Living with Menieres

Brain Fog as your brain just gets weary of compensating for the poor signals coming from the ears

Meniere’s can logically go through three phases according to the medical text books, though nothing is predictable with this terrible disease.

It starts off with sudden and unpredictable, debilitating vertigo attacks lasting many hours but as it goes through stages 2 and 3 then the problem shifts as vertigo attacks decrease but your hearing and balance can be significantly reduce.

The classic three phases on Meniere’s as described in the medical text books. Real life is not so clear cut

Meniere’s gives and takes both at the same time.

Meniere’s givers and takers

As in this poster from the Meniere’s Awareness Project.

Below is a description of what it’s like to have Menieres from a fellow sufferer Tina McDonald. She had originally given permission to her doctor, Dr. Alec Salt to use this description on his website, though this is now not shown. Tina has given us permission to publish her description and a request that if anyone copies it, to please keep her  name with it so that her Social Security Admin knows for her next disability redetermination that yes, this is what HER life has been like with the disease

Re: Life with Meniere’s Disease – Before You Judge Me

A revised version for my MM friends after two nightmare emergency room visits with some new helpful hints.

Life with Meniere’s Disease by Tina McDonald

“Before you judge me on one of my good days, you need to understand what one of my bad days is like”

Tinnitus – imagine having a headache caused by a fire alarm ringing or a bee buzzing or an emergency air raid siren in different tones in your ear continually for a long period of time. You can’t hear anything but that alarm or bee – It drowns everything else out.

Vertigo – Now imagine yourself as really drunk or with the flu at the same time as the fire alarm is going off. Now imagine that with these two things, you’d be dumb enough to get on one of the super roller coasters that does loop-de-loops or the amusement park rides that spin in two different directions at the same time. I’m not that dumb, but unfortunately I have no choice in feeling these sensations. Currently, I have at least one of these attacks every every few weeks, and I fall several times a month, but it’s better than having the attacks the every day I was having for a while. I can only pray that this holds out.

Oh, and then there’s the really fast and furious vertigo attacks, referred to as drop attacks, (otolithic crisis of tumarkin) that are especially scary. One second you are standing, and the next you are lying on the ground.

I’ve had a countless number of these attacks, and unless you happen to be at an ENT’s office, even medical personnel will usually assume that you are having a seizure or have passed out. At least with the other vertigo attacks, you can kind of try to position your fall to avoid such things as hitting your head, or breaking your neck. Drop attacks bring you down at lightning speed, with no warning, and tend to give you the nastiest of injuries afterwards. Luckily none of my close calls with glass windows have been drop attacks yet. I have learned to ask for help to position furniture so that I don’t go anywhere near a window if I can help it.

The “regular” vertigo attacks can last from several minutes to several hours if not days. I can’t keep food or water down, I can’t walk, and in order to get out of bed to go to the bathroom, I have to crawl like a baby on my hands and knees. The movement makes me so ill, if I’m able to crawl back to bed, I’m covered in sweat from exhaustion. Otherwise, I keep a pillow and a blanket at the bottom of a linen closet in the bathroom so that I can pass out lying across the bathroom floor. I end up sleeping for days after one of these attacks, only getting out of bed to go to the bathroom or to get something to drink, if I think I can keep it down. I have to call my family to see what day it is when I wake up, and check in at least every other day so that my mom doesn’t panic. That is, if I can hear.

You see, this disease while playing havoc with your balance and
equilibrium, also reeks havoc with your hearing. It wouldn’t be so bad if the hearing loss was constant and predictable. But no, one hour I can hear conversation fairly OK, and the next I can be virtually deaf, then the next day I can hear again. The hearing loss can fluctuate daily or hourly, but is usually progressive, and many with the disease end up severely hard-of-hearing or deaf. Now, how do you call for help if you’ve just fallen in a vertigo attack and can’t hear? How do you talk to paramedics, ER doctors, and ER nurses who think that your faking it by “suddenly” not hearing and walking when you were able to at the beginning of the visit?

Twice now, I’ve gotten so frustrated with emergency room personnel that I’ve tried to crawl out of the ER to find another place in the hospital to curl up into and been placed on a mental health hold because a “normal person” wouldn’t be crawling. This is despite the fact I carry a very thorough list of my medical conditions and a very short summary of what they should do if I can’t hear or have vertigo. When I struggled, I was placed in restraints, and then when I was allowed out of restraints, was given round the clock sitters to monitor my “progress” who insisted on keeping a light and the TV on in my room at night because they had to make sure THEY stayed awake. Apparantly the part where I’m supposed to be able to rest and recover from the vertigo rather than have it exacerbated doesn’t matter when you are on a mental health hold.

I’m forty-one years old and need to wear one of the “I’ve fallen and I can’t get up” buttons they target for seniors, not to mention having to use a rollator (wheeled walker) most of the time. The little button is a life-saver, because my severe life threatening allergic reactions like to trigger major Meniere’s episodes. Oh, and just a hint, riding backwards in an ambulance during a vertigo attack will cause the vast majority of people with vertigo feel a HECK of a LOT worse, so you might want to ask for the anti-nausea meds first thing if you see EMTs or paramedics!

Even on a daily basis, your mind is so confused by the signals its getting from your ears that your balance sucks. You run into things constantly because you can’t balance well enough to avoid walking into things, or your mind is telling you the object is a couple of inches from where it really is. I don’t know whether to laugh or cry when someone teases me about being such a klutz. I could make the Keystone Cops look graceful. I get anywhere from 20-50 bruises on average a week. I fall to the ground several times a month.

I also have days that my coordination just doesn’t seem to be together. I’m carrying something, and all of the sudden I drop it because my brain seems confused as to whether my hand is really attached to my body. This isn’t really handy to do in the kitchen. I’ve gone through several sets of dishes. I sometimes miss a step and fall because of the feeling that my legs are not quite part of me and I have to focus on them to realize they are there. Apparently this happens because the part of your brain that recognizes parts of your body as belonging to you is the parietal brain lobe and it sits right above your ear, so if the nerves around your ear are inflamed, it can press on this part of the brain, or send the wrong signals to it (I’m not quite sure which), and you can lose coordination.

Ironically, the few high frequencies I don’t seem to have a hearing loss in can sound extremely loud, unbearably so. When a baby cries, an alarm goes off, or a microphone gives off feedback, I’d be willing to climb up a wall to get away if I thought I could make it. This symptom is called recruitment.

The disease also plays tricks on you vision. For some strange reason, the nerve that goes from your inner ear to your brain also controls some of your eye movement. Your eyes can twitch or bounce constantly (nystagmus), making focusing on objects, much less print, extremely difficult at times (called osillopsia) . Your eyes tend not to be able to “track” movement at the same speed, giving you double vision, and a bad headache. According to my neurotologist, the best solution for this problem is to play those horrid video games that used to make me ill if I just glanced at the computer screen when my nephew was little years ago.

You can get confused easily and your memory and concentration aren’t reliable, even when you aren’t suffering from a concussion because of one of the many falls you endure. This symptom is what some people with the disease refer to as “brain fog”. Many of them originally were afraid that they may have a brain tumor or Alzheimer’s disease because it can sometimes gets so bad. Finally they find either a doctor whose very knowledgeable regarding the symptoms, or they happen to ask someone else with the disease, and find that this too is a symptom of this blasted disease. Oh, and no, we aren’t imagining it, there is actual medical documentation on the “cognitive aspects” of vestibular disorders.

Now try to imagine living with this disease never knowing when one of these periods of tinnitus, vertigo, hearing loss, double vision, lack of coordination, recruitment, disequilibrium, or “brain fog” is going to hit, or how bad it will be. At least with being drunk or riding an amusement park ride, you know what’s causing it, and you can make the choice not to do it again. With this disease, there’s very little warning if any for these attacks, you don’t know what’s causing it, and there’s no cure – only devices, surgeries, and some medications that can somewhat help alleviate the symptoms. And some of the surgeries are so radical, you think they came from a horror movie about a mad doctor. And yes, things have gotten so bad that I’ve desperately agreed to two of these surgeries, one on each ear, that thankfully didn’t leave me with the rather unnerving risks of total deafness, spinal fluid leaks, meningitis, encephylitis, mastoiditis, choleastoma, facial paralysis, and even worsening vertigo.

Understandably, anxiety and depression seem to go hand-in-hand with Meniere’s for many sufferers. We often ask how much worse can this disease get? For some strange reason, doctors aren’t very willing to give out worst case scenarios, because they don’t wasn’t us to get depressed when there is still time for us to be proactive. I finally got mine to give me the bottom line. Being totally bed-ridden in a nursing home from either the vertigo and/or injuries from the falls is definitely an incentive to agree with the above radical surgeries when you are having severe attacks virtually daily for five months straight. So I’m now in a fully accessible apartment to try to retain my independence for as long as possible. Again, very, very few of you will ever experience daily attacks for this long.

Now for those of you without this disease, decide if you think I’d be able to do the same things you do, not to mention on a regular schedule. For me, there’s no way. I’m being upfront about my limitations. I try the best I can at living up to my full potential. Could if you were in my shoes? They think now that Van Gogh
suffered from this disease, and he cut off his own ear trying to escape it. I’ve known one woman online who willingly let them “roto-router” out her inner ears so she’s deaf and unable to walk to escape from the vertigo.

Yet on my not-so-bad days, if I try to “act” like nothing is wrong, I may look like a totally healthy, able-bodied person. You ask me “why can’t you bend down – pick it up – lift it – drive- get a job – walk without a cane or walker” Its because I know these things can either bring on an attack – I couldn’t do them on a regular schedule because of the symptoms – or if I did do them, I could put myself and others in jeopardy if I should have an attack. You have to realize that with my friendship, love, dedication, and loyalty comes the fact that I can’t decide when I’m going to have a bad day, and the more stress I’m under, the more likely I will have a bad day.

Please don’t judge me unless you’ve been in my shoes.”

A note to new patients – my case is an extreme one of bilateral Meniere’s. It is exacerbated by many other medical problems, especially by severe allergic reactions. The above description is not meant to scare you or infer that this is what you will continue to have with regularity for the rest of your life, since most people with the disease do not have nearly as many attacks or as severe as attacks as I do. Many sufferers do reach a stage called “burnout”, where the most debilitating part of the disease, the vertigo, reaches a stage that it stops or at least doesn’t get any worse. Alan Shephard was able to fly to the moon after being diagnosed with Meniere’s and having the endolymphatic shunt surgery.

Again, for people who have just been diagnosed, I’d like to point that I and the other lady I mentioned who took such drastic action as the “roto-router” approach are members of the “hard-Luck” club in that we have a very severe form of the disease. Chances are you won’t end up dealing with a walker, or a personal alarm, or that you will have drop attacks. You might however want to look into ways to lessen the impact (such as grab bars or moving to a ground level apartment or single story house) BEFORE you need them, because if you wait till you do need those things on a steady basis, then you will find it terribly difficult as I did.

It is, however, meant to let you and your loved ones know just how hellacious these symptoms can be on what you may well consider some of the worst days of your life, and plan and prepare for it. That means at the very least providing you with essentials to get by with a couple days (ie, cups for & or bottles of water or electrolyte solution, toilet, moist towelettes, toothpaste/brush, pillow, blanket, etc) on every level of your home, especially if you live alone, or possible moving form somewhere with a lot of stairs to something on a single level at either ground level or with a RELIABLE elevator. Get a handicapped toilet for when you fall and possibly sprain something. The added height of the porcelain princess also helps keep your head at a steady level you can stay in much more comfortably as you are heaving over it. Get grab bars in the bathroom by the toilet, shower and tub. You can screw a wooden board or a piece of Corian backsplash (for wet areas) to the walls to deal with older less uniform stud walls, and then screw the grab bars to that. Think about getting a stool for the kitchen (usually bar stool height) so that you can prepare and cook if need be when you are too wobbly to stand for very long.

Second to last and second to the most important – Get a landline phone (not VOIP) in every room where you can get to it if you are crawling. Lastly and the most important – Get the door to the toilet & bathrooms to swing outwards, or take it down and put up a curtain with a tension rod! Trust me, I’ve been there, paramedics can’t help you very well if you can’t call them or have fallen in the bathroom and have hit your head and gone lights out for some time AND have just blocked there entrance to the powder room. You waste valuable time having the fire department cut out the door rather than by being prepared in the first place so you can’t get yourself trapped, especially if you have any other medical condition. The bathroom is the most frequent room in the house for falls, and also the room where you will receive the worst injuries.

Please, please, get a letter from your ENT like the one below and carry it with you at ALL TIMES detailing the fact that your hearing can go like a drop of the hat, and that crawling for you is the safest mode of transporting yourself during a vertigo attack. Wear an emergency alert bracelet or necklace with HOH (hard of hearing) and VERTIGO on it. And carry a list of your medications, allergies, medical conditions and surgeries, since you miay not be able to hear medical personnel’s questions and may be unconscious if you fall.
To whom it may concern,

This letter is to document that _____________ has Meniere_s disease (or other disease) and this disorder is associated with episodic spells of vertigo than can be quite severe and last for several hours. Meniere_s disease (or other disease) is also associated with balance problems and hearing fluctuation which ________________ has objectively demonstrated. It is also notable that exacerbations of other health problems can bring out the spells; certainly during these spells he/she is at increased risk of falling, and _________________ has indicated that he/she frequently crawls during these attacks for safety sake rather than attempt to stand.

We have audiograms which shows that __________________has had a mild/moderate/severe sensorineural hearing loss bilaterally at his/her worst of _______ decibals. This is the level you would no longer be able to hear a __________ machine unaided. Frequently, such hearing loss will occur during the vertigo spells, perhaps at even greater loss during an emergent exacerbation of this condition or of other health problems. During such times, his/her hearing my suddenly decrease and it would be necessary for anyone trying to communicate with him/her to speak loudly and clearly quite close to him/her, or if he/she still indicates he/she could not hear, writing in very large print in magic marker would be advisable.


______________ MD
For family, friends, and doctors, there is an easy way to personally experience a pseudo MILD Meniere’s attack if you have a spinning office chair, a PC, and MS Windows Media Player. Pick a heavy metal or rap album to mimic the blood pulsing in your ear at full volume, and click on “Now Playing” then “Visualizations”, then “battery” then “cominatcha” while you hit the play button. Then stare at the screen for a while, Then rapidly swirl around in an office chair a few dozen times and try to stand. Ask someone beforehand to come in and say something to you in their normal voice and then leave the room. Now imagine going through that for hours or days,

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