Wow, Great site. Great links on research and personal experience.

about me.  Episodic 22 years, undiagnosed 5 years, missed diagnosed 2 years. Currently in 5th week of this bout. Having 2 at night and 1 during the day. My current tx is 02 at 10lpm, verap at 360 mg in 3 doses, 120mg tabs 3 times a day ( I think I will be increasing it after reading here) and I use imitrex nasal spray. d. I have the typical signs and symptoms. left side temple, eye upper jaw/teeth pain, runny nose. Under my current tx I am having 30 minute bouts with moderate pain. No longer having 1 hour bouts with 10/10 pain.

I have been getting about 4 hours sleep per night and I am on the verge of loosing my mind. Went to the store today and on my way out after shopping, I noticed I did not have my keys, I looked at the register and the cashier had not seen them, I looked in my bag of food, not there, looked in the cart i used, Nope... I left them in the car with the car running. Needless to say, I am not in my best form.
after finding this forum, I made an appointment with my doc. I seen him today and put my foot down, he has been putting me off for a long time acting like he knows about CHs. I have Kaiser insurance. He has been my doc for 13 years and has not referred me to neurology or to the headache specialist. I am now referred after noticing that most of you mention you have a neurologist. I had a CT scan done around 1992 and it was negative. I'm not sure what labs or tests are done for CHs. 
I used to hold a piece of ice in my hand to divert the pain at night, I would absolutely die every night with pain. Currently the pain is less and bouts are not as long, but I still dred the thought of having to go to sleep.
Long post I know, but it did say include the above info. I am so happy I found this sight. It has brought tears to my eyes knowing I am not alone, because for the longest time, I thought I was. CHs have a way of just becoming normal to me and I don't expect friends and coworkers to understand. But my wife does. What a trooper. And now I think people on this sight will.

While it's good that you have a referral to a neurologist, if you have the option, fuss to get a headache specialist.

Our collective experience and studies in medical literature show how poor is the training and experience of many neurologists in dealing with complex headache disorders. No need to repeat your earlier experiences.

RE. testing for CH: are none. This is a diagnosis based on clinical signs/history, hence, the importance of having a doc who knows his stuff.

For your interest:

 
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]

I don't wanna burst your bubble, if your Kaiser headache class is like my Kaiser headache class they will tell you to stop smoking, get more sleep, get less stress in your life, and avoid wine, chocolate and msg.! All very useful for migrains, almost worthless for CH!

That being said, Kaiser neurology was great for me. Got me free 02 through APRIA, listened to everything I brought them from this board and worked with me. Hope your experience goes as well, welcome to the board!

Joe

I told the doc that I have had these ch for 22 years and Im not going to a class on headaches, he then explained this class informs you on what the neuologist basicly will inform you of so the neurologist doesn't have to waist time doing basic teaching and it is required. I was just happy to see an acknowledgement and wording "cluster headache" I think my current regiment is ok, just need a little tweaking of 02, and dosage of verap. I think I am in the best shape of my ch life after watching youtube videos on chs, I am no where near the pain I used to be in  after watching others suffer, that used to be me. I'm loving the 02, what a difference. 2 HAs last night only reached a kip3 and only lasted 15 to 10 minutes.
Best regard, Steve

Beejepper, What is "sans Attack"

"sleep through the night sans attacks"

I will check into the melatonin

Try Melatonin for those nasty night time hits.



Lefty

Thanks all for your support. Means a lot to me.

Steve