migraine awareness

Let’s talk migraine impact #MHAM

Pain is always new to the sufferer. It has the same spark, color and texture. It's alive. It loses this to the observer. No longer fresh, new, interesting.

Let’s talk migraine Impact for migraine awareness month.

Some people will say it is ‘just a headache’ or ‘only a migraine’ and that is because they do not understand it is a disease and that it can become chronic, even daily and sometimes intractable (not responsive to any treatment). Even symptoms can be highly problematic.

Impact for high episisodic and chronic migraines is severe:

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As you can see we are looking at less income, changes to employment, more likely to be disabled. Increased liklihood of comorbid mental illness. Higher incidents of chronic pain and other comorbid conditons. Starting at High frequency 10 and up to chronic 15 and up.

And when it comes to impact, at my worst, daily migraines I fit into this quite well statistically. Comorbid depression and fibromyalgia. Problems sustaining full-time work that fluctuated over the time period. Asthma as well I should mention since it fits the stat. But the stats don’t describe what it Felt at that time. It felt raw and desperate. Frantic. Like I never could catch up to the pain. Never manage it enough to ever function. It was a horrific feeling. Like you are failing at everything from something you have no control over. Just waiting for the next neuro appointment and desperate for that one to do Something. Only to have them say there is nothing they can do. And that is the worst feeling of all. When they run out of ideas and you are left hopeless. Also I call this time period survival mode. Where I was just getting through the pain and crashing. Not living, just existing. And no one should live like that. I think we all deserve better pain management than that. But it is difficult. It is a complicated disease and it requires more than medication to manage.

For some of us, there is no getting better or better pain management. They are intractable. Pain 24/7 non-stop and no medication has ever helped them.

Anyway, chronic migraines can be very difficult to get a handle on. It is never just a headache.

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And for impact it is a good thing to mention when I was at my worst I would often get ‘stuck’ in a migraine. When a migraine lasts more than 72 hours it is a status migraine. This is a dangerous ER worthy event. And to point this out I once had one running for 5 or 6 days, but I couldn’t miss work… so I skipped the ER. I woke up day with numbness in my hand. Thick numbness in half my hand. Over the course of days it spread through the hand. It was in fact peripheral neuropathy, I found out much later. I am told from the status migraine. Not sure I believe that. But perhaps. They were frequent. That one was long. Either way, they are dangerous stroke wise and cardiovascular wise. People’s blood pressure can sky rocket from the pain alone.

Another worthy thing to note for impact for those of us who are daily, is that medication can only be taken twice a week. So triptans, the abortive medication, is twice a week or it could cause rebound headaches. If it works. So that leaves 5 days unaccounted for. Sometimes you have a rescue medication. That too is twice a week and that will only dull the pain somewhat for a little time. So three completely untreated days. And in general the rule would be not to use the rescue that much, you do not want to risk rebounding on it and it is more likely to cause it. So really in general 5 to 4 days untreated a week. So… you have to find ways to manage that pain. As much as we want to, we cannot treat every one, not without making things worse. The irony of it all is that the treatment can make things worse if used too often and in fact has been known to make people chronic (Migraine Overuse Headaches). Less is more. Sure doesn’t feel like it, I know.

This isn’t even mentioning the fact people can be debilitated by sysmptoms alone. Like vestibular migraines and the vertigo. Vertigo with vetibular migraines can be outside of the migraine attack… it can be constant and severe. People have been disabled from the vertigo alone.

4% of migraineurs are impacted by chronic migraines and that isn’t counting the high episodic migraineurs who have nearly the same Impact Scores. A lot of people I have dealt with thought I was a medical anomally. That it was odd I had so many migraines. There isn’t much awareness that migraines can be as complicated as they can be. As difficult to treat. The only recommended treatment for chronic migraines is Botox and topamax. Not that we don’t run through so many other medications, but those were the ones that are actually recommended for chronic migraines specifically.

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6 comments

  1. Excellent post and as a chronic migraineur, I agree with everything you say. My family doc, neuro and pharmacist continually remind me of rebound headaches, however, I become so overwhelmed by the daily pain that I just want relief and finally take meds. I am on topomax, don’t want to go the Botox route, and frankly tired of people telling me ‘this and that’ works (potions, herbs, essential oils, her sister tried this and it worked) etc.

    In our city, ER will not use narcotics to treat migraines, therefore, waiting 10-12 hours and given Toradol is compared with stamping a bandaid on my forehead to treat a 7 day migraine. Migraine is another invisible illness, that most believe is only a ‘headache’, and not understanding the horrific pain that lives with me daily.

    Thanks for posting this article. 🙂

    Like

  2. this blog post is incredibly well written and spot on! for me, chronic daily migraine has me feeling like i am drowning and paddling in water hours upon hours with the threat of drowning always nearby. when i get that desperate nothing is working and i am drowning day after day, it is pretty unbearable. it is through the internet, migraine blogs, twitter, that i am able to feel like i have a life vest; (also, as an FYI, i am printing this post and sharing with a family member as an educational tool) many thanks to you

    Like

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