Hello.  I do not suffer from ch, but my husband does.  I have been reading here for a few weeks now and want to thank you for all the information here.

Pete is 53 years old.  He has been a heavy smoker since his early teens and he has been a beer drinker daily for several years.  He is 5’7” and weighs 130 pounds.

His history.  This is his second cycle.  The first started in the fall of 2006 and lasted until February 2007.  We’re kind of hazy on the details, but the headaches probably weren’t as severe as they are this round or we would remember better.  We knew they were cluster headaches then because his father had been diagnosed with them over 20 years ago.  Bottom line, his father just suffered through them so we didn’t learn much about the ch’s.  Pete wasn’t diagnosed with ch’s, but he did see a neurologist towards the end of the cycle and did get an MRI that ruled out tumors, etc.  He was prescribed a nerve blocker, but we really don’t remember him taking it for very long.  Looking back, we think it was just the end of his cycle.

This cycle started the beginning of February, but he didn’t recognize it or chose not to.  He’s got to be in really bad shape before he’ll go to a dr.  For the first couple of weeks it was heavy shadows or low level ha’s that he took Excedrin for.  He was living with it and I didn’t even know it was going on.  UNTIL he came home from work one night and popped his usual beer.  Major ha!  The worst of it lasted probably 45 minutes.  Shadows the next day, home again and popped open a beer.  SSDD!  Third times a charm and he realized his beer drinking days were over.  Quit drinking, but the headaches were getting more severe and more frequent. 

First dr’s visit was 2-23.  He was diagnosed with cluster ha’s.  He was prescribed Midrin Caps for pain and Topomax 50mg, twice a day.  No help there.

Next visit was 3-1.  He was prescribed a Medrol Dose Pak, hydrocodone and continues with the Topomax.  He started taking the hydrocodone every four hours hoping to help with the pain because he wasn’t getting any relief if he waited for the pain to hit. 

His next dr visit was. 3-5. He was basically pf for 2 days and then he got hit again, this time about one hour after taking the hydrocodone as a preventative.  Got into the dr that afternoon.  By this time I had found this site and had been reading as much as I could.  I went with him this time.  The dr put the higher doses of prednisone together with the pf days and prescribed prednisone 20mg 3x for 3 days, tapering off so he would be off of it on day 12.  He also started him on 10mg Inderal 2x and started tapering him off of Topmax.  I knew from reading that the Topmax wasn’t really given a fair shot, but I was concerned about the “stupid” side effects.  He was kind of “out of it” and twice really abused his meds while having an attack.  I know Inderal is not the first choice, but this dr (his GP) is really concerned with side effects and wanted to go this route.  He wouldn’t prescribe Imitrex for the same reason.  BUT, he did prescribe O2!  The prescription wasn’t what I had read about, but I also read the important thing was to get the prescription and modify it from there.  Surprisingly the 7 lpm for 8 minutes from the machine that doesn’t produce 100% O2 worked.  It continues to work, but I have all the information we need to modify it if we need to.  He does have a tank for mobility and that is where we would start.  So he now has an abortive that is working and was doing fairly well until day 11 of the Prednisone prescription.  He had 6 attacks in one day vs the one or two he was having right after he went to bed.  Thankfully that has been his worst day.  He has shadows and his worst pain has been 4 or 5 with the O2, but more like 1 or 2 times a day..

The visit he had on 3-17 was an appointment scheduled for 2 weeks out from the last visit.  He increased the Inderal to 10mg 3x to finish this prescription and wrote the next one for 20mg 2x.

He got a head cold a couple of days ago which is complicating things, but bottom line, the O2 aborts and he is “only” getting a couple of hits a day.  The only meds he is on is the Inderal and the O2 to abort.

He has an appointment with a neurologist next Wednesday. Pete is not much of a reader and virtually never uses a computer so I am the researcher, but he is involved in his care.  He is keeping a diary and we realize how important this is. We're taking all I’ve read to heart and this will basically be an interview from our standpoint.  If we don’t like what we hear we will ask for another referral.  Wish us luck that this guy knows his stuff or is at least willing to listen.

Megan

Pete is very lucky to have you! Although you guys were off to a slightly bumpy start you seem to have gotten your arsenal together very quickly.

I am sure he has learned now that alcohol is a big no no during episodes for virtually all of us.

Great to hear that you are already set up with O2 and ready to up the flow rate "caliber" if you have to.

Topamax (as many other prevents) takes time to take effect. An alternative or combo you may wish to discuss with your Neuro is Verapamil, which seems to also help many around here.

Many Neurologists are only trained on mainstream treatments and dont understand the complexities of CH. You seem well prepared for your appointment and should you not get the answers you are looking for, on the left of this page you can find headache specialists in your area via the Ouch website.

Thanks for the replies.  I know we are positioned as good as we are because of this site.  I can't don't even want to imagine where we would be without it.

His GP is very cautious about high doses and the Imitrex and Verapamil.  He's afraid that they would cause a heart attack.

At this point he's sitting in a pretty good place.  Down to one hit a day - right after he falls asleep - and the O2 is doing a good job of aborting.

I'm most interested in the Imitrex at this point so he has a little more freedom.  Pete is a very outdoors type person and he can only take an O2 tank so far.  Other than a couple of weeks in the beginning when he was totally zapped, his outlook has been good.  I'm just afraid that if this interferes with his lifestyle too much for too long that he would get down.  O2 would continue to be the first choice to abort.

You didn't mention any existing medical problems which restrict the Imitrex use and of other meds.

If there are such issues then disregard what follows.

Your docs low dosing of pred, Imitrex, and Verapamil is NOT supported by clinical research on these meds. I suspect that the long haul pix is not encouraginig on this count AND the use of pain meds signals a doc whose intentions are good but he lacks the degree of knowledge and experience needed.

Two options: the drive to Tulsa is a nuisance but if you could locate a headache specialist there your changes of a good outcome would in increased.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Look for "Physician Finder" search box.  Call 1-800-643-5552; 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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If this move isn't possible AND you can be assertive AND your doc is an open/receiving type, we can dump loads of MEDICAL information on the dosing and safety of the meds your husband needs.

To give you an idea of what is available (and it will give you some awareness is what is needed) print out the whole file, following, AND the PDF file noted at the bottom of this message.
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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]

And PDF below:

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And see my msg in the Medications section under the message, "sumatriptan injection...."

Sent an e-mail to you.