Hi all, I am new here and not sure if I am even posting this in the right area.

My partner has suffered with CH since he was 19 years old, he is now 39. I have been with him for 4 and a half years and in that time thankfully he has only had a couple of mild bouts.

However, recently they have started to come back every night, always at the same time.

My question is this, we have an 11 month old baby boy and I was wondering what the chances are of him developing CH?

I didnt want to ask my partner as I dont want to worry him about it, as dealing with it himself is enough for him right now.

I am going to read all through this site now as already I am finding out new things. I want to support my partner as much as possible, which in his case, is mostly leaving him alone to get through it.

I will admit I am quite worried that our baby will develop CH's in the future.

Sorry if this has already been discussed.

Thanks

Hi there, I'm sure someone will come along behind me with some info, but yes, we do have multi-generational sufferers, although I believe it is a smaller incidence. It is heart-breaking for the parents who have children that suffer, I guess because they KNOW the pain.

LeLimey and her son Jasper are a mother/son team of sufferers, but I think there are others.

My father has it, I have it and my son is already showing occasional signs of CH.

I'm not sure of the ratio or if there have been many studies on heredity and CH but QnHeartMM is right there are a few of us here who do have it in multi-generations of family members. 

It also may depend on if there are histories of migraines or other severe headaches on your side of the family as well.  I would ask family members on both sides about this, just for future reference.

On both sides of our family mine and my ex-husbands there was/is a history of CH or Migraines.

Keep an eye on your little one, my son developed Migraines at a very young age 2 to be exact actually younger he wasn't diagnosed until he hit 2 years of age.  Now he's almost 21 and has had a few incidents that would be considered Cluster headaches.  My heart aches for him, because I know what he may be in for.

Thankyou so much for your replies.

I am quite worried about it and I really dont want to speak to my partner about it while hes fighting the demon every night at the moment, hes got enough to deal with.

I myself have never had migraines and nor have anyone on my side of the family as far as I know, certainly not up to my Grandparents at least.

I also believe that on my partners side he is the only one to have ever had CH and nobody else suffers from Migraines.

So I am guessing its just a case of wait and see.....

Thanks again  :)

You are quite welcome!

Don't let it worry you so, enjoy your little one and let him enjoy being a kid, so many of them grow up too fast these days.  Worrying is only going to give you a headache  ;)  no need for that, more than enough of those floating around.  It is good that you are aware of the condition so you know what you are looking for if your son ever starts sprouting symptoms.

Best wishes and prayers that the little one escapes the beast!

Unfortunately, both my daughter-11, and son-8 exhibit symptoms of CH's. I'm like 99% sure they both have it. I also have a brother who gets them. Whereas some might say that it isn't hereditary, I most definitely think it is. That doesn't mean he will get it, just that the possiblity is there. Only time will tell, and let's just hope for his sake things turn out in his favor. In the mean time, try not to worry about it too much as it won't change anything. Best of luck.

I believe the increased chance of passing it along to one's children is something like 1.4% greater than nothing at all. So yes, there is a bit of a hereditary link, but it is very small.

In other words, it happens, but not very often.

This subject is something that I wouldn't spend a lot emotional energy worrying about. As Brew indicated, yes it can happen - but not often.

My brother and I both have them, as did my Grandfather. My brother's youngest son (in his 20's) has had one cycle and one rouge hit so far.

Still, the odds are very slim. Go bet on the lottery for better odds.

Marc

I have 2 sons, one has CH and the other does not (so far). Genetics is a strange thing you have to have just the right combination and the chances of that are slim.

I have chronic ch.  I have identical twin boys both 24 now.  One has eposodic ch and the other one has no ha at all.  My third child gets migraines as do I also.  I heard what Brew posted before so I think he is right on with it is a very very small chance of having your child heredit ch.  I would not worry about it.  Just have comfort knowing we are hear to support you and the drs are finding out more and more info every day about this afliction.  Read up and gain knowlege so you can support your significant other and your child if need be.  Youll do great Im sure.

Unfortunately my answer to you question is absolutely it can be passed on.  There have been 10 of us in my family affected in 5 generations. 

Joni wrote on Dec 12^th, 2009 at 4:13pm:

Unfortunately my answer to you question is absolutely it can be passed on.  There have been 10 of us in my family affected in 5 generations.

But Joni, your family is the exception rather than the rule. A very unfortunate exception, but it just doesn't happen that often statistically.

So far, 7 of 10 people that have replied have multiple family occurrences.  Though that is certainly not  scientific, it is very interesting in such a short time and small number of people.  Time will tell.  I sure hope my children are not affected!

Joni wrote on Dec 13^th, 2009 at 7:27pm:

So far, 7 of 10 people that have replied have multiple family occurrences.  Though that is certainly not  scientific, it is very interesting in such a short time and small number of people.  Time will tell.  I sure hope my children are not affected!

There are over 7,000 members of this website.

Brew wrote on Dec 13^th, 2009 at 9:33pm:

Joni wrote on Dec 13th, 2009 at 7:27pm: So far, 7 of 10 people that have replied have multiple family occurrences.  Though that is certainly not  scientific, it is very interesting in such a short time and small number of people.  Time will tell.  I sure hope my children are not affected! There are over 7,000 members of this website.

You are right, Brew.  That's why I said it was a small number, yet still 7 out of the first 10 that replied which surprised me.  I would love to hear from others, not that it would be scientific, either...but I'm curious.  It is interesting, isn't it?  Wish we could take a poll.

Brew wrote on Dec 13^th, 2009 at 6:25pm:

Joni wrote on Dec 12th, 2009 at 4:13pm: Unfortunately my answer to you question is absolutely it can be passed on.  There have been 10 of us in my family affected in 5 generations.  But Joni, your family is the exception rather than the rule. A very unfortunate exception, but it just doesn't happen that often statistically.

I know!  That's what the doctors tell us...wish someone would study us!

Joni:

Quote:

You are right, Brew.  That's why I said it was a small number, yet still 7 out of the first 10 that replied which surprised me.  I would love to hear from others, not that it would be scientific, either...but I'm curious.  It is interesting, isn't it?  Wish we could take a poll.

I'm the first and only in my family.  I imagine the people who reply will be weighted towards those that think 'yes' because 'no' people have really nothing to say except 'no'.

Your family are so unlucky Joni, :(.  Really sucks.
I hope your little boy turns out to be non-clusterheady, Kaz!  Good luck and don't worry! :)

First of all - if you ask a question like you asked it - you are going to get more answers from those who do have a familial connection with CH. Those of us who do (like me) see the question and automatically want to give input. I don't want to scare anyone but it can happen. As to God's involvement, even though I have great faith, I'm copping to the idea that this kind of thing is outside of his day-to-day involvement. It just happens. My faith helps me get through. But I don't buy into divine retribution or any other concept along these lines.

So love your child. The tools available today for people to cope and live life more fully with CH are like night and day from what was widely known and available even 10 years ago. Who knows what another ten years will bring? Worry less - love more.

My grandmother had migraines, my father had clusters, I am the lucky one who hit the hereditary jackpot and gets BOTH!! Yay me! My brother gets neither, poor him missing out on all this FUN!!

Interestingly enough, my father, who suffered from clusters his entire adult life had to have his teeth pulled and get dentures back in the mid 90's due to gum disease (also apparently genetic- boy I hope I got that gene too), anyhoo, since he got the dentures he has not had a single attack. over 15 years PF. I don't know what the connection is but there ya go.

Joni - Brew's son (who is also MY son) does not have CH.  Doesn't mean he can't develop it, but as of 18, he's shown no sign.

Mosaicwench wrote on Feb 1^st, 2010 at 5:40pm:

Joni - Brew's son (who is also MY son) does not have CH.  Doesn't mean he can't develop it, but as of 18, he's shown no sign.

I sure hope he doesn't start them! 

I was 30 before I started them and until then, we all felt sure I had passed the age since most in my family started young.  I have 2 daughters, ages 23 and 26 that show no signs, but I know that it is just a game of Russian Roulette.  Of course, I tell them they probably won't get them, but I don't know that.  I also remind them that even if they do, things have come a long way in treatment and they will be fine.  One of my daughters is a pharmacist with interest and experience in neuropharmacology, so if I'm not around, she can take over.  As my mother always said to us, "The only thing I could have done was just not have children."  Haha.

I'm adopted and have no idea of my biological medical history.  My CH's began at 11 yrs old immediately following a tragic closed head injury.  I've suffered 30 yrs with episodic CH's.  I am now a proud father of my 9 yr old son and GOD FORBID he inherits this living nightmare!!!

i have 3 beautiful kids oldest of which is 8..no signs yet,,my father was adopted and no history on my mothers side so i think im the first,,the point i wanna make is if you worry about it and let it comsume you then doesnt that mean the beast has won before he even showed up?life is to short,,whether my kids get it or not we are gonna keep on living life and loving one another,,the show must go on(says the guy with toxic lithium levels:)

Tar-heel, I like your positive attitude!

The only positive spin on your kids becoming CH'ers is this: They'll have an expert around to show 'em how it's done. Anything beyond that is needless worry.

While heredity may be a factor, it also is no factor at all.  I’m the first and so far the only member of a very large family that has ever had CH. 

My children, now out of college, have thankfully not exhibited any signs of CH.

Heridity doesn't appear to guarantee the development of CH or render one imume from it.  As with so many things we experience with this disorder – while the core symptoms remain the same, effective treatments, cycles, triggers, etc., etc., seem to be all over the place.                  

Best Wishes
burnt-toast
(Tom)    

My father had it (he killed himself) and i also have it.. .03% of the CH bunch have a parent who has it

Cassandra, I am so sorry about your Dad.

Joni wrote on Feb 28^th, 2010 at 2:35pm:

Cassandra, I am so sorry about your Dad.

Me too.. he was a great guy.. i guess living with it was just too much for him.. i just pray that i can make it though it

You will!  I have made it 25 years and had a 31 career in teaching as well.  I hope you have a good doctor and treatment plan.  Read here all you can!!!

Hi to you all,
first of all, I would like to mention that i find it hard to know if i am writing to you all or just to one person.it is been a bit hard to understand how it work here,so if it goes to one person please pass it on to the other too.
I suffered from headaches since i was a child,my father had it as well without known that he had it.
I was mis-diagnosed then i was told the true, when i found out that the beast will be with me for life,I tried to commet suiside.did not have suceess.
I been unlucky most of my life, then I thought to myself I have to be a man and take the pain,I have to find the cause of this beast. Now I know the cause, Yes we pass it to children, and it is been passed on for more than 250 years.
Now I found it, and I hope that god helps me to get it out and help you all. So please hang on for me.I promise that you all will not think when it will start again.
I hope then you do not mind to have a laugh with me, as I am not a black and I am not white either.
most important ,I am not a sales man.
I do not even know who do I associate with.
All I know for now that
I am an X Chronic Cluster Headache who become free, without the Oxygen,Drugs,Herbs,injection,surgery,without pain at all.

wrote on Mar 25^th, 2010 at 2:44pm:

Hi to you all, first of all, I would like to mention that i find it hard to know if i am writing to you all or just to one person.it is been a bit hard to understand how it work here,so if it goes to one person please pass it on to the other too. I suffered from headaches since i was a child,my father had it as well without known that he had it. I was mis-diagnosed then i was told the true, when i found out that the beast will be with me for life,I tried to commet suiside.did not have suceess. I been unlucky most of my life, then I thought to myself I have to be a man and take the pain,I have to find the cause of this beast. Now I know the cause, Yes we pass it to children, and it is been passed on for more than 250 years. Now I found it, and I hope that god helps me to get it out and help you all. So please hang on for me.I promise that you all will not think when it will start again. I hope then you do not mind to have a laugh with me, as I am not a black and I am not white either. most important ,I am not a sales man. I do not even know who do I associate with. All I know for now that I am an X Chronic Cluster Headache who become free, without the Oxygen,Drugs,Herbs,injection,surgery,without pain at all.

Blow it out your backside, Ali.

LasVegas wrote on Mar 25^th, 2010 at 3:09pm:

amazing this spammer is allowed to continue posting after the ongoing bullshit spam on the other thread

You'll note that the poster's profile is now locked.

Best,

George

Hello. My husband has cluster headaches. His father still has them as well. But they are the only ones. Grandparents and great grandparents didnt have them.

I'm scared to have children, I don't want them to ever meet the beast!

Cece it is so rare to get CH's, let alone to pass them on to children.  You are more likely to pass on other hereditary medical problems.  Don't let it deny you from the greatest joy of life, children. 

Cece - I'm a ch'er and I have a child with CH.
Yes it's horrific. It's something I don't know that I'll ever really come to terms with BUT...
When I spoke to Jasper about it his answer was "Well I'm not having one now am I?" He has a great time, he is a bright sunny smiley lovely little boy who many here have met and can tell you - he's a normal little scrapper! He's eight. He's had CH 5 years. If he can take it on the chin I'll keep trying to because he is the brightest ray of sunshine in my sky.
With kids you never know what you'll get. CH isn't the worst that can happen and if someone has to have a child with CH - it's better it's someone who can advocate for them.
It's very, VERY rare though. I wouldn't let me put it off me having another child (but I'm too old for that malarkey anyhow!)
If you ever want to talk let me know. I'll happily talk with you about it
Helen

Hey LasVegas! You are right, it is rare. But I'm still scared. I'm also scared because my husband is not stable, which my goodness is totally normal when he deals with the devil each day like all of you amazing fighters!
I'm just scared and worried we are not going to be good parents because the headaches will be the main focus at times. I'm not sure how to explain. I guess we are just not ready and finding excuses. Seems like a lot of sufferers here have children and are doing just fine.
I'm sorry...it's always been a big concern!

Cece if it wasn't a concern you wouldn't be fit to be a parent anyhow! Parenting is scary as all in at the best of times - you're right to think things through. Just don't let it be too big a focus.

Our convention is in Atlanta GA this year. Maybe you could come along, meet some of us and learn - I guarantee you the most fun and life changing experience ever!!

My parental background/family history.....I love being a parent, I am a single parent with sole custody 24/7/365. 

My 9 yr old is happy, healthy and considered a normal little boy.  He is the greatest joy my life has ever experienced. 

My parents and grandparents reported no abnormalities with headaches, brain disorders, etc. 

Mine began at age 11, coincidentally within weeks of a tragic closed head injury.  I am now 41 and have been in remission for over 4 years. 

My conclusion is this is a very rare disease and even more rare to pass it on to children.  If you are both ready for children and can make the commitment, I would recommend not denying your lives of parenting due to the very slim chance of inherited CH's....."To each his own"

You are all very right, I know.
I guess sometimes when he gets the worse "devils" possible, he of course screams very loud or bangs on something. Our dog and 2 cats are so scared they come curl up against me. But our children will grow up hearing and after we explain a lot, I'm sure they'll know it's "daddy devil time".
It's scary but we will manage like clearly you all are.
Thank you for all you say, this site as changed our lives. My husband is so happy to have this site. Unfortunately, he is terrible at writing steadily each day, even getting him on the phone can be a blessing! lol
So I do this for us, I read things each day and he really loves it.

We got married in januray but have been together almost 5 years. So we might start talking babies in a few years. I still like sleeping in and spending money on us...that's so bad! lol We spoil our animals though so I know the babies will have a good life.

I'm just typing away, sorry....

Love to all :)

There are a lot worse things to worry about passing on to your children than Cluster headaches!  That never entered my mind one time.  As much as my daughters have seen me suffer from time to time, it is not more than a passing thought to them, either.  Heart problems, cancer, diabetes, MS, Autism, Bipolar disorder, etc... would be a concern, but I would still have children even then.  You can't escape everything, and CH's would be my choice over many issues to pass on.

Joni, I agree with you totally. Actually my husband and I always say we are so grateful in a way he has the CH over cancer or aids or diabetes... Besides his CH, he has no other problems and we thank GOD everyday for that. I am very healthy as well and hope to stay that way. We can not predict what our children will have, that is very true and of course I wish they will be perfectly healthy but we will take CH over any other disorders or deadly diseases, so true!!!

Good luck to you both!   :)

I have episodic CH (2 episodes so far)

My mother has migraines but no CH family history whatsoever...

Hi! ,if this could be useful,I was told by my doctor that the medical has evaluate to 15%,that genetically my children could have it, I do not have the specific medical recherche that confirm this ,
so far my boy has nothing is 12 years old
regards
Geoman
P.S If require I will meet with him on the 27th of this month I could ask him

I am the only one in my family with CH.  I have two boys, 4 and 7.  So far there are no symtoms and I pray to God everyday that he keeps them healthy.  I won't be able to watch my babies suffer with these. 

bradish wrote on Oct 17^th, 2010 at 11:29pm:

I am the only one in my family with CH.  I have two boys, 4 and 7.  So far there are no symtoms and I pray to God everyday that he keeps them healthy.  I won't be able to watch my babies suffer with these.

If they have them, you will be very supportive and helpful!!  Much more than someone that knows nothing about it.  They will be lucky to have you as a role model and confidant.  However, if you are the only one in your family, maybe they won't get them.  Think on the bright side until something happens.  :)

Thanks Joni!  I will be there for my kids no matter what they go through in life.  Love them more than life!  Just glad I found this site for some support for myself.  It seems that nobody knows what clusters are.  Its not just a headache!!!

bradish wrote on Oct 18^th, 2010 at 8:57am:

Its not just a headache!!!

You're right, it's not just a headache!!!  That's what makes it so difficult to explain to others when they know the actual headache is only about 90 minutes.  Ohhhh, there is so much more!!!

bradish wrote on Oct 18^th, 2010 at 8:57am:

It seems that nobody knows what clusters are.  Its not just a headache!!!

Print the following pdf and give them out to people who don't have much of an idea yet.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Thank you Brew for that info.  This is going to be helpful in so many ways!  I get so tired of explaining and then to hear "I know your pain, I have migranes."  Ha, I wish it could just be migranes! 

Funny topic....

I called my father a couple days ago and told him about my daignosis.  He almost started to cry.  He told me that he gets them too and is so very sorry knowing that I suffer them too. It is the first time that I can remember that my father displayed real compassion for me.  It was a touching moment really... 

So while these things suck and to answer your question, obviously, they are able to be passed on, the have brought my father and I closer...  For what it's worth...

Don't know if this message is still active, but just wanted to say that I would not worry I think the chance of your son inheriting it are quite slim (probably negligible)--from what I have read you would need to have some genetic marker coming from both sides of the family and the mode of inheritance would be complicated even going from there.
Take me for instance--got 4 siblings, dozens of cousins, nobody in family has CH, and nobody in my immediate family (parents, siblings, grandparents) even gets migraines.  Well, anyway, in other words my parents probably should have been worried about me when I was a baby, but they had no way of knowing.  Because I think the way it is passed down genetically is probably extremely complicated.  Don't spend your time worrying--odds are he won't get them.

Thanks for this thread. I am glad to know I'm not the only one concerned but am glad to see it is not a common issue. My first child is due in a couple months and I have thought about him/her often during this episode. I will rest easy and deal with what is dealt. Thanks again all.

dault

My husbands father has cluster headaches and my husband also suffers from them. I have read on many sites that they think that it is genetic and more men suffer from them than women. I am very scared for my children because my husband and I have three boys and one girl. I pray that my children wont ever have to suffer from these monsters like my husband has to.

There is only a very, very slight chance of passing them on to the next generation. Something like a 1.4% greater chance than completely random.

My 12 yr old son has had problems with ha's since he was 8. His only last for a full 24 hours. Too early to tell if it is CH or migraine.
I'm not ruling anything in..or out for that matter. No clue if it is hereditary or not.
I don't worry much about it at his age, and it being such a small time period of his suffering.
From personal experience, mine has gotten longer lasting through many years so I'm not even considering him for a neuro appt. anytime in the near future.
I have no family members with CH whatsoever so, I'm not seeing a hereditary link on my end.

(Not saying it's impossible but the statistics are indeed, minimal.)

-Kimmie