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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> I worry about my daughters having CH.
        
(Message started by: JohnMcCloy on Nov 7^th, 2007, 1:26am)

Title: I worry about my daughters having CH.
Post by JohnMcCloy on Nov 7^th, 2007, 1:26am

I inherited them from my Mother who did not develop them until she was in her 40's but I got my first headaches @ 10 years old and have not looked back since.Now @ 26 I have 2 young daughters who are going to be 7 & 8 and are a few years away from where they could begin having them & I could not bare to have them go through what I go through however I know there is a genetic link between CH.
How many of you out there have children or yourselves inherited CH?
Should I be this concerned or is it not as commonly inherited among females?

Title: Re: I worry about my daughters having CH.
Post by Bob_Johnson on Nov 7^th, 2007, 6:56am

It's not from a lack of sympathy that I write this but out of concern for your emotional wellbeing.

Worry about something which has not happened and which you cannot prevent is a source of distress for you and the children. Kids will pick-up a hovering parent who is fretting and they will then develop their own anxiety--about you and/or themselves.

As an adult, you can only be aware. You know the symptoms and so you quietly watch--and act only when you have objective cause to do so. What is the alternative? There is no predicting the emergence of CH and no immunization to prevent it. I can only encourage you to deal with this issue as you would with any infectious disease to which the kids will be exposed--deal with it IF it comes.

Loving and enjoying their lives is sufficient to fill the day....

Title: Re: I worry about my daughters having CH.
Post by George_J on Nov 7^th, 2007, 10:05am

From everything I've seen, and everything I've read here, it appears that there may be a genetic link--but it's a weak one.

There are certainly some clusterheads here who have a parent with CH, or a child with CH. However, many do not--me for one small example.

I began having CH attacks at the age of thirteen. I know of no other person in my genetic line who had or has CH, and my daughter (who is seventeen) has shown no sign of CH or migraines. Believe me--I've watched for it.

So yes. It is possible that your kids could have CH, but it is at least equally possible that they will not.

Try not to be too concerned about it. Easy to say, I know, but life goes on, eh? If you do end up with a child who has CH, they can learn to live with them and learn to prosper--just as you have.

My very best wishes,

George

Title: Re: I worry about my daughters having CH.
Post by Guiseppi on Nov 7^th, 2007, 10:36am

I shared your concerns too. My girls are 24 and 21 now, they don't even get migrains. Bob's right, there's plenty of other stuff to worry about when raising kids.......if they do develop it, think of how much easier a road they'll have since you've already paved it. ;)

Guiseppi

Title: Re: I worry about my daughters having CH.
Post by Wayne on Nov 7^th, 2007, 3:30pm

Hi John

Following on what George wrote, there are quite a few folk here who have either a parent or a child with CH. For all intents and purposes this is a fairly rare condition and I don't believe that many of us have even met another clusterhead apart from here, so to have two in a family must be more than coincidence, IMHO in anycase.
Having said that there are many more where there is no parental link. I have 3 kids and none of them have shown any signs yet, the oldest is 17, although I only started these when I was 35. I do know though that if one of them does start it won't take 4 or more years to be diagnosed so their path would be much easier.
Anyway, there's not much you can do about it apart from pay attention and of course you'll know if one of them developes it. So just relax and enjoy them being kids, handle shit if and when it arrives.

Cheers,

Wayne

Title: Re: I worry about my daughters having CH.
Post by JohnMcCloy on Nov 7^th, 2007, 5:41pm

Wow thanks guys I was always under the impression that CH
was quite commonly inherited.I suppose simply because my mother has them & I thought I read someplace previously that there are genetic links.
This makes me feel much better.

Title: Re: I worry about my daughters having CH.
Post by txbeck on Nov 7^th, 2007, 7:03pm

John, No one else in my large extended family has CH. Not parent, sibling, aunt, uncle, cousin. Both of my children, now in their 40's, have migraine, but neither has CH.

On the other hand, my sister in law, no genetic connection, does have CH.

Stop worrying about something that likely will never happen.

Title: Re: I worry about my daughters having CH.
Post by cash5542 on Nov 8^th, 2007, 11:27am

I am a worry wart! My daughter has CH and got it at 21 years old. I go to most of the nuerology appts looking for answers to why this started. The only answer I've been told is that she has such a heavy history of migraines on both sides of the family and this somehow has manifested into CH. She did have migraines for a few years before it began. My son is 24 and I try not to worry about him. He has never shown any signs. The advice not to worry is so important. Enjoy your girls now. What happens will happen and there is no stopping it and it sure isn't going to help to worry.

Charlotte

Title: Re: I worry about my daughters having CH.
Post by LeLimey on Nov 8^th, 2007, 5:15pm

Very good advice there John - enjoy today. Don't waste it worrying about what might never happen.

And look on the bright side - if any child HAS to have this curse, then ours are "lucky". Our kids are the lucky ones in that we know, understand and can advocate for them. Its not much of a consolation but it is better than nothing

Helen

Title: Re: I worry about my daughters having CH.
Post by ski2k on Nov 9^th, 2007, 10:44am

If it helps at all.... I'm the youngest of 11, and have somewhere in the area of 50 neices and nephews, and 15 or so great neices and nephews. I'm the ONLY one with cluster headaches, although 3 of my 5 sisters get migraines (one of which was caused by an auto accident). My daughter, who just turned 10, gets an occasional headache, but it doesn't look anything like CH, and one ibuprofen takes care of it.
If I recall right, there may be a genetic link, but I feel it's a very small chance you could pass it on. With a family as large as mine, there should be someone else with it, if the chances were only 50-50 or so.
Like others have stated... If it does happen, just think of how much easier they will have it. You KNOW about CH, and can help put them on the correct treatments for it.

Just my two cents. Hope this helps!

Adam

Title: Re: I worry about my daughters having CH.
Post by DennisM1045 on Nov 10^th, 2007, 8:45am

Hi John,

You are far from alone in this fear. I am a father of 10 and every time one of my kids get a HA I look close at the symptoms. My father also suffered from CH.

Like the good folks pointed out above, don't get obsessed by what you can't control. Find some peace in the fact that you will recognise the signs if they come and you will keep them from going undiagnosed. It was 12 years for me. It won't be two weeks if one of my kids turns up as unlucky as I.

I found an article on Zomig nasal spray that had a stat related to inheritance and CH.

Quote:

<snip> said Rapoport, now a clinical professor of neurology at the University of California, Los Angeles, David Geffen School of Medicine. About 14 percent of people with cluster headaches have an inherited form that runs in families, he added.

Here is a link to the original article: http://www.nlm.nih.gov/medlineplus/news/fullstory_54226.html

-Dennis-

Title: Re: I worry about my daughters having CH.
Post by Mosaicwench on Nov 11^th, 2007, 2:23pm

on 11/10/07 at 08:45:01, DennisM1045 wrote:

I am a father of 10 and every time one of my kids get a HA I look close at the symptoms. -Dennis-

That's about all I do with my almost 16 year old, too. Brew was diagnosed while I was pregnant and I've never actively worried about the inherited factor in Jrbrew.

I watched Jrbrew get a particularly bad headache while we were coming home from RichCon in July. I watch him grab his forehead in the "three-fingered-forehead-grab" and I thought "here we go with cluster headaches."

Gave him O2 and watched him but it didn't help a bit. Put an ice pack on his neck and had him lay down (which I do for my migraines) and it was gone in minutes. I think I was just very sensitized to the symptoms of an impending hit because I had just spent 4 days with clusterheads.

I'd quite frankly rather watch for CH symptoms than symptoms of MD, MS, cystic fibrosis, or a host of other ghastly diseases.

Title: Re: I worry about my daughters having CH.
Post by Ree on Nov 12^th, 2007, 8:44pm

My husband who suffers Great Uncle (brother of his Grandmother on his mothers side) had them and now his Great nephew has them. (His Neices young son) So in our family it seems to skip a generation. We are hoping that our daughter Breezy doesnt have them she suffered from some Migraine when she was 9 or 10 but those seem to have dissappeared when she no longer had the witch of a teacher that she had that year.
Little Johnny who suffers from them has had them since he was 4-5 years old. My husband didnt get them til he was in his 20's.
Funny thing is the older generation that remembers his Great Uncle having clusters... they thought he used the attacks as excuses to get out of doing stuff. It seemed as if no one believed him... its kind of sad. Some of the family members remembering him hitting his head against the wall.

As far as your daughters go... its best not to worry til it happens. As my son Sean always says to me "Mom its not time to worry yet.
Good luck
Ree

Title: Re: I worry about my daughters having CH.
Post by sldrswyfe on Nov 14^th, 2007, 8:08am

This is not in any way meant as disrespectful or argumentative...at first I felt frustrated when I read your response Pat...saying at least it's not MS, etc. I've waited a few days to respond.

Living with CH, and being chronic, having absolutely no support-make no mistake about this... my life has been taken away from me...in so many ways I have never opened up publicly about.

I have had Dr.s say statements similiar to what you did..."It's not terminal", "Hey, at least it's not MS", etc...you cannot imagine how frustrating, upsetting and how hopeless it has made me feel and how many times I have walked out of an office crying.

Those kinds of statements hurt, make one feel silly for even bringing up that we have CH...and maybe because it's NOT MS...we should just shut our mouths and be grateful.

CH, in my opinion, definately ranks in the "ghastly".

I can understand worrying it may affect your child. I have wondered if Brianna will get CH's too...wondered, not obsessed, but definately wondered...I couldn't bear to watch my daugther go through a hit, and pray I never have to. She has even asked me if she will get CH's...and I have told her it "very highly unlikely".

I strongly doubt she will, but if she does, as others have mentioned, at least I know how to help her.

I believe it is natural, and ok, to wonder. Not to live in fear though. We are all very, very strong...and when you are put in a situation that you may have at one time said, "I could NEVER do that", you WILL, if you have to.

Title: Re: I worry about my daughters having CH.
Post by kcopelin on Nov 15^th, 2007, 1:09am

Seems to be conflicting evidence re: genetic link. I remember when my daughter (now 17) was born, I prayed and worried that she would inherit this insanity. So far-headaches during her period is it...neither of my sons have headaches either, and I still pray nightly that none of them ever develop CH.

Worry robs today of joy. Can we change anything with worry? Can we add even one moment to out lives by worrying?

PFDAN y'all
kathy

Title: Re: I worry about my daughters having CH.
Post by GrandPotentate on Nov 15^th, 2007, 11:12pm

No one I know of in my family has ever had this. In fact, this is one of the few things that my hypochondriac Mom did not have. She was a pretty hearty migraineur, however.

I've discussed with my sons (late 20's). Neither has had anything similar. Smoking and drinking seem to have some weak links as well (certainly I fit that sterotypical pattern), so I have the continued parental speeches. Give yours the speech before they have their first!

My doc seems to think that this is pretty much a random thing. Give your kids all the love you can, and let them know that you need a little time to deal with the hits when they happen. Don't worry about what isn't there.

Title: Re: I worry about my daughters having CH.
Post by cash5542 on Nov 17^th, 2007, 1:32pm

I have watched my daughter getting a hit many more times than I cared for. I have seen her in the ER full of drugs for CH that made her unable to talk. However as horrible as it is, nothing will ever be as horrible as the weekend we spent in ICU because she couldn't breath because her asthma was so bad. It's all bad but I still thank god she doesn't have CF or another terminal disease. Her friend just died this past summer after 2 lung transplants and CF. That kind of put everything in place for me including her asthma. Enjoy each day cause you don't know what is coming tomorrow!

Charlotte

Title: Re: I worry about my daughters having CH.
Post by starlight on Nov 22^nd, 2007, 7:34pm

John,

I can understand the worry but if it helps any I have 4 siblings and dozens of cousins and I am the only one with CH.