I have been a migraine and CH sufferer for 23 years but was only diagnosed with CH 5 years ago.

My son just turned 12 and I was shocked yesterday when his doctor suggested he may be having CH. He has been complaining of headaches for years. I have never found any clear triggers or patterns although he does get allergies. A few months ago, he had a terrible headache for more 2 weeks and an MRI revealed sinus infection although he had absolutely NO outward symptoms - just pain and low energy.

I brought him in yesterday since he had been complaining of headache for 4 days. On the first day, he had severe nausea but that went away and the headache remained. He has had sensitivity to light and sound. Pain is behind the eye and in the temple. Both constant, dull pain and throbbing. He describes the pain as constant but spiking several times throughout the day. He is able to sleep at night but wakes with headache every morning.  Plus, he looks just awful. Red, puffy eyes, low energy, and cranky.

When he described all this to me, it sounded a whole lot like migraine. I almost fell over when doc said she suspects clusters (with an atypical pattern) because it seemed so unlikely since I have never seen any clear indicators that CH is hereditary. Thoughts?

The following is from one of the biggest surveys conducted on CH sufferers:


The survey was placed on a Web site from October through December 2008.
Results.—A total of 1134 individuals completed the survey (816 male, 318 female).

Family History of Cluster Headache.—Of the surveyed
patients, 82% denied a family history of cluster
headache. Of those with a positive family history, a
first-degree relative was noted in 17%, with fathers
being the most commonly cited relative in 6%, while
mothers were noted to have cluster headache in 3%.

Some of the problems with getting to the root facts, it wasn't that long ago a woman with a headache had a "Migrain" period. So many women who suffered from CH always thought they had weird migrains. Their children never knew they actually suffered from cluster headaches. From the stuff I've read and our own experience on this board, there is a slightly higher incidence of CH among the children of CH sufferers, then you see the rest of the population.

Joe

I can't remember her name but there is a lady who posts on here, and both she and her dad are sufferers. So yes. But I hope it's not the case for your son - I wouldn't wish it on any one, let alone a child.
Maz.

As a ch sufferer it sounds like your son has the same..

Sorry to read of your family situation.  I can relate as my CH's started around at age 11 or 12.

My best friend RTD, who some of you met at the CB convention 2 yrs ago in Las Vegas, had a genetic commonality with his father who also suffered from CH's.

Hopefully your son does not also have them, but if he does; you could certainly be a fantastic supporter to him ;)

Take care!
-Gregg in Las Vegas

He sounds like me.  My mom and her brother both have CH, as did their father (my grandfather). 

When I was 11, I started getting these horrible pains behind my left eye.  They were happening in February and March, so my parents chalked it up to allergies, though I was screened for brain tumors, eye problems, and everything else.  I was tired, I hurt, and the pain was terrible.  As a child, the nausea and sensitivity to stimulus was so much worse than it is now (I think because my body just had no idea what was happening). 

From about 13-17, we were totally uninsured, so no meds, tests, or anything else.  For those years, I missed a lot of school, and spent a lot of time locked in a dark room with a coat hanger wrapped around my head, rocking in a chair.  It was hell.  At 17, it almost drove me to do the unthinkable.  The only thing that saved me was going to college, having student health insurance, and being given Zomig for "migraines."  While not the best method, at least it was something.

I hope your son is not a CH sufferer, but, if he is, PLEASE make sure that he gets all the treatments and tests necessary (which I'm sure you will).  I hope no child will ever have to suffer needlessly, especially in this age of medical knowledge. As he is so young, maybe there will be amazing breakthroughs in his time.

FYI, my dad has had cluster headaches for 10 years.

I've had them for 6 years.

Our cycles are pretty much sync'ed up. 11 months remission, 1 month of hell.

My families CH history: To the best of our knowledge my father and mother did not suffer from CH. 

Going forward, my youngest daughter has CH.  My sister has CH.  My sister's son has CH.  All independently diagnosed by physicians.  Of course, I have CH also.

Moose,

It has been mentioned but I don’t recall ever reading any decisive conclusions on the subject.

Here’s a paper I came across. Apologies if you’ve read it before.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Keep well,

Peter.

Your description of your son's headaches doesn't actually sund like CH to me. For instance, you mention "puffy eyes," not "puffy eye." I know a lot of CH sufferers get mistakenly diagnosed with sinus infection, but going by what you describe, it sounds either like migraine or perhaps something along the lines of sinus infection. Just keep doing your detective work.