This week on the SGU Cara decides to trash all things Hippy and all things Austin with the following line,
These are the places where they sell, like, raw goat milk because apparently cow milk is unhealthy. And they have only organic free-range bleah.Cara Santa-Maria SGU #705
Cara deciding to trash all things Hippy isn't surprising. There is little at the typical health food store that warrants a special trip there. Little, unless you happen to have special dietary needs. If you have food allergies. If you are lactose intolerant. If any number of food-related issues bother you, the health food store used to be the only place you could go to find relief. Considering that skeptics would claim you couldn't be allergic to foods, until those allergies could be demonstrated, and still flame-on when anyone mentions the word gluten, panning all things health food related is completely understandable.
I just happen to not react to goat's milk like I do cow's milk. So I can drink goat's milk and suffer little or no ill effects. I still can't eat pizza, that is too much cheese of any kind, but at least I can put a slice of goat cheese on my hamburger and not have to worry about reacting to the lactose in the cheese. And the best place to get that kind of food is still at a health food store. I buy my oat milk, my Nada Moo, goat cheese and goat milk, and try to restrain myself as I walk past the chocolate and liquorice on the way to the register.
The Wife, who can consume all the cheese she wants because she was descended from Mongols who were raised on yak's milk, has some very unflattering things to say about us Mediterranean types whose ancestors tended goats and sheep, but I also have some insults I could hurl in return considering she's pretty much 100% Irish. I won't utter them because I don't feel like being beaten up by any Irish who might read this and take offense. I have to be able to sleep sometime. It all comes down to genetics and how your particular gut came to be in the here and now.
Which brings me to the idea of drinking raw milk. If you are drinking raw milk and you don't milk the cows (or goats. Or sheep) yourself, you are just asking to get sick and possibly be killed by the naturally occuring bacteria found on the udders and in the milk of any animal. And I laugh every time I read the label on cheese and it trumpets made from raw milk. This is just another marketing ploy like organic or natural, since the process of making cheese kills most of the bacteria that lives in the milk. That is why we started making cheese from milk in the first place. If you are still concerned about the possibility of food poisoning, don't get the cheese made from raw milk. Pasteurization is a good thing. It's why we have milk on supermarket shelves today.
I mean, we could irradiate the milk and skip the pasteurization flavor change problem, but the fantasists who think that pasteurization is bad also think that irradiation of food is bad. There really is no way to win over everyone. There's always going to be one or two of them that have to stick their fingers in the electrical outlet before they'll believe that electric shocks are painful, and there will be at least one guy that swears electrical shocks make him feel better and so recommends you shock yourself two or three times a day.
Steve's suggestion that bulk foods were useful, while the other offerings at the health food stores were not, is also slightly off-cue. The reason that goods are offered in their own sealed containers should be readily apparent to anyone who gives this much thought. But for those who don't think a lot, I'll spell it out. Adulteration or contamination of the product, which was a problem back in the days when everything was offered in bulk quantities. Some nefarious grocers would dilute the products offered and charge the same rate. This is essentially how all vodka is made, but very few people know that their vodka was distilled to 190 proof at the distillery and then cut in half with water at the bottler. There is also the problem of some anonymous others tampering with the bulk products and no one noticing (think Tylenol) as an Austinite, and someone who frequents health food stores for his oat milk and goat's milk products, I could buy a lot of products in bulk. I just don't.
Austin is the birthplace of Whole Foods and a few other now-defunct health food chains. I'm an owner at Wheatsville Food Co-op. I could shop in bulk products if I wanted to. I don't shop in bulk products because I don't want to have to trust every person who passes by the bulk products bins not to drop their chewing gum in there with my morning steel cut oats. I'll take the time to recycle the packaging, that is fine by me. I like branded, labeled products in sealed packages. It's probably the most American thing about me.
I would rather the packaging not be plastic packaging, plastic packaging being the reason that health food stores came up at all in that Skeptic's Guide episode. I try to avoid plastic packaging when I can, but it is nearly impossible to avoid plastic when it comes to food packaging. You can count me in for testing new packaging that isn't plastic. Oh, and Jay? You want plastic that breaks down on its own? That also existed once upon a time. They tested plastic bags that degraded in the sun faster when they first rolled out plastic bags, back when everyone was worried about paper demand destroying all the forests. That plastic turned into micro plastics too, just like regular plastic. The only way to avoid this is to create disposable items from something other than plastic. Say, compressed corn starch.
Similarly I believed, and most libertarians still believe, that freedom of speech meant you had to listen to every idea equally. Give every idea equal weight. This crazy notion is not limited to just fringe political groups, it has been embraced by a very large portion of conservatives and Republicans, and even American liberals don't understand some of the finer points of what the first amendment, freedom of speech, means.
The problem with continuing to listen to bad ideas is that each successive generation receives those ideas as if they are all of equal value. This position is obviously false. Some ideas are incorrect. The world is not flat, it is visibly curved to any observer who cares to study the subject. The Earth, her moon, the other planets and their moons, etc. all move in mathematically predictable ways around the sun. We do not have to prove to each successive generation of human beings that the Earth is not the center of the universe. We need simply show how we know the Earth is round, the sun the center of a solar system, for them to grasp the math involved with these correct observations. These are factually demonstrable truths that do not have to be viewed equally with the Ptolemaic system, requiring each successive generation of human beings to determine which finding is the correct one. Learn a little math, do a few observations, yep, that confirms the heliocentric model. Onto the next thing we have to learn.
Not all truths are as obvious as the basic findings of astronomy, and even those findings are not universally embraced by all modern humans. There are a few disturbed people out there who still think the world is flat, and we don't let those people run NASA for a reason. That reason? Because their denial of science disqualifies them from leading a scientific agency. They fail the test of expertise, another demonstrable truth.
There are things that experts know that the layman does not. I know things about CAD systems and architectural detailing that would bore the pants off of anyone who isn't enamored of building systems and the illustration of same. That expertise qualified me to hold a high-paying job in the architectural field once upon a time. It had real value; and expertise, all expertise, is demonstrated through that value. If you plant lima beans for a living, and you do it successfully for long enough, you become an expert on lima beans. But that doesn't make you an expert on rocket ships.
Which brings us to another truth. Expertise is limited in scope, and the farther outside your expertise you venture, the more likely you are to be wrong in your beliefs. This is the Dunning-Kruger effect in a nutshell. Everyone believes they know more about subjects that they are not experts in than they actually do. This is why a brain surgeon isn't a good candidate to run a poverty program. The fact that Ben Carson successfully navigated a hierarchy as complicated as working in a hospital presents is probably the only reason he still has his cabinet position. He knows how to keep his mouth shut when he needs to. When he has a job to do and isn't campaigning. He knows the value of expertise and he doesn't visibly contradict the experts around him who know things about the department of Housing and Urban Development.
When the Republican party formed back in 1854, the value of expertise was understood. With little else to distract the population in the way of entertainment, politicians and pundits would debate for hours in front of huge crowds, working and reworking the issues of the day. Abraham Lincoln was an expert at navigating the treacherous terrain to be found between openly advocating for the abolition of slavery, and allowing slavery to encroach into the Northern states that hated slaves and slavery for what it did to the lives of average men. Hated slavery for the degrading poverty and dearth of industry in the South that slavery imposed on the economy of the South. The Lincoln-Douglas debates featured his abilities to master the subject, a success that eventually snagged him the nomination of the Republican party and through their growing influence, the presidency of the United States.
He then expertly managed to conduct the the office of the presidency, successfully, while maintaining a war with half of the original republic, and at the same time engineering the largest change in civil society, the abolition of slavery, that the United States had seen in its short 75 years of existence. Had he survived his time in office, had he not been felled by Southern hands and succeeded by a Southern sympathizer, many of the problems that we wrestle with today would never have manifested in the first place. That was the master politician that Abraham Lincoln was. That was the kind of organization that the Republican party was when it was progressive and liberal and on the right side of history.
From Lincoln to the Orange Hate-Monkey in 150 years. That is what the Republican party gained from not understanding that there were real, actual truths underneath all the political posturing. That science and expertise have real, demonstrable value. GIGO or Garbage In, Garbage Out has taken its toll on the GOP and rendered it the political organ of a would-be fascist. A would-be fascist whose political supporters want to enact a racial cleansing on the United States. The party that ended slavery has become the party of the inheritors of slavery's stolen wealth. The irony is almost rich enough to laugh at, if the fate of the world didn't hang in the balance, and it does currently hang in the balance.
It hangs in the balance because Vladimir Putin did work to get Donald Trump elected as president. He worked to get Britain to embrace Brexit, and his troll farm is still actively attempting to subvert political processes in the United States and all across the world. He is seeking inroads to power wherever he can find them, and right now the internet is his tool of choice. All information on the internet is now suspect. Nothing can be taken for granted. Every platform, every system, every piece of information technology can now be possibly subverted by criminal actors attempting undermine the great advances that have been made in the world, and they are doing this with the technology we, the West, invented.
Make no mistake, we have made great strides toward improving equality across the world. In between the war profiteering and other boondoggles embarked on by the powers that be in Washington DC, the technology we created has moved out of the United States and improved the lives of people everywhere. So much so that poverty in the world is the lowest that it has been at any point so far in history. But the spreading of information and equality through technological systems has opened the doors for misinformation and distraction to be spread in the same way, through the same mechanisms.
Political bias, racial bias, religious bias. All these things still exist, and all these things are corruptions of the truth. They are weaknesses that the power-hungry can exploit in order to gain more power. That is what Vladimir Putin has done in Russia by re-establishing the Russian Orthodox church. He gives ethnic Russians a thing to believe in now that the dictatorships that liberated the Russian people from Czarist rule have fallen. He foments friction at the edges of his political empire, his fake republic, and exploits the resulting distrust by seizing land belonging to neighboring nations, by re-asserting old Soviet alliances. His neighbors fear him, which is what he wants, and his old foes are confused, fighting among themselves. All by his design.
The first thing we need to do, if we want to oppose this new criminal oligarchy founded by Vladimir Putin and embodied in his paid-for stooge in the White House, is to know who it is we are fighting, why we are fighting them and how we intend to win this fight. The first casualty of this information war has to be the ability to promote falsities as truths. If we can't even determine what is true and what is false, then we have already lost the war.
Garbage In, Garbage Out. If we believe what we are told by others with no need to verify what is true, we are sheep lead to slaughter. Subjectivity is the enemy. The people we are fighting are liars. Charlatans. Confidence artists. People who say things we want to believe but which are not demonstrably true.
Many people cite this quote, few understand it. To be eternally vigilant is to practice due diligence as often as required when it comes to the things you believe as well as the things you are told. What is due diligence? Caveat Emptor. The two states of mind are interchangeable. Healthy caution and skepticism. If you want to be at liberty, if you want to maintain liberty, then you must be skeptical of all things that are not immediately apparent.
As an example. Freedom of speech is not free. You cannot say whatever springs to your mind and expect to suffer no consequences. This is what most people think freedom of speech means. Speech without consequences. All speech has a cost, in that you may be held accountable for the results of the words you speak. This is why you are punished for causing a panic by yelling fire! when there is no fire. It is not the speech that is punished, it is the result of the speech. The cause of the harm was speech if anyone was harmed in the resultant panic. No harm, no foul, as the adage goes.
But how do you assess harm? Is all harm readily apparent? If you are not harmed by a person's speech, but your neighbor is, should you care? What if your neighbor is a different race? A different religion? A member of a different political party?
First they came for the socialists, and I did not speak out—
Because I was not a socialist.
Then they came for the trade unionists, and I did not speak out—
Because I was not a trade unionist.
Then they came for the Jews, and I did not speak out—
Because I was not a Jew.
Then they came for me—and there was no one left to speak for me.
That way lies death. So harm, even delayed, indirect harm, should be guarded against. And that, dear reader, is the quandary. As I noted on my last article about Alex Jones, deplatforming is not censoring a person's speech. All these people claiming they have been censored by social media have their own websites. They have just as much access to consumers as any other individual in the system has. They simply do not have a megaphone through which to spread their lies. We are fighting an information war here, and the first thing that has to go is information which is demonstrably false.
Kicking ethics violators off of Twitter and Facebook is not censoring them, it is applying objective rules to subjective life. This is necessarily a messy business, but then bad people do exist. Bad ideas do exist. Stupid people do exist, and they don't know the difference between a good idea and a bad idea. This requires things like rules of order (Robert's Rules) parliamentary procedures, etcetera. Objective ethical standards have to be in place and they have to be enforced so that ideas can be properly tested and debated. You cannot call for harming another person and not expect the platform from which you speak to be taken away. That is simply good information hygiene. Any platform which doesn't distinguish between good (correct) and bad (incorrect) information is a platform which is doomed to be dominated by the most ruthless, because it is the ruthless people who have no boundaries. Ruthless people do not worry about harming others to get their way. Lies. Fraud. These are but tools in the hands of the ruthless. Does deplatforming cause them harm? Only if they subjectively deem that their lies bring them power. In that case they don't need a platform, they need a therapist.
Any platform created to be all inclusive (Spreely.com, Minds.com, etcetera) will be dominated by the most hateful. There is no way to avoid this scenario if you do not set hard ethical lines which cannot be crossed. I hope these platform providers enjoy taking orders from fascists. Fascists that will tell them what and how to think; which is what fascists do and why fascists (like Nazis) shouldn't be given a platform in the first place. It is a quandary, but it isn't an unsolvable problem.
I'm still on Facebook, for now. They at least acknowledge the existence of incorrect information and harmful social interaction. I'm not happy with providing a platform for ideas designed to kill me. I won't spend time on a social platform that allows them space to spread their lies. Consequently those who voice views about political purity, religious purity, racial purity, promote the lie that life is a zero sum game that requires I harm others to win, these kinds of people and beliefs are not welcome anywhere that I am expected to be. I would ban these people myself. I do block and report these people when I'm given the tools to do so.
Authority might be necessary, but authority need not lead to authoritarianism. The difference between allowing Donald Trump to take office because existing mechanisms put him in position to assume that office, and not allowing Caudillo Trump to violate the law in the name of his whims or his stormtrumper's whims is exactly how that ethical hair is split.
The Trump ads have to go away Google. Now. Not later, now. More generally, I want to be able to remove ads for users and subjects, for causes which can be enumerated to Google as an ad provider. I never want to see the Orange Hate-Monkey's face on any screen, ever, and I definitely am not interested in any fucking thing he wants sell me. So give me the ability to block his and any other content I deem harmful or erroneous with the ability to flag said content for review by responsible authorities, which unfortunately doesn't include the sitting president of the United States. Make this happen, Google or I will start blocking all ads on Android like I do on Windows.
Ménière's disease (MD) is a disorder of the inner ear that is characterized by episodes of feeling like the world is spinning (vertigo), ringing in the ears (tinnitus), hearing loss, and a fullness in the ear. Typically only one ear is affected, at least initially; however, over time both ears may become involved. Episodes generally last from 20 minutes to a few hours. The time between episodes varies. Over time the hearing loss and ringing in the ears may become constant.
The cause of Ménière's disease is unclear but likely involves both genetic and environmental factors. A number of theories exist for why it occurs including constrictions in blood vessels, viral infections, and autoimmune reactions. About 10% of cases run in families.Symptoms are believed to occur as the result of increased fluid build up in the labyrinth of the inner ear. Diagnosis is based on the symptoms and frequently a hearing test.
Wikipedia, Ménière's disease
That description matches up to my experiences quite nicely. I'll take that as a working definition for the subject of Meniere's disease. Feel free to read the rest of the referenced article if you need to know more. That handles the basic introductions, for anyone who might need basic introductions. If you are a fellow sufferer and I sent you here to read this, The rest of this post is for you. I want to answer your questions. That is why I wrote this post. That is why I maintain this post with my current experiences.
The questions about Meniere's and my relationship with Meniere's usually come in two forms. "What symptoms do you have?" is probably asked most frequently because not everyone diagnosed with Meniere's has all the symptoms associated with the disease. Most doctors do not know what constitutes Meniere's and many people could have an incorrect diagnosis from a well-meaning but poorly informed doctor.
The other question I get a lot is "what do you do to combat Menieres?" This question is usually asked because, rather than there being no information available on the subject of Meniere's online, there is a lot of contradictory information about the subject from a myriad of sources; from both non-profit assistance groups and from for-profit websites peddling their own wares.
What I hope to achieve with this post is to cut through the noise of what everyone else is telling you about their opinions and their magic elixirs, and I'm just going tell you about the experience I have with Meniere's and how I deal with treatment for myself. With any luck you'll recognize symptoms and treatment options that appeal to you while reading this.
I haven't done a thorough reporting of symptoms at any point during the life of this blog. I haven't talked much about the disease at all since I first started writing a public diary back in 2005, and that first entry was a compilation of entries made on other forums over the course of several years. I avoid thinking about my disability, a feeling most sufferers probably share. It's uncomfortable to acknowledge such a fundamental difference from everyone else.
I was a hardcore individualist for decades. I prided myself on knowing how to make things from scratch; knowing the ins and outs of the most rudimentary technologies an individual can master. I did this just in case I was ever alone and without the necessities we take for granted, especially today. I treasured this hard-won knowledge. It was my zombie plan before there was a thing called a zombie plan. I'd been collecting that information with just such an apocalyptic scenario in mind since the mid seventies. Between Soylent Green, Planet of the Apes and Logan's Run, was there much hope left for the future? Even Star Trek predicted eugenics wars and near extinction in the time between the 1960's and the future where we could cross interstellar space in the blink of an eye. The apocalypse everyone expected thankfully never came, but I did meet some interesting people in different survivalist circles as the years progressed from the 1970's to the 1990's.
Then came the Fall. Or was it a Spring? Seasonal allergy humor, never mind. Then came the vertigo. That's what happened. Then came the vertigo, and everything changed.
Starting in the year 2002, I began to be subject to regular bouts of rotational vertigo that hit me without warning. These weren't my first encounters with this particular symptom, but it was the first time that a discernable pattern emerged from the noise of my everyday life. My first vertigo attack occurred as a single incident many years earlier, probably sometime in 1984. In that instance I triggered the vertigo myself by accident while trying to clear the pressure in my left ear. I had just started noticing this discomfort, this feeling that my inner ear was swelling up, pressing against the skull from inside the skull, as far as I could tell. I was sitting the shower in an apartment that I shared with a fellow draftsman. Sitting with my painful ear directly under the hot stream of water in a desperate attempt to make what I thought was a blockage in the ear pass down through the eustachian tube. When the pressure finally eased in the ear, the blockage apparently cleared, I found that I was lying down in the shower and so dizzy that I couldn't walk. I crawled to the bed and got in it, afraid that I might have done myself permanent damage. When I woke up the next day I felt tired but no worse for wear overall. Best of all the ear pressure seemed to be gone.
When I first started having the subsequent and almost regular vertigo spells, they seemed to be related to my seasonal allergies and those times of the year (spring and fall) when my allergies had always bugged me. And when I say always, I mean always. As far back as I can remember, I have had allergies. I was treated with allergy shots back in the early seventies, administered by my mom but prescribed by a doctor. I had recurring sinus and ear infections because of these allergies when I was a child. Allergies that I started associating with the annoying pressure in the ear. Distortion of the hearing in the ear that made enjoying any kind of music nearly impossible for weeks and then months at a time. All of these symptoms progressed slowly from year to year. Each Spring longer spans without music, each Fall more trips to the doctor demanding some kind of treatment for the discomfort. And then, as I said, came the regular bouts of vertigo in 20002.
As time progressed the vertigo spells became more generalized and could be brought on by high pressure weather, or just by turning my head the wrong way. These bouts of vertigo seemed to last anywhere from 6 hours to a full day, and frequently caused me to miss two days of work. Towards the end of my work life I was getting vertigo about once a week, making my average work week 3 days long. This kind of attendance pattern does not produce enough work for most employers. I was definitely not working enough to satisfy the architect I was working for then. Consequently I was fired from my last job for being sick too much, even though I accepted the job with the stipulation that I was frequently ill and had only been on the job for eight months.
It was at that low point, unemployed, cash strapped and suffering near-constant vertigo that I sought and was granted disability. Now that I am on disability and free to manage stress for myself, I count myself lucky if I can go a month or two without vertigo. Some years are better than that, some years are worse. You play the hand you are dealt, a mantra I've relied on all my life. This is what I have to work with, I will make the best of it that I can.
However, the vertigo is just the most visible symptom of the disease. There are many others, as the definition I cited above states. I have all of the usual symptoms. Almost as debilitating as the vertigo is the constant tinnitus, a ringing/whining/whistling in the ears which comes close to drowning out normal conversation and makes concentration very difficult. The tinnitus never stops. Sometimes it is loud, sometimes it is soft, and sometimes it causes the affected ear to amplify what little sound it hears, a condition known as hyperacusis, making even the smallest of sounds painful and sending me into a room by myself so that I can keep things as quiet as possible.
Then there is the pressure in the ear that I mentioned previously. Like the tinnitus this varies in discomfort, sometimes a nagging ache, other times a stabbing pain as if some fluid containing vessel in the ear is about to burst. The pressure in the ear is often a precursor to vertigo. If I get a metallic taste in the mouth with a sudden surge of pressure, I hit the medication immediately. Paying attention to how I'm feeling on any given day is how I've managed to keep the vertigo to a minimum through the years of disability.
I have slight dizziness and disorientation almost constantly. Disorientation brings on the brain fog on bad days, more pronounced after vertigo attacks. There are good days and bad days, but turning corners always carries the risk of colliding with objects I know are there and thought I would miss. The last symptom that I can tie to Meniere's is a seriously vicious migraine headache. In 2014 I was getting them about every 4 days, but a trip to the GP where I finally admitted the headaches were that frequent got me a daily script that has reduced the migraines to something I only enjoy during allergy seasons.
On February 9th of 2018 at 6:30 in the morning I went bilateral with Meniere's. Bilateral Meniere's means I have identifiable hearing loss in both ears. Meniere's disease produces hearing loss in predictable ranges that doctors can see and diagnose. I know the exact time that I went bilateral because that was the moment when my mother was dying in my arms. Trauma? Stress? Yeah, there was a bit of that. Two of my biggest triggers for bringing on the symptoms of Meniere's. When I went to see the ENT later that week, she wanted to make sure that what was occurring was not something they could treat, so I went to visit a rheumatologist to insure that what I was suffering from was not autoimmune inner ear disease. A few blood tests later and that was ruled out. Sadly, I still have Meniere's. Damn.
Going bilateral has meant that I have more frequent bouts of vertigo again just as I did when I was first diagnosed back in 2003. The years of experience with this disease have made the trials of bilateral Meniere's easier to deal with, but the symptoms take their toll no matter how well you can cope with them.
The Ear, Nose and Throat doctor (ENT) informed me in 2015 that the hearing in my first affected ear (left ear) is about half of what it should be and is still getting worse. That is apparently the point that most sufferers opt to have procedures done in order to alleviate symptoms. There are a couple of interventions available to me, but neither of them offer better than 60% chance of long-term relief, so I'm not jumping up and down to have any of them done. Gentamicin injection into the cochlea is the procedure he wanted me to do. I will not be doing this procedure unless the vertigo gets worse; as in, as bad as it was when I was a working stiff. There is also a surgical procedure or two that will interrupt the signals from the affected ear. Those procedures will make you completely deaf in one ear, and the Gentamicin can also make you deaf if not done properly. This is too much risk for too little reward based on the situation I am currently in. My going bilateral rules out doing any of these procedures now unless medically necessary. The chance of going completely deaf is a risk that you want to avoid if at all possible.
I've only had two surgeries in my life. When I was a child I had my tonsils removed. It was a common practice back then (1973) for children having extreme allergic reactions and associated throat swelling to have their tonsils taken out. I wasn't even the only one in my class in the small town I grew up in to have had this procedure performed on them. Most recently (2003) I had a procedure done that corrected a deviated septum and reduced the turbinates in the sinuses. Since allergies were so bad for me as a child, and allergies seemed to be a big trigger early on in the progression of my Meniere's, it seemed like a logical step to see if fixing the breathing problems might not alleviate the Meniere's symptoms. Sadly this has not turned out to be the case, but has apparently reduced my allergies and the number of sinus infections I have to suffer through. I will never forget the first time I went swimming after the surgery and got water in my sinuses. Before the surgery it was a major struggle to get the sinuses to clear. After the surgery I just tipped my head forward and the water ran out. "so that's what working sinuses are like!" I exclaimed to the amusement of all present.
I have tried most of the alternative medical treatments that I didn't deem outright dangerous to try. Essential oils. Myriads of supplements. I tried far too many different things to name here, even if I could remember them all, and I'm pretty sure I can't. Mom was into alternative medicine and she would show up every few months with some new thing or other for me to try. I dutifully tried them all, to no real effect. It was at about this time that I started to question why I took things like daily vitamins. One by one I discontinued the various supplements I was taking until I had discarded them all as producing no noticeable effect. I even stopped taking vitamins for about two years until I started developing unusual skin problems. I don't know which vitamin I'm low on, but chewing a daily gummy does seem to keep the skin working like it is supposed to, so I keep taking them. One of these days I'll remember to ask the dermatologist which vitamin I might be needing, then the vitamins will be one more prescription, just like everything else I take.
I avoid stress and allergens as often as I can. That means getting enough sleep first and foremost, since stress is directly related to the amount of sleep that you get versus how much you need. This is one of the hardest things to do in this culture, the US culture, justify getting a full night's sleep. I can and do sleep for longer than 12 hours on occasion, especially when I've had a particularly severe vertigo attack. I have found that 8 hours is more than enough sleep if I can get those hours from 10pm to 6am, but the problem is getting to bed before midnight (as I'm sure most people will agree) and staying asleep for the full 8 hours. I was diagnosed with sleep apnea and I started using a CPAP machine in 2016. That has shortened my sleep cycles to a more predictable eight to ten hours and I wake up feeling like I've slept well for the first time since I can't say when.
Probably the single most beneficial behavioral thing I've done aside from sleeping more and getting the CPAP is I stopped sleeping on a flat surface. I always try to sleep with my head elevated. A touring musician who is a fellow sufferer (I wish I could remember her name) suggested sleeping with the head elevated because fluids tend to pool in low areas of the body. I don't know how true that is, but it does seem to help. I tried wedging the head of the bed up, and that seemed to produce even better results than just stacking up pillows. Unfortunately the wife hates the heads-up sleep position, so I begged an adjustable bed from a friend who had one in storage. I've been sleeping on that bed ever since, and I credit it with reducing most of the inner-ear pressure that I used to experience while trying to sleep. If you don't believe me, try it. It really can help.
I walk everyday, or as close to everyday as I can manage, regular exercise (sadly) being another facet of stress reduction. Walking puts me afoul of my allergies for almost anything that grows, so I have to do some of it indoors on a treadmill. I prefer to be outside whenever I can manage it, so allergy medications are something I tend to take frequently.
There doesn't appear to be any real treatments for the tinnitus. Mostly it is a matter of enduring the constant sound which does contribute to the brain fog, or masking the sound with other sounds. I find Rainymood, suggested by a redditer, works best for days when the tinnitus is incredibly annoying. Most other days I just endure the constant barrage. You can train yourself to ignore the sounds using various methods that you may or may not find useful. I've never stumbled across anything that worked for me, and there have been many promises made over the years to reduce your tinnitus! promises that remain unfulfilled.
I have the least to say about tinnitus, I think, because hearing loss and the accompanying tinnitus stole my enjoyment of music from me. When the songs stopped sounding good in my ears, I simply stopped listening to them. I think that has been one of the hardest things to cope with, almost as hard as not being able to work. Music defined my life, as it seems to do for most people. My music appreciation stopped in 1999. I can't recall a single new artist that I have followed since Prince. That, in music years, is several lifetimes.
I was already avoiding salt because of a hypertension diagnosis, and my hypertension medication contains a diuretic which was the first medication suggested by my ENT. Salt can increase blood pressure which increases stress. Stress is a major trigger. Caffeine is something I try to avoid because it disturbs my sleep, not just because it makes me dizzy. Caffeine can also increase stress. Anything dietary that causes stress can cause Meniere's symptoms, so just avoiding things you think cause you stress can make your symptoms seem less noticeable. Don't rock the boat and it won't capsize. this, as usual, is easier said than done.
Other than avoiding salt and caffeine as much as possible, I don't really follow any other dietary restrictions or fads. I live in the South so everything comes fried, which I'm then compelled to avoid because of cholesterol concerns (hypertension) the resultant impact of culture and health problems produces a tofu eater in the land of chicken fried steak, but then all of Austin is a little bit weird like that.
Vertigo, the most debilitating symptom, deserves it's own heading. This is a key point in understanding Meniere's and its treatment; nearly all the procedures recommended by doctors are designed to stop the vertigo. The vertigo is thought to originate within the labyrinth of the inner ear, so most treatments are centered around that part of the body. From the most drastic to the least invasive, nearly all of the surgical treatments silence the affected ear, permanently. Some of the less invasive will leave you with some hearing in the ear, but their efficacy is highly questionable.
Vertigo treatment for me started with Meclizine (Dramamine) This is what I took in 2003 when I was first diagnosed. I still take it on occasion when I feel dizzy, but not spinny. There is a difference as any Meniere's sufferer can tell you. If I'm having an active vertigo attack and it has already made me nauseous, I take Promethazine. If the vertigo doesn't respond to the Meclizine (Which happens. Frequently) then I take Valium to let me sleep or Xanax to relieve the anxiety of the attack (do not take Valium and Xanax together. The combination is deadly) All three of those drugs require prescriptions in the US and are controlled substances which makes them much harder to get.
Flying is the fun part. I have to be medicated to fly. I used to take Promethazine and Valium, but Xanax alone is sometimes enough of a treatment to keep the vertigo at bay. I much prefer the Xanax because I don't always go to sleep when I take it, but I have to have supervision because Xanax makes me a bit fearless (anxiety reducer) while not actually giving me any better balance. I'm just an accident waiting to happen then, but at least I can sit through a flight without freaking out at every movement, getting queasy and vertiginous.
I have another secret weapon for managing flying. Cinnamon chewing gum. I always travel with a pack of gum. I have always chewed gum while flying since I first went up in a Cessna with my dad as a child. If your ears bother you because of pressure, chew gum. Far more useful than earplugs.
I heard about Serc or Betahistine from Menierians in online forums years ago. This is a drug commonly prescribed for dizziness and specifically prescribed for Meniere's disease in the UK and a good portion of Europe. I was initially dubious that the drug would have any effect since it had been trialed in the US previously and found to be no better than placebo at preventing Meniere's symptoms.
In the summer of 2017 my ENT's office took on a new doctor and I was referred to her for my annual Meniere's symptom review and prescription renewal. She suggested a trial of Betahistine during my first consultation with her. As I established earlier in the text, I don't reject any suggested treatment out of hand (any treatment that isn't damaging or potentially life threatening. I could tell you stories, but I won't) I decided to give Betahistine a try. The drug is not available in the US under its European brand name, Serc. It has to be compounded, and as a consequence of this it isn't on the average health insurance formulary. This makes Betahistine more expensive to take and harder to get, but at least it was legal for me to try it.
As of this writing (January 2019) I have been taking 16 mg of Betahistine three times a day for over a year. While I can't say it is doing everything I had hoped for, it is doing something. My head seems clearer, my concentration sharper. The tinnitus continues unabated but the ear pressure is less noticeable. I still get occasional bouts of vertigo but they seem to last for shorter durations.
Intratympanic Steroid Injection
In the Spring of 2018 I started getting steroid injections in my ears. Most frequently this has been the left ear, although I have had injections in both of them over the past nine months. Intratympanic injections were originally suggested as a possible remedy to the hearing loss in the right ear immediately following the diagnosis of bilateral Meniere's earlier that Winter. The hearing test following the right ear injection didn't show any major improvement, but I was impressed with the pressure relief that I got from the injection in the right ear. I was so impressed that I insisted the doctor inject the left ear just to see if it produced any noticeable effect there. It did, and I have had her inject the ear a few more times since then due to repeated battles with vertigo and/or pressure in the ear.
My last injection (December 28th, 2018) illustrated the downside of this treatment for me in pretty stark terms. You are not supposed to swallow if you can help it for the first few hours after getting an injection. You shouldn't attempt to pop your ears or force air into your eustachian tubes (this is a frequent habit with Menierians when they are trying to get the pressure off of an affected ear) for several days, and really shouldn't even use straws or swallow hard for that period of time.
Well, I screwed that up about ten hours after the injection and somehow got air up in the ear that caused the ear to pop. What followed was about three days of bedridden vertigo and constant medication. It's been almost a week now and I'm finally feeling more like what passes for normal these days. The pressure is still off the ear and the world doesn't turn inside out when I put pressure on the eardrum from outside. So the injection did what I wanted it to do, even though I screwed up the post-treatment regimen.
I had the ENT puzzled with that symptom, something I'd never noticed before myself. When the left ear is acting up, I can stick my finger in the ear and wiggle it, and my body feels like it changes shape. It feels like my right shoulder is getting longer and my right leg/hip is moving. It's the weirdest damned thing I've ever felt, and I've only started noticing it since altering my allergy regimen. I may have to re-introduce some Guaifenesin into my regular treatment in order to keep the inner ear fluid pressure down. I'll try testing that the next time I notice the weirdness in the ear. The ENT was suggesting putting a tube in the eardrum to see if that took the pressure off the eardrum, even though the eardrum does not appear to be under pressure. I may try that treatment at some point in the future. It is reversible, so isn't something I will have to live with forever once done. Test and retest. Check and verify. It gets tedious, but it's the only way to know for certain what works and what doesn't.
A Word of Caution. A Word of Hope.
I make a lot of drug recommendations in this blog entry. Having suggested drugs for various treatments, I really should also offer the following caution; these drugs all have different effects for different people, and this fact can not be overstressed. These medicines work for me and I'm thankful that they do. Treating Meniere's means finding your triggers and then doing your best to avoid them. My triggers seem to be stress or allergy related. It will be a trial and error process finding what will work for you. Here's hoping it takes less than a decade for you to find your feet again. It will happen, it just takes time. If you find that a drug I suggest doesn't work for you, try a different one. Keep working at it till you find a solution that works for you and then stick to it. The important part is to not give up.
When you start reading through the treatment page on the Meniere's Disease Information Center website (a resource that is now defunct except as an archive) it becomes very clear that most sufferers will try anything to stop the vertigo. If you've ever been afflicted with a Drop Attack from rotational vertigo, and can imagine that sensation continuing for hours and days at a time, you would understand why sufferers are willing to try anything to make it stop, even drugging themselves (myself) to unconsciousness for days at a time to avoid the symptom. Unconsciousness is a mercy when consciousness is a never-ending torment of spinning. Spinning without end. Don't let this disease kill you. Don't let it win. Don't hide from life for fear of that next attack.
If you are reading this because you to have Meniere's, then I am truly sorry. I have often said that I wouldn't wish this disease on my worst enemy. Being disabled has made me question many of the beliefs that got me through life before I was struck down by Meniere's. Most of the things that I thought were real as a healthy person turned out to be delusion once I became chronically ill. Problems that I thought were paramount when I was healthy now seem trivial. Services that I complained about paying for are now essential to me and my family's survival. Seeing life from this viewpoint has made me a better person, but there has to be easier ways of getting access to this kind of insight. Ways that don't rob you of hope, of purpose. What can feel like forever, from the inside.
I miss architecture and drafting nearly every day. Those were my purposes in life prior to this debilitating disease. More than a decade later, I still have dreams involving architecture. Admittedly, the last dream involved all my drafting tools being ruined because they had been piled in a trailer for ten years, but still the dreams persist. I have them almost nightly, reliving events from my productive past only to wake up to the reality I face now.
So if you are a fellow sufferer, please know you have my utmost support. We all need people we can rely on now, because there are times when we really are helpless and won't survive without them. While that has always been true of everybody, most people go through their lives never admitting this fact. Cherish those around you who are there when you need them. That is what it truly means to be human.
The Tide is Turning is what I felt on discovering that the Democrats had won such a major victory in the midterms. It took a few days to sink in, but it is a sentiment that I echoed to many people who lamented that the Senate did not flip to Democratic during the midterms. The Senate had almost no chance of flipping, as the number crunchers over at fivethirtyeight.com tried to point out, repeatedly.
The Tide is Turning is the title and refrain of a Roger Waters song, a tribute to Live Aid. I was reminded of Live Aid when I went to see Bohemian Rhapsody recently. I had never looked back on that event, and it's music, as having been such an influence. Watching the recreation of Queen's performance at that event as portrayed in the film, I was struck by how quaint it was. How quaint it was that the world got together and raised funds for the starving children in Africa back in 1985.
Quaint that we thought we could just change the world with that one event. Here we are, 33 years later. None the wiser, and one whole hell of a lot more cynical. And yet. And yet.
The midterm results show that the cynics are passing into irrelevance once again. There is no other way to read those returns. The largest shift in the membership of the House of Representatives in a generation. A Democratic shift all through the body politic, across all the states and the federal government. The tide truly appears to be turning once again, and it is about damn time too.
I remember listening to a copy of Radio K.A.O.S. shortly after its release. This song brought me to tears even then. Raised on M*A*S*H, self identifying with the hippies and long hairs more than I ever did with the high and tights of my time, the notion that technology could be taken out of the hands of the military and used make human lives better was a dream I most fondly wanted to see come true.
It still hasn't come true, but the first sense of nostalgia that I've ever experienced, a longing for the good ol' days, days that might actually have been better, was watching Rami Malek embody what it was to be
Freddie Mercury on screen. Watching him perform at Live Aid and realizing that Queen's performance at Live Aid would go down in history as the peak of their popularity. That Live Aid itself codifies what it means to truly be human, to care about others to such a degree that you would give completely of yourself to save them. I just wish that we had gone on to take AIDS seriously enough that we could have saved Freddie Mercury.
But the world is changing. Change holds hope. Which is good, because frankly I haven't had much reason to hope since 1999.
Satellite buzzing through the endless night, exclusive to moonshots and world title fights. Jesus Christ imagine what it must be earning.Roger Waters, Radio K.A.O.S., The Tide is Turning
Tuesday I woke up, dizzy again. This time dizzy and with chest congestion. I had taken the CPAP mask off to answer the phone, and simply neglected to put it back on at about 8 am (trying to schedule appointments with mundanes means being clear and attempting to be coherent at 8 am when they return calls) so when I finally got out of bed at noon, I had a nice wheeze going and a tickle in the middle of my chest. Needless to say, I took a round of allergy drugs and my regular daily medications, put the mask back on and went back to sleep.
When I woke back up again, the tickle was gone, the dizziness was lessened and I wondered about the cause of the dizziness since the mask filters all my breathing air. I tried wearing a particulate mask around the house for awhile and that seemed to help, but then I had to talk on Discord for the guild raid that night, and the tickle and congestion returned.
Funny thing is, I can stick my finger in my left ear and trigger the inside out vision for a brief second or two. It makes the dizziness much worse, to the point of almost blacking out. The right ear, even though I have bilateral (both ears) Meniere's, does nothing to my equilibrium. That is a puzzle.
Allergies? Barometric pressure? Meniere's flaring up? I don't think it's the latter because the dizziness is wrong. I've already gone to the ENT once this month, so I'm visiting the GP today to see if it's something he can figure out. If not it's back to the ENT for another needle in the ear and the nasty taste of drugs in the back of my throat for two weeks. Fun. Fun. Fun.
...I mention all of this because I decided that this week was the week to try communicating with people, and I can tell that my writing is less than coherent. I'm hoping the above was coherent. Who knows? I won't for at least a week. Also, I'm in the middle of reorganizing my website and my blog, as well as revisiting the wisdom of my presence on several social platforms and I will be leaving more than one of them, permanently. So I'm largely incommunicado and unwilling to compose text in my normal fashion because that has lead to a lot of time wasted trying to recover lost work when things go sideways. (see my last post) and what little conversation I am required to engage in is probably incoherent to at least one side of the conversation. Maybe even both. I'd really like to get away from the problems that started back in mid-August. This is getting old. Really old.