Lancet Neurol. 2004 May;3(5):279-83.   


Epidemiology and genetics of cluster headache.

Russell MB.

Department of Neurology, Akershus University Hospital, Oslo, Norway. m.b.russell@klinmed.uio.no

Cluster headache, the most severe primary headache, is characterised by unilateral pain, ipsilateral autonomic features, and, in many cases, restlessness. Recent epidemiological studies indicate that the prevalence of cluster headache is about one person per 500. Genetic epidemiological surveys indicate that first-degree relatives are five to 18 times-and second-degree relatives, one to three times-more likely to have cluster headache than the general population. Inheritance is likely to be autosomal dominant with low penetrance in some families, although there may also be autosomal recessive or multifactorial inheritance in others. To date, no molecular genetic clues have been identified for cluster headache. Identification of genes for cluster headache is likely to be difficult because most families reported have few affected members and genetic heterogeneity is likely. Future focus should be on ion channel genes and clock genes. This review summarises the epidemiology and genetics of cluster headache.

Publication Types:
Review

PMID: 15099542 [PubMed]
==================================
Neurology. 2001 May 8;56(9):1233-6. 


Increased familial risk of cluster headache.

Leone M, Russell MB, Rigamonti A, Attanasio A, Grazzi L, D'Amico D, Usai S, Bussone G.

Carlo Besta National Neurological Institute, Milan, Italy.

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.

PMID: 11342697 [PubMed]

My maternal grandmother was diagnosed with then decades ago. They sent her to the Mayo clinic and pumped her full of narcotics for years.  Who knows how accurate the diagnosis was, but it seems like that's what she had, and eventually they stopped.  Nobody else in my family has had them, but several people in my family suffer from migraines.

Unless you are 40+ yrs old you don't know how primitive medical knowledge was about treating cluster in the "good old days."

I have 13 siblings and I'm the only one with the black marble! My daughters are 24 and 22...neither has CH!

Joe

Heck, I never though to blame my dad for these. I'm still glad I exist 90% or so of the time...I went ahead and had kids anyway...

I have a sister with CH.  She has been in remission for several years.  I'm hoping to follow her example!

Jeannie

Tim wrote on Feb 10^th, 2009 at 2:38pm:


I hear you on the ulcers!  Same here.  10 years of bottle after bottle of asprin when in cycle.  Never knew the headache would just go away on its own in 20 min.

My mother suffered from what she daid was very severe migrain but sometimes I wonder if it wasn't CH.

-P.

uncle-cluster wrote on Feb 11^th, 2009 at 12:05pm:



I'm a cluster sufferer and I have a child with CH. He was diagnosed at 3 and is now just 7. It IS a nightmare, it's my weak spot, my achilles heel - the thing that causes me more pain than any hit ever could..

But I wouldn't be without him for a minute. Not a damn minute.

Jasper himself said to me when I was upset about him having ch that  "Well I'm not having one now mummy". If he can have the balls to live with it so can I.

I have two other children. Neither have CH. There are a collective of thousands of kids from parents that post here and not even a handful of those have CH.

How much of your life will you give up to the beast?

If I was in a position to have another child now - I would. Even having one child with CH already. I have thousands more "good" hours with him than I do bad ones. I have far more joy from him than I do pain.

To quote a now absent friend, Never let the fear of CH stop you from living your life.

Don't forget, bad and all as CH is - there are worse things a child can inherit.

Regards
Helen

I was diagnosed a long time after all my children were born. Even then I had little thought or idea about any possibility that it could be inherited via me.

If I was younger and did not have any children and hypothetically they would inherit it from me then I would not have any.

Having said that, there is no evidence that it is inherited. So we do not know.

This is my personal opinion and I have no wish to persuade others as to it's veracity.

Interesting thread.

Ellick

Hi Jeannie,
Im sorry to hear about Morgan & I hope she only gets better!!  I understand that you were trying to give me an example… and i know she is the light of your life

But I would like to re-ask everyone my question …
““If anyone could give me the answer to the hypothetical question of “what if” there was a % chance that we may transfer this CH to our spouses…
what would we do then & would we take that chance and get into a relationship. Say it was sexually transmitted …  ‘hypothetically’ what would one do ?
if they would see a full blown attack (a number of times a day...) would they take the chance ? ”” 

btw-thank you Ellick for your honest reply
its how I feel , it strengthens my sadness… but I’m a realist

I have just sat and asked Jasper what he thinks about his custard headaches (That's what he calls them
He has now had four full cycles of 5-6 months each time so technically he is episodic although in actual fact, he's suffered CH for a larger percentage of his life than most on this site.

I'm chronic. This is just os you have some background of how it affects our family.

I asked him as I said what he thought about custard headaches and he said "What about them?" so I said would you rather not have ever had them and he said "I'd rather you didn't have them mummy, it makes me sadder when you have them because when I have them I have you".

The irony of this is unbearable. I can't bear the pain of him having CH and until today, I didn't know it was his biggest pain too. I guess it's an instinctive CH trait, the agony of seeing someone else suffer is far greater than our own pain whatever our age.

Damnit I can hardly see through my tears writing this. He is one incredible kid and wise and compassionate way beyond his years.

I find it so hard to believe he is only seven right now.

He is also a naughty little boy who gets into his fair share of mischief believe me! He loves playing top trumps, on the xbox 360 and drawing and writing stories. He loves facts too and the thing I hear most from him is "Mummy do you know..."

I guess what I'm trying to say is that he is a normal little boy who has an abnormal condition which he refuses to let get him down.

The risk of getting CH is small, the risk of passing it on appears to be unfounded to minimal according to research to date.

My conclusion? There is a far greater risk of making excuses for reasons not to live your life than there is of the "risk" of CH.

Jeannie wrote on Feb 13^th, 2009 at 3:02pm:


There is nothing I'd like more than to bring Jasper to a convention - and I will! He has a lot of family he's going to love (but I will DEFINITELY be seeing you this summer!!!)