Please post you message below, in the Supporter's section where there is a section for children.

I hope that you are working with a pediatric neurologist and that you have a relationship with a headache specialist.

My first reaction was hoping you can get his CH under control to prevent the development of secondary emotional issues which, because of is age, he may be vulnerable to developing.
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A search of the largest medical library in the U.S. yielded this abstract. You may wish to print for your doctors.
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Eur J Paediatr Neurol. 2009 Nov;13(6):524-9. Epub 2008 Dec 23.

Cluster headache in children--experience from a specialist headache clinic.
Majumdar A, Ahmed MA, Benton S.

Department of Paediatrics Neurology, Bristol Royal Hospital for Children, Level 6 UBHT Education Centre, Upper Maudlin Street, Bristol BS2 8AE, UK. anirban.majumdar@nbt.nhs.uk

Abstract
BACKGROUND: Cluster headache is a primary headache disorder with the distinct clinical features: unilaterality, extreme pain, cranial autonomic features and periodicity. The prevalence of the disorder is 0.1% in adults and with a male predominance. The age of onset is usually in the second and third decade of life but the onset in the first decade is recognised. We describe our experience of cluster headache in children and review the literature. We have attempted to define the clinical features of cluster headache in children as compared to adults, the role of clinical investigations, reliability of clinical diagnosis, effective treatment and management options. METHODS: A retrospective casenotes review was conducted on all children with suspected cluster headache seen in our centre from 2000 to 2005. Case ascertainment was conducted using International Headache Society guidelines, and by telephone interviews with the parents. RESULTS: Eleven children were identified, (seven male and four female). The median age of onset was 8.5 years (range 2-14). The median age at diagnosis was 11.5 years (range 7-17). Eight children had episodic and 3 children had chronic cluster headaches. The average attack duration was 72 min. The commonest reported bout frequency was one per day. Several children had circadian and circumannual periodicity and most displayed the other features of the disorder, such as agitated movement and cranial autonomic activation. Oxygen, methysergide, verapamil, zolmitriptan and dihydroergotamine were the drugs which were effective in terminating the headache. Paracetamol, ibuprofen and paracetamol/codeine combinations were not. CONCLUSION: We describe our experience with cluster headache in eleven children who all presented before the age of 16.

PMID: 19109043 [PubMed - indexed for MEDLINE]

DebbieKos wrote on Jul 15^th, 2010 at 9:16am:

Hello DebbieKos, glad to meet you and I am soooo Sorry it is under these circumstances.  I know what it is like to watch your child go through this kind of pain as my own son went through something quite similar and was diagnosed at 2 years old, he's now 21.

Read everything posted above and make sure to get in touch with a GOOD Pediatric Neurologist.  Ask the Neurologist about Oxygen use for your child, and Imitrex to help abort the attacks when they come. 

I'll share with you an old military recipe that is safe for a child (but go easier on the Tang, you'll understand that in a minute) that my Dad shared with me when my son was diagnosed.  Discuss with your son on his terms/understanding about when he feels an attack coming on so he knows and you know what he is feeling.  When he feels an attack coming on or you know that the air pressure is going to Drop or rise  quickly Get him to down a Glass of Gatorade and a Half a glass of Tang (tang is very acidic so be careful about using it more than the Gatorade).  This is an old military trick used to help kill or avoid a migraine/pressure headache hit.  If nothing else regular intake of Gatorade did help diminish the number of attacks my son had and hopefully it will help your son too. 

Hot or cold depending on your sons preference (this will be trial and error, just keep the lines of communication open) moist/wet clothes to the back of the head or where ever he wishes you to put it.  Note for Pressure related headaches hot usually works better and place the cloth at the base of the back of his skull, you may have to keep reheating the cloth.  Make sure you ask him if it's too hot or if he needs it hotter.

Last but not least pay attention to your childs diet to see if he has any food related triggers such as; any chips with MSG (Mono sodium glutamate) this is also in some processed meats, peanut butter and chocolate combinations, and soy products.  I used to have a list somewhere, I'll see if I can find it for you, but your pediatric neurologist should have one in a pamphlet for you to read.

Note: CH and Pressure related headaches are different and need to be treated differently.  My father, my Son and I get Pressure headaches, CH and for my son Migraine related headaches, you can tell by the feel of the headache that they are WAY different.  Another reason to continuously talk with your son about what he is feeling so you know better how to help him through it.  It will be difficult at first and frustrating for you both while you and he figure out how to communicate the different types of pain he'll be feeling and he learns to differentiate the two types. Just be as loving and as patient as you can be.

I hope this helps, I know how horrible it is to watch your little one being tortured this way.  {{{Hugs}}}

Best wishes and keep us up to date.

Hi Ginger, thanks so much for that advice, I'm off to buy gatorade and tang... there is a typhoon nearing HK and it was quite rainy and windy today, area of low pressure, and sure enough this afternoon after his nap he had the headache. We gave him ibuprofen, but 2 hours later, back it was, so panadol... he seems to be fine now. If it returns the doc has given us a third line, Voltaren. But I will try the hot packs. His pain is in his forehead, but he also says its over his right eye sometimes. For kids I hear the unilateral pain does not quite kick in until later.

Oh dear, your son had them since 2? Oh no. But he is now 21, did his CHs get less through the years? Did they stabilise, how are they now? This is what I am really curious about. I know some men with migraines who were diagnosed when they were kids, and they got much much less in their teens. Is it the same for CHs?

He has food allergies, so no seafood, eggwhite etc, and we don't give him chocolates, ripe bananas, absolutely no refined food or processed food, all fresh home-cooked and loads of veggies, lots of water etc. No sugar, baked stuff etc etc etc.

Bob, before we had it under control, he would scream with pain and vomit. Now because he's on the preventative meds he does not scream as much, but goes very quiet and non-communicative, does not eat or drink, and cannot sleep as well. And this goes on for weeks. At first the doc said it was just migraine and that it should take 2-3 days to clear, but 2-3 weeks is more like what they are, and when he mentioned cluster, my heart just sank. It gets worse through the summer because its typhoon season, last year they came almost every three weeks. What do real cluster headaches sound like?

Thanks much!

DebbieKos wrote on Jul 16^th, 2010 at 7:19am:

Yes, migraines and pressure related headaches.

DebbieKos wrote on Jul 16^th, 2010 at 7:19am:

My son didn't have CH as a child he had Migraines and air pressure related headaches, I think you misunderstood that part of my post, no biggy.       His migraines did diminish but he still gets them just not as frequent and he has had a few CH hits in the last two years.  He also still gets the pressure related headaches.  Remember all three of these headache types are Different.

DebbieKos wrote on Jul 16^th, 2010 at 7:19am:

Not that I'm aware of, my Dad still gets them as bad as when he was a kid, worse now and in the last 30 years (he's now 70). 

Some people do have Cycles with their CH ie. a few mo. with CH on and then mo. with no CH hits at all and some people go years with no hits (CH remission). I don't have cycles and My father doesn't to early to tell with my son.



See the links below for different types of headaches on the NIH website or the PDF of same article.

NIH Website Headache Article
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

PDF of Same NIH Headache Article
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Oh, I do hope he doesnt have CH then.

He gets a stuff nose on one side before the headache. When he actually does have the headache he cannot sleep, but he must lie down regardless. He falls asleep IF the meds kick in and after we massage and massage him, sometimes for upto an hour even. Often he will wake with the headache, scream and vomit, and then feel a lot better. But the headache can come and go up to 3-4 times a day even, and last for 2 weeks. Is this common with normal migraines? Everybody expects migraines to last from 1-3 or 4 days, and not come and go like this, so I'm confused now...