Hi everybody,

I'm a new member from America, probably the only one ever who has been relieved to get a diagnosis of CH. I've got the incredible pain (especially in/behind the right eye), the repeated hits, tearing right eye, runny nose (right side only), the whole nine yards. I hate it, I hate it. But having the diagnosis is great, and I am largely oxygen responsive, which has been a revelation. Oddly, I feel a little lucky.

Because I'm twenty-something and female--and possibly because I had an incompetent doctor who didn't believe the extent of my pain, and maybe because I don't have good enough health insurance here in the USA to cover the kinds of repeated trips to the doctor and insistence for treatment that I should have done--it took an unbearably long time to give me a proper diagnosis. In the meantime I was told to take aspirin, given antibiotics for "sinus headaches," relaxants for "tension headaches," told they were migraines, told they were menstrual headaches that were cyclical (which they aren't and evidently weren't at the time! I can tell when my head is KILLING ME every DAY!)--and obviously none of this helped. It was only in the ER last weekend that an intelligent man gave me oxygen and asked me to rehash my history of headaches, comprising what he recognized as a full cycle almost a year ago and then two days and two ER visits of headaches this time around. I had never heard of cluster headaches before, but suddenly on talking about symptoms things snapped into place. Now I'm on day five and it is hateful but at least I have my oxygen and it makes a HUGE difference. The ER nurse also recommended a different doctor.

My main question is more practical than anything else. The last time I had these I was young and unemployed, with some money in the bank having quit a job just before. I moved in with my parents and suffered through while trying to come up with treatments that worked. The cycle lasted about eight weeks (I did keep a headache diary) but when it ended I thought these headaches were gone for good. Though I didn't believe it at the time, I eventually convinced myself that it had been a sinus infection and that the antibiotics had worked.

Now that they're back, and responsive to CH treatments (also to Imotrex, though the oxygen itself works wonders), I'm very, very depressed when I think about a future that includes recurring bouts for--well, forever. I have gone back to school and am a graduate student at a good university, but I just can't figure out what kind of a job gives people the flexibility to manage these awful things when they are in-cycle. What kinds of jobs do you have? I feel like I'm going to become a hermit again, as I basically did a year ago in between doctors' visits. I don't know what to do.

Also, and this is a real concern for me, I need a job that would come with good health insurance. Working for myself and most part-time jobs seem insufficient that way. I'm kind of despairing over having any kind of future that is bearable. What kind of lives do sufferers end up leading? I am okay with oxygen, but right now I'm almost afraid to go out for fear of not having my oxygen nearby when things start up again. I feel like after only a few days the headaches are changing me, the way I act, maybe even the way I think, even when NOT in pain.

I'm sorry if this is a bit desperate. The headaches are bad, but they were okay when I thought they might end. Now that they're back I just don't know what to do. It is helpful to find a community online, however. So I'm glad you're all around.

Hi and welcome home. 

I couldn't agree more with the words of wizdom above.  But I'll add my two cents anyway 

CH hasn't kept me from doing anything I want.  I'm a software engineer and father of 10 kids.  Everyone at work knows what I deal with.  My bosses are very understanding.

I use O2 at work and keep an e-tank in my cube and one in the car.  It is always close by.  My coworkers know that if they here the clank of the regulator and the hiss of O2 that I'm dealing with it and I'll be back working again in short order.  No one bats an eye.

I also use Verapamil as a prevent.  So the roughest time is the first couple weeks of a cycle till the Verapamil is ramped up. 

Work hard.  Work smart.  The rest will take care of itself.

-Dennis-

STOP! x3 and start over again. You're looking into the future, trying to know what your CH will be like, can you work, and where, etc. All these are questions which no one can answer but which, when asked over and over again, only serve to arouse anxiety and can lead to despair.

Learning how to care for yourself is the first task. When that is done well, you will understand HOW to care for yourself and what, if any limitations you may have. THEN you deal with those issues--but not before they develop.

Read and consider; build the concepts into your thinking until they become automatic. It works.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Learn about your CH by exploring the buttons (left) starting with OUCH. Print this article (link line 2) to start.

 
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 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]

Hi again everybody. I just wanted to thank you all for your encouraging feedback. I'm especially thankful for everybody who talked a little about preventatives. I had been given indomethacin in the ER, but in the last two days the doctor switched it to verapamil. Anyway, we'll see how it goes.

So pleased to see police officers, software engineers, financiers... I was perhaps not in the best state when I first wrote in but I'm feeling much more encouraged. My best to you all.

P.S. to Val--I study economic and financial history. Good luck to you with your own academic journey!

I don't have much to add about treatment except welcome!  And, you can and will manage to live with the beast.  Between the preventatives, the abortives, and a sense of control that comes when you find what works for you, you will be able to note that YOU are in charge of the attitude and direction of your life!

I am a self-employed family clinician who is also in graduate school.  I have had to cancel a couple of client appointments for the first time in 18 years of the beast, however that is when I found this site and started with the O2 and the energy drinks and the melatonin!  Read and learn, experiment, and enjoy the PF times!  May you have many of those!!!!