G'day Barbara and welcome to ch.com, the biggest unfenced lunatic asylum outside of Canberra. Sorry you had to come looking for us but here we are, large as life and just as smelly.

Good that you were able to get onto oxygen so easily, even if it really was by roundabout means, now all you need is the mask recommended by all leading sufferers of this dread disease - a non-rebreather mask most likely available from your pharmacist and certainly through the site here.

You're also dead right that getting onto it at the first hint of a hit is the way to go.

Let us know how you're getting on because we really do know what you're going through and you're now amongst friends. There's even some other girlies here so you can talk behind our backs.

Bestest always to you and yours,

Brian up north.

If your neuro will listen to you, try educating them! 15 LPM with a non re breather mask is the minimum. If it loses it's effectiveness, consider jumping up to 25 LPM or more.

Your dose of verapamil is low, some go as high as 960 mg a day but it does require close monitoring as you go up.

Welcome to the board, in short order you'll know far more about CH then your neuro!

Joe

If you stick with your neuro then give him medical materials, not comments from our messages, by way of educating him.

Print out the PDF file below and a full version of the article. They will help educate both of you and give you common ground to discuss treatment options.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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Also,

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

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)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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


 

AussieBrian wrote on Nov 21^st, 2010 at 6:40pm:

Smelly???  Speak for yourself Brian !   

Welcome Barbara sorry you had to join us, but glad since you needed to you found us.

If your neuro isn't more helpful after your next visit I would definitely seek out a Headache specialist or at least a new neuro.

Hope you find some PF times soon!