A Few Words...

What is written here is my opinion and personal experience only. I am not qualified to give advice - medical, legal, or otherwise. Please be responsible and do your own research regarding treatments, diets, doctors, and alternative therapies.

Thursday, August 7, 2014

The Weird and Seemingly Secret Symptoms of Meniere's

I have weird symptoms that I am convinced are absolutely related to my Meniere's disease.  Over the years, I have asked all of my doctors about them and in almost every case, I get no more than a weird look and a shrug of the shoulders from them.  I have also asked fellow sufferers the same questions and, in many cases, I get a yeah-me-too, response.

Let's start by reviewing the standard definition of Meniere's disease.  In a nutshell, once all other causes, such as a brain tumor, have been ruled out, there are four "official" symptoms which will put you in the Meniere's disease camp: episodic hearing loss, usually in the lower frequencies, aural pressure, tinnitus, and vertigo.  When I go back and read about Meniere's disease on just about any medically-valid website, the description and prognosis are so sterile and practically benign that it's almost laughable.  For me, Meniere's has been so much more than these four symptoms.  Things have come and gone, but over the years I have also experienced the following:

Frequent Urination
I don't seem to get this anymore, but I used to get it every time the aural pressure would build up in the hours leading up to a vertigo attack.  After doing some research, I concluded that a possible explanations is that as the endolymphatic sac (ES) becomes swollen with fluid, the aquaporins on its surface will send signals to the brain to decrease the production of antidiuretic hormone.  This causes diuresis and I guess is the body's way of responding to the SOS being sent out by the ear that it's fluid overloaded.  This would often persist through most of a vertigo attack, as well.  As if it's not bad enough to be spinning so violently that I cannot possibly stand up, much less walk to the bathroom, I now had to pee like a racehorse every 30 minutes!

Sinus Pressure and Inflammation
There is some validating evidence in the literature that people with Meniere's disease are more likely to experience environmental and food allergies.  The leading expert on this phenomenon happens to be one of my doctors, M. Jennifer Derebery at House Ear Clinic in Los Angeles.  She is adamant that she doesn't believe that allergies cause Meniere's disease, only that there is a correlation.  Now she didn't personally tell me this, but if you've read my previous post, you know that there is some evidence to suggest that Meniere's disease is in fact one of immune dysfunction.  So, could it be that this dysfunctional immune response lends itself to the development of allergies or allergy-like symptoms?  Anyway, for the first few years, I kept telling any doctor who would listen that my sinuses often felt swollen and inflamed, at times even tingling, the sensation extending into my ears.  Each doctor agreed that they could visualize this inflammation when they looked in my nose and they threw different drugs at it, namely nasal steroids and a host of allergy medications.  The nasal steroids often temporarily helped and Claritin seemed to take the edge off, but nothing really made much of a difference until I started allergy shots.  The weird thing is that the first allergist I saw tested me for well over 30 allergens and could not find one thing I would react to.  He was as frustrated as I was because, like all the others, he could see that my nasal membranes were really inflamed.  Ultimately he named it 'nonallergic rhinitis' and sent me on my way.  It was shortly after this that I was referred to Dr. Derebery.  Rather than the standard scratch tests most allergists use, she injects small amounts of allergen solution under the skin, just like a TB test, in varying concentrations in an effort to elicit a reaction.  Testing in this way, she was able to identify 5 or 6 things that I seemed to react to, including mold, and from there I began allergy shots.  With time, they significantly alleviated my sinus inflammation.  I mention the mold specifically because I believe all of my problems began with a persistent exposure to mold about six years ago.  Other sufferers have reported a similar experience with a large mold exposure in the months leading up to the onset of their Meniere's.

The Absence of Infectious Illnesses
The literature has shown that people with Meniere's disease have an increased incidence of having one or more autoimmune diseases, such as rheumatoid arthritis, lupus, multiple sclerosis, Hashimoto's disease, Sjogren's, and others.  Meniere's disease itself is not an autoimmune disease.  While, knock on wood, I don't seem to have any other chronic conditions, I have made an odd observation in the past five years: I have not had one single cold, flu, or other known viral infection!  This is amazing because during this time, all three of my kids were in elementary school and constantly passing around the germ du jour.  Most recently it was hand, food, and mouth disease.  Ugh.  Even my husband catches a cold once or twice a year.  But not me.  I might feel like I'm fighting something off for a day, but it has never developed into full-blown illness.  Before Meniere's, I got the usual number of colds, tummy bugs, and even a couple of sinus infections, but that all seems to have changed.  My theory is that the type and degree of immune dysfunction causing my Meniere's symptoms has somehow protected me from viral infections.

GI Issues
Since the very beginning, I have felt like my body is fighting off a chronic infection.  This is evidenced by the chronic episodes of exhaustion and fatigue, but also the fact that I often have "unusual" bowel movements.  Sorry for the grossness factor.  I happen to talk about poop in great detail on a daily basis with my patients at work, but I appreciate that it's a sensitive subject for many.  I don't have diarrhea, per se, but it's not normal like it used to be either.  Most days it's just once first thing in the morning, but when my ear is acting up, it is rather urgent in nature and really just not anywhere near normal.  Like so many other things, this symptom lends itself to the theory of a disrupted immune system, specifically at the level of the mucous-associated lymph tissue (MALT) which lines everything between our ears and rectum.

Ear, Jaw, Neck, and Tooth Pain and Swollen Lymph Nodes
To me, this seems to be a huge oversight on the part of doctors and researchers and no one seems to have anything to say about it.  I know I am not alone in experiencing these symptoms.  I have had so many dental exams, going so far as to have my crowns replaced and having antibiotics injected under my gum line, because at times my teeth on the right side of my jaw ache and become sensitive to hot and cold.  It comes and goes, but always correlates with an earache such that if I even touch the aural area in front of the ear, I will feel almost-excruciating pain.  During these episodes, my ear canal also narrows, indicating some kind of inflammation, which I suspect is caused by swelling of the aural lymph node.  These episodes also coincide with a sore throat and a sensation of a swollen node in my throat, along with aches and pains down the side of my neck correlating with other lymph nodes.  Sometimes I can feel them by palpating them with my fingers, sometimes I can't.  I knew my ear canal was swollen and painful when I used to wear my hearing aid as during these episodes it would be very difficult to put in my ear.  Now I can tell simply by inserting a cotton swab in my ear.  Some days there is plenty of room and it's painless, other times I can barely get the swab in there and it's quite painful.

Facial Tingling
I really get weird looks from doctors when I mention this one.  This may, or may not, be related to the Meniere's.  But I get these weird, very brief tingling sensations across one or the other of my cheekbones or across the bridge of my nose.  It feels like a spiderweb or feather brushing the skin and lasts for just a second or two.  It never happens all at once, just in one of the three locations.  I think it's been quite some time since I have felt this one, though, and I don't recall that it would correlate with any other symptoms.

Balance Problems other than Vertigo
In the summers of 2012 and 2013, we took road trips.  After each, trip I developed Mal de Barquement syndrome, with the symptoms lasting about six months!  What that meant for me was that after any time spent driving or in the car, even 5 minutes, I would feel like I was moving for anywhere from 30 minutes to a couple of hours.  At times, driving was very difficult because my eyes couldn't track all the motion around me.  And, as everyone with Meniere's disease knows, we experience a very wide range of vestibular disturbances aside from vertigo.  Some wax and wane and others persist.  I don't think doctors like to bring it up because there's not much to be done about it.  There is vestibular therapy or rehabilitation, but as far as I can tell, it works best for people with a static and permanent loss.  For those of us with fluctuating symptoms, I'm not sure how much vestibular exercises can help to retrain the brain.  Just as soon as our brain adapts to a change, something else gives and we're back to square one.  Many of us also experience a kind of slow nystagmus, or eye darting, another really annoying and distracting symptom.  Fun stuff!

Cognitive Dysfunction and Fatigue
In my experience, doctors and researchers like to pin brain fog and exhaustion on the brain working so hard to keep us balanced.  But I think it's far more complex than that.  I've again come to the conclusion that it is somehow related to some kind of chronic infection and underlying immune response.  I also believe it is complicated by hearing loss and tinnitus.  Despite these symptoms having a huge impact on our quality of life, no one likes to talk about them - maybe because they are poorly understood and there is no known treatment.

I hope this post validates some of the symptoms you've been having , too.  Did I forget anything?  Let me know what weird symptoms you have that no one talks about being related to Meniere's disease.









15 comments:

  1. Anglea,
    I am so happy that you are doing so well and that you are sharing your experience.The list of weirdness can be quite long and I'm sure that this list will reassure many a newbie to Menieres. I remember the pee thing,has always been a factor for me as well. I remember we talked about it on the old Menieres forum.
    Thanks again!
    James

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  2. i can relate to most of the symptoms you describe. especially facial/neck tingling and pain. Last seven days have been absolutely weird for me. I have been having worst symptoms of ear pain and aural pressure ever. I dindt know it can get this bad. On Friday i wen to see a doctor since i thought (and was hoping, actually) i had an inflammation of the middle ear. Doc looked and said "everything is looking great".

    At the same time during this worst-ever-season i havent had any attack. Only hell of a tinnitus, nausea, sudden sways when i need to focus on my balance.
    These sways are not drop attacks, i can stand but they are pretty quick and i feel them like me stomach is turning upside down.

    For me this disease have been going now for some 18 months or so. The fatique is overwhelming. I suffer keeping things going. Nobody can see this, of feel this and there is little or zero sympathy available.

    I count days and keep on waiting for the next violent attacks. Last one took some 10hrs + another 6 hours of sleeping. I couldnt move, i vomit and had to lie on the floor pressing my head towards the floor to avoid any movement. Half of inch turn and i throw up immediately.

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    1. I can relate to what you're going through, Mike. As you said, until the vertigo hits, no one really understands just how awful you are feeling as you muddle through life, holding it all together. Are you being treated by a neuroTologist? Not that you'll get a whole lot more sympathy, but they have the best chance of offering you treatments to control the vertigo so you can get a reprieve from the hellish rollercoaster.

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    2. Btw, you have my sympathy.

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    3. Thanks forthe sympathy! I have seen ENT´s over the last two years or so. What they can do is pretty much hearing test and betahistine. MRI was taken. I live in Europe. I feel there really is no actual treatmens available. Gentamicin injections exist but they would not help me since my main problems is tinnitus, then pressure and after those 2 the attacks.

      It seems in the US the doctors seem to be more interested in this disease. In here it is "carry on, dont think about it that much, it wont kill you" as if this was all up to one´s attitude and lack of mental strenght.

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  3. Thanks for posting this Angelea. I can absolutely relate to recurrent sinus pain and the absence of colds in my case as well. I had several months of sinus pain before my cochlear hydrops started. And even now I have sinus pain about once every couple of days. I have not had a cold in more than a year. And I used to catch colds very often before. This is very interesting. Does Stephen Spring have any explanations for why infectious diseases disappear or reduce for people with Menieres?

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    1. I can't speak for Stephen, but based on what I've come to understand, our immune systems may be stuck in a kind of chronic state of trying to suppress one or more chronic, underlying infections. The response is not autoimmune, but one of the non-specific immunity common at the onset of an infectious assault. Normally, this response would transition to the more effective immune response which is specific to a particular antigen. But instead we're kind of stuck in this chronic, overactive nonspecific response. So anytime a new pathogen comes along, it's getting suppressed faster and harder. Does that make sense?

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  4. That's my sense as well, based on what you posted on the menieres.org page (now deleted :-(). Your explanation does make sense to me.

    Like you I think I had exposure to mold due to my car's floor getting flooded. I got it cleaned and detailed at a local car wash place but the moldy smell lasted months. All this happened about a year prior to my symptoms, so I'm not totally convinced this was a factor, but it is intriguing.

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  5. Thank you for writing this, I don't fee so alone. I do have a question though. Do you or have you ever been able to feel the floor move or shift when you are in a building on a higher floor? If I am on usually any floor above the 3rd floor I can feel the foot shift or move. Anyone around me that I tell looks at me like I have 2 heads. It causes mild vertigo for a few seconds each time that throws me off balance. Wondering if this is something you or any of your readers have experienced?

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    1. I've experienced lots of similar symptoms over the years. I can't say I've noticed a difference on different floors of buildings, but having something stationary to focus on can help a bit. Do you think it happens or gets worse when you look out a window or lose a stable visual point?

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  6. Angeles, is the fatigue from the Meniere's? I just got diagnosed a few days ago after a year. For several weeks now I just want to stay in bed all day. I have almost all of the symptoms that you have. Thank you for for posting.

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  7. Dear Angelea,
    Can I ask you or anyone else reading this - Do you ever get a loss of feeling in your outer ear or ear lobe when hearing loss and MD symptoms are at their worst?

    One of the consistent things I notice is that the outer parts of my affected ear feel numb, almost rubbery to the touch when my tinnitus and hearing loss are particularly bad. This can go on for several months, coinciding with my bouts of MD. I also notice that my lymph node/parotid gland feels very hard, almost like bone on my affected side.

    Well, just wondered if this rings a bell with you or anyone else. Thanks for sharing and I hope you are continuing to experience a better quality of life.

    Regards,
    Ellie

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  8. Hi Ellie,

    Hmmm... I don't recall having a loss of feeling around my ear, but I do think others have reported burning or itching.

    I did used to get enlarged lymph nodes, a sore throat, and a general sense of feeling unwell leading up to and around an attack. Actually, there were times I felt these symptoms nonstop for weeks/months.

    Anyone else care to chime in?

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  9. Reading these comments has been helpful, I've suffered with Meneire's for the past twenty years and it's got worse. One really bad attack where I felt as if I was in a tumble drier and couldn't stop being sick saw me in A and E don't remember much about it. I had another very bad attack at the end of March and am still trying to recover from it. Unlike other times my forehead has swollen up like a balloon, usually after an attack the dizziness goes not this time. I can function and keep going but a struggle. I'm going to have to ring ENT for another appointment. Sympathy to every one out there suffering with Meneire's. Wouldn't you think they would have a real cure by now, we are still in the dark ages with this it destroys life.

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  10. Yes! The urination thing, finally! My dr’s are baffled by the attacks and then the onset of having to pee “ like a race horse”. Every 15-39 min. Crawling down the hall to the bathroom because it would be like I hadn’t gone in 12 hrs and I drank a case of water. Also the weird bowl issues.. ugh. Thank you!

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