This was an entry on the Menieres.org Journals page, which has been down for awhile now. I thought I would roll this (and other musings) into the blog I keep meaning to create, and finally have created. I’ve appended the historical entry with my current musings on Meniere’s and life. Been hanging out on the forums a lot lately, guess that brings it to the forefront. Anyway, this is ‘my’ Meniere’s.
It was the muffling of sound that I noticed first, like I had a blown speaker in my head instead of in my car. This was in 1987 [actually, after further musing, I’ve come to the conclusion that my first vertigo attack was in 1983-4, when I lived in Abilene. I just didn’t know what was happening to me then, and it didn’t repeat until 1987] I was in my late 20’s and still deeply into music. If it wasn’t the constant ringing, then it was the echo chamber effect, a distortion of sound that occasionally made conversation difficult. Allergies, I thought. Allergies that are making my ears give me problems. I tried everything to get rid of the ‘pressure’ in my ears. The sauna worked best, at that time I had access to one. I would sit in that little wooden box until I couldn’t stand it anymore, but the ringing and distortion would be temporarily eased by it. I also had some luck with hot showers, but that treatment brought on my first few vertigo attacks, I just never understood what they were.
Then I thought I was having a recurrence of ear infections related to allergies that had plagued me as a child. This was what I told the doctors that I would go see on a seasonal basis, and they obliged me by prescribing me allergy medicine; or antibiotics if I happened to be extra convincing that day. I popped antihistamines trying to relieve allergic reactions (sort of the right track, I guess) I’ve tried nearly every one on the market, none of which really had or still have any effect. I finally settled on Pseudoephedrine and Guafenesin, which I took nearly everyday for several weeks at a stretch, They seemed to be the only things that worked predictably every spring and fall when my ears would start acting up.
In retrospect, it seems odd that I just stumbled across what is a common treatment for the disease I now have been diagnosed with, Meniere’s. I probably would not know what it was now if I had not been diagnosed with high blood pressure a few years ago. One of the things that they tell you when you go on the blood pressure medication is “do not take Decongestants, especially Pseudophed”. So I quit, even though I knew the fall and spring season would be hell.
They were. In fact, it was a hell I had never even come close to experiencing before. I couldn’t make the world hold still, sometimes for several days. The disorientation was bad enough, but the vertigo was disabling; and it just got worse. The attacks would hit me from out of nowhere. I would just have had a good meal, or I might just be holding my head the wrong way and the world would just take off spinning. I discovered Bonine about that time and I still carry Meclizine everywhere with me. I went to see my first ENT about that time as well, a totally useless individual who ran rather expensive tests on me, and then told me there was nothing wrong with me. Great, just the answer I wanted.
I love the Internet. If you want to know something, and can find your way to a search engine, you can find what you are looking for. The internet is quiet if you want it to be, too. Nothing that you need listen to other than the ringing in the ears. So I searched. One condition kept popping up that matched my symptoms. That couldn’t be it though, surely. My wife thought it was the blood pressure medication, but through experimentation we determined that there was no real correlation between the two.
Fall rolled around again, and with it the serious vertigo attacks (This was 2002) attacks that had gotten so bad that I occasionally would end up passing out next to the toilet on the bathroom floor, like some teenage kid who didn’t know what his alcohol limits ought to be. I decided to go to a different ENT (Ear Nose & Throat, for the uninitiated) one that a friend had recommended. I had determined that I was just going to discuss symptoms this time, and let him confirm what my suspicions were. After running through virtually the same tests that I had been through before, he asked me “have you ever heard of Meniere’s disease?” OK, so I was right then.
I went through some sinus surgery over Christmas. Corrected a deviated septum, and they cleaned out the sinus passages to see if that reduced my allergic reactions. It seems to have worked somewhat, although the disorientation still bothers me on occasion, the serious vertigo attacks are becoming fewer now. The ringing and the pressure remain, however. I could go see a neurologist, I have a card for one currently in my wallet. It’s something I’m thinking about. I think I’ll go to an allergist first, I’m certain that if I can just get the allergies in check, the other symptoms will fade without the need for further surgery. Maybe it’s just a dream, however.
Anyway, I’m turning 40 this year. Still don’t know where the time went. Music is harder to listen to now, but I still plug in the odd disk and give it a listen over the tinnitis. I have to turn my right ear to conversations now, the left ear is nearly useless. I occasionally wish it would just stop working altogether, I would probably hear better then. I wonder if Van Gogh was a fellow sufferer sometimes. I could imagine doing something nearly as nutty as he did, just to get the ringing to stop.
I’ve been meaning to write this for some time now. I hate having to rely on somebody else when I ‘should be’ able to get by on my own. Needing to write this down and post it felt similar to me, needing somebody to know what I was going through, so I didn’t do it. But I sat down tonight and WANTED to write this, so I did.
I hope somebody out there gets something positive from this. You aren’t alone any more than I am. I have friends and family that are looking out for me (the wife seems to be too protective sometimes) so I try not to worry. But I wish it had been ‘just an ear infection’. I wouldn’t wish this disease on anybody.
Today, October 26th, 2005 –
Created this Blog. Pretty good day today. I don’t know why I think that. The Wife lost her job last night. We did oversleep this morning. I slept with my good ear against the pillow and was consequently unable to hear the alarm this morning. The children got off to school OK, the Wife is back in bed asleep, and I’m up here (as usual) in front of the square headed girlfriend, typing my little fingers off. At least the world isn’t spinning today.
Couldn’t say that yesterday. Yesterday I couldn’t stand up without nearly fainting each time from a “near vertigo attack” (the world snaps and starts to spin, but I focus on a single point until it goes away, or at least recedes) at least a full attack didn’t surface. Can’t say that for most of the rest of this year. Started out well enough. I had a job, I had an employer whom (I thought) understood my limitations, I had taken the time to explain Meniere’s to him, and what I thought set it off, and the fact that I might miss work, sometimes a couple of days, and that I would do my best to make it up. I’d been there about 9 months in February when he called me into his office to inform me that he was letting me go because “I was sick too much”. (NEWS FLASH, I think I know this!) This was the second employer to use this reason in letting me go, in about as many years. I decided that I would not seek another full time employment position, and would instead take on the odd contract job that I might be able to land. Unfortunately there hasn’t been enough of that work.
Not that I’ve felt well enough to pursue much work this year. I have had more attacks this year than any year since I started keeping track. I was down with constant dizziness and occasional vertigo for 8 weeks this summer, which is something that has never happened. The few times that I have worked have been restricted by an attack at some point during the term of the contract. That’s not good. When someone contracts time sensitive work to you, they don’t want to hear about medical problems.
So here I am. Holidays approaching, no work in sight, wife not working at the moment, retirement money almost gone. But, I got up today and wasn’t dizzy. I’m going to go walk the dogs and enjoy the sunshine. If I come back and I’m still not dizzy, life is good. We’ll see.
“What lies behind us and what lies before us are small matters compared to what lies within us.”Henry S. Haskins
Loneliness is the worst part of suffering from Meniere’s. I generally don’t need much attention, and even I find myself craving conversation. I might go a whole month with just the family and suddenly the urge to run out and talk to people becomes almost overwhelming.
This is understandable. As much as we like to pretend we are inviolate individuals, we are actually amalgams, a sampling of all the influences we are exposed to each day. Being alone too much is destructive to the human animal. Go out and find people you can trust, if your family isn’t supportive or attentive, and spend time in their presence. Don’t wither and die alone, please.
I mentioned Menieres.org at the beginning of this post. That site and it’s participants come and go, year to year. It isn’t the only resource out there, so don’t despair if there are no quick answers for you there. Here are a few other resources I’ve found useful.
Facebook.com/Meniere’s Resources which is associated with menieresresources.org I’ve been aware of this group for awhile and only recently found them on Facebook. I got sideways with a moderator in that group and so we’re no longer on speaking terms. Probably just as well. I’ve had enough chirpy, syrupy optimism to last me for awhile now. However if that is your thing, drop by and say hi. Nothing but love, as the saying goes.
Facebook is where everything seems to happen these days, so it is no coincidence that there is more than one group for Meniere’s there. The other one I frequent is called Spin Cycle. Recently (June 2018 now) I found a few other groups on Facebook. Meniere’s Worldwide has posts several times a day to it’s board. Menieres Disease – Bilateral Battlers is a group I joined after going bilateral (Meniere’s in both ears) the day my mom died (February 9th, 2018) It has been a rough year for me.
Reddit.com/Meniere’s – On a whim I decided to see if Reddit had a Meniere’s group and they did. Not a lot of posts there, but if you post a message you’ll generally get an answer within a day.
There is also a G+ group for Meniere’s , but there isn’t much traffic on it that I’ve noticed. G+ itself will shortly no longer exist.
I do have a treatment regimen that I follow. I detail it here. If you want to do your own research and decide what is right for you, I highly recommend the Meniere’s Disease Information Center. Don’t let their critical writing style put you off, they’re just trying to adhere to a proper level of skepticism when it comes to treatment claims. Everyone can profit from applying a little critical thinking to the problems they face. The site has gone down now and is only available as an archive on the WaybackMachine. Give them a donation if you find yourself relying on their archives more than once.
A friend and fellow blogger has put together a decent list of resources here. Drop by and say HI! to him as well.
I describe how I got disability here. If you suffer from frequent vertigo and are unable to work full time on a regular basis as I was, then disability is just about your only option in the US.
Me, Architecture and Meniere’s Disease stands as record of how I came to suffer so many symptoms while pursuing my dreams of an architectural career. A dream which has sadly come to an end. I keep hoping I’ll find another pursuit, or find a way to get back into architecture, but productivity and concentration remain limited and elusive.