Doc's Cluster Headache Journal

Wednesday, January 19, 2011

Sleep, How Can It Be Wrong?

Tonight I decided I needed rest I had been nursing a headache (not a cluster) that I had awoke to the day before and decided that my wacky theories about sleep being a trigger for pain in my head MUST be false. (I go back and forth on thinking I am crazy about this point)

So I retired early, leaving my wife to deal with our extremely rambunctious 2 year old. (I had been dealing with him all day so I guess I shouldn't feel too guilty). I stayed in bed to see when I would crash, and for once I would be dressed for it and in the proper place for sleeping. At around 10pm I realized I was "sputtering" in and out of sleep like a short circuiting toy. I was jerking around and fighting it like I usually do (involuntary response akin to mild night terrors, possibly like the hypnic jerk (Myoclonic spasm?) movements infants make). Normally I try to occupy my mind during these periods because to be honest it is unpleasant and feels a bit like I imagine having a bad head injury would feel like. This is why I don't make it to bed so often and fall asleep wherever I happen to be when the "switch" finally gets thrown.

This is interesting...
"Myoclonic spasms and Epilepsy:
Spasms which are accompanied by a loss of consciousness indicate epilepsy, and should be explored further with an epilepsy clinic or specialist."

I am not implying that I think I have some form of epilepsy, just that there is clearly something weird going on in my noggin that no one has yet figured out fully. Topamax IS an anti seizure medication after all. But I digress...

The last time I saw the clock it was close to eleven and I finally passed out for good. At around 3:30am I came awake with a lot of pain. It was the same headache but it was intensified greatly and I could not sleep through it. I can no longer ignore it, I have to firmly assert that the longer I sleep, especially off schedule, (2-7am the more likely I an to get headaches of all varieties.

I hate these "other" headaches almost as much as clusters because they are annoying in a whole different way and require different tactics. Ignoring mild clusters is a skill I have mastered, it seems unfair to force me to learn a whole different method of pretending to be "normal" around other people.

Honestly I think I am failing and people are starting to tire of me.

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3 Comments:

  • Cluster headaches are very painful and the they live for about an hour of excruciating pain.There is medication that cures the ache completely.

    By Anonymous sinus surgery Los Angeles, at 2/02/2011 12:00 AM  

  • I stumbled upon your blog when looking up about other people's experiences with Topamax, because I just started taking it for migraines and I wanted to see if others have some of the same weird symptoms I've been having...but that's not why I'm commenting.

    I've read some of your more recent entries, but not all of them, and I wanted to see if you had considered a few things. I apologize in advance, this is probably going to be very long.

    What kind of a diet are you on? If you have any food allergies or sensitivities that you're unaware of, they could be contributing to your headaches. I recently learned that I'm lactose intolerant, and so eating dairy without taking a supplement to break down the lactose caused me to have more migraines. There are also a lot of people who believe that switching to a vegetarian (or vegan) diet will help with a multitude of health problems. Have you looked into that? I tried being vegan once, but it wasn't for me, but I've been vegetarian for many years, and it's not too bad. There's countless dietary things to consider if you haven't gone that route, so you might be best off going to an allergist and having them guide you through a food elimination diet.

    I also think you might be seeing too much of your neurologist. You're seeing neurologists who are just medicating away your symptoms without doing much to find out what's causing them, when your biggest problem (in my opinion) is your undiagnosed sleep disorder. If you can't sleep at least 5-6 hours every 24 hours and feel better upon waking, you need to find yourself a good somnologist.

    Now, my final thing: have you heard of the tv show Mystery Diagnosis? It's on the Discovery Health channel. They tell the stories of people who have all sorts of diseases, conditions, etc. and the long, agonizing journey it took to receive their diagnosis. Maybe someone on that show has been diagnosed with something that will help you? It's worth a shot, and at the very least, maybe seeing their stories will help you stay hopeful.

    I hope my long ramblings can somehow help you out, if only just the slightest bit.

    By Blogger jennibear, at 3/29/2011 6:10 AM  

  • I found your blog & I find your posts & user comments useful & helpful enough to link your blog from my new blog. I am an Episodic Cluster Headache Sufferer. I've gone through several of the typical medication options along with oxygen, which really has been quite frustrating, but a saving grace all at the same time. I am just wondering if you or any of your followers have had any luck with any alternative options? Personally, I find them quacky, but at this point I'm willing to investigate anything. I'm referring to acupuncture, chiropractics, psycho-stress therapy, naturepath, or other? I've found a small handful of cases online that say things like this worked specifically for their Cluster Headaches, but I question whether they were just lucky that their cycles coincidentally ended or whether they really had the proper diagnosis in the first place. My blog is www.clusterheadachepain.blogspot.com

    By Blogger Matt Duke, at 4/10/2011 10:59 PM  

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