My migraines started when I was in first grade (circa 1993 or 1994) and lasted until my junior year of college (2009). They have been such a significant part of my life that I even did my capstone research in college on the physiological mechanism of migraine headaches. I spent so much time seeking the help of medical professionals, that I decided to become one-- I am going to physician assistant school. They have been so awful that I have, on several occasions, been afraid to make plans because I could count a migraine ruining them. I am writing this blog in hopes of giving a new idea to someone who is fighting an uphill battle against migraines. If any of this sounds familiar, I hope that maybe the same things that have helped me might help someone else.
When they started, I remember being sick at school and not be able to raise my head off of the desk or take my hands off of my forehead. Eventually, I would vomit and be sent to the office where I had to chew up some Tylenol because I couldn’t swallow pills, or call my parents to come and get me. The headaches grew to be more and more common until I became a frequent flyer in the nurse’s office, if I even made it to school at all. During elementary school, I got glasses, I kept special snacks at school to try and prevent low-blood-sugar-headaches, I had my blood sugars tested, I missed countless birthday parties, field trips, and skating parties, got sick and threw up at multiple sleep-overs, and I became best friends with the school nurse.
During junior high, I started seeing a neurologist for these episodes. She put me on many different preventative medications, none of which seemed to touch these things. She suggested that I journal my headaches (which I never remembered to do). I also saw a couple different PCP’s and an ENT, none of whom could give us any promising treatments. My parents and I were getting frustrated with the constant disability due to my headaches. We finally saw a glimmer of hope when I saw an orthodontist who said that I had TMJ. This meant that the headaches were being caused by a problem with my temporomandibular joint. He said that my jaw was clicking and I was clenching it constantly. I wore a series of mouth-pieces (even at school...embarrassing) and finally got braces. This treatment made my headaches much better, but not non-existent. Years later, I still get relief from sleeping in a Dr’s Night Guard mouth-piece if I notice tension in my jaw and neck.
In high school, the headaches continued and I just considered them a part of my life. It seemed like I had one almost every day. By this time I was taking preventative medications as well as some heavy-duty abortives. It seems like so long ago, that I can’t even remember all of the medications that I tried. I was on the crew team and I can remember my coach being so sympathetic towards me because his wife also suffered from migraines. He said that he could tell by my eyes which days I was sick. Some days, exercise made me feel much better, but other days, it just pushed me over the edge and I would get home from practice and spend the rest of the night (and sometimes the next day) in a dark, silent room with an ice pack strapped to my face. I missed so many days of high school due to migraines that my doctor ended up giving me a blanket excuse because I had surpassed my limit of absences.
Despite having several debilitating migraines per week, I went away to college. Luckily, I had a very understanding roommate, who I had known since kindergarten, and knew very well that these headaches were pretty serious. Because of the headaches, I struggled to keep up fully with the “social activities” that go along with college. If I went out one night, even having one drink, or coming home early, without fail, I would be in bed the entire next day. Not being able to keep up with the drinking however, did not make my GPA skyrocket, because I was equally disabled during the week, unable to attend class. In fact, one week I had a migraine lasting several days that had left me paralyzed by the pain. Finally after I could no longer stand the pain, I asked a friend to take me to the emergency room. This was not my first trip to the ER with a migraine. It was, however, the first time that I had any abnormal tests come back (seriously, everything was ‘normal’, from every doctor/test, up until this point). The ER doc said that I had calcifications in the brain. This of course caused major panic, my parents came to get me, I missed a ton of class and I took the CT scan back home to my PCP. As scary as it was, I was so excited to finally have an answer. Well, false alarm. No calcifications here, it was a sinus infection. This was the last straw. None of the local doctors seemed able to give us any answers, and I could not live my life at the mercy of my migraines. How would I ever finish school or even hold down a career?
My mom found a doctor at the Cleveland Clinic. She worked in a special department of neurology that dealt exclusively with migraines. The first time I went to see Dr. Kriegler, I was skeptical that we would find answers after all that we have been through. Boy did she prove me wrong. She gave suggestions that I had never thought of and that no one had suggested before. She asked questions that no one else had and didn’t dismiss anything that my parents or I had to say. Seriously, if you have migraines and live anywhere near Cleveland Clinic (we drove 3 hours, but I would have gladly driven further for the results), run- don’t walk over to the headache department and make an appointment.
She switched around my medications. She had me try anti depressants, beta-blockers, nasal spray, imitrex, maxalt, and zomig (still do the zomig). The medications however seemed less effective than the other treatments. She noticed that I carried my shoulders very tense and high, and that when I spoke, my mouth opened toward one side more than the other. As a result, she recommended physical therapy. Physical therapy seems strange for migraines, but at the time, it was the most effective against my migraines yet. The physical therapist taught me to relax my jaw, shoulders and neck. She taught me how to recognize trigger points and rub out any knots in my shoulders and neck. These stretches and exercises seemed miraculous. I religiously stuck with them, even in my dorm room. The migraines became a bit more manageable but didn’t go away completely. After about a year with Dr. K at Cleveland Clinic, my journals were showing about 15 headaches a month. A few of them were vomiting/dark room/ice pack headaches, and the rest were take-a-zomig-and-try-to-function-headaches. I heard about using Botox for migraines and asked Dr. K about it. At first, she said that it wasn’t something that she did often, but my mom and I had researched it and found that she actually worked with Dr. Guyuron, a plastic surgeon who pioneered a migraine surgery after realizing that Botox and face lift patients found relief following procedures. At one point, Dr. K’s nurse practitioner told us that, before Botox, I would need to try three preventatives and three abortive medications, which I had done. We talked her into letting me try it and I got my first injections in February 2009. There were three sites in my forehead (above my eyebrows and right down the middle) that she injected, along with the back of my neck (where the neck meets the skull) and across the top of my shoulders (where she felt knots). The week following the injections, I was miserable. I felt like I was wearing a painful turtle shell on my back and it even hurt to lie down, not to mention I had a horrible migraine for almost a week straight. After that initial pain wore off… the Botox CHANGED. MY. LIFE. It was 100% effective. I may have had 2 migraines the entire time I had Botox. I drove to Cleveland every three months and saw Dr. Kriegler for about 5 minutes each time, and each time she was impressed with my results. I eventually tried to wean off of my propranolol (the beta-blocker), but switching to the lower dosage gave me a dull headache, so we decided to stick with it. I know that the Botox is now being used more widely and you probably don’t have to jump through as many hoops as I did. So, I encourage anyone who is having horrible migraines that are ruining your life to make an appointment RIGHT NOW to ask your doctor about Botox for migraines, seriously. Countless times I told my mom that I wish they had used Botox for migraines when I was in first grade so I could have avoided this mess.
Eventually, we heard of Dr. Guyuron, also in Cleveland, who discovered that face lift patients had migraine relief post-op. I asked Dr. Kriegler if she thought I would be a candidate and she said that because of my AMAZING Botox results, I would indeed be a great candidate for the surgery. So that day, she gave me Dr. G’s number. When I met with Dr. G, he suggested that I get Migraine Site IV surgery. It is a nerve decompression surgery on the occipital nerve. Basically, they cut out a small portion of the semispinalis muscle around the nerve and replace the tissue with fatty tissue to insulate the nerve and prevent it from being constantly stimulated, which causes the migraine. I had to take in a CT scan as well and he recommended that I also get septoplasty and turbinectomy. Not only did the CT reveal that I had a very crooked septum, but I had mentioned during my history that I felt relief by squeezing the top of my nose between the eyebrows during a migraine. At first, I was skeptical that I needed this septoplasty/turbinectomy because I RARELY get sinus infections/runny nose/allergy problems/etc. But, now, I am so glad I did it. I was especially nervous after googling the procedure and hearing horror stories about the recovery… I’m telling you now. Don’t believe ANY of it. The recovery from the sinus surgery was done when they took the drains out 5 days after surgery. I have felt totally normal since then and as I type this, I am 9 days post-op. I have no more headaches to report, so I guess this is the end of my “migraine history.”
