My Life of Migraines and Headaches
The first I can remember getting "headaches" was in the 6th or 7th grade. I would get them so bad I'd just have to lay my head down and most times end up in the clinic. I was there so often the nurse didn't know what to do with me so most times I'd just lay on the cot, in the dark, and dart to the little restroom when I had to throw up. Many times my mom would take off work to come to get me. My pediatrician just guessed at causes like allergies or my favorite, I was allergic to chalk dust! Yay, no more dusting erasers! Ha! So many thought I was faking it to get out of PE or out of doing work but that wasn't the case.
Migraine during high school
The "headaches" continued in high school which is when I discovered Aspirin-Free Excedrin. That would help but I had to take more and more as time went on to get any relief. I finally went to a neurologist who diagnosed me with migraines. We tried everything under the sun and nothing ever really worked. At 19 I had my daughter. The migraines persisted. I can remember spending so much time on my parents' couch sick. In the dark, with ice packs, running to the bathroom to throw up. My daughter grew up with her mom being sick and practically bedridden. I suffered to make the field trips and other events as best as I could. As she got into middle school it was a task to try and make the volleyball and basketball games but again, I did my best. The high school basketball games were few and far between unfortunately as the migraines kept getting worse. Sadly, I missed my daughter's high school graduation due to being too sick to go. I did manage to get my laptop running to watch her virtually but it wasn't the same.
Arnold chiari malformation
My neurologist claimed I was too stressed from work, need to do yoga, should relax more, etc. But I knew as the headaches got worse and worse there had to be more to it. Finally, in 2009 I was diagnosed with Arnold Chiari Malformation thanks to an MRI. Having this meant that the base of my skull was pressing on my lower cerebellum and pushing it down into my spinal canal....my skull was too small for my brain. Oh, it felt so good to have some kind of answer and prove this doctor wrong! When your gut says something is really wrong, you trust it!
Since then I've had 3 brain surgeries, 3 neck surgeries, an aneurysm coiled, a VP shunt put in only to find out later it was sucking my brain back down so we had to remove it and a cerebral venous stent put in. After all these surgeries and procedures, the migraines STILL remained. I've been to pain doctors who tried everything including Fentanyl pain patches and lidocaine infusions.
Finding the right neurologist
I finally had enough and slowly took myself off of everything. It was absolutely horrible. Thanks to a family doctor, I was given the name of another Neurologist to try. He has truly been a God send! We too had to kinda try this and kinda try that but we have honestly made leaps and bounds in progress! Before him, I was in the ER at least 2-3 times a month! They got to know me pretty well. Since seeing this new doctor I have not been to the ER once. We have a pretty good combo of things that seem to help but never fear....my migraines are still here. They are much better and less severe than they were so for me that is real progress.
Grateful for progress
I have accepted that this is my cross to carry in life and I will continue to carry it. I pray often for strength and patience as it wears a person down, as you all know. I still hope things will get even better as time goes on. Maybe they will, maybe they won't but the progress I've made through all these years (I'm now 44) is proof to me that things can get better so that in itself helps to keep the hope alive in me.
How much has your migraine disease changed or evolved over time?