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Marjolein

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Hi
Jul 3^rd, 2009 at 7:27am

Hi!

My name is Marjolein. I'm from Holland. I've had CH since I was 17. I am now 45 years old. I always had the Episode CH but this year it seems that the episode is not passing. For months already I've had an attack every two days.
Is there people here who changed form a Episodic CH to a Chronical CH?

Pardon my English, my Dutch is much beter Wink

Thank you for reading this posting. Looking 4ward to your answer!
M Undecided

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Bob Johnson

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Re: Hi
Reply #1 - Jul 3^rd, 2009 at 8:15am

The change to chronic is frustrating but not at all understood.
---------

J Headache Pain. 2005 Feb;6(1):3-9. Epub 2005 Jan 25.

Chronic cluster headache: a review.

Favier I, Haan J, Ferrari MD.

Department of Neurology, K5-Q Leiden University Medical Centre, 9600, 2300 RC Leiden, The Netherlands.

Cluster headache (CH) is a rare but severe headache disorder characterised by repeated unilateral head pain attacks accompanied by ipsilateral autonomic features. In episodic CH, there are periods of headache attacks with pain-free intervals of weeks, months or years in between. A minority of patients have the chronic form, without pain-free intervals between the headache attacks. Chronic CH can occur as primary or secondary chronic CH; the rarest form is episodic CH arising from chronic CH. In this article, we give a review of the chronic forms of CH and focus on demographics, clinical manifestations, social habits, predictive factors, head injury, genetics, neuroimaging and therapy. IT IS REMARKABLE THAT LITTLE IS KNOWN ABOUT RISK FACTORS THAT MAKE CH CHRONIC.

Publication Types:
Review

PMID: 16362185 [PubMed]

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Bob Johnson

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JustNotRight CH.com Sponsor Offline CH version 15.0.8 member since 2005 aka GingerS224 Posts: 1300 Wilkes-Barre, Pa (USA) Gender:	Re: Hi Reply #2 - Jul 3^rd, 2009 at 9:10am Hi Marjolein and Welcome! In a word, Yes, is the answer to your question. They really don't know a lot when it comes to CH there needs to be more studies on it. But it seems to get swept under the rug all too often because there aren't too awful many of us CH sufferers. Good Luck keeping the Beast at bay and PDFAN to you!
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Iddy

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Re: Hi
Reply #3 - Jul 3^rd, 2009 at 8:06pm

Hi Marjolien,what a cool name never heard it before.

Welcome to the family. There is nothing wrong with your English, we share a common language! Clusters.

Stick around,ask your questions and those in the know will give you the best answers possible.

Tell us a little about how you have battled the Beast over the years.

All the best and wishing you PFD

Iddy

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"If you can, help others, if you cannot do that, at least do not harm them." Dalai Lama

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McGee

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Re: Hi
Reply #4 - Jul 4^th, 2009 at 10:37am

Hi Marjolien and welcome to the mad house, i live in germany and when i speak german they think im from holland Roll Eyes

your english is fine a lot better than mine (wife allways corrects me (shes german))

lots of info over to your left side <<<<<<<<< if your not on O2 then rush out today and get it. it really is a miracle worker, i kick myself for every hit, day, year ive gone through this without O2.

Mark (loves amsterdam, tulips and cheese)

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Barry_T_Coles CH.com Alumnus Offline Posts: 2073 Karratha\|,West_Australia Gender:	Re: Hi Reply #5 - Jul 5^th, 2009 at 6:57pm Hi Marjolein & welcome. It’s a strange beast we deal with; I had one cycle of clusters just before I turned 50 that lasted for 12 weeks & went away for 5 years before I had another, I went chronic at that cycle & have been that way since. Cheers Barry from down under
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Callico

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Re: Hi
Reply #6 - Jul 7^th, 2009 at 6:09pm

Welcome aboard!

Your English is fine. It is as good or better than mine and I grew up on the US.

I wnet from episodic to chronic about 5 or 6 yrs ago after being episodic for over 20 yrs. I don't bother keeping track anymore. I could figure it out if needed, but it doesn't change the pain.

If you have gone chronic you will find it has some advantages:
1) You don't live in fear of its return. You know it is coming and you can deal with it.
2) You can develope a pattern and plan your life around CH instead of it taking control with its randomness.

Jerry

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Marjolein

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Re: Hi
Reply #7 - Jul 9^th, 2009 at 6:08pm

Thank you all very much for your messages. It is a strange experience to actually be in contact with people who know what this is all about. This is new for me... getting emotional Cry

Had so much pain in the last 20 years or more. Only recently (3 yeras) I got diagnosed with CH. When I would have an attack without medication I always thought there was something seriously wrong with me that I couldn't deal with a 'simple' headache-attack. Now, when I sometimes watch a YouTube video I recognize the enourmous amount of pain and agony and it makes me so sad that I had to deal with this shit for so many years by myself...
Yes. Well. Thank you, there's all of you out there... Wink

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maalstroom CH.com Old Timer Offline ''Dance to my tune''.... the hell I will! Posts: 491 the Netherlands Gender:	Re: Hi Reply #8 - Jul 10^th, 2009 at 4:38am Hallo Marjolein en welkom. I'm from the Netherlands as well. Pascal.
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Marjolein CH.com Newbie Offline I Love CH.com! Posts: 3	Re: Hi Reply #9 - Jul 10^th, 2009 at 10:00am Hi Pascal, dank je
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