|
||||||
|
Title: Is it hereditary? Post by moonhoney2 on Jun 28th, 2006, 11:31am I'm full of questions today. :lol Is CH hereditary? I haven't read anything about that, but it doesn't mean it's not so. I'm worried about my boys acquiring it. :( |
||||||
|
Title: Re: Is it hereditary? Post by Redd715 on Jun 28th, 2006, 11:39am The professional jury is still out on this, but there does appear to be some familial connection. Pleanty of folks will ring in on this, I'll share my family experience. From accounts of family members, (seeing as correct diagnosis is rare in any respect) both my Grandmother and Great Grandmother on my Mom's side had CH. |
||||||
|
Title: Re: Is it hereditary? Post by seasonalboomer on Jun 28th, 2006, 11:39am on 06/28/06 at 11:31:13, moonhoney2 wrote:
I haven't read about any specific genes that have been identified as the culprit but there are quite a few of us who have other CH sufferers in our families (and family trees). I would venture to say that the correlation seems similar to how migraines seem to either run in your family or not. Which would certainly point to some neuro or vascular issue present in our genetic make-up, they just haven't named it yet. scott |
||||||
|
Title: Re: Is it hereditary? Post by moonhoney2 on Jun 28th, 2006, 11:51am I just talked to Sean about this and he reminded me about his father's headaches. His father used to get these awful headaches, to where he was rolling around moaning on the bed (sound familiar?). He'd eat bottle after bottle of aspirin. So much aspirin that it ate away at his stomache and liver. IIRC, his liver ruptured and that is how he died. Anyway, they had no ins back then either, nor the $$ to go to the dr, therefore no official diagnosis. I forgot all about that. He died before we became involved. I had only met him once when we were kids. :( |
||||||
|
Title: Re: Is it hereditary? Post by Bob_Johnson on Jun 28th, 2006, 1:24pm I've seen 2 or 3 reports out of Italy (where there is some active work being done on Cluster, it appears) which show a modest family pattern. The inheritance factor does not appear to be very strong--but, yes, some. ----------------------------------------------------------- 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] |
||||||
|
Title: Re: Is it hereditary? Post by Charlotte on Jun 28th, 2006, 1:29pm We have a wide variety of headaches in my family. However, I am the only one I know of who has clusters. There could easily be more, and if they are episodic and I don't see them and recognize, they may not even know about it. My great aunt had bad headaches and her head swelled up in "lumps" which could have been the trigiminal nerve. Charlotte |
||||||
|
Title: Re: Is it hereditary? Post by Bob P on Jun 28th, 2006, 2:35pm http://www.ouch-us.org/cgi-bin/survey/gene_survey.cgi?survey_name=gene |
||||||
|
Title: Re: Is it hereditary? Post by jenrob2006 on Jun 28th, 2006, 4:01pm My doctor just told me that because I am in the minority of CH sufferers, (only 10% are women) that the chances of me passing this on to my children is higher than it would be if I was male. |
||||||
|
Title: Re: Is it hereditary? Post by jon019 on Jun 28th, 2006, 5:31pm on 06/28/06 at 16:01:26, jenrob2006 wrote:
I don't see the logic in that. Did he/she explain further? In my case no other CHers that I know off. Some migraine. What I really want to emphasize is that it is pointless to worry about whether you may pass CH on or not. The chances are minimal and there is NOTHING you can do about it anyway (short of opting out of parenthood altogether, which would be drastic and foolish if for this reason alone). Better yet, learn all you can about the beast so you can help yourself, and will be better prepared if you need to help a child. Jon |
||||||
|
Title: Re: Is it hereditary? Post by floridian on Jun 28th, 2006, 7:15pm on 06/28/06 at 16:01:26, jenrob2006 wrote:
Not proven - we know relatively little about the genetics of CH ... it can run in families, but generally does not. Just brain-storming here: The only way that your doc could be right is if CH is caused by a mutation in the mitochondria DNA which all people get exclusively from their mother. Most people think that you get exactly half from mom, half from dad, but that is only true for the chromosomal DNA. There are mitochondrial irregularities in clusterheads - but no one has looked at it in terms of genetics (AFAIK). There is an energy deficit, but no one has shown that it is caused by the mitochondria itself - could be that the mitochondria don't get what they need from the rest of the cell, which is conventional genetics. If it was caused by the mitochondria, then ALL of a woman's children would be at equal risk - that doesn't seem to be the pattern. Most people with cluster headaches do not have kids that have clusters - it is possible, but it is not the norm. http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Genetics |
||||||
|
Title: Re: Is it hereditary? Post by Kris_in_SJ on Jun 28th, 2006, 7:45pm I tend to believe that clusters might be similar in genetic tendencies to diseases like ALS (Lou Gehrigs Disease). While for a small number, there is a familial link, for the vast majority, no such background applies. My sister and maternal aunt suffer from migraines. I, on the other hand, never had a headache of any kind until the age of 42 when the Beast reared his ugly head. After exhaustive questioning of my family - immediate and extended - it appears I'm the only one in my line with this horrible syndrome. Kris Edited to add .... I hope I'm the last! |
||||||
|
Title: Re: Is it hereditary? Post by Pinkfloyd on Jun 28th, 2006, 11:15pm on 06/28/06 at 17:31:12, jon019 wrote:
Whatever happens, happens? I'm not one either to worry about things you have no control over, but, it's not the mantra most people want to follow, when thinking about their kids. on 06/28/06 at 17:31:12, jon019 wrote:
There is something everyone can do about it. on 06/28/06 at 17:31:12, jon019 wrote:
Better yet, get involved and work to find better treatments and push for research to find a cure. Research on rare diseases need to be pushed by the sufferers themselves as there are not enough dollars involved for the "system" to do it for you, or your kids, or your grandkids. If we don't worry enough about our kids future to do something about it, who will? Not picking on you, just making a point. Bobw Join OUCH....or any other organization and become an active part of the solution, that will find a cure for someone's kids. |
||||||
|
Title: Re: Is it hereditary? Post by jon019 on Jun 29th, 2006, 12:52am Hi Bob, Got your point. No offense taken whatsoever. It is why I'm here. Acutally expected and HOPED for this kind of reaction. My point, and I hold this dear, is that Docs and others who scare people about what MAY happen to their kids is a disservice and an abomination. I don't disagree with ANYTHING you say. Research? Funding? Consideration? Damn right! But really Bob, there really IS nothing you can do to prevent your offspring getting CH. It is rare, the chances ARE minimal. Should those of us with it waste our precious moments in this short life worrying about passing it on? Nope, will never believe that! Which is not to say that the fight for consideration is pointless. I do and will continue to fight for that consideration. One method, which I encourage all clusterheads to pursue, is the education of the pharmacists of the future. The Wingate Pharmacy school patient interaction program was one of the best things ever to happen to me. A wonderful experience which allowed me to relate and educate a student on our unique problems and needs. She got it, I know somewhere down the line a person with this crap will be benefit because of our interaction. One small step at a time. No kid or ANYBODY having to suffer this nightmare. I'm on board. Thank you for the response. It was truly appreciated! Regards Jon |
||||||
|
Title: Re: Is it hereditary? Post by LeLimey on Jun 29th, 2006, 4:01am We have a genetic study taking place at Leicester University here in the UK and I know Dr Noah Roasen of the Jefferson Headache Centre in PA was talking about planned research at our convention last year. The scientists here gave a talk at the OUCH UK conference last year and said they have found out quite a bit so far, enough to determine it can be hereditary at any rate. I don't have notes from it, stupidly, and I don't remember exactly what they said so I won't get it wrong by attempting to repeat it. To be honest I spent most of their talk trying to hold back tears. My son and I have both given blood for research. He is now four but was diagnosed with CH by Professor Goadsby at the age of three. I am a cluster headache sufferer too and I'm female. To the best of my memory I believe they did say there isn't any evidence to say women have a greater risk of passing the affected gene on than men. I hope that helps Helen |
||||||
|
Title: Re: Is it hereditary? Post by Katherinecm on Jun 29th, 2006, 10:39am I am pretty certain from reading descriptions of his pain that my dad had them and I do too. I suspect it's like most other genetic disorders: you must have both the gene for CH and the conditions in your life have to be correct for that gene to manifest itself as CH. We just don't know what those are yet. |
||||||
|
Title: Re: Is it hereditary? Post by moonhoney2 on Jun 29th, 2006, 12:17pm My son and I have both given blood for research. He is now four but was diagnosed with CH by Professor Goadsby at the age of three. Oh dear god! That poor baby! I can't imagine someone so young having to deal with this. My older son is 3 and it just breaks my heart to think about that. We are not going to stress over it because there is nothing that we can do to prevent it. But I was just curious if it's something that we have to be prepared for. |
||||||
|
Title: Re: Is it hereditary? Post by LeeS on Jun 29th, 2006, 2:01pm My greatest fear too - daughters ages 2 and 6 - but Bob hit the nail on the head: there's loads we can do to help with what is essentially our disease. BTW, despite Jasper's neurological affliction (and his Mother's innate madness ;)) he is one of the most normal chaps you could ever meet. He's recently dislocated his shoulder and elbow and is still acting exactly as he should be at that age - I blame mom ;) I (and so many others) am determined to make sure (whatever the genetic risk) that fewer and fewer people have to go through what we have to endure. -Lee |
||||||
|
Title: Re: Is it hereditary? Post by LeeS on Jun 29th, 2006, 2:07pm This is a very good 'thesis' in this respect by the way (if you've a spare couple of hours). http://diss.kib.ki.se/2005/91-7140-363-9/thesis.pdf -Lee |
||||||
|
Title: Re: Is it hereditary? Post by Charlotte on Jun 29th, 2006, 2:46pm The only reason statistics show that fewer females have this is because the Dr's keep trying to tell us and everyone else we don't have it. One of my good Drs that moved on had diagnosed me as combination vascular headaches, (he included cluster ha and migraine) and told me to pay attention to twinges and burnings in the face (end of trigiminal nerve branches) and take my meds at first sign. After he left, I've been told I didn't have any headaches, I didn't have cluster headaches, etc., and spent several years ignoring this or beating my head against the wall of medical compassion. I now have a new doc who is willing to learn about cluster headaches. I can communicate with him by email which (for me) is a lot easier than talking in person. I hope that we contribute to the future, here. There is a lot of talent on the board, and very generous people. The amount of research going on here by individuals is amazing. Even if our children and siblings and cousins don't have this, there will always be someone, and it will be hard for them if no one knows what it is. I hope the diagnosis become easier, including the related headaches, and also that we females get counted. |
||||||
|
Title: Re: Is it hereditary? Post by LeLimey on Jun 29th, 2006, 4:41pm on 06/29/06 at 14:01:39, LeeS wrote:
Aww Ting Tong, I do believe that's the nicest thing you've ever said to me. I'm touched - and you are dead matey! ;) Moonhoney, my best advice to you is just enjoy your childrens childhood, it goes too fast as it is. Look on the bright side, IF any of your kids develop CH they are so much luckier than the kids of someone who hasn't a clue. You know what to do and you can teach them to fight it. Charlotte I agree with every word you've said. More than anything we need to make our doctors aware that kids and women get CH so they get diagnosed and the correct treatment. As the CH.com t shirts say.. "Together we FIGHT!" and there is no truer statement :) |
||||||
|
Title: Re: Is it hereditary? Post by floridian on Jun 30th, 2006, 10:35am on 06/29/06 at 14:07:42, LeeS wrote:
Nice link. Thanks, Lee. |
||||||
|
Title: Re: Is it hereditary? Post by mynm156 on Jul 2nd, 2006, 10:52am My 17 year old son started having them about a year and a half ago. He has had two seasons with them lasting about two months. He also has Migraines as well poor kid cant get a break! |
||||||
|
Title: Re: Is it hereditary? Post by Sandy_C on Jul 2nd, 2006, 1:18pm I don't know if CH is hereditary or not, but both of my grandmothers had severe migranes - they would have to go to bed (or to their bedroom) with one of their "sick headaches" (never knew if they laid down in a dark room or banged their heads against the walls). Two of my aunts on my mother's side also wound up with heacaches, although my mother did not. I began getting migranes after the birth of my first child, although mine were (and still are) extremely mild. Then, at age 53, I wind up with CH. I now am wondering if any of those "sick headaches" of my grandmothers and aunts were actually CH. All are gone now and have been for many years, so there's nobody I can ask. It's interesting. Sandy |
||||||
|
Title: Re: Is it hereditary? Post by Beastfodder on Jul 7th, 2006, 4:27pm I too have memories of my Dad getting CH - so there's circumstantial evidence there. |
||||||
|
Title: Re: Is it hereditary? Post by mzrolwes on Jul 7th, 2006, 5:19pm My mom's parents both got headaches, but i have no idea what types. They both died when I was a baby. My mom and dad both get headaches but no clusters. I get CH, migraines, sinus, tension and regular run of the mill headaches. GO ME! I'm an over achiever in the headache department. I think CH will be one of those things that *run* in some families and then there are other people who are just lucky enough to get them all on their own. It seems to me that CH's are different with every sufferer anyway, plus there are those who haven't been diagnosed b/c they are too young or too female or too whatever. It would be interesting to see how it could or could not be passed on. I feel bad for my kids b/c my husband and I both get migraines. That's a bad enough of a thing to pass on and I certainly hope I'm the only one that has to suffer thru CH's, BUT should one of my children end up with them i will know how to help them and find doctors who are willing to listen. That's the most important thing we can do. Help others get the treatment they need. |
||||||
|
Title: Re: Is it hereditary? Post by catherinelane on Jul 8th, 2006, 6:52pm my grand mother my mother my sister my nephew and myself all suffer severe (hospitalised sometimes) migranes but as far as i know im the only one with ch |
||||||
|
Title: Re: Is it hereditary? Post by georgej on Jul 8th, 2006, 7:55pm I guess the only way we'll really know how strong a genetic component this syndrome has is (eventually) through statistical analysis and molecular biology. It apparently has some genetic component. Anecdotally speaking though.... I think I'm the only one on either side of my family--for a very long time, anyway. The generations of my family have tended to be very small in number, and so there are quite a few anecdotes around about family members who are even a couple of hundred years dead. None of the stories mention headaches. I have a daughter, and she does not have CH. I suspect, however, that there is nothing new about CH. It has a quality about it that is too well-defined to be anything new. I'd imagine it has haunted small numbers of our species for tens of thousands of years. Hmm. I wonder if there has ever been any evidence that a syndrome with aspects of the physical symptoms of CH (should be easy to spot) exists in non-human primates? Dunno, but it would be interesting to know. Best, George |
||||||
|
Title: Re: Is it hereditary? Post by frizzle on Jul 9th, 2006, 6:42am Quote:
Amen!! Because as you know, females are notorious for complaining for nothing but the attention (struck a nerve here can you tell!!) My first 3-4 dr's were like this - oh, you're stressed - go see a psychologist, are you having troubles at school? ( i was 17 or so at the first cycle), is your boyfriend mean to you? (wish someone would have kept up THAT line of questioning at the time though - so I could have booted him to the curb sooner!!), sinus infections? teeth issues? need new glasses? I guess we've all been down these roads too. What I always hated was the "dismissive" dr's. I'd rather hear "I have no idea what this is, I'll see if I can get someone who does to help you" than to have them just try things like you are a guinea pig. And to the OP - I have 2 first cousins with CH. One diagnosed, one still struggling either with his dr or with denial, I'm not sure which yet. The first cousin and I had no idea we both had them until years later at a wedding he was talking about having an oxygen tank at his bed, which I thought was strange at the time and asked about it. Now we are a great email support system to each other. |
||||||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |