Hemiplegic Migraine Q&A With My Partner - Part 2
My partner and I are here to finish wrapping up some Q&As about hemiplegic migraines, how my life is affected and asks how he can learn to better support me. I also have a few questions in return for him, as we discussed a lot. If you missed part 1 of this series, click here.
Working on a computer with hemiplegic migraine
You do a lot of work on your computer, does that affect “things”?
As you know, I work very random hours - a lot of that has to do with eye fatigue, the amount of time my eyes can handle reading a screen, or doing research. I have to shut my laptop and put my books and phone down quite often. My glasses are constantly coming on and off because I just can’t find a prescription (readers) that work for me. Part of this was a side effect of trialing Botox the doesn’t happen to many people.
Wearing blue light blocking glasses
Still, over the last 6 years, my eyesight continues to change constantly, so I have a pair of reading glasses in about every strength. All of my glasses are now blue-light blockers, that help prevent further strain when I am looking at my computer, on my phone & even watching TV sometimes.
Living in the darkness
I know you notice and probably thought I was a bit nutty (but you know that now) when we first started dating and I nearly always had my drapes drawn at least 1/2 way or 3/4 of the way all the time. In time, I eventually told you I’m not a vampire, but there is a part of my brain that would prefer I live completely in the darkness to avoid and prevent any worsening of my symptoms. There is also a special type of glasses called Theraspecs, which are amazing for Migraine patients.
Hemiplegic migraine attack must-haves
Is there anything that particularly helps you when you are having a migraine?
McDonald's salty fries & coke. I've told you this before but growing up, my mom really struggled with what I guess now referred to as hormonal migraines. But growing up, she would swear by a McDonald's coke and fries when she would "get sick." That's one of the things I'll carry with me and still try (and yes, sometimes it works) for the rest of my life. For me, a dark room, usually cool, with blankets and pillows, a migraine abortive nasal spray & decongestants are my go-to therapies, in addition to my scheduled preventive medication.
Hemiplegic migraine patterns
Is there any regularity of pattern?
Not that I've noticed. When I had regular menstrual cycles and I was on different forms of birth control, I definitely noticed the frequency more, but the intensity and pain haven't changed for me with time or medication changes at all. Now that I've found a birth control that doesn't contain too much of one hormone or too much of another thing, I feel like they can be better controlled and am able to notice my onsets and triggers a little bit better. I feel like I'm better able to guess the frequency and intensity better, as they were worse and less controlled when on oral birth control.
Numbness and tingling
Now, if the numbing and tingling happen once, depending on the severity, I know it will happen more that week and it may be a bad week for me overall. If it happens just in one limb, I know it might not turn into a full-blown HM. If it spreads from my hand to my arm then my neck, I know I'm in for a bad day, that will usually end with it being spread to my leg and foot.
Different migraine episodes
Is every migraine episode the same?
Definitely not - sometimes I don't even get the actual head pain that would be considered a migraine. The pain and nausea and other symptoms and complications of a hemiplegic migraine attack sometimes are far worse than the head pain. The inability to walk, speak correctly and try to think when it feels like there are a million needles in your limbs, but you also can't stand on that affected half of your body is incredibly frustrating, emotional and consumes all energy you would have had.
Hemiplegic migraine triggers
Are there things that make your migraines worse or even trigger them?
Sharp cheese, lights, and stress, especially a certain type of light. Allergies and sinus infections make the most awful migraines for me. The headlights at night, especially the new LED ones, really trigger awful episodes for me, so at the age of 30, I made the decision to stop driving at night, unless there was something I had to do. I have someone else drive now, which has felt like it's taken away quite a bit of independence from me, because I really enjoy driving on an open road with the windows open and having fresh air in my face, especially in summer. I don't enjoy that as much anymore.
Excedrin migraine and hemiplegic migraine
Does Excedrin migraine help?
Actually, there have been several variations of Excedrin that have worked for me, but unfortunately, they’ve taken them off the market. (Here is the latest on that). It's really affected a lot of people, as sometimes, for some people, that's the only abortive at their disposal, due to financial reasons, rationing meds and the fact that it works well. The Excedrin that was made back in the 90's worked very well for me, but a LOT has changed since then, including the contents of the medication and rules and regulations.
Avoiding hemiplegic migraine triggers
I didn’t know there are things that you had to avoid in order to prevent migraines. What types of things do you generally avoid? Smelly things? Do foods affect them?
There are many things.
As far as smelly things go, things that will put me into a spin immediately are certain types of essential oils. I remember one day when I was still working full time, I walked by an open locker with a Frankinscene type of oil and immediately ran into the next room and threw up. The rest of the day, I was in the fetal position and had some of the worst nausea and head pain. Fake scents like air fresheners and some types of cleaning products really get to me as well. The smell of cigarettes really, really bothers me, my allergies, and asthma and it will make me nauseous and feel ill very quickly.
Allergies and sinus infections
As long as I've just mentioned allergies, that is one thing that affects my migraines very quickly, as well as sinus infections. It is one of the most uncomfortable and fatigue-inducing factors to me - the sneezing, congestion, and head pain quickly send me into an episode within even an hour some days.
Something you also never knew is that during onsets of most of my migraines, I experience hallucinatory smells & one of them is the smell of cigarette smoke. So I'm sure there is a reason I feel ill quickly when I'm around it. Even if I walk by and catch a quick smell of one, it makes my stomach churn. As far as foods, the only known foods I've kept a journal on that I know for sure affect me are types of sharp cheese and dark chocolates. The cheese one kills me.
Migraine and Crohn's disease
Does HM or other migraines correlate to you having IBD (specifically your diagnosis of Crohn's disease) or other health-related conditions?
I honestly cannot say for sure, but I know that many people with IBD and other health complications experience very serious migraines as well. If I'm not well-hydrated, that's another factor that does me in. There are many factors, including genetics, that might determine a person's chances of developing migraines, the severity of them, and the type of them.
My last question, do migraines suck or what?
I love you. :)
Tune in to Part 3 of this series where my partner and I discuss many of the symptoms I experience.
Can you tell when a migraine attack is coming?