Hello, my name is Phyllis. If you are visiting this web site for the first time then I would like to welcome you to this group. I myself found this group a little over a year ago and in doing so found a "loving space" in cyberspace! While many of us are fortunate to having family and friends to lean on for support, the members of this group offer something unique. Basically, it is the "first hand" knowledge and experience of living day to day, with a vestibular disorder.

My vestibular disorder began in 1985 with episodes of violent vertigo, headache, and many migraine equivalence symptoms. I was living in a foreign country at the time and ENT specialists were not readily available. The episodes would come, last for about two days and then leave. Since they only occurred between two and four times a year I learned to accept them and live with them as best I could.

In 1997, without any obvious reason, the nature, frequency and duration of these episodes changed completely. They now lasted for days, and weeks at a time, and with them I began to experience many new symptoms the most important being a sense of imbalance after, and in-between the episodes. Like so many other people at this board I began to see numerous specialists, in different medical disciplines, and underwent all the usual ENT and Neurological tests. I also participated in Vestibular Rehabilitation for over a year with no improvement.

At the time, I was certain that I would discover precisely what was wrong, and be given the perfect drug to cure the condition. I spent over a year searching and exploring every possibility, including alternative medicine. I was determined to "know" what was wrong. Eventually it was determined, not so much by actual scientific testing, but rather through the process of elimination that I have Atypical Meniere’s Disease and in addition a Central Vestibular Disorder which is probably migraine related. I now live with vertigo episodes on a regular basis, and my balance system seems to be permanent damaged and growing progressively worse.

For over twenty-five years I had a wonderful career in the helping profession and for this I am very grateful. I worked as an administrator with the Developmentally Disabled, as a psychotherapist in a private practice and as a teacher at a number of universities and colleges here in the States and abroad. As my vestibular disorder worsened I could no longer work and I am now on disability.

On a more personal note, I am 56, married, have two children and three grandchildren . My husband and I recently moved from NYC to the Blue Ridge Mountains of Virginia in an attempt to bring simplicity to our lives as well as to be closer to our daughter and her family.

There are two things which help me to cope day to day with all of what a chronic illness brings. The first, is simply human kindness. Over these last three years, whenever I have experienced the open heart of another, even for a moment or two, all suffering dissolves.

The second, has been my acquaintance with Buddhist philosophy and the influence it has had on my perception of this illness. I have come to see this illness as a powerful teacher that has made me slow down in ever so gentle a manner. I often wonder if this illness had not struck, would I have ever truly heard the wind chimes on my front porch or witnessed the ever changing motion of the trees as they move with the wind? Would I have spent hours watching one tulip plant bloom? Would I have been as present, as I now am when my grandchildren arrive? Knowing myself, I seriously doubt it.

Like so many others with a chronic illness, I do miss and often long for so many of the things I was able to do, and no longer can. Living with a vestibular disorder impacts on one’s social and emotional well being also. So, if you find yourself angry one moment and grieving the next, glad to have a good day and then disappointed once again when the symptoms strike – know that you are not alone!

Anxiety is yet another emotion we all seem to experience to one degree or another. I have come to understand this as a part of the illness. It is an anticipatory anxiety from living with the stress created by the unpredictability of what we experience with our symptoms. Everyone after a time learns what works best for him or her to get through these rough periods. For me, meditation, and not resisting, but accepting each moment as it comes seems to bring some peace and reduce the suffering.

May we all be free of suffering.