My husband was 55 when he first got these CH 3 years ago.  He was diagnosed in Jan 08 and his cycle lasted about 2-3 months.   He was pain free until about 6 weeks ago, when they started up again.  Always at night around 10:30.

We live in Ohio, but he's an Executive who works in the Chicago area and is only home on the weekends so getting an appointment with a neurologist is hard.  I'm calling this am since he's working from home this week.  Hopefully I can get him in.    He's not on any meds right now and his pain is about a 6.

I found this website this weekend and have been reading and would like to ask a couple of questions.     1.   His CH start at 10:30 p.m. and will last about 3 hours; however if he tries to lay down to go back to sleep, they start again.  Is this normal?   He's usually up all night and with a stressful job, he's not sleeping real good until he gets home on the weekend.

2.  I read here that caffeine works good to abort the CH.  He made a pot of really strong coffee last night, and it did work to lessen the pain of the attack, but still up most of the night.  (He was up all night even b4 the caffeine too)

3.  He flies every week.  If we were to get some oxygen, is this something he could take with him on the plane?  and

4.  He has a defibrillator, is on heart medication and has emphysema.  Will he still be able to get these meds you talk about from the doctor?

thanks in advance for answers and sorry this is a long first post.   

Hubby's wife.

Lance,

Thank you for your quick reply to my questions.  I've written down your answers in a notebook and will continue to research through this website.   I called the Cleveland Clinic this morning and got an appointment for July 8th.  The lady said I could call every morning around 8 and ask if there are any cancellations for the day, so that's what I'm going to do in hopes of getting him this week.    If I have any more questions, I'll be sure to ask.   

Susan (hubby's wife)

Re. Cleveland Clinic: Are you trying to see a general neurologist or a headache specialist? We strong suggest the specialist because so many neuros lack much training in complex headache disorders.

His heart condition will limit some of the abortive meds but options are available.

He is at the age when first starting Cluster is not common and so some attention must be given, in the diagnostic work-up, to a number of disorders which mimic Cluster but which are not headaches (some of which are rather serious).

Regardless of who you see, directly ask them to consider "cluster-LIKE" headaches (term used in the medical literature) in making the final diagnosis.

When you have a firm Dx in hand, please tell us and then we can supply more focused information which you may find useful. It's simply not wise to start using self-directed treatments until it's clear what you are dealing with.

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
PRINT OUT.....
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A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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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]
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.

Bob Johnson - thank you for the reading material.  You're going to keep me busy for a while.  I just hope I can "understand" all of it.

Mike - I'll post what it is we find out.   

Thanks everyone.

Susan D