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 started in 1984 while I was living in Abilene, Texas. I didn’t know what was happening to me. I was in my 20’s and 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 that I felt in my ears, especially the left one.
That first Spring, after a disastrous series of relationships ended and I lost my first architecture job, the reason I moved to Abilene in the first place, I was out driving around in my car listening to music, and I noticed that there was a buzzing in my left ear. I didn’t hear much of anything when the music was turned off, but when the music was on, the sound was wrong. High volume or low volume, the music just didn’t sound right. This went on for a few days and it was about to drive me nuts. Just enough pressure behind the eardrum to be noticeable, and just enough distortion in the music to be annoying.
I couldn’t clear the pressure by working the temporomandibular joint as I had done in the past when atmospheric pressure changes created a similar feeling behind the ears, so I got undressed and sat in the tub with the shower pouring the hottest water I could stand straight down on my upraised left ear. I figured I’d use the heat like a heating pad to drive the infection or fluid down out of that side of my head. I let the shower drum on that side of my head for about an hour or so or at least until the hot water ran out. I did this two or three days in a row. I know it was more than once because I recall my roommate getting pissed at me for using up all the hot water.
The last time I tried this technique, I finally got the pressure in the ear to release. When that pressure came off it was like a hammer hit me on the side of my head. I was horizontal in the tub with the water hitting me in the face when I came to. I guess I passed out for minute. The tub was spinning around me. I had to feel my way up to the shower handles to turn the water off, and then I slithered out of the tub on my belly and then managed to get up on my hands and knees. Walking was simply not possible.
I crawled to my bed and leveraged myself into it, hoping the vertigo would pass. I slept for at least a day after that event, and the roommate wanted me gone not too long after that. There was clearly something wrong with me, in his mind, and he wanted no part of it. He told me as much at the time. The garishness of the apartment still flashes in my mind as I think back to that place in Abilene. Freaky 70’s design colors.
When the Wife and I moved into the Willow Run Apartments in 1986-7 after they completed construction (from plans that I drew for P.V. McMinn) in San Angelo, the apartment complex’s gym had a sauna and a hot tub as well as an indoor-outdoor swimming pool. The sauna worked best at relieving the pressure in my left ear. 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 thought that maybe 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 Guaifenesin, which I took nearly every day 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 Meclizine about that time and I carried it everywhere with me for at least a year. I went to see my first ENT (ear, nose & throat doctor) 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. The 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 in 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, 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 that year. 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. I 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 tinnitus. 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 article. So I wrote it.
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
I created this blog today. It’s a pretty good day. 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 okay, 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.
I 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. It 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” (his exact words) This was the second employer to use this reason in letting me go in just 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
This was an entry on Menieres.org Journals, a set of pages that have been down for several years. I thought I would take the thoughts from there and combine them with other musings and make an article for the blog that I keep meaning to create. As you can see I have finally created it with this entry. This was my Meniere’s story up to the time of the creation of the blog. I reworked the first couple of paragraphs, altering it from the text that existed on my journal page, so as to incorporate the story of the first vertigo spell. I have finally fleshed it out sufficiently to do the story justice. I wanted to separate that experience from the later experiences with the sauna and the doctors, which required the re-editing. They are my memories, I will do my best to record them accurately.
Documenting my symptoms, writing about Meniere’s and the other trivia of a disabled person’s life, has taught me how to write over the years since I started writing this blog. You spend a lot of time alone when you have a chronic illness. People always ask “how are you” as a greeting, and when you are chronically ill (and if you are honest) the resultant monologue can sound like an endless litany of complaint. So you don’t go out much. You spend a lot of time alone with your thoughts. Which is why I decided to start writing them down, now that technology has shown me how to bypass my first disability:
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 to talk to and then suddenly the urge to run out and talk to people becomes almost overwhelming. This is understandable. As much as we like to pretend to ourselves that we are inviolate individuals, we are actually amalgams. We are a sampling of all the influences we are exposed to each and every 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 to your needs, and spend time in those people’s presence. Please don’t wither and die alone.
I went bilateral (Meniere’s in both ears) the day my mom died. That was the roughest year for Meniere’s and me since I lost my last job in 2005. That is, until the year we all lost to COVID-19. I don’t need to tell any of you about that. It is all over the later parts of this blog if it isn’t all over the news still.
I do have a treatment regimen that I follow:
If you want to do your own research and decide what is right for you, I used to recommend the Meniere’s Disease Information Center. Unfortunately the site is only available as an archive on the WaybackMachine now. You can browse the content on the archive, but it will get more and more dated as the years go by. There are precious few other places that I would send anyone to without a word of caution.
A friend and fellow blogger has put together a decent list of resources here. Drop by and say hi. I’ll let him stand by his own suggestions rather than offer any of my own aside from the treatment article that I revise pretty regularly and a list of the forums that I have contributed to in the past or continue to participate in:
- I mentioned Menieres.org already. 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 in the forums there, if they are still up.
- 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.
- 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. It’s 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. The other early Facebook group I frequented was called Spin Cycle, but I have left that one as well. Another difference of opinion.
- In June of 2018 I found Meniere’s Worldwide which runs on more of the freewheeling style that I can appreciate. Just scroll on by, as the moderators are fond of saying. Scroll on by if you don’t like what you see there.
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. This article:
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.
2 thoughts on “First entry – Life with Meniere’s”
Interesting that you say about high blood pressure and Menieres Disease Gingko has been shown to help blood flow and also aid in helping people with Meniere's Syndrome or Vertigo disorders.
Ginkgo, like so many other herbal supplements, has no real uses in medicine.
I've tried taking pretty much everything suggested at some point in my disability. None of it produced better results than a daily diuretic (part of the treatment for hypertension I'm already taking) and Pseudoephedrine/Guaifenesin when the fluid pressure gets too painful in the ears.
You learn, after being offered enough snake oil, not to take other peoples word on the effectiveness of any remedy without research of your own.