April 14 has new meaning to me now. Each year, as it approaches, I am reminded of how my life has been forever changed and how I am beyond blessed. Since my aneurysm ruptured on April 14, 2018, my life has changed in ways that I could never have imagined. Each year since has brought new challenges, frustrations, fears, anger, growth, and promise. And through it all, I have somehow managed to find a peace that was missing in my life prior to this disaster.
I struggled with defining myself after being declared unable to work. Who was I if I wasn’t an IT Leader in Supply Chain Process Improvement? Who was I if it didn’t say “Project Manager” after my name? It was an obstacle that was impossible to leap. I couldn’t just be someone else…even when my brain refused to do the job anymore. I had a list of medical problems that seemed to grow daily, and yet the definition of who I was is the thing that bothered me most.
I knew who I wanted to be. I wanted to help others. I wanted to walk back into the flames carrying water for others who needed the help. But when I looked in the mirror, I didn’t believe that I had the capacity to help others. I wasn’t strong enough, knowledgeable enough, and where would I even start? But even before my aneurysm, I had always talked about feeling as though there was something missing in my life. I wanted to help people. I wanted that to be my life’s work. I started tweeting about awareness. I started sharing statistics. And finally, some amazing people jumped into my life and asked if I was ready for advocacy.
I started writing my blog to share my experiences with my recovery because, while every recovery is different, sometimes survivors need to know they are not alone. Sometimes, survivors need to see that a symptom might match theirs and maybe their care team hasn’t looked at it the way mine has…or maybe they just want to know that other survivors have bad days and cuss and throw things too (believe me, I do). I’ve also been extremely blessed to write for a few publications to share my perspective to get my voice out there even further. And I have been honored to help a few families whose loved ones were in the hospital following an event when they have needed support. That has been an extremely humbling experience to be trusted with their hearts as they navigate this new journey.
I may not be changing the world, but with each action of advocacy, I realize that my heart is full and I have found a peace that I never had during my career. Oh, don’t get me wrong, I still struggle and have my moments of wishing for my “old” life, but that wish is nothing more than longing for a life that isn’t filled with the complications of daily migraines, seizures, hypothalamus dysfunction, and whatever other medical problems they want to throw at me. There are moments of weakness when I just want it all to go away…I am human, after all. But when I really sit and think about it, three years ago, on April 14, 2018, I was not only given a miracle of a second chance at life, I was given a miracle of happiness.
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.
Hi, everyone! Thank you for joining me. I am Michele Cozadd and I am a survivor. I feel extraordinarily blessed to still be here and I felt that it was important to give back to the survivor community, as well as help myself through my recovery. I decided to start my advocacy with this blog so that I could document my recovery and tackle topics that are critical for us to talk about openly and honestly (sometimes those conversations will be raw and full of ugly crying, sometimes they will make you laugh and full of self-deprecating humor)…topics that are often ignored or overlooked by our medical teams. This isn’t easy. Recovery isn’t easy, but I hope that you will find you are not alone here. I hope that together we can find peace and healing. I look forward to this journey…
I had spent 20 years cultivating a career I hated. It’s crazy to see those words in black and white. I remember driving to work each morning and home each night, watching other drivers, and wondering if everyone hated working as much as I did. I was constantly anxious, I had so much stress, and I couldn’t cope any more. I kept telling myself that the money was worth it. I had done everything I was supposed to…I went to college, I got a master’s degree, I got a job and worked my way up the corporate ladder into a leadership position. So why was I so miserable? Clearly there was something wrong with me for wanting more out of life. I was planning my retirement 20 years before I could actually retire…I had decided to get my real estate license, learn real estate here and then move to Hawaii and use that to make some extra money after I retire. Until then…I’d keep working at a career I despised.
I’ve had headaches my whole life so I just learned to deal with them. They became pretty common with a stressful job. I never thought about the toll it was taking on my overall health. There was no indication that I had anything to worry about.
Despite living with migraines, the headache that hit me on March 13, 2018, is etched in my memory. There was something different about it and it changed me. I had gone out to dinner and came back home and was watching TV when my cousin called. As we were talking, everything went sideways. The room was spinning, my left arm felt weak, and I became suddenly nauseous. My cousin instructed me to get on the floor to raise my blood pressure as he thought my BP had bottomed out. I managed to get on the floor and rest my legs up on the seat of the couch, as instructed, and it went from bad to worse. I managed to hang up the phone and scream for help. Laying on the floor I began to projectile vomit and cry. The pain was unbearable. My husband sprinted up the steps looking for me as I attempted to get up. I needed help walking to the bathroom. My body failed me. The bathroom was spinning, I couldn’t stop throwing up, I had lost control of my bladder, and it felt like someone was hitting the back of my head with a baseball bat. It was the worst illness I had ever experienced. As the sickness started to slow down, I was able to regain my composure. I managed to climb into the shower to clean myself up and we talked trying to figure out what had happened. I’ve never had any illness hit me so violently or so suddenly in my life. It had to be a bad bout of food poisoning. It was the only thing that made any sense. After my shower, I slowly made my way to the guest room to sleep for the night. I didn’t want to go to the ER, it seemed like it was just food poisoning. I’d sleep it off and see how I was in the morning.
When I woke up the next day, I still felt dizzy, but I wasn’t sick anymore. The headache was still brutal. It felt like the Indians were using my head for batting practice. I’ve never felt repeated pain to the back of my skull like what I was feeling with this. As I sat up, my husband came up to check on me and asked how I was feeling. I told him I thought we should go to the ER. If I ask to go to the hospital, you know I need to go. So off we went to the hospital. I explained my symptoms and said that I had thought it was food poisoning, but this headache was just so intense. The doctor came in and after going through everything he determined this was just a really bad migraine with extremely high blood pressure. They gave me a migraine cocktail of drugs and recommended I follow up with my primary care doctor about the unusually high blood pressure. We left the hospital frustrated but hopeful that the medicine helped and I could get some relief from this headache. When we got back home, I crawled back in the guest bed and went to sleep.
The next day, I still had no relief from the headache but I needed to go to work. I managed to force myself to function enough to drive 27 miles to my office in rush hour traffic. I had no idea how I did it. I was praying for death because the pain was debilitating. How was I going to get through the day? Part way through the day, I called my family physician and explained what was going on. I told them I needed to see the doctor about my blood pressure. My dad dealt with high blood pressure so I was no stranger to the issues. I hoped that this was just a fluke and not the start of a permanent issue. They were able to get me in with another doctor the next day at lunch. I was hoping they’d be able to get me relief. So again, we waited.
At the doctor’s office the next day, we explained everything that had happened the last few days and how my headache was no better and my blood pressure had been significantly elevated in the ER. The exam was quick. There was nothing more they could do for my headache since I had gotten the headache cocktail in the ER. And although my BP was pretty high, the doctor felt that it didn’t warrant going on any medication for first time symptoms. They encouraged me to monitor it and go home and rest as much as possible until the headache passed. On the way home, I cried. The pain was so bad and I was so frustrated. I felt like I was being ignored. Like I didn’t understand my own body. I KNEW there was something wrong. This headache wasn’t normal. But I had no choice so I went home, took more pain meds and crawled back in bed.
The next day, I returned to work and tried to function. I was the IT manager on site at a distribution center. My days were filled with meetings and problem resolution out on the DC floor. It was a chaotic job that was highly stressful. I had a new boss who wasn’t impressed with things. He was offsite so I spent so much time making sure he understood how we operated there. The stress levels kept getting worse. That had to be why I was getting these headaches. What else could it possibly be.
Ten days later, I had my normal follow up with my neurologist to deal with the usual migraines that I started getting again when we moved back to Ohio in 2012. I still had the headache so figured he would be able to help me. I told him everything that had happened. He did his normal assessment, looked at my eyes, checked my strength, and asked me to walk down the hallway so he could check my gait. He told me that this was just a really bad migraine cycle and he recommended an occipital nerve block in the back of my head. I agreed. I would’ve sawed off my arm if it took this headache away. I was concerned because I’ve never had a headache so debilitating that it stopped me in my tracks like this one. I remember dealing with migraines in college while I was writing term papers. I still remember leaning over into a trash can to be sick, and then start typing again. I’ve always powered through them, knowing that they would only last a few days. But at this point, we were already 2 weeks into a cycle that was worse than anything I could have imagined. The doctor and nurse returned with my shot and gave me an injection in the back of my head that I swear was an ice pick directly into my skull. I could hear grinding inside my head with every push of the needle. Not a pleasant feeling, but if it gave me relief, I’d deal with it! They had me wait for 20 minutes to start getting some relief and I laid there in the dark room on the exam table and prayed for peace and a night that was pain free. In 20 minutes, they came back and asked if I was any better. I told the doctor there was no difference and he told me that wasn’t possible. If I didn’t feel it yet, just wait…I would. And so I left. Hoping that promised relief would find me soon.
The days ticked by in the slowest hours I have ever experienced. The pain just wouldn’t subside. Every day was like Groundhog Day. Each day, I’d wake up late, convince myself I was fine, drive to work, do as little as possible while sitting in my dark office, drive home, and crawl in bed. I couldn’t function unless it was absolutely required. There was no extra time spent in the office, no working in the evenings, I ignored emergency work calls at night because I literally could not function. My head hurt to touch. It felt bruised. I prayed for relief, even if it came in the form of death, just relief. I lived this day for another few weeks until I woke up on Saturday, April 14, 2018, without a headache. FINALLY! After more than a month, the cycle finally broke! And I couldn’t be happier because that day I was supposed to drive 3 hours to my niece’s bridal shower and I was so excited for her! I was so glad that I would be able to enjoy her day!
