Hello fellow cursed ones. Its that time of year again. The time that my very hatefull beast friend comes to visit. Its been about 2 years since my last full on head banging "10". And to think I actually thought 480mg of verapamil a day and gallons of Monster energy drink were actually working. Ive finally come to the realization that nothing will prevent them for me. Everytime I think to myself "oh my God! this pain is worse than ever before. I must be having a stroke or hemmorage" only to find out 24 hours later that my beast friend is still mad at me for a reason unknown to me. I dont get any relief from the beatings because the fear of the next one is almost as bad as the pain itself. No sleep thanks to my unruly guest once hes happy with the pain he has instilled in me I spend the rest of my time doing what my doctors need to spend more time doing, researching and trying to pinpoint something in my life that may have caused this. My doctor always tries to reassure me that he understands clusters yet the next time i see him he says "how are the migraines?" I dont know about you guys but I get offended by this and usually go on to the next doctor. Everyone wants to do the same things over and over again ( Cat scan,Mri, narcotic pain killers , muscle relaxers, sinus medicine, antihistimine...etc. My last doctor told my wife after i quit going to him that I just have a very low pain threshold....LMFAO.

Anyway if you actually took the time to read my seemingly endless rant, I feel very sorry for you and know exactly what your going through.

Thanks,

Chad

Well, welcome to the family.  And as they say, "Family is like pralines; it takes a lot of sugar to hold all the nuts together."  ;D

I GUARANTEE no one here will ask you about your migraines!! HAHAHAA...what a jackass!!!  (that doctor, not you!!)

I hope you find a lot of support and information here!

-Paige

Oh stop your whining for heavens sake it's just a headache! ;)

Yeah, we hear it all don't we? You didn't mention oxygen! While it doesn't cure CH, I can abort an attack in as little as 6 minutes just huffing the 02. It's cheap, no side effects and it's given a lot of us our lives back. Read the links on 02 and talk to your doc. It's cheap and certainly worth a try.

Welcome back, sorry the beast never seems to lose your address!

Joe

thanks for the replies you two. And tomorrow I am going to try again to get oxygen from my doctor if I can get in. If not I dont know what im going to do. I had to slams 5 hours apart at work today. :'(  Which has been my biggest fear for the past 7 years.

Chad,

Print out the O2 info from the left menu button and present it to your doctor. Also read the O2 posts from Chuck to get familiarized with the terms and equipment used in O2 therapy. Make sure you get the right NR mask and at least a 15LPM flow regulator, 25LPM if you can get it.

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Best,

Roland. ;)

Hey Chad... Its all good!!! Get some 02 now!!! dont sit here and ask why and how for 3 days, Just get it now!! NON- REBREATHER MASK. HIGH FLOW RATE 12-15LPM.  Cluster freedom (for most) in less than 5 mins. Coach Bill

+1 on the Oxygen advice.  I'm one of the 70% of us it works for.  If you use it right and quickly it can abort an attack quickly and before it goes full blow on you.

On the prevent front, sustained release Verapamil didn't work very well for me.  Bob Johnson posted this info a while back and it turned out to be my magic bullet.  Take this to your Dr and discuss it with him.

I remember the fear.  Now that I have tools that work I'm more pissed when he comes to visit.  I hope you find your magic combination soon.

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Quote:

Brief Communication Individualizing Treatment With Verapamil for Cluster Headache Patients Joseph N. Blau, MD, FRCP; Hans O. Engel, FFOM, LRCP&SE Address all correspondence to Joseph N. Blau, MD, FRCP, City of London Migraine Clinic, 22 Charterhouse Square, London EC1M 6DX, UK. From the City of London Migraine Clinic. Copyright 2004 By the American Headache Society KEYWORDS cluster headache • treatment • verapamil (Headache 2004;44:1013-1018) ABSTRACT Background.—Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses—720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.—To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.—Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.—Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy—lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.—Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. -------------------------------------------------------------------------------- Accepted for publication July 19, 2004. DIGITAL OBJECT IDENTIFIER (DOI) 10.1111/j.1526-4610.2004.04196.x About DOI

-Dennis-

Thanks again for the replies. Unfortunately no Doctor is willing to get me some O2. I Finally got ahold of my Dr. today at his home and he suggested going to the ER and asking them for High FLow o2. Otherwise he would like to bring in some literature showing this works. After hanging up I called an old Doctor of mine who gave me the Verapamil and he said that O2 is an experimental procedure and he would have nothing to do with it but if I could find someone who does deal with it he would be happy to give me a referral. In the mean time he gave a script for imitrex injections. So hopefully I will have some relief. I had to leave work yesturday right after my shift started due to a kip8. My boss kept insisting on him taking me to the ER but I dont know about everyone else but I cant stand being around people I know while Im being hit let alone a hospital where they will probably restrict me from beating myself in the head and pacing freely throughout the facility. Anyway I cant find any info on the left of the screen about O2 other than the store link. I would really like to have some more info for my current doctor to go over. Because even though he doesnt quite understand the monster he does understand Im in pain and is willing to at least give some things a try.