I'm the spouse of a person dealing with Clusters. We've been together for just over twelve years and honestly, until a few months ago, we had no idea what was going on. Several times over the years we attributed the pain to dental issues. Seems to be that the pain subsiding was just coincidental to the completion of any dental work.

Also, until a few months ago, neither of us had ever heard of Cluster Headaches. Nor had we known his father had them beginning in his twenties and back then there was no clue what was going on. His father would go outside with a drink (alcohol) and wait it out quietly. My husband is the exact opposite, not the stoic type with relation to these things. Being a control freak, it kills me that there is nothing I can do but sit at his side and allow Reiki to flow through me to him. I hate that I can't waive a wand or something and make it go away.

While I'm glad we know what we're up against, I still feel like we're behind the eight ball.  [smiley=frown.gif]

Well Jesse, you've come to the right place to get in front of that 8-ball.  There is so much information here that I'd like to suggest that you start by reading the links to the left of here.

Besides getting a firm diagnosis, the next step would be in getting on a regime of a preventative like Verapamil and Lithium and an abortive such as pure oxygen. 

Your spouse is lucky to have you in his corner doing some of the legwork.  His father going outside with a drink is a big NO-NO around here as alcohol is a definite trigger and no doubt it made his headaches much worse, so tell HIM not to drink when he's in cycle.  Please stick around and ask questions as they arise.   None of us are Doctors but together we have 1000's of years of collective experience with this condition.

Linda

Your story is all tooooo common here! Good news is that we have a decent array of effective treatments.

If you have the option, suggest you find a headache specialist. Too many docs lack adequate training/experience to help with a rather complex area of medicine.
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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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Self-education is essential. Start with the buttons, left, the OUCH site first; explore others as you have time.
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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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A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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See the PDF file, below, for the kinds of meds you may expect a good doc to be using.
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IF you want a easy to read book, get the second title:

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
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But read, read, read here. YOu will find yourselves in spades and learn from the experience of decades of collective experience.

Just be patient! Cluster does not lend itself to instant fixes; you may have to work with your doc for awhile to identify a treament program which works for you.

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Hey Jess, welcome and glad you're here. Supporters are so important. Even when we find interventions that tend to work, like O2 and energy drinks as abortives, when the pain rises we tend to forget there are other people in the world. My family has learned to intervene by making sure I have the things I need at hand-O2, Monster, trex or migranal...and then they provide a human shield against intrusion by answering the phone, or the door, or by keeping our guests busy while I deal with the unwelcome beast. If you can, get your husband to sign up and talk with us as well. In the meantime, God bless you! lance

Welcome to the board Jess. We're pretty fond of our supporters around here! [smiley=hug.gif] My wife found the original streaming CH board a hundred years ago and saved my sanity for me. Read everything, learn to be an aggressive advocate for your partner. There is still a dreadful lack of knowledge in the medical community about CH. The down side of a rare disorder. Follow Bob's directions to get to a headache specialist neuro, your best shot at some of the more modern treatments. read everything here on the board and take it back to your neuro. An educated CH'er hurts a lot less.

Joe

Hi, Jess. May I call you Jess? Thanks Jess.
And, thanks for being a great supporter to your husband. Most of us here like to be left along during the attacks. For myself, no talking, no touching and please leave me to be by myself. Find a time to talk to your husband when he is not in pain. Ask him what he wants you to do. Please don't be upset if he says "Please, leave me to get through it on my own." It's nothing personal. It's a survival thing. And a man thing.

It's also a woman thing Bob.   ;)

Linda_Howell wrote on Jul 10^th, 2011 at 2:41pm:

It's also a woman thing Bob.   ;)

Women don't get CH silly! ::)     he he he...running away quickly!!

Joe

What is fairly common (myself included) is for our supporter to be around, especially in getting on the oxygen, but otherwise to let us deal with it. However being near is great in case something happens.

Everyone is different, just ask when they are not in the middle of a CH.

Guiseppi wrote on Jul 10^th, 2011 at 5:05pm:

Linda_Howell wrote on Jul 10th, 2011 at 2:41pm: It's also a woman thing Bob.   ;) Women don't get CH silly! ::)     he he he...running away quickly!! Joe

Dont just run Joe...better get on your bike!!! :)

Thank you everyone for the warm welcome! Jess is my internet persona, I use it so I can post and get involved in what I want without worrying if an HR manager is snooping around on an internet search engine using my given name ... even though they aren’t supposed to … but I digress. My given name is Tim; call me whatever is easiest …

[“His father going outside with a drink is a big NO-NO around here as alcohol is a definite trigger and no doubt it made his headaches much worse, so tell HIM not to drink when he's in cycle.”]
Thanks, Linda. Actually, his dad passed a few years back, it wasn't related to the headaches. We found out about his dads headaches from my sis-in-law and my guy isn’t a drinker so we’ve got that covered.
["regime of a preventative like Verapamil and Lithium"]
Those haven't been suggested as yet, but we have seen an Chinese Medicine Specialist and found that to be helpful. As a matter of fact, I've got to stop in this Saturday and get a refill of the herb capsules and these seeds he tacked to my guys earlobe to squeeze when the pain hits. It worked very well the last round.

[“If you have the option, suggest you find a headache specialist.”]
Thank you, Bob. We do have a headache specialist on our team. Although, I’m going to scan through those links you provided to see if he is on any of those lists. We were referred to him by the duty physician at our urgent clinic.

[“O2, Monster, trex or migranal...”]
Thanks, Lance. What is it about Monster?
["If you can, get your husband to sign up and talk with us as well."]
I think he's said he did register, but I don't recall him mentioning what log in name he used.

[“An educated CH'er hurts a lot less.”]
Thanks, Joe. It has been “easier” to deal since we know what we were up against.
[“learn to be an aggressive advocate for your partner.”]
Not a problem there. We’ve pretty much gotten the routine down. I hear him moan and ask, “another one?” The yes answer and I’m up and running. Got the ice pack, get the Reiki flowing (I’m a practitioner) and turn on the TV for distraction. (He prefers to give it a few minutes to see if it will pass on its own before taking the Imitrex since the insurance limits the number of tabs we can get per month.)

[“Most of us here like to be left along during the attacks.”]
Thanks for the insight, Bob. He actually wants us (the cat and me) at his side with the Reiki flowing like I mentioned earlier.