acoberly

Ever since I was young, I would get the occasional migraine. It wasn’t too bad, as it typically happened about once every couple of months, I’d lock myself in a room, and be all better the next day. However, in August of 2020, I started getting worse migraines. They weren’t great, and were almost daily. I decided to seek medical intervention as they were interfering with my life. I went to a neurologist, who immediately noted the PTSD in my chart and prescribed me an antidepressant, to treat my migraines and PTSD. However, an important thing to note is that I did not have PTSD. I had also started seeing a new therapist around the time my migraines started, who diagnosed me with PTSD due to a traumatic experience, but looking back now I had no PTSD, just was rightfully trying to recover from a traumatic experience. But regardless, I started the antidepressants.

I started Venlafaxine, an antidepressant usually used to treat migraines. However, I hated it immediately. My migraines weren’t getting better, I kept forgetting to take it, and having to remember to take a med everyday with the idea that maybe, maybe, my migraines would disappear. And if they did, I would have to take this med the rest of my life. This instantly poured me into a horrible mindset where I was so overcome with despair, I resigned myself that this was a 100% physical issue and any idea of this being a non physical issue was flung out of my mind.

About three to four months on Venlafaxine, I went to visit my family in Arizona. At this point, I was pretty miserable. I hated taking the meds, I was all in on a super stressful job, and I was overwhelmed with school and working full time at a job I despised. My nightmares from that traumatic situation were also at an all time high, as I was ‘waiting’ for the antidepressant to fix them instead of taking proper steps to heal. So, when I took the plane ride to Arizona, my brain decided that this was the moment. The moment to fake an injury and launch me into a permanently distracted state of being for the next three years, so that I couldn’t focus on the deep rage and unease in all of that situation. I boarded the plane, took a Sumatriptan as I had gotten a migraine in the airport, and promptly fell asleep for the four hour plane ride. I fell asleep at an awful angle. Almost 90% angle with the neck, but nothing I hadn’t done before. However, when I woke up I had a dull headache almost instantly. It wasn’t too bad. I thought it would go away. We arrived at my family’s house in Arizona, on Christmas day, and it only got worse from there.

The headache persisted the entire week I was in Arizona. It never went away, Sumatriptan helped, but it never went away. I ignored it for the most part but by the end of the week it started to really bother me. I had a fight with my boyfriend over the phone, as I was in Arizona and he was back home in North Carolina. But, I decided that this headache wasn’t anything to worry about. And so I decided to live my life as if I didn’t have it. I decided to move in with my boyfriend that week, and we were in our own apartment for the first time, both age 18, in January of 2021. This was the start of my own personal hell.

The headache never went away. My boyfriend was so supportive, but both of us were in school, and I was still in my stressful job. I started going all in to try to get rid of this nasty headache, cause it was ruining my life. I started taking tons of different meds and vitamins. I tried propanol, topamax, chiropractors, and smoked copious amounts of weed to manage the pain. The headache never went away. I lived in that apartment for six months. During those six months, there was only one day where I had no headache. I had sat on my balcony of my apartment, staring at the sky, almost numb as I felt the pain in my head. Tears were streaming down my face. At this point, I was miserable almost 24/7. Well distracted from the internal stresses and pain, but miserable. I poured out my heart. I begged God on my hands and knees to take away this pain, even if for one day. Just to show me that he existed. To prove to me that he was there, and he was listening, and that there is hope. The next day, I had no headache. It felt beautiful. There was hope.

As quickly as the hope came, it almost felt as if it were shattered. I had gotten so used to this process of hope from a new med that leads to devastation, that it just felt like another day for me. I lost my stressful job due to taking copious amounts of absences due to the headaches and went back to my old job. This was a bit of a mental blow for me. I had gone from a prestigious engineering job at only 18 years old, back to being a hot tub saleswoman. However, I didn’t acknowledge this disappointment at all, and just kept fighting the headache as if nothing significant had happened in my life. I moved into a house with some of my friends as roommates. It was a fresh start, and it was fun. I was so briefly high on life that I contacted a priest, who blessed me and I was headache free. For two weeks, I lived with no headache. I was convinced that this priest had blessed me and now I was healed. However, that’s not how life works. To this day, I still don’t know if it was God or a placebo that gave me that two week break, but I’m glad I had it. It gave me time to enjoy living with my roommate, partying, laughing, and being a normal 19 year old girl for two weeks. But life doesn’t work that way. If it was that easy, everyone would be rushing to their nearest priest.

I lived in that house for another year with a headache. Roommates came and went. The headache slowly got worse and worse. I tried all the injectables. I tried experimental drugs. I tried nerve injections, I tried botox. I was diagnosed with occipital neuralgia. Every med I tried working for a day to a week or so, but with horrible side effects. Even if I was willing to endure the side effects, I became mysteriously immune to any positive effects from the drugs about two weeks or so into treatment. The constant up and down of elation, of thinking a new drug has worked, to crushing disappointment was too much. While driving to the pharmacy to pick up a med that just wasn’t working anymore, I tried to kill myself. I obviously failed. My heart wasn’t in it. I wanted to live so bad, I was just tired of the pain. I eventually ran out of drugs to try and found myself incapacitated in a bed at my mom’s house. I couldn’t sleep laying down so I slept in a hospital bed that could rotate up. I was 20 years old. My boyfriend sat down on the hospital bed with me. He said, “I can’t do this anymore.” I was devastated. Me and him both knew what would happen if he broke up with me. I would kill myself. He was the one taking care of me, he was my everything, my lifeline to life. But he was only 20. I was only 20. He didn’t sign up to take care of a bedridden girlfriend when he started dating me in high school, when we would sneak away and skip class to explore the woods and go on adventures together. I begged him, I begged him so much. To please, please, don’t leave me. He agreed to give it another chance. But both of us knew that we were on thin ice now. My brain realized the situation it had put itself in. If I didn’t find a way to get better now, I would die. He would leave, and I would kill myself. So, it found something to grasp onto.

I tried shrooms the next day, and the headache went away. For two days. I was elated. It was hope. I started a rigorous microdosing regime with mushrooms. I actually got to a point where I could function in life well. I was having about one headache a week. My relationship with my boyfriend got better. With the pain gone, I could see how unhealthy my dependency issues were. I learned to become more independent. He learned to take the time he needed so he wasn’t my primary caretaker. However, as everything goes, not everything good lasts. The mushrooms stopped working. I don’t know why, but my brain just became immune to them, like it had to anything that had worked before. I kept trying things. Vitamin combinations, muscle relaxers, and more. I found a new doctor. He was kind. He was the first doctor to tell me that “You can get better.” And I hung onto those words like they were my lifeline. He told me to try yoga. The yoga helped drastically, but I still didn’t put the pieces together. I thought the yoga was helping because of the stretches on my occipital, not the deep breathing and clearing of my mind.

I quit my hot tub saleswoman job after four years. They wanted me to become a partner in the company and I couldn’t. I was 21 now, and I still felt too young to dedicate my life to this job. It was deeply stressful, and I hated sales. In a very spontaneous move, I decided to backpack Europe in hopes that the changes of scenery and life changing experience would cure my headaches. It did not. Europe was great, but I totally had a headache the whole time. I came back, and decided to use my new unemployed time to 100% dedicate myself to getting rid of my headaches. I tried yoga, I tried new chiropractors, and finally decided to try a rigorous, expensive, physical therapy program. At this point I was convinced it was occipital neuralgia, and my neck muscles had become so tense over the last three years that they wouldn’t ever untense without physical therapy. I got constant massages. I was told at the physical therapy orientation I should see improvement at around six weeks. Six weeks in, my headaches were the exact same. At nine weeks in, I sat up and asked my physical therapist, “Isn’t this silly? That I’m only 21, and I have this insane chronic headache that won’t go away? Have you ever seen anyone with occipital neuralgia this bad, that they got from simply sleeping wrong on a plane one day? Does that even make sense? It wasn’t even my occipital muscles that got tensed on the plane. You can’t sleep on a plane for four hours in a funky position and end up with pain like this. I see people everyday bent over looking at their phones like they’re trying to break their neck, and they have no pain.” My physical therapist didn’t have an answer for me.

The next day I was sitting on my front porch, thinking about what I had said the day before. I decided to go on my daily doom-scroll through reddit, and see if anyone else had similar thoughts on r/occipitalneuralgia. No one did. But, someone had commented on a post that day. The comment went like follows - Download the app curable. It’s saving my life. Literally. I was beyond hope. I have had a headache for 37 years and with multiple dislocated and broken bones, my body has been screaming at me for decades. It takes work. I do find that 20 minutes a day of doing the meditations and brain training have done more for me than any drugs have. This one comment changed my life. I downloaded Curable that day, while sitting on the porch. I was inspired but still hesitant. I decided to go on a walk and as I walked through the woods, listening to Curable on my headphones, my pain went down. I decided to take it a step farther. If this was real like it said, if I could truly control my headaches like this, then I was going to take action, right here, right now. That same day, I drove to Cookout and got a big fat juicy burger, and large sweet tea with milkshake. Food I had since been terrified of due to a weird idea that sugar makes my headaches worse. I scarfed that down and almost cried, it felt so exhilarating. After Cookout, I drove to the store. I bought a pack of PBR. My number 1 worst fear was alcohol. Even smelling it or looking at it would give me a headache. If this gamble worked, it was proven to be a psychological headache. I got home. I stared at the PBR. I said, “You will not hurt me.” I used some Curable techniques. And then I laughed at the concept of me being afraid of a beer can, and I downed that beer. It was the best tasting beer I’ve ever had to this day.

Armed with this hope, I took action on taking back my life. I found John Sarno. Alan Gordon. Nichole Saches. I journaled. I made a journaling technique. I wasn’t afraid to tell people I had TMS. I called my physical therapist back, after ghosting her for a couple weeks. I said, “I have a condition called TMS. It means that my headache wasn’t actually occipital neuralgia, but a physiological headache. I won’t be coming in again.” I started taking the time to actually heal from the traumatic event that had happened right before my headaches. I worked on properly managing my stress. I went back to school. I sat down with my boyfriend, who had been diligently by my side this whole journey. The entire four years now. And we got engaged. I am now 22, and I am not perfect. I still get a headache here and then. But I won't give up. I have a new outlook on life, and every day, headache or not, I grasp with all my fury and give it my all. I love life, and I am so glad I went through this chronic pain journey because it taught me how to feel like ME, again.


Additional Notes -

I have a breakdown of my entire TMS healing process I can post or link to if people want! Here's the link - https://docs.google.com/document/d/1l2qpp5gb0RERVcpzI81-CbbJClU4ShJ_ypZG6wL4SgI/edit?usp=drive_link (3P Program)