my name is justin. i had my first attack over a year ago. i wont get into all the horror, im sure u all know. went through all the tests and medications and after about 4 wks they just stopped. i never did actually get a proper diagnosis but my gf at that time spent literally days researching and learned about ch. after the headaches stopped i tried to forget about it but the thought was always there that they may return. and they did, about 4 days ago. i woke up at around 3am and immediately knew what was happening. theyre worse this time. more intense, more frequent. but the worst part is the fear and anxiety of the next one. which i know is in about 6 or 7 hours if im lucky enough to make it that long. i have calls in to everyone i know trying to find some sort of O2 rig. even if its a welding bottle with a hose on it, i dont care. i dnt even know if O2 will work for me but everything i've read says its the best bet. right now ive been up since yesterday morning living on redbull and what little food i can choke down. im exhausted and i'm terrified. i know this isnt how an intro is supposed to go and i didnt do anything on my profile, but i read the title page of this site and started crying. i knew i needed to get some of this out and i think this is prolly the best place. my mom is the only one in my life that was around thru the first attack and everyone now is looking at me like ive lost my mind. which i suppose i have.

Welcome to our world Justin. Actions you can take right now:

Go to the meds section and read the topic, "123 pain free days and I think I know why". It's a daily vitamin/mineral/anti inflammatory regimen that's providing a tremendous amount of relief to many CH sufferers. People are seeing results withing 30 hours of starting the regimen so give it a shot.

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

Read this link on oxygen. It will give you a good idea of how the oxygen needs to be utilized to make sure it works. The keys are getting 100% pure oxygen to the lungs, at a rate to support hyper-ventilation, started at the first sign of an attack.

Any chance you can get a referral to a headache specialist neurologist? There are hundreds of headache types, some of which mimic CH. It's critical to eliminate any more sinister causes of your pain so we don't end up masking the pain of a more serious issue.

Hoping we can help ease your pain, and soon.

Joe

If I understand you, you are not seeing/or have been treated by a skilled doc.

It's not wise to assume you have Cluster and to start self-directed treatment without a good diagnosis. There are a number of disorders which mimic Cluster, some of which can be quite serious.

Seriously urge you to explore your access to a headache specialist. So many of us have spent years trying to find skilled medical care that findin a good guide is essential.
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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. 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.

6. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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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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See the PDF file, below. These are the kinds of treatments which a skilled doc will be using. Good to print this article and use as a tool to discuss treatments with any doc you see.

You haven't lost your mind, Justin. And it's perfectly OK to be afraid. These things are worse than most can possibly imagine, comparing them to migraines, or other headaches they've had. I understand the relief you felt when you found this site. I felt it too and my reaction was pretty much the same. Joe and Bob are right. You really do need to see a headache specialist. A run of the mill neuro is better than a GP, but not by much. Unless they have been educated to this disease. Your quest for O2 is probably a good beginning, but you do need a proper diagnosis. I know you just want the pain to stop and for life to return to normal. But we Clusterheads have learned to accept a new definition of normal. I'm not saying you do have CHs, but if you do, please know there are effective means of combatting them. Keep us informed, good luck, and God bless. lance

i saw my gp today. she gave me imitrex nasal spray and referred me to a neurologist. the spray is way too expensive as i dont have any insurance right now. a very dear friend found an o2 tank and regulator and brought it to me this evening. i had one early this morning, around 4 i think. not sure. been pf all day though! right now i almost feel normal. i know i shouldnt assume these are ch but it sure seems like it. i am taking the right steps to get a proper diagnosis. i agree that its absolutely necessary to know exactly what is going on. i do know that i hate the taste of redbull! idk if its even helping but it makes me feel better and even if its only "in my head" (haha) im gonna have one when my eye starts watering or my temple gets hot. so ya, doing the dr thing, im in the middle of a disability determination for a mental illness, bipolar and social anxiety disorder, so hopefully medicade will kick in soon and i can get the help and treatment i need!!

Just a quick addition: you hate the taste of Redbull. Monster produces an energy fruit juice/taurine/caffeine product in different flavors. I prefer it over Redbull. And Starbucks has come out with a taurine charged coffee drink. Maybe worth looking into since many of us, myself included, are convinced these help. Good luck with the O2, and let us know how you make out with the GP. Blessings. lance

Reference the bi-polar issue. I use lithium as my prevent medication for my CH. On cycle, I take 1200 mg a day. It blocks 60-70% of my attacks. I don't know if they are still using lithium as a front line med for the treatment of Bi-polar issues, might be worth discussing with your neuro. Could be a way to kill two birds with one stone.

Joe

Re. insurance problem: some mfg have assistance plans to help. Look at:  Cluster Headache Help and Support › Medications,  Treatments,  Therapies › MEDICATION $ ASSISTANCE: 12 sources=UPDATE.

Oxygen has a strong following here. The obvious limitation is having it available when traveling, working, etc.

A cost effective alternative to Imitrex to discuss with the doc:

Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Hi Justin_Acheson
I'm a newbie on this forum. I understand what you mean by fear... You're not alone. I'm still always fearing a crisis, after 32 years living with this illness.
The right medication after the right diagnostic will help you calm these fears (and the pain), but I have to admit I had to learn to live with this fear. It's always like a sword over my head. Always.
My solution has been to try to relax and kind of tame the beast.
If you read my first post (A new head? lol), you'll see I lived with this monster for very long without any medication. I developed my own way to fight it. I tried to describe this way in my 1st post, although I tend to write a novel every time my fingers start touching the keyboard.

My best ally in my journey against the CH monster has been ice. Read my post for more details, or just ask me for more details.

I also have taken lithium as a basic med for CH, and I'm almost certain lithium is still a good med for bipolarity. So in a way you seem to be lucky as one med can maybe relieve both these conditions you have.
In the darkest hours of pain, always keep in mind that a time comes when you will be free again. Free of any pain. Somehow.
As the others pointed out though, it's important to see a specialist, especially because they have a solution for you.

Hi Justin
I been suffering for 30 years and I remember the first time it happend to me. I thought I was having a brain anurism or somthing like that. But it went away pretty quick and didn't have another one for a few weeks. I then played the game of doctors misdiagnosis, go to dentist, try this try that till one day I got a specialist who discribed to be what was happening to the letter. And the damn headachs still scare me to this day. I just found this site myself and it make me fell better to know that there are others out there who understand the pain. No matter how you try to tell someone how bad it feels only the people on this site KNOW HOW IT FEELS. And with that I find a lot of comfort.
Hang in there and know others are on the same roller coaster

Hang in there man. If you are indeed suffering from clusters, the worst is now behind you. You have access to wealth of information and an active community of fellow sufferers who can give you the tools and emotional support you need to deal with this. I've used this site and forums for years while dealing with my clusters, generally popping in when the beast is back and sort of disappearing when it goes into hibernation. From my own experience, it was the not knowing that was the worst by far. Hopefully in time you will feel the same.