My daughter is 5 1/2 and has been having headaches for a few days then it gets better and then the come back again.  We have done so many different tests and now they are thinking that she has cluster migraines.  I am wondering from those that have them if I could get some insight as to what might cause them for you or how you get rid of them.  Ibuprofen seems to help to an extent but sometimes she needs to sleep or just lay down to help it.  Any help in trying to get this figured out would be greatly appreciated.

Thanks in advance,

Sweetpea :)

Hi Sweetpea,

I am sorry to hear that your daughter is in pain.

Was the diagnosis made by a pediatric neurologist specialising in headaches?

No, it was made by her pediatrician. We have done so many blood tests and I have been blown off by docs too. I just want her to feel better.

I understand how upsetting it is to see your little girl suffer.

I would consult a pediatric neurologist that specialises in headaches.

There are hundreds of different types of headaches and pediatricians or general practitioners are not the best place to go to for headache diagnosis or treatment. This forum is full of examples to support this theory.

CH hallmark symptoms can take years to crystalize and given that you consequently may be dealing with a multitude of different possible scenarios other than CH, you should get a second opinion from a headache specialist before settling on your pediatrician's diagnosis.

The root cause of CH is unclear and regrettably there is no way of "getting rid" of them. They can only be managed. Since this management would involve medication, which for CH varies distinctly from other headache types, it is in my view critical, particularly for children, that the treatment regime (if indeed it is CH) is managed by a specialist and not an all-rounder.

In preparation of your appointment, I would keep a very detailed diary of your daughter's headaches, including their duration, their frequency, their intensity, the time of the day, what may trigger them, how she behaves during her headaches and which medication works and which doesn't.

I very much hope that your little one will be better soon!

Sounds more like she is having a cluster of migraines than has cluster headaches.  An almost universal cluster trait is that laying down makes them worse.
Cluster headaches - no know cause, no known cure, only treatment.

Treating complex headache disorders is such a complex area of medicine and so few docs, including many neurologists, receive appropriate training that it's essential that you locate a specialist.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.

neuropath wrote on Apr 10^th, 2010 at 4:26am:

I understand how upsetting it is to see your little girl suffer. I would consult a pediatric neurologist that specialises in headaches. There are hundreds of different types of headaches and pediatricians or general practitioners are not the best place to go to for headache diagnosis or treatment. This forum is full of examples to support this theory.

HOWEVER, it is possible that the doctor in this case  has already consulted an expert.  My PCP consults specialists when the diagnosis is something out of the ordinary.  Either way, you should have been referred to a pediatric headache specialist for confirmation and treatment.

Thank you all so much for the replies!  :)  I don't think that my pediatrician consulted a specialist but I will talk to him so we can get in to see one.  I have started documenting when they are happening but most of the time it is at school and then she comes home for the day.  It is really hard for her to miss school and it isn't good that she is missing this much school.....especially Kindergarten.  Thank you again for the replies....I will keep you posted as to what the doc says!

sweetpea wrote on Apr 10^th, 2010 at 5:48pm:

Thank you all so much for the replies!  :)  I don't think that my pediatrician consulted a specialist but I will talk to him so we can get in to see one.  I have started documenting when they are happening but most of the time it is at school and then she comes home for the day.  It is really hard for her to miss school and it isn't good that she is missing this much school.....especially Kindergarten.  Thank you again for the replies....I will keep you posted as to what the doc says!

Please keep us posted.  I don't know her exact situation but Kindergarten isn't the worst time to misses classes.  She COULD repeat it without much stigma if she falls too far behind or catching up isn't too tough at that age.

I will be praying for you all. 

Hi Sweetpea, take a look at my reply to your posting "Daughter" under the section "Children with Clusters"...I replied last night, hope it helps :)