I am new but want to ask a general question about genetic inheritance and realise I posted this yesterday in the wrong place.

I now have CH. In fact realise I have had it for 40 years.  First attack horrendous, in between various shorter less intense attacks until two years ago.

My mother often used to wince and hold her head but being the often bad tempered woman she was would shoo me away if I asked what is wrong.  My youngest daughter who is 26 now was admitted to hospital because of terrible one sided head pain and scanned for tumours etc., No diagnosis in the end and the pain reduced after a few weeks.  She noticed it when excercising - difficult when you are a dancer!

My eldest daughter now 42 experienced her first 'migraine' as diagnosed by local GP, 2 weeks ago - she had droopy eyelid - like me and dilated pupil with watering eye and one sided pain.

So I am wondering

There are some people who post here that have family members with CH like they have. I think it's many's worst nightmare come true when it happens. I know my husband, a CH sufferer, is always worried it will happen to our girls.

Arm them with information - there are tools to help, bring them to the site so they can learn more and take info to their doctors.

Bless you all...

Christy

Have them take the "cluster quiz" on the left.  It is not for diagnosis, none of us can diagnose, but it is useful in directing your attentions. 

CH does not seem to be hereditary, but there are several here who have it run in the family, so there may be some genetic component that has not been discovered yet, but bear in mind the very small amount of research that has gone in to CH.  That is the reason OUCH is so important, and that I hope you will become a part.

Jerry

Quote:

Neurology 2001;56:1233-1236 Increased familial risk of cluster headache M. Leone, MD;, M.B. Russell, MD, PhD, DrMedSci;, A. Rigamonti, MD;, A. Attanasio, MD;, L. Grazzi, MD;, D. D’Amico, MD;,  S. Usai, MD; and G. Bussone, MD From the Carlo Besta National Neurological Institute (Drs. Leone, Rigamonti, Attanasio, Grazzi, D’Amico, Usai, and Bussone), Milan, Italy; and Department of Neurology (Dr. Russell), Copenhagen University Hospital, University of Copenhagen, Denmark. The authors studied the occurrence of cluster headache in the families of 220 Italian patients with cluster headache. A positive family history was found in 20% (44/220) of the families. Compared with the general population, first-degree relatives had a 39-fold significantly increased risk of cluster headache. Second-degree relatives had an eightfold significantly increased risk. The increased familial risk strongly supports the hypothesis that cluster headache has a genetic component in some families.

Thank you all for the replies.  I guess it is because I am clustering at present, they make me weepy ( generally not very sentimental type!).
I have been on the ouch website to check this already and talked to both daughters about this.  As you say not much research and the population of research so far is very small.

Incidentally from all your experience do you lose energy in all limbs while you are in the grips of this?  I wash up and then have to sit for a while, even going upstairs requires a sit down and on my shop there is a delay of one minute to turn alarm off, for the first time in my even years there, I didn't make it in time yesterday and it is a small shop!

Judi

Judi do you get any pins and needles or loss of grip/cramp in hands with that? It might be an idea to have a blood test. My whacked out calcium and potassium levels can make me feel like that when they're just mildly depleted - worth a check up!

Helen

I can't speak to any specific research or studies, but I am a chronic, and 4 years ago my son was diagnosed with CH as well.  He's now 17, and responds beautifully to Oxygen therapy (can take out a hit in 8 min.) and also has familial migraines.  He's episodic, so I'm hoping by the time he is older and things get far more intense, as seems to be the pattern with the younger ones, that there will be newer more effective meds available for him. 

It's a parents  worst horror with this beast, it's one thing to take it on ourselves, but to watch our children suffer it is utterly gut wrenching and heart breaking.  It's the definition of feeling helpless.

Cat

Helen, thanks for this, no I don't get pins and needles, I am just wiped out and am finding that I can't get energy through my body until at least four hours after waking, then I can do a few thinga but I am still quite limited.  I do have the underlying health problem of Peripheral Vascular Disease and it does limit me, but not anywhere near this extent.

Judi

Catlin

So sorry about your son,it is horrible to know or think your genes have passed on anything awful, but I bet you have also handed on some great genes too and you can't take responsibility of any of it.

Judi