Hemiplegic Migraine Q&A With My Partner - Part 1
I know a lot of our community struggles with finding ways to tell their loved ones how they can be supported, better understood, and finding new ways to help educate others on what it's like to experience life with migraine. In this series, my partner and I discuss my type of migraine - hemiplegic migraine, and what it's like to live a day in my shoes.
Severity of symptoms
What are your symptoms, besides the debilitating migraines that I know you struggle with?
I’ve had migraines since probably high school, definitely college, but my big diagnosis that brought a lot of unexplained symptoms into my life came about 6-7 years ago. As you know, I experience hemiplegic migraines, which can be a scary experience for those who experience it themselves, but also people that notice there is something slightly to very obvious going on with someone. It can be scary because HM can mimic strokes, which can be terribly frustrating for me. But I also know that there are plenty of people with migraine/HM’s that have actually experienced a stroke while living with migraine/HM. We tend to minimize the seriousness of our symptoms because we experience so many different ones and I don't like to live in fear.
Pain and paralysis symptoms
What about the things I don’t know you struggle with?
I’ll answer that later after a certain question you asked me previously. A lot of is sensory-based and nerve-based pain. Imagine being attached to a tens unit, on full blast, while someone pokes you with cactus pricks on your hands, arms, feet, and legs as you try to avoid moving, as it makes it worse - but staying still is just as miserable. I don’t like to compare conditions and severity of symptoms, but it’s similar to a very bad type of neuropathy (that I also have), but multiply that by 1000 and that’s what it feels like to experience the temporary plegia/paralysis and pain part of HM.
Signs of a hemiplegic migraine
Is there any sign that you're going to have a migraine coming on and when you get that sign, is there anything you can do to combat it or lessen its effect?
Usually, for me, it’s the hemiplegia, the pain associated with it, complete brain fog, and diminished mental capacity. You’ve obviously seen me really struggle with aphasia and even stutter when one is or might be coming on. I tend to get very emotional and don’t know why until the actual head pain starts. I get eye pain, sometimes in one eye, sometimes in both and it feels like my brain is in a pressure cooker. I experience a lot of deep temple pain that usually appears at the same time and length of when the sides of my skull start to really hurt.
Medications to lessen the pain
As far as medications, abortive nasal spray has been the only thing that has helped me in addition to nerve blocks and oral medication. Nerve blocks have been an absolute blessing for my migraines. I’ve had the conversations with you about insurance and the lack of coverage, despite the medications that may clearly help patients are being rationed to 5-10 pills monthly. I could, as well as SO many others, use that amount within 3-5 days. This makes life with migraine extremely tough and forces you to weigh heavy decisions - HOW bad does my migraine have to be before I give in and use one of the 5 pills that is supposed to last me 31 days!? There is a lot of anxiety and hesitation in patients because of this.
A hemiplegic migraine episode
What is a migraine episode for you? How long do they last and how often do you get that?
Hours to days - lack of concentration, loss/lack of ability to form sentences that make sense, paralysis in some of my limbs. It's been a few months, but when they come on full-blast, as I say, I experience left-sided paralysis from seconds to minutes, to parts of my day. I'll then usually have a raging migraine for a day and into the night and next day. Sleep is hard for me when I have a migraine, because of the pain, the dizziness, the numbing/zapping, and terrible nausea that comes along with it.
Supporting someone with hemiplegic migraine
How can we best support you?
Having a medication kit at both our houses helps. Grabbing my med kit with my abortive medications, going to McDonald's and grabbing fries, coke, and maybe a chocolate shake, because I get very dehydrated. At this point, we discussed how hard it is to keep your abortive medications in stock due to insurance regulations on how many pills, nasal sprays, and abortive injections. It’s frustrating, it’s costly and rationing pills for a “worse episode” is something no patient with this type of chronic condition should have to choose, “How bad is bad?” As far as support, I think you are an incredible caregiver and I could not ask for a more understanding person to deal with my complex medical issues, aside from living with HM.
Helping someone with hemiplegic migraine
Is there anything I can do to help when you’re having symptoms and complications from it?
Make sure I have a cool, dark room to get into and offer me anything with caffeine, but you know my go-to is coke for nausea. I think you're an incredible caregiver and rarely do I lay down because of them because of nausea, but when I do, having you there to scratch my head and back helps a lot, if I'm not puking.
Glasses and hemiplegic migraine
I know you wear glasses, on and off, quite often. Do the glasses help you see or do they help you deal with the effects of the migraines?
Like we talked about above, usually wear reading glasses, and when blue-light blockers went on the market, it was an absolute no-brainer to purchase every new pair of glasses with the intention they will include the blue-light blocking “hardware” if you will. Because I had an adverse reaction to Botox many years ago as part of my migraine therapy, I’ve had to wear reading glasses (nearly all strengths) since then. You see me put on my glasses and take them off in frustration sometimes because some days, my vision changes so much, glasses might make things worse. (I’d also like to note that due to Crohn’s disease, my vision changes frequently, which doesn’t help my migraines).
Tune in to Part 2 and Part 3 where my partner and I finish talking about HM, how it's affected our relationship, and how we can learn to better communicate when one of us notices a symptom the other might not!
Have you checked out the new Community Hub yet?