How to Love Someone with Hemiplegic Migraines
Hemiplegic migraines are a rare and serious form of migraine that affects an extremely small percentage of migraine sufferers. Hemiplegic migraines have a range of symptoms that expand from blind spots or visual auras to complete paralysis. A person who suffers can often have difficulty speaking seeing, and even moving.
How do I know about this?
I have an invisible illness. I have hemiplegic migraines.
I often hear “But you look so healthy?” or “You don’t seem sick.” And the fact is, it is entirely true. There is no outward sign that I have this condition and no, I don’t look sick.
But at any moment that can change.
I can go from happy and carefree to debilitated in a matter of minutes. Typically my migraines start with some form of visual aura, usually blindness in one eye or flashing lights and zigzags. After that occurs it is usually within minutes that I start to lose feeling in a limb or limbs, often it starts in my hand. The numbness spreads up or down one side of my body until half of me is paralyzed. From there it becomes difficult for me to speak and my stutter becomes difficult to comprehend while my brain takes a vacation and even simple words can become confusing or I forget words. After those side effects subside I typically begin between seven and ten hours of vomiting while my head explodes in agony.
Hemiplegic migraines can be described as the feeling of being doused in gasoline, lit on fire, and then driven over by a truck. And from experience, I would say this is probably pretty accurate.
The pain is excruciating. I am a word person, as you can tell if you read my work, but I honestly cannot fully describe to you the extent of the pain.
These effects can last anywhere from a few hours to a few weeks and often take weeks or months to fully feel normal again.
If you’re lucky like me, you only experience this one to three times yearly. However, the majority of sufferers experience these attacks anywhere from once a month, to multiple times a day.
Treatment is still extremely limited as the majority of doctors still aren’t entirely certain what to do with us. Many common migraine medications are actually dangerous for us to take and though we are often prescribed medications for epilepsy, many people experience no improvement.
So what can we do?
Well, most of us are constantly searching for answers and trying things and maybe, one day, there will be a full treatment or cure. But for now, we research tirelessly and work to raise awareness about the condition.
So what about those that love us?
And this isn’t just our spouses or partners, but also includes all of those in romantic, platonic, or even professional relationships with us.
What can they do to help?
There are actually plenty of things that can assist us but I’ve compiled a few need to know facts to help assist you in assisting us.
1. No. It’s Not Just a Headache.
People often try to explain things they don’t understand or have never experienced. The majority of the time when an attack comes on, we can’t just “take something.” You may be able to pop an Advil when your headache comes up, but we can’t. There are some relatively fast acting rescue drugs that can be used, but most only slightly lesson the symptoms instead of completely stopping the attack. These “migraine cocktails,” as they are often referred to as, usually require being admitted to the hospital. With the high cost of the drugs and issues with things like insurance funding, many suffers literally cannot afford to attempt to stop the attack. Along with this most of us have already spent so much time in hospital, only to be told there is nothing more than can be done, we would prefer to just avoid it and instead suffer through the agony until we are pretty sure death may be near. This is not dull pain or just an irritant, it is completely debilitating and leaves us weak and incredibly ill. Ever wished someone would just shoot you in the head or set you on fire because the pain would be so much less than what you are experiencing? Because we do.
2. Our Senses Ultra Heightened.
Things like lights, sounds, and even touch can only add to our pain, and though you may want to try and console us with a gentle pat on the back or holding our hands, sometimes that can bring us to our knees. Understand that sometimes we cannot be touched, so just ask us before you try to physically comfort us. Like other migraines lights and sounds can also be an instant way to increase our pain, so make sure we are in a dim room, or even pitched black room. And keep it quiet too, often we feel like vengefully murdering that seemingly innocent fly on the wall because, well, it’s just making too much damn noise. Smells can also be intense for us so while we are in an attack or even easing out of it, just be aware that your fried egg sandwich with ketchup and extra onions may look and smell amazing to you, but it could actually send us crawling to the bathroom, or at least the nearest puke bag.
3. Give Us Time to Speak
Forming words and even talking can be really difficult especially during an attack. It is incredibly frustrating to go from a perfectly civilized adult to only being able to grunt or groan like an undeveloped neanderthal. For me, my stutter increases exponentially and often takes me a few minutes to get out a sentence that would normally take a few seconds. We may only use small words like “water.” Or “bright.” So as we attempt to talk to you please listen and listen patiently. I promise you we are trying.
4. We Have to Rest.
After an attack rest is crucial for us to get better. Sometimes we can actually be up and around the next day, but it’s usually pretty slow and brain fog is a real thing. Others with the condition may even take weeks to leave the “Post Drone” stage of a migraine. Then depending on the severity, it can take even longer for us to get back to fully normal. Many of us may suffer some minor damage and our vision may get worse or our muscle strength may not be as great, but the longer we go without a hemiplegic the more likely we are to make a full recovery.
5. We Have Rules For a Reason.
Those of us that suffer from hemiplegic migraines do our absolute best to keep them at bay. Sometimes this can be a really tightly scheduled time frame for medication or even sleep. Other times it can be a specific diet. Others have to avoid places that could be too bright or even too smelly because it could be a potential trigger. Triggers can range from the internal, like hormones and infections, all the way to external things like flashing lights, high pitched noises, or even sex. Each and every individual is entirely different from their own triggers. We all look very carefully at potential triggers and try to avoid them like the plague. So when we say no to the MSG filled food, or list our food allergies to the server, or when we state we have to take a medication at a specific time, please respect that. Understand that we don’t say no to things because we want to be difficult or be a pain, it’s just because we are terrified of the thought of being IN PAIN. Trust me, we would do anything to change it if we could.
6. We Get Anxious.
The majority of sufferers also experience intense anxiety. This can be due to a biological function within our bodies or simply a psychological issue. We often live our lives with a dark shroud of fear hanging over our heads. It almost always revolves around “am I going to have one?” and “how bad will this be?” And because many of us are at a higher stroke risk due to our condition it leaves a lot of us wondering if we are just having a migraine or if it’s a full-on stroke. Sometimes our thoughts will even drift to “is this the one that kills me?” These fears are normal and really common. For me, I may start to feel strange and then ask my husband about fifteen times “do you think I’m going into one?” just for him to say “I think you’re ok.” Even the slightest sign of a symptom can send us into a major panic. So understand that we aren't trying to be neurotic or annoying, we are just genuinely scared.
7. DON’T PANIC.
The worst thing you can possibly do for someone in an attack is to freak out and panic. We already are worried through an attack as it raises our stress hormones and often our anxiety. So please, even if it’s scary, try to remain calm. Know the signs of an oncoming attack and remember that we do need you. As much as we hate to admit it, hemiplegics take away our sense of independence, and we do need someone to care. Even if that just involves an employer understanding that we can’t “work through it.” Or a friend or loved one to be willing to help us get into comfortable clothes or help us to bed. We just need people to be aware of our condition and understand that we would do anything to take it away. And never forget, we do appreciate you, I promise.
These are my top seven tips on how to care for caring for someone who deals with hemiplegic migraines. Yes, many of these tips can be used for many migraine sufferers, but for my purposes, I chose to focus the overall theme of my piece on something that I live with. Please keep in mind that everyone with the condition can react differently, have different triggers and their severity can differ as well.
Each person should be treated as an individual case and should be treated with compassion and understanding. By opening doorways to the conversation we can all work towards raising awareness and furthering research of treatments.
If we all work together, both those that suffer from the condition, and those that love us, and help show that the world that no, it’s not just a headache.
