Hi. I have a 5 yr old (6 in Dec.) son who I am worried about, maybe having cluster. I thought someone here might could offer some advice, maybe help me through this.
I am a Clusterhead myself. I am 32, and I have suffered since childhood. I can remember back to around age 12, but my Mom said since I was very small, I had them bad, but was always treated for the most common misdiagnosis, "sinus headache". It wasn't till about 7 yrs ago that I found my doctor now who finally diagnosed me. I am cf right now, but I feel it is cycle time creeping up, and I have some classic symptoms showing.  It seems to happen more often to me this time of year.

As for my son...He started getting bad headaches back in May, so I took him to my doctor. He was diagnosed with headaches in general, since the doc knows I suffer from migraines, monthly hormonal HA's, as well as my clusters. He said is was very common to run in the family. Well he prescribed him propranolol. Being the type of medicine it is, I gave him about a week to see if this headache thing would blow over before starting it, and pretty much it did. He would only have a HA 1-2 times a week, so I saw no need in dosing him with the med. full time since they went away. Well starting about 2-3 weeks ago, he is getting them really bad again. Only different this time. They are hitting him hard, sometimes suddenly out of the blue he will get very upset, crying with a HA, other times, they seem to be an all day ongoing thing. He is having them bad at school. It breaks my heart to see this.
Just this past Saturday, he pointed out something to me, that really caught my attention, he was having an all day episode when he said "why is my eye crying mama?"...I looked at him, sure enough, droopy watery eye, and nose was running on same side. He doesn't seem to be waking at night with any HA's, but he has a very hard time falling asleep due to a HA every night.
He is a very bright kid, but I worry about the HA's at school. I went to the school last Friday for a field trip, I walked into class and he was sitting there angry and in tears, so I asked him what was wrong, he said his head hurt.
I don't know what to do. I hate the idea of him taking that propranolol...His father passed away of a heart attack when he was 2. I know this med. affects your heart somehow.
I got him another doctors appt. in November (soon as I could get him in). I give him Tylenol w/ codeine that was prescribed to him also, but he is almost out of that. Tylenol and Motrin doesn't work for the poor lil guy. I'm just at a loss, and I'm worried sick and it breaks my heart to see him this way. He hasn't missed any school yet, but if he is hurting should I send him? Should I write his teacher a note explaining the situation, or go pick him up when he has a HA?
I feel so helpless for him.
Any advice is welcome. Just please keep us in your prayers.

Get a referral to a pediatric neurologist.

While it does happen, CH passed along to the next generation is rare. Chances are something like 1.4% greater than the general population. But see the specialist, if only to rule it out.

Brew wrote on Oct 13^th, 2009 at 5:25pm:



I agree with Brew...get a pediatric neurologist.  Chances being rare that it is hereditary doesn't mean it isn't of course.  Through the generations in my family, there are 10 of us with Clusters...8 diagnosed and the other 2 so long ago they called them Migraines, but the same symptoms as us all.  Our youngest was 3 years old...she is in cycle right now at age 19.  We are all episodic with one maybe changing to chronic.  I will ask her Mother what they did when she was young...I know they took her to a specialist at Vanderbilt Hospital in Nashville, TN.

Good Luck!
-Joni

Does he vomit at all during these attacks or have a strong need to go to sleep? Complain about the light or noise? If so, these attacks could be migraines, my 7 y/o daughter suffers from chronic migraines. I hope you are able to get a proper diagnosis and help ease your son's pain.