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        New Message Board Archives >> Jan-Mar 2004 >> genetics and ch
        
(Message started by: john123 on Mar 25^th, 2004, 9:13pm)

Title: genetics and ch
Post by john123 on Mar 25^th, 2004, 9:13pm

I just thought of something I think would interest many of u who wonder/hypothesis about the causes of ch.

I am an identical twin, meaning I have a twin brother with the same hereditary genetic code as I do, same eyes, hair, skin, and general looks as me, and my brother has never gotten a ch in his life. I started getting them 16-17 years ago.

Just thought I would throw that out there for those interested.

Title: Re: genetics and ch
Post by pubgirl on Mar 25^th, 2004, 9:17pm

Wow John!

The people doing the genetics research on CH here would love to get their hands on samples of your and your brother's blood as well as any other siblings (it's being conducted now by Professor Trembath at the University of Leicester, he and his team took samples from hundreds of Ch sufferers and their non-suffering family members)

You probably don't know this but all the main CH experts worldwide are quoting that of 5 sets of identical twins studied, where one has CH, both do!
They are using this as their first basis for believing CH is down to a rogue gene or genes.

Don't mean to worry you or your brother though, they do say that 'other factors' combine with the genetic predisposition to cause the condition to manifest.

Wendy

Title: Re: genetics and ch
Post by john123 on Mar 25^th, 2004, 9:21pm

I am not worried for him at all, it has been 15 years. He has seen me get them and is very aware of what they are, and he would have told me right away if he ever got one.

Title: Re: genetics and ch
Post by pubgirl on Mar 25^th, 2004, 9:23pm

At the moment though, in terms of published CH research, you and your brother are utterly unique in the whole world!

How amazing is that!

W

Title: Re: genetics and ch
Post by pubgirl on Mar 25^th, 2004, 9:26pm

if you are interested, below is part of the report of our Ch conference last year

"Next to take the platform was Professor Richard Trembath, a Geneticist from the University of Leicester who is conducting genetic research in CH. Professor Trembath took us through an easily understood explanation of DNA and showed examples of some CH links that have been found in one European family. Interestingly in one research programme, five sets of identical twins were surveyed and in all five sets where one twin developed CH, the other did at the same time or shortly afterwards. He went on to talk about the Human Genome Project and how it will identify the exact sequence and function of our DNA and will tell us much about what happens when things go wrong in our genetic makeup.

Professor Trembath needs sufferers who were willing to give blood samples - and, if their parents are still alive, to take samples from them also to give a fuller picture of each sufferer's genetic makeup. The purpose of the genetic research is to give a better understanding of what causes CH. Any Cluster Sufferer not at the Conference but who wishes to take part in this genetic research can make contact direct with Professor Trembath by emailing him on (email removed just in case and messaged to you) or writing to him at: Department of Genetics, Adrian Building, University of Leicester, University Road, Leicester LE1 7RH. If you also have a parent(s) willing to supply blood samples for this research, that would be highly appreciated - and he is particularly keen to hear from cluster sufferers who have children, siblings and/or parents"

Title: Re: genetics and ch
Post by john123 on Mar 25^th, 2004, 9:30pm

I wonder if I could get a free trip to the UK out of it. It would make a nice little vacation. :)

Title: Re: genetics and ch
Post by pubgirl on Mar 25^th, 2004, 9:37pm

Hey try it!
why not email him?

You could be SO significant to the research that it could happen. the research is being funded somehow, so there may be some money!

Have a suspicion though that you can just send blood samples :(

Wendy

Title: Re: genetics and ch
Post by john123 on Mar 25^th, 2004, 10:13pm

To be honest, I am starting to feel a little nervous about even telling my brother it is rare for twins with ch for both not to have it. I personally do not think it is genetic, despite five sets of twins (a tiny number when doing any kind of statistical analysis). I will email this fellow to see if I can help, but I don't think I am going to bother my brother with it. The very inkling that it would cause him even one ch, I would do just about anything to prevent that.

Title: Re: genetics and ch
Post by Pegase on Mar 25^th, 2004, 10:32pm

on 03/25/04 at 21:13:35, john123 wrote:

Exact same for me... Im an identical twin and my brother dont hace CH... He has stomach problem though...

Fun to see Im not alone... eventhough i never been really alone;-)

Pegase

Title: Re: genetics and ch
Post by john123 on Mar 25^th, 2004, 10:41pm

woo hoo! there we go!

thanks man, I feel great to hear that and to know you.

Title: Re: genetics and ch
Post by Pegase on Mar 25^th, 2004, 10:47pm

So now you got an other kind of identical twins... a brother cluster... lol

Title: Re: genetics and ch
Post by pubgirl on Mar 26^th, 2004, 5:57am

Can I ask a personal question of you both?
(you can pm the answer if you like)

Do your CH free brothers have any really significant historical health or lifestyle differences to you e.g. smoking, drinking, illnesses, injuries.

This is fascinating, sorry guys!

Wendy

P.S. the 5 sets of twins wasn't huge number anyway, but it was 100%. Now there are 2 of you contradicting this (and there now looks like there must be more??) the 5 look very much less significant.

Title: Re: genetics and ch
Post by Karla on Mar 26^th, 2004, 8:49am

I have identical twin boys also. One has migraines and clusters and the other one does not.

Title: Re: genetics and ch
Post by Pegase on Mar 26^th, 2004, 9:03am

OK Wendy... I"ll try to find that answer... just give me a little time to get in touch with my brother and mom and i'll get back to you on this board... For sure... there is some difference (I smoke and he dont... but he used to) and i'll investigate...

Pegase

John and Karla should too...

Title: Re: genetics and ch
Post by john123 on Mar 26^th, 2004, 10:29am

Quote:

you and your brother are utterly unique in the whole world!

So much for my utter uniqueness, so goes the story of my life ;)

I will send you some info Wendy.

Title: Re: genetics and ch
Post by SFChris on Mar 26^th, 2004, 11:47am

Something I posted about here years ago...

My mother was an identical twin. She and her sister each had seven children. I am child number six of seven. My cousin Joe, who is my aunt's number six child also has what his doctor calls cluster headaches. We are the only two in the whole family that suffers from any type of head pain. I have sometimes questioned my cousin's diagnosis ONLY because he rarely has a cycle, and it is not nearly as intense (jealous you ask, you bet). But it is similar to mine. Weird, huh?
Ironically, we are the only two family members that live on the West Coast/Bay Area.

Chris

Title: Re: genetics and ch
Post by Lissa on Mar 26^th, 2004, 2:59pm

This is really interesting because I've always heard that cluster headaches weren't genetic. Hm.

Title: Re: genetics and ch
Post by Pegase on Mar 26^th, 2004, 7:45pm

Hi Wendy,

Here is the difference between me and my twin bro...

- I had fever scarlet and my brother didnt
- I had a viral meningoencephalistis and he didnt
- I have been smoking since im 16 (now 34) and he stopped twice: between 19-23 and since he's 27 he stopped completly. For myself im still smoking...
- Lifestyle is similar... he maybe is a bit more stressfull than me... I dont drink... but he's drinking a bit... and we both smoke pot... doh (just want to me honest)
- He's having Irritable Bowel Syndrome (stomach problems) and I dont...

That's about it...

Pegase

Title: Re: genetics and ch
Post by pubgirl on Mar 26^th, 2004, 7:48pm

Cheers for doing this.
Wish I knew what it meant but I can't help believing that it is important.
Identical twin studies are so crucial to medical research.

Hope you don't mind, but I will log all this (no names of course) in case it is useful to the Queens Square research team (Goadsby's gang)

Wendy

Title: Re: genetics and ch
Post by Pegase on Mar 26^th, 2004, 7:57pm

Really dont mind... if you need more dont hesitate it will be a pleasure;-)

The two first name on the list are related to the brain i think...

Pegase

Title: Re: genetics and ch
Post by pubgirl on Mar 26^th, 2004, 8:27pm

Yup Pegase

They (brain injuries and diseases) have come up more than once when people try to make sense of this horrible condition.

But truthfully, almost every possible connection has probably come up more than once!

One day the groping in the dark will bear fruit, just hope it is in my lifetime, or at least my son's if he gets it

It can't do any harm letting the CH research team and the Ch genetics research team know about this. And it may help.

Wendy

Title: Re: genetics and ch
Post by Pegase on Mar 26^th, 2004, 8:53pm

An other interesting thing though... I asked my mother if they were cases of CH in our family and at first she said no... but after given her the full explanations on CH she said that the brother of his father (the brother of my grandpa) had HA for years, had always something to opened up his nose - like Otrivin (sorry for the expression my english is not pefect) and was having a bad temper...

I also noticed that my little brother (24 years old) had something similar to cluster HA last spring... he hasnt been diagnosed yet though.

BTW Wendy are you working in publicity...if so what are doing exactly... I used to be an account manager;-)

Pegase

Title: Re: genetics and ch
Post by john123 on Mar 26^th, 2004, 10:33pm

Quote:

One day the groping in the dark will bear fruit, just hope it is in my lifetime, or at least my son's if he gets it

I think we will find out the only thing common about them is the part of the physical body were the pain stems from. We are groping in the dark because we are trying to find a common cause, if there is a common cause there is more than one.