My name is Elaine. ...
My name is Elaine. My story is a little odd. I had a pretty typical start. Around age 9 I had headaches. I remember when I had them I didn't want to go outside in the sun. My mother didn't understand. Since I didn't have a fever she made me go outside. Luckily we had a wooded area behind our back yard and that became my refuge during those times. I also had problems with nausea and vomiting. One time so bad my parents took me to the hospital. I also had a hard time with car sickness if I sat in the backseat of a car.
Other than occasional sinus problems and headaches it wasn't until I was 58 and started having strange dizzy spells and neck pain that my life totally turned upside down, almost literally. My family doctor referred me to an ENT and after many tests I was diagnosed with Meniere's & Migraine Disease. I left in shock with a list of foods to avoid, and information about Migraine Disease and Meniere's Disease. I had never heard of Meniere's Disease before.
At first I only had one migraine a month, and some episodes of dizziness. After one year I started having several migraines a week. At first I thought I was having a sinus infection, but a CAT scan showed sinus's were clear. It now makes me wonder if all those years of "sinus infections" were actually migraines.
I now am a Chronic Migraineur. I have migraines almost daily. Sometimes up to three a day. I don't think I have Meniere's Disease. Although when I have a migraine my ears feel very full and hurt. My ENT says it's migraine activity in my ears. I also have tinnitus constantly.
I now go to Philadelphia Headache Center and was hospitalized for one week with IV infusions. This was very helpful. Still chronic, but felt better in-between migraines, whereas before I always felt ill. I had to retire from a job I loved and go on disability.
I did get Botox injections from my ENT. They were wonderful in that they did remove the head pain. I still got the migraine with the other symptoms: nausea, malaise, sensitivity to light & smells, dizziness.... But at least the head pain was gone, no small feat! It lasted two months. My doctor at the Headache Center said that I would get more Botox there and it would last longer; also, I was diagnosed with cervical dystonia there so I would get extra injections in my neck for that. I still had neck pain after the Botox injections. I'm waiting to hear about insurance approval. I do have worries about longtime effects of Botox injections in my head. But when I get a migraine those worries go right out the window!
It has been a struggle emotionally. I get very depressed. I'm mostly home. My husband is very supportive but feels helpless at times. I gave him such a scare at one point. I was having such pain with the occipital nerve pain in my neck I thought I'd go out of my mind. He kept a handgun in the drawer of his nightstand. I left him a note one morning to please take the gun out of the house. He read it, rushed back and got the gun, and left with tears in his eyes. It hurts him so to see me in such pain and he's so powerless. I have to say I take no pain relievers since I'm chronic it would cause rebound, or addiction if I used strong medication. Hopefully I'll receive good news next month when I go to the Headache Center for my appointment, although I'm sure I'll be calling them prior to the appointment to find out about the insurance approval.
How is it my ENT had no problem but my neurologist has a problem?
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