Meniere’s – RAnt(hony)-ings

Beware the Woo: Nausea Relief Bands

Once upon a time there was a show that specialized in debunking the myths that surround us on a daily basis. That show was called Mythbusters. Unfortunately for those of us still trapped in the real world of today, Mythbusters only ran for 20 seasons and their last season was in 2016. The show ended the year where it seemed we needed mythbusting the most and the real world has only gotten more mythbegotten since 2016. Beware the Woo is a tribute to the science that was present in-between the explosions that were in pretty much every episode of Mythbusters.

The Wife handed me a set of flimsy little fabric sweatbands. On the insides of the bands there were these little plastic dimples. I just looked at her.

“Those go against the bottoms of your wrists.” She said. “They worked wonders for me when I was pregnant. Give them a try, please? It can’t hurt.”

She was right. It couldn’t hurt. Nothing else had worked for me so far in the vertiginous hellhole that had opened up and threatened to consume me since my Meniere’s symptoms had accelerated and started to occur almost weekly. So I placed the little plastic bumps in what I thought was the right place on my wrist and wore the glorified sweatbands around for weeks. It felt like weeks, at least.

The vertigo, nausea and vomiting happened anyway so I threw them away in disgust and went on to the next thing, which was probably dosing myself with meclizine if I remember my timeline correctly. Who can say? I really can’t say for certain because I had forgotten everything about those silly little wristbands until this post appeared on the subreddit a few days ago:

I was wondering if anyone else had tried a ReliefBand yet and what their experiences were.
r/Menieres

I didn’t understand the reference at first. I though they meant Sea-Bands, which was the sweatband with the plastic pimple on the inside. So I riffed on that subject for a bit before I even googled ReliefBand and discovered that it was basically a wrist-mounted TENS unit that sent electric shocks into the point on the wrist that the Sea-Bands just pressed on. A wrist-mounted TENS unit that costs a few hundred dollars. I would have sworn I’d never heard of them before. Then I googled a little further and I discovered that there was a Mythbuster’s episode on the subject:

youtube.com

…an episode where they not only tested the Sea-Bands but they tested a version of the ReliefBands and about a half-dozen other anti-nausea myths. The only thing that proved to work reliably was taking a ginger tablet when you feel nauseous. I drink a ginger beer when my stomach starts to give me trouble, so this result doesn’t surprise me. I probably picked up the idea of eating ginger for tummy troubles from watching this very episode and then forgot all about it.

In a nutshell the idea that you can quell nausea by poking the P6 spot on your wrist is quackery. There is no established (or establishable) mechanism for these bands to do anything at all, much less reduce nausea. The Sea-Bands that I was mistaking the ReliefBands for work on exactly the same (non)principle. The P6 spot is an acupuncture point:

This wrist acupoint is known by various names: the Nie-Guan point, pericardium 6 or, more commonly, P6. Look for the skin crease that denotes where your palm ends and your wrist begins, and go down the wrist two to three fingers’ width, and you will have found P6.
mcgill.ca/oss

…and acupuncture is a pre-scientific attempt to explain why people get sick by ascribing healing and or sickness causing powers to rivers and streams of Qi (Chi) energy that supposedly flows through the body, power that can be harnessed by doing an oriental version of bloodletting; now reformed into sticking needles into your body, although some practitioners will still practice a version of bloodletting in certain circumstances. (see cupping. –ed.) The premise that both these types of bands are supposed to work on is the same one as the acupuncture point they utilize. One type of band is just more expensive than the other and has electrical stimulation to make it seem more effective.

…On the other hand if you convince yourself that these bands work and that stops the symptoms then there is no reason not to keep using them. I mean, you’ve already spent the money, might as well get your use out of the device. Half of the problem of dealing with symptoms is just reassuring yourself that you are dealing with them, even if the thing you are doing is just reassuring yourself. There is no arguing with what works. However, if all you are doing is tricking yourself into a feeling of non-nauseous normalcy, you could also trick yourself with a free piece of string tied around the same place on your wrist. Or any old bangle that creates the sensation that you associate with preventing the nausea.

The Wife says I’m an asshole on this subject. She still swears the Sea-Bands worked for her. She swore that even after watching the same Mythbusters episode that I now remember watching with her and the children; although she did question the wisdom of a wrist-mounted TENS unit when I brought up the subject of the ReliefBand. Then and now. I’m certainly not going to buy one.

The price of these woo devices varies based on the misery of the group being pitched to and their relative level of wealth. Sports teams pay a fortune for the silly tape they put on players and that is every bit the same kind of snake oil that all of these bands are. Magic magnetic or electrical surface contact that alters the perception and makes the person who is being treated believe that something in them has altered. Which is, as I already observed, half the problem.

If there is any doubt remaining on this subject after the Mythbusters deft analysis is over, a Pubmed article should put it to rest:

Neither band nor placebo prevented the development of motion sickness, regardless of whether the bands were used correctly or incorrectly.
nih.gov

Save your money for the ginger beer. You’ll enjoy that more anyway.

Valsalva Maneuver

Today I learned that the way that I alleviate the feeling of pressure behind my eardrum has a name. That name is the Valsalva maneuver. I was taught this maneuver by a swim coach when I started complaining about sinus pressure after a swimming competition when I was about seven years old. You shouldn’t attempt to do the maneuver while standing. So, sitting or laying down, breath in. Pinch your nose close. Now bear down, applying moderate pressure in your head, chest and stomach until the ears pop and the sinuses inflate, or about 15 seconds. Then relax and breath out. Remain seated for a few minutes.

The reasons why I thought this might help with the symptoms that I was suffering from at the time (ear pressure, tinnitus, sound distortion) are both simple and complex. Simple, in that I thought I was having the same kinds of sinus and ear problems that I had back in the days when I was on the swim team and this was how I dealt with them then. Complex in that the air in my head felt stale. It sounds weird to say it, but it’s true. The air felt stale, and pressing air up into my head, my sinuses and my ears, seemed to make the stale air feeling go away. The ear pressure would change, the brief euphoria would pass, and I would get on with my increasingly more confusing day.

The maneuver never made the pressure completely go away, which is why I ended up giving myself vertigo in the shower that first Spring (1984ish) and also why I ended up going through all the allergy medications in the pharmacy in an attempt to make what I was sure was an allergy go away.

Sudafed Non-drying Sinus

I only learned the name of this thing that I had done since I was a child because the German version of the Wikipedia page addressing endolymphatic or cochlear hydrops recommends using the Valsalva maneuver to reduce the chances that you might end up with vertigo later in life. Doctors told me for years that this thing that I had done to equalize pressure after swimming or being up in a plane had no effect on the early symptoms of Meniere’s and that it was hazardous to even attempt it. Because of this advice I stopped doing it regularly.

Little did I know that apparently the Valsalva is the thing to do in Germany. Forcing air into the middle ear should have no effect on the fluids of the inner ear; and yet for some reason, this appears to be suggested as a treatment for early Meniere’s symptoms.

YouTube – Vagus Nerve Hack | Valsalva Maneuver (Originally I pointed to Doc Skinner’s video. That was a power lifting video and they don’t plug their noses for their version of this maneuver. – ed.)

Just watching the video makes me think trying this could trigger vertigo, and I have gotten vertigo when straining to get the bowels working (I’ve always wondered what properly working bowels are like. I’ve never had those) which is described as being a similar effort in several of the different videos that I’ve watched trying to find an authority on the subject.

Meniere’s disease is an inner ear problem. Cochlear hydrops is an inner ear problem. The German Wikipedia page refers to the disease as a middle ear problem, which it isn’t. Forcing air into the middle ear can alleviate eustachian tube blockage, but you can also rupture the eardrum doing that so it can be hazardous to perform the Valsalva. This is not to mention the various heart conditions that can be made worse by doing this maneuver, brain aneurism from putting additional pressure in your head, etcetera, etcetera, ad nauseum. There are many, many good reasons not to do this procedure.

There are also many good reasons to do this procedure. Flying jet aircraft and needing to stay conscious. Deep sea diving and needing to equalize pressure in your ears. Power lifting requires it to lift those massive weights that they lift. What I don’t know is whether this will do anything for inner ear health, which is what would make doing it worth the hazard.

You can also pass out if you are standing up, so don’t even attempt a Valsalva Maneuver unless sitting down!

Hydrops is a fluid imbalance of the inner ear. As far as I know there is no way to regulate that fluid pressure using the Valsalva. There is no mention of Valsalva on the English version of both the Ménière’s disease Wikipedia page and the Cochlear hydrops page. It isn’t mentioned on the MDIC archive. It can be prescribed for atrial fibrillation, so it’s not like the English-speaking world is unaware of the maneuver, it just isn’t a thing that is mentioned in relation to treatment of Meneire’s disease anywhere other than that German Wikipedia page. Why is the German version so different?

Reading the English translation of the German is liable to turn into a drinking game (snail hole versus oval window, for example) If I could drink, that is. I can’t so I might as well be serious here. In Germany it is understood that 10% of the people who have cochlear hydrops develop Meniere’s disease later in life. In the English speaking world there doesn’t seem to be a distinction drawn between people who have the beginning stages of endolymphatic hydrops and those people who have full-blown Meniere’s disease. If you have hydrops they seem to be just diagnosing it as Meniere’s even if all the symptoms of Meniere’s disease are not present yet.

It appears that the belief that the Valsalva or the Frenzel maneuver (Working the tongue in the back of the throat can produce a similar pressure change in the middle ear. It is harder to do but can be done with less risk.) can improve the health of the inner ear by introducing oxygen-rich blood and oxygen bearing fresh air to the oxygen-starved inner ear. I don’t know if this is true or not and I lack the professional knowledge to determine if it is even plausible or not. There was a very small study conducted in Germany:

A total of 12 patients (26%) had symptoms of vertigo, but only 4 patients (9%) developed the typical signs of full-blown Meniere’s disease with the typical inner-ear rotational vertigo over the course of 10 years. 6 of the 12 patients with vertigo (13%) suffered from psychogenic vertigo. Another patient (1%) had benign and treatable positional vertigo, and another (1%) had undergone surgery for acoustic neuroma and had postoperative gait unsteadiness.
springermedizin.de

Those results look promising, but the study isn’t large enough to be statistically significant and should be duplicated several more times before it could be ruled as reflecting something approaching a true finding.

This little stroll through alternative medical treatments for chronic illness has taught me a whole bunch of names for things that I didn’t know had names, whether or not it has informed me of valid treatments for my chronic illness. I’m going to blame my ignorance on the fact that I don’t speak German, don’t fly jet aircraft, don’t deep-sea dive or power lift. Yeah. That’s my excuse and I’m sticking with it. I sometimes inhale across the vocal cords (I think that’s what I’m doing) causing a vibration in the back of the throat that can sometimes work loose blockages in the eustachian tubes, too. Does that have a name, I wonder? I mean, other than the reaction of “gross!” or “that’s disgusting!” that making the noise generally produces. Probably not.

Human Barometer

This study provides the strongest evidence to date that changes in atmospheric pressure and humidity are associated with symptom exacerbation in MD.
Otology & Neurotology

A hat/tip is due to the blog Meniere’s and Me for bringing this finding to my attention. The Wife has called me her human barometer since I was first diagnosed with Meniere’s. I try to laugh with her when she says it.

This was first published on August 30, 2019. I’m going to try to remember to move this post up when the conditions reoccur. We’ll see how that works out. The next time I thought to do this was March 17, 2022. It definitely wasn’t the next time it happened, it’s just the next time that it’s been quite this bad:

barometricpressure.app – Austin – March 17, 2022

November 2022 – The month started out troublesome from a weather perspective and stayed troublesome all the way through the beginning of December. There was the sudden cold spike, very unusual for Texas at this time of year (the Fall colors are great, though. Almost never see those) followed by nearly a month of blustery, cool, wet weather. As I sit here typing on December 3rd there is fog outside my window, the second or third day of fog in Austin. Weird weather for almost a month.

When I went to check the barometer app, that familiar dip pattern is visible over the last three days. It’s been like that, off and on, all through the last month. There’s been a few good days here and there, but all in all I pretty much just sat the entire month out.

Reddit

Histamines & Allergies

I’ve been plagued by sinus infections for most of my life. My long struggle with these upper respiratory infections is what masked the symptoms of Menieres for me for many years. My first vertigo attack was triggered by my aggressive attempts to clear what I just knew had to be an ear infection from my head by running water into the ear that was giving me pain, the ear that felt like it was a full balloon of water about to burst inside my head.

I didn’t know what part of my head had an infection in it, I only knew that the pain was always in the left ear. When I would go in to see doctors they would either discover that I had a sinus infection, or they would give me antibiotics because I insisted on having them when the symptoms would occur. Later on, when I would insist it was an ear infection, the doctors could never find evidence of an ear infection.

I eventually fell in love with:

Sudafed Non-drying Sinus

Until the insane war on drugs took away my favorite allergy treatment medicine, that is. The federal and state governments know exactly how much pseudoephedrine I still take because they make me sign for it and track my usage every time I buy more. Guaifenesin I can buy by the truckload. When it comes to pseudo I have to count pills and make each one count. Forget ever seeing my beloved green gelcaps again.

As to how I discovered I had other serious health problems? A funny thing happened on the way to the chiropractor one afternoon. Caught in traffic one hot summer’s day. Livid at the delays and the time away from my beloved architecture practice I finally screamed my way into the parking lot and stomped into the waiting room. The nurses tried calming me down at that point so they could check my blood pressure before starting the rituals of chiropractic quackery. Then they tried calming me down again and they tried checking the blood pressure again. Then they called someone else over to check it a third time. They couldn’t figure out how I hadn’t had a stroke already with blood pressure as high as the readings they were getting said I had. They wouldn’t even let me leave their office without taking something to bring the blood pressure down.

So it was goodbye pseudoephedrine for me. High blood pressure is deadly and pseudo can kick up your blood pressure. No more decongestants of any stripe, which made dealing with allergies and sinus infections into something akin to slow torture. This lead almost directly to my first attempt at surgical intervention.

I underwent septoplasty with turbinate reduction about five years after giving up my daily pseudo doses, right after the weekly vertigo attacks started. The thought at the time was that getting the sinuses to work properly would help with the allergies, and that would help with the vertigo. Sadly, it had little effect on the Meniere’s symptoms but it did ultimately solve many of my issues with breathing and chronic sinus infections.

Even after I had discovered that Meniere’s disease was a thing in 2003 I still thought that my allergies had to have something to do with the manifestation of my symptoms when and where they did. They seemed to correlate to a degree that simply defied any explanation that wouldn’t create a shared cause.

Meniere’s, as I’ve explained many times on this blog, is basically idiopathic endolymphatic hydrops; which means that it is a fluid imbalance in the labyrinth of the inner ear that cannot be explained by any known cause. One of the suspected causes is immunological disfunction, which is why I’m talking about Meniere’s at all in this article about treating allergies.

An allergic reaction produces an inflammation of the skin or other tissues of the body. It is caused by your immune system attacking an invader in your body that isn’t something that the immune system should waste it’s time on. Inflamed tissues swell, changing fluid pressures in the body as well as cutting off airways and doing other nasty things that make the sufferer’s life shorter and more miserable.

Betahistine has a histamine interaction that is not well understood and that is why it has an effect on Meniere’s symptoms for some sufferers, or so it is thought by people studying it. As the title of the post suggests, histamines are all tied up together in allergic reactions that I just barely understand myself.

reddit

Histamine is a chemical, known as a biogenic amine. It plays a role in several of the body’s major systems, including the immune, digestive, and neurological systems.

The body gets all the histamine it needs from its own cells, but histamine is also found in certain foods.
healthline.com

I only passed high school organic chemistry because there was a nerdy girl that I befriended in class who was willing to help me pass the class as long as I didn’t bring her grade down by screwing up the experiments. I did my best not to screw up her averages, and she managed to get me through that class. I still only barely understand what any of it meant.

I just know that I have allergic reactions to many things around me and that the Meniere’s treatment that has produced the most effect for me is a treatment that alters the bodies histamines in some way that works for me. That’s it. That’s all I know about it. I’ve had every test that I and my various doctors can think of that might point towards a cause for the symptoms I’ve suffered from for decades now. All of them have come up negative, which means I have the symptoms but not any of the known causes.

One of these days they will come up with a test for some other autoimmune-related ototoxic reaction for which there is a new treatment, and that test will be positive for me. When that happens I will have a name for what ails me and a cure for it too.

I often wonder these days, what might have happened with my hearing if I had started taking Betahistine twenty or forty years ago instead of just three years ago? Would my hearing be better? Would I still have a job? Would I still be the asshole I was back then? Hard to say.

I still take guaifenesin and Claritin on bad allergy days. Flonase and azelastine sprays in each nostril twice a day. (Those two are my latest allergy treatments) They seem to help with keeping the sinuses clear. I wear a mask outdoors even though masks annoy the hell out of me. I take Betahistine 3x16mg every day.

I also rinse my sinuses semi-regularly with a neti pot.

reddit

The saline rinse for your sinuses can be made at home. you don’t have to buy it pre-made and measured from the neti pot manufacturer.

To make your own saline, mix the following in a clean container:

1/2 to 1 teaspoon non-iodized salt, such as pickling or canning salt (iodized salt can irritate the nasal passages)

Pinch baking soda (added to prevent burning; you can increase the amount as needed)

1 cup warm water (distilled or previously boiled water)

Then, place the above mixture in a clean Neti pot or sinus rinse squeeze bottle, or draw up into a nasal bulb syringe. The most convenient way to perform a sinus rinse is in the shower, but may also be performed over a sink.
verywellhealth.com

Just don’t forget to shake the mixture. I’ve done that a few times. When the salt crystals hit your sinuses you will realize your mistake but then it is too late to prevent the burn.

The latest round of allergy tests altered my understanding of my allergies. I have always assumed I had seasonal allergies because there are clearly seasons with my allergic reactions. This appears to not be the case after all.

From what I currently understand, I do have allergies but they are year-round allergies that are exacerbated by the crap that gets in my borderline asthmatic lungs every Spring and Fall. Simply wearing a mask twenty-four hours a day will eliminate the seasonal appearance of my allergies. This has been roughly confirmed over the CoVID years through direct experience, much to my utter disgust. So the masks are here to stay for me.

It’s also CoVID that has underscored my belief that my core issue is immunological. Every vaccination that I get makes me sick. The pneumonia vaccines were just the start. The CoVID vaccines have all been multi-day pain/fever sessions that I gladly endure, just as I do for flu vaccines, gladly endure in exchange for not getting deadly infections of those viruses.

The first Shingrix vaccination made all my joints hurt for almost a week. The second one was a breeze by comparison, causing almost no pain but still causing fever, lethargy and borderline vertigo for a few days. Vertigo I get with almost every vaccination; whether this is stress related from worrying about the needle or is directly connected to the hacking of my immune system remains unclear.

What is clear is that my reactions are more severe than those experienced by most people given these shots. I really wish I knew why this happens, then I might know what causes Meniere’s for me.

Disabled by Disability Red Tape

I can relate to the lamentations of the disabled person in this podcast:

The Indicator from Planet Money – Jobs Friday: The problem with disability support – October 7, 2022

I spent nearly five years trying to get disability myself:

Getting Disability

1 in four people will have to go on disability support before retirement. That means of the four or five people who might be reading this right now, one or two of you will need to be on disability in the near future. As this blog is read more frequently by disabled persons, that number is probably even higher and many of the complaints aired in the above episode probably echo with their own experiences.

I quite literally could have died during the five year process it took to get disability and it would have done nothing to demonstrate the need for support that my family and I needed at the time. The amount of fraud in the system is miniscule and yet the harm that is caused to disabled people and their families by delaying disability payments can be demonstrated time and time again. It is a black mark on our country’s moral ledger that this harm continues.

Once you have qualified for disability it then becomes a constant irritant, this need to demonstrate a need for continued support as if chronic illness is a thing that you recover from, or that the lasting effects of years of illness would not in themselves merit some level of support from the government. Rather than being something that you had to demonstrate a need for, disability payments should be a benefit that is granted automatically to every person who is not working. Granted automatically so that loss of housing, food and security isn’t a thing that the newly unemployed person suffers from.

If there are shirkers living off those easy benefits then it’s a simple matter of getting those people the mental help they need to get back out of their houses and get back to work doing something. You won’t live long sitting around your house doing nothing. Twenty years of disability has proven this to me. The only thing that keeps me alive now is getting out and engaging with the world on a near-daily basis. Something that I’m not allowed to charge anything for if I want to keep my disability payments.

Universal basic income would solve this problem, but I don’t expect we’ll be seeing that anytime soon no matter how feasible it might seem to the economists who support it. In the meantime if you aren’t working, can’t work, then you shouldn’t be facing eviction and eventual starvation because of it. It just shouldn’t happen anywhere that calls itself civilized.

Worst Rotational Vertigo Experience

I had taken off early from work to go get my children from school. It had been a fairly hectic day and I was frazzled and the traffic was the usual Austin stop and go parking lot all the way across town to pick up my daughter from her school. Then I drove back across town through the same traffic to pick up my son from his day care.

We had all just gotten back in the car. I had strapped my son in the child seat, made sure my daughter was buckled into the passenger seat and gotten in the car myself. Visions of which kind of food we’d get on the way home were being discussed when the world came unstuck and started to spin around my head.

I had nothing to alleviate the rotational vertigo with me in the car. I really had no idea how to treat it other than to hug the toilet and throw up until it passed. I couldn’t do either of those things because we were miles away from home. I didn’t have a cellphone at the time because we couldn’t afford one. The school was closed and the teachers had all gone home.

So we waited. It was summer in Texas so we sat there with the engine running in the car and the air conditioner blowing full blast on my face while I stared fixedly at a screw head in the interior finish of my car. This went on for about two hours.

After that time, with little let up in the vertigo and no convenient police cars to flag down, I got my daughter to play lookout for me. I would creep forward to an intersection and wait for her to tell me it was clear. Luckily there was little traffic on the side roads between where we were and where the house was, so I just went block by block until we got back to the house, where I promptly went to the bathroom and started throwing up.

A friend bought a cellphone for me the next day and demanded I allow her to pay for it. I started carrying meclizine around with me. When that proved to not be enough I got valium and promethazine and had to use them and the cellphone pretty regularly to keep the nausea to a minimum and to call people to get me home. Get my children home. Then I stopped working and things got a lot easier to deal with even if paying for them got quite a bit harder.

I’ll never forget that day, though. How helpless I felt. How dreadfully wrong everything could have gone. It is probably one of those scarring events that keeps me from doing things to this day, and that day was about twenty years ago.

reddit

Tinnitus

That cat has tinnitus.

It’s pronounced TIN-ni-tus because it is persistent tones heard in the ear when no environmental sounds are present. It’s not pronounced tin-NYE-tus because, if it were, your tin would be inflamed.

Tin smelters (Or cats. -ed.) can have tin-NYE-tus. The rest of us have TIN-ni-tus. There are many different causes of the sounds we refer to as tinnitus:

Noise-induced hearing loss
Ear and sinus infections
Diseases of the heart or blood vessels
Ménière’s disease
Brain tumors
Hormonal changes in women
Thyroid abnormalities

Although we hear tinnitus in our ears, its source is really in the networks of brain cells (what scientists call neural circuits) that make sense of the sounds our ears hear. A way to think about tinnitus is that it often begins in the ear, but it continues in the brain.

Scientists still haven’t agreed upon what happens in the brain to create the illusion of sound when there is none. Some think that tinnitus is similar to chronic pain syndrome, in which the pain persists even after a wound or broken bone has healed.

Tinnitus could be the result of the brain’s neural circuits trying to adapt to the loss of sensory hair cells by turning up the sensitivity to sound. This would explain why some people with tinnitus are oversensitive to loud noise.

Tinnitus also could be the result of neural circuits thrown out of balance when damage in the inner ear changes signaling activity in the auditory cortex, the part of the brain that processes sound. Or it could be the result of abnormal interactions between neural circuits. The neural circuits involved in hearing aren’t solely dedicated to processing sound. They also communicate with other parts of the brain, such as the limbic region, which regulates mood and emotion.
nih.gov/tinnitus

The most likely reason for Meniere’s patients to suffer from tinnitus is damage to the mechanisms of the inner ear that transmit sound. Endolymph (the fluid in the inner ear itself) becomes pressurized (hydrops) and the pressure damages the nerve endings there. Consequently you get a ever-increasing sound footprint in your brain that you have to listen around in order to hear anything.

There is no known treatment for tinnitus. There are methods to train yourself to ignore it, and there are ways to masque it, but the ringing is something you learn to live with one way or another. People will try to sell you on treatments. My advice is to save your money.

The trick is to train yourself not to listen to the sounds the tinnitus makes. After as many years as I’ve suffered with this I think I can say pretty authoritatively that not listening to it, reducing it’s importance, even meditating on it to become one with it, is how to cope with it. I definitely don’t listen to it.

Rainymood or some other white noise generator works best when the tinnitus gets painful or impossible to ignore. I’m particularly fond of the sound of the warp engines from Star Trek the Next Generation. There are several multi hour versions of the sounds on YouTube.

reddit, reddit

My tinnitus is basically a ringing that seems to constantly vary in strength and pitch and be in varying tones simultaneously. It fluctuates from day to day, hour to hour. It is the sound of buzzing or ringing. I can hear my heartbeat in it. It seems to reflect environmental noise, so loud places are intolerable for long periods. Ear plugs are a godsend when hyperacusis sets in.

reddit

Hyperacusis

Hyperacusis is basically an audio migraine. All sounds, even quiet sounds, can be painful. Wearing earplugs is about the only way to deal with it successfully and ear plugs can aggravate other types of tinnitus. Hyperacusis can be so bad that the sound of your own breathing can set it off.

Hyperacusis should wind down like the more traditional migraine does. They don’t know what causes any of the things they call migraines, and that is the biggest problem with them. Some part of the brain is misinterpreting the signals that it’s receiving and you get audio problems, vision problems, skin sensitivity problems or vertigo.

I wonder what the more modern epilepsy treatments would do for it? In any case, I won’t be getting normal hearing aids if I ever end up needing them because I have a tendency to experience hyperacusis since developing Meniere’s and amplifying the sound in my ear is simply going to send me to my office to hide more frequently, not get me out among people more often.

Sudden Brief Unilateral Tapering Tinnitus (Otology & Neurotology)

SBUTTs are benign and common among most people. I’m still looking at the literature on the subject, but I see little to be concerned about in it even if it occurs frequently.

I get these at weird times. Possibly more frequently than I did before, but also possibly not. I haven’t noticed that they are linked to spells of vertigo or hearing loss myself, although the sudden spikes that disappear do make me worry about an attack. The worry is probably more of a concern than the SBUTT should be. Worry and street go hand in hand and stress is a major trigger.

reddit

American Tinnitus Association

Why Are My Ears Ringing?

If you run the slider up and down on this Tone Generator you can find which specific tones that you can or cannot hear. I get a distinct doppler effect as the tone pass through ranges that I can’t hear in one ear or the other. Bit of a freaky experience.

If you want to understand what the effects of hearing loss or tinnitus sounds like to others, hear-it.org has a list of sound files that approximates them. I can’t judge the accuracy since I can’t hear them normally anyway.

reddit

A hodgepodge of comments spliced together from numerous places over the span of a decade. Steven Novella inspired this being posted today with his pithy comment about the pronunciation of tinnitus in yesterday’s episode of the SGU. Since I mispronounce this word frequently myself, I decided to riff on the subject. Featured image.

Otologist, Neurotologist, Otolaryngologist, ENT

There is a lot of confusion about what doctor someone who thinks they have Meniere’s should see. I see this fight go on all the time and it is tiring to witness it happening over and over again, not to mention the wasted time and energy involved in multiple people arguing over and over about something that is easily proven by simply Googling the subject.

The specialist you want to see is called an Otolaryngologist. Most people call them ENTs which is short for “ear, nose and throat” doctor, what the different latin syllables that make up the word otolaryngology mean.

To make things even more confusing, there are specialists of that specialization. An Otologist is also an ENT that specializes in the outer and middle ear. A Neurotologist is an ENT that specializes in the middle and inner ear. Most neurotologists are surgeons who do things like cochlear implants but some of them have regular medical practices. It’s confusing, which is why people say “go see an ENT” and don’t elaborate further on the subject. Most of them don’t know the difference, either. They just know that they either like or dislike their ENT doctor and the experience that they’ve had.

Obviously you don’t want to go to someone who specializes in sleep disorders (probably also an otolaryngologist) or does cancer surgery in the throat (ditto) what you want is someone who works on the middle/inner ear if you’ve already been diagnosed with Meniere’s; and if you haven’t then the more general the generalized medical education the doctor has is probably fine as long as they are actually ENTs. What you need is someone who knows what tests to run to exclude what kinds of causes for the symptoms you are experiencing.

Treating Meniere’s & Its Symptoms

Here’s hoping that what you find out when you see your ENT doctor is that your symptoms are caused by something that is treatable. My fingers are crossed for you.

A h/t is owed to Pattywhack_the_bear whose intransigence on the subject of what specialist to see forced me to hone the point I was trying to make with my comments on this reddit thread. I did have to block her, but I also learned something from her. So congratz I guess?

Postscript

It bears mentioning that my only personal experience with Neurotologists has been the offer to inject gentamicin into my middle ear. We looked into this procedure and decided against it because I simply wasn’t having that many episodes of vertigo by that point. Removing the pressure and stress of architectural design work did more to stop my Meniere’s symptoms than any other intervention has done since.

Vertigo Sailing. Vertigo Flying.

Since being diagnosed with Meniere’s twenty years ago I’ve been on a boat three times. Getting on or off a boat is always the scariest part for me, relative movement being nearly impossible to predict even for the ablest of abled people. Even when I was an abled person myself this was the task that could break legs or ankles or feet and so I took it quite seriously.

I used to own a sailboat. It was a dinky little thing, a fourteen foot sliver of fiberglass with a nineteen foot mast. We took it to Twin Buttes in San Angelo and to Lake Travis here in Austin and I’d have people hanging off the trapeze on the side of the boat while we tacked across the wind. The wind whipping your hair as the spray hit your face and you flew across the water like a bird. Those were some of the most invigorating moments, the kinds of moments that you know you are alive because your heart is pounding in your chest and the adrenaline is coursing through your veins and you know (know, because you’ve done it more than once) that one wrong move could capsize the boat and cause all manner of upset for your passengers.

I loved the water and was more at home in it and on it than I was on the land. I swam like a fish and did my best to sail like a veteran captain, but not anymore. The vertigo seems to be always on the verge of occurring the entire time I’ve been on the water or even in the water since I started having to constantly fight it. Just looking at a moving ship’s deck spikes the anxiety and makes me want to run the other direction. It takes an iron will to propel me onto the boat, and I don’t dare go below decks or fail to hang onto something that isn’t structural as I move around on deck, always keeping my eyes on the horizon so that I don’t tempt the nausea to rise.

I’m know I’m alive at these times too, but it’s not a good kind of alive feeling. I could kill the anxiety with Xanax, but then I’m not going to be at my best. I’ll just be enjoying the show and marveling at the pretty colors and people, never taking any of it seriously. So I don’t go on boats much anymore and I haven’t gone for a proper swim in almost a decade now.

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This is going to change. I’m taking a few weeks off. Maybe more than a few. I’m not sure why I need to tell anyone this, I post sporadically at the best of times. Still, it bears mentioning that I will be AWOL and probably not posting much during the first few weeks of September because I’m heading to Illinois to visit relatives and to attend Chicon 8.

This will be my first convention experience since being diagnosed in 2005, much less my first flight and convention since Coronapocalypse. I might even get on a boat and go out on Lake Michigan like I did the last time I was in Chicago. The last time I was on a boat.

Next year we are thinking of going cross-Atlantic on Cunard and catching the Northern Lights (fingers crossed there) cruise ships might be stable enough for me not to notice the movement. Seven days on the water will be long enough to kill any anxiety about triggering vertigo even if it does ultimately trigger vertigo. Who knows? I used to get car sick riding as a passenger in any vehicle but these days I can’t even tell if we are moving unless I look out the window or the Wife hits a bump (she drives, I don’t) I’m planning on taking a bottle of Xanax with me anyway just in case.

Take what you need to cope and get out of town if and when you can. That is my suggestion. Take the things you need to feel safe and/or confident in your ability to manage the planned excursion and get some form of document from your doctor explaining why you need it in case anyone asks. Then just be prepared to sleep on deck so you can see the horizon line when you open your eyes. That’s my plan and I’m sticking to it.

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I’ll see ya’ll on the other side. Who knows, I might even post daily from the convention. A sailor’s wish is for fair winds and a following sea. When fighting ocean currents and weather can spell death even for the best of sailors, it’s a blessing worth having. The equivalent blessing for the modern technologist? Four full bars and direct access. Fingers crossed on there being wifi.

Postscript

Yep. I was on a boat.

…and I didn’t need a Xanax while on the boat, either. I did need to cling to stabilizing surfaces though. My balance is very bad and there is no denying this fact.

Caffeine Tales

Throughout my childhood and into adolescence, morning was announced with the smell of freshly brewed coffee. Dad would get up at six am, start coffee and read the morning paper in his tighty-whities reclined in his easy chair (there’s a mental image that you’ll never erase) while drinking his first cup of coffee. Mom would get up and brew coffee in the morning in those years after dad wasn’t around.

Short Wave – How To Brew Amazing Coffee With Science – August 16, 2022

Throughout childhood and into adulthood, morning and coffee were inextricably linked for me; and to this day, I wake up when I smell coffee brewing. It’s a better alarm clock that any other that I’ve discovered in nearly sixty years of experience. This fact of life presents a problem when you aren’t allowed to have coffee anymore.

Caffeine is high on the list of food/chemical triggers for Meniere’s, and it is one of the many things that they tell you to give up when you are diagnosed. When I was first diagnosed I poo-pooed this directive. I’d been drinking iced tea and Coca-Cola all my life. Dad had a gas station with one of those ancient 25¢ (15¢ for the beverage, 10¢ for the bottle deposit) Coca-Cola vending machines and I drank Cokes every time I had a quarter to spend in that machine.

I had only recently acquired a taste for coffee myself before being diagnosed with Meniere’s. Before that time I was a tea drinker even though I liked the smell of coffee brewing. Working as one of the ever-present drones in an office cubicle farm where coffee is kept hot and on demand all day long made me come to terms with the quality issues that most coffee services face.

A Hot Cuppa

I was reluctant to give up my morning coffee. I fought against giving it up until that one time at the Waffle House where I gave myself a vertigo attack while drinking coffee. That was case closed for me. No more coffee. No more caffeine in anything like a regular dose; so no Coca-Cola, no black tea, etc.

Dropping caffeine from my diet revealed other things, too. That thing I called sugar shakes as a teenager? That was probably caffeine shakes. I fell off the wagon and had a cup of regular coffee one Sunday a few years ago. The same fluttering in the arms, legs and stomach that I used to blame on a dip in blood sugar occurred; and it wasn’t sugar shakes because there was no high sugar intake that preceded them. I drink everything unsweetened unless it comes presweetened. The coffee was black and I still got the reaction a few hours later, a connection that I have purposefully initiated and observed several times since.

I had stopped having these sugar shakes after I stopped drinking caffeinated beverages and not only when I had stopped drinking Coca-Cola, where the sugar was in sugar shakes. I should have known it was the caffeine.

There was this one time when we were out driving test cars on short sleep and I needed a pick me up. When we stopped for our break in Sonora I got some 357 magnum caffeine tablets (a truck driver’s replacement for a pot of coffee) and took one or two of them on the drive down into the hole along the Devil’s River.

Then I had an argument with my test car. She was a beauty, that one. They had us testing tires on new Chevrolet Camaros. I had the prettiest one of the group, midnight blue with a black interior. Most of the interior had been stripped out and replaced with sandbags, but she was still the sweetest car I’d ever driven at the time. She wanted to go to Florida. I told her, “no, we can’t go to Florida.” Didn’t I want to see her on the beach? “Well, yes, of course, a beach would be nice, but Florida isn’t on the course we’re driving.” Come on, she said. We could just take off. It would be weeks before they could find us. We could have a lot of fun by that time. The argument lasted for hours and came to a head as we drove back into Sonora on the way back home.

I made it back to the shop that day, despite the greatest temptation I’d ever encountered in my life. In hindsight, I should have known that caffeine was not my friend based on that experience alone.

I can’t lie, I miss my morning coffee. The quick pick me up and focus that comes with the caffeine buzz. The energy and concentration. I miss that. I don’t miss the lethargy and feebleness of the downhill side. Hot green tea is still good and doesn’t give me symptoms of any kind. A nice, hot cup of green tea on a cool morning. There is nothing better when viewed from a distance.

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