Hi,

I started 2 weeks ago today, out of the blue, after a whole 2 years off. I thought I remembered the pain. But nothing seems to prepare you for the savagery of it.

My neuro was specific to my GP in her last letter about Verapamil, Sumatriptan and O2. He (GP) seems to think he wont be able to get O2 for me as I'm not an OAP (33, but don't feel like it!)or recently left hospital. Has anyone else found GP's to be reticent in helping you get Oxygen? I can't understand his point of view.

Also, I have been reading everything I can (again) to find all the new information. Has there been any news on Genetics? My sons are 3 and 5 and the thought of either of them EVER having to go through this is unbearable.

James

You have an excellent group which can help you with the O2 issue:

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There is rather little information on genetics....

Lancet Neurol. 2004 May;3(5):279-83.   


Epidemiology and genetics of cluster headache.

Russell MB.

Department of Neurology, Akershus University Hospital, Oslo, Norway. m.b.russell@klinmed.uio.no

Cluster headache, the most severe primary headache, is characterised by unilateral pain, ipsilateral autonomic features, and, in many cases, restlessness. Recent epidemiological studies indicate that the prevalence of cluster headache is about one person per 500. Genetic epidemiological surveys indicate that first-degree relatives are five to 18 times-and second-degree relatives, one to three times-more likely to have cluster headache than the general population. Inheritance is likely to be autosomal dominant with low penetrance in some families, although there may also be autosomal recessive or multifactorial inheritance in others. To date, no molecular genetic clues have been identified for cluster headache. Identification of genes for cluster headache is likely to be difficult because most families reported have few affected members and genetic heterogeneity is likely. Future focus should be on ion channel genes and clock genes. This review summarises the epidemiology and genetics of cluster headache.

Publication Types:
Review

PMID: 15099542 [PubMed]
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Neurology. 2001 May 8;56(9):1233-6. 


Increased familial risk of cluster headache.

Leone M, Russell MB, Rigamonti A, Attanasio A, Grazzi L, D'Amico D, Usai S, Bussone G.

Carlo Besta National Neurological Institute, Milan, Italy.

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.

PMID: 11342697 [PubMed]

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Explore the buttons (left) on oxygen...

Hi
You are not alone, trying to get o2 out of my GP was impossible, Finally got a neuro and the o2 is now flowing. I wish you the best of luck.

Tom S

James it seems that GP's are afraid to give 02 because they don't understand it. Crazy since there is so much information available about it now. All I know is that others in the UK just keep insisting on the 02 script, or push for referal appointment to a Neuro. Try checking out ouch-uk's website - they may have some current advice. We also have many people that post here from UK so hopefully they will chime in.

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Welders O2. May be a little easier to get plus you don't have an Apria truck sitting in front of your house for an hour for the whole neighborhood to see  ::) . I hated that.

Good Luck to you
john

Thanks for the info.

Yesterday was just depressing after all.

saw the GP who was trying to fill out the OLD O2 form. He finally conceded, in not so many words, that the form was too complicated for him. That O2 was too dangerous to prescribe. That he needed a more current letter than my 2 year old letter from my Neuro and that he was just plain incompetent.

I bit my tongue. then  had 2 last night only one of which I could abort. Will try and get in contact with the Neuro's secretary. see if it is possible to be taken back in during cycle. That might help my case.

just so sodding angry.

Thanks for the info on Genetics and O2. This is the most supportive site populated by the most supportive family, sure does beat Facebook!

smiling (grimacing?) still.

James