Glad you found us!  That is what we are here for.

May I suggest you read, read, then read some more.  When you develope questions ask them!  There is no dumb question if it is an honest question, although you may get a dumb answer or two!   There are some very knowledgeable people here, and some of us are good for comic relief, and some of us are good for . . . .   

Especially may I suggest you read the "oxygen info" button in yellow on the left of your screen.  Many of us have found oxygen to be a life saver, but it must be used properly or it is no good at all.  In fact, used improperly it is worse than useless because it gives one the idea that it won't work for you.

Jerry

The med the ER gave you won't work with CH--pr at least no useful data yet. Print out this entire article for your information and the second item, a list of current therapies, you could take back to the ER doc and negotiate for a more effective treatment.

(7/16.I screwed up! Didn't read how you got some effective meds from the second M.D. Still, the article is worth digesting to understand what is going on.)
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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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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


 

Hey there!....  Wow!  That's a lot of info, thanks allot people, can't believe the response and support I'm getting here. The only med I got from the doc, was the prednisone and the zomig, no preventative! I'm gonna get all this info to my doc, and let him get informed and will sit with him and discuss options, he's a good doc, but he's my GP, not the neuro I saw at the hospital.

Hi Larry, odds are you may have better success in the education of your GP armed with the knowledge available on this site.

It is not lost on the community that Neurologists can be more that a little hard to deal with. It's that God complex because they spent X number of years getting their degree that they will listen to nobody!

I was lucky,my GP was and is willing to learn about our shared affliction.

All the Best

Iddy

Ok, here's an update on my status, tapered off the prednisone, and starting to get my sleep back, no attacks since I started the pred, which was the 6th July. Shadows come and go, telling me the beast still lurks.....but nothing compared to a full blown attack. Taking melatonin since the 15th, seems to help with the sleep, but need to follow up on that...

I have been seeing a neuro from the royal Vic neurology centre, she is the one who gave me the pred script. I spoke with her today, she wants to keep me off meds until the next cycle, she seems to think that the prednisol broke the cycle, and gave me a script for Zomig to take in case an attack would arise...since I have no history of lengths of cycles and/or attacks. a suivre...

I will be going back to my neuro, had two attacks yesterday, 2pm and 3am, kip 6-7, took zomig and the pain went away within 15-20 min. so it's back to the drawing board...pfffft!

Hey Larry,

As Michel said (and many others), oxygen is a must with CH.  It aborts the pain within 10 minutes, sometimes faster if you jump on the tank a the first sign of an headache.  Ask the neuro for prescription (and you can get it from VitalAir, the only supllier I know but there is probably more).  If she/he doesn't know about O2 for CH, you can try to gently "educate" her/him.  O2 should always be prescribe along with the triptans since most of us will easily need to abort more than what it is permited with triptans (i.e. two doses maximum in 24 hours).  I use O2 at home and I keep the triptans for when I am away from home.  Also, if the O2 don't work for this cycle, I must stress you to give it a try for the next cycle.  This happenned to me (I was so disappointed to see that what was working so well, just didn't do anything anymore), and fortunatelly because of this board, I tried it the next cycle and it just worked as before -thank God.

blue

Hi all... looks like I may be out of cycle, after two months, I haven't been hit since the 28th July. Now going forward will monitor what happens, talk to the neuro about a prevent, see what she has to say...Thanks all, I will be visiting often.