Ear Fullness

Ear fullness is a common complaint among Meniere’s sufferers. It is one of the key indicators of Meniere’s along with a specific kind of hearing loss and vertigo attacks. What it feels like is hard to describe.

If you have ever flown in a plane or gone up in a tall building, climbed a mountain or gone down to the seashore from a high elevation, you have likely had a feeling of pressure inside your head. A pressure that is directly behind the ear canal. Frequent travelers know the feeling and what to do about it. Pulling on an earlobe, working the temporomandibular joint (TMJ) by shifting the jaw back and forth until the ear pops, chewing gum, etc. There are many ways to get the canals behind your ear, the eustachian tubes, to clear so that the pressure in the inner ear becomes equal to the pressure on the outside of your ear and the discomfort goes away.

Ear fullness is like that, but not like that. Imagine that kind of discomfort elevated to a level of pain that is very hard to ignore, and then imagine that you can’t get the pain that feels like it is right behind your eardrum to go away no matter how hard you chew gum, work your jaw, etc. This pain goes on for days, sometimes for weeks.

You can’t get the pain to go away, the pressure to equalize, because the pain doesn’t come from a pressure imbalance behind the eardrum. It comes from the fluid-filled chambers of the inner ear itself, the cochlea, and the fluid imbalance that produces all the other symptoms of Meniere’s disease.

The first time the ear fullness presented itself, I sat in the shower for an hour or more trying to make what I thought was a plugged eustachian tube clear itself. Instead I induced a multi-day vertigo spell by rupturing one of the vessels in the cochlea of my left ear. As you can probably imagine, I don’t recommend that form of treatment.

The next time ear fullness presented itself a few years later, I had to resist the temptation to gouge the ear out with a sharp implement. I understandably didn’t want to look like Vincent Van Gogh, who might very well have suffered from a similar affliction. I had access to a sauna at the time and I spent far too many hours sitting in it just hoping that the pain would ease off. Ease off just a little.

The pressure never did ease off. The sauna did do wonders for clearing my sinuses, though.

There is no known way to reduce this pressure in the ear. It is possible that early treatment with intratympanic injections of steroids can reduce the pressure and prevent hearing loss in a newly affected ear, but it is not a universally successful treatment, and it carries potential hazards that make it an undesirable treatment for routine incidents of pain. Hazards like permanent deafness and severe instances of vertigo.

Because I thought that what I was suffering from was allergies, I experimented with various allergy drugs trying to find the right balance of treatment that would produce the best effect with the least side effects. What I settled on was Pseudoephedrine and Guaifenesin which I took pretty routinely every six hours for months at a time. I took those two drugs for about twenty years or so every Spring and every Fall.

With a nod to the concerns of my cardiologist I have forgone continuing the use of Pseudoephedrine unless I simply can’t breath through my sinuses at night. However, I still take Guaifenesin when the ear fullness rears it’s ugly head. I don’t know if the soothing of the pain is placebo, or if the Guaifenesin is somehow helping the fluid in my ear to balance out. I don’t know, and I don’t care. I feel better after taking it and that is good enough for me in the end.

Pain God

Someone that I was chatting with used the phrase pain god to describe the supreme deity that dealt out his pain to him. I was not sure whether to laugh or cry at the phrase pain god. That god? That God you can prove exists, unlike all the other gods people talk about and believe in.

There was this time I was arrested:

I was out late, it was a busy night, the inspection sticker was a year out of date and the cop thought I was giving him sass when he flagged me down. It was two Austin bicycle cops in their ridiculous spandex outfits talking to two or three other cops that they’d just quelled a riot with, just standing on the side of the road. It’s dark, it’s just after midnight on a Friday in downtown Austin.

The Austin Film Festival is going on all over the city. These police were hyped up on adrenaline because of the riot they just broke up and the massive traffic snarls from the city-wide event. One cop spots the out of date sticker as he is scanning vehicles, joking about breaking heads with his buddies. He pulls out his flashlight, walks over to were I’m sitting in traffic and proceeds to harass me about the sticker.

It’s a rural Texas tradition to ignore your state inspection sticker. Who cares? Only the state cares, and rural Texas sneers at Austin and state government in general. Texas government has to enforce the safety laws they enact, and they did this by creating an inspection sticker that you had to jump through separate hoops to get in addition to the hoops you jump through to get your state tags.

When you are driving around on your own ranch or in the small towns that dot the wide expanse of Texas, you never see state actors that can give you crap about the sticker on your windshield. You just see local cops that you probably know by name, and they give you a warning and you go get your stupid sticker that doesn’t take into account the quality of the roads (or lack of roads) that you drive on in your daily life.

Then you move to the big city and suddenly being a scofflaw like everyone else out in the countryside is a problem that could cost you your life. The harassing police officer and three of his buddies pulled me out of the car and proceeded to sit on my back while they cuffed my hands. Then they arrested me and hauled me off to the drunk tank to spend some quality time negotiating with my Pain God.

Piriformis Syndrome causes me to be in constant pain while sitting; and being yanked out of my car and sat on aggravated that little problem. Have you ever seen a drunk tank at a city or county lockup? The one in Austin has concrete floors and baby-blue colored foam benches facing a TV covered in mesh that obscures the screen. The volume is so low on the TV that it is an annoying almost-audible whisper, not unlike the whispering among your fellow prisoners in the drunk tank.

You have to sit there until they process you and you can be released. Sometimes the sitting lasts for days. Sitting, not standing, not moving around at all. Without moving except to go in to the provided toilet room, also painted baby blue like the other walls in the tank. A baby blue that was probably calming some twenty or so years ago when the walls were painted, long before the accumulated puke and other bodily fluids mottled the color into something approaching a childhood nightmare. The toilet was a room that you’d rather not go into in the first place.

So I sat there. I sat unmoving in that one place for about 14 hours, in excruciating pain the entire time I was there. No one in authority was even the slightest bit interested in my pain or helping me with it. In extremis, I decided to take a crash course on meditating. I would meditate on the qualia of my pain all through those long hours of torture.

Staring at the floor through my tented fingers, elbows braced on knees, I contemplated the pain. I didn’t drink anything, didn’t use the restroom. I couldn’t have used the restroom even if I had needed to go desperately. It would have taken a catheter to get any body fluids out of me, I was that paranoid of being ambushed. Of being watched. I just sat and focused on the pain. I traced it up my leg to my lower back and then I became one with the agony. I inflicted my pain and endured my pain and I was my pain.

When The Wife figured out I had been arrested… As I mention in the linked article, I was where I was with a car in the state that one was in because I needed to pick her up and would never have been downtown in the first place without her need to be rescued. She was never rescued because the police decided she didn’t need rescuing. It was more important to punish the scofflaw for his out of date inspection sticker.

That one phone call thing? It’s complete bullshit in most of Texas. You can call if you’re calling a landline. If you’re calling a cellphone you have to give the private contractor that provides phone service to the jail a credit card number to charge for the call, and you better have that number memorized because you don’t have your wallet in jail to get access to the card itself. If you’ve done that homework ahead of time, you can call. If you haven’t done that homework you don’t get to make your one phone call.

So when The Wife finally got home and found I wasn’t there, when she figured out that my cellphone still working meant I probably wasn’t dead in a ditch somewhere. When she remembered that there had been a riot downtown that night and wondered if I had been caught up in that, she came down to the jail and rescued me before I died of renal failure. That is, she came to rescue me after she had gotten a ride back downtown to get her car the next day, there being no way to get anywhere or do anything until morning the next day.

I think I was probably more glad to see her that morning than I had ever been before or since. So yeah. I’ve met the Pain God. I was him for a day. I would prefer not to be him again.

if you are not worthy of trust as police, as leaders, as the press, then you must be held to account by those whose confidence you have betrayed.

Stonekettle

Warning Signs of Vertigo?

Doc diagnosed me with cervical vertigo

I had to look up Cervical Vertigo. I didn’t find an article I liked until I went looking on the VeDA website. I like the tone of that article. In all my time of suffering, even with my long history of vehicular accidents, no one even mentioned that neck posture could be a cause of my symptoms.

I was surprised by this finding. More surprised than you might be reading this here. I tend to think I have everything that I read about. The Wife says this makes me a hypochondriac, I think this means that I’m an empathetic person. I’m going to stick with my assessment of the situation.

The questioner went on to ask about warning signs of oncoming vertigo. That is an interesting question, in and of itself. There aren’t always warning signs. Sometimes you turn your head the wrong way to fast. Sometimes you look out the side window of the car and the sympathetic parts of your brain wiring turn that motion into rotational vertigo. Sometimes watching a movie can set it off:

Sometimes there are warning signs. Visual migraines, or a change in perception of the light around me is one I’ve started noticing lately. A change in tinnitus pitch or intensity almost always signals something more severe is in the wings. I almost always take something when I notice this. Being proactive in treatment is how you avoid a full-blown attack. Historically I would notice a taste in the mouth. A metallic or saccharine flavor. If I noticed that I would also take something, generally something more dramatic than the Guaifenesin that I would take for changes in my tinnitus. Something like Xanax, which I try not to take too often. It is too habit forming to indulge in needlessly.

In the end, paying attention to what your body is telling you is the only way to be on top of your symptoms and preventing the worst of them. I wish all of you luck in your own treatment regimens.

reddit

The Bypass

The phone buzzes with a notification. “Chest is open. She is on pump now. Everything progressing normally.” The Wife is undergoing open heart surgery. I sit in the waiting room alone, mercifully mask free because of this.

I remember the first time I heard open heart surgery used as a phrase. My grandfather had undergone a quintuple bypass back in the seventies. The surgeons had marveled at the complexity and his near-miraculous survival at the time.

The doctors and nurses now refer to these kinds of procedures as routine. “We do them all the time.” My heart doesn’t know this, refuses to accept that the opening of that beloved chest could be anything less than a near imminent death event. My all too active imagination can paint the scene in Technicolor for me, if I allow it.

I don’t allow it. I don’t want to see, to think of her that way. A piece of meat on the cutting table. Instead I will fill my head with classical music and meditate on the reunion we will have in a few short hours. No other outcome will be entertained no matter how many times those ravens of doubt perch over my mental doorways. I will see her again. We will embrace and she will chide me for being a silly sentimental old man.

That is the picture I will paint in my head instead of those other nightmares. Time enough for the nightmares afterwards.

Featured image: NucleusMedicalMedia

Postscript

The cardiologist remarked that he had never heard of a fever-induced trip to the emergency room being used as a detection method for cardiological issues, but we had known about the heart valve deformity for years by that point. The fact that she would need surgery at some point in the future has been a known quantity since the day we started regularly going to the cardiologist, at least twenty years ago. It was her blue fingers that freaked me out that night. Her fingers had never been that color before.

She was diagnosed with an ESBL infection in addition to the heart valve blockage. They didn’t even know for certain that she had the infection, it was just on the plate that they used to culture bacterial growth, to try to see what was causing the fever. She got the special antibiotic drugs anyway, and the nurses had to gown up for the entire time she was at the hospital. Visitors and guests were expected to gown up as well. This earned her a private room later in her stay, so she wasn’t going to complain about the extra drugs she had to take.

I insisted that they run tests to determine if she was still infected with the antibiotic resistant strain of e-coli before they released her, and the tests came up negative. That was all I was worried about. I didn’t want her to be released only to have the fever recur and me have to take her back to the ER a second time. Her attending physician didn’t think it was the ESBL causing the fever anyway, she thought it was a allergic reaction to a Botox outpatient treatment done the day before. That is the most likely culprit in this little medical drama, the antagonist that triggered open heart surgery for the Wife.

She starts outpatient Cardiac Rehabilitation next week. Ah, I remember those days fondly:

The Wife has complained repeatedly that her renewed heart beats too fast. When she airs her complaints, I quietly thank her cardiologist for making sure her heart continued to beat regardless of pace. I would have missed her presence, her voice, if he hadn’t. It would have been difficult to find a reason to go on without her heart beating next to mine. Hopefully that predicament has been postponed for another twenty years. Here’s hoping we both make it to our fiftieth anniversary.

Friday July 30, 2021 – She got up and got her pills today all on her own. She’s been home for a week and relied upon me for everything until today. The Wife is coming back to herself. It is a good sign.

Opening Hazard

I’ve been taking part in illness tracking with outbreaksnearme.org since the Spring of 2020, when the Trumpist COVID debacle was in full swing. Ya’ll remember those days right? The hazy smoke-filled days as civilization fell? The zombies roaming the streets swarming the unwary?

There was no official testing to be had. No way to know who was sick and who wasn’t and no way to socialize without risking your own life. So we hunkered down without any government to been seen, no authority coming to the rescue, waiting for the chance to score some toilet paper from the remains of the local shopping center while covered in protective gear to keep the zombie plague at bay.

When outbreaksnearme.org started it called itself COVID near you but within a few months the organizers realized that they could use the more generalized data to track spreads of any infectious disease in the population. It also allowed people who just had symptoms to report themselves sick even when they didn’t know what it was.

A full year has passed since those hellish days of anarchy, with me always always responding “healthy” to the prompt:

COVID Near You is now Outbreaks Near Me! We now track flu too. Are you still healthy? Please answer Healthy or Sick. Reply STOP at any time to unsubscribe.

Today I finally had to respond with sick. The Wife has been out galivanting around town joyful at having escaped from the zombie apocalypse, mask-less and fancy-free for the first time in recent memory. While she was out having a good time she apparently picked up a bug. I, of course, caught it from her because that is what I do. I’m three days into it now, a nasty cough, aches and pains, and chest tightness that is triggering the Meniere’s symptoms. I’m having a joyful time.

It’s almost enough to make you miss 2020. Hunkered down in your hovel, hoping to score a clean corncob to wipe your ass with. Zombies scratching at the walls while you heat yourself next to the fire you made from the last chair in the house, boiling the leather upholstery for something to drink and chew on later. At least there was only one disease out there then. One disease that made you want to chew on the brains of your neighbors.

Ah, the good ol’ days.

Featured image: What I Learned About the Coronavirus World From Watching Zombie Flicks

Postscript

I’m not dead yet.

Monty Python – “Not Dead Yet” SceneAmazon

…although the lethargy spread out over nearly a week. I’m only getting back to my old habits now, three weeks later. Getting back to my old habits just in time for the Wife to be hospitalized with some other unrelated illness. Ah, the joys of normal life.

Crip Time

Crip time is this diagnosis of the exacting, you know, and punishing even, standards of economic time by which each human is measured as an index of our worth. That really is what is at stake here.

Sara Hendren (Crip Theory – Wikipedia)
SpotifyInquiring Mindsomny.fm
What Can a Body Do?: How We Meet the Built World

I was on a work call when everyone (a group of disabled women) was only communicating through text. Text read out by screen readers. Time slowed down. We all typed one after the other. Waiting for the other to complete their thought. Waiting for others to read. Waiting for others to type. The entire process had patience embedded in it, but also a challenge to “normative” ideas of discussion time and pace. No one impatiently typed over others or wanted to “move things along”. The time was well spent in engaging with each other at our own pace.

madinasia.org

Time is not what we think it is. Time is not what business tells us it is. Time is not the metronome beating out endless seconds. Time is the breath in your lungs. Time is the beating of your heart. Time is the length of the hug you give, the hug you receive. Time is to be treasured.

Featured Image: MoMA

Long Haul COVID

spotifyVox – Unexplainable – The viral ghosts of long Covid

Covid-19 appears to be one of many infections, from Ebola to strep throat, that can give rise to stubborn symptoms in an unlucky subset of patients. “It is more typical than not that a virus infection leads to long-lasting symptoms in some fraction of individuals,” Iwasaki said.

In this week’s episode of Unexplainable, we dive into what we know about long Covid and what other viruses can teach us about the condition, including the leading hypotheses for what might be driving symptoms in Covid long-haulers.

Vox

I suspect that Long Haul is a syndrome like most sufferers understand Meniere’s to be; a group of symptoms that have divergent causes. It is the only way to explain the varied treatment outcomes. The people who don’t find relief from being vaccinated for SARS-Cov2 probably do have an immune system problem and not reservoirs of the virus. It is entirely likely that both causes are simultaneously true for different sufferers.

Meniere’s treatments that I find give me relief do cause worse symptoms for other sufferers. Different causes is the most likely explanation for these results.

From a letter to Vox

Going Deaf

How old were you guys when you were diagnosed and when did your hearing start needing help?

It varies person to person. No one can tell you how your disease will progress or that you will or won’t be losing your hearing over the course of years. Unless you go bilateral like I have, you will always have at least one good ear to hear with. Only time will tell, so take comfort in that.

I can’t hear music right anymore. The bass tones are gone in the left ear and impaired on the right. If I want to hear a television program I have to plug in headphones or turn the volume up very loud. I won’t use hearing aids because I’m frequently plagued with ear pain from loud noises, so I have to be careful with the volume and the mastering of modern soundtracks varies so much in volume that it can drive you crazy trying to keep the soundtrack audible and yet not painful to hear.

Bone conduction headphones are my savior. I can only listen to music through them and hear it correctly. I need to figure out how to get them to work seamlessly with the gaming console we use to watch television; get them to work for me without turning the volume off for everyone else when I turn them on. I’m still working on a solution for that.

If you do loose your hearing, you don’t want to be caught flat-footed having to learn a whole new method of communication on the fly. So if you are concerned about going deaf, study hearing loss. Learn American Sign Language. Get comfortable with the worst case scenario so that you can remove your fear of it. Once you are no longer afraid of what might happen, you can try to get comfortable with the reality that you have to face right now.

reddit

Drowning in Depression

What makes a person go online begging for help from total strangers, and then when someone tries to understand the problem, tries to understand why this stranger is publicly threatening to kill themselves, they turn on the would be helper and try to submerge them in their ire?

As I deleted all my comments from the thread that started this thought train moving and reported the post as a violation of the subreddit’s rules (what I should have done in the first place and will do the next time I see one of these kinds of posts there) I was reminded of this passage from Dune:

“Once on Caladan, I saw the body of a drowned fisherman recovered. He–“

“Drowned?” It was the stillsuit manufacturer’s daughter.

Paul hesitated, then: “Yes. Immersed in water until dead. Drowned.”

“What an interesting way to die,” she murmured.

Paul’s smile became brittle. He returned his attention to the banker. “The interesting thing about this man was the wounds on his shoulders –made by another fisherman’s claw-boots. This fisherman was one of several in a boat — a craft for traveling on water — that foundered . . . sank beneath the water. Another fisherman helping recover the body said he’d seen marks like this man’s wounds several times. They meant another drowning fisherman had tried to stand on this poor fellow’s shoulders in the attempt to reach up to the surface to reach air.”

“Why is this interesting?” the banker asked.

“Because of an observation made by my father at the time. He said the drowning man who climbs on your shoulders to save himself is understandable — except when you see it happen in the drawing room.” Paul hesitated just long enough for the banker to see the point coming, then “And, I should add, except when you see it at the dinner table.”

Dune by Frank Herbert (1965) pg. 139

(a Reddit thread discussing what the scene means)

When you are drowning in depression, it will do you no good to stand on the shoulders of the swimmer next to you. You will both surely drown if you do that. This is why rescuers in actual water emergencies frequently have to wait for a drowning person to stop fighting the water before they can attempt to pull the victim to safety. A drowning person will drown you and themselves in their frantic attempts to stay up in the air. They don’t know what they are doing. A depressed person needs therapy, and solid, stable people around them. Not more depressives that will pull them down deeper into despair.

Had I not found aid in the form of disability payments back in 2005, I would have been dead in 2006. I had it all planned out. I just had to start the plan in motion and it would have worked flawlessly. Probably. I was drowning in depression, convinced that I had to keep working to have any value to the people around me. It took almost another decade for me to figure out that I had value that wasn’t calculated in dollar figures, something that a working person who is convinced that they must keep working to have a meaningful life can’t understand. Not really.

I know this because I was one of those people and I can see the train of thought that lead me from my deepest pit of despair to where I am now. But I’m still burdened with the same chronic illness that forced me out of work twenty years ago. I know this because any time I forget who and what I am and try to start back into my old ways the vertigo sets back in and I have to take a week off in order to recuperate. Just like I had to do every other week back in the bad old days when I thought force of will alone would see me through.

I cannot rescue another chronic illness sufferer if that person can’t understand how I’m still treading water all these years later and flings insults at the methods I employ in order to cope. Hopefully they will also survive long enough to see the error of their ways. I won’t know because I can’t save them and save myself at the same time. They’ll have to find someone with a firmer grasp on reality than I have. I have people who want to see me keep on living. I hope that they do too.

Short Wave – How To Reach Out When Someone You Know May Be At Risk Of Suicide – April 5, 2021

Postscript

She was going to have to give up nursing in order to treat her Meniere’s if she had Meniere’s. She didn’t have vertigo, so I tried to explain to her that she probably was misdiagnosed and should seek a second opinion from a professional. She then scathingly informed me that she was a professional who damn well knew what was wrong with her. She had endolymphatic hydrops that she developed from exposure to a chemical (she never said what) and hydrops was Meniere’s. She said I needed to educate myself. She then attacked me for being on disability for 15 years, leeching off the government as she put it.

It isn’t Meniere’s if you know the cause. It isn’t Meniere’s if you don’t display the full spectrum of symptoms. It isn’t Meniere’s if you can cure it. I wish I didn’t have Meniere’s. What she has isn’t Meniere’s. What she did have was evidence that:

It has been said that he who is his own lawyer, is sure to have a fool for his client; and that he who is his own physician is equally sure to have a fool for his patient.

quoteinvestigator.com