If you’re going to read this, make sure you’re comfortable. This is a long one.
A little break from our regularly scheduled programming… I’m posting this here because I have had a few people thank me for telling them about my “odd” migraines, as they have similar odd migraines and thought they were the only ones. I was fortunate to know this type existed before I had my first, but I also feel relief when I find people who know what I am talking about.
Before I launch into it though, I need to make something very clear. I AM NOT A DOCTOR. I have a diagnosis from a neurologist following a CT scan and a night in the emergency room for observation to back up what I experienced. This is intended for other people who have undergone similar testing to rule out anything else and have this diagnosis, as once you know what it is, it can still weird you out a bit. If you experience symptoms anything like this for the first time, they are nothing to be trivialized. There are too many possibilities as to what else it can be, so get yourself to the nearest emergency room and get checked out. IMMEDIATELY. Do not ever ignore anything going on with your brain, it is far to precious.
I’m going to give a little bit of background to start, because the one thing I keep coming back to when I think about it all is that I have no previous history of migraines before 2 years ago. I don’t even have a history of a lot of regular headaches. Even now (and I am knocking major wood for this, because I know I am very lucky) when I have a regular headache, it takes me a while to figure out that’s what is bugging me and I can actually take a pain-killer to help chase it away. It’s partly why I was so surprised to get this diagnosis, it felt like it came straight out of the blue.
The first migraine I experienced was 2 years ago, almost to the day, at age 34. When it happened, I was worried it wasn’t a migraine and I’ll just list my symptoms so you can take a wild guess as to what it seemed like I was having: It started with an ice-pick pain behind my left eye and a few minutes later there was pretty much a line down the middle of my visual fields, with the right side dissolving into zigzags. I couldn’t make out the words I was reading, because I could only see half of them, no matter where I looked. I was very lucky to be staying at my parents’ place at the time, so I was able to tell my mother I was lying down because I was having a weird headache. Went back to lie down and suddenly realized I couldn’t bring certain words to mind. Now, I have word-finding issues at the best of times, but this was different. I don’t have a good way to describe it, but I wasn’t looking for difficult words and had the sense of what I wanted to think, but could not get the word in front of me. I then tried to speak out loud and realized I couldn’t get the words to come that way, either. I remember just trying to say out loud something like “Is this a migraine,” and while the word migraine had finally come to mind, it came out like “mih-GRAIN” — all wrong (for Canadian English, at any rate– generally, we say it as “my-grain” and I was hardly in a mood to be fancy).
I work in allied health care. I have some knowledge of neurological symptoms. This was enough to get me properly scared. I went back downstairs, but could not get anything out to my mother beyond “I can’t…” and finally, “I’m scared.” Fortunately, she is a smart enough woman to catch on quick and we were checking into the emergency room in record time. Neither of us would say it to the other, but I know she was just as worried as I that it was a stroke. Before we left the house, I was even feeling a weird sensation down my one side.
It is an odd thing to consciously watch oneself go through a bunch of stroke-like symptoms in rapid succession. It was like I was watching from the back of my mind, in some far recess of my head. I was even picturing the commercial that is on TV here from time to time describing the symptoms to watch for, complete with the out-of-tune music; do you know the one? Back there in the back of my mind, part of me was thinking of other people my age who I had heard of having strokes, thinking about how I might be affected, how this would affect my family. Wondering just how the rest of my life was going to look. Because when this happens for the first time, you go there. Or at least, I did. Maybe it’s related to my job, but it did cross my mind. The other part of me was able to take comfort in the fact that I could still think and I still had my executive functioning — I knew I needed my purse, coat and boots before we got out the door, I knew where each was, and I got them all together and on myself (because I likely would not have been able to get the words out to my mother as to where they were). Also, while there was some tingling in one hand and leg, they did not lose function. I scaled the stairs two at a time to get my purse and I did not feel wobbly (beyond the obvious) or unsafe. Again, this was my experience, I don’t mean for it to be any kind of guide as to what anyone else can expect — mine have been different every time.
My vision cleared and my words came back in the car. I don’t remember when the pain left, but I am fairly certain that it was gone even before we left the house. We came into the emergency room at a good time (uncrowded) and while there was a wait, it wasn’t major. I suspect that because by then I could describe my symptoms myself, the staff knew that I needed to be seen quickly, but not immediately. It just felt good to be somewhere where help was on-hand if we needed it. I had a CT scan and spent the night for observation. I saw the neurologist in the morning, who gave me the diagnosis of Migraine with Aura. I was pretty surprised at the diagnosis and told him my reasons — no significant history of headaches, nothing like this ever before — but apparently age can be a factor in the onset of migraines (thanks for yet another reminder that I am getting older, brain). I have spoken with others since who have had that as well. Nothing until such-and-such an age and then they hit.
I did not and to this day do not (knock wood) experience the indescribable pain that a person who experiences typical migraines (and sometimes these kinds of migraines as well) has. The neurologist gave me some recommendations of things to do for any subsequent migraines I have, but I am not going to share much of them here lest they be taken as medical advice for anyone else. Suffice it to say that beyond contacting his office for additional medication should they worsen, it was mostly preventative medicine for the one in a bazillion case that the symptoms might be more stroke- than migraine-related. The one biggie being that if symptoms lasted longer than an hour, that I was to get to an emergency room. I made an appointment to see my family doctor to discuss things after this happened and I would strongly urge anyone else who has had this happen to do that as well. I did it to let her know what happened and be better able to advise me as appropriate. Mine was very sympathetic to my questions and concerns and really helped me to feel better about the whole thing in general. I hope you are as lucky.
I had a few worries afterward, mostly to do with being alone and doing anything remotely responsible. What if another one hit? For instance, it took me a while to be fully comfortable driving again. I got back on that horse right away, but it was 2 to 3 weeks before I was fully comfortable being out by myself. To this day, a small twinge can put me in full-on “I DON’T THINK SO! No way is that happening now!” mode when I am driving. I am sure I am fun to watch in the car. What I have decided to do is take each day as it comes. You can’t live your life in fear. Just live your life.
I had another smaller one in June of that year, where only my vision got wonky. Until last week, I really hadn’t had anything since. Last week though, my sleep schedule had been allowed to slide and I got some bad news that I wasn’t allowed to share right away. At the end of that day in the middle of a meeting, I realized I wasn’t seeing people’s faces properly — the bottom half was sliding away to the left and I couldn’t see all the parts at the same time. Words were similar — I knew I was spelling them properly, but I couldn’t make out all the letters. I kept my words and I was able to make it to the end of the meeting (it was almost over as it was) to tell a coworker what was going on. I managed to pick the one person who could empathize because she had been through it and she actually thanked me for letting her know others have this happen (hence this post). She brought me to her home until the symptoms cleared and I felt I could drive. It was on a different side, so the symptoms were a bit different. After the zigzags subsided, I had a numbness start at my left thumb and move its way through my hand systematically, finger by finger and then into the palm. It was a very weird sensation.
To keep my mind off things, I tend to nerd out with it a bit and distract myself by going over my (limited) neuroanatomy rememberings while it happens. I let my co-worker know what I was experiencing, telling her I felt a little like a hypochondriac doing it, but her point (and it’s a good one) was that if another trip to emerg. was needed, she’d be able to tell them all I experienced if I couldn’t. That’s the thing about these migraines. Every time I have one, I have to be on my guard that perhaps this time, it’s something else. Knowing what it likely is helps immensely, but it didn’t stop my heart from nearly jumping out of my chest in that meeting when I realized what was happening.
I have several theories as to what might be a trigger for mine, but the one seems to come up every time is sleep. Or more so the lack thereof. I had been letting myself stay up later and later while still getting up early for work. I just can’t do that anymore and I have to get tough with myself on that one. Also, I am guessing the earlier stress of the day did not do me any favours, and the later nights may have been related to something causing me stress that I was distracting myself from. With respect to anything hormonal, they are all over the map, so for me I don’t think it is a factor. I have been through some pretty changeable weather these past two years, with no discernible effect. Again, we are all different. Find your triggers and help yourself to minimize them.
There are a few things that I do to help myself keep track of this stuff. There is so much that is hard to control with these things, anything I can do to make me feel like I am helping myself helps me to feel better about them in general. First and foremost, I make sure I keep a migraine journal, where each incident is written out in as much detail as I can remember. While I would rather be done with the whole thing and not think about it, it’s so important to help you keep them all straight and remember what you had when. I record all the symptoms, which side the migraine was on and everything that took place. This helps me and my doctor stay on top of things. One other thing I do when I am travelling, is make sure at least one person in my group knows about the migraines and what I do for them. I just tell them if they see me pulling out a certain thing from my purse, that I am having one and to just help me keep an eye on it. I also keep a card in my wallet with a short explanation of the type of migraine on it and a request for help in case I am somewhere where I need to ask a stranger (i.e. flight attendant, person behind a counter, etc.) for help and I have lost my words. These are just my strategies, we all come up with things that work best for us.
I will fully admit, it had been such a long time since I had had one, that I had hoped I was done with them. Alas, this is apparently not the case, but my experience has been pretty minimal so far (KNOCK WOOD), so I truly cannot complain. Even if no one else finds this post, it’s just been helpful to me to write it. To own this as something that is a part of me and is not something I can just push away. One of my worries before this was what would happen if I had one anywhere other than home and this experience has led me to know that I will be okay, which I am thankful for.
So if you are coming here looking for others who experience this kind of thing, know you are not a freak. Or at the very least, you are not the only freak. Since this happened, I have found out that there is a history of migraines in my family and that my cousin has experienced something similar, as have a few of my friends. Talk to people. Tell them what has been going on with you. At the very least, it is good to have people who you trust know what is going on so that they can help you. However, in doing so, you will likely also find people who can empathize with you, who know exactly what you are talking about and this is so helpful. Know you are not alone. Take care of yourself.