I don't believe you...this can't be migraines, can it!?!
Last updated: October 2020
I'm 39 years old and I've never really had headaches. Sure every now and then I'd have slight pain like everyone else in the world. But two years ago, out of the blue, something changed. When I was 35 I fell down a flight of stairs and landed Face/chin first, 15 concrete steps down. I was very lucky and walked away with a broken elbow and stitches in my chin. Stiff and sore for a few weeks, but no serious neck injury. Fast forward two years later. My neck started feeling stiff and I found some stretching exercises online. I asked my hubby to help me with one stretch. I basically asked him to pull on my head really hard. I don't recommend this at all. The next day I was driving and had to pull over because I felt like I was going to pass out. It lasted about 10 minutes. I immediately thought that I pulled a vessel or nerve out of place. That feeling of passing out,( I call it "heavy headed" not "lightheaded")came back 4-8 times a day for 3 months. My neck felt very stiff and my vision was pulsing non stop. It was like Everything was shaking.
I'm a music teacher and was almost unable to work. I would pull my car over 3 or 4 times while driving to and from work. I couldn't focus on anything but the aweful feeling of passing out and the throbbing vision. After 1 week of this I went to my doc and a chiropractor, then physical therapy. I received X-rays, CTs and MRIs which showed there was nothing wrong with my neck. Several ER trips were no help. After three months of this nonstop agony and no relief, I was depressed and scared...and finally on summer break. I went to see a neurologist who helped my husband with a spinal fluid leak a few years earlier. When I finally got into see him, I couldn't believe what he was telling me. I actually walked out thinking he has no idea what he's talking about. Migraines?!? Seriously?!? Basilar Migraines due to a hormone imbalance to be exact. He didn't do any tests, blood work, nothing but a history. I don't even have a headache, I thought. I left feeling worse and went for a second opinion from a different neurologist. The second Doctor I saw asked what did the first doctor say...then just told me he was right. Neither doctor explained migraines to me. I knew nothing when I walked in and nothing when I walked out. 5 months of no relief at all, neck pain, passing out throbbing feeling, everyday, no headaches but pulsing vision, a strained marriage, missing my son's baseball games because I couldn't drive.
How can they say this is migraines when I don't have a headache?!? It has to be from the fall down the staircase or the neck stretches. I was perfectly fine one day and then BAM! World turned upside down. Migraines don't work like that do they?!? There were so many other things it could be. I hoped it was migraines. I decided to educate myself online and became more depressed and scared. I went to Doc after doc and no one seemed to take the passing out feeling seriously, I got a spinal tap followed by a spinal fluid leak. That was a fun week and the first time I could say I actually had a headache. I saw a functional medicine doc and we started to keep a journal of what I ate and do blood work. She listened and was genuinely concerned, but nothing we tried worked. The whole gluten free thing didn't work completely, but it does help I think. 6 months in, I decided to try the medicine at the urging of the second neurologist I saw. Depakote. The functional medicine doc begged me not to but I had to try something. It took another 6 months but I don't feel like I'm going to pass out anymore. I do have about 10-15 days of the month where my neck will be very stiff and my vision will shake nonstop. I have headpain during that time and after, but I can handle the pain.
My neurologist wants me to try Botox, but it says right in the brochure that it won't work for hormonal migraines. Did he forget that my diagnosis is basilar hormonal migraine? I'm not afraid to drive. I've gained 20lbs but I can still teach. Band, Choir and elementary music. There are days where I still think, this isn't migraines. I don't have a headache, I don't have to close myself in a dark room all day, I can handle loud noises I'm a band teacher, thank you for your stories. I'm staying hopeful and not taking my life for granted. Maybe it's is, maybe it isn't but at least I'm feeling better.
In the past year, has insurance made it difficult to get your migraine treatment?