FINALLY IN CONTROL 2012

                A New Doctor,  A New Diagnosis,  And I Am In Control

     ""I used to walk in the shade with all them blues on parade.  Now I'm not afraid 'cause this rover crossed over"   On The Sunny Side Of The Street

     I called The University of California- Irvine Otolaryngology Clinic at their hospital.  I made an appointment (12-6-12) with their physician who is an expert in Meniere's Disease because I had been told that was my  diagnosis by so many doctors. ( It took me almost 4 1/2 years to get to this point.) The office also scheduled an appointment for me with the audiologist.  Dr. Hamid Djalilian is the Oto-Neurologist, surgeon and Meniere's Disease expert.  When I arrived, I once again was dizzy in the waiting room and then in his small exam room.  The audiologist turned off the lights and then I was fine.  The vertigo left and she ran to tell the doctor.  He read the long history I had prepared for him, noted my dizziness from the fluorescent lights (now I know  why I got dizzy at Target, Cost Plus, doctor's offices, my work, etc.) and examined my eyes with a light.  He then looked at me and said, "You do not have Menieres Disease.  You have Migraine".  

     He stated that this is a neurological problem and, hence, all my neurological symptoms. I immediately told him that I had never had a migraine headache and he informed me that 1/3 of the people with migraine never have the headache.  They have many of the other symptoms and that I am on the migraine "continuum".  I need to look at myself as a "migraineur" and this is "Silent Migraine".  From his handout, "Most think of it as a headache problem but it has become apparent in recent years that many patients suffer from symptoms of migraine who do not have a headache as a dominant symptom.  These patients have a primary complaint of dizziness, ear pain, ear or head fullness, "sinus" pressure and even fluctuating hearing loss".  Hello.  That's me.

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               The new thinking is , according to my doctor,  "the tiny blood vessels in the inner ear are innervated by branches of the same nerve that innervates the intracranial blood vessels severely affected in migraine attacks.  Individuals with Menieres who have been treated effectively for Migraine see improvement in their Menieres symptoms.  This has been my experience."  Meniere's Disease is very rare and yet so many people suffer from vertigo.     He REQUIRED me to read "Heal Your Headaches: The 1-2-3 Program" by David Buchholz, M.D.  This book details a program which puts Meniere's disease, and other causes of vertigo,  on the Migraine "continuum" and thinks of it more as "Silent Migraine"  rather than Meniere's or BPPV or sinus problems,etc. You can get this at the library or at a bookstore.  There is some controversy with the tone of  this book as it is not "easy" to make all these changes.  (Also, some individuals may in fact have Meniere's or BPPV.)   My doctor does disagree with some of the section on rebound medication.    I also have information from Dr. Michael Teixido MD and Dr. John Carey MD who wrote a helpful article I found online "Migraine - More than a Headache".  They are also from Johns Hopkins University. ( click here )   The relationship of endolymphatic hydrops (too much fluid) to Meniere's Disease has not been made clear.  Autopsies often show too much endolymph or a tear in the semicircular canals in people who never had Meniere's symptoms.  And some who had intact canals had been diagnosed with Meniere's.

      According to this avenue of thinking about vertigo, the treatment for the atypical symptoms of migraine (vertigo, nausea, etc.) is trigger identification and avoidance.  These triggers can be food related (all but one of my original RAST test identified "allergy" foods are on the trigger list - so that's why that avoidance and elimination diet worked for me 25 years ago), STRESS, environmental and physiological.  I have since read that for many women, vertigo replaces headaches when they go through menopause.  My doctor, who is an oto-neurologist, put me on Nortriptyline (an antidepressant which relieves vertigo while you are putting the diet and other changes in place) for a total of 12 weeks (you build up the dose and then slowly reduce it).  It took 5 days for the Nortriptyline to kick in.   If you are not depressed, the medication  has no other effect on you.  All rebound medication is ceased.  Once you have been on the low tyramine/headache diet for 6-10 weeks (and you must do this for this amount of time), you can slowly add  small amounts of restricted foods and weigh their effects.   You have raised your threshold for tolerance of food and chemicals and environmental stresses that bring on vertigo and other symptoms.   I notice less effects of fluorescent lights when I am on this diet and program.  Nor am I as sensitive to eye or head movements.  My balance is steady.  Tinnitus is reduced.  And note, just trying this regimen for a few days or a week will not help.  It is important to work with a knowledgeable doctor for several months.

                As you will read, this is a neurologically based issue - and this same nerve goes to, and affects, the inner ear.  The books and literature give much more thorough explanations than I am qualified to offer.  (Please see my Resources section) They are worth your time if you suffer from these same issues.  My hearing in my right ear has gotten no worse, maybe a tad better (according to the last audiogram), since implementing the diet. Although, I am left with a moderate loss in that ear.  My sound discrimination in my right ear is very poor.  My tinnitus is less when I am compliant and sinus issues are very reduced.  If I slide off the wagon, my ear gets very full, I have balance problems, tinnitus is louder and I feel like I am on the verge of vertigo all the time.  Fatigue and too much talking or loud talking are also triggers,  as well as hunger (Remember when I went to the cheese tasting and skipped dinner and was very over-tired the night before my first bad episode in 2008?) and weather changes. I also suspect a histamine problem with wheat/yeast as I am much better off bread.  When I resume strict adherence to the diet, I am back to "my" normal in a few days.  So, that is my story.  

               After my first time on Nortriptyline and instituting the diet regimen, I went 14 months without any vertigo and only mild inner ear issues .  Then I began having some coffee and banana and avocado.  It was summer and I was not yet drinking enough water.  I had been under two months of  chaos and stress after returning from a two week vacation to a water leak at home.  I made big eating mistakes, it was hot and I was fatigued.  And very stressed.  My symptoms returned in force.   I went back on Nortriptyline for 10 weeks, resuming a strict diet.  I stayed off the medication for 14  months after that without problems.  I went back on Nortriptyline again after 14 months off and adhering to a strict diet. It has now been 10 months off the medication.  We are still in the hot summer months (September 27, 2015 today, and we will be hot until November) and hopefully I will make it through to winter.  I'll let you know **(see below).   I wish you all good luck in finding help.  I hope you read the book and share it with your doctor if you feel you may have vertigo from migraine, atypical migraine, Meniere's Disease or Migraine Associated Vertigo.  Some days it will just be impossible to avoid all the triggers.  Please see my resource section.

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            SIDE NOTE:  Maybe It's About Symptom Relief, Not The Diagnosis

         While surfing online through the years, I have come across several  success stories for symptom relief of Meniere's Disease(MD), Migraine Associated Vertigo (MAV), allergy related physical symptoms and Migraine.  These stories really overlap.

          ToastyFrog.Net  (Uses "The Zone Diet", and very reduced caffeine and sugar, to regulate insulin levels for Meniere's).  My doctor also recommends eating at the same time everyday and keeping levels even.  It is maybe more about eating regularly timed meals, avoiding hunger, avoiding dehydration and not skipping meals than  "what" you eat.  And reducing stress. 

               Andrew Goldbaum (Conquer Your Balance Disorder) uses a no- histamine  approach so no  wheat or sugar or citrus and no caffeine, among other things, for Meniere's; his diet is very similar but more restrictive than mine. 

                Widowmaker.com who has "solved 90% of her migraine issues" by eliminating tannins (the foods high in tannins are the same ones eliminated on my diet, with a few additional considerations);

               "The Vestibular Disorders Association" diet is very similar to the Teixido and Carey diet out of Johns Hopkins, which  is also in the book  "Healing Your Headaches 1-2-3" by David Buchholz.

                 "The National Headache Foundation"  offers the low tyramine, no caffeine and no alcohol diet as a solution to all associated (vertigo, etc.) headache symptoms. 

               They may all in fact work because they are basically saying the same thing.  The foods that you eliminate in a low tyramine headache diet are very similar to the ones you eliminate in a low histamine diet (so that covers food allergies or sensitivities as a trigger).  They are the same ones you eliminate in a low tannin diet.  All the diets require you to  eliminate or significantly reduce alcohol, caffeine, MSG, excessive sugar, artificial ingredients and many, or all, of the foods with tyramine.  The Zone Diet has you reducing amounts of everything (especially nuts) per meal and frowns upon MSG items, whole eggs (a histamine), hard cheeses (high in tyramine),  unfavorable carbohydrates (beans, banana, raisins, citrus fruit juices - which are also high in tyramine) and  really limits cereals and breads which have many artificial and trigger ingredients in them.  Only oatmeal is allowed.  For different reasons, there are many similarities among these regimens.  For me, the one from Johns Hopkins works the best because it covers all the bases: reduces tyramine foods which also reduces histamine foods, reduces caffeine, eliminates alcohol and eliminates MSG.  It teaches you about the chemicals in foods.  This elimination and rotation diet allows me options.  I can sneak in a little chocolate, and 1/4 tsp. instant coffee grinds into my decaf,  to keep life worth living.  I can do this because I keep the other triggers very low.  I stay off rebound medication.  Salt does not appear to be the bad guy but since I do not eat out much I can keep it at a low-moderate level, just in case.   If you feel that food allergies or sensitivities aggravate your situation, this type of diet aids those issues.  Keeping these avoidable triggers at bay will help you tackle the unavoidable ones.

     I know this new approach will be a challenge for you to consider.  But if it helps reduce or eliminate vertigo (and the subsequent awful problems), tinnitus, sinus issues, poor balance and ear fullness,  it will be worthwhile. I hope this site will be helpful and supportive.  And I am sorry that our lives are no longer carefree.   (Click Here for My Diet/My Program

                 (click here for current update http://vertigotalesandtastes.blogspot.com/2018/02/update-for-2-12-2018-hurray.html)

    ** (I had to go back on Nortriptyline 9/15:  Click here for the Update 9/15)