Welcome Marty

Check out the Oxygen info tab on the left,it's a good start.

Before we can be very helpful we need more information about: full range of treatments you're using; is your doc a headache specialist.

The quantity of Suma. you're using can, for some folks, change/increase their attack pattern. Generally, pill form is least effective for most CH.

Before traveling out of the country, get a written statement from your doc giving Dx and meds you will be carrying. Customs issue.

Suggest you read this full article and see if it gives you some ideas and/or may trigger some lmore targeted questions for us.
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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 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]

OTC pain meds are useless for CH and continued use creartes new problems. I'm getting a feel that you need a good headache doc.....

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


 

Replying to myself to update my symptoms for the rest who have helped me so far!  And thank you for this forum!!!!

It's 7:05PM EST. I had another episode which started at about 6pm.  I decided to stay away from Suma medication to see if I could stop this like I did last night.

Like last night, I breathed in and out as hard as I could for about 15 minutes, and my wife gave me some of the iced coffee (Blue Mountain, lots of caffeine) which I made yesterday.  I also had an ice cold water bottle held to my head.

I don't know what did it, but without Suma, the pain went away 15 minutes ago!!!!!  It will probably come back tonight since my episodes are always starting at 8:00 to 8:30 like clock work.   I hope not tonight!

But I now think that O2 therapy would work great for me, because the hyper-ventilating is close to, but not anywhere near as good as O2.

Just food for thought!

I still can't believe I didn't have to take a shot or a tab to get rid of it tonight so far!

Feels GOOD!  VERY good!