Hi,  I am very new to this site, and am desperately trying to get some help for my 6 year old son...Garrett....he has had cluster headaches EVERY DAY for the last year!!!  NOT one day of relief at all!!!  He was maxed out at 8/day... and after 2 family doctors who did not have a clue...an EENT specialist to rule out sinus trouble...and a psychiatrist who told us to see a neurologist...now we are at 3 neurologists....I am ready to pull my damn hair out....what is going on???  This latest neurologist has as much knowledge as a piece of wood!!!  I finally got mad because after 6 months of seeing him,  and NOT ONE test being done I finally got him to get Garrett an EEG...and an MRI.... THEN  after the EEG got ruled out as negative....I had to argue with him to test his blood, urine.....ANYTHING!!!!  I have cried over this too much..I have been a total BBBBB.....because I feel that NO one is listening.....I finally found this site just the other day and finally feel that I am where we can get some answers....I have found out this much so far.....these cluster headaches are very rare in children his age....he started when he was 5 years old...they started off mild and then over a month went to 8 a day...30 - 45 min each...screaming in pain....always over the right eye and face....puffy eyes and stuffy nose immediately...but he also has to void immediately...like he will wet himself if he doesn't go right then!!  I don't understand the connection????  He will void from 2 - 4 times in one episode....we thought we had some luck with Flunarazine...calcium channel blocker...it brought his headaches down to 2 a day....but now it's like he rebounded...they are now back to 3-5 a day.....he takes Elavil at night which helped with the nighttime headaches...but we are now adding Melatonin to see if it helps....last night he took 6mg of melatonin and had 2 headaches ,,,one at 3am and the other at 5 am..both lasted over 1/2 hour....this child has suffered soooo much and I cannot seem to find anything hopeful.....PLEASE IF ANYONE CAN HELP....PLEASE EMAIL ME....I have to use my parents computer and won't be able to get back right away...please be patient.....the neurologist we have been using for the last 6 months is saying that he thinks it is post traumatic stress because his father and I got a divorce...this started before that!!!!!!   :-/    Thanks

Hi Garretts mom,

We have a memeber here who has a little boy with clusters.  I'm sure the minute she sees your post she will be here to help you.

Has your little one been diagnosed with clusters?  It sounds right to me but I'm no doctor.

Has he ever been on 02?  That's the best abortive.  Helen's little one uses it with good results.

My heart goes out to youboth.  Hang in there and we'll see if we can get you some help.

Big Hugs,
Jackie

I e-mailed Helen to let her know about this post.  It sounds like your doc doesn't really have a clue as to what's going on.  Neither drug that you mention is used for clusters and Elavil is not even approved for usage in a child under the age of 12.  

Carolyn

Dear Carolyn ,,  Who is Helen??  How old is her child??  Please have her email me...It would be awesome to talk to someone else who has a child going through this....I felt very lonely and worried before I found this site...and even more isolated with a child with this condition...no one knows what we are going through...Garrett cannot attend school and he had a tutor for awhile but she had to quit...and the school cannot find another one....he is isolated with other kids because of his behavior when he has a headache....he also has Asperger's Syndrome...a form of autism...it is mild but doesn't help.. I am trying to learn everything about this condition but most of the publications deal only with adults ...almost impossible to find one about children....so thanks for the reply....and listening.....Marjorie

Oh, Marjorie, you and Garrett have a lot on your plate. My heart goes out to you.  Helen(aka Le Limey) is a CH sufferer herself, and her son is as well. She has other medical conditions, and, of late, she has been pretty silent. When she sees this, Carolyn is right, she will be here to help in any way she can!
Has anyone mentioned 02 for Garrett?
Where do you live? perhaps we can finda Neuro willing to work with a young child.
There are some wonderful Neuros out there, and since our memebers are from all over the world, wherever you are ,I'll bet there's some help!
Meanwhile, please give Garrett a big hug, please tell him there are people who understand what he goes through..and you, as well!
Never worry bout being a bother, Marjorie! This is a support group, and that's what you'll get here.
Children should NOT have to dance with the beast...........well, noone should!!
Hang tight, Marjorie and Garrett,
PF wishes to you,
cathi

Where are you? As in where in the US or where in the world? I can answer questions and help further by knowing that as it dictates a lot of what I can recommend.

I am in England but I can phone oversea's without problem, if you would like to talk on the phone anytime pm me a number and time you can be reached at and I will call.

My son is now seven and has had CH for five years. It's been a nightmare.

Have you looked into using Oxygen for aborting the attacks?

As regards meds becoming ineffective, I have my own little theory on that based on my nieces diabetes. Her meds are having to be constantly adjusted as she grows because her body needs change. I would hazard a guess that's true of all meds with kids and if something has stopped working it could simply be the dosage needs adjusting. That is something only a doctor can decide though, please don't adjust anything without their explicit recommendation.

I would be very wary of adding any OTC meds to the mix, even melatonin without discussing it with your doctor first. I do give melatonin to my son but that has actually been prescribed by his doctor, it isn't something I have taken upon myself, I wouldn't risk it.

Your son needs to see a headache specialist neurologist. There are some things you are saying that sound like CH but there are some that dont too. With over 600 headache types it takes a headache specialist to diagnose with accuracy and that is the least your kiddo deserves. Wrong diagnosis causes unecessary pain and wrong meds can kill.

There are a lot more questions I would like to ask and suggestions based upon those but I'm reluctant to ask you to put too much detail on a public board especially third party. It just doesn't sit comfortably with me even more so knowing you've gone through what sounds like a traumatic divorce.

I hope I can help more
Helen

My son is 7 and has had cluster like headaches for 8 days now. I couldn't imagine him having this for years. He also has a bad case of tonsillitis and needs his tonsills out but the docs don't seem to think they are related. We had a CT and blood work today and everthing looks good. The neurologist appointment is June 19. He has been on motrin and tylenol but they don't really work, so we are advised to go cold turkey on the meds and wait it out. They also metioned maybe theres something wrong with his eyes so we are seeing a eye doc also. My husband took his vacation early next week so he can stay home with him now as I might loose my job from missing so much work.

Has your child missed alot of school? Mine has and I am concerned with sending him. He wants to go back so bad and finish first grade, he only has 9 days left.

As a CH sufferer myself and one who had a very young child who suffered from migraines (from the age of two years old) I can empathize with JenB.  

We went through hell with my son and his migraines, a few doctors and an emergency room visit later we finally found the right one.  

I don't have a lot of time during the work week, but if we can find out where you live JenB maybe myself or someone here can do some research on your area and help find a doctor that will actually be of help.  

I don't know if you've tried the emergency Hospital visit, sometimes that alone will do the trick, for some reason when they actually see the pain and torture the child is going through that will prompt someone to be of actual help.  That is the route we had to take.  I was afraid for my sons life and no one before that hosp. visit would listen to me until they actually saw the pain he was in.

I just want you to know that I completely understand the fear and pain you suffer watching your child go through that kind of pain.

Best wishes to you and many PFDAN to your son.

P.S. I would Private message your location for your security purposes to anyone willing to do the Doctor research for you.

P.S.S.  I also suffer from the "forced evacuation" problem during cluster attacks.  I'm not sure what causes it but feeling like I have to (not to be gross here but...) urinate immediately during an attack is quite common for me as well.  One of my fav. sayings is the pain literally scares the piss out of me.   :-[