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cn022096

Daughter of a CH mom; What are my chances?

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I came to this website to support my mother, but I also have a serious question.

My mother has had CH when she was about 19 or 20 and I'll be 19 soon. I'm just wondering what my chances of getting CH are, since some people pass it down to their kids but most don't. I mostly take after my dad's side, pretty much everything my body is is from my father's , but I'm not sure if that means anything. Please help.

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Hi cn,

I have zero scientific data on this, sorry, I'll just give you my impression from having seen probably over a thousand accounts from CH'ers (and talked to many in person) over the years:

I'm just wondering what my chances of getting CH are

LOW. :) In fact at the moment I'm not recalling an instance of CH inherited by a daughter from her mother. And even in the unlikely worst case scenario of you inheriting CH, newer treatments (such as busting, high flow 100% O2, D3 regimen) are improving the lot of CH'ers dramatically and IMO we're just getting started in that dept., so you could pretty much count on suffering WAY LESS than your mom has.

Now maybe someone with some harder statistics or what not can supply a less anecdotal reply.  :)

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And I doubt there is much, if any, hard scientific evidence out there to be found on this topic. Not enough people are studying CH, not enough doctors know about it to build up a proper demographic of who has it. Hell, most doctors don't know what it is and have never heard of it.

I'd agree with Jeebs.

Migraines run in my family, and, although this is the first time I've thought about it, I'm pretty sure they came down my father's side. I never knew my father, but don't recall my mother having any, or many, headaches/migraines. I think I'll ask her about it the next time we Facetime.

But, all 7 of my siblings have them, my children, my nieces and nephews...  you get the idea. One of my nephews is even on disability allowance because of his migraines.

But as far as I'm aware, no one in my family apart from me, has CH.

Granted, I did make some massive alterations to my hormones about 8 years ago, which my neuro think triggered the clusters. So, unless you plan on becoming a man, I'd say you're pretty safe. Even then I think the odds would be in your favour (almost said '..be forever in your favour' LOL )

If you do get them, you have something going for you that none of us did. You know how to spot them for what they are and how to treat them. It took most of us, and it sounds like your mum too, years to figure that bit out.

Hugs

MG

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Well . . . In Rozen's big CH study, 3% of the people who had CH also had mothers with CH (6% of people with CH had fathers with CH).  There's actually a lot of data showing some family connection, and when you first read those things it can sound a little scary: 14 times more likely to get CH, or even higher, and things like that. But, though I'm no statistician, I assume that would mean 14 times whatever the percent is in the population as a whole, which would mean at most (I think) 14 x .1, or 1.4%.  So the actual likelihood that you're going to get CH, while maybe bigger than you'd like it to be, is still very small.

(In general, these kind of data can be scary. You read something that says "people who do x have a 20% higher risk of [some awful thing]," and you have to take a moment to realize that if the general risk is .1%, your risk is .12%).

Migraine, on the other hand, is definitely familial.  I've read that as many as 4 out of 5 people with migraines have a family history of that condition.

My father died at 46 from a heart attack, which creates a family risk condition.  My two brothers and I all celebrated when we reached 47. We're all going reasonably strong -- my older brother is 79, and last year he moved to Cambodia, full time, because he thought he might enjoy living there for a while. 

So, cn, I'm very confident that you'll be happily CH free for many years to come, probably for your whole lifetime.

Regarding your mom, please start a thread with as much information as you can give us about her (what she's doing now for her CH, whether she's episodic or chronic -- those kinds of things).  You'll get lots of ideas for her.

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This is actually pretty relieving. I'm not even sure if this matters, but I take after my dad's side of the family; It's almost like 90% of my DNA is my fahter's and 10% is my mother's, but I'm not really sure if that means anything.

  I have such terrible OCD that it makes me think that I'm going to have them and start to feel things that are not really there, 'cause if I don't think about it, nothing is there.

  My mother is actually a member of this site. I think she goes by raquelinkansas, and goes by Rock. Not sure if you know her though. But she is the ONLY one out of our whole family who has them, so I figured I'd ask what my chances were.

  Also, are twinges just messages from the brain to the eye? Or is it a warning sign? I'm just curious.

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My mother is actually a member of this site. I think she goes by raquelinkansas, and goes by Rock.
Your mom was a very big help to me when I first came here, so please thank her for me.  I remember her posts as being pretty short, but always to the point and valuable.  She's got some OCD in her, too, if I'm remembering right.

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I'd like thank you guys so much. It pretty much sounds like I have a pretty good chance of NOT getting them, I guess it also helps that it'll be even more rare since I am female and that these "headaches" weren't passed down to my mother, since she is the only one out of our whole family who has these awful things. It also helps to know that reading about CHer's who have kids, almost all that I have read they have not been passed down to their children, and the only ones I have read that were passed down were father's passing down to a son and a father passing it down to a daughter, but that was pretty much it. I haven't heard of anything else about passing it down to their children, it's almost like it was maybe a coincidence.

And yes, I remember my mother getting on this site CONSTANTLY. She was always trying to help other's out and even tried to find help from other people as well. The last time she has been on was somewhere around october, and I told her that she should get on here very soon.  :)

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Not ignoring your question, cn, just not fully sure what you're asking. Twinges of pain in the eye for someone who doesn't have CH?  In general, I think we all get twinges all the time that we notice but don't worry about unless we have some reason to fear that they have more meaning . . . so most twinges, I'd say, are meaningless in terms of indicating a deeper problem.  I guess it's partly a matter of how often/how severe, etc.  This probably isn't answering you very well -- sorry.

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Hmm. okay. I figured I could ask because I felt something in my eye that kinda freaked me out a few days ago. It wasn't a twitch and it wasn't painful either. My friend even told me that their eye kinda does the same thing and it's not necessarily a twitch, so I guess this is pretty relieving.

Thank you so much. :)

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Everything I have seen and heard goes to CH being random. Every study has insufficient numbers... and results that point to children having about as much chance of contracting the condition as anyone in the general public.

About the twinge... I know every human alive gets twinges and strange sensations that are not medically explainable (at least not yet)... I remember as young as 5 getting alarmingly noticeable pains in my chest (heart area) and thinking something was wrong... but I am happy to say I am 56 and not one sign of heart problems and the like... and occasionally get the same "twinges".

I hope this helps.

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Cn, from your description my feeling is that you should have no concern about that twinge being related to a tendency towards CH.

So it is appearing more and more likely to me that you will get off Scott free in the CH dept.  :) 8-)

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I wonder what the percentage of CH sufferers have a parent that suffers SUNCT syndrome or migraines is.  My son has CH,  his father has SUNCT syndrome, and his fathers grandfather had Migraines.  My other son however does not have CH.  and he does in fact resemble my side of the family so I would say if it is hereditary ,, you're probably in the clear.

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I have had CH my whole life....Neither of my daughters has it.  Although they both DO have migraines...my doc thinks I might have migraines as well but they don't bother me as much or as often as the CCH.  Hope you got passed up on this gene pool my dear! Hope your mom is PF!!! :)

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