First and foremost I am so grateful to have found this board and site.  The information I have read and studied through here has helped to lessen the some of the anxiety and give me hope I can battle this monster.
Im a 40 yr old male. I live in Atlanta Ga.  This all began for me approx 5 weeks ago when I started getting this pain every night around 11pm.  I tried the usual OTC suspects but it never really did any good.  The headaches continued building in intensity and frequency over the next week and I began to wonder if me using new workout supplements
( L- Arginine, Creatine) was the cause. So i abruptly stopped them hoping it would resolve the headaches.  Unfortunately it didnt! But im still not convinced it didnt cause or at the very least make it worse.  I was rotating taking Aleve, Advil, Excedrin Migraine to deal with the increasing hits. Still to no avail.  Now  on top of all the headaches my stomach was killing me.  Time to do something! Called my primary and made an appt.  He said he thought migraines and prescribed Imitrex 100 mg tab.  Got my usual headache right before bed and took the Imitrex.  It knocked out the pain, but only 1 hour after it began :-/ 
Went to sleep and was awoken 4 hrs later with an even worse one.  Took another Imitrex and waited for it to kick in.
Awoke the next day feeling exhausted to say the least and had this tenderness/irritation in my left eye ( afterburn... as I later learned) all day long.  Went to work that day, hoping I could get through work without another headache, but halfway through my shift was really hurting.  Took Imitrex at work.. bad idea!  I work in high paced fine dining restaurant and need to be on point at all times.  I was dropping things, my arms felt like they weighed 100lbs, the pressure on my chest was more than uncomfortable, and I generally felt looped!  I was really thinking this isnt going to work, the Imitrex got rid of the headache but put me in no condition to work.  Had to leave early that night, went home feeling like crap just praying for a good nights sleep.  Of course that didnt happen,  awoken again 4 am with a "killer".  Took another Imitrex and fell to sleep exhausted and wondering when this would all end.  The next day was a Friday and my mind was driving me crazy with anxiety awaiting the next headache, also I was worried that the doc only gave me 10 Imitrex pills and no refills... what was I going to do if these didnt go away before the meds ran out over the weekend.  Of course they did run out on Saturday night and i had the worst pain ever in my life!   Called Primary Monday morning explained the situation.. he recommended Neuro appt and refilled Imitrex.  Called the Neuro, was able to get in a week later.  Went to pick up Imitrex refill.  "Im sorry Mr...., but your insurance co will only let you get 10 pills a month"  Youve got to be kidding me was my first thought and my second was I dont care what it costs! I need to have this.. so $170 later i left the pharmacy.   Now with 10 Imitrex pills in hand and 5 days till Neuro appt I came home and began to do some research on what was really wrong with me.
Thank God I have found this site! I read the stories of how other people had suffered with this monster.  I went through and took the quiz.  Everything I had matched exactly!   Now i know what it is!  Cluster headaches!  Most inadequate name for this thing ever! Went to Neuro appt.. couldnt wait to get there really, I already knew what it was but I went in without telling the doc.  Answered all his questions, went through his exam and awaited his answer.  I believe you have whats called Cluster headaches he says. Now while I mentioned that I found this site and board prior to my first appt with my neuro, I hadnt fully studied all my options here and went along with his treatment plan. He mentioned Oxygen therapy but in the end. H prescibed Prednisone 60 mg taper,  Verapamil ER 120 mg daily increasing to 240 mg/day.  Cafergot as needed.
I have now been on this for 6 days, and until today have been totally pain free with just a little bit very minor shadows.  Although they have increased a little today I believe due to going from 60 to 40 mg on the Predinisone. I expect this will continue as I taper down through day 12 of the steroids.  Im scheduled for a follow up with Neuro next month, but thankfully with all that I have learned from this site will be calling Dr. in the morning to get the O2 immediately!!  Switch to Verap regular,  and get Imitrex injection!  I cannot begin to express with enough thanks and gratitude what I have learned here.( and I know I have only scratched the surface)  I wish you all many PF days ahead and will keep you posted with my experience in the coming days.

Sorry to see the beast has selected you, but GLAD to see that you are learning quick!

I think you'll find the info you've found here and will be putting into practice will make a huge difference. :)

You've done well!  Yes, Cluster Headaches is the most inappropriate name, ever. And you have discovered what most of us have experienced...the prednisone taper is great at the higher levels, and serves as an intermediate while the longer lasting preventatives kick in, but the hits keep comin' soon as we get to the lower doses.

The verapamil is a good start. Even at 240mg/day it is a low dose. I'm on 640/day and some are even higher. Not saying you will have to go that high. I am saying not all Drs are aware of how high we need to go with abortives and preventatives. Other examples of going beyond normal Rx or usage rates: melatonin up to 18mg/day, O2 at 25+lpm, or lithium up to 1000mg/day.  Hopefully you will find an effective threshhold below any of these numbers.

Also, while I am in the minority here, I use both imitrex shots and Migranal nasal spray, although not within 24 hours of each other. The Migranal is more effective for me for a longer period of time, but takes longer to take effect. Also, it doesn't have the same side effects for me as does imitrex.  Trex, on the other hand, works faster but not as long.  Just something to consider and research.

Get the O2, Large (M tank) and portable (E tank, although tank designations can vary) and learn to love it. It will ease the pain and abort the hits better than anything in the world. Need a full nonrebreather mask, and high flow regulator, and breathing that will support hypoxia...put it all together and voila! Blessed relief.

Glad you're here. Good luck, and God bless. lance

Welcome to the board, a neuro who recognizes CH and seems to have a good idea on treatments, you are truly a fortunate man. (CH not withstanding. ;))

The verapamil dosing is low, some go as high as 960 a day to get relief but do not alter dosing without working closely with neuro as that is a high horsepower med. Some go to a combo of lithium and verapamil to get relief when one or the other doesn't work as a prevent. Cafergot is a very old school med, we don't see it prescibed much anymore as imitrex injectors or nasal spray, and oxygen, work so much better and faster.

Prednisone is a 100% block for me, but as I come off it, the beast comes right back. Do get the 02 filled immediately as when you come off the pred it's not unusual for the beast to come roaring back with a vengeance. I kill my attacks in 6-8 minutes with the oxygen. If you haven't already done so, read this link.

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It will spell out the details of how to correctly use oxygen. The keys, high flow rate, at least 15 LPM, preferably as high as 25 LPM, a non re breather mask, and get on it as soon as you feel the beast knocking.

Keep reading. Check out this link:
Under "Medications, treatments and therapies"

123 pain free days and i think I know why.

It's in the meds section, one of our serious research types has stumbled on a daily supplement regimen that's reducing pain for a lot of the board members. Certainly worth a quick read. Glad you found us, hope we can help you.

Joe

  Hi & Welcome to Clusterville

    By all means, get your 02 setup ASAP.  Make sure and order an Op2mask (links on the site . . $27.50) . . a vast improvement over the non-rebreather masks the med supply company will provide . . . designed especially for clusterheads.  You may have to pay cash, as most insurance companies won't pay for it .. . but 02 is CHEAP, even if you have to pay cash.  I pay $10 per "E" tank, no deposit, no monthly fee, no limit on tanks (I keep 20) . . . but rates vary across the country, so call your local med suppliers and ask what their CASH price is for 02.

  When I came here 2/02, was having multiple daily/nightly hits.  With info from this site, went to doc and got script for Verapamil & 02.  Wanted Imitrex, but due to some heart issues (some artery blockage and high cholesterol), he (correctly) refused.

  I mention the above because you said you had some chest pains.  Have you had a cholesterol screen or stress test?  I mention this because Imitrex is a MAJOR vaso-constrictor, and if you do have blockage or cholesterol problems, can be very dangerous . . . no such problems with 02.

  I started my Verap at 120, had my first PF day (in over a year) when I got to 240 mg (had 3 attacks that night, but had 02 to kill them . . . it was a WONDERFUL day), got as high as 480 mg, then back to 360 mg maintenance dose.  (As you up the Verap dosage, don't be surprised if you have some constipation . . . many do . . I did . .  easily corrected with diet change or stool softeners)

  Have been using water therapy (see "water X 3" . . link on left) as preventive since 5/04, and 02 as abortive.  Started D3 regimen 16 months ago and have been (mostly) PF . . . haven't had a real "dance" with the beast in over a year).  My hits are now low level (Kip 2-3s), easily knocked out with 02 in a few minutes.

  GET THE SCRIPT FOR 02.  And if you do have to pay cash, order your regulator from ebay (will be MUCH cheaper) and make sure and get an Op2mask.

   Be Safe,    PFDANs

     (mostly PF)  Richard

P.S.   Is the Chateau Fleur de Lis still operating in Atlanta (Buckhead) . . . very "high-end" restaurant in the late 60's, early 70's.

Thank you all for your responses.  I have been off the Prednisone now for 5 days.. have had a few attacks mostly mild.  Thinking the Verap is working.  Got my oxygen filled today, and took the E tank to work with me.  Started to get a real doozy around 6pm.  Went to the car and hit the 02 at 15lpm for 10-12 min.. Beat the Beast!  Felt great the rest of the night.  I have just reg nose canula mask that came with the tanks, but will be ordering the Optimask ASAP.  Also the higher regulator.  Thanks so much to everyone!  I hope many PF days ahead for all!!  And i do apologize for the extremely long first post.

Quote:

Started to get a real doozy around 6pm.  Went to the car and hit the 02 at 15lpm for 10-12 min.. Beat the Beast!

Hah! That's what we want to hear!  Good for you, and you'll love the more effective mask. Keep us posted. God bless. lance

In Atlanta you will have no problem fnding a headache specialist--good move for the current neuro is being so cautious that I suspect his skills in treat Cluster are limited.

Imitrex pill is too slow for most of us; injection fastest.

The PDF file will give you an overview of treatment meds.
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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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Well after nearly a 4 year hiatus the beast is back >: Have had 4-6 attacks a day that are increasing in severity over the last 3 days. Unfortunately no oxygen on hand, but was able to beg the Neurologist to get me in for an appt tomorrow morning. Now just trying get my employer to understand what Im going through...got the usual response "yeah Ive had migraines too"  [smiley=argue.gif]

Hi there,

You have probably seen this before, but if not, it might help.

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

Best wishes,

Peter.

Yes, I looked it up here and sent it to my HR and boss.  Thank you Peter.