I'm George in New Haven, a CH sufferer for 20 years, 6 weeks into the first cycle in 4 years and coming off the third Kip 10 tonight.  This has been the worst that I've ever experienced.  I found this site Saturday after a brutal night of non-stop lightning.  It was the first time I've cried over this, which just totally sucked.  I'm not a macho type of guy; I can tolerate some pain, but I'm hitting the wall (head-first splatter might be the more appropriate metaphor).  I've been having all-day heavy shadows and almost constant phantom headaches (at least I have a name for these phenomena - thanks; naming it helps) for the past 4 days, 2-3 blistering headaches a night with absolutely exquisite pain, complete with little convulsions every time that white-hot needle stab-stab-stabs through my right eye.  I've been delaying my first post here for some reason, but I had to do it this morning.  It's 3:15 and in a little over 3 hours I've got to put on a tie and stand in front 26 17-year-olds.  Thank God I've got good classes; I'm not doing a very good job of being a teacher right now.  I'm not a being a very good husband or father, either.  I'm grateful for a patient, loving wife.  I might lose my f-ing mind without her.  I was about to apologize for whining, an instinctual response, but I've read some of your posts and have seen a lot of empathy here.  Thanks for induling me in this bit of therapy.  The O2 - my new personal savior - has worked and I'm hoping the Zomig will keep this monster at the door for a while.  I'm relying on samples of Treximet, Imitrex and Zomig from my sister the nurse; Blue Cross once again has been kind enough to deny my neuro's appeal for more Imitrex.  Fingers crossed, back to bed.

Can't spend your life on abortives only. Getting a preventive med going is essential.

Do you have a good headache doc--NOT just any neurologist?
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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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Get up to date on treatments. See PDF file, below.
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Read the whole article:




 
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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As you have time, explore the buttons (left) starting with the OUCH site.

But the primary encouragement is to get moving on a preventive med....

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What Bob said! ;) With no preventative med in my system I'll get 2-3 hits a day and an occasional wake up hit to boot. I'd be spending a lot of time on my 02 tank.

A prevent med is one you take daily, while on cycle, to reduce the number and the intensity of your hits. Verapamil is one of the more common first try prevents, only at doses higher then people who use it for blood pressure control use it. Some go as high as 960 mg a day to get relief. Your Blood Pressure must be monitored on this one, as you go up in dosing, as dangerously low BP can occur.

I use Lithium as my prevent. At 1200 mg a day it'll block about 70% of my attacks, oxygen and the occasional imitrex shot will generally handle the rest. I was in law enforcement for 30 years. 1200 mg sounds like a high dose but is not. If I didn't tell you I was on it you'd never know. I could work at that dosing with no noticeable effects.

Topomax is another popular prevent but is nick named Dopey Max, as for many it has a troubling side effect of making you forgetful and goofy! :D Maybe not a good first round try for someone facing off against a bunch of hormone raging teen agers!

Welcome home. Read the oxygen info tab on the left and make sure you're using the oxygen as efficiently as possible to speed up the abort time. Consider adding daily magnesium, zinc, and Calcium with Vitamin D supplement to your diet. I am not competent to explain exactly how, but this modifies your arterial PH making you less succeptible to the attacks.

Joe

Good morning.  After calming the last attack I was able sleep until 10:30.  I knew at that 5:30 alarm there was no way I could function at work today.  Not necessarily refreshed but relieved. 

I've been taking a mix of prednisone and verapamil for two weeks now with apparently little result.  Maybe this cycle is peaking and this stuff will start working; in past cycles, after a week and a half or so and it would start to work.  I start the prednisone at 60 mg/day, stepping down 10 mgs after 5 days (currently down to 40).  I started the verapamil at 120 mg twice/day, but that was stepped up to 180 after a week.  On Monday my blood pressure was up to 140/98 (usually a nice even 120/70) so he upped it to 240 mgs twice a day.  For some reason my bp was up to 160/98 yesterday.  I guess I've got to ride this out for a day or so and see what happens.  Other than not getting any perceivable relief from this cocktail, the dizziness, forgetfulness, occassional slurry speech, excess urination, and intestinal traffic jam they cause are a blast.  Gotta remember to stand up slowly, too; I've blacked out for a few seconds standing up too quickly (including last Saturday while proctoring SATs; thank God I didn't fall down).

I've used the same doctor for some time, but maybe it's time to change.  I was supposed to have a nerve block injection in my spine yesterday to calm down a nerve pinched by a bulging disc (which actually feels pretty good, I assume from the anit-inflammatory effects of the steroid), but cancelled that for fear of triggering a headache.  There's  a guy in this other doctor's group who is a specialist in cerebrvascular disorders.  I wonder if I shouldn't contact him? 

Thanks for the suggestions.  I'll be sure to try the dietary suppliments.  I started taking 5 mgs melatonin last night and will continue to do so for a few days, then up it to 10.

Don't know if this has any significance, but my first attack last night occured around 11.  Prior to this I could set a clock for 10:15 for the first little stabs.  Still having phantoms, though.

Sadly, probably of no real significance. The beasts ability to morph is legendary. I went the first 20 years without ever having a wake up hit. Once I got to sleep I was safe. The night time terrors didn't start for me until I hit my 40's. He do like to keep mixing it up on you.

Joe

This beast is so dodgy that way isn't it? - sets you up with a regularly scheduled hits at a certain time, then without warning pulls the rug out and changes the game.

So when someone is on prednisone etc., using O2 and imitrex injections, and is still enjoying the lovely K10's, I'm of the mind that it might be time to cut a little of the toxic prventative drug BS here and become aware of the non toxic medicinal plant approach that so far appears to MORE EFFECTIVE than the drugs for many CHers. Not that all of us can find access to it though.

Yep this treatment for CH has been favorably covered recently in Newsweek, a National Geographic special, etc., and has related medical trials underway at Harvard Medical with some pretty stunning results from a preliminary trial. Some CHers have reported here and at clusterbusters.com  that they have shut down entire cycles.

All this from a tiny little mushroom with (unfortunately) a big public stigma. We're talking about a sub hallucinogenic dose of psilocybin here, and although it may seem like it, this not a hoax or a joke, as many chronic sufferers who have found relief can telll you. You might want to check out this video:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

...and join the discussion board on this topic over at clusterbusters.com: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

[Edit:] I don't mean to imply that anything Giussepi would say would in any way be BS - quite the opposite in fact, he's a very knowledgeable, reliable ally for anyone who comes on here, and his advice on O2, etc. in his post here is worth it's weight in gold  :)).

I wish I could get the Imitrex injections;t pills at the moment.  They don't kick in for some time but do seem to help stave off the rebound.  I didn't take anything but O2 and a Red Bull last night until the third hit.  I'd had enough at that point.  The injections work well when I can get the damn insurance company to pay for them.  The side effects are creepy, but I can put up with that.

I had read some of the mushroom info and am intrigued.  I'll have to investigate a bit more.  I'm guessing there aren't any legal means of distribution available around here.  Do they grow wild in northern climates I wonder?  I know a guy with a natural beef farm and I'd bet he'd let me wander the fields to investigate (I'm in CT).  I spend 3 weeks in VT during August and there are dairy farms galore.  If the stuff grows up there, I'd have plenty of areas to investigate.  I'm going to have to look into this further.  Thanks for the suggestions.

You know a guy with a wild beef farm???!! Oh man I would think that - especially at this time of year - you'd be in like Flynn.

If you haven't seen the "Extending your Imitrex"  tip yet, that's some critical info on how to dramatically stretch injection doses, reduce side effects, etc. that could really help you turn the corner. It certainly made all the difference for me - this is it:

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

you can also find information at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE on Rivea Corymbosa and Hawaiian Baby Wood-rose seeds as an alternative to the fungi. Good Luck.

David