My Almost Eleven Year Journey With Migraines
Last updated: May 2023
Why I'm doing this?
I am doing this because I finally got up the courage to share my story after eleven years of suffering, research, and personal and professional trial and errors.
Why did I finally get the courage after so long?
One, I always felt alone with it. None of my friends had them and the only person in my family who had them was my grandma who lives in a completely different state, which is who I inherited them from through my mom.
Two, I finally found something that helps my migraines most of the time.
And three, I think my story could help others and even make others feel less alone just like other stories on this site have made me feel.
I was diagnosed with chronic migraines when I was 8 years old. These migraines would cause fatigue, nausea, vomiting, and the inability to function normally. I was basically bed or couch ridden until the excruciating pain, that felt like someone was taking a knife and scraping it on the inside of my skull, decided to cease on its own. At that time my father would give me a muscle relaxer that he had for his back problems. Normally it would knock me out for a few hours and when I woke up it would be mostly gone or at least tolerable compared to the full blown migraine that I was feeling before. I also remember that I had trouble sleeping at night because of the pain so my dad would lie in bed with me rubbing my back until I fell asleep.
Neurology Attempt One
Soon after they started we realized that we needed help. I needed help. So, we went to a neurologist with hopes that modern medications would fix the problem. After about 10 preventative medications in I really started to get discouraged. Every single one that I tried would either not help at all or help for about 6 months and then stop working. So, after about 4-5 years of these myriad attempts I didn't care anymore. I just wanted to give up. I felt like I would never find a cure or anything that could lessen my pain.
I Gave Up
I moved in with my mother and I ceased taking any medications. Even my allergy meds, but that's because the one dog we had didn't mess with my allergies and I barely went outside to get pollen near enough to mess with me anyway. I barely went outside because of my migraines. The sun and the heat were the worst and the cold would just cause my nose to stuff up, which could cause a sinus headache and I tried my best to avoid any trigger that I learned of by then. My triggers, that I knew of, were and still are heat, bright lights, loud sound (if exposed to for too long), physical activity, dehydration, hormones (combination birth control pills) and stress. All of these I could do what I could to avoid, but I have three other triggers that I couldn't avoid: menstrual cycle, neck pain/tension and lack of sleep. (The menstrual cycle trigger is common among girls and women.) My neck was and is always tensed up. I can do things to remedy it for a few hours or so, but it never really goes away. The lack of sleep was and still is caused by my sleep problems. I have always had a hard time falling asleep at night and staying asleep. I would stay up as late as 3-5 AM some nights and these were also school nights. If I went to sleep earlier than that, then it was a good thing. I normally wake up every now and then during the night or I have really bad nightmares that wake me up and have sometimes kept me up. So, combined with not being able to fall asleep in the first place, I was very tired a lot of the time and having migraines on top of it just makes everything so much "better." After awhile I tried about 3-5 different medications....again. This time prescribed just by my doctor though and still no relief.
My First Ocular Migraine
It was 2013 and I experienced my first ocular migraine. I was at home, if I remember correctly, and I just started to get this blurred and zig zag line on my left eye. It didn't last for too long and I didn't freak out because I knew that migraines could do that, but I later realized that it was just another type of migraine added on. Didn't have one again until about a year later in 2014. I wasn't home this time and that became a difficulty. I was in town 20 minutes away at my school getting books for my first semester of college. It started right before I was leaving, so, luckily I didn't start driving yet. Both of my eyes were affected by the blurred and zig zag line that I experienced before. After about 20 minutes of waiting for it to go away the left side of my face and my whole left arm started to go numb and became almost fully numb after a few minutes. Still I did not freak out because I had already researched what ocular migraines could do the first time that it happened and I knew it was a possibility. My sister and her boyfriend came to the rescue and took my car and I home so that I wouldn't be in danger. As soon as we arrived home I began to rest in my room. The symptoms were gone and I was feeling a bit better, then an hour later the vision symptoms and numbness started to return. Once they went away I cried. I didn't cry because I was scared of what just happened. I cried because I knew my migraines were getting worse as I aged and I can't stop them. I cried because I didn't want to even imagine how bad it would be or get later on in my life. I cried because I felt like I was an unfit human being for many things. I cried because I was tired of having to deal with the pain and the feeling that stayed days after, while sometimes still enduring another or the same migraine. I just cried.
The Light at the End of the Tunnel
Soon after that I caved in. My boyfriend of 2 years wanted me to try marijuana. I hated the thought because since I was born I was taught to hate it and to think that it would destroy my life, but he broke me out of those shackles that I didn't even put there and helped me find the one and only thing that has ever helped my migraines and a few triggers that cause my migraines too. Now, I'm going to be honest. It doesn't always help, but that's only if I let a migraine go on for too long without any treatment, which doesn't take too long since my migraines can flare up fast. If I'm without medications, marijuana or whatever I take doesn't help, then I have to counteract it with both smoking and taking medications, which doesn't always help, but what does always help a migraine? Nothing. Everything you try will be faulty at some point and won't help every now and then, but if it helps for the most part, then I advise you to continue whatever it is as long as it isn't harmful to you or others. Marijuana is my main migraine medication now. Preventative (to a certain extent) and abortive. This link was posted today on Facebook from this site and it made me feel brave enough to say these things. It isn't legal in my state though and that worries me. Not only can't I get a job because of my migraines, but I can't get a job because the only thing that helps my migraines is the one thing that so many people and our government thought to be one of the worst things that you could do. That is changing though and I can't wait to either move to a state where it is legal or have my state approve of it once and for all.
Neurology Attempt Two
I am now 18 years old and I'm about to be 19. So, yeah, eleven years of migraines and almost daily headaches and fatigue. Fun, huh? Anyway, I am trying neurology again. I have an appointment this month. And I already tried another failing modern medication.
Why am I trying again?
If my main medication isn't legal, then I need other options just in case.
My new neurologist has suggested botox. I'm not so fond of the idea because I've learned enough of psychology and of botox that I know what it does to your body. Personally, I don't find it safe. I am open to new perspectives on it and even suggestions of other options if possible though. So, I'm just going to go back this month and try another medication and we will see what it does.
It was horrible for me with the headaches and the fatigue. So, I began taking online classes from home in my junior year of high school and have been ever since. Even now in college. It creates more time for me to be able to have a migraine without having to stress about missing something in class because I was absent. I found my own way and it is my preferred way to deal with school and the difficulty that my migraines can bring to it.
My End Thoughts
I don't want to be judged for anything in this story of mine. I have done what I could to help myself and I'm sure many of you on this site will understand. I still have hope that things will get better, but I have to continue to stay strong no matter what because this disease can be so unexpected in what it will do and what it will feel like next. I thank my father for being there in the beginning and I thank my mother, and boyfriend of almost three years for being there for me through the rest and hopefully in the future as well. I am a teen that suffers from migraines just like everyone else who suffers. I may have my unique aspects to it, but we all have felt and gone through the same or similar pain. I don't have anyone in my life who really understands, and this and other migraine websites have been my way of seeing and learning that I'm not alone and that there is some hope left for all of us.
Do you have a migraine toolbox for when an attack hits?
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