Hello all... I was just diagnosed today with cluster headaches.  It seems I'm lucky (not in the pain) in that I get one regularly every 3 months for the last 2.5 years.  When he asked me if I had a choice of medicine to take between heroin and advil, I asked him if he had anything to just knock me out cold.

The last headache I had my wife had to literally stop me from grabbing a knife and cutting my eye out.  I don't think anyone can appreciate the pain unless they go through it.  

I was told to try Aleve mixed with Immatrex when I feel it come on.  then if the pain gets worse use injection immatrex and oxygen.  We'll see how it works in a few months I guess.

I can't imagine those of you that go through this multiple times a day for weeks on end.  My thoughts and prayers go out to you and your loved ones.

Well that feels good to get all that out there.  It's nice to know that I'm not alone and I really feel for all of you.

Thanks!

I agree it helps just to know we aren't alone.
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Quote:

I get one regularly every 3 months for the last 2.5 years

Are you saying that you get one CYCLE every 3 months?   or one HEADACHE every 3 months?


Quote:

he asked me if I had a choice of medicine to take between heroin and advil,

That is a very strange thing for a Dr. to ask you in my opinion. Advil or  Aleve won't do squat for cluster headaches and narcotics do nothing either except make it so you cannot function when you need to keep a clear head to help yourself through the ordeal.  Narcotics are prone to give one rebounds headaches also.  Not to even mention the addiction part of taking them.

Oxygen is our first-line abortive around here, so that is good.

Linda

Glad you found CH.com because it is a great family and at times you need to express how you are feelings and pose questions about the treatment you are or are not getting.  Linda is spot on with her comments.  You mentioned only briefly your use of O2, but I think many of us here will attest that O2 is the first line of defense, but as I was taught here for O2 to be the most effective (1) you must act and not react, if you feel the beast coming get on the O2; (2) you must have a regulator with a minimum of 15lpm (I prefer 25lpm, but many have great results with 15lpm) (3) you must have a good non-rebreather mask and (4) try your best to remain as calm as possible.  4 is the most difficult.  1-3 you can do.  You have to stay patient, again difficult, but if you can you normally can knock a 7-8 down to a 4-5 in minutes if you act quickly and stay calm.  Then totally abort in a few minutes later.  You need to stay on for 10 minutes longe to be sure it is completely aborted.  I mitrix is good, but if possible try to hold off to see if O2 won't work.  Take care of yourself and get rid of those knives.  Wishbone

I never wanted to cut my eye out, but was convinced if I could cut the nerve that ran from the base of my skull to my eye I could stop the pain! (Oh shut up all of you you've all had similar thoughts! ;D)

Linda and Ernie are spot on, Oxygen has proved a silver bullet for so many on the board, statistically speaking, it should DEFINITLEY be given a shot to see if it works as well for you as it has for many!

Welcome to your new second home brudder!

Guiseppi

Immediately edited cuz I still can't spell!

Okay, but I didn't think we were to tell Newbies everything.  I wanted to cut the nerve at the base of my neck (left side), but just in case that was not enough I wanted to cut the nerve in my temple as well above my left ear.  Only after of course beating both with my fist until my hand, neck and temple were brused and sore.

Okay, but I didn't think we were to tell Newbies everything.  I wanted to cut the nerve at the base of my neck (left side), but just in case that was not enough I wanted to cut the nerve in my temple as well above my left ear.  Only after of course beating both with my fist until my hand, neck and temple were brused and sore.

And let's not further scare them by telling them the stats on the number of people who have had perfectly healthy teeth pulled too!!! ;D

Guiseppi

 You are not alone I get these ch's daily,  I go insane when my imi doesn't work I have scars on my arm from heating a knife up to steralize it so I could take my left eye out, my wife grabbed the knife when I wiped it on my arm and there was smoke.
 Good luck with this and be carfull with the imitrex,  the way it looks is that dr. said to take a pill first,  for myself pills are to slow but they come in handy when your in public or other setting when you cant take an injection, you can also find imitrex tip link to the left.  take care,   Phil  

IF your doc suggested Aleve--then this suggests he is not skilled in treating complex headache disorders. OTC pain meds are simply not appropriate for CH.

Using the Imitrex pill is not effective for most folks here; too slow acting. And delaying using the injection form until the attack has developed fully will reduce the effectiveness or even render it useless. The general consideration: the rapid onset of CH requires an abortive which goes into action rapidly and hits hard for the relatively short span of the attack.

Please consider whether a new doc is in order and, if you're interested, get back for some leads.

Suggest, also, that you explore the buttons (left) and look over these links:

 
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 best 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]
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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:

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"IF your doc suggested Aleve--then this suggests he is not skilled in treating complex headache disorders. OTC pain meds are simply not appropriate for CH."

He said that there is a new medicine out that combines aleve and immitrex into one medication.  Basically, I already have immitrex (the first dr. I saw years ago thought I just had a migrane) so he suggested that I try that combination to see if it works.  If it doesn't then go straight to the injection and O2.

"Are you saying that you get one CYCLE every 3 months?   or one HEADACHE every 3 months?"

Actually I'm really lucky... just 1 a night for about 2-3 nights every 3 months.  He said that was unique (less than most people), but all the pain, symptoms and so on go right with cluster headaches.  Like the fact I'm ready to tear my temple out after trying to bash my head through the wall.

"he asked me if I had a choice of medicine to take between heroin and advil"

To clarify this, he wasn't going to give me heroin, he was trying to gauge the pain I feel.  Like what would I do to get rid of it.  I've never tried hard drugs, but if I thought it was going to help, I'd grab it in a second.

Thank you all for the support and the help in controlling them.  I don't know if this combination of medicine will work for me or not, but I'll let you know in about 3 months.  Kinda sucks I have to wait until then, but I guess that's also a blessing.

Hi..I'm also new to this site, and I have spent the last two days reading as far back as I can. Their is a lot of great information in here and some people that care. Knowledge is power and it doesnt hurt to try to talk to someone that cares...I do wish you well.

shark boy