The Migraine Hostage
Last updated: June 2023
The very first time I ever had a migraine was at 37 years old a day after flying in from NY to Las Vegas. I didn't know it was a migraine because I had never had one before and I was thinking I had some type of flu! I was in so much pain but was due at a very important conference at 8:30am so with no sleep and feeling pain in my head, and very sensitive to lights and sound and even feeling nausea I just pushed myself to the meeting. Little did I know this was the Beginning of the most debilitating illness of my life!
By evening time I was so sick and depending on another girl to drive us back to the suite' I had grown woman fighting with me to just suck it up and go dancing because after all we were in Las Vegas! No Way' I was about to lay down in the back seat of the car. By the time I got back to NY I thought I was recovering from the flu. Then the whole "pattern" happened again and I would feel deathly ill and have to go to bed and could barely take care of my 3 year old son.
Finally I went to my Family Dr. He said he thought it could be Migraines... I said "I didn't think so'" because I never had them and probably thought it was just a headache! Oh How it can be so isolating to have people think just take a Advil and stop being a baby. I'm no baby! In fact I will keep pushing way past the point of no return. By the time I moved from a regular neurologist to a Migraine Specialist I was having continuous migraines that I would need rounds of steroids to break.
Now I am at 3 migraines a week for a good week and 5 in a bad week, and they usually last from beginning to end 24 hours. Even my eyelids hurt so bad, they feel like they are pulsating and I even had several bouts of vertigo when having a migraine and that is very scary. The first time I thought I was having a stroke. I cant even walk sometimes. So my life is pretty much controlled by having Migraine disease.
My relationship with my 25 year old daughter is pretty sketchy because she believes if only I pushed through the pain I could function. I'm 44 years old and my son is 11 now and his life has been permeated by me telling him that I need to lay down or get my ice packs. To please speak softly. My daughter is mad at me because I don't do more with him and since I divorced I am the only one he has. I have felt like a hostage because I have the chains of migraine pain and other debilitating symptoms dictating my life. And on top of it the few people in my life aren't open to being educated. They don't want to believe I have so little control.
I am Very sensitive to many triggers. Foods, lights, weather changes, sleep interruptions, even emotions. Even getting happy can trigger it. It seems like I cant get a grip on it because im trying to take care of my son alone and that means getting up at 6am for school even if I was up until 2am the evening before with a migraine. I don't even have a Migraine Specialist anymore because I moved out of state because of financial reasons. I am hopeful that as my son gets older maybe I could take care of myself better. Get the sleep I need, and be able to take the time I need to focus on combating this disease.
I tried Topamax once and even though I sounded like a babbling idiot I was willing if it prevented the migraines. I ended up with having a bad reaction with another medication I was on and couldn't get off my couch all day. I would drop my son off to school come back home and take the medication and be like a zombie all day. Gaining 30 lbs in 2 months plus still having the migraine I stopped the Topamax. I don't know how to stop this cycle. Ive been living like this for at least 7 years. And the stress from moving and living in poverty are making it worse I believe.
The worst part is the isolation and having no help and being responsible to raise a child this way. I try to hold on hope that ill be free but most of the people in my life have faded away because they don't understand' its a invisible illness. I did a video campaign and I bet most migraineurs could see in my face the physical pain. Here is a link at the condition of my life after migraine has taken hold.
This is where I ended up after Migraines have completely taken over my life. I am an educated, talented, loving woman who is fighting each day and still believing I will be able to get some type of control over this disease. Reading others stories on Migraine.com is helpful but I haven't reached out because the pain is all consuming and the shame is heavy. I want that people would become educated because this literally can disable the person with migraines and destroy their relationships. When a dr has said "well at least you wont die' from migraines" I said " You call THIS Living"!!!
Are the family and friends you will be seeing this holiday season understanding about migraine?