Hi Mike,

Spend some serious time reading this board and you will find a LOT of things to try.

On your O2 question: check out the link on the left side of your screen. For me, O2 is the magic abort treatment ONLY if I breath 100% at very high flow rates. At 25LPM, I've never had a "hit" last longer than 15 minutes and typically it kills them in 5-7 minutes.

I've been chronic for about 12 years and I'm one of those people who said that "oxygen doesn't work for me" for many years. When I bumped up the flow rate, my whole world changed. No, it's not a preventative so the CH's will return, but at least I'm no longer in the agony of yesteryear!

You can buy a high flow regulator online for $50-$75.

Marc

 
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]
===================

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)
================
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


 

O2  O2  O2

Go to the Medical section and see the PROPER way to use it.  High flow rate  and with the right mask - it's a lifesaver for a lot of us...

I can abort a hit in no time flat without meds.  Sometimes with the "high hits" (over a 6-7) I throw in a Red Bull, but most of the time I hit the O2 at the first sign of a hit and it works great.

Hugs BD

Mike,
    See my post below, yes I feel my cycles are getting longer, I'm 53  and my periods of remission have been getting longer as well. I was HA free for three years prior to this cycle, my longest remission period in 15 years.
     They still suck, pure and simple.
     O2 delivered at 15LPM knock mine out faster than Imitex injections, I will have a demand valve and be going to a higher delivery rate in place for the next cycle. Get a good non-rebreather mask, Lifegas offers the one I use and it helps greatly. Check into it. Great product and great people to work with, I have no affiliation to Lifegas, just personal experience. Good luck and keep up the fight.
Melatonin 12mg. an hour before bed helps me get through the nights pretty well, and you'll find a lot of info. regarding it's use. My Neuro. suggested changing brands as I was not getting the desired results, and I'll be darned if it didn't work. Sometimes they do throw out an idea that actually works

gman11 -

While still very new to this board I have been dealing with CH for more years than I care to remember.  First - it sounds like you need to find another doctor.  It took me years to find a good one who actually knew what cluster CH is.  A doctor with some knowledge of this condition will give you a lager script for Imitrx but, more importantly, will reccomend other prevents like a higher does of verapmill, a steroid burst, lithium, etc.  Lastly - definitely get the script for the O2.  I am looking for the right mask and regulater based on all the positive comments I've received. 

Keep up the fight!

I had my first steroid shot today....WHOOOOO.!
.....still afraid to sleep tho-