Today’s post is a little ways off from the topics I’ve been writing about. I knew when I started this blog it would be something I had to write about because it’s been a part of my life for a long time. This is for all you migraine sufferers out there. Here is a sister who can absolutely relate.
Migraine. The word is a taboo. It’s unspeakable. I’m not a superstitious person but I am convinced that every time I talk about migraines I get one within the next day or two. That cannot just be a coincidence. I will probably get one right after writing this piece. But if writing about this helps those who do not get them understand and those who do get them feel like they can relate then I guess it’s worth it. Who am I kidding? No migraine is worth anything.
Migraine. Don’t your eyes vibrate when you read the word? Don’t you hear crumbling mountains in your head? I do. It makes me shudder. It shoves itself in your face as it gets bigger and bigger.
Migraine
Migraine
MIGRAINE
I have been getting migraines now for fifteen years. I think that qualifies me as an expert sufferer. Please, don’t give me a prize or a medal. I’d rather not be so familiar with these monsters. I wouldn’t wish them upon my worst enemy (or maybe I would). So, what exactly is a migraine? I asked a few friends and family (non-sufferers) what the definition of a migraine is and these are some of their responses:
- A headache that can affect vision. Also may cause nausea and body aches.
- A severe headache.
- Light sensitive, painful headache not relieved by regular pain medication.
- A severe headache with temporary loss of vision and nausea.
I agree with all of these definitions, however, they are missing so much more detail. Migraines are life altering, debilitating, and absolute torture to name a few other words. One of my neurologists told me that everyone has a different “experience” with migraines. While many of the major symptoms are similar to most sufferers, everyone has a different encounter. Even my “experience” is different from migraine to migraine.
The Beginning
I started getting migraines in my early teens. Of course I didn’t realize what they were at first or that they would continue on for so many years. In the beginning they came like clockwork, every Saturday at 10:00am. What a way to look forward to the weekend, huh? This was such a crucial time in my social life. Ages twelve and thirteen were prime years for the Bar and Bat Mitzvahs, the parties, the PLACE TO BE. At that age, especially as a girl, this is what you lived for growing up in my town. Unfortunately for me, I had to miss out on some of the best celebrations.
They started with blurred vision. I would immediately panic and cry. What was happening to me? Why was this happening to me? One of my good friends was the first Bat Mitzvah I remember missing. She came from a wealthy family so I knew her Disney themed party was probably going to feel like you were actually at Disney World. Who knows, she may have even had Mickey Mouse show up. I wouldn’t know. I wasn’t there.
Later that year, I distinctly remember being at my best friend’s Bat Mitzvah when I felt one coming on. My whole family was there to celebrate. I mean, this was my best friend so it was a pretty big deal. I tried so hard to fight it off. My parents brought me down to the basement of the venue where they gave me Advil and water while I decided what I wanted to do, stay or go home. Like I had a choice. The migraine had already decided for me. While I waited for my grandfather to pick me up, I painfully put a smile on my face for a few important pictures. I was heartbroken and devastated to miss the rest of the party, but it was a good thing I left because as soon as my grandfather picked me up I vomited in his car. Good thing I took a garbage bag with me.
That is how the next few years went. Blurred vision was my warning sign that the migraine was coming. It would last about half an hour before a thunderstorm of a headache came on. Along with that was severe nausea. More often than not, I would throw up and feel a little better. No matter, I was bedridden for the day and suffered the consequences the day after. Migraines left me feeling fatigued, weak and pretty much like someone beat the shit out of me.
I have memories of trying to sleep them off in my parent’s bed because, when you’re younger, your parent’s bed is bigger and better than yours. My body temperature would get steaming hot and icy cold within a minute and I would constantly throw the blankets on and off myself in discomfort. Sometimes I would fall asleep on the bathroom floor because I was so scared I wouldn’t make it to the bathroom in time to throw up in the toilet. Also, moving around too much would just make the headache worse.
It’s sad that these are the things I remember instead of having good times with my friends and family.
College Years
Toward the end of high school and into college the migraines were less frequent. I actually only have one significant migraine memory while I was in college. During my freshman year I felt one coming on and tried to sleep it off. But when you’re living with a roommate… in a noisy dorm… that is attached to the dining hall… that is on a busy street… there is no quiet place. It finally got so bad I dragged myself over to Health Services where I waited in pain until they called me in. I don’t remember if I saw a nurse or a doctor but whoever she was clearly did not have experience with migraines. She asked if I’ve ever taken Imitrex, a medication used to treat migraines. It is most commonly taken in nasal spray form. I told her that I have taken it in the past and I did not like the way I reacted to it. Imitrex sped up the migraine, meaning after choking on the spray that went up my nose and down my throat, the headache and vomiting would get more intense before dying down sooner than it normally would. It must have been her only solution because she decided she was going to give me Imitrex whether I liked it or not… as an injection. I had no idea that was even possible. I was so miserable, though, that I had nothing to lose. Actually, I had a little to lose. Immediately after she injected the Imitrex into my arm I could feel it go through my body. My entire body started to tingle and I felt a weird sensation and asked, “Should this make me nauseous?” (Nausea was actually not a side effect of this particular migraine. Remember, every experience is different). Before she could finish telling me that it shouldn’t make me nauseous and I should feel better soon, blah blah blah, I bolted off the patient table and threw up in the garbage can. It was almost like I had to prove her wrong, like, YES! I knew I would throw up! You don’t know what you’re doing! Needless to say, I never went back to Health Services for a migraine again.
Causes and Symptoms
Throughout college, and even after, I would get a migraine about every other month. Not terrible regarding frequency, but they were terrible experiences. One of the hardest things for me is not knowing the cause of my migraines. People always ask – Is it something you ate? Is it something you did? Is it hormonal? No. No. NO! After a while these questions get annoying because it’s like the person asking is trying to treat me when, after fifteen years, the person asking is not going to be able to do anything for me but condemn me to another migraine. But I swear I’m not superstitious.
When it comes to figuring out why I get migraines I’ve tried it all. I’ve tracked my menstrual cycle, logged my diets, kept a migraine calendar, used a migraine app on my phone, and more. Since I’ve had migraines at all different times of the month I’ve ruled out any hormonal relationship. I noticed that after eating certain foods known as trigger foods (i.e., chocolate, apples, caffeine) I’ve had migraines. But then there are many times where I eat these foods and I am fine. My current neurologist told me there is no study that has directly related food to migraines. So that rules out food. I still keep a calendar (when I remember to) but have never used it. Honestly, when am I going to go back to January 4, 2005 to check if I had a migraine that day? After fifteen years and no constant to follow, keeping a calendar is a waste of time. I even printed out the reports from my migraine app which tracked my migraines, including their severity, duration and other details along with what I ate and my medications and brought it to my doctor at the time. He laughed in my face and didn’t even look at the charts. That was the last time I saw him. I also deleted the app after that visit.
At least my body warns me when a migraine is coming. I guess that’s considerate. About 95% of the time I lose my vision as a warning that the migraine is on its way. It literally happens in the blink of an eye. Usually it’s only one eye but sometimes it’s hard to tell. It’s not a total blackout. Sometimes I see floaters while other times it feels like I’m looking through a kaleidoscope. Either way, I can’t focus my eyesight on anything directly in front of me. This usually lasts for about half an hour, typically enough time for me to pop two Excedrin and get myself into bed. Again, how considerate of me.
As my vision slowly returns, I feel the headache come on slowly but hard. It is an indescribable pressure. I’ve had it in the front of my head, on the side of my head and above my eyes. My head feels heavy, like a ton of bricks has been placed in your skull and is pushing its way out. When I first started getting migraines they were always a bad headache. Nowadays, I never know what I’m going to get. Sometimes, the headaches are not too bad while other times they are unbearable. On the days the headaches are not too bad I generally stay in bed but am able to slowly walk to the kitchen if I need to get myself a glass of water. On the days where the headaches are at their worst, you will find me in my comforter-cave and you better not speak to me. The pain is so bad that even a pinky twitch will set my brain on fire. Leave me alone on these days. Don’t even speak to me. I’m not being rude. Your words are like knives to my brain. It physically and mentally hurts to even think about speaking.
As I said before, you will typically find me in my comforter-cave because it drowns out sounds and makes the room as dark as possible. Depending on the severity of the migraine determines the amount of noise I can take. Either way, the volume should be as low as possible. In general, I have sensitivity to light. If I catch the glare of a car or look at a light I’ll have floaters for a while. Sometimes this gives me anxiety because I don’t know if it’s the start of a migraine or just a reaction to looking at the light the wrong way. I try not to focus my eyesight too much on anything. I hate staring at a computer screen all day and then watching TV all night, but even reading a book or concentrating on a project is still putting my “eye energy” into one focus. I get wary because I don’t want to bring on a migraine by focusing too hard which is why I try to do a variety of different tasks (i.e., watch tv, do a project, cook dinner, go on computer). These use my “eye energy” in different ways for shorter periods of time.
I almost always threw up when I first started getting migraines. It was a pattern I could rely on. Lose vision. Headache. Throw up. Fatigue. Feel better. Over the years, I’ve been throwing up less and less but am always nauseous. On the one hand, it’s great to not have to vomit because, well, that’s just disgusting. On the other hand, it helped speed up the process of the migraine and made me feel a little better after doing so. Now, I get brutally nauseous for 4-6 hours. I also get a stale taste in my mouth, which doesn’t help the nausea.
Lately, although not frequently, my left hand becomes numb and tingly at the same time. I know that doesn’t sound right but it’s the only way I can describe it. My hand swells up and feels like it could explode which is what makes it tingle. However, if I try to touch anything, I can’t feel. Once, my mouth even became numb. I got so nervous that I was going to have a stroke at the same time as my migraine.
I don’t know how they do it but migraines suck all the life out of you. I lay in bed all day, not exerting any energy, but it still has some way of completely draining me. This is the longest lasting effect of getting migraines. I feel weak and tired throughout the migraine and for days after. Sometimes getting around the house, walking up and down stairs is exhausting. It takes a big breath and a lot of energy just to roll over in bed. Migraines leave me feeling sucker-punched and tired. And being tired leaves me feeling more tired. It’s a vicious cycle which is why it’s so tiresome.
Missing Out
As you can imagine and as I’ve already explained migraines ruin your entire day. My older cousin was the first in our family to be married. I remember being so excited to attend her engagement party, an event I’d never been to before. And, guess what. I missed it. I was heartbroken that I couldn’t share this special day with my cousin and my family.
Migraines have also affected me during work. Migraines don’t care that I need to do my job in order to get paid and live life! I’ve had to leave work multiple times in the middle of a project, an email, and meetings because I felt one coming on. Sometimes I have to lay down in the back seat of my car for half an hour before I can make the hour drive home from work.
My point is it doesn’t matter what you have planned for the day. You immediately drop everything and go to bed. No talking, no sound, no light, no nothing.
I know this post was information overload, but hopefully if you are not a migraine sufferer you have a better understanding of what we go through. And if you are cursed like I am I hope that you can relate and find this post comforting in the sense that you are not alone.
