Who hasn’t had a headache? Right? I get a headache just typing the word it seems. But there is an actual difference between a headache and a migraine. And believe it or not, there are even different types of migraines.

This is not a post to educate you about the 100390984 types of headaches. This came about after I spent 10 minutes typing an explanation of the MIGRAINE medical condition I have. Because I spend 10 minutes typing this out, on my phone no less, all the time. Because no one has heard of Chronic Intractable Migraines before.

Chronic Intractable Migraines: It's not a headache, it's a medical condition. There is a difference between headaches and migraines.  And then there are migraine conditions that are different from the norm.  They can’t all be treated the same, they don’t all feel the same, and they don’t all affect people in the same way.

 

I wrote this post to explain how it feels to have a migraine, let alone a medical condition that causes you to have them all the time. Because that is what Chronic Intractable Migraines are all about.

I was one of the lucky people in the universe to be born to a family that suffers migraines as a hereditary condition. This means that every female and nearly every male on my mother’s side suffers from migraines. And even a few on my dad’s. Your “normal” migraine sufferer can have triggers that cause them or they can come on by stress, diet, lack of sleep, etc. Pretty much anything that can cause a regular headache and then some. My family largely suffers from scent and food triggers. Almost no one can drink red wine and or wear perfume of any kind. I am lucky enough to have these as well. I also see auras before some of my migraines. I lose my peripheral vision and see dots. Others can see lights, some get blind spots; auras can present a variety of ways.

But where my medical condition comes in is where the differences end. Because I can have a “normal” migraine. I can smell something or eat something and get a migraine. But I also have Chronic Intractable Migraines. This medical condition is characterized by someone who suffers from 3 or more migraines a month that last 10 or more days (some say three, some say 15, I put it somewhere in between based on my personal neurologists explanation).

You heard that correctly.

Prior to finding a treatment, I had not been headache free for more than a couple days at a time in more than a year. Most of my migraines lasted a couple months. My longest was 12 weeks. I was in urgent care or the ER getting Toradol injections a few times a week. I’m allergic pretty much every class of migraine medication there is and even the Toradol only made them manageable.

When I finally saw a neurologist, I was diagnosed and told that the very fact that nothing my doctor and I tried worked is basically the definition of the diagnosis. Nothing works, so your headache just never goes away.

That sounds scary. And trust me, it’s not that fun.

When it’s a migraine, it can feel like your whole body is rebelling against you. I get nausea with my migraines, so I can’t eat, I feel sick all the time, and sometimes vomit. I get light sensitive and noise sensitive. I am a ball of raw nerve endings screaming violently. I often end up lying on my bathroom floor with the lights off and the door closed and a towel shoved under the crack of the door just to try to dull the pain.

And that is days, weeks, and even months on end. Months.

But at the time, I couldn’t stop working either. So, for over a year, I worked three 14-16 hour shifts at the ER. Wanting to die. Then I’d go home and crawl in bed and not get out of it until I either had to go back to work or had to go to the ER for an injection so that I could go back to work.

For people like me, any traditional route is dead. Caffeine won’t help, neither will ibuprofen, naproxen or sleep. For your average migraine sufferer, that won’t help much either. Many, many people who get migraines have to have specific medications to get them to end. For people like me, those don’t work either.

So, what do you do?

We tried a lot of things. I had regular steroid injections done in my neck, shoulders and sometimes face. We added in daily medications, which I still take. They are basically neurologic drugs to help with pain. And the big kicker, the game changer, the one that made all the difference (insert additional clichés as desired) was Botox.

Yep, at the ripe old age of 27 I began getting Botox every three months. And it literally changed my life. I went from ER visits every week to once a month after my very first round of injections. By my third, I was going less than once a month. I was no longer in bed all the time, I was no longer sick all the time, suddenly the lights and TV and food didn’t feel like the enemy anymore.

Don’t ask me why or how it works. It has something to do with relaxing the muscles and blah, blah, blah. All I know is that when I started it was considered a new treatment and my doctor had to write in for permission for every single injection. About a year ago, it became a standard treatment and now requires no approval at all and is considered a normal office visit, so I can’t be the only one it was life changing for.

I’ve spent years telling everyone I know about the miracle that is Botox for Migraines. And looking fantastic is a nice side effect, though I admit I would never do it as a beauty treatment. My pain threshold for beauty is surprisingly low and Botox directly in the face is not the most pleasant experience. Maybe if the injections in my neck and head made me look young, I’d be more apt to try that.

But beauty aside, and painful injections all over my neck, shoulders, head and face aside, nothing else helped. And while not everyone with intractable headaches end up on Botox, and not even everyone with intractable migraines does, I can tell you that when traditional things don’t work, it’s worth a try. And while I always appreciate the kindness involved with dispensing advice and the thoughtfulness of it, I always feel badly that I usually end up just saying, “thanks for the tip,” while knowing it won’t work.

There is a difference between headaches and migraines. And then there are migraine conditions that are different from the norm. They can’t all be treated the same, they don’t all feel the same, and they don’t all affect people in the same way. Symptoms can vary from person to person, as can pain level and frequency. The jump from one to the other is massive.

I have Chronic Intractable Migraines, which means even the migraine advice that would work for a standard migraine won’t work for mine. It’s not the most common condition in the world, but it’s not as rare as you may think. And if you happen to see someone who has them on a bad day, try to be forgiving. It’s a very hard condition to deal with if it’s not under control yet.