Hello Everyone....
I have been "diagnosed" with cluster headaches twice now but after reading some of you posts, I am not sure if I deal with it to the extent that you guys do.

I am 30 years old and have now had two periods of time where I have experienced the clusters.  ABout 6 years ago when I was in the Navy I started getting these horrendous headaches, always on one side of the head (the left ) and always the pain was right behind my eye.  These only lasted around 20 minutes up to an hour but the pain was unbearable.  I would literally punch my self in the head to try and take my mind off the pain.  The navy docs prescribed Imitrex which just seemed to make my head feel like it was on fire and thats about it.  The headaches lasted for about 3 months and then all the sudden...pain free.......until...about a month and a half ago they flared up again....real bad...I would wake up from a dead sleep with a pain so bad in my left eye and the area behind the eye that I just wanted to impale my eye on an icepick. 
I have gone to the Doctors and the did a CT scan, and MRI and they all came back normal.  I met with the Neuro yesterday and he prescribed 100% Oxygen.  Oh, before that, my doc prescribed a steroid pack, 800 mg ibuprofen, hydrocodone...and none of that worked.  The demarol they prescribed seems to help but I think its because it knocks me out. 

I just wanted to share my story to see if anyone else had the same thing or any other thoughts....

Thanks in advance.

Your experience is not unusual. Many folks have gone to multiple docs over several years before finding someone who understood CH and made the correct diagnosis. This reflects what a minority we are in and, accordingly, how little education docs get in school on headache. Even many neurologists fail at the task.

Starting point is to seek a good doc:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box.  Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.
=======
Read all that is here starting with the OUCH site (left), following all the internal links. Explore, as you have time, so that you know as much as the doc you consult! That approach has given many a leg up on getting good treatment.
-----
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

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:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
=========
 
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]
=======
As you read messages here you will see yourself, old experiences, new treatments, ways of coping. But do stay in contact!!

Ugadawg78 wrote on Oct 20^th, 2009 at 3:15pm:

I met with the Neuro yesterday and he prescribed 100% Oxygen.  Oh, before that, my doc prescribed a steroid pack, 800 mg ibuprofen, hydrocodone...and none of that worked.  I just wanted to share my story to see if anyone else had the same thing or any other thoughts....

Hi!
welcome!  glad you got a doc who gave you an Oxygen setup right away!!!  That Rarely happens as far as I can tell hanging out around this place.   8-)  Good Job!!  I wanted to ask if you are using a non-rebreather mask!  This is the only mask that will work.  The nasal cannula will not work... there is a great mask here at the ch.com store on the left that works better than the cheap plastic ones the hospitals and O2 suppliers give that makes all the difference in aborting a headache!! 
How is Oxygen working for you?  What flow rate are you using?
The other question I have for you is if you have heard of preventative medications before.  If I were having headaches for three months at a time I would want to start on a med that would help prevent the hits - the headaches.  There is verapamil, lithium, topamax, just to name the top few.  Might be worth talking to your doc about (before the next cycle perhaps?)  You seem to have what's called Episodic Clusters.  Most people do.  They come and go - in episodes. 
Do read Bob's articles!!  He's the guy with Lots of info!!! 

If you have questions do ask and someone will answer...   ;)  Glad you found this place! 

Val

Welcome to your new home.!

You will find all your answers here. Don't despair, that Oxygen will be your best freind.  It works great for most.  And that is a good start for sure.
   Read all you can here and ask all the questions you have.
lorac....

ps...I hit myself in the head too.  It really does help!
   just don't let everyone see you do it...they get weirded out  ;D

Welcome to the nut house family!

If you look hard enough, you just MIGHT find one or two of us that are sane.  LOL!

I am glad that you got the oxygen prescribed.  You will find your oxygen tank to be your best friend.  BUT, it must be used properly.  Go to the tab, on the left edge of your screen, oxygen info.

Hopefully that will answer most of your questions about how to use it, and the equipment needed.

IF it does not work for you, right away, do NOT get discouraged!  I do not know what flow rate your doctor prescribed, but most prescribe 8 to 15 LPM.  That works great for some, but many find that they need a higher flow rate.  Some of us use up to 60 LPM!

Oxygen suppliers and a lot of medical professionals will try to tell you that it is unsafe or illogical to use at such a rate.  Well, many of us HAVE proved that it IS possible, AND is very beneficial to a quick abort.

Don't be afraid to ask any questions that you may have.

Chuck

Hey Uga,

Glad to see that you're getting real good advice right away here.

ClusterChuck, he is THE MAN for advice on all things O2.  :)

Were those imitrex injections you were using? Asking because so many of us find that injections are the one delivery method that really works.

Okay...I am not yet very savy with all the forum reply etiquitte, but I will attempt to answer some of the questions that were put out there.

My Neuro prescribed the O2 the other day and it just says 100% oygen for 30 mins on the script...no flow rate...nothing about a breather or non-breather mask...so after reading the oxygen info and your questions...sounds like he just wrote a script to get me out of there.  I did not realize either how hard it was to get oxygen and all the stuff with it.

In response to the Imitrex...I was just taking tablets when a hit would come on.

I am going to look further for some headache specialists around the savannah area but my worry is that if mine are mostly every several years or so...if my hits go away how are they going to treat or diadnose anything.

Thanks for all the great responses....it is so relieving to know there are so many others to support and understand what I am going thru....I feel like my wife and people at work think I am overreacting or exaggerating so I can just be alone and sleep or take pain pills.

Ugadawg78 wrote on Oct 21^st, 2009 at 3:00pm:

O In response to the Imitrex...I was just taking tablets when a hit would come on.

Okay well that would explain why the imitrex didn't work for you.

If the O2 isn't quelling your attacks 100% of the time, the next imitrex to try (as your O2 back up) is the injection form, and you'll want to use use it in this manner:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE