Clara, glad to hear from you--sorry to hear you are having such a difficult time with this disorder together with little relief from the
total myectomy. Your frustration is very apparent and most of us on this BB can relate in one way or another. This disorder stinks; there
are no two ways about it. I have not yet had surgery
but perhaps those who have will shed some light on that for you. I
do know that for me the meds do cause most of the side effects you mention. There are others who also believe the distraction from the spasms and the spasms themselves can cause those side effects as well.
And the yo yo effect of botox, meds, etc. is almost as difficult for me to deal with as the disorder itself(actually it is a part of this disorder). What works somewhat for me and some others here is the one day at a time concept--there is no and I repeat no stability of any kind with this disorder and that is what I sense you are looking for. I don't blame you for wanting your life back--you deserve it--we all do. But it's different now. For me it is a very delicate balance in accepting these changes and letting go--enjoying the good day and somehow moving through the bad ones without driving myself and everyone around me nuts.
You can take heart we all understand on one level or another. This is the place to vent. Joanne M. San Diego, CA
Hi Clara, glad to see you posting again, but so sorry that things are so difficult for you. I know this disease is awful, but we have to deal with it as best we can and perhaps one day at a time, or even one hour at a time is what it is all about. What we can do for each other is to be here, to listen and to understand. Stay in touch, we care.
June in Toronto (beb/meige)
Hi Clara. I had been wondering about you. The last we heard, life was going very well for you, with training for a new job and eyes much improved. So I hoped you just didn't have a need for the BB anymore.
I'm so sorry that things aren't working out as you had hoped. This disorder does seem to have many ups and downs, so we'll hope for more ups for you real soon. There are many people here to encourage and cmommiserate with you, so drop in oftn.
Sally in North Idaho