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.

Sorry you had the need to find us but Welcome Home!  You have arrived at a place where we all "get it" fully understand your battle with the beast!

Your O2 flow rate sounds a bit low so read the info on the yellow highlighted oxygen tab on the left nav bar, print it out and take it with you when you go to the neuro.

Most of us find O2 effective at a minumum flow rate of 15lpm with some folks requiring 25 lpm and higher.  At 15 lpm I can abort a hit within 5 to 8 minutes!!

You might also want to check out the success some are having with alternative meds by clicking on the Clusterbusters tab at the bottom of the nav bar.

Again, Welcome to the community!  Wishing for some PF time for you soon.

Dallas Denny

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: 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]

Thanks for the replies, I am bumping up the 02 to 15lpm and have a non rebreather on the way. I read the 02 info.... great info.
This site is great, every search I have done has given good results. "yawning" I have uncontrollable out of this world yawning, so do other clusterheads. Hmmm, I know its related to Co2, I don't need to know more, just found it interesting that I could find yawning and clusterheadaches. I don't find that in typical literature relating to CHs.
I keep falling asleep with the 02 on with a regular mask. I find myself falling over and hitting my head on the headboard, because I fall asleep sitting up. I cant help but laugh at myself. looking forward to the dance tonight with the 02 cranked up!! Bring it on
To see the neurologist for headaches at Kaiser hospital, I have to take a headache class, this class is for clusterheadaches!! so I am assuming that this neurologist will be a headache specialist. This makes me mad at my doc for not referring me to this before. only until I demand to be see by a specialist did he come forward with this info and make the referral. I'm running on little sleep and get pissed easy, I will let it go.

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

Hey Napa.

I see you're getting the good advice here. Cool.  8-)

So you're falling asleep with the 02 going. When you get into that high flow O2, you'll wanna use a non rebreather mask and hold it to your face, no strapping on, so you won't fall asleep with it on. I guess the non rebreathers all probably don't even come with straps anyway, but whatever mask you're currently using, no strapping allowed.  :)

Although it hasn't worked for me, several people here have reported that around 9 mg of melatonin before bed enables them to sleep through the night sans attacks. I bet you could get into that.  :D

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

I ran out of 02 2 or 3 times this bout, and yes, I had the strap on, (sounds funny) I will be removing the strap. I'm not ready to go just yet. thanks for the reminder. You would think I would have already done that, but I guess I don't like holding the mask and I keep thinking I will remove it before I run out of 02.
thanks

Beejepper, What is "sans Attack"

"sleep through the night sans attacks"

I will check into the melatonin

Sans=without

    Potter

Try Melatonin for those nasty night time hits.



Lefty

Napa,
freckinaright!!! I found this place over 2 years ago without a clue.. Just like you.

I likke how you put your foot down!! take matters into your own hands!!! Get your weapons in order.

Sorry it took so long to find ya.. coach bill

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

Steve