I touched on this subject in an earlier post. But I want to really ‘touch” on the subject. On October 6, 2019 I went to bed a normal, ‘happy’ person. Life had been a real challenge since Donald broke his knee. But I was coping to say the least. But maybe subconsciously I really wasn’t. Anyway, I went to bed, went to sleep then just hours later my eyes shot open, the room was spinning and I really thought I was having a stroke. What else could it be? I felt like vomiting, so I rushed to the bathroom as fast I could considering the room was spinning. As I was vomiting, I collapsed on the floor and told Donald I did not feel well. He called 911, the ambulance came and took me to the ER. They told me I have vertigo. I had no clue what that really entailed other than I knew my aunt had a ‘case’ of it. She did some head/neck exercises and never had it again. Okay, I thought to myself. My aunt got through this so I can, too. I went to my family doctor to advise me what I should do. He was no help. I asked if I should go the an ent and he told me if I wanted I could. So I did. I made an appointment with the ent, assured he could give me meds or advise or something and then I’d be over this. He told me to go to vestibular therapy. And I had to have some hearing tests. In the end after many visits to him and many tests, he was stumped...he didn’t know what is wrong with me. The vestibular therapist told me I didn’t have a balance issue and dismissed me. Then I went to the neurologist who said I had vestibular neuritis...but he was sure. He ordered an mri...and when he looked at the results he said he wasn’t sure what I had as the brain scan was clear...well, all for a couple of blood vessels that were closed off....old age.
I went to eye dr who says I have some problems with my eyes, like convergency and some other stuff and I’m in vision therapy. Then I saw and ent from the University of Maryland and he said he doesn’t know what’s wrong with me.
Weeks after I had my vertigo attack I felt as if I was walking on a boat...it was horrible. Not being able to stand or walk, no balance....who can live like that? Then days later I got on my computer and had another dizzy attack. I felt to the floor. I was yelling for Donald but he went outside so our wonderful dog, Maddee came and sat by my side. I was yelling and crying...wondering if my life was gonna be like this forever now. How can I find a solution to this if the doctors have no clue?
For a couple of months after this I would have dizzy spells that would knock me into the doors..or I could get up out of bed. I felt sick to my stomach. Really, really sick. I had a friend who told me what to take to help with the nauseated stomach. But the worse parts of all this was that I couldn’t drive, I couldn’t walk right..
After the boat feeling went away the trampoline sensation came along. It wasn’t so much I was on the boat anymore as it was I was walking on a trampoline. Horrible. How can I live the rest of my life like this??
I needed answers...I went to facebook groups, which when I started looking for vestibular groups, I was shocked to find so many people dealing with this. Every day for years some have reported. How is this possible and nobody has ever heard about it except those who are dealing with it? I became a member of a new group....the group of vestibular people. There are also people dealing with being permanently injuries from having ‘myicin’ toxicity...like gentamicin. Those medications actually kill off the little hairs in the vestibular system and make people off balance..crippling them.
So where am I at now 8 mos later....I’m better, but not much. I still can walk straight. I can’t stand without feeling like I’m falling over. I need to sit to feel still.
I have an invisible disease....I pray to God to please heal me. But I’m not there yet. I don’t know if He will...it makes me sad. Why do I have to live like this??
I still am scared I will have a vertigo attack. And since I’m the only driver, I worry I might have a dizzy spell when I’m driving.
There is an organization called Veda. Their ‘symbol’ is the flamingo. I asked someone why a flamingo and they told me because flamingos balance on one leg...it is symbolic of what we can’t do....something like that. Or maybe we strive to balance on one leg..which most of us can’t do now. So much we can’t do.
Blessings!
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