Hello everyone.. I have been a cluster suffer myself but I am worried about my daughter.  Starting when she was about 5 she has had what I believed to be just migrains, she holds her head asks me to help her take the pain away scared, screaming crying until she finally falls asleep about a hour later.  Last night at 2:00 am she wakes me up

She described the pain to me as someone ripping her eye out, said it hurt more when she was laying down, begging to shower or do something anything I could do to help.  She took a few hits of my oxygen (set low) and within 5 minutes was fine.

Now she has not had a headache in several months prior and hers are only once every few months if that but my concern this is where she is heading.  Is it genetic can it be passed down?

Tammy

The chances are a smidgen higher for relatives of a CH'er, but it's still small. Have you had the pediatrician start a work up yet? We've seen some youngsters with CH but it's pretty rare. On the bright side, if it turns out she does, how awesome to have a mom who has already paved the way. My 2 daughters are 26 and 28, neither has shown any headache tendencies. Hoping the same for yours.

Joe

Hi Tammy,
My CH's started at age 11.  I am adopted and do not know anything about my biological parents medical backgrounds.  My CH's began a few weeks after a severe closed head injury. 

Try to keep a log/headache diary and bring with your daughter to see your headache specialist when her next cycle begins. 

Good luck!

-Gregg in Las Vegas

Mine started at 17 with no one in the family having them.  I also did not have any head trauma.  What a scary thing to go through at such a young age.  I know it's scary as an adult.

Quote:

Neurology 2001;56:1233-1236 Increased familial risk of cluster headache M. Leone, MD;, M.B. Russell, MD, PhD, DrMedSci;, A. Rigamonti, MD;, A. Attanasio, MD;, L. Grazzi, MD;, D. D’Amico, MD;,  S. Usai, MD; and G. Bussone, MD From the Carlo Besta National Neurological Institute (Drs. Leone, Rigamonti, Attanasio, Grazzi, D’Amico, Usai, and Bussone), Milan, Italy; and Department of Neurology (Dr. Russell), Copenhagen University Hospital, University of Copenhagen, Denmark. The authors studied the occurrence of cluster headache in the families of 220 Italian patients with cluster headache. A positive family history was found in 20% (44/220) of the families. Compared with the general population, first-degree relatives had a 39-fold significantly increased risk of cluster headache. Second-degree relatives had an eightfold significantly increased risk. The increased familial risk strongly supports the hypothesis that cluster headache has a genetic component in some families. Increased familial risk of cluster headache -- Leone et al. 56 (9) 1233 -- Neurology

Thanks OUCH

Added to my documents collection, thanks Bob.

Joe

CH is most probably genetic, but having the gen does not necessarily mean having textbook CH cycles all your life. Some researchers suggest that only 1 of 5 Ch'ers is "active" and most wouldn't have more than a few attacks all their life.

I had my first cycle at the age of 11 and did not have more than 10 daily attacks a year until I was over 30. Got my first nocturnal attack at 23 or 24 and the first full 4-5 week cycle with nocturnal attacks at 36.

i was scared to read on once i read the title . horrible thought..

But thinking back, i did have one or 2 what i now now as hits when i was 12 or 13, only to start "propperly" when i was in my early 20s..

Dr silver tells me there is a small genetic factor, i really hope she doesnt develop to CH, that would be horrible as a parent to see your child suffer like that. but as mentioned above, if that was the case, she would be better equipped to handle it

Do you have a headache specialist near you? I would see about a referral from your GP given your family history.

My mother and I both have episodic CH and my youngest daughter has been diagnosed with hemicrania continua, so the gene seems to be quite strong in my family. I live in dread of my daughter's headaches morphing into CH so I understand your fear.

Best of luck in getting answers.

I think I started having cluster headaches at 11 or 12. The latest neuro I saw says they must have been migraines. Right.

I can remember getting hitas early as 7. But they were not as often. At the time, my mother would just give me ice and it would subside and go away slowly. Didn't become the Beast until about 11 or 12 as well. I do worry about it as well, since I have 2 boys, 5 yrs and 10 months. Best wishes.

Patrick

Quote:

Neurology 2001;56:1233-1236 Increased familial risk of cluster headache M. Leone, MD;, M.B. Russell, MD, PhD, DrMedSci;, A. Rigamonti, MD;, A. Attanasio, MD;, L. Grazzi, MD;, D. D’Amico, MD;, S. Usai, MD; and G. Bussone, MD From the Carlo Besta National Neurological Institute (Drs. Leone, Rigamonti, Attanasio, Grazzi, D’Amico, Usai, and Bussone), Milan, Italy; and Department of Neurology (Dr. Russell), Copenhagen University Hospital, University of Copenhagen, Denmark. The authors studied the occurrence of cluster headache in the families of 220 Italian patients with cluster headache. A positive family history was found in 20% (44/220) of the families. Compared with the general population, first-degree relatives had a 39-fold significantly increased risk of cluster headache. Second-degree relatives had an eightfold significantly increased risk. The increased familial risk strongly supports the hypothesis that cluster headache has a genetic component in some families. Increased familial risk of cluster headache -- Leone et al. 56 (9) 1233 -- Neurology

Bob, don't wish to get off to a bad start, or have an argument with the Alumni here. Just my 2 cents worth...

You probably, fully realise that the study is only statistical evidence, not conclusive scientific proof of a carried gene in "hereditary" cases of CH.

The study raises a few questions for me.
Where is the control group for this study?
Families that arrive for clinical trials already suspect hereditary involvement, which in my view, shows significant bias within the study group. Where study participants are sourced often plays a major role in the outcome(s). I cannot obtain a full copy of the study to research it, perhaps to my peril here, in posting about it...

The quote does not suggest whether or not trial participants, or their offspring met IHS criteria for CH.

To answer Tammygue's original question - My Grandmother had Migraine all her adult life, no CH.
I have had CH from birth, first presenting at age 4, also experiencing Migraine myself. So yes it can happen young. As a contributor/moderator on the Aussie CH site, I have seen perhaps 3 or 4 cases of childhood CH, confirmed by a specialist using IHS diagnostic criteria, none of which had any family members with any other reported headache type.

I am not doubting the study results, the scientists know more than I and I defer to their expertise. I can only go with what I have found in my research on familial CH and my experience in dealing with CH patients online. If genetic in origin, the gene responsible for CH is yet to be identified. When identified, it has to be established that it is in fact, hereditary. This has not yet been validated in genetic studies. It is still a target in genetic studies, but I await (with interest) the outcomes of genetic studies into hereditary CH and whether a specific gene can be named and/or carried from parent to offspring.

As I posted when asked about this in Oz:
Hereditary CH (My summary):
Firstly, although there are a small group of families that suspect hereditary involvement in their CH conditions, the evidence for inheritance is strictly statistical, anecdotal or at best, strongly suspected. No single hereditary gene has yet been implicated in CH.

In layman's terms; the jury is still out on hereditary cluster headache, more studies are needed. If you do the maths, the incidence (or prevalence) of CH occurring within families is statistically about the same (very marginally higher) as would be the occurrence of CH in the general population. The difference in reported familial CH and CH occurring in the general population purely by chance, is a small one. At least 2 genes have been identified as hereditary in Migraine headache, specifically, not cluster headache at this stage. These 2 genes do not specifically show up in CH patients.

A selection from the current literature on genes sought in CH conditions:
We have established a large cohort of CH families in which we have previously reported a genome-wide linkage scan, isolating a number of putative linkage loci. Despite this, a single causative gene is yet to be identified, largely due to substantial genetic heterogeneity. The significance of these variants in CH pathogenesis remains to be determined; however these results provide further evidence for a potential genetic predisposition to this debilitating disorder. Potential linkage was identified at four possible disease loci in Danish kindreds, yet no single chromosome location generated a lod or NPL score of recognized significance. No deleterious sequence variants of the HCRTR2 gene were detected by comparison to wild-type sequence. Association of the HCRTR2 gene was not replicated in this large dataset, even when the data were stratified into distinct populations.
CONCLUSIONS: Cluster headache is a complex genetic disorder, with possible phenotypic and genetic heterogeneity compounding attempts at gene identification.

thejournalofheadacheandpain.com/conten/pdf/1129-2377-1-
S1-P34.pdf

ncbi.nlm.nih.gov/pubmed/16801656

The jury is still out on that one, I reckon.

Cheers, Ben.

WOW! Thanks CH Brain, another solid researcher on the board, we welcome your types here. You hit the nail squarely on the head regarding the problems with most of our CH studies, anectodotal vs. solid research. Ours is such an orphan disorder, that large number studies are hard to come by.  :-/

Joe

A very well written post showing a good understanding of how hard it is to do good, accurate science investigations that give meaningful and repeatable results.

Unless investigations are down well, avoiding or at least accounting for bias then the results are not worth the paper it is written on.