Hello, and so nice to join this forum. I’ll enjoy getting familiar with it and meeting the members.
In looking back, I have learned that my migraine issues began in my pre-teen years and all through my life I had symptoms that were MAV and I blamed it on, or it was misdiagnosed, as something else, whether meniere’s or allergies or sinus problems or eye strain. I had a vertigo attack when I was 12. I didn’t have another until in my 40’s. But I had so many classic MAV symptoms all through my life, I just didn’t know it. I was a chronic headache personality, not the stereotypical migraine headaches but everyday pressure and painful areas around my skull. In my mid 20’s, MAV was ramping up at a fast terrible pace, I was on a certain path to vertigo. I couldn’t drive because I was so dizzy nearly every day for about 6 months. It was my doctor that said to abstain from dairy foods for a month and see what happens, although he never said the words “migraine”, “vestibular”, or “meniere’s”, even though I had terrible tinnitus along with the debilitating dizziness and fluctuating muffled hearing. Lucky for me the dairy-free life did the trick back then. Even the headaches went away. I was good for another 15 years as long as I stayed away from dairy products and all its separate components. Then it started up again, with a vengeance not seen before.
Eight years ago, for a couple of years, I had nearly constant dizziness, and when I wasn’t specifically dizzy it didn’t take much to push me over the edge. Two years into that the tinnitus started. Intermittently at first, but by the 3rd month it was constant. Ear fullness and muffled hearing began to increase in my right ear, sensitivity to noise was horrible and I wore an earplug nearly 24/7. And by the 8th month I had gradually become stone deaf in my right ear, no more fluctuations. I was devastated and had some symptoms in my left ear but nothing significant at that time. Also, by the 6th month into the tinnitus, I had my first vertigo attack since I was 12. It lasted about an hour and it was terrible and exhausted me, but not as bad as what was to come. Within another month or so the 2nd one hit and this one held nothing back. It_was_hell. More would follow.
I had to try something, with much of it being familiar with what I went through in my 20’s, I experimented with common food offenders thinking it was something else I was eating. Nothing definite was identified at that time. But we had been suspicious that I was being adversely affected by things I was breathing in and we made huge changes at home to lessen those offenders or even eliminate them (anything with a fragrance or chemical outgassing had to go, dust and dustmites had to be eliminated as we pulled out carpets and replaced fabric furniture with leather and launched a daily campaign of intensive cleaning, my home became a clean air space), I began the game of dodging what would assail me when I stepped out into the smelly and particulate world, and I began to feel better, the vertigo attacks stopped their frequency, but I was never really well, just barely managing, always so easily derailed with the smallest of triggers. One of the really awesome things that improved with the changes I made was that my hearing slowly returned with little permanent damage. The tinnitus faded and the fullness went away. But I was still afraid because this beast could come on so easily and for what seemed like no reason at all. I always kept my promethazine with me every where I went and used it a few times each month to ward off what felt like an impending vertigo attack.
At first I believed I had meniere’s, for 3 years I was certain of it, but as time went on and I learned more about meniere’s, that definition just didn’t fit. I was dizzy so much, it completely altered my daily life, I felt like I was walking on couch cushions most of the time, and that is not meniere’s. Something felt wrong with a meniere’s diagnosis. But I never considered migraine. I had been fed myths all my life, like the rest of us, as to what migraine was suppose to be, and I didn’t fit that narrow, stereotypical definition that is perpetuated by those that don’t understand, and sadly, many in the medical profession don’t understand it either. So I remained uneducated about MAV because I had ruled it out before even investigating it.
I had improved only to a point of barely managing my symptoms. What I was eating and becoming increasingly intolerant of began to take it’s toll for the next 3 years after that, until it could no longer go unaddressed and I was thrown into a relapse for months that added another symptom I had not experienced up to that point, and that was the MAV defining one. Along with the typical ones of constant dizziness which at times was debilitating, tinnitus and ear fullness, I then began to experience extreme sensitivity to light during surges in symptoms along with extreme sensitivity to noise more than ever before. The answer became clear with the help of some of my friends that experienced migraine. It was not meniere’s, it was migraine. Hindsight again proved to be clear as day.
The following 3-4 months afterwards I charted and targeted and experimented with foods and food additives, immersing myself into Dr. Buchholz’s book, “Heal Your Headache”. Later I discovered the book, The Migraine Brain, by Carolyn Bernstein and it is excellent also. I started really getting well, and I lost my fear because what I really had was no longer unknown. Since then not only have I identified my food triggers but have found so many wonderful substitutes that I don’t feel deprived at all, even processed foods, and I know how to read a label in about 5 seconds flat. For 3 years I adhered to a low sodium diet and it turns out that sodium was never an issue after all. Food additives are my biggest food offenders and yet it is the inhaled offenders that will hit me the hardest and be most devastating.
I know what I have and I understand it. It’s a constant struggle, I have to think about it every day, make choices every day, and I feel it often but it is rarely more than just annoying, but I know what it is and what it will do and how to manage it. I have not had a vertigo attack in a long time. I don’t use medications. I am not afraid anymore.