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New CH Supporter (Read 1067 times)
Dawn49
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New CH Supporter
Apr 7th, 2009 at 11:08am
 
Hi Everyone - my name is Dawn
My husband has recently been diagnosed with CH and being the way I am - I read any information I can about a topic to understand it and through OUCHUK, I found this site. Watching him go through one of his attacks is heart wrenching. As he suffers from chronic pancreatitis, I first thought he was having an attack from that - then he said that it was his head! Oh the poor man, as if he doesn't have enough pain with the pancreas now he has these headaches to contend with  Sad I only wish I could take over some of the pain to help him!

My heart goes out to all of you that suffer with CH!!
Dawn x
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Bob Johnson
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Re: New CH Supporter
Reply #1 - Apr 7th, 2009 at 11:23am
 
Glad you're here! Are you in the UK or just find us from OUCHUK?

If you have specific issues/questions, start posting! Going to send a couple of pieces to get things started.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

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HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
_________________________________________
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002. Rozen)
================
Treatment guidelines from Europe

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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.

Download free full text:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register
(Thanks to "cluster" for link.)


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Bob Johnson
 
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Dawn49
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Re: New CH Supporter
Reply #2 - Apr 7th, 2009 at 11:29am
 
Hi Bob

Apologies I should have mentioned where we are from Smiley We live in Bournemouth, England. Our doctor recommended that we look on OUCHUK for information.

Thank you so much for the information posted

Dawn
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Guiseppi
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Re: New CH Supporter
Reply #3 - Apr 7th, 2009 at 12:20pm
 
Bob's given you some great reading. If you haven't already caught on, your husband suffers from an unfortunatley rare ailment. It requires the patient do a lot of the research and then discuss options with the doc.

If your hubby doesn't already have oxygen, do look into that right away. It's having amazing success as an abortive. I can knock out an attack in 6-8 minutes...as opposed to the 45-90 minutes I used to spend "head banging!" Read the link on the left as it must be used correctly or it doesn't work.

That being said, bless your heart for being a supporter. My wife found this site many years ago and saved my sanity. We try but it seems we never thank our supporters enough. Smiley

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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mrs mac
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Re: New CH Supporter
Reply #4 - Apr 7th, 2009 at 12:53pm
 
Dawn49 wrote on Apr 7th, 2009 at 11:29am:
Hi Bob

Apologies I should have mentioned where we are from Smiley We live in Bournemouth, England. Our doctor recommended that we look on OUCHUK for information.

Thank you so much for the information posted

Dawn



Hi Dawn

sorry to hear your hubby has CH, but am glad you're GP mentioned OUCH UK

if you need any more info or to speak to another supporter, may i suggest you give the OUCH UK helpline a call, they do have a supporter who is also on the helpline (me  Cool) and i would gladly have a chat with you and answer any questions you may have

the number is 01646 651 979, just leave a contact no (pref landline) and a short message and someone will phone you  back, they can also get a message to me if you want to talk to a supporter specifically!!

have a think, you don't have to be an OUCH UK member to phone the helpline

take care Sandra xx
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Dawn49
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Re: New CH Supporter
Reply #5 - Apr 8th, 2009 at 7:50am
 
Thank you all so much for your replies  Smiley Sandy, I have made a note of your number.

We went to the doc this morning and he has started Billy off with Sumatriptan nasal spray. He did mention the oxygen but wants to start off with the spray - he has another patient with cluster headaches who has found the nasal spray quite successful, although he does understand that each person is different.

Amazingly last night was the first night in weeks that Billy did not get woken up with an attack, so perhaps he has come to the end of a "bout"? Whether he has or not I will continue to read and learn from anywhere I can.

Again - thanks to all  Smiley
Dawn x
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Guiseppi
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Re: New CH Supporter
Reply #6 - Apr 8th, 2009 at 10:05am
 
That's great news, sounds like you may have a doc who's up on CH. That's a blessing in itself. Here's hoping the cycle has ended, if so, by all means do stick around! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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