Wednesday, February 11, 2015

Tutoring in the ER - Wife of a Cluster Headache Sufferer

Poor Gargoyle Has a Headache!

I'm typing in a darkened room in the ER where we've been for the last 6 hours while doctors are "treating" my poor husband for cluster headaches. We've been dancing our way through ER's at each military duty station for the past decade; I know them all too intimately from many nights spent curled up in an uncomfortable chair in the dark waiting until some medications bring him relief. Back when I was teaching, I'd leave to (hopefully) find time to shower and head straight to the classroom to either pull a lesson from my emergency file or attempt to wing it with history simulations. As the weeks of each cluster headache period wore on, the less creative I grew. Supporting a cluster headache sufferer is emotionally and physically draining. At one point, I resorted to showing videos for a week straight. I'm pretty sure that's not Common Core friendly...

As a new teacher with no leave time available and no lesson prep from previous classes available, I was stuck. And, with my only excuse of having a husband who had to go to the hospital for a headache (!!), I had little support sympathy either. As I think back, the lack of support during that difficult period (coupled closely with my disgust at a bully union, overcrowded classrooms and a curriculum that de-professionalized the role of a teacher to that of a glorified babysitter) only strengthened my resolve to resign from teaching. Forever. How can you support a chronic pain sufferer while working in a inflexible job? I am a firm believer that where there's a will there's a way, though...I guess there just wasn't the will anymore, and for that I am glad. Without resigning from teaching, I couldn't have devoted myself to tutoring, a position I have loved and in which I have had  the autonomy to help students thrive. I've also had the flexibility of schedule to be able to reschedule lessons during my husband's cluster periods (and my own migraines, for that matter), or when I really could not meet with students, I've still been able to support them by editing their papers and chatting with them online to make sure they understand their work.

Thank God for iPads with cellular service.

Right now, the only light in the room comes from the dim light on my iPad and the monitor showing a terrifyingly high blood pressure rate. Though I've encountered many wonderful military doctors over the years (it takes a bit of research...), little has changed in either their understanding or treatment of cluster headache sufferer, so we'll have to wait and see what kind of progress we can make tonight.

The term "headache" is misleading. The other name for a Cluster Headache is a Suicide Headache, a colloquial term that reflects the thoughts that sufferers experience at the height of each "headache." There is a reason after all for the "10" on the smiley-sad face wall poster in triage! Gallows humor, bear with me...it's been a long few weeks. Robert Shapiro, a leading professor of neurology describes the pain as,
Cluster headache is...widely regarded as the most severe pain a human can experience — that's not hyperbole. It has a population prevalence that's approximately the same as multiple sclerosis.
And yet despite its prevalence, the National Institutes of Health have only accorded less than $2 million in research for CH over the past 25 years. Meanwhile, close to $2 billion has been spent on MS research in the past decade alone.

It seems then that CH apparently needs a little help in the marketing and awareness campaign, so here's my effort.


A cluster headache is a neurological condition that affects the hypothalamus, or the portion of the brain which controls the circadian rythm. DH's are episodic clusters, which means he can get 3-4 debilitating headaches in a day for a period of a couple of months. This is the cluster. In the month or two preceding the cluster, he has shadows or pressure akin to what migraine sufferers (myself included) experience as an aura. In the month or two following his cluster, he has pressure similar to the couple of months preceding the cluster. It occupies a good portion of our year.

Cluster headaches affect less than 0.2% of the population, or approximately 1 in 1,000. From purely anecdotal research over the past decade, it appears that the rate of CH sufferers in the military are increasing, though it's possible that simply more sufferers are either getting increased to treatment or are more willing to seek help. From what I've experienced DH go through, and from all of my research, a CH suffer will do just about anything to get help--even the Big Tough Military men. While some research suggests that TBI can cause CH, the research is not conclusive; the connection between military service and CH seems to relate to the disruption of circadian rhythm patterns through emotional stress and crazy work hours.

If you're a service member or spouse who suffers from CH, one treatment option that you may have read about is breathing pure oxygen. Unfortunately, the treatment is only effective for pain management if taken right away. If you wait until you're checked into the ER, it's too late. You're in for a cockail of drugs that any junkie would love to get his hands on. Since it was too late for us, and I've had a little time on my hands...I've found a few options for you to get in home oxygen treatment through the Tricare system.

Oxygen and Tricare:
http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?num=1298898371
http://www.clusterheadaches.com/cb/cgi-bin/yabb2/YaBB.pl?action=print;num=1301004920
Fantastic help on how to talk to your doc about oxygen: https://clusterbusters.org/wp-content/uploads/2012/11/OXYGEN-12-20122.pdf

If you've any experience with CH and the military, please share. We--and the other silent sufferers and those who love them--would be grateful to hear from you.

3 comments:

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  2. As if migraines alone weren't bad enough, then you add in cluster migraines. What hell these sufferers to through.

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