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.

What long term treatment of the symptom looks like remains an unanswered question for me. I haven’t found anything that will work long term for ear pressure aside from surgery. Endolymphatic shunt surgery should work to ease the pressure and not destroy the hearing mechanism but I need to look into that more than I have before I decide whether it is worth pursuing. In the meantime I try to limit my self-medicating doses to really bad days and to not let the symptoms get so bad that they reduce my quality of life. It’s a balancing act.

I’ve been having ear pressure problems myself lately. I took a dose of guaifenesin/pseudoephedrine yesterday. The pressure is down to manageable levels today but I took another dose anyway. If tomorrow is the same I’ll stop for a few days and see what happens next. This is what self-managed chronic illness is like.

I did a little shuffling of the last few paragraphs of this article and the Sudafed article. I’m still pissed about them coming after my allergy medications.

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

Why Worry?

Baby, when I get down I turn to you
And you make sense of what I do
And though it isn’t hard to say

But baby, just when this world seems mean and cold
Our love comes shining red and gold
And all the rest is by the way

Why worry
There should be laughter after pain
There should be sunshine after rain
These things have always been the same
So why worry now
Why worry now

Dire Straits
spotify

One of my favorite songs from one of my favorite albums. It’s nice to be able to hear these songs again. This is all thanks to Aftershokz headphones. I have several pairs now. It’s been a musical desert for me until just recently. I was a serious audiophile once. Now nothing sounds right if it isn’t coming to me through these headphones.

Meniere’s Severity?

Someone over on Reddit/Meniere’s asked the question:

Does severity increase over time?

Since people are getting a diagnosis earlier these days, the symptoms will continue to manifest in greater severity until you reach whatever plateau your symptoms will top out at; unless you find a treatment that sends Meniere’s into remission. Makes it seem to disappear, like a cancer sometimes does.

Had I been diagnosed back in the 1980’s when my symptoms first appeared, I would have had a diagnosis for a disease that slowly got worse over the next twenty years until it turned me into a couch dweller that suffered vertigo near-constantly, for years. So, yes, the severity can increase over time. That doesn’t mean that it will increase.

As it is, I kick myself for not being honest with the doctors and demanding some kind of a diagnosis sooner. Had I started betahistine back in the eighties (the treatment that seems to work for me now) I might have been able to continue working far longer. The symptoms probably wouldn’t have been as severe. The plateau could have been much lower.

With remission, the symptoms disappear for years at a time. The people lucky enough to experience that bliss would tell you Meniere’s doesn’t get more severe. I would have liked to have had their experience, rather than mine. Newly diagnosed people may well have that experience. I hope that they do.

Going Deaf

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

I was diagnosed in 2003 and didn’t get a recommendation to sacrifice the ear until 2017, two years before going bilateral. 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 lose 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

How Was Your Day?

I woke up early Wednesday. 11:00 am. It was early since I hadn’t been asleep for even five hours yet at that point and it was the third night in a row that my sleep had been shorted. I was tired and I felt it, but that wasn’t all that was wrong.

I just felt wrong somehow. I made breakfast knowing that I would likely go to back to bed soon, and then I went upstairs to do some busywork. There was a dust storm in El Paso, the weather site I visited told me. It was a couple of hundred miles away, but there was definitely dust in the windy air here too. It was wrong, just wrong somehow.

The world kept coming unstuck. I’d think “I’m having vertigo” and then I’d check and the world wouldn’t really be spinning. It would want to spin, but not actually spin. It was a weird feeling.

After several hours of this The Wife came home from doing her busywork with friends and I decided to join her in the bedroom. When I got up from my desk I realized just how dizzy I really was. Walking downstairs was a conscious one step at a time procedure. The steps are never where they first appear when the dizziness gets set to ramp up into vertigo.

When I finally made it to the bedroom a few minutes later the world was actively spinning. “That’s just great.” I was almost relieved to be done waiting for it. I took Xanax and laid down at 5:30 pm, dedicatedly staring at the catbus and waiting for the spell to pass. It didn’t pass and I fell asleep instead. Fitful sleep that lasted for a good long time this time.

I woke up just now at 5:00 am on Thursday, almost twelve hours later. I missed dinner. I missed my WoW raid. I didn’t finish Wednesday chores. How was my day? I didn’t have a day. How was yours? Now it’s time to get the bins to the street before six so that the city will pick them up, and then I see if I can have real day today. Fingers crossed.

The Statler Brothers – Flowers On The Wall 1966
Postscript

It’s afternoon, just got back from a walk. This is now the best day since the 10th of March (the last time I was out walking) It’s the best day since getting the jab (I love that word for being stuck with a needle. Fits perfectly) last Thursday. It will never cease to amaze me just how much of a difference getting out and stretching the legs will do for your attitude.

The BeatlesGood Day Sunshine (Remastered 2009)
March 29

I suffered through vertigo again both Saturday and Sunday this past weekend. I spent all day today just trying to catch up on stuff I missed over the weekend. At least I got the laundry done. This turn to Spring will hopefully see a turn from the depressive trough I’ve been in for months. I’m trying not to see the weekend as a harbinger of anything negative for this year. It’s going to be sunshine and kittens 24/7. It’s just too bad I’m allergic to kittens.

My Friend Xanax

Third day in a row. Taking Xanax for light vertigo and playing World of Warcraft slightly stoned. This is what the bad days are like. It beats worshipping at the porcelain altar for six hours at a stretch. I’ll take it.

January 26th – Finally it passes again. So close to the dizziness that persisted through most of December and early January that I almost thought it was the same bout of dizziness. Who knows? I don’t think so, but then I don’t know what caused that long stretch of dizziness either (still taking the iron) What I do know is that you can have my Xanax over my cold, dead body. You can have it over my cold, dead body, because taking it from me will kill me as surely as a drunken rock star chokes on his own vomit when he is so out of it that he (or she) doesn’t know which way is up. The difference is, I didn’t do this to myself. Nature did.

…But then nature made them musicians, artists, with all the baggage those labels entail. Maybe nature did it to them too.

Anemic Dizziness

I’ve been dizzy for several weeks now, in an unbroken chain of dizziness. During this period of dizziness I had blood drawn for my semi-annual blood tests, tests that came back showing that I was anemic. I wasn’t anemic by much according to the normal ranges for iron in the blood; but still it was low enough that my doctor was concerned about it and thought to mention it to me.

I basically blew the concerns off at the time. I mean, anemia? Right? What is anemia? It means low levels of red blood cells in your blood. It wasn’t critical. It wasn’t like I was four pints low on blood and I really needed a transfusion (I’ve heard that reported by others who have had anemia over the years) I was a few points low on the percentages of iron in my blood in one test. I figured, no big deal, I’ll just start ingesting a bit more iron in my diet. I shifted to taking the Wife’s daily vitamin for a week or so (her’s has iron in it. Men generally don’t need iron supplementation, women do) but after that I went back to my same old Men’s One-A-Day that doesn’t have iron in it, and I forgot all about it.

Until today. Today, as I’m standing there with the world in a fog of dizziness around me, not actually spinning but always worried that the general dizziness might turn into vertigo, it suddenly occurred to me. Brain function. Oxygen carried by red blood cells. Red blood cells distinguished by their ability to carry oxygen because of the ability to bond with the iron that is in them (that is what makes them red after all) is it possible that this prolonged bout of dizziness is caused by the anemia and not the Meniere’s?

To answer this question I turned to Dr. Google, like most of us do these days. As usual, Dr. Google was not a useful source of information on the subject of anemia and related dizziness. This image is the summary that Dr. Google offered me for the search phrase dizziness low iron. See what is second on the list? It took a minute for the reality of the situation to sink home.

Dr. Google on dizziness low iron

Acupuncture. Acupuncture is second on the list of recommended treatments for dizziness. I was almost apoplectic with outrage while reading this summary. Acupuncture has no proven use for dizziness, and yet it is second on the list of what to do about dizziness from anemia. Why? Why is this on the list at all? Why does Dr. Google think that medicalnewstoday.com is a reliable medical news source? Why is this unknown resource cited in a summary that purports to offer solutions to a particular problem? Cited at the top of a list of other possible answers to the question.

I’d like to thank Dr. Google for putting the word anemia back in my vocabulary today (words keep disappearing on me when I’m dizzy like this) put the word back in my vocabulary list so that I can hone the question I want to ask, but seriously? Why is is this website quoted as a source? In Dr. Google’s defense, Healthline is the first resource offered on the page, but the clarification block appears directly under that resource. Healthline’s value as a resource is also questionable. I wouldn’t take their advice as being rock solid without checking facts in other places first. When you read symptoms off a list of symptoms and you start saying “yeah that sounds right” even though you haven’t been complaining about that particular symptom, it’s time to find a second resource.

Using the search phrase dizziness anemia proved to be even less revealing than the previous search phrase. The top resource on that results page was yet another poorly written questionable source that I wouldn’t trust to give me advice about which direction was North, much less give me advice on how to treat chronic health issues.

After a few hours of fruitless searching I decided to quit looking and simply treat the problem that I know exists and see if that helps. I already know I’m anemic because my general practitioner told me I was. I was anemic when this dizziness started. I’m going to approach the problem as if I was suffering from anemia, and simply start by taking some iron supplements to see if the dizziness recedes or not. I have also been listless and tired a lot lately. Maybe it is anemia after all? Stay tuned.


Several days later, after a few days of adding iron to my diet (The Wife’s supplement didn’t have iron in it contrary to my prior statement) I’m already starting to notice less dizziness. Which is good. I didn’t want to have to go back to the ear, nose and throat doctor and get steroids injected into my inner ear again.

I will only be adding iron to my diet for a few weeks at most. I don’t want to overdo it and cause other types of damage that can be caused by having too much iron. I’ve never suffered from anemia before. At least, no anemia that I know of. The doctor who told me I was anemic also told me that blood donation could not have caused the anemia, but I’m at a loss to explain why I would suddenly be anemic outside of the blood donation that I had just given the day previous to getting the blood tests done. I guess I will go back to him and get an order for another blood test and see if the anemia is still present, after I’ve finished my few weeks of iron inclusion.

Weather and allergies frequently mess with my vestibular system. These are a known triggers for Meniere’s in some people. I thought the dizziness was coming from weather and allergies, but then it lasted through several changes in both. I tried the vestibular therapy exercises, as I mentioned previously on the blog, and they helped for a few hours but the next day the dizziness would be back. This is a last-ditch effort. I did not want to take iron supplements because I know that iron can be quite toxic at high doses.

I don’t know what caused the dizziness and I won’t know, possibly ever. This is the problem with chronic illness and common complaints like dizziness. If the dizziness that I’ve had for a solid month goes away, and I get a blood test that shows the anemia is gone, I will have demonstrated correlation. An interesting set of facts that might be related. If I get extended dizziness several more times and each time taking iron makes it go away, I’ve demonstrated a possible causal link. At least for me.

Dizziness is one of the most common symptoms/complaints that doctors hear. Almost anything can cause it. Dizziness is not just one thing, either. It can be a mental fog. It can be a feeling of imbalance. It can be active rotation and when it is active rotation it should be referred to by its real name, vertigo or rotational vertigo. Every time I get a symptom these days I’m always wondering if it is Meniere’s or if my thinking it is Meniere’s means something more serious is going on and I’m missing it.

What I do know now is that next time I donate blood I will be sure to include more iron in my diet before and afterwards. I don’t want to do this again and blood donation is still my only explanation for the anemia. If I become anemic again even with these precautions, then I’ll get concerned.