Allergies have been kicking my ass for the last month. The Mother-in-Law has been declining in health for the last three months, requiring The Wife to be away for weeks at a time coordinating her care. This development has laid more burdens on my shoulders, more responsibility than I have had to maintain stress levels under than I have had to endure since going on disability.

The Son is a senior in high school, The Daughter has a job and neither of them drive yet. I have to train them to drive in one direction, getting them to their respective appointments on time in the process, and still be able to drive myself back home without triggering Meniere’s symptoms.

With all of this going on, health of relatives, my health, my children’s demands on my time, etc, I’ve still written more in the last few months than I have in years. You may well ask “why is that?” because I’m writing this article to tell you why that is, even though this is starting to feel like an infomercial from the inside, my writing of this piece.

I’m three months into my CPAP experience and I credit my clearly improved outlook to my much improved sleep patterns.

To start from the beginning; I don’t think I’ve ever slept right at any point in my life.  I have never gotten up in the morning on my own. It takes me hours to wake up (still does sometimes) to feel as if I am present in the world. Mornings have always been my enemy, and early arrivals have almost always been impossible to attain. The crime here is that I never thought to ask why this was.  Not one time.

I accepted the blame for attendance problems, all my life. You are lazy. You need discipline. You need to do this or that fad thing. More light at different times of the day. Take these sleep aids, take this wake up pill, drink coffee in the morning, etc, etc, etc. The list is never ending  and all of it has been wrong. All of it.

I used to get by on 4 hours of sleep a night, pretty routinely. Go to bed at 2am, wake up at 7am, go to work. Usually driving in the morning while not really feeling awake, having had to be shaken awake by The (ever faithful) Wife and pushed out the door with a cup of go juice after the mandatory wake up shower. I have always hated naps. I never feel like I wake up from a nap. The lethargy just continues until I succumb to sleep for several hours.

Weekends were sleep catch up times (something which has been demonstrated not to work) we would sleep well into the afternoon most Saturdays and Sundays, and still not feel well rested come Monday morning when the process started all over again.

Then the Meniere’s symptoms got worse, expanding from the Fall and Spring weeks of suffering to the months of suffering to almost every other day suffering. Rotational vertigo every week, sometimes more than once a week. I had to stop working. I had to figure out what went wrong. Why was this happening to me?

When I started paying attention to how I felt, when I started allowing myself to follow my own rhythms rather than the imposed rhythms of modern society; sleep when I was tired, eat when I was hungry, expend effort when I felt strong enough, I started noticing something about my sleep.

I slept way, way too long.  I’m not talking about 9 or 10 hours. Sixteen hours was common, sometimes as long as a full 24 hours. At first we chalked this up to the side effects of the anti-nausea drugs for vertigo symptoms.  I’ve always been easy to medicate. I’m a lightweight drinker, and generally another person’s half-dose of medication will have the desired effect on me. But the long sleep wasn’t limited to days when I had been taking medication. I also had very, very long periods of intense dreaming sleep. I’ve written about a few of these in the past.  Most of them were unintelligible upon waking, but I really enjoyed them while in them.

Finally this year I decided to start looking into my sleep patterns to see if there was something that could actually be done to get me to sleep something like normal hours. Normal in a modern sense, not a historical sense, which is different.

So I went to see a sleep specialist on the advice of one of my doctors. The sleep specialist said sleep apnea before I was even scheduled for a test. So after getting another doctor (second opinion time) to understand that I actually wanted to be tested first, we did the sleep study. Turns out that I stop breathing just under 30 times an hour while I am asleep. So a second study wearing the CPAP mask was scheduled.

I was very anxious about sleeping with a CPAP mask.  Sleeping with a mask on has always horrified me, in an Alien stuck to your face kind of way.  Don’t believe me?

May 19, 2016 2:52 pm 

Just woke up from another intense dream. Another architecture dream.  But the dream wasn’t architecture, the dream was a video game.  The particulars of the dream, the game, the architecture in the game, are not important.

What is important is the meaning of the dream, the game, the architecture. I awoke with a profound sense of loss.  A future fraught with anguish. Is this what my life is now?  Am I defined by my abilities to play a game? It’s been 8 years or so since I picked up World of Warcraft. On the one hand it has kept me attached to people, given me a reason to get out of bed even if I didn’t feel like doing anything besides stare at a screen. On the other hand it consumes a lot of time that I increasingly feel should be devoted elsewhere, if only I felt well enough often enough to do something else. 

If that is true, that I am defined by my abilities to play a game, then even by that limited measure I’m not doing too good.  I cannot see the game well enough to follow the various bits on the screen and know where to move in time to keep myself alive. As a raid healer, that is a serious problem. I not only have to stay alive, I have to keep others alive.  When they start telling you “your job is to stay alive” they are including you in their raid out of the kindness of their hearts and not much else. 

My health is deteriorating further.  The dreams are a signal.  They have become more intense and lengthy as my health has worsened.  I can fall asleep one day and wake up almost a full day later and not feel as if I have rested.  How is this even possible? The notion that someone who used to brag about being able to get by on 4 (and one half. Most important bit that last half) hours of sleep a night could sleep  9, 10, 12, 16, 28 hours and not feel rested is baffling. 

So I’m seeing sleep specialists now.  Sleep specialists who are hinting that my sleep has probably never been normal.  That I have a problem with sleeping that they can fix. Should I let them fix it?  The dreams are all I have anymore.  If they make the dreams go away, what will be left that is mine? 

So the anguished dream I just woke up from? 

I know I am real, but the characters in the dream, they are movie characters even though they stand in for caricatures of my bosses from the past.  Frank Gaffney is in charge of the firm.  Grace Ripley (blonde in a blue wig?) runs all the operations. The game is part of the business, the architecture of the story.  The game mirrors the events that occur in the ‘reality’ of the job, serving as an oracle for what happens next. Except that the dream, the reality, is coming to an end. The game is bugged and can’t be completed.  It has to be reset.  It resets reality. The characters reform in different roles and the game/reality starts over. 

Without my dreams, what am I?  If my dreams directed me to take up architecture, informed my designs and my goals, will fixing the sleep problem I’ve apparently had all my life destroy the creative side of my life?  Will I finally fully wake up and discover all of it was a dream?  The certificates and licenses? The rolls of drawings?  The wife and children? What is real? What is the dream? I don’t think I can tell anymore. 

I am stuck.  Stuck in a cycle that has to be ended. I have to figure out what is ailing me so that I can get back to some sense of normality.  I cannot continue to sleep for extended periods and marvel at the texture of the dreams. I guess it is time to really wake up.  Hope I see everyone on the other side of treatment.  Would hate to lose anyone to a reset.

Trussed up like a Christmas turkey

This was the dream before going in for the CPAP test. It is too grim, The Wife objected. So I decided to sit on it until after the test was completed.  Let my fears remain unvoiced for the time being. But I did vow to start this article at the time. I would record my thoughts about my CPAP experience during and after the diagnosis and treatment.

The weird part is, once I tried sleeping with the mask on, I knew I was hooked. Right away. The first test was torture. The wires woke me up. The sensors woke me up. I tossed and turned all night. The second test, the test with the mask on, was the best sleep I had had in years. Years.  Longer than I could even remember. Never even noticed the wires and sensors until the next morning. Breakfast was ecstasy. My mind bounced everywhere.

I quite literally could not wait to get a machine for the house so that I could try it out regularly in an environment that I felt was comfortable.  That process took a few weeks. Medicare pays, but it isn’t fast about doing it. Eventually I did get a machine for the house and that is when the actual work with the machine, the company that supplied the machine, started.

From the first night I realized that I needed to get something to hold my mouth closed at night. I would wake up with my mouth dry as a bone. The chin strap they sent me was of cheap manufacture, but The Wife is the granddaughter of a seamstress, so there was a remedy for that cheap chinstrap that fell apart problem.

Getting the supplies from the machine supplier is probably the most worrisome part of this process. They are completely unwilling to give you extra parts just in case you might need to swap out straps or masks or filters or anything.

Other than that process, dealing with insurers and medical aid suppliers, the experience with the machine has been pretty smooth sailing so far. I put on my flight mask at night and “ascend to 15,000 feet.” I am in my third month with the machine and although I still sleep as much as twelve or 13 hours on occasion (especially when the allergies trigger Meniere’s. Like today) I can get up in the morning when I need to, for the first time since early in my career as a draftsman. Get The Son to school on time with more regularity than we’ve probably done in his entire life.

I haven’t had time to play many games, what with all the other problems that have had to be dealt with this summer.  I think I only managed to go swimming one time, which is a record for me. I generally spend days at a time in the pool. Not this summer. There was definitely no time to start the new version of World of Warcraft, even if I had wanted to (luckily I didn’t) and I still haven’t finished the one game I wanted to play, Skyrim.

I have done some writing though, a lot more writing than I really felt I could pull off. I’m still working on some other articles that I have to publish before the election ends, but I have little fear I’ll get to those too, as well as pick up some articles I’ve left laying around for far too long.

Best of all, the dreams continue. I don’t know why I have these extended dream periods, but I am thankful for them. They are more hopeful these days, at least. Not fraught with horrors and endings like they had been for the last decade or so. Still pretty grim, but a better shade of grim. I’ll take that.

Brain Fog

Three days ago I looked at the front page of this blog.  Who Gives a Shit About Iowa? Have I not written anything since then? WTF?

I’ve had several interesting conversations since writing that piece. I’ve had two or three good ideas (one of which will be applied to the next chapter of EPHN if I ever get around to completing the one I’m working on) None of the stuff I come up with gets beyond notes phase. None of it gets beyond notes phase because essentially, I have no brain. The problem I’m having is one of the symptoms of Meniere’s, one that half the medical community says isn’t real. Those of us who have Meniere’s know differently. We call it brain fog.  I’m struggling with it right now, so please bear with me.

I’m trying to write today even though I have trouble forming basic thoughts because this is yet another part of the disease that plagues my every moment, and I don’t really bother to talk about it to anyone outside the wife, the daughter and the son.

Brain fog.  It’s like the insides of my head are full of cotton wool. Like the frontal lobes of my brain (had to look that up, sadly) have electrical current running through them, and conscious thought is elusive. Just beyond reach.  Most frequently brought on by vertigo attacks, it can show up without notice any time the pressure in the ears change, the tinnitus changes, the headaches start or stop. You name it. I think I had a vertigo attack while sleeping last night because I went to bed early and dizzy. I woke up the drooling genius searching for keys on his keyboard that I am now.

When I woke up seven hours ago I thought about writing this piece.  Clever ideas about what to say, ideas about how to express myself floated in one side of my head and out the other.  They are lost to me now.  I keep hearing the voice of the antagonist from Spock’s Brain “I put the teacher on my head” a frequent joke around the house when one of us is forgetful.

But it really isn’t a joke when I feel this way.  Ah, to have access to a device that would put the knowledge back in my head. To restore the mental acuity that I usually take for granted but is so lacking now (took a full 30 seconds to come up with the word acuity) I’m torn between stomping my feet in mock anger “brain, brain what is brain?” or just going with the flow and embracing the silence.

The above is another inside joke around this house, as frequently referenced as Spock’s Brain.  At least Earth Girls are Easy was meant to be funny. If only I was blond and female I could make vapid work for me.  Guys without brains or muscle aren’t of much use.  The Wife is blond and generally smarter than me when I’m like this. Some would tell you she is always smarter.  Can’t argue with that right now.

So I’m going back to my marathon of Better Call Saul. Been meaning to watch that anyway and it is complex enough that I actually have to watch it or I’ll miss something, unlike most television. Finished the Expanse yesterday and there won’t be new Walking Dead till Sunday.  I’ll find something else to watch when I finish that. Hopefully this fog will pass soon and I’ll have something more substantive to say.

(This post subject to edit or deletion when the brain returns. Come back soon, brain)

Rotational Vertigo

I’ve had several requests to describe what Rotational Vertigo feels like to me.  It is actually quite hard to describe in a way that the average person might be able to visualize. When I’m pressed for time I frequently say something like imagine the worst drunken binge you’ve ever been on. For most people (a majority, sadly) that gets an enlightened response.

But that really doesn’t do the symptom justice.  For me, being drunk (even mildly intoxicated) can be vertigo inducing, has always been vertigo inducing.  I don’t drink and go to sleep anymore. That almost never happens.  If I feel like having a glass or two of brandy or cognac, I’m generally up for the duration of the effect (8 hours or so) because lying down makes the vertigo worse.

So what is rotational vertigo really like?

First, imagine you are at the center of a merry-go-round.  The merry-go-round is spinning. It doesn’t even have to spin fast, it can spin quite slowly, just enough that you can’t fixate on a single point in the background.

This is the key problem with the spinning. It isn’t real, but your body doesn’t know this.  Your body doesn’t know that the balance mechanism in the ears is broken. So your eyes try to track the spin that isn’t there, causing your vision to dance back and forth (this is why reading can be a chore when you have a problem with vertigo) mimicking the spin the balance mechanism says is occurring.

So you are on a spinning merry-go-round. Now imagine that every stationary object you want to interact with is spinning at the same rate. There is no fixed point to anchor to (if you concentrate really hard you might just be able to override this. Maybe) so the handrails on the stairway, the walls of the shower, the glass of water to wash your pills down with dance madly around you while you try vainly to grab them from thin air.

Now imagine that this dance continues for the rest of your life; figuratively, if not in reality. Because it feels like forever. I’ve fought this thing for days at a time in the past, just because I’d already slept for what felt like days and I just couldn’t sleep anymore no matter how many pills I took.

I can’t describe it better than that. I don’t dare go looking for video to describe it.  Just seeing video that includes rotation in the theater can bring on sympathetic feelings of spinning.  I frequently must look away from films with rapid rotation (Gravity was torturous. Loved that film, couldn’t watch half of it. Go see Gravity in the IMax and sit real close with your hands trapped at your sides) or hold my hands up in front of my face so that I can see that there is a stationary object in view.

The real answer is you don’t want to know.  You can trust me on this subject.


So how should I treat it? is the question you are probably left with if you have this symptom.

Treating Meniere’s & Its Symptoms covers general treatment suggestions for Meniere’s. Dizziness and vertigo are so common that they rate a separate discussion.

There are various treatments for re-aligning the otoconia in the inner ear, which is frequently the culprit causing dizziness and vertigo. I’ve tried a few of them for persistent dizziness (dizziness that lasts several days) with limited success. The half-somersault maneuver looks like one of those kinds of treatments.

If the problem is the otoconia then this kind of treatment should alleviate the problem. If it isn’t then it won’t. It is pretty straight-forward to just try these procedures if the vertigo doesn’t let up after a few hours. You are liable to find that it won’t help for meniere’s vertigo and dizziness. If you still feel dizzy it is probably a good idea to see a specialist before ruling this kind of treatment out entirely. I have given up on them unless it is a specific kind of dizziness that I recognize as being different from the Meniere’s.

from My Neighbor Totoro

The one thing I have found that helps for vertigo and dizziness aside from drugs is finding a head position and/or a focus point to stare at. I personally find that turning the head slightly to my right (I am afflicted in the left ear) and looking slightly downward is the best position for me. I have a catbus that sits near the correct position next to the bed. A friendly catbus that smiles its chesire grin at me while I try desperately not to spin.

It helps long enough for the drugs to kick in, or until the spell passes. One or the other of these two things will occur eventually. 

Sidelined Due to Illness

Sports metaphor.  That should be the first sign I’m not myself.  I have no use for sports, but an upbringing at the foot of a man who never missed a game (Baseball, Football, you name it) has layered my subconscious with a multiplicity of sports metaphors that lend themselves to almost any situation.  Sadly.

Was working on a piece for the blog a week ago when this latest round of Meniere’s fun started.  Haven’t had a spell like this in living memory.  I’ve had short-term worse recently (a drop attack about a month ago lasted less than 10 hours) but I haven’t felt this ill for this long since I gave up work in 2005.

I have been on the Meclizine for the last few days. The affected ear has been hypertussive (all sound hurts) for over a week now. The tinnitus has been off the charts loud, and I’ve been off and on vertiginous for the whole time. Every thought feels like it has to be forced through jelly to get out of my head and onto the page.  More than a week avoiding sound, bright lights, etc.  Going a bit stir crazy, I think.

I’m pretty sure this is my allergies acting up. I haven’t been eating or doing anything out of the ordinary that could have caused it.  Unless the excavation going on in the neighbor’s back yard is releasing something into the air (mostly joking) I can’t think of anything else that could be the cause.

Which is the big problem with this disease.  It just hits you.  You’re down, can’t think of anything you might have done wrong, so you play association games trying to figure out what triggered this attack that you’d rather die from than suffer through.  That’s how you get to conclusions like low-salt diets and alcohol and caffeine causing the symptoms.  The truth is that there doesn’t need to be a cause, and nothing you remember doing actually is as fault.  It is a disease, and the symptoms occur because you have it.

Allergies are a known trigger with me, though. Pollen levels for various plants are generally elevated when my symptoms are bad. It was spring and fall pollen season that first triggered symptoms for me way back in the 1980’s and 90’s. To top it off I quit getting my allergy shots a few years back because I had concluded that I wasn’t getting any additional benefit from continuing them.  I had been getting shots for over a decade, I really didn’t see the point in continuing.

Given what I’m suffering through now, perhaps stopping treatment was a mistake. Time to head back to the allergist and see if the shots can’t get me back to something resembling normalcy.  Shots twice a week again, really looking forward to that.  Beats the alternative, as the saying goes.


Woke up to a Huffpost story on chronic pain in my Twitter feed. 15 things no one tells you about chronic pain as a 20-something. I identified with number 4 on the list almost immediately, since the first order of business today was to take my first shower since Friday or Sunday. Given that I can’t remember when it was, combined with my inability to stand my own smell, today is shower day one way or the other.

It was glorious and at the same time frightening, since balance in the shower is of paramount importance.  I try not to think about how clean the shower walls are when leaning on them.  Cleaner than I am after 5 days, in any case. Now back to vegitating and re-watching last season of The Walking Dead.  Prepping for next season early, since in my currently hazy state I barely remember watching the episodes before anyway.


I posted this on the 13th of July.  It was July 8th when I started the piece I wanted to write next. Today (July 21st) I finally got out of the house and went for a three mile walk.  First time I’ve gone on a decent walk since (checking Endomondo) the 10th. My how time crawls when stuck in a rut.  Felt like it had been a month or more.  Got dizzy while walking but I’ll take it. Best day in over a week so far.


I gave up updating this every day that I felt moderately well enough to write. On my birthday it was a month since I wrote this piece and today (August 22nd) I felt like writing; felt like writing if only my ears would stop trying to pop out of the side of my head.

I received a brand new Nexus 5 for my birthday, and that has kept me beautifully distracted since I got it. I can finally play some of the games I’ve been wanting to play and install several apps that just were too big for the HTC Evo Shift that I’ve been using for the last two years. My heartfelt thanks to the friends and family who made the gift possible.  It really was the only thing I wanted, one of the few things I can use while essentially bedridden for days at a time.

But I don’t write on a phone, I write on a keyboard. I have to feel well enough to get out of bed, not collapse in the easy chair with Netflix to comfort me, sit down in front of a computer or with a laptop and write. Then I have to have something in mind to write about.

Back to the ears again. Pressure and sensitivity to sound again today.  The tinnitus drowns out thought and makes long chains of reasoning virtually impossible. Next week I will go to the allergist and probably get myself tested again, start shots again.  I don’t know what else to do, so I’ll return to allergy treatments and see if that helps.

Just felt like letting everyone know I was still alive.  Here’s a picture of my dog wearing my walking hat to cheer everyone up;

My Blog entry on Treating Meniere’s & Its Symptoms.  A frequently referenced post for me.

Meniere’s Awareness

It seems silly to me that people still don’t know what Meniere’s is. I guess that is because it has become so central to my life these days.  For the last couple of weeks I’ve toyed with writing several articles on various subjects, including some work on short fiction that I’d like to finish someday.

But for the entirety of these last few weeks my hearing has been burdened by painful tinnitus. So loud that I can’t even soothe the sound away with rainymood or any other white noise treatment. I have a hard time forcing coherent thoughts through a barrier of noise that impenetrable, much less the capacity for multiple readings necessary to weed out all the random keystrokes that slip in when you aren’t paying attention.

I wandered over to a fellow sufferer’s blog earlier today (thanks to my reddit habit) and noticed he had put a new entry up on it. For those of you who don’t know what Meniere’s is, I’ll post a short quote;

Symptomatically, most people experience “attacks” of violent rotational vertigo (feeling like the room is spinning), a feeling of fullness and pressure in the affected ear, loud ringing known as tinnitus, and progressive hearing loss. Many sufferers also report nausea, cognitive impairment (brain fog), fatigue, anxiety, and depression.

Meniere’s disease affects .2% of the population, roughly the same rate of incidence as Multiple Sclerosis. Yet virtually no one has ever heard of Meniere’s disease.

Here’s the bit that caught my attention. A study I’d never run across conducted in 2000. The sample size is on the small side, but it still represents a statistically valid group.  The attention grabbing quote was this one;

“Meniere’s disease patients are among the most severely impaired non-hospitalized patients studied thus far … Patients describe impairment in travel, ambulation, work and other major social roles as well as trouble learning, remembering and thinking clearly.”

While this is clearly hyperbole from an unknown author (I can’t seem to track down the original article quoted) the dense jargon in the study backs up the statement. Quality of life is reduced below the levels of deathly ill cancer patients.  Very few of my vertigo attacks (frequently referred to as drop attacks)  didn’t include my begging everyone in earshot to please kill me.  The sensations are intolerable, and yet you have to tolerate them. You cannot escape them. Had someone offered me an easy way to end it all while in a vertiginous state, I would have readily taken them up on it.

That is what Meniere’s is like on the bad days.  On the good days I just kick myself for being unable to accomplish the simplest tasks because I’m lucky to remember my name from one minute to the next, like the last two weeks have been.  There are days I forget. Mercifully, there are whole months that go by and I’m not forced to remember why I’m not working in architecture anymore. Looking forward to having a few of those days sometime in the hopefully not too distant future.

Back to the point.  The point of writing this. Meniere’s awareness. At the bottom of the Mind Over Meniere’s post (I hate that blog name. Sorry. I’m sure mine is annoying to many as well) is a link to yet another Change.org petition. One amongst thousands. This one seems silly, but maybe it will have a genuine effect if Bono can be convinced to help raise Meniere’s awareness.  Who knows? Couldn’t hurt to have someone say the word Meniere’s in front of a crowded audience.  Surely someone will notice.

The song they’re asking him to announce in front of is Vertigo. It goes to show you how far out of music that I am; I don’t think I’ve even heard the song before. There was a day when I knew every artist on the charts. Knew who they were and what they sang.  The last thing I remember U2 doing was Joshua Tree.  Are they still a thing?

Anyway. Sign the petition if you are so inclined. Maybe it works, maybe it doesn’t. All I know is that I want this damn ear to stop ringing so I can organize a few thoughts.

Getting Disability; a Record of the Process.

I’ve been meaning to write this post for years.  When I started the process in 2005, I never dreamed that it would take me several years and multiple advocates just to secure the disability income that I had paid for through my taxes for my entire life. But it did, and when it was finally finished my then attorney said “you should write this all down so that other people can find out how this is done.  I’ll even refer my clients to it” (going to hold her to that one) but months turned into years, memory fades, depression is an evil beast, and procrastination is a self-fulfilling prophecy.

A few days ago a Facebook friend of mine posted a link to an article about Alecia Pennington. Now, I don’t know how much of her story is true, but her tale of being denied basic services due to lack of documentation reminded me of the troubles I went through getting my disability approved.

…and it all started with the lack of a US birth certificate.  Well, actually it started with a friend of a friend who said he could act as my advocate for my Social Security claim, but several years later it ended with my getting my own passport.

I gave up working very grudgingly. I had been out of work for months before my last job, I worked some contracts but mostly just looked for work and wished I could get hired on somewhere. This went on for at least a year, and then I was offered two jobs simultaneously. One in Las Vegas that would have required me to move the whole family (I’m actually glad I didn’t take that one now) and one here in Austin working for an architect who was adamant he needed me.  Knew what I was good at, was aware of what my health was like, needed me to save his business (this was how he phrased it to me) So I agreed to go work for him and turned down more money from the Las Vegas job.

I spent eight months working for him.  Eight months of learning another CAD system (I think that’s 5 different CAD platforms) documenting the tools for other users in the firm, automating the process of modeling and document production as much as possible, and producing finish-out drawings for an office space in less than a day to demonstrate how the process could be completed quickly. That work, the kind of managerial design work I loved getting into, coupled with spending an excessive amount of time on paper getting to that point, through weekly active vertigo and the accompanying brain fog that slows mental processes most of the time. I spent months finishing the modeling and documentation on the building that was my primary responsibility, when it probably should have been finished in weeks. That fumble that I couldn’t explain outside of sickness ultimately left me jobless again with a family to feed and even fewer possibilities than I had a year previously.

I was able to get commended for producing an entire project’s documents in a single day, and get fired for being sick too much, all within the same 8 month period. 

I was literally hopeless at that point.  I didn’t know what else I could do, and the bills kept coming in, with my health care incurring mounting costs of its own. I was spending a lot of time helping a wheelchair bound family friend then, and she suggested I contact a friend of hers to see if disability was a possibility.  Given that the only remaining choice that appeared to me was life insurance coupled with a fatal accident, I figured I’d give the government a chance to own up to the promise that I could rely on it to be there when I was in need. So I called her friend, and we started the process.

First off, you have to have doctors on your side.  You have to have a medical finding, in writing, that you have an illness which is covered as a disability.  Luckily for me Meniere’s is one of those illnesses, and I had an ENT who was happy to back up my disability claim. We filled out and filed the documents and waited.

You do a lot of waiting when dealing with the government. Every time I mention filing or documents, you should understand that at least a month goes by before there is a response.  That is if you are lucky.  If you aren’t lucky they lose your paperwork and you have to refile and wait another month.  It’s also worth noting that every single application for disability will be denied the first time. So if you don’t intend to appeal, don’t even start.

So we appealed and went to the scheduled meeting. The appeal was denied. This was the point when I realized that what I needed wasn’t just an advocate for my Social Security disability claim.  I needed an attorney, because the advocate I had just shrugged and told me he tried.

After finding a reputable disability attorney (if you are thinking of pursuing disability, start by getting an attorney on your side and save yourself some time) we started another application through the process.  This one had secondary documentation and signed affidavits from witnesses. This one was also denied the first time through. It was appealed. It was denied.  It was appealed again. Ultimately my attorney called me one day and told me “the Meniere’s isn’t enough”.  She paused for a bit.  “Do you think you are depressed?”

Am I depressed? Well, I couldn’t very well admit that suicide was my only other alternative to government assistance (not without ruining the viability of that option) if I wanted to see my family fed, so I had to admit that I was struggling with just a little bit of depression. The entire tone of the conversation changed at that point.  She said something like that will make it much easier for me and got back to work on my case.

I had almost given up the faint hope that disability would offer, when the approval for my claim finally came through.  After two years of applications, denials and appeals, I was approved for disability payments.  Just in time, because we had scraped out the last of our savings and were in the process of hocking valuable items in order to get the bills paid that month.

Just one problem.  One tiny little hitch.  Hardly worth the bother, really.  See here, Ray Anthony Steele, you aren’t really a U.S. citizen.

Excuse me

I’ve paid taxes my entire working life, starting at age sixteen. I’ve never failed to file, I’ve never failed to pay. I even paid twice some years. Every time that the IRS audited me I wrote them another check, and they audited me every year that I was a card-carrying member of the Libertarian Party.  I’ve paid my dues for 30 years, I think I’m a member of this club, and I would be except for one tiny little problem.

When getting a Social Security card, make sure that you bring with you all the documentation required to prove US citizenship; do not, under any circumstances, allow the person handling your application to harbor any illusions that you are not 100% a US citizen or allow them to submit the application without insuring that the box “US citizen” is checked.  This is of paramount importance.

I was born overseas to parents who were in the military, stationed overseas. The hospital on the base where my parents were stationed didn’t have the ability to handle a premature birth, and I was early according to the doctor’s charts. So my mom went to where the premature birth care was, a hospital off-base that wasn’t considered part of US territory. All US military bases are considered part of the US, just as all embassies are considered part of the country they represent. I wasn’t born on the base, I was born in England, at the hospital my mom had been sent to by the military doctors. As a consequence of this, I have dual citizenship.  I’m a limey (it explains my love of a cuppa) as well as a US citizen. I have one of those birth certificates that makes conservatives sleep poorly at night knowing I live next to them.

When I got my Social Security card back in the dark ages before computers, we went in with my British birth certificate.  They told us no problem and marked me down as not a US citizen. Forty years later, it really is a problem after all.  It’s a problem because that little notation on my Social Security record means I can’t claim benefits from the US government. So long, don’t let the door hit you on the ass on the way out.  It matters not at all that taxes are deducted from our paychecks every time we earn a wage.  It doesn’t matter that both our parents are American citizens. What matters is the checkbox next to US citizen on the Social Security form. Believe it or not it is true. Foreigners can not qualify for benefits.

According to the computers at the Social Security Administration, I wasn’t a citizen. We had stumbled across this fact earlier in the process and when it was noticed by the Social Security representative who filed my paperwork I was assured that if the claim was validated, the citizenship problem wouldn’t be an issue. I believe the phrase not a problem was repeated then, too. Except it was.  Because my birth certificate is British.  Very clearly British and not American.  What was needed to clear this up was a record from the embassy in London stating that I was an American citizen born to US parents. This was a piece of paper I didn’t’ have.

The document I wished I had at that point.

At this point I started talking to immigration attorneys. Immigration law is a tangled jungle of lies and deception; and nobody, not even non-immigration attorneys have a clue how immigration decisions are rendered. I’m not even sure immigration attorneys know.  I did find out that the specific document I needed was called a council record.  If I could find that document it would prove that I was an American citizen born abroad, and I would qualify for disability.

I didn’t have a council record. I had never seen said document before. I had no idea what it looked like, so I started talking to relatives. I talked to my mom first. She remembered that I came into the country on her passport, that I was listed as a US citizen when I entered the country. Unfortunately she couldn’t find that old passport, it had been lost somewhere in the 20 or so family moves that had occurred since the 1960’s. So I went back to the immigration attorney.

He told me it was possible to request a copy of the passport, if I was listed on the passport. So I found that form, filled it out, got it notarized and sent it in. Then I waited. I waited a long time, longer than any of the other times I waited on a government response. They eventually did find and mail the passport record back to me, and I was able to use that record to apply for my own passport, and that passport made me a citizen.

The government said congratulations citizen.  Here’s your first check. Hang on now. This check is for one month. I’ve been working on this process to complete for nearly 4 years now. Am I not owed disability since the date of my first application? Well, yes that would be true if I had been a citizen when I first applied. But you see this date on your passport, the one saying it was issued last month? That is when you became a citizen. Once again, have a nice day, don’t let the door…   Nothing doing. Four years I’ve been at this. Four fucking years. I’m not stopping till I get my four years of blood back.

At this point I’m trying to exude patience and understanding, just to see if I can get through to the bureaucrat on the other side of the desk.  I have this passport because my mother brought me back to the US on her passport back in the 1960’s.  That passport makes me a citizen. Says so right on this document. Well, that might be true, but that just means your mother was a citizen and she brought you home with her.  Was your father a citizen?

Was my father a citizen? Was my father a citizen? Well, he was in the US military at the time I was conceived, so for all of our sakes I hope he was. I mean, we don’t want any foreigners fighting in our ranks or having sex with our women, that would be unthinkable.

Robert Allen, the reason
I’m stuck with Ray Anthony

I don’t know my biological father. I sent the man an invitation to my high school graduation even though I had never met him in living memory. He never replied, never attempted to get in touch with me. For all I knew he didn’t even care if I was alive or not. I was raised by two different men instead of by my biological father and both of them tried to be dad and failed in various ways. I have never seen a page of correspondence from my biological father anywhere in any record that I kept or my mother kept.  He’s a cipher to me. A complete unknown. I wouldn’t know where to even contact him at this point. I don’t know if he is still alive (not sure if I care either) I’m sure he had a Social Security number, I’m sure he was a citizen. I’m sure he has a military record.  I have no idea how that information is dredged up without contacting his family, which had also been tried previously and ended in failure.

So I asked the Social Security administration if they knew how to find his number, how to track down his military record. I started putting out feelers, once again trying to get that information, looking for his family to contact. At that point I finally had a stroke of luck, the Social Security administration, came up with the information all by themselves, attaching his file to mine and approving the back payments.

There was a year or two of argument about paying my attorney and discovering that they had withheld two attorneys worth of money from my back payments so they should give me money rather than try to take money away from me, but at least I got them to admit that I really was a citizen after all. That (and the money) was satisfaction enough.

Then my dad died.  Not the cipher, the man I never knew. The man who tried hardest to be dad, to care. The man I could rely on even though he wasn’t married to my mom anymore. He died after a decade of battle with cancer. He made up for his earlier failures, and I accepted his apologies and considered him my dad for a good number of years before the end, even though his genes are not mine. I loved him. I loved his family and their history. I was very sad to see him go.

While we were in Colorado preparing for the funeral, going through old records and photos, reminiscing about the past, his last wife (my second mom. I think I have 4 now. Maybe even 5. Well, mom is mom, but then there are other moms. Yes, it’s confusing) she was suddenly struck with a memory. When they were going through the attic at gramma’s house preparing it for sale, they stumbled across a box of stuff that had been shipped back to the US from England when mom moved back to the States with me. There was a document about me in the box, and she didn’t know if it was important but she thought I’d want to keep it. After rummaging around in a drawer for a few minutes, she produced the Council Record that would have saved me years of work had I only known who to talk to about it. I just thanked her and gave her a hug. What else are you going to do, at that point?

That’s it.  That’s my disability story finally written.  I should probably see if I can remember what the appeals courts were called, track down the document numbers for the documents I submitted, just for clarity’s sake.  But right now I just want to step back and admire the fact that I’ve written this damn thing.  It took me long enough. Longer than it took to get my disability approved? Just about.

Treating Meniere’s & Its Symptoms

I get this sort of question a lot “what do you do to combat Menieres?” or “What symptoms do you have?” The latter is asked because not everyone diagnosed with Meniere’s actually has all the symptoms associated with the disease. The former is usually asked because; rather than there being no information available on the subject online, there is a lot of contradictory information from a myriad of sources. I’m going to make a concerted effort to cut through the noise and just tell you about the experience I have with Meniere’s and how I approach treatment.

Symptoms.

Let me tell you about my Meniere’s, since I haven’t done a thorough reporting of symptoms (ever) and really haven’t talked about the disease since I first started this blog in 2005.

Starting about 2002, I would be subject to regular bouts of rotational vertigo that came on quite suddenly. My first vertigo attack occurred as a single incident many years earlier, probably sometime in 1984. That instance I triggered myself by accident while trying to clear pressure in my left ear that I had just started noticing. I was sitting in a hot shower in an attempt to make the blockage in the ear pass, and when it finally did I found I was lying down in the shower and so dizzy that I couldn’t walk. I crawled to the bed and got in it, afraid that I might have done myself permanent damage, but woke up the next day feeling tired but no worse for wear overall. Best of all the ear pressure seemed to be gone, which lead to subsequent years of sitting in hot rooms including a sauna a few times, trying desperately to relieve the pressure in my head.

When I first started having subsequent and almost regular vertigo spells, they seemed to be related to allergies and those times of year (spring and fall) when my allergies had always bugged me, also accompanied by the annoying pressure in the ear. As time progressed the vertigo spells became more generalized and could be brought on by high pressure weather, or just turning my head the wrong way.  These bouts of vertigo seemed to last anywhere from 6 hours to a full day, and caused me to miss two days of work. Towards the end of my work life I was getting vertigo about once a week, making my average work week 3 days in length. This kind of attendance pattern does not produce enough work for most employers. I was definitely not working enough for an architecture environment. Consequently I was fired from my last job for being sick too much, even though I accepted the job with the stipulation that I was frequently ill.

Now that I am on disability and free to manage stress for myself, I’m lucky if I can go a month or two without vertigo which I consider a huge success.

The vertigo is just the most visible symptom of the disease.  Almost as debilitating is the constant tinnitus, which comes close to drowning out normal conversation and makes concentration very difficult.  The tinnitus never stops.  Sometimes it is loud, sometimes it is soft, and sometimes it causes the affected ear to amplify what little sound it hears, a condition known as hyperacusismaking even the smallest of sounds painful and sending me into a room by myself so that I can keep things as quiet as possible.

Then there is the pressure in the ear that I mentioned previously. Like the tinnitus this varies in discomfort, sometimes a nagging ache, other times a stabbing pain as if some fluid containing vessel in the ear is about to burst. The pressure in the ear is often a precursor to vertigo.  If I get a metallic taste in the mouth with a sudden surge of pressure, I hit the medication immediately.  Paying attention to how I’m feeling on any given day is how I’ve managed to keep the vertigo to a minimum through the years of disability. Which brings me to…

Treatment.


The Ear, Nose and Throat doctor (ENT) informed me in 2015 that the hearing in my affected ear (left ear) is about half of what it should be and is still getting worse.  That is apparently the point that most sufferers opt to have procedures done in order to alleviate symptoms. There are a couple of interventions available to me, but neither of them offer better than 60% chance of long-term relief, so I’m not jumping up and down to have any of them done. Gentamicin injection into the cochlea is the procedure he wanted me to do. This is not happening unless the vertigo gets worse. There is also a surgical procedure or two that will interrupt the signals from the affected ear. Those will make you completely deaf in one ear, and the Gentamicin can also make you deaf if not done properly. Too much risk for too little reward based on the situation I am currently in.

I’ve only had two surgeries in my life. When I was a small child I had my tonsils removed. It was a common practice back then (1973) for children having extreme allergic reaction and throat swelling. Most recently (2003) I had a procedure done that corrected a deviated septum and reduced the turbinates in the sinuses. Since allergies were so bad for me as a child, and allergies seemed to be a big trigger early on in the progression of my Meniere’s, it seemed like a logical step to see if fixing the breathing problems might not alleviate the Meniere’s symptoms. Sadly this has not turned out to be the case, but has apparently reduced my allergies and the number of sinus infections I have to suffer through.  I will never forget the first time I went swimming after the surgery and got water in my sinuses. Before the surgery it was a major struggle to get them to clear.  After the surgery I just tipped my head forward and the water ran out. “so that’s what working sinuses are like!” I exclaimed to the amusement of all present.

I have slight dizziness and disorientation almost constantly.  Disorientation brings on the brain fog on bad days, more pronounced after vertigo attacks. There are good days and bad days, but turning corners always carries the risk of colliding with objects I know are there and thought I would miss. The last symptom that I can tie to Meniere’s is a seriously vicious migraine headache.  In 2014 I was getting them about every 4 days, but a trip to the GP where I finally admitted the headaches were that frequent got me a daily script that has reduced the migraines to something I only enjoy during allergy seasons.

This is how I treat my Meniere’s disease.  Behaviorally, I avoid stress and allergens as often as I can. That means getting enough sleep first and foremost, since stress is directly related to the amount of sleep that you get versus how much you need. This is one of the hardest things to do in this culture, the US culture, justify getting a full night’s sleep.  Never mind a full night, I frequently can and do sleep for longer than 12 hours. I have found that 8 hours is more than enough if I can get them from 10 pm to 6 am, but the problem is getting to bed before midnight (as I’m sure most people will agree) and staying asleep for the full 8 hours.

Probably the single most beneficial thing I’ve done aside from sleeping more is to stop sleeping on a flat surface. I tried mounding pillows under my back on the suggestion of a touring musician who is a fellow sufferer, and that seemed to help. Then I tried wedging up the head of the bed up by about 6 inches, and that seemed to produce even better results. Unfortunately the wife hates the heads-up sleep position, so I begged an adjustable bed from a friend who had one in storage. I’ve been sleeping on that bed ever since, and I credit it with reducing most of the inner-ear pressure that I used to experience while trying to sleep.  If you don’t believe me, try it.  It really can help.

I walk everyday, or as close to everyday as I can manage, regular exercise (sadly) being another facet of stress reduction. Walking puts me afoul of my allergies for almost anything that grows, so I have to do some of it indoors on a treadmill. I prefer to be outside whenever I can manage it, so allergy medications are something I tend to take frequently.

There doesn’t appear to be any real treatments for the tinnitus. Mostly it is a matter of enduring the constant sound which does contribute to the brain fog, or masking the sound with other sounds. I find Rainymood, suggested by a redditer, works best for days when the tinnitus is incredibly annoying. Most other days I just endure the constant barrage. You can train yourself to ignore the sounds using various methods that you may or may not find useful. I’ve never stumbled across anything that worked for me, and there have been many promises made over the years that remain unfulfilled. I have the least to say about tinnitus, I think, because hearing loss and the accompanying tinnitus stole my enjoyment of music from me. When the songs stopped sounding good in my ears, I simply stopped listening to them. I think that has been one of the hardest things to cope with, almost as hard as not being able to work.

Dietary habits are a frequent topic with Menierians. I was already avoiding salt because of a hypertension diagnosis, and my hypertension medication contains a diuretic which was the first medication suggested by my ENT. Salt can increase blood pressure which increases stress. Stress is a major trigger. Caffeine is something I try to avoid because it disturbs my sleep, not just because it makes me dizzy. Caffeine can also increase stress. Anything dietary that causes stress can cause Meniere’s symptoms, so just avoiding things you think cause you stress can make your symptoms seem less noticeable. Don’t rock the boat and it won’t capsize. Easier said than done.

Medication. On top of the diuretic/hypertension medication mentioned previously, I take a variety of additional drugs both prescription and over the counter. If the affected ear is bothering me and I don’t have vertigo yet, I take Pseudoephedrine/Guaifenesin, this combination is usually effective at reducing ear pressure. If my allergies are acting up, I add Fexofenadine (most people prefer Loratadine. I find it dries the sinuses too much unless it is ragweed season; then the extra drying stops me from drowning) If the migraine is kicking in, I take prescription doses of Ibuprofen and Acetaminophen together. A daily prescription for Amitriptyline has removed my need of other painkillers almost completely in the last few years. I only take them now on the really bad days, days when I’ve done something stupid like carry 40 lbs. of dog food or gone for a walk on a high allergy day.

Vertigo treatment started with Meclizine (Dramamine) which is what I took in 2003 when I was first diagnosed. A few years ago I heard about Serc or Betahistine from Menierians in online forums. This is a drug commonly prescribed for dizziness and specifically prescribed for Meniere’s in the UK and a good portion of Europe. I was initially dubious that the drug would have any effect since it had been trialed in the US previously and found to be no better than placebo at preventing Meniere’s symptoms.

This summer (2017) my ENT’s office took on a new doctor and I was referred to her for my annual Meniere’s symptom review and prescription renewal. She suggested a trial of Betahistine during my first consultation with her. Not being one to reject any suggested treatment out of hand, a treatment that wasn’t damaging or potentially life threatening, I decided to give it a try. Betahistine is not available in the US from your ordinary pharmacy. It has to be compounded and consequently isn’t on the average health insurance formulary.  This makes it more expensive to take and harder to get, but at least it was legal for me to try it. As of this writing I have completed the 90 day trial of the drug and while I can’t say it is doing everything I hoped for, it is doing something. Whatever it’s doing, it’s doing it enough that I agreed to continue taking it daily for the next year, upping the frequency to three times a day. My head seems clearer, my concentration sharper. The tinnitus continues unabated but the ear pressure is less noticeable. I still get occasional bouts of vertigo but they seem to last for shorter durations.

This is a key point in understanding Meniere’s and its treatment; nearly all the procedures recommended by doctors are designed to stop the vertigo. The vertigo is thought to originate within the labyrinth of the inner ear, so most treatments are centered around that part of the body. From the most drastic to the least invasive, nearly all of the surgical treatments silence the affected ear, permanently. Some of the less invasive will leave you with some hearing in the ear, but their efficacy is highly questionable.

Reading through the treatment page on Meniere’s Disease Information Center website, it becomes very clear that most sufferers will try anything to stop the vertigo.  If you’ve ever been afflicted with a Drop Attack from rotational vertigo, and can imagine that sensation continuing for hours and days at a time, you would understand why sufferers are willing to try anything to make it stop.

If I have vertigo and it has already made me nauseous, I take Promethazine. If the vertigo doesn’t respond to the Meclizine (Which happens. Frequently) then I take Valium to let me sleep or Xanax to relieve the anxiety of the attack, which generally leads to sleep (all three require prescriptions in the US) Unconsciousness is a mercy when consciousness is a never-ending torment of spinning. Spinning without end.

Flying is the fun part. I have to be medicated to fly. I used to take Promethazine and Valium, but Xanax alone is sometimes enough of a treatment to keep the vertigo at bay.  I much prefer the Xanax because I don’t sleep, but I have to have supervision because it makes me a bit fearless, while not actually giving me better balance. Just an accident waiting to happen then, but at least I can sit through the flight without freaking out at every movement, getting queasy and vertiginous.

I have another secret weapon for managing flying. Cinnamon chewing gum.  I always travel with a pack of gum. I have always chewed gum while flying since I first went up in a Cessna with my dad as a child. If your ears bother you because of pressure, chew gum.  Far more useful than earplugs.

A word of caution. I make a lot of drug recommendations in this blog entry.  Having suggested drugs for various treatments, I really should also offer the following caution; these drugs all have different effects for different people, and this fact can not be overstressed. These medicines work for me and I’m thankful that they do. Treating Meniere’s means finding your triggers and then doing your best to avoid them. My triggers seem to be stress or allergy related. It will be a trial and error process finding what will work for you. Here’s hoping it takes less than a decade for you to find your feet again. It will happen, it just takes time. If you find that a drug I suggest doesn’t work for you, try a different one. Keep working at it till you find a solution that works for you and then stick to it. The important part is to not give up.

If you are reading this because you to have Meniere’s, then I am truly sorry.  I have often said that I wouldn’t wish this disease on my worst enemy.  Being disabled has made me question many of my assumptions.  Most of the things that I thought were real as a healthy person turned out to be delusion once I became chronically ill. Problems that I thought were paramount now seem trivial. Services I complained about paying for are now essential. Seeing life from this viewpoint has made me a better person, but there has to be easier ways of getting this insight. Ways that don’t rob you of hope, of purpose. What can feel like forever, from the inside.

I miss architecture and drafting nearly every day. Those were my purposes in life prior to this debilitating disease. More than a decade later, I still have dreams involving architecture. Admittedly, the last dream involved all my drafting tools being ruined because they had been piled in a trailer for ten years, but still the dreams persist. I have them almost nightly, reliving events from my productive past only to wake up to the reality I face now.

So if you are a fellow sufferer, please know you have my utmost support.  We all need people we can rely on now, because there are times when we really are helpless and won’t survive without them. While that has always been true of everybody, most people go through their lives never admitting this fact. Cherish those around you who are there when you need them. That is what it truly means to be human.

Edit history. This is a periodically updated post, completely different from most of the other posts on this blog. The content of this post will change as my experiences and treatment change. As of the addition of this, the edit history heading, I have made several periodic updates, most of those have been due to my personal dissatisfaction with cludgy wording, or meanings that I don’t think I made clear in my first attempt at documenting symptoms and treatment. I added the section about chewing gum. I added the section noting there were no known effective treatments for tinnitus. I think those were the most intensive change prior to this edit. However, this edit will alter several points of the post so I deemed it prudent to document what I’m about to change.

Today, August 6th, 2017.  I am doing my first major alteration of the content and intent of this post. I’m adding a few headers to separate information. I added the recollection of my first vertigo spell, having dredged that memory up from somewhere. I can still vividly picture the inside of that Abilene apartment, almost like a nightmare. Tinnitus stole my music was added. I have revised the section on dietary habits radically. I poo-pooed the obsession most Menierians have about watching their diets in the original version. There are scientifically valid reasons to restrict your diet, and I was wrong to discount this fact, so I altered the text to fit my current understanding. I am adding some verbiage about Betahistine (Serc) since I am now taking that drug and finding it effective. I changed Phenergan to Promethazine because that is the name the reference site uses. A general reorganization of information into coherent sections was a part of this edit as well as the specific changes mentioned. I hope the content is easier to absorb than it was before. Feedback welcome!