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        Cluster Headache Help and Support >> Cluster Headache Specific >> Passing CH on?
        
(Message started by: Tom K on Apr 14^th, 2006, 1:12pm)

Title: Passing CH on?
Post by Tom K on Apr 14^th, 2006, 1:12pm

Ok, I'll be the first to admit that I haven't searched, because my 'puter it too damn slow and I'm impatient. Since we have been dealing with this for a looonnnngggg time, I'm sure some of us have had kids. Well...the wife is in the "way" if you get my drift...Not through the 1st tri yet, so not trying to jinx anything yet. Anyhow, has anyone seen this CH thing of our's passed onto their children? I would feel so damn guilty if my kids got this from me. I have had no luck in finding anyone in my family that has CH, I guess I'm the lucky bastard, so could I possibly get that lucky and not pass it on?

Title: Re: Passing CH on?
Post by AfraidOfTheDark on Apr 14^th, 2006, 1:55pm

I'm curious about this too. My mother said she suffered from clusters as well. But she also claimed it was kinda a stress thing because they disappeared as soon as she left her husband. :-/ She also said she would lie in a dark room for hours and cry. Doesn't sound like clusters at all.

My uncle (mom's brother) was diagnosed as having clusters, he had some sort of nasal surgery that stopped his clusters, or whatever they were. I dunno, I should ask them. [smiley=huh.gif]

Title: Re: Passing CH on?
Post by Karla on Apr 14^th, 2006, 2:11pm

2 of my 3 kids have migraines like me. One of my identical twins gets clusters also. He is eposodic where I am chronic.

Title: Re: Passing CH on?
Post by Icey on Apr 14^th, 2006, 2:23pm

Scarey yeah . I know some of my relatives get migrain but never heard of CH in my family , i'm the only one that I know of .. Having said this my youngest son suffers terrible travel sickness and tells me he gets dizzy spells ( he's 11 ) I read somewhere that this can be one of the signs of CH appearing :-/

Title: Re: Passing CH on?
Post by Guiseppi on Apr 14^th, 2006, 5:13pm

I'm one of 14 kids, none of my siblings or anyone on either my mom's or my dad's side ever had clusters. Several sisters have moderate to severe migrains, generally cycle related.
My daughters are 20 and 22 years old and ,(knocking furiously on wood), neither child seems to have "caught" them yet!!!!

Guiseppi

Title: Re: Passing CH on?
Post by BarbaraD on Apr 14^th, 2006, 5:41pm

My grandmother, father and son have migraines but so far no clusters except me. My son shows signs, but won't go to the damn doc. I'm hoping his don't turn into CH, but so far he can still sleep them off so I think it's still migraines.

This is something we all worry about. There are some (a very few) who have clusters in families, but not that many. As far as we know they are not heritary (like migraines). That's another mystery about them.

Someday (probably when we're all dead and gone) we'll have all the answers. But until then, we can just sit back and wonder.

Hugs BD

Title: Re: Passing CH on?
Post by Tom K on Apr 14^th, 2006, 7:28pm

Thanks for the quick responses, everyone. Lets me worry about one less thing. ;)

Title: Re: Passing CH on?
Post by Jasmyn on Apr 15^th, 2006, 6:52am

Tom, yes, it is not going to help you or your wife to worry about it.

Some people here like Helen, has a son that also has CH.

My daughter has had symptoms and was diagnosed with CH a few years ago but for the past 2 years it seems more like migraines. So we are hoping that it is migraines and not CH... not that you want any child to suffer any type of illness.

My Father seems to have CH but he refuses to see a doc/neuro and believes it is his back that causes these. His answer to this is Chiropractors , although they haven't done a thing to improve his condition.

There might surely be a genetic link but so far it is not that common and there is no real evidence.

Title: Re: Passing CH on?
Post by mynm156 on Apr 15^th, 2006, 2:11pm

My mother had what my Dad calls SEVERE headaches regulary after a bouched up root canal. My Son and Daughter (different mothers) have issues with migraine however, my son started demonstrating classic CH a little over a year ago. In fact we just finished (HOPFULLY) his second season. The doctors pretty much treat him the same way as me except he take enderal everyday with his verapimil I take lopressor. He also has Butabitol for his migraine we both get Stadol for the clusters he almost never uses his. In fact the doctor and I agreed to dilute his a little. We added three cc's of saline. He is 17, 5'11'' 175lbs but still one full shot of that stuff and I am checking his breathing for the next two hours as he sleeps. Atleast this way he doesnt OD on it.

Title: Re: Passing CH on?
Post by lionsound on Apr 15^th, 2006, 5:36pm

My two oldest boys get migraines like me. They wake up a lot like me. They also smile just like me and laugh like me and are smart like me too. :D

You pass on a lot to your kids. Some you like and some you don't. The stuff you like is much stronger than the rest.

Title: Re: Passing CH on?
Post by Charlotte on Apr 18^th, 2006, 8:25pm

I have 5 kids, none with cluster. None of my siblings or half siblings or nieces, nephews, cousins, aunts or uncles have clusters. Lots of headaches but no clusters.

I had a great aunt (paternal) who may have had clusters. My mom told me about them but I never saw them. My grandmother (paternal) never claimed to have headaches but my husband thinks she had them, now that he knows what "dancing with the beast" means. He said he saw her in that state, similar to mine.

I'm also the only partially colorblind one in the famliy. In Sacramento at the meet n greet, I asked if anyone else was color blind. Out of 7 of us, 4 were.

Charlotte

Title: Re: Passing CH on?
Post by kaz101 on Apr 19^th, 2006, 3:07pm

I have an older brother who suffers from ch and my 21 year old son was diognosed with severe migrane from the age of 14 to 16 then they went alomost like clusters. Im not sure if im an episodic or chronic I had the 15 years ago and they come back last august only a few between august and december since when they have become almost constent im confused !

Title: Re: Passing CH on?
Post by Ming on Apr 19^th, 2006, 5:55pm

My father had clusters almost identical to my own. My maternal grandmother had migraines.

Title: Re: Passing CH on?
Post by Bob P on Apr 21^st, 2006, 11:44am

http://www.ouch-us.org/cgi-bin/survey/gene_survey.cgi?survey_name=gene

Title: Re: Passing CH on?
Post by Gena on Apr 21^st, 2006, 12:04pm

I had a doctor tell me that there is a genetic marker for CH. Now does this mean that you will pass it on? It depens, I am not an expert on genetics but your child gets hafe your genetics and hafe your wifes and they have to combine just right in order for your child to end up with CH. You and your wife could have 20 kids they could all have ch, none could have ch or just 1. it is all in how the jeans combine.

Gena 8)

Title: Re: Passing CH on?
Post by floridian on Apr 21^st, 2006, 1:46pm

The genetic component is relatively weak compared to cystic fibrosis, sickle cell, or MD. There is an increased risk, but an overwhelming majority of kids of clusterheads do not end up with cluster headaches.

http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Genetics

Title: Re: Passing CH on?
Post by ArCane on Apr 21^st, 2006, 2:19pm

My grandfather has CH, my great aunt has em, my aunt has em, my father has em, and I have em. Probably goes further back then that but no one knows. Looking at my relatives I would say roughly 66% of my offspring will have CH (when I actually have them). Ive talked to my father several times about this and how I wouldnt wish them on my worse enemy let alone my children. When we get on this subject he asks me if I would rather have not been born. Of course my answer is no. Dont let CH scare you. If your child doesnt get them, great, but if they do they will get through it, just like you. Life has its shares of ups and downs. Its all part of the game. One possitive is that you have CH and you can support your child and know what they are going through. I cant tell you how many times my father has helped me out and put things into perspective. Its great to have a supporter so close to you and so knowledgable about the pain. I wish you the best with your new arrival.

Best Wishes,
Allen

Title: Re: Passing CH on?
Post by boybath on Apr 21^st, 2006, 3:13pm

Dads got it only found out what it was when I go diagnosed. Im the only one of 4 sons with it but time will tell how my 3 sons go as they are all 3 or under.... so yes I think we do

Title: Re: Passing CH on?
Post by Jbrigham77 on Apr 21^st, 2006, 10:40pm

I'm not sure either. My father, mother and sister all get migraines, I had them as a teenager,(more than 10 yrs ago now) Dads went away. he was my age when he got them, but seeing me now, he thinks it might not have been just migraines(but we're talking 20 some yrs ago now) mom's went away for the most part, my sisters just started, but they think her's are Hemaphlegic migraines(I'm scared of them), maternal g-mother has optic migraines, but she had had eye surgeries and has other health problems. But so far, I am the only one.
Odd thing is in my family, My mom, sister and I tend to have the same health problems, and my sister and I have the same allergies to medication. And no one in my family is "text book" anything, the normal methods just don't work for us, I had a HA from my 1st Trex injections early thursday morning, until a lil while ago.
PFN to everyone.

Title: Re: Passing CH on?
Post by Patrick_A on Apr 30^th, 2006, 10:52pm

My Dad was diagnosed with CH's. His started fading away at the age of 44, Mine started coming on at about that same time. Ironic that his were leaving as mine were coming on. But whats even more eeeerie, I am 46 now and haven't had a CH since 8-2003. I am hoping my cycles are over.

Got my fingers crossed, Patrick :)

Title: Re: Passing CH on?
Post by LeLimey on May 1^st, 2006, 5:43am

There is a big gene research project going on here in Leicester University.. apparently they have isolated gene's/markers etc for CH but I haven't heard an update for a while. The thinking from there is that it IS hereditary and my son and I have both given blood samples for it.
Helen

Title: Re: Passing CH on?
Post by BlueMeanie on May 3^rd, 2006, 9:41pm

My son is turning 23 this year and so far so good. NO CH. There are 8 kids in my family and lucky me... I'm the only one. At the Nashville convention the speaker said that people with parents of Clusterheads do have a greater chance of getting CH's. I think he said it was 1:11 greater chance than a normal person which is still very slim concidering it's 0.04 % in the first place.

Title: Re: Passing CH on?
Post by Katherinecm on May 15^th, 2006, 12:00pm

My dad was never formally diagnosed but I am certain he had Chronic CH. I remember as a child him having HA many times during the day & night. He popped Goody's powders (powdered tylenol, aspirin, caffeine) constantly. He refused to see doctors about it by the time I was old enough to ask about it- he blamed it on the steel plate in his head from Vietnam.

What convinced me it was CH is that after he died I found some letters my mom wrote detailing his pain as focused in his left eye, with details about how severe they were. He apparently got all sorts of allergy shots, eyeglasses, and contact lenses hoping to cure the eye pain. His pain was on the same side as his injury.

Neither of my siblings has CH so far. The common denominator between my father & me is that we'd both had head/brain injuries on the same side as our pain.

I can tell you that if I decide to have children, they will be avoiding contact sports. I read some book called "Change Your Brain, Change Your Life: The Breakthrough Program for Conquering Anxiety, Depression, Obsessiveness, Anger, and Impulsiveness" by Daniel G Amen (a neurologist) shortly after I was diagnosed that discussed how brain injuries compound each other. IE: the fever induced seizures I had as a toddler, falling on my head in gymnastics, every time I got a gooseegg from my various childhood tomboy activities, heading the ball in soccer, and finally the car accident I was in where I was knocked unconscious all compounded each other. This neuro's policy for his own kids was NO CONTACT SPORTS to avoid brain injury. He also avoided giving them drugs entirely.

It didn't help me with CH, but I can't say I thouroughly gave his reccomendations a try, either. I was on prescription drugs and I didn't try every natural remedy he suggested... To be honest I was burnt out on alternative treatments at the time and only cared about the brain injury info...

Katy

Title: Re: Passing CH on?
Post by seasonalboomer on May 15^th, 2006, 12:14pm

on 05/15/06 at 12:00:12, Katherinecm wrote:

I can tell you that if I decide to have children, they will be avoiding contact sports. I read some book called "Change Your Brain, Change Your Life: The Breakthrough Program for Conquering Anxiety, Depression, Obsessiveness, Anger, and Impulsiveness" by Daniel G Amen (a neurologist) shortly after I was diagnosed that discussed how brain injuries compound each other. IE: the fever induced seizures I had as a toddler, falling on my head in gymnastics, every time I got a gooseegg from my various childhood tomboy activities, heading the ball in soccer, and finally the car accident I was in where I was knocked unconscious all compounded each other. This neuro's policy for his own kids was NO CONTACT SPORTS to avoid brain injury. He also avoided giving them drugs entirely. time and only cared about the brain injury info...

Katy

I wouldn't feed them either -- they could get poisoned from either chemicals in the food from pesticides or germs from the preparation in the ktichen
And I'll never take them in the car -- they could be killed in an accident
Nor, would I let them ride a bike -- more accidents than just about anything else.
Skateboards, nope.
Swingsets, nope.

What a fun childhood.....

Scott

Title: Re: Passing CH on?
Post by Katherinecm on May 15^th, 2006, 1:03pm

Now that's not nice. There are plenty of non-contact sports. Track, Tennis, Baseball, Basketball, and more.

I didn't say I was going to be a completely overprotective loon, just that I wouldn't want them to risk the brain injuries that come from contact sports.

If you were chronic, and you were certain your dad was, and the link (besides genetics) was both several head injuries, you might feel the same way.

To each his own.

Title: Re: Passing CH on?
Post by LeLimey on May 15^th, 2006, 2:09pm

Katherine, I have chronic ch and a four year old who has just completed his second cycle. He isn't old enough for contact sports and contrary to popular belief I haven't bounced him on his head since the day he was born! ;)
What will be.. will be. When the day comes that you have a family just remember, quality of life is everything and nothing beat's a happy childhood. I'm not saying don't take precautions.. just don't sweat it okay? Don't let CH take your joy in being a parent as well as everything else it has taken, and don't let it take your childs happiness when there are no guarantee's he/she will ever even have it. Jasper is one of three - my other two are fine (so far) - and going back, I wouldn't change a single one of my happy memories of childhood pranks either
Hope that helps
Helen

Title: Re: Passing CH on?
Post by seasonalboomer on May 15^th, 2006, 2:49pm

on 05/15/06 at 13:03:07, Katherinecm wrote:

I am episodic AND my Dad was epsidoci with a several year period of being chronic. I understand your fears. My point is that fears aside, what Helen says is right on. Whatever will be will be. I've never seen anyone tie contact sports or bumped heads to CH. Fears will not set you free. Didn't mean to be mean, but I always hate to hear how people limit their (or their children's) lives because of irrational fear.

Scott

Title: Re: Passing CH on?
Post by Katherinecm on May 15^th, 2006, 3:10pm

Ok, firstly I didn't revive the topic to insult anyone's parenting styles or decisions in any way. I certainly didn't intend to say that anyone CAUSED their children to get this because they weren't protective enough. Lord knows, there is no way to protect a child from every ill that may come his/her way. Having said that, there is SOME link to brain injury as a risk factor: http://www.med-owl.com/clusterheadaches/tiki-index.php?page=Brain%20Injury

The particular book I mentioned earlier was not specific to CH, it was about all sorts of neurological and psychological problems. Things like depression or hyperactivity. The doctor who wrote it stated that they could be caused by extremely minor brain injuries. Injuries such as what would be caused by heading the ball repeatedly in soccer. He said that his rule for his own children was to stick to non-contact sports.

I'm not a doctor or scientist. I certainly didn't look up all of the studies he referenced to see if he pulled the information from them in any credible way. I have heard before that brain injuries are cumulative, however. So it seemed to me to make good common sense to limit potential risk factors to a child who probably already has the genetic potential to develop CH. Obviously limiting exposure to risk factors (head injuries, second hand smoke) is not something you can control all of the time. Accidents happen to everyone and you can't keep your kids in a bubble.

Everyone parents differently. I really don't think my social life or ability to have fun would have suffered at all if I had chosen running or swimming sports in school rather than soccer. Especially since as an adult I run marathons. Again, just an idea.

Title: Re: Passing CH on?
Post by LeLimey on May 15^th, 2006, 3:28pm

Scott.. give it up mate. Some people are determined to take offence. It's obviously "that week" again ::)
Don't you just love it when people without kids are such perfect parents?!

Title: Re: Passing CH on
Post by seasonalboomer on May 15^th, 2006, 3:35pm

on 05/15/06 at 15:10:52, Katherinecm wrote:

Especially since as an adult I run marathons. Again, just an idea.

All I'm saying is that fears about "what could be's" will only serve to narrow your world (and that of your future child). If CH has done anything for me it is to say that life might be f'ed up, but when I can I want to enjoy it all the way. Marathon running is a GREAT example. I know a lot of people who won't consider running because they've seen studies on what it can do to their knees -- without having so much as run a 5K. I've run 9 marathons myself and believe that the experience and spiritual connection involved with running is worth the risk.

No offense, really. Just contributing to the conversation.

Scott

Title: Re: Passing CH on?
Post by pattik on May 15^th, 2006, 3:48pm

My daughter has had some migraine problems, but so far-so good on the CH issue. She is beginning to see what I have to deal with, and I'm hoping she will be open with me about any changes to her headaches.

on 05/15/06 at 15:10:52, Katherinecm wrote:

The particular book I mentioned earlier was not specific to CH,

I'm not a doctor or scientist. I certainly didn't look up all of the studies he referenced to see if he pulled the information from them in any credible way.

As someone who is a parent, and who has had a few bumps and injuries, and has run numerous 10K races and has the knee injuries to show for it, I still would never discourage my daughter from being a risk-taker. I also try to check out the legitimacy of the claims made in books before I start recommending them to impressionable sufferers. That's just my two cents.

Title: Re: Passing CH on?
Post by Katherinecm on May 15^th, 2006, 4:14pm

I'll keep that in mind in the future. Listen, I was just throwing out my take on the situation, not trying to start some sort of argument. I was joining in the conversation. Why does everything seem to fall into an argument whenever someone has a disagreement here? I thought the purpose of this was to be supportive of each other and share information we found to be informative or thought provoking in some way???

Am I wrong about the purpose of this board? I haven't intentionally insulted anyone. When I realized I had unintentionally offended someone I apologized. I really don't have a clue how to further gain anyone's respect here.

Since almost nothing regarding CH is "scientifically" proven given how little studies there have been, all we have to rely on is our own experience and common sense. I and my father both have had major brain injuries. His was from a helicopter crash, it cracked open the left side of his skull. His HA were always on the left side and started shortly after the crash. He also had many minor head injuries as a child.

I was in a car crash, where the right side of my head was injured. All of my HA's have been on the right side, starting approximately one year after the accident. I had numerous smaller athletic related injuries and even some fever-induced seizures as a child.

Since brain injuries are accumulative and they are a risk factor (that information did not come from afforementioned book), it seems reasonable to limit risk factors, IMHO. There are certainly ways of doing this without limiting life. If you feel otherwise, good for you!

I've had two knee surgeries myself. They were the result of soccer and rugby though, not running.

Title: Re: Passing CH on?
Post by seasonalboomer on May 15^th, 2006, 4:24pm

on 05/15/06 at 16:14:14, Katherinecm wrote:

Well easy there Katherine. That's all any of us are doing. If you take offense to someone disagreeing with you should maybe just stick to writing a journal. But, this an ACTIVE community of people who participate in discussions. And, as a result, not everyone will agree with you always. Be prepared to defend a point or an idea -- it's what we do and we don't take offense, but if you're going to state that you think it's a good idea for your child to never be able to participate in any form of contact sport because you're afraid they might get CH, you're going to have many people say, "huh?" That's it. Nothing personal -- just a big "huh?"

All sufferers are welcome and invited to participate in the conversation. But, if you're going to make a point, be prepared to defend it. Would you prefer that everyone just say, "wow Katherine, you might be right i'm gonna take my kids out of ice hockey, starting today."? Or would you rather have a variety of input, some of it maybe disagreeing with you?

No harm intended, just trying to understand the community's role sometime's also.

Scott

Title: Re: Passing CH on?
Post by Katherinecm on May 15^th, 2006, 4:57pm

Thanks Scott,

It's not that I'm trying to take things personally. It's when people insult or dissmiss me personally rather than having a different opinion that I get frustrated.

Of course I would hope that no one would take a child out of a sport that they loved when they have no clue who I am. I mean, I could be the reincarnation of that guy you keep kicking off the board! (I'm not). The point is, there are all kinds of crazy ideas out there, including ones from your doctor. I hope that people here have a little more discernment than to just blindly following any idea they see on a messageboard or on the internet without doing their own research. I listed the title of the book so others could pick it up at their public library if they were so inclined. I think I've read almost everything my library has on neurology and the brain and that is one of the few ideas that I found interesting.

It's entirely possible that it's a coincidence that I'm the one who had a similar head injury as my father and I'm the sibling who ended up with headaches like his. Possible, but I think not likely.

If a child already loved something like hockey (at least it has helmets!) of course I would probably let them stay in it. But if they were trying to choose between winter sports- say hockey and basketball, I'd try to guide them to BB, to reduce the risk. Obviously guiding children to prefer some sports over others is MUCH easier when they are younger. It's easy for me to say that I will have that rule when they were very young. And obviously even if you choose a "safer" sport you could still get smacked in the head, or worse, have some sort of car accident on the way to practice. There's no way to protect them from everything.

If they are old enough (12+) you could probably discuss the risks together and let them make their own decision. I know that if I had been aware of the possibility of limiting the chances of getting the HA that my dad had in high school, I would have opted for different sports. But then I wasn't that attached to which sport I played, I just wanted to make more friends after school. I'm sure certain kids, who are really gifted at sports and love them do not feel the same way as I did. In that case they may need to make a different decision. There are no simple answers.

Katy

Title: Re: Passing CH on?
Post by Tom K on May 15^th, 2006, 10:48pm

on 05/15/06 at 16:14:14, Katherinecm wrote:

Don't worry about it. Since I started the thread, I was looking for info, people provided and I did some good reading. Just remember that with the freedom of speach, comes the freedom to offend. If someone is offended, you can't help that, they have the right not to listen. Don't worry about gaining respect, and don't give up on the boards. After a while you will be fitting in with the group. Remember, and I have to say that sometimes I don't remember this either, there is someone in cycle every day of the year. Being episodic, I tend to forget that there are others with this and they could be in cycle when I'm not. The chronics are always in cycle, so they are always hurting. I know from my wife, that I'm a complete bastard when I'm in cycle and usually don't realize it. It gets worse when I'm about to get hit. Additionally, this is a pretty good bunch of people but mostly we are cynics. Some people try at humor, but it falls flat, myself included. Others think they bring the funny with every post...Don't let a few people spoil the experience you have here. You will grow a tough skin and find that everyone here is a great ally against this thing that trys to take over our lives in small, painful bits. Don't let it get to you! Thanks for your info. One thing I really found interesting was the fever seisures. I just found out from my mother that I had them until I was about 3. Never knew that before and funny to find your post about them shortly after she told me...

Title: Re: Passing CH on?
Post by Beastfodder on May 18^th, 2006, 7:34am

Father/son link for me.

Least my little boy will be armed to deal with it - but he's probably got about 30 years to go. Might even coincide with OUCH UK taking a grown up attitude and enlightened attitude to alternative therapies!

Title: Re: Passing CH on?
Post by Redd715 on May 18^th, 2006, 9:21am

Both my Grandmother and Great Grandmother on my Mom's side, according to family accounts, had CH. The stories Mom would relay to me about Gramma Jenny, her mother, I know now as her being episodic. HER mother I believe was also episodic by my aunt Janet's tales. I'm chronic going on 23 years, my ex husband first started in with CH about 6 years after we divorced. He had a history of sever headaches as a kid, would always come down with one on the bus ride home from school.

He and I have two children. Meg and Dyl both have had rouge migraines in the past. Meg only one on an Easter Sunday at 4 years old, and Dyl would get them from getting overheated in the summer while playing.

Not sure if CH will pass down to them but I certainly hope to the powers that be, NOT! However I also am aware that their risk is higher than the average child of a Chead since BOTH their parents have this blasted curse. But if either of them should, they will be better informed and have a Mom who can advocate for them for a correct Dx and they won't go years suffering blind as I did.

Just my 2 cents.

Pegg