Hi, I just found this site. I've had these for a long time, but the last few episodes have been way worse and concentrated. My father had cluster headaches exactly like mine, for may years I was in denial, thinking I just had occaisonal real bad sinus trouble, they couldn't possibly be as bad as Dad's. No question for the past 10 years though. A big 2 month episode every 1-4 years. Anybody else inherit these? (My dad's stopped completely when he was in his 60's, so I'm hopeful.)

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]

Yes there are several of us that had a parent with Clusterheadaches. My father's also abated in his late 50's, until just before he passed from cancer - triggered by some of the medications he was being treated with.

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.

Thanks, that answers my question. My dad tried every medication he could find, some of them worked on one episode but never again, ended up with all kinds of ulcer/intestine problems from his fancy medication diet, but at least the headaches went away.

-Tim

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

My Dad had them too.  His left for good when he was in his late 40s.  I'm there with no sign of relief yet.  :-/

I'm just hoping none of my kids inherit it from me...

-Dennis-

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

Joe

SHIT (excuse my French)
This has been one of my biggest fears… I’m turning 30 this year and living with this beast which never lays off or sleeps… I think only a 9mm could kill it ;)
Don’t think I’ve had a “real” relationship since it all started (and im a pretty happy guy, very active ,  always out having a good time… good job... people just don’t know… ).
But this “handicap” im bringing into the relationship and then just the thought of MAYBE giving it over to my kids… no way !
I come from a big family & kids is a thing I’ve always wanted…
but I don’t think I could live with myself

this post has just depressed the hell out of me

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...

My late husband who had episodic CH was the only one in his family and extended family with CH, although many of them have migraines.

Although in some cases there appears to be a genetic component which can be passed from one generation to the next, no one has yet confirmed definitely the gene allele for the diagnosis of CH. The process at best seems to be random.

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

Jeannie

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

SHIT (excuse my French) This has been one of my biggest fears… I’m turning 30 this year and living with this beast which never lays off or sleeps… I think only a 9mm could kill it ;) Don’t think I’ve had a “real” relationship since it all started (and im a pretty happy guy, very active ,  always out having a good time… good job... people just don’t know… ). But this “handicap” im bringing into the relationship and then just the thought of MAYBE giving it over to my kids… no way ! I come from a big family & kids is a thing I’ve always wanted… but I don’t think I could live with myself this post has just depressed the hell out of me

I would not let it control your life and future like that.  There is no proven genetic link.  There may be something, but nothing with overwhelming numbers yet.  A lot of people have CHs and kids that never get it.  I know it's a fear, though, and I'd never want to pass it on to my kids, but it also shouldn't hold you back.  Treatment is getting better & better anyway, so even if it was passed along, it wouldn't be the end of the world, and it seems you are likely not to pass it on.

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

Thanks, that answers my question. My dad tried every medication he could find, some of them worked on one episode but never again, ended up with all kinds of ulcer/intestine problems from his fancy medication diet, but at least the headaches went away. -Tim

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.

I don't know of anyone  in my family that had CH.

My sister has some headache problems that were due to a tumour near one of her eyes. Several operations fixed it but she was advised to never drink alcohol which she never has in over 30 years.

Two of my sons have similar allergies to me  and the same sinus type problems, so I worry a bit about them. I have already told all my kids about CH and told them if they get any symptoms to get some help from me straight away.

At least they won't have to go through what I did for so many years, undiagnosed with no abortive treatments.

Ellick.

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

SHIT (excuse my French) This has been one of my biggest fears… I’m turning 30 this year and living with this beast which never lays off or sleeps… I think only a 9mm could kill it ;) Don’t think I’ve had a “real” relationship since it all started (and im a pretty happy guy, very active ,  always out having a good time… good job... people just don’t know… ). But this “handicap” im bringing into the relationship and then just the thought of MAYBE giving it over to my kids… no way ! I come from a big family & kids is a thing I’ve always wanted… but I don’t think I could live with myself this post has just depressed the hell out of me

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

wrote on Feb 12^th, 2009 at 10:16am:

uncle-cluster wrote on Feb 11th, 2009 at 12:05pm: SHIT (excuse my French) This has been one of my biggest fears… I’m turning 30 this year and living with this beast which never lays off or sleeps… I think only a 9mm could kill it ;) Don’t think I’ve had a “real” relationship since it all started (and im a pretty happy guy, very active ,  always out having a good time… good job... people just don’t know… ). But this “handicap” im bringing into the relationship and then just the thought of MAYBE giving it over to my kids… no way ! I come from a big family & kids is a thing I’ve always wanted… but I don’t think I could live with myself this post has just depressed the hell out of me 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 understand what you and others are saying… but please note how many times you said (used the word ) in your message “I” this … “I” that… “I” enjoy…  “I” etc… (all about you..) What about the kid ? I mean this with no disrespect !!!
And you are right about that fact that kids can be born with much worse things + things can happen to us as life go on..  but if this would be something that I actually gave over to my kid knowingly before I had him/her…. (and I’m speaking from the point of view of not even a parent yet…) .
or what if there was a % of giving this to your spouse/ partner sexually ? what would you do then??
I know this message sounds harsh & im off the deep-end… but on the reg. I consider myself living a more normal life than most people (& I suffer from this chronically..) but I do have to deal with it every day =  change & plan things out + I have things that worry me ….

If anyone could give me the answer to the hypothetical question of “what if” there was a % that we may transfer this to our spouses… what would we do & would we take that chance (would we let them ? –if we cared) & get into a relationship with them…. if they would see a full blown attack (a number of times a day...) would they take the chance ? let me know

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

Hey Uncle C!

I understand your fears... I really do.     I have a wonderful 10 year old daughter named Morgan.  She was born with a kidney disorder that I PASSED ON TO HER.  She has been sick a great deal of her life.  She has missed out on a lot due to being hospitalized and faces possible complications as she gets older.    She is also one of the happiest, confident, secure, compassionate, kind, loving, smart, ( you get the idea) children I know.  

Anytime one brings a child into this world there is a risk.  Will they be healthy?  Born with ten fingers and toes?  Will they be happy? Will they have CH?  One never knows.  You deal with what life throws at you.  It works out.

Live life! ! ! [smiley=hug.gif]
Jeannie

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

Okay..... What % chance?    If it were 100% that I would give it to my spouse, I would have thought twice before being in a relationship.   If I could use precautions to avoid it,  I would go that route.

I just think that the chance is so small that  the benefits outweigh the risk.  The joy of being in love and then  raising a family is worth the risk ( to me.)  Maybe I am just more selfish than you are.  I just hate to see the beast rob you of a normal life.

Hugs,

Jeannie

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.

Well said my dear, Helen.    Morgan and Jasper should meet someday.  

Jeannie

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

Well said my dear, Helen.    Morgan and Jasper should meet someday.   Jeannie

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!!!)

All I am hearing is “me me me”
Im living a good life (with some snags) & dealing with my CH like a ninja ! nothing gets in my way (but these questions..)
Again -  Im talking about inflicting pain on other people!? While others are talking about “us” CH people “enjoying life to the max” (good to market).  
your Jasper started his “custard”s when he was 3 ?? I have 14 Nieces & nephews (all under the age of 16) im around them ALL the time & I experience the joy my sisters have. When I ask these questions… they only come out of love & consideration  

Of course the questions come from " love and consideration."   But so do our answers.  

The risk is just so small.  It  is like saying that you would choose not to have children because he or she might be struck by lightning someday.


Jeannie

uncle-cluster wrote on Feb 13^th, 2009 at 3:30pm:

All I am hearing is “me me me” Im living a good life (with some snags) & dealing with my CH like a ninja ! nothing gets in my way (but these questions..) Again -  Im talking about inflicting pain on other people!? While others are talking about “us” CH people “enjoying life to the max” (good to market).   your Jasper started his “custard”s when he was 3 ?? I have 14 Nieces & nephews (all under the age of 16) im around them ALL the time & I experience the joy my sisters have. When I ask these questions… they only come out of love & consideration

Uncle,

If I read your post correctly....How many of your family have CH?  Life is a crap shoot and nobody said there are any guarantees in life.  If your fear of having children is any pain they may have to go through then I can assure you they will and the chances are much higher they will get hit by a bus or have cancer than they are to suffer from CH.  Sorry but them's the facts.

-P.

As I posted before, I'm one of 14 kids, there are over 50 grandchildren and half a dozen great grand children. Thus far no one else has CH. Certainly something to consider but fortunately the numbers are really small. Good luck whichever direction you take.

Joe

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


I understand your worry but you are basing your position on an hypothesis.

Dont forget that treatment now is allowing many of us to have some control. I would agree with some of the other views that CH should not control your life.

I can say this easily because I have many children and grandchildren so I have the luxury of not being in your position.

You have time (in age terms) to research this and make a  more informed decision before reaching an age where it unfair to become a parent (for me that is no later than 45).

I think it is difficult to say which route is right or wrong.

In answer to you hypothetical question about sexually transmitting CH to a partner, I would not take the risk unless safe sex could guarantee no transmission.

I hope your struggle with this comes to a conclusion which gives you peace of mind.

Ellick

Nope, no one I know in the family had these.  I never even knew there was such a beast until a couple years after my first.  

If I were to go by this reasoning, then I would have probably been doomed from the beginning for a chance at a wonderful life.  If I went by this reasoning, I would have said "no" when my husband asked me to marry him.  I would also never had known the joy of having children either.  I would have been sentenced to a life of misery and loneliness because I would have never taken the risk at LIFE.

There are blessings and curses to having CH, but to lay down defeated because there is a very small chance of passing it on, will never be one of my options.  You know why?  Because I am just as worthy of a happy life as the next person.

JMO

Melissa wrote on Feb 14^th, 2009 at 6:57am:

If I were to go by this reasoning, then I would have probably been doomed from the beginning for a chance at a wonderful life.  If I went by this reasoning, I would have said "no" when my husband asked me to marry him.  I would also never had known the joy of having children either.  I would have been sentenced to a life of misery and loneliness because I would have never taken the risk at LIFE. There are blessings and curses to having CH, but to lay down defeated because there is a very small chance of passing it on, will never be one of my options.  You know why?  Because I am just as worthy of a happy life as the next person. JMO

No disrespect…. but you Obviously missed my point.
Im trying to bring up a point/ question / situation that does not involve being selfish and thinking about yourself or how to enjoy life & our selfish needs.  I know you are “worthy of a happy life just as the next person”….   “me me me ..   with all these post its turned into a philosophical discussion for me and I’m a bit surprised at some posts im seeing

uncle-cluster wrote on Feb 14^th, 2009 at 9:18am:

Melissa wrote on Feb 14th, 2009 at 6:57am: If I were to go by this reasoning, then I would have probably been doomed from the beginning for a chance at a wonderful life.  If I went by this reasoning, I would have said "no" when my husband asked me to marry him.  I would also never had known the joy of having children either.  I would have been sentenced to a life of misery and loneliness because I would have never taken the risk at LIFE. There are blessings and curses to having CH, but to lay down defeated because there is a very small chance of passing it on, will never be one of my options.  You know why?  Because I am just as worthy of a happy life as the next person. JMO No disrespect…. but you Obviously missed my point. Im trying to bring up a point/ question / situation that does not involve being selfish and thinking about yourself or how to enjoy life & our selfish needs.  I know you are “worthy of a happy life just as the next person”….   “me me me ..   with all these post its turned into a philosophical discussion for me and I’m a bit surprised at some posts im seeing

You are surprised that we all don't put our own selfish needs on the backburner just because there might be a slim chance of passing down CH's to one of our children?

Sorry, I don't mean to sound callous, but I find that unrealistic.

Let me simplify it for you, there are many on here who had clusters before their children wer born and had them anyway.  You cannot base the fear of the future on the doubts of today.

BTW, my daughter inherited a disease that *I* passed on to her, but *I* never developed the disease.  It's played hell with her life and caused all of us much anguish and worry.  Would I do it again?  You betcha, given that there are new treatments being developed every day.

uncle-cluster wrote on Feb 14^th, 2009 at 9:18am:

Melissa wrote on Feb 14th, 2009 at 6:57am: If I were to go by this reasoning, then I would have probably been doomed from the beginning for a chance at a wonderful life.  If I went by this reasoning, I would have said "no" when my husband asked me to marry him.  I would also never had known the joy of having children either.  I would have been sentenced to a life of misery and loneliness because I would have never taken the risk at LIFE. There are blessings and curses to having CH, but to lay down defeated because there is a very small chance of passing it on, will never be one of my options.  You know why?  Because I am just as worthy of a happy life as the next person. JMO No disrespect…. but you Obviously missed my point. Im trying to bring up a point/ question / situation that does not involve being selfish and thinking about yourself or how to enjoy life & our selfish needs.  I know you are “worthy of a happy life just as the next person”….   “me me me ..   with all these post its turned into a philosophical discussion for me and I’m a bit surprised at some posts im seeing

a) there are different levels of CH…  I know where I am (look up chronic you’ll see my picture)
     so when we talk about the the “what if”, its also a question of to what degree.
b) I tried to give an example on the first page of how /what would it be like if there was that really really small chance of giving CH over to your spouse… but if he caught it… wow … what a ride they would be in for  ;D
That was an example of possibly giving & catching CH by agreement  

deltadarlin wrote on Feb 14^th, 2009 at 9:27am:

Let me simplify it for you, there are many on here who had clusters before their children wer born and had them anyway.  You cannot base the fear of the future on the doubts of today. BTW, my daughter inherited a disease that *I* passed on to her, but *I* never developed the disease.  It's played hell with her life and caused all of us much anguish and worry.  Would I do it again?  You betcha, given that there are new treatments being developed every day.

fair reply ...  :-X

Ellick wrote on Feb 13^th, 2009 at 5:57pm:

'btw-thank you Ellick for your honest reply its how I feel , it strengthens my sadness… but I’m a realist. I understand your worry but you are basing your position on an hypothesis. Dont forget that treatment now is allowing many of us to have some control. I would agree with some of the other views that CH should not control your life. I can say this easily because I have many children and grandchildren so I have the luxury of not being in your position. You have time (in age terms) to research this and make a  more informed decision before reaching an age where it unfair to become a parent (for me that is no later than 45). I think it is difficult to say which route is right or wrong. In answer to you hypothetical question about sexually transmitting CH to a partner, I would not take the risk unless safe sex could guarantee no transmission. I hope your struggle with this comes to a conclusion which gives you peace of mind. Ellick

2 funny things…
a) you mean its unfair to the kid (after age 45)… my whole dissection here is about unfairness to the kid
(I know that age you have control over but you understand…)
b) you say you would not take the risk on the sexual transmitted CH (I just invented)
so you would probably take into consideration what chance you have of catching it…
if your spouse had a 1-10 % chance of giving it to you …  
maybe you would look for another girl…
note! Even if you stayed, it would be through your informed decision & agreement...not something forced on you  

and YES… I have a lot more to research & think about

The person talking most me, me, me here - is you.

You ask about the kids.. would you prefer not to have been born at all? Do you not think you have a good life in spite of CH?

I do.
My son does.

It seems to me you are trying to pin a lot of blame on CH for decisions you don't want to make anyway.

There is ALWAYS going to be a reason someone shouldn't have kids. They are too selfish, they're mean, they're abusive - hell they're too damn ugly to breed! You can say "I, I, I" or "me, me, me" all you like but simply put, when you ask for opinions all you are going to get is a personal view hon, we can't give you anything else. Someone else has already presented medicines stance in links.

I know this is scary, I know you aren't the only one scared of the potential of passing on CH. Some of  us live that, no I am disagreeing with myself.

ALL OF US LIVE WITH THAT. We've all had it "passed on" to us whether by bad genes or getting dropped on the head or eating diced carrots. Who knows what the heck it was (I blame the carrots myself)

I have it. Do I wish I wasn't here? No.
Jasper has it. Does he feel he hasn't got a full life? Hell no!

You ask any one of the supporters here, would they NOT have married their partners knowing about CH in advance. I bet you won't find one who'd say yes. They might hate seeing us suffer - but they wouldn't miss the rest of life for anything.

Keep talking, keep thinking, reading asking questions. Don't stop until you have the answers you need BUT.. be prepared to accept that it may not be CH that's stopping you at all but something else in your mindframe.

Hello, My mother had migraines but that is as far as i could trace this back. I shiver and get a cold chill down my spine everytime one of my kid's say " dad i got a headache ".


                             Challening, More assertive.. Coach bill. >:(

Oh, And by  the way.. Stop the bickering!!!



                         Challening, More assertive... Coach bill >:(

'2 funny things…
a) you mean its unfair to the kid (after age 45)… my whole dissection here is about unfairness to the kid
(I know that age you have control over but you understand…)
b) you say you would not take the risk on the sexual transmitted CH (I just invented)
so you would probably take into consideration what chance you have of catching it…
if your spouse had a 1-10 % chance of giving it to you …  
maybe you would look for another girl…

note! Even if you stayed, it would be through your informed decision & agreement...not something forced on you  '

a) Yes, I am saying exactly that. I had my youngest child when I was 45. If I live to the current predicted levels he will be 30 when I die. I also considered how fit I would need to be whilst he was going through adolescence. Outside of CH I am quite fit but CH means I am always regaining and not maintaining. It takes a perseverance that gets harder the older you get. I am 58 now.

b) If I loved someone who could transmit CH to me, I would probably stick with and try to work around it. Relationships are a risk whatever you do. There are a lot of people who for example live with a partner who has HIV.

BTW my youngest son was born prematurely at 24 weeks. He survived but has mild ataxic Cerebral Palsy. We had no way of knowing that would happen. He was in hospital for 6 months and has had huge input from us all as a family. I think the chance of that happening is much higher than getting CH.
If we had thought he would be that premature and end up disabled we would have most likely decided not to have any more children.  Since that time and due to my age I have made sure I cannot have any more.

On the other hand, he plays the piano, comes to martial arts training with me and is very popular at 'mainstream school' with teachers and friends. He has a good quality of life and adapts to his diability in a way that only children can. Simple acceptance.

I don't think the facts in this argument lie down that easily in any area and at the end of the day you have to go with your true feelings and live with the outcome.

Love, kindness and time overides much including CH.

Ellick

Uncle Cluster,

I understand why you would feel the way you do. Being deep into an episode or, in your case, chronic can often dissipate the light that exists outside of this relationship we have with our cluster headaches.

I am a child of cluster sufferer and a sufferer myself.

If you think you would be a good parent you should have children. If you think you would suck at it, then don't. It is likely that you possibly know the answer to that. There is no reason to continue debating the percentage likelihood that a child may end up with cluster headache, any more than the child may have any other range of outcomes. If you can't live with the odds, then don't.

BTW, I chose to not have children, not because of cluster headache however.

Scott

seasonalboomer wrote on Feb 16^th, 2009 at 10:59am:

Uncle Cluster, I understand why you would feel the way you do. Being deep into an episode or, in your case, chronic can often dissipate the light that exists outside of this relationship we have with our cluster headaches. I am a child of cluster sufferer and a sufferer myself. If you think you would be a good parent you should have children. If you think you would suck at it, then don't. It is likely that you possibly know the answer to that. There is no reason to continue debating the percentage likelihood that a child may end up with cluster headache, any more than the child may have any other range of outcomes. If you can't live with the odds, then don't. BTW, I chose to not have children, not because of cluster headache however. Scott

thanks for...just understanding

seasonalboomer wrote on Feb 16^th, 2009 at 10:59am:

Uncle Cluster, I understand why you would feel the way you do. Being deep into an episode or, in your case, chronic can often dissipate the light that exists outside of this relationship we have with our cluster headaches. I am a child of cluster sufferer and a sufferer myself.

could you share the level your parents have it and what level you have it?
thx  

My father was an episodic sufferer, but went through several years when he was very close to being considered chronic. He suffered quite badly and his hits were very intrusive in his life. He was treated with the whole list - some things worked better than others.

I am episodic. Used to be very predictable. Several years when they were very dark times. Not so much now, a couple cycles a year, but since arriving here a few years ago have the tools I need to keep the beast at a dull roar. Cluster headache has, for me, become something I simply deal with. I do know that I'm lucky in this respect.

seasonalboomer wrote on Feb 17^th, 2009 at 3:27pm:

My father was an episodic sufferer, but went through several years when he was very close to being considered chronic. He suffered quite badly and his hits were very intrusive in his life. He was treated with the whole list - some things worked better than others. I am episodic. Used to be very predictable. Several years when they were very dark times. Not so much now, a couple cycles a year, but since arriving here a few years ago have the tools I need to keep the beast at a dull roar. Cluster headache has, for me, become something I simply deal with. I do know that I'm lucky in this respect.

thank you Scott.
if anyone else has it in the family and can tell a bit... would be great...
thanks in advance

My dad like me has episodic CH that flip flops with severe migrianes.

He taught me that it does not have to win, that you can set goals and go for them, he backed my corner at school when I was 'always having headaches' because he knew what it was like. He showed me you can be a great parent even with b.a. pain   all he ever asked of me was to be left alone to scream with the bad heads  and bring him a coffee after. I used to hide his car keys if he had taken what we called his 'happy pills'. Headaches were only a small part of being a family for us.

He is one person I can share black humour and joke with who does understand when its horrible and gives me a hand with my kids when I have not had enough sleep to cope. He also encourages me to keep going when it gets tough and having seen how ill his heads can make him he is a good role model to do that.
I just wish he could have had the drugs that he has now back then instead of struggling so much.

My dad did not just give me CH he also gave me his intellect, his warped sense of humour and his curiosity about the world and a grasp of how good families can be.

Out of my four children two have migraine; one has 3 attacks a month and the other once every four months. I did seek genetic counselling but that had more to do with worries over a cousin with Prader Willi [low], VwB type 1 [1:4 risk] and autism [1:7 risk]. I never worried about CH as compared to the other problems it was not a real risk.

So far none are showing any signs of CH and they are now teens'.

My dad is the only person in my wider family I know who also has CH.


Being a parent is a tough job to take on. It is easier shared between two.
You cannot predict what hand you will be dealt with even with genetic counselling merely the possible risks.
You do have to deal with learning on the job but if you have the support and encouragement from a loving partner life can have more high points that low.

Great post Katie!!!

-Dennis-

Uncle-Cluster,

I had my son when i was 23. I didnt know i had CH ( thought it was just MASSIVE sinus infections).
My son is now ten and has CH.
No other immediate family members have ever had or known of CH. I can see your point of not wanting to pass it down, but i also question what if my son who suffers from these will become a doctor and found the absolute cure? what if?
-Kim

Hi,

My grandfather had cluster headache. It also started at puberty (like me) and CH disappeared at the age of 55.
My father has never got CH, except one massive attack when he was 20 (he's a MD and he says the symptoms were identical to mine). However, since then, he never suffered any longer from CH.

thank you all for your posts! keep them coming .... ( i should have opened a new posts just for this question...)  

any history... thanks :)  !!!

hello
i just found out i have ch and upon talking to my mother about this i found out that my grand mother has been having these since she was in 6th grade. i havnt had a chance to talk to her about them yet but i do know she had a surgery on her eye a few years back.

 To the best of my knowledge, no one in my family has had CH's. None on my dad or mom's side of the family.
 I had my children long before I realized I would become a head case. I hope and pray that my children never experince this, don't we all. I think it's nothing more than a genetic crap shoot, roll of the dice if you know what I mean.