In 2012 as my very first IVIG treatment began to flow though my veins it sounded as though wind was rushing through my right ear. Within a couple of days after that treatment, a sensation of instability hit so bad I could not walk, horrible nausea came with it, headache, light sensitivity and it came with no warning. After some treatments the symptoms would last for a couple of days, sometimes for a couple of weeks. I also developed other issues, and my quality of life went into a tailspin. And, I noticed that my hearing in the right ear was coming and going.
For almost two years no one in the medical field that I saw had answers. There were tests, MRIs, x-rays, blood work, questions and no answers. I found a support group for my disease on line, and was given the name of a doctor who mostly did research but saw a few patients. He agreed to see me, and he finally told me that 10% of those who did IVIG treatment had side effects like mine. Aseptic meningitis was the diagnosis.
Through those three years that I did treatments, the brand was changed, the infusion time slowed, fluids were added and there would be relief for maybe one month and then it would all come back.
After three years, against the immune doctor's advice I stopped treatments. The side effects continued for about 7 months and then there was the wasp incidence. I was stung 15 times by red wasps and for about 6 months the episodes stopped.
In February of this year I had the flu, and in April all those horrific symptoms began to come back.
Not as frequently, but they were there. A few weeks ago we were having Sunday dinner with my sister Pat and her family and my niece Becky and her husband Jeff were talking to me about my health. As we talked Jeff looked at me and said I know nothing about the aseptic meningitis but I have meniere's disease and many of the issues you are having I have had too. He encouraged me to call his doctor and on Monday morning I did.
This week I saw Jeff's doctor and was diagnosed with menieres and migraines. ( I had already read that if you had previous issues with migraines that the IVIG could cause them to worsen or reappear.) The doctor was kind, informative and supportive and told me that no one really knows why or how sudden deafness happens and he was not sure if any of my hearing loss would come back, but he explained in detail about menieres and migraines. And there were some simple meds we could try and maybe at some point a couple of procedures.
I have said all of this tonight to tell you that I started the meds Wednesday and for the first time since 2012 the wind in my ear is subsiding and I can actually hear better. Who knows what the future will bring or what path this journey will take me, but tonight I am hopeful...hopeful that I have found answers, hopeful that at least a little of my hearing will be restored.
Jeff had also received infusion treatments ( different than mine) and his symptoms started afterwards, no one knows or will say if our issues were caused by the treatments we both received, maybe it is just a strange coincidence. But I write this tonight to encourage those of you who might be struggling with health issues, who feel that you have fallen through the cracks or that no one cares...don't give up. You have to be your own advocate, you have to take a part in your wellness and health, and you have to do what you feel in your gut is right for you.