Navigating the Hemiplegic Migraine Maze: A Personal Journey

I am one of the lucky folk that experiences chronic hemiplegic migraines. A hemiplegic migraine is a migraine with or without pain, that causes weakness or paralysis on one side of the body along with stroke-like symptoms. 

After watching Momming with Migraines, and posting my post about the misconceptions of hemiplegic migraines, I knew it was time to talk a bit about my journey. Because it's time to show some of my vulnerable sides and explain what things are like, along with hoping to raise awareness and let others know they're not alone. 

I included a very personal video by Jen, from Momming with Migraines. Please note that her journey is her own journey and not everyone is going to have the same journey. 

Let's talk a little bit more about hemiplegic migraines

The rare beast known as the hemiplegic migraine, can either be familial (passed down in families) or sporadic (without genetic origin) Not all migraines are hemiplegic in nature. Most migraine aurae don't have symptoms like weakness, difficulty speaking, confusion, seizures, and passing out, unlike hemiplegic migraines. They can however cause classic migraine symptoms such as nausea, headache vertigo, and visual symptoms. And just like regular migraines they usually happen on one side of the body, which doctors call hemiplegia.  

My First and Second Migraine

I'm pretty sure I've had hemiplegic migraines for at least over 20 years, without having an actual name to give the symptoms I was having. Like the headaches, the numbness in my face, and the confusion. But giving a name to the symptoms that followed me came much later in my life. 

While it seems a bit blurry, I do remember bits and pieces of the moment about the day that it first realized it was serious. About 10 years ago, I was on my way home from a day with my bonus daughter and my husband. I remember having a weird dull headache, then out of nowhere I became confused and had what I could best describe as a memory loss moment, kind of. While I knew who my husband and bonus daughter were at the back of my mind, I couldn't correctly verbalize and connect the two together, so while I knew who they were I said that I didn't know.  While I don't remember the numbness or weakness I'm almost certain I had it then too. 

He decided it was best that he'd drop me off at the hospital, then go drop his daughter off with her mom so that I knew what was going on. 

All my tests came back as normal as they should. There wasn't anything out of the ordinary, though I don't remember getting any kind of CT, MRI, or any brain scans at the time. So my doctor once she got the results, assumed it was either what she called a 'rare migraine', a possible seizure, or she had no clue, but gave me Lamictal to see if there were any changes. In fact, there was a ton of improvement, 

My second major hemiplegic migraine attack was a little over two years ago. I was busy writing something or watching a video online. Nothing too out of the ordinary, when I remember a headache coming out of the blue, with this headache, I remember my left side getting weak, numbness in my face, and was struggling to find the words to speak. Of course, prompting my husband to rush me to the hospital. 

At the hospital I was given a scan of my brain (I don't remember what kind) and a migraine cocktail, which is usually Benadryl, something for nausea, NSAIDS, and triptans (if one doesn't have hemiplegic migraines). It worked well, for the most part, causing me to stutter rather than just struggle with a choice of words. That was the day I was given the diagnosis of hemiplegic migraines. Which was confirmed by my more recent neurologist. 

Living With Hemiplegic Migraines

To say that it has no impact on my day-to-day life would be the exact opposite. Especially now that I'm pregnant, the choice of medications that my neurologist will allow me to take is basically nothing. Every day is a struggle, I do have a few guesses about what triggers my migraines, such as forgetting to eat a meal or panicking, but I'm not sure if I'm right. I do however know right before an aura happens and a migraine starts. Right before mine happen, I got what I describe as a glittery snowglobe effect. Imagine being in a snow globe with glitter, that's all I see. 

On the days when they do get bad, I get the order from my husband to relax as much as possible and not to be up overdoing myself. I will occasionally take Benadryl with a little bit of caffeine and take a nap when they start getting bad, which is a hit-and-miss type of thing.

Eventually, once my son is born, I do hope to find something that I can take that won't interfere with breastfeeding, and get back on something that can help. But until then, it's learning how to look for warning signs and relaxing as much as I can.  

The Social Impact

To openly talk about my hemiplegic migraines with strangers and loved ones hasn't been easy. It's not easy to admit to someone that my memory isn't too good,that I'm losing strength in my left side, that I'm having a bit of a headache and migraine-related nausea and dizziness, along with any of the other symptoms I have. It almost feels like I'm a broken record. I don't feel like it's becoming a part of who I am, and to be honest, I am not my migraines and don't like them to define me. 

Thank goodness, my mom, my husband, a few hemiplegic migraine groups on Facebook and my therapist are a great support team on days when my migraines feel suffocating. I do offer the suggestion, to have a support team to be there to remind you and support you of all of your migraine moments it truly does help and I have no clue where I'd be where I am without them.

Overcoming Obstacles

There are always going to be obstacles when it comes to chronic illnesses, no matter what part of the journey you are on. There are going to be days when your emotions are shattered, hemipelagic migraines are no different.  Personally, a lot of my emotional obstacles are knowing that my migraines are unpredictable and knowing I may not be able to talk properly for a few days. 

My tough days are part of the reason why this blog is here. I created a blog full of mindfulness activities, quotes, things to and stuff I'm learning to help myself and help others who have chronic illnesses, and people who need a bit of a push. In the next month, there will be more personal posts and posts outside of what has been posted the last month as well. But having a place for myself and others to look, at when it comes to self-care. All we need is a little positivity once in a while. 

Conclusion

Whether my journey with migraines is like someone else's journey these migraines are my own. I have my own challenges. Just because there are challenges, there's still hope for a better day, and there are other stories about people dealing with their migraines. 

For those of you who have migraines, hemipelagic or not, what's your journey like?

Clearing Up 5 Common Misconceptions About Hemiplegic Migraines

As someone who deals with a rare migraine type known as a hemiplegic migraine, one that mimics a stroke and can cause seizures. While what I have is rare and occurs in only about 0.01% of the world's population, it has become a slurry of misconceptions. With the slurry of misconceptions; people can be misdiagnosed, and have outsiders even more confused than they were before they heard of the term.

Misconception: Hemiplegic migraines are just severe headaches
Migraines in general are not just a headache, they're usually a combination of symptoms. In fact, not all migraines are painful, sometimes people can have what is called silent migraines (painless migraines), it all depends on the person.

Some of the classic symptoms are numbness or weakness on one side of your body, vertigo, nausea and vomiting, and even seizures. For a full list, I compiled some of the common hemiplegic migraine symptoms in a cute little chart, for you to save, or to better acquaint yourself with. 

Misconception: Hemiplegic migraines are not serious

If someone has hemiplegic migraines there are left untreated, or undiagnosed, it can pose many problems such as memory loss, coma and an increased chance of a stroke later in life, especially if someone with hemiplegic migraines has what is known as familial hemiplegic migraines (migraines passed through families). If you think you have hemiplegic migraines or are experiencing any of the symptoms of one for the first time, please go to your nearest ER and contact your primary care doctor. 

Misconception: Hemiplegic migraines can be cured
Sadly like most conditions, there is no cure for hemiplegic migraines, just medications to keep the symptoms and migraines away. Because one medication works for one person, doesn't mean it works for the next person. Some kinds of medications that a doctor may prescribe for hemiplegic migraines may be, anti-seizure medications, beta-blockers, and strong NSAIDs. 

Misconception: Hemiplegic migraines only affect adults
They can happen at any age. Just recently Tori Spelling was in the news talking about how her daughter who is 14 has hemiplegic migraines. 

Misconception: Hemiplegic migraines always involve paralysis.
Because migraine is a series of symptoms, they may not cause the same exact symptoms each time. Sometimes mine can just be pins and needles, others it can be weakness or it can be full-on left body paralysis. If the symptoms are new and alarming it's best to err on the side of caution and seek medical attention. 

Hemiplegic migraines are a severe condition, that can happen to anyone, regardless of age. Just because it's a rare condition doesn't mean that you or a loved one doesn't have it. Getting a correct diagnosis is crucial. If you are someone who's been recently diagnosed or are no stranger to the diagnosis, I want you to know you are not alone. You can talk to me about your migraines, share your story to add to a blog post, or I can provide you with a Facebook group or two to help you feel connected with others.