Hi everyone, I'm Carolyn.  Just been diagnosed 2 months ago, been a chronic sufferer for 3 and a half years now. The last 6 weeks I'm having between 2 and 8 attacks a day, o2, duloxetine, indometacine do not work for me.  Getting new script for Imigran and morphine patches tomorrow!

Carolyn wrote on Jul 2^nd, 2010 at 5:09pm:

Hi Fred, I live in County Durham and was referred to a headache neurologist though my doc. who prescribed me the 02 no problem.  You must see a headache specialist who understands what your talking about.  BTW... the 02 diddn't work for me, but as you will know it's all trial and error.  Good luck.

How were you using the O2, what type of mask do you have, what was the lpm?  Did you get to the O2 as soon as your headache started or did you wait?  All these are factors in how successful O2 is (unless you are one of the few that O2 does not work for).

There are many other prevents beside Cymbalta (duloxetine).  It is rare that opiods work for clusters and even if they do, there is a high possibility of rebound headaches.  Not to mention the fact that you're dealing with a highly addictive drug.

deltadarlin'~aka~carolyn (supporter)

I too would urge great caution over the use of morphine or other narcotics. They are unlikely to do much to kill the CH pain other than potentially knocking you out. Narcotics are highly addictive drugs, with pretty unpleasant withdrawal symptoms.

You will do much better with a combination of preventatives to try to stop the CHs from starting and abortitives (oxygen, Red Bull, imigran, etc) to cut short an attack.

I strongly suggest you read through lots of posts here as you'll find a lot of very good suggestions as to what people find does work without using narcotics.

For many CH sufferer's Narcotics often make a CH hit worse not better, needless to say the worse pain starts before the narcotics may or may not knock you out. 

Read all you can on this site and for your sake don't use narcotics to treat a CH hit as I said they can make the pain worse and cause nasty rebound CH hits.

Check with your doc and get on a daily prevent if you're not already and get O2 and imitrex to stop the hits when you get them.  Ask your Doc about Verapamil or Lithium as daily prevents.

Thanks guy's... can't beleive I'm actually talking to other sufferers, I'm not the only person!! :) that makes me feel better already, I tried 15l per min for 20 min as soon as an attack started, for me it just prelonged it a while then hit as usual.  My neuro said it doesn't work for everyone..  I am very wary of taking any meds but when at the end of your tether, I'm willing to try anything! I will read patient leaflets enclosed and speak to my doc.

You have a fine support group which you may wish to explore:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
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Medical literature and our collective experience shows that many neurologists have very limited education in treating headache. If your doc is open/receptive, you may wish to print out this material and give to him. At the very least, it will give you some tools to use discusss treatment options. As noted, using narcotics for CH signals a doc who is not.....

See the PDF file below.
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Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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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A suggestion I make to many for whom 02 seems to just "prevent" an attack instead of killing it. I've had trouble with the attack that comes back 10-20 minutes after I shut off the 02. Now I chug a Red Bull down as I'm huffing the 02. 02 kills it, Red Bull keeps it at bay. Might be worth a shot!

Joe