coping with CM Invisible disability awareness migraine awareness

Day 15: Sharing: Chronic migraines and episodic migraines

migraine.com- ‘We are dealing with two different illnesses’- The migraine girl – A post about the distinction between episodic and chronic migraines. How they are profoundly different in treatment but often the medical community thinks episodic before chronic.

“Treatment plans for chronic migraine are so different than those created for episodic migraine. Almost all the information out there focuses on the patient who gets a migraine attack once every couple of weeks, max. Guidelines about medication use, dosage, preventive care, etc., tend to be focused on people who do not live each and every day hyper-aware that they may be hit with a migraine attack. I know that my prescription triptan drug tells me to take a pill at the first sign of a migraine attack. If I did that, you guys, I’d be popping pills five, six days a week. Rare are the days that I don’t get the beginning twinges of a migraine or the hints of aura. Luckily I am in good enough shape now that there’s not always a full-blown migraine attack coming my way even if I feel the beginnings of one. When I do get a breakthrough migraine, however, I have to decide when to take my meds—is this one going to go away on its own or not? If I take drugs today and tomorrow, I’m done for the week—what will I do if I get a migraine a third day in a row? There are so many concerns and questions for those of us who deal with chronic migraine, and our disease patterns and concomitant treatments are markedly different than what episodic migraineurs have to contend with.
Do you think you have episodic migraine, chronic migraine, or neither? If you are a chronic migraineur, have you noticed how the medical community usually focuses on episodic migraine treatment instead of dealing with chronic migraine?”

My response was rather long. I think maybe because I’m a bit brainless… I had a killer migraine earlier and treated it with a triptan. That there is enough to shut down the old brain. But the migraine is crawling back anyway.

Reply: This post stuck with me for some time because it is so true. I thought about it often and think it is like thinking when my migraines were monthly but around 6-ish they were a manageable medical condition. Like other medical conditions I have… asthma and hypothyrodism. Problematic at times, but manageable. Chronic migraines… are chronic pain and when it goes into chronic pain… all bets are off. The treatment is complex and pain treatment when chronic as we all know is oddly not nearly as effective or awesome as it is for temporary pain or infrequent pain. But also the conversations between people with episodic migraines and chronic become off… there is a leap in the experience of chronic migraines that one doesn’t get with episodic. You see these comments on social media all the time… ‘if you had a migraine you would not be on the computer.’ Or ‘you don’t understand the meaning of the word migraine if your updating your Facebook status with it’. I’m not offended by them, but I feel forced to repost those little posters and say ‘hey, this migraine sufferer works with migraines all the time… Facebook is a freaking walk in the park’ but what I do is explain your migraine isn’t mine, intensity levels vary, sometimes a partially treated migraine enables me to function and most of all when pain goes chronic so do many of the options one has to deal with that pain in the ways you might want to. So yeah ‘functioning’ at work with a migraine, at various intensities isn’t my idea of fun and games but I don’t have the choice either. I can’t call in sick Every day can I? Must save those for horrific migraine days. So if I remark on something via social media, or blog about it, with a migraine have no doubts that migraine is there. Have one now in fact… triptan didn’t really resolve it. But we have adapted to cope with pain levels in so many aspects of our lives or we wouldn’t have a life and wouldn’t be doing anything. Sometimes the only interactions I get are online because I can’t socialize in real life… where it is bright and loud and too much energy is used to deal with the pain. But… would I have done any of that in the past with a migraine… hell no. Why would I inflict that on myself? (ironically enough I could treat every migraine then… and so many now have to be untreated… there is something so wrong about that) Until it became this normal state of affairs. So chronic migraines just a different beast altogether. A cruel chronic beast that is coped with more than treated.

Well look at me right now on Tumblr with a migraine – is an example of one of the pictures I found and my response. I might have been a tad irritable that day.

There is such a massive stigma associated with chronic migraines. It is insane. In the workplace it can be brutal. And chronic migraines have had a horrific impact on me so I never hesitate to raise awareness to how disabling they can be. How much of an impact they can have. How complicated the treatment in fact is. This pain… is mind-boggling. Sometimes I believe I can cope and sometimes I am barely surviving it. I can get around other types of pain… I can’t escape these. For FM I can not do certain types of work, I can move certain ways… I can’t chop off my head. I hate that I have to pick and choose which ones to treat and which ones to suffer through… and frankly we are looking at three days of potentially treated migraines (not always effective, triptans don’t often work all day or at all and I can’t take more than one) and four days of nothing or maybe a painkiller (a T3 to slightly dull the pain for a few hours when it peaks… just one though). Yet the expectation that we should be able to cope, without being able to treat every migraine or even effectively treat the ones we can treat, and work a full time job and deal with the stigma from our employer and the stress over the fact that employer will not like the fact you miss so much work is utterly insane. But to become disabled from migraines? What? Aren’t they just headaches? Nasty, nasty stigma.

-Reaearch confirms migraine patients deal with extreme stigma

“There are a few important takeaways from this significant research:

  • The stigma we believe we deal with is very real. This is true both of our internalized stigma and stigma imposed by others upon us.
  • Stigma significantly impacts our social relationships and employment and career opportunities.
  • Stigma helps explain the vastly inadequate level of research funding for a disease with the kind of broad, devastating impact of migraine. It’s simply not perceived as serious or life changing, thus policy makers see little need to allocate more money toward research and those conducting research may be less inclined to place any value on studying it.
  • We should take similar steps to those taken by the epilepsy community to reduce stigma on a number of fronts: public education, advocacy and legal efforts; training programs for doctors and their staff; and on the individual patient level through programs that provide counseling, support and empowerment”

https://w.atcontent.com/-/1o0rCCeAkRB/nikki.albert/6K6LLOGBurZ.text/Panel/Autocheck

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