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Intoduction (Read 937 times)
catsteps
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Intoduction
Dec 13th, 2009 at 3:38pm
 
Hi,
  I am new to this forum. I am from Cambridgeshire,U.K., I have suffered with episodical CH for over 3 years. Lately I have been suffering daily bouts for the past 3 months. My warning signals are most usually a blocked left nostril,reddening of the left eye and pain in the left mandibular. I do not suffer with Horners syndrome and my eye does not run.
Prior to the actual CH occurences I was suffering from mandibular pain in the morning. I made numerous visits to my dentist who thought I may have been grinding my teeth during sleep. The CH's then developed, normally in the warmer months and then I would get a "rest" period. Lately I have really suffered.
This is the first time I have visited this site and I am facinated by the amount of research that has occured.
I am really looking forward to being able to talk to other sufferers.

     Steve
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Dallas Denny 62
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Re: Intoduction
Reply #1 - Dec 13th, 2009 at 5:08pm
 
Welcome Home Steve!! Sorry you had the need to find us though.  You didn't tell us about any prevents or aborts that you're using and everyone will want to know that.  Read about the O2 therapy if you're not already using it as it helps many of us here.

Wishing you some PF time soon

Dallas Denny
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I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!!
 
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Bob Johnson
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Re: Intoduction
Reply #2 - Dec 14th, 2009 at 8:31am
 
You're most welcome to share our little world here--but you might also look at the excellent support group in your area:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

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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--link, line above--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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Bob Johnson
 
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catsteps
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Re: Intoduction
Reply #3 - Dec 14th, 2009 at 3:50pm
 
Thanks for the welcome Bob & Denny.
Bob, I use Imigran 10mg (sumatriptan) nasal sprays and Verapamil tablets. Recently my Doctor decided to increase the dosage of the tablets but there was a complication....,I am a type 2 Diabetic and take a drug called Simvastatin which is according to the Doctors on-screen warning , not compatible with Verapamil. So the advice was to stop taking the Statin. This was about 4 weeks ago and I have only had two severe short lived CH's during this time.
  Denny I thank you for your information, in the UK we are way behind your country in relation to the reseach and support you get which is why I signed up to this forum.
I will read the article contained in the link you have sent me.
A Doctor Peter Goadsby of the institute of Neurology here in the UK recently led a study into CH that has apparently been published in the Journal of the American Medical Association,have you read this ?
     Steve
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