My sister-in-law recently got diagnosed with migraine with aura. And that sucks a whole lot. I despise migraine disease and it literally doesn’t matter how frequent they are, they suck. They suck a whole lot. Worse is that they are not infrequent starting for her. Not like once a month or two here. Way more worrisome than that. It is concerning.

It got me thinking about when I was diagnosed back in the day. About how very little I knew about them and learned over time, the hard way, as I progressed into chronic migraine. But also how I felt early on. For example, I remember that I thought triptans were the best damn invention Ever. Like magic pills. Poof migraine gone! When they worked, of course. But I do remember being pretty amazed a pill could work on that level of pain so effectively. Most of the time.

Things I learned after being diagnosed with migraine disease

Anyway, here are a few things I definitely learned:

Triptans don’t always work

I love them, don’t get me wrong. But they do not always abort a migraine. And sometimes the migraine comes back even when it feels like it is aborted. So if you have taken the max amount, you are left with riding it out. Riding out a migraine means 4 hours to 3 days of migraine fun! Yay. So when they fail that can really, really suck. But when they work that, obviously, is awesome.

Obviously, for chronic migraine they do have limitations. We can’t take more than 2 a week for example. Some of us get 7 migraine attacks a week. So…. not cool.

And they are much more effective when you take them right away. Less so if you wait. And the more migraine attacks you have the more inclined you are to wait a little bit to see ‘how bad it is’ so you can ‘save’ the triptans for the mindblowingly severe migraine attacks. And this never works out well.

I should note we now have other options to the triptan now, which is awesome for many people who cannot take them. (info on Ubrelvy)

Prevention

My migraine attacks started at a pretty good pace actually. And I wasn’t aware, nor was I informed for some very important things:

  1. That when migraine attacks become too frequent and disruptive that migraine preventative treatment is added to migraine abortive treatment.
  2. To pay attention or track how frequent my migraine attacks actually Were.
  3. And that the very important fact that it is recommended that preventative treatment should be started at around 4 migraines a MONTH. Migraine.com

So I didn’t start a preventative, if I recall until I was very close to chronic. Up there in the High Episodic range of at least 10-14 per month, if not more some months. And I have a poor response to them so it really didn’t take me long, upon entering the workforce, to bump that into chronic, and then daily. I have fibromyalgia and working as well, let’s just say impacted my sleep cycle and pain, which them impacted the migraine frequency every year. I personally think if I had been on preventative treatment right away that may not have happened. Maybe I am wrong. Who knows. All I know is that this is a very important thing I now know.

A migraine attack is more than the Headache Stage

I always thought I would get an aura (visual back then) and then Bam Mind-blowing headache, with all its associated symptoms of the nausea, photophobia, sound sensitivity and so on. Never really thought about how I felt Prior to the aura or After the headache stopped.

Prodrome
Aura
Headache
Prodrome

And when you do know about the stages of a migraine attack you know things like not every migraine attack includes all four stages every time. So even though I have migraine with aura, not ever migraine attack necessarily has an aura. The more you are aware of the prodrome or aura stage symptoms you have the more aware you are of when to take a triptan as well, or any other management strategy you have.

Lifestyle makes an impact

Back in the day… WAY BACK IN THE DAY, there were not a lot of migraine online sites or communities or resources. Or much of an internet actually. So if your doctor said nothing, and he said nothing, you didn’t know some things were impacting your migraine frequency. Caffeine intake or my pervasive insomnia. Or lack of hydration. Or my hormonal cycle (well, I knew I have viscous headaches at that time… I just didn’t know they were migraine attacks because they had no aura which was so common to me). I didn’t know much about triggers or avoiding them. Or things I could do that could help them. Or things I was doing that might be making them worse. Nada.

These were the main things I learned after being diagnosed that would have helped being episodic in the beginning. Basically, the number one thing I learned was to educate myself on them. Being an educated patient certainly benefited me when I became chronic and treatment more complex.

See more migraine related posts

Migraine: Beginner’s guide to posts
Let’s talk migraine with aura
Let’s talk vestibular migraine

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6 thoughts on “Things I learned after being diagnosed with migraine disease

  1. Hi Nikki
    I also have chronic migraine among other things. It appeared after my fibromyalgia got worse. Not just that but also facial and teeth pain. Sibelium was a savior for me too. It helps a lot and then lamotrigine was added for facial pain. I take these two every day but I still get migraines depending on how bad my fibromyalgia pain is. They are definitely connected. But now we’re talking about other ways of managing migraine such as botox and CGRP. What’s your opionin on them? Have you tried any?

    Like

    1. Botox and CGRP medications are great options if you have chronic migraine attacks. Botox didn’t work for me but I know many people who respond well to it. I tried Aimovig for a CGRP so far but had some adverse reactions that were very rare… most people do not have those side effects thankfully. I am going to talk to my neurologist about another one to try out when I can in the new year. Because they do have some great results for chronic migraine for sure.

      Liked by 1 person

  2. Great post. As a migraine sufferer you certainly understand why I only react to it today. I might translate it into German and send it to some friends who also suffer or who (like me) have relatives who constantly tell them about new “wonder drugs” and ask why we don’t take them.

    Have a good day and a migraine free Christmas.

    Liked by 2 people

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