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, January 26, 2012

An Allergy Up-Date

I have not been blogging regularly due to being too busy living life.  That is great news and I'm not complaining by any means, but I do always have random ideas floating through my head that I wish I had time to put out into cyberspace.  I like to be able to share my experiences if only to inspire someone else who is struggling to live with Meniere's disease.

Today, my day off, I have a litany of things I "should" be doing, but I really wanted to summarize my experience thus far with the allergy testing and treatment I have been undergoing at House Ear Clinic with Dr. Derebery.  This is a long, wordy post.  It is not meant to make up for lost time blogging.  It is just that I don't have much time to spend on editing today and I'm not sure when I will have the time so I will just post as-is.

I chose to pursue this line of treatment because, despite all that I have tried, including IT and oral steroids, diuretics, IT gentamicin, oral and nasal allergy medications, and antiviral medication (which I still take), I continue to cycle through Meniere's attacks on a regular basis.  The symptoms and pattern have morphed over the past three years and my most recent attacks seem to be occurring every 1-3 weeks and consist of 2-3 weeks of minispins throughout the day, general dysequilibrium, chronic low-grade nausea, fatigue, brain fog, and a buzzing sound and sensation in my right ear.  The attack eventually abates and I am left virtually normal except for a soft whooshing sound in my ear and a little positional vertigo if I turn my head a certain way - all very tolerable.  The time during the attacks, however, not so much.  Though I get by.

I have blogged previously about the beginning of my allergy journey and I've mentioned that I had never considered myself an allergic person.  However, since starting this line of inquiry, I've found that I definitely do have some problems.  Most notably with dusting and vacuuming.  For 24-48 hours after doing this kind of cleaning, I notice a significant uptick in my symptoms.  The more dust I am exposed to, the worse it is.

So I wrapped up the second part of food allergy testing on Tuesday and was relieved, though not surprised, to find out that I did not test positive for any common food allergies.  As I had previously tested positive for several inhaled allergies to things like cats, molds, and common local plants, Dr. Derebery recommended allergy shots.  She explained that for some people, allergic reactions can manifest in our ears.  She is adamant that she does not attribute allergies to the cause of Meniere's disease, but her studies have shown that attacks can be minimized by treating coexisting allergies.  She goes on to say that oral allergy medications typically are not effective enough and do not cross into the inner ear where the reaction is taking place, hence the allergy shots are the only way, other than avoiding all allergens, to effectively treat the symptoms.

I started allergy shots about a month ago and I honestly cannot say up to this point if I've felt worse or better in relationship to the shots.  Dr. Derebery said to expect it to take about three months before noticing a significant difference in my symptoms.  In the meantime, I will continue to take weekly shots and this week I even learned to give myself my own shots.  I was a little creeped out about the thought of doing so, I hate needles, but my 16-year old niece who has had type I diabetes since she was five inspired me.  If she can give herself shots of insulin several times a day, I can give myself an allergy shot once a week.  I was surprised to find it was painless!  I had been getting the shots in my upper arm and that would be a little sore, but now I give them in my hip where I guess all that fat really helps to blunt the discomfort.  Woo hoo!

In addition to the weekly shots, Dr. Derebery also recommended I follow a yeast-free diet.  Apparently about 10 years ago, some doctor claimed that people with mold sensitivities (i.e. Moi) are more likely to have cross-reactivity with yeasts in the diet.  At the time, Dr. Derebery said, this doctor's assertions were poo-pooed by most allergists, but now recent studies have given some credence to the theory so she has begun incorporating the recommendation into her own practice.  While I was given written instructions of what foods to avoid, a quick Google search, if you're interested, will yield lists of foods to avoid including, but not limited to, bread (duh), all alcoholic beverages (boo), cheese and yogurt (wah), anything with vinegar (lots of those things), dried fruits, and most processed foods.  I am going to have to really think about this one.  Many, many of these foods are in my regular diet and I already have a hard enough time finding things to eat that are relatively low in sodium, which I try to stick to if only because it is good for you, and also does not contain beef, pork, cod, or pollack.  The first two meats = yuck.  Cod and pollack produce a terrible GI reaction in me and we'll just leave it at that.

One final diet recommendation Dr. Derebery apparently recommends to just about everyone is not to eat the same foods two days in a row.   Apparently it is felt that by eating the same foods everyday, the immune system can become over-sensitized to the allergens (proteins) in the foods and eventually put allergy-prone people at higher risk for developing a food allergy. So she recommends a 4-day rotation of foods and provides a rotation diet cheat sheet to help with this.  I have to say that at this point in time I have enough on my plate.  This is enough to push me over the edge and since I am not struggling with any direct food allergies, I am going to respectfully decline to put much effort into this right now.  Given that most people in the world eat the same foods every day for their whole lives and are the same populations that have the lowest rates of allergy in the world, I have to second guess this recommendation.  If true, I am sure it's our first world habits and culture that have somehow set us up for immune dysfunction in this regard.

I think that about summarizes things for now.  During the bad weeks, my mind spends a lot of time considering a laby.  I had a hearing test this week and my speech discrimination in my right ear is down to 44%.  And I think some of the words I got right might have just been good guesses.  I really wasn't sure about anything I heard in that ear.  At some point I'd like to discuss the laby option and consider having some testing done to pinpoint just how much vestibular function I have in my bad ear.  If not for the fear of going bilateral, I would have no second thoughts about having a laby.  But I have to remember that this bad ear is going to be of little help in the event of my good ear going south anyway.  Something to still consider, but I need a little break from doctors and appointments for now.  I am still grateful to gent and antivirals for controlling my symptoms just enough to give me more time to consider all of my options and still get by in life.

6 comments:

  1. that is a lot to consider. i don't think i would worry too much about the food thing either. there were no allergies for you so why put yourself through that stress? i agree. oh, and giving up yeast? i don't think i could do it! those are some of my favorite things!!

    i'm sorry your right ear is down so much. does that seem fairly typical of day-to-day for you? i've had my discrimination go that low but then pop back up by the next test. of course, it could be a year between tests. it would be interesting to know what balance function you have but man, i hate those tests with the warm/cold water.

    i was thinking about the laby the other day and wondering if it would truly get rid of this constant dizziness. but i'm not ready for it yet and with the diagnosis of mav on the table, i'm afraid it would all be for nothing. but i am so tired of dizzy. tired of nauseous. tired of little spins.

    hopefully, the allergy shots will kick in soon and you'll notice a difference!!
    ~nicki

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  2. I think the day I had my hearing tested was actually a good day, sadly. I go back in 3 months for another hearing test and follow-up appointment. I think some people do recover some of their hearing with allergy treatments, but I have to consider that the 3 gent shots would have probably made some of that loss irreversible. Who knows?

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  3. It sounds like you have a lot on your plate (or not...just kidding!) I agree with Nicki. If you don't have food allergies, don't worry about it.

    I did the allergy shots for over a year and felt like they were part of my recovery then I missed for over 6 weeks in the fall to Christmas. My doctor said that since I didn't notice any difference that the shots probably weren't doing anything. So I stopped the 15 minute drive each way, once a week and I still haven't noticed a difference. She also said that it can take a very long time to notice the good affects of the shots...up to 10 years in some cases. So perhaps it will take awhile for to notice when I am not on them. I gambled, and since the Meniett is working for me now I am just going with it. I think the amount of time it was taking played a major role in my decision. Since you can do it yourself, that's great!

    My last hearing test had my hearing way up and I felt like it was down, so go figure?

    I haven't drank any alcohol since my diagnosis. Too afraid! I hate those spins so I decided why encourage it. It was difficult at first but now that it has been years I don't miss it at all. Fewer calories in a diet pepsi anyway! (caffeine free of course:))

    Hang in there!

    Deb

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  4. Thanks for the encouragement, Deb. Since I've noticed a pattern now between cleaning the house and my symptoms acting up, I am hopeful the allergy shots (and awareness of the allergies themselves) will eventually minimize that yucky cotton-head and tingly nose feeling that goes along with my ear symptoms. The length of therapy completely blindsided me. No one broke me in gently. Shots were presented as a given that I would do, oh, and by the way, it takes 3-5 years of them to really be effective. Yikes. It could have been presented a little more sensitively IMO, but I'm sure if they present the time it takes too early, people would never even start the shots. Lol! Will be interesting to see how your symptoms go now. Maybe you got the desired effect already?

    I, too, avoided caffeine, wine, and salt for about 2-ish years. I continued to have terrible, awful attacks every week anyway. After the gent calmed down my vertigo, I slowly added a little wine and salt back in my diet. I drink 2-3 cups of coffee a day now, too. That 3rd cup often does set off the dizzies though, so I am cutting back on that. Funny thing is one or two nights in a row of a glass of wine doesn't seem to make any difference, but if I have a glass every night I do start to notice a steady uptick in my symptoms. Now that I see the possibility of a cross-reaction between yeast and a mold allergy, I wonder if that has something to do with it. Like I cross some kind of threshold? Either way, I'm happy I can enjoy a glass here and there again.

    Aren't hearing tests funny? The audiologist, after seeing my poor scores, asked me if it was a bad day for me. I had to laugh when I told her no, it was a good day actually. I know, it's so unpredictable. I'm glad the Meniett works so well for you. I can imagine how good it must feel, I'd like something to kind of massage the inside of my ear once in awhile.

    Hope you have a great weekend!

    A.

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  5. I was diagnosed with Meniere's last summer. I went into a depression and no longer had an optimistic outlook on life. Great news, someone suggested I research Upper Cervical Care. I was hesitant at first, had to drive 2 hours to the nearest location, and then go through a process to see if I was even a candidate for treatment. Long story short, I have been receiving treatment for less than a year now and feel 90-95% back to my pre-meniere's condition. I urge you to research this to see if this can help you as it has for me and so many other people suffering with this "disease". Someone once told me, "find the cause and you will find the cure". I believe Upper Cervical Care did just that for me. I am now on a mission to help as many people as I can...I have been there and no longer have to be. So grateful to have my life back!

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  6. Thanks, Ruth, for stopping by to read my blog and for taking time to comment and share your success! It is always wonderful to hear when someone finds their cause and cure. I tried NUCCA religiously for about 3 months shortly after I was first diagnosed. Sadly, other than improved posture, my Meniere's symptoms were untouched by the treatments. But I do know others have benefitted from it like you have. I hope your symptoms stay at bay and you are truly cured! Keep sharing your success story.

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