My migraines started in my early teen years. With me, they definitely seemed to be hereditary. My dad had them, as did his mother, his brother, and my cousins. I remember when I was little my dad would literally stand and bang his head on the wall when his got so bad. I never understood what he hoped to accomplish with that, but he did it. Mine were fairly tolerable and less frequent than my dad’s. As I got older, they got more intense. I remember my senior year in college, they had gotten somewhat debilitating. I was an English major with a minor in writing so I spent a lot of time writing papers that last year. I would sit at the computer, in tears, with a trash can on my lap, repeatedly taking breaks to vomit, then going back to typing my papers. Looking back, that was a miserable time, and really unhygienic.
I had migraines with an aura. Typically, before the pain would strike, I’d see a haze of color in my peripheral vision. It was usually purples and pinks, with traces of blue. Sometimes it was as if my horizontal hold would go out in my eyes and they would almost “flip down a page” like the world’s worst viewfinder. My headaches would send me cowering in a dark room, made as cold as possible with fans and air conditioning, where I could take refuge until it passed. I would lay in bed, in this cold room, buried under a pile of blankets, with the heating pad wrapped around my head, Vick’s on my forehead and under my nose, and a hot damp washcloth draped across my eyes. When the first injectable migraine medicine came on the market, I was beyond excited. My doctor was nervous for me to try it because I had a known heart condition and we had no idea how it would work. He wanted me in his office for my first injection. So there I was, in his office the next time a migraine struck, and he gave me the injection. I laid back on the table and waited. Twenty minutes passed and it felt like my throat was closing off. Apparently, that was a “normal” reaction. I’d rather live with the headaches!
My headaches got even worse after I got married…wait…there’s a joke in there somewhere, I’m sure of it. Anyway, it got to the point that my husband was taking me to the ER almost monthly for a headache cocktail. The hospital was beginning to suspect that I was a drug addict looking for a fix. They told my husband that we needed to find a better solution for my migraines. We went up to the Cleveland Clinic for an appointment with a neurologist. I don’t remember if they had done any scans of my brain or not, but I do remember they had put me on an anti-seizure medicine to prevent headaches. The doctor told us that migraines are cyclical and feed off of each other and that we just needed to break the cycle. After about six months, they took me off of the medication. Shortly after that, we moved from Ohio to Knoxville, Tennessee. My migraines were gone. For the next 15 years, I lived nearly migraine free. It was a delightful existence with only one migraine per year. In the grand scheme of things, that was an existence I could celebrate!
We had moved from Tennessee to south Florida to Dallas, Texas. Change of location didn’t seem to impact my headaches. I got terrible sinus headaches with storms, but they weren’t migraines. Weather patterns always seemed to play a role. By this point, I had learned to recognize the auras and would take a couple of over the counter migraine pills and I’d never get a full blown headache. I had learned to manage the situation and was rather pleased that I finally had a solution. Maybe I had grown out of the headaches. My dad had stopped getting his too, but they suspected that his stopped because of blood pressure medicine…another curse that runs on his side of the family.
In 2012, we moved back to Ohio and almost instantly, my migraines came roaring back to life. It felt has if they had been in hibernation this whole time and simply needed to recognize the landscape before they would spring back to life to torment me. I worked a stressful job as a project manager and the hours were long. I assumed that was the cause of the return. My doctor told me to manage the stress better. Oh, okay, that is a completely reasonable request…let me just add “relax” to my to do list.
The headaches continued getting worse until I finally went to see a neurologist locally. He suggested a different anti-seizure medicine from what I had used years before and for months, we played with dosing. Finally, we had gotten to the point where I was getting only 5-7 per month. I was actually pretty happy with that…it’s amazing how low your expectations drop when you feel like hell. The doctor wasn’t happy with the results and thought we could do better so he increased the medicine one last time. I say final time because that level of medication seemed to be a tipping point for me and I became suicidal. Backing off the dose and returning me to a lower dose didn’t help. The medication and my body were no longer compatible. We tried several other drugs in that class of medication to no avail. They all had the same effect.
As the years passed, the headaches continued to get worse…more frequent, more intense. We all know how this story turns out so I won’t bore you with a retelling of the day my brain tried to kill me. Instead, I want to share how this story has progressed. My brain started bleeding on March 13, 2018. It ruptured on April 14, 2018. And I have literally had a migraine every single day since that March day. I’ve had a headache for 912 days straight…I’m not counting or anything. There are very few things that I would like to do for 912 days straight. I can say with certainty that living with a migraine is NOT on that list. But, here we are.
This journey has been an interesting one and I am beyond grateful to have an amazing care team at the Cleveland Clinic who has worked with me through every experiment we have tried to find the right combination of drugs. We have tried old drugs, brand new drugs, drugs for blood pressure, anxiety, muscle relaxers. Oral drugs. Injectable drugs. Diet changes. Activities like meditation. And if I come to them with a natural remedy, they’ll investigate to make sure it isn’t going to interfere with any medications or with my brain. I cannot stress this enough…it is so important to find a doctor who will listen to you. One who will fight to find answers. That’s what I have found and it’s been a game changer for me. There was a moment where they wanted to try me on a different blood pressure medication and my BP skyrocketed. They were extremely quick to make adjustments and return me to my old medication, noting that some meds just don’t work well with some people.
As I said before, we’ve tried it all. We’ve tried brand new drugs to the market, which normally makes me nervous. I don’t like being the first to try things (I realize others tried them during the trials but still). But this ongoing headache has been so annoying that I’d try just about anything. Oh…meth works for headaches? Okay, so maybe I won’t try ANYTHING. Anyway, I had been doing Botox for a while, but it wasn’t really giving me any relief so I stopped that and started using a monthly injection of a new drug. It seemed to work great. I was getting almost 15 days per month that I would call “headache free” despite still having a dull, nagging pain. At least the headache was a 1-2 on the pain scale, rather than a 7-9. Then on month 5, the injection completely stopped working. We decided to try a different injection. This one seems to be holding steady after 5 months. I’m getting about 15-20 days of “headache free” days during some months. Some months are worse than others. I also have a selection of abortive medications for when I get breakthrough headaches. Depending on the severity, I can choose from any of 5 drugs to help me cope and get relief. It’s not ideal, but neither is living with a migraine for over 900 days straight.
One thing that has surprised me a great deal is that it was recommended that I try THC for my anxiety, PTSD, and chronic pain. So, I got my medical marijuana card and spoke with the pharmacist on site at the dispensary. Several combinations were recommended when I got my license in 2019. I tried multiple things…smoking, tinctures, gummies…but got no relief for the headaches. It did provide relief for the anxiety and the PTSD though. This year, when I went to the doctor to renew my card, we talked through how my pain was. He wasn’t happy that I was on so many medications. He told me the point is to get me away from pills…especially pain pills. He suggested I try transdermal THC patches. So, when I went to the dispensary, I got a small pack to try. Later that day, I felt the migraine getting worse and I asked my husband to put one at the base of my neck, between my shoulder blades. I could not believe it that I was headache free within 30 minutes. It wasn’t a 1-2. It was gone. My mind was blown. Let me tell you, I went back to the dispensary and bought a ton more! Some days they work, other days, not so much. In the last month since I’ve started this regimen, I’ve probably had 7-10 days completely headache free. I don’t automatically put on a patch…I wait until the headache really starts because I dream of a day when I won’t actually have a headache and I don’t want to waste a patch if I don’t need one…ever the optimist. These patches have truly changed my life for the better. Days without headaches? Is this what the rest of you feel like every day? Damn y’all are living the good life.
We still notice that weather plays a role in my headaches. The barometric pressure changes are easy to pinpoint. I can tell you within an hour when it’s going to start raining…it’s a great party trick. This week, we had tornadoes on Labor Day and I truly thought I was dying. I curled up in the fetal position and cried. It was hell. Nothing helped. I was willing to let the tornado take me to Oz so I could ask the wizard for a new head. Living in Ohio definitely doesn’t seem to agree with me.
My 30 year journey with migraines has taken a few detours that I never expected. I went down some pretty terrifying roads and totally ignored the “Road Closed” sign two years ago. This has been an exercise in patience and sometimes frustration. But like I said last week…there’s always someone worse off than you. There’s someone out there who would love to have your worst day. No matter what, I am going to keep pressing forward in hopes that I’ll once again have months where I have no headaches. I’m not aiming for hours, or days. I want to count the months. I’m greedy that way. And I’ll get it someday.
