Migraines and missing work #MHAM

All ready to go to work.So is the 9 level migrainetriptan failedwhat do you do_

I am Canadian but I assume the numbers in ratio to population are similar.

I can say that days are missed in my work from migraines.

I have daily migraines so I do work with migraines. But there are also times when the migraine pain levels are unbearable, there is insane nausea and vomiting or moderate to severe vertigo or diarrhea. So there are days when I really just can’t make it in.

When I was working full time it happened more often. I was very stressed. There was more days to be there and therefore more migraines. Only three of the five work days could be treated with tripans. The sleep deprivation issue I get from working full time caused monthly status migraines. So I missed too much work. When on leaves every couple of years. Went on a long term leave as well.

This is all stressful as an employee. You know it causes problems when someone on the team isn’t there, you know that work has to be shuffled to someone else. And you feel guilty about it.

It is stressful for an employer. They don’t know how to ‘fix the problem’. But they want a employee that is dependable. They might try to figure out a best way to handle it that works with you. Or they may try threats and ultimatums. It depends on the employer.

It works for no one. No one wins.

I feel often at where I work now that they don’t take my migraines seriously. I call in. And they ask when I can get in… because it is busy and they need me. Well, I just said I have a wicked migraine without going into the details of my very frequent bathroom breaks… And I don’t know how long this migraine will last but generally the pain phase lasts 10-14 hours. So, no? But she still insists. So I med myself like crazy to get in there all drugged to the gills. Making more errors I might add, and in extreme pain, trying not to toss my cookies or otherwise rush to the bathroom for the other end too many times. And it is hell for me.

We do not want to miss work. I certainly don’t. I know in the States they have something called FMLA but we do not here. I make it to work or I am sick. There is no other options. That is why I had to change roles and go down to part time. There was not other option available to accommodate me in my other role.

Chronic migraine awareness day #MHAM

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June 29th is chronic migraine awareness day. I have had chronic migraines for about 16 years now. It is difficult to remember precisely. They have been daily for about 12 of those years. Once they became daily they just stuck that way despite all sorts of preventative treatments.

Chronic migraines are defined as more than 15 a month. More often than not.

Then there is some serious impact. Well there is when you are high episodic as well. Low episodic is actually a pretty manageable state, especially if you respond well to triptans. When I first started getting migraines they were around 6 a month, but they were manageable.  They usually responded well to triptans. Or to sleeping them off. They usually didn’t interfere with my studies, social life or work. But chronic migraines impact everything.

Continue reading “Chronic migraine awareness day #MHAM”

Under the hat ‪#‎underthehat‬ ‪#‎MHAM‬

As a part of Migraine and Headache Awareness Month, the American Headache and Migraine Association (AHMA) is participating in the European Headache Alliance’s “What’s Under the Hat?” initiative to raise public awareness of Headache Disorders. AHMA has selected today – Saturday, June 25th – to be our “Under the Hat” day.

Share your story, along with a photo of yourself wearing a hat, to Facebook or Twitter OR create a video story and post it to YouTube, including the hashtags ‪#‎underthehat‬ ‪#‎MHAM‬ and Twitter handle @AHMAOrg.
You can find helpful tips on participating here: http://www.europeanheadachealliance.org/under-the-hat/

I wasn’t at all online today and then came across this social media campaign when I got home. Had I known sooner I would have promoted it, but it caught me by surprise so here it is. I posted to twitter, instagram and facebook. And a awesome idea that it is considering my love of hats due to migraine photophobia.

This is for headache awareness.

So if you have a headache disorder and a hat… get in while there is time today. Let us blow that Hashtag up shall we. It is the 25th here anyway. 🙂

For this awareness I will state that I have daily chronic migraines with aura. At this current point medication is not working for me, but I’m going to give botox another go. Just to say I did. And because I truly enjoy a numb head. Or was it I hated that? Whatever, it will take care of any wrinkles I happen to have going on in odd areas that wrinkles don’t tend to happen anyway. Which I don’t have. I’ll suggest my migraines are also lower in the eye area. Kidding. Like I’d want the numbness there too.

I’ve had migraines officially 19 years. However when I was in my early 20’s they were episodic. Still monthly from the get-go but not chronic. They sort of just picked up steam as I went along. I am told in my case due to central sensitization. Because I certainly wasn’t on any MOH medications and limited my triptans. Just the way it was.

Chronic migraines are complex to treat. People often wonder ‘how I have them so frequently’ Well…

No one gets migraine frequently.
It isn’t rare. Not like I am some weird anomaly. They then ask ‘Why can’t anything be done?’ I say they are trying. Hell are they trying. One neuro said I simply do not respond to treatment. Flat out said, your brain sucks balls. But the fact is there are many preventatives, none of which are designed for migraines, to try. And I simply have not responded to them. If I had a Perfect response even then you are looking at a max 50% reduction in migraine frequency. Which would leave me, well, still chronic it seems. But I have never even come close to that perfection for sure. I would love 50% reduction.

It would be a long post if I went into impact. Let’s just say every aspect of my life has been impacted.

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In-between photophobia

studies have shown migraineurs can have photosensitivity between migraine attacks.

This isn’t a new study but these particular studies have fascinated me so I thought I would write about them again on this blog so that people who have not heard about them have the chance.

We all know light sensitivity is a migraine symptom. But it turns out it can be, to a degree, a symptom between attacks in some migraineurs.

 inBackground Migraine attacks manifest with hypersensitivities to light, sound, touch and odor. Some people with migraine have photosensitivity between migraine attacks, suggesting persistent alterations in the integrity of brain regions that process light. Although functional neuroimaging studies have shown visual stimulus induced “hyperactivation” of visual cortex regions in migraineurs between attacks, whether photosensitivity is associated with alterations in brain structure is unknown.

Methods Levels of photosensitivity were evaluated using the Photosensitivity Assessment Questionnaire in 48 interictal migraineurs and 48 healthy controls. Vertex-by-vertex measurements of cortical thickness were assessed in 28 people with episodic migraine who had interictal photosensitivity (mean age = 35.0 years, SD = 12.1) and 20 episodic migraine patients without symptoms of interictal photosensitivity (mean age = 36.0 years, SD = 11.4) using a general linear model design.

Results Migraineurs have greater levels of interictal photosensitivity relative to healthy controls. Relative to migraineurs without interictal photosensitivity, migraineurs with interictal photosensitivity have thicker cortex in several brain areas including the right lingual, isthmus cingulate and pericalcarine regions, and the left precentral, postcentral and supramarginal regions.

Conclusion Episodic migraineurs with interictal photosensitivity have greater cortical thickness in the right parietal-occipital and left fronto-parietal regions, suggesting that persistent light sensitivity is associated with underlying structural alterations. Sage Journals

 

What is interesting to look at in that last part of the quote is the conclusion where it goes over the structural changes the person with interictal photosensitivity in the structure of the brain. More and more studies are looking at the brain structure and migraines and seeing a migraine brain and structural changes occurring. It is fascinating research.

I’m not going to validate my experience

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Just because you cannot see my pain, doesn’t mean I have to validate its existence to you. I get I mask my pain well. I get I am stoic. But the pain is there and it is brutal to deal with.

Lately I have had this issue with work. I call in sick for a brutal 9 migraines, often with other compromising symptoms… the diarrhea or vomiting issues. I can’t function. I certainly cannot drive. So I call in. And the assistance branch manager doesn’t believe my pain is sufficient to be calling in sick. She insists I come in as ‘soon as I can’.

I get they need me. I get no one wants to be short staffed. Oh I get that. But I don’t call in on a whim here.

This is getting problematic since it is the spring weather here that is causing the issue. And then when combined with menstrual migraines… I was hit Hard. So what I have been doing is treating as aggressively as possible then trying to sleep a bit and then going in… and this is difficult because the aggressive treatment isn’t always effective. So I get there and I am in significant pain. And make significant mistakes. And get in trouble for those mistakes. I can’t function though. And forcing it isn’t something I can do. I can barely understand what the customer is even saying to me.

And I am wondering why I have to validate the pain I am in? I called in because it was severe. Not because I could handle it like every, other, freaking day. But because it was too severe.

Here is the thing about chronic pain. There will be people you will deal with that will doubt your pain. They will think it is less intense than it is. They will not comprehend pain is variable. Or they simply doubt its existence. And sometimes this makes us defensive and like we have to prove our pain. We don’t. In no way shape or form do we have to validate our pain to people like that. If it is your doctor… get a new damn doctor. Point is we can choose to educate them and they can choose to be not listen. But we do not have to validate our experience with people like that.

I don’t know what I am going to do about work because the problem is mine… the migraines have been very severe lately. And that is affecting my work. Which is a problem. It is always a problem. Always a complicated problem. I suspect I will have to talk to the pain clinic about it if I clearly have not been able to function with them myself.

 

Canada and migraine stats #MHAM #CDNmigraine

_1 in 4 people, like me, have a Mental Health problem. Many more have a problem with that._

I’m going to let you in on a little secret. There is little migraine awareness in Canada. I piggy-back on the US migraine awareness because we have none. No day, week or month. Here is our list of days Canada awareness days. And nary a day for migraines.

I try to do everything I can to advocate for migraine awareness during June because I believe it is important people are awareness this disease can profoundly affect a life. But in Canada there simply isn’t that much awareness to promote. I do it all online. There are no events, talks or large organizations to support.

In the states they talk about lack of funding for migraine research. Imagine what it is here. Imagine with the lack of people thinking about it, talking about it and being aware of it what our funding is. Nill I expect. And very little research I expect, although I have seen some crop up from here.

In fact I only found a few sites on the topic at all and none of them are promoting awareness at all.

Chronic Migraine

Canadian Headache Society

Neurological Health Charities Canada

Migraine Canada FB

Nevertheless us Canadian Migraineurs have a voice as well, that isn’t often heard in the discussion. Here are some of our Canadian stats from 2010/2011

In 2010/2011, an estimated 8.3% of Canadians (2.7 million) reported that they had been diagnosed with migraine

Females were more than twice as likely as males to report migraine (11.8% versus 4.7%), a pattern that prevailed among all age groups except children younger than 12 (Figure 1). Fewer than 1% of children had migraine, and no significant difference emerged between boys and girls. For both sexes, prevalence was highest at ages 30 to 49; the mean age for women was 43, slightly older than for men (40) (p < 0.01).

On average, migraine was diagnosed at 26.2, 3.6 years after symptoms were first experienced (p < 0.01). There was no significant difference by sex, contrary to earlier findings that onset peaks earlier for men than women

Compared with the national figure, migraine prevalence was lower in Quebec (6.8%) and higher in Manitoba (9.5%), Nova Scotia (9.1%) and Ontario (8.8%).

The majority of migraineurs reported symptoms of depression—63% were classified with minimal or mild depression, and 20% had moderate to severe depression.

About one-quarter of migraineurs experienced pain that prevented activities (26%) or felt left out of things because of their condition (26%). More than half (53%) reported that migraine had prevented them from driving, at least for a short time. Migraine limited getting a good night’s sleep for three-quarters of migrainerus (76%). Almost a third (30%) reported limitations in educational opportunities.

About one-third of migraineurs reported limitations in job opportunities (34%), although the majority were currently employed (70%). Over one-third of those currently working (36%) reported missing at least one day of work in the past three months owing to migraine. Nearly one in five (18%) who had previously been employed reported that they had changed their work activities (hours, type of work, or stopped work) for at least three months because of migraine. Previous studies indicate that migraine is strongly associated with lost productive time, most of which is linked to presenteeism (reduced productivity) rather than absenteeism Stats Canada

The educated patient

Headache and Migraine patients educated about their disorder have better outcomes. #MHAM

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I have not exactly had a great outcome since I have yet to find a preventative I respond to and didn’t even respond to botox. And my neuros basically said there was nothing more for me.

Nevertheless, educating myself was one of the best things I have done. I learned about not taking my triptans more than three times a week. I learned about MOH. I learned about triggers in more detail than my doctor bothered explaining it. I learned to track my migraines.
Continue reading “The educated patient”