Hello new friends.

I've been on the site a couple times over the years, but given my recent bouts I thought it would be best to jump in. Here's my story:

I'm a 33 year-old male living in California, and I have been coping with CHs since 2008. I first experienced them about two weeks after I had lasik eye surgery. I first thought these horrible headaches were a problem with the procedure. I thought they were migraines, and at one point was consuming mass amounts of caffeine to cope (I later realized that my belief of caffeine's effect was based on a coincidence of a CH simply ending).

Eventually I met with my doctor, who believed my ailment to be CH syndrome. She prescribed verapamil and Imitrex spray for controlling the attacks. Within a week, the verapamil seemed to do the trick (Imitrex was wonderful when needed), and kept them at bay for over three years. I began with 240mg per day, then tapered to 120mg after about a month. Over the next couple years, I had two lapses of 1 - 2 headaches, but only when I went off of my routine and missed my verapamil doses. I am in full awareness that I am more fortunate than many for such good results, and for that I am thankful.

Skip ahead to present. About a month ago I was assigned to work graveyard for the first time in my life. The sleep adjustment took a bit (to be expected), but it certainly caused a disruption in my internal clock - and my verapamil routine! I have since paid the price. I have had many lapses since then and have seen no sign of relief, as the verapamil isn't doing much (despite upping back to 240mg), and my fresh batch of imitation Imitrex doesn't seem to help anymore. Can it be that the brand name is that much more effective?

I am currently looking for a way to break this current cycle and I am hopeful that the verapamil will keep them at bay for a while longer once I do. I must believe that to be possible! I have an appointment with a doctor today, so I am curious what they will say. I will also seek a referral to a neurologist.

I wish I knew what triggered my latest cycle, whether the disruption of verapamil, the new sleep schedule, both, or perhaps a coincidence and it was simply "my time."

I thought I would also share a couple other thoughts to which people may be familiar.

At first, I was hesitant to really get into this site. Simply put, reading about CH validates their existence, and sometimes ignorance is bliss.  ::)  I genuinely thought that I had beaten this beast, and that a simple pill a day will keep them away - forever. I am a little disheartened to read that every cycle is different, and that I may be searching for new treatments with other cycles for a long, long time.   :'(

I also believed that I was only biding my time, and that they would go away on their own in several years. Anything is possible, I suppose, but now that seems to be a pipe dream.

In this time in my life, I find it very difficult to stay positive. I know that may come across as crass to others who suffer much more than I do, and for that I apologize. But even you must know that a single experience is one too many. I feel like they control me -- at least right now. I fear sleep, and find that the anxiety I endure is physically and emotionally draining. I have a 4 month-old son, and I pray that he will not inherit this pain.

So there you have it. I will no longer live in denial and will do my best to tackle this disease. I thank everyone for what they have shared to this point. I will learn to cope and look forward to all of our helpful interactions in the future.

Hi and welcome

Your verapamil dose of 240mg a day is pretty low with most people needing 360-480mg a day, so you may be able to increase that but only do so under direction of your doctor.

Are you working with a headache specialist, not just a GP or a neuro? CHs are not exactly common and many doctors have very little experience of how to deal with them effectively.

It's probably not possible to know what brings on a new episode of CHs. Some people go years between them, others every spring or autumn (fall), others at random. So don't blame yourself for missing a dose of verapamil or a change in sleep patterns.

Don't be scared of visiting this forum in case it makes your CHs validated. Here you'll be able to learn a lot, lot more about them and how best to deal with them. It's knowledge that gives you power over them, taking control back of your life from CHs.

Everyone here either gets CHs or supports someone with them. So we totally understand what it's like to get them.

Have you tried using oxygen to abort CHs using a high flow rate (15lpm+) via a non-rebreather mask? This allows me to kill mine off in about 5-6 minutes, which is a life changer.

Although you've tried imitrex nasal spray, have you tried the injection version?

Keep reading and asking questions, people will try to answer any you have.

Welcome to the board Baker, at last, another "right coaster", these east coast weirdos tend to tilt the board a bit left at times, if you know what I mean. ;)

If you haven't tried oxygen yet, you should check it out.  Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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


I use the imitrex injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. I never tried the nasal sprays but they work for many on the board.

Go to the medications section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these. Since you're on verapamil, don't go overboard with these as the taurine and verapamil don't play well together in excess.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board. I was a lurker for many years, only coming by on cycle. I was convinced not thinking about them would prevent another cycle from starting. (Oh shut up all of you, you've all been there and you know it! ;D)  It is tough how the beast keeps morphing, every time you think you have him all figured out and under control, he completely changes on you. So the more plan B's, C's and D's you have up your sleeve, the better!

Glad you found us.

Joe

Since you are here, we'll assume you have overcome your "bliss" period and are seriously seeking. <bg>

Verap dose is rather too low. Print this protocol out and use it to discuss some changes with your doc.
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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    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. (Headache 2004;44:1013-1018).

=======================================
SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.
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Ditto for the PDF file, below. Time for a new review of your treatment plan, which may include changing to a headache specialist if your present doc doesn't have a solid background in treating headache.

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When you say "imitation imitrex," what do you mean? lance

I used to get brand name Imitrex, but recently my coverage by default uses generic sumatriptan, which doesn't seem to work for me. It seems as though the company line is that the generic works just as well as the original, but that hasn't been the case for me (and some others as well, according to doctor honesty). As of yesterday, I was able to finally receive Imitrex again, after special order. I was also able to get o2 at home as well, so I must admit I feel better prepared for attacks.

A couple notes to pass along from my neurologist, fo whatever they are worth. First, I was told that anything above 360mg of verapamil has not been shown to be effective. Also, she debunked the mass water theory, saying that regular hydration is important, but that she does not believe great volumes will be any more effective. As you can see, she is pretty conservative.

I'm not one to knock doc's at all, but she's off base on the verapamil and on the water. There are members on this board who had to go as high as 960 mg a day to get relief when lower doses of verapamil did nothing. Members have posted that the water-water-water really helped ease their cycles. So many responded that we made it one of our permanent "left side tabs"  Maybe give her this web site so she can read up on what's working for people on the board.

That being said, it sounds like she is taking good care of you, that's what really matters. ;)  I do not say ANY of this to knock her as a neuro, she just does not have the facts straight on these two issues.

Joe

Baker78 wrote on Dec 30^th, 2011 at 10:02pm:

I used to get brand name Imitrex, but recently my coverage by default uses generic sumatriptan, which doesn't seem to work for me. It seems as though the company line is that the generic works just as well as the original, but that hasn't been the case for me (and some others as well, according to doctor honesty). As of yesterday, I was able to finally receive Imitrex again, after special order. I was also able to get o2 at home as well, so I must admit I feel better prepared for attacks. A couple notes to pass along from my neurologist, fo whatever they are worth. First, I was told that anything above 360mg of verapamil has not been shown to be effective. Also, she debunked the mass water theory, saying that regular hydration is important, but that she does not believe great volumes will be any more effective. As you can see, she is pretty conservative.

Pretty conservative is an understatement.  I say she is ignorant on the treatment for CH's.  This is not surprising as many of us have to be a self advocate and actually educate our neurologists because they are misinformed, only remember old literature, etc.  This is not a common headache disorder, thus minimal time/effort involved to keep updated on evolving effective treatment.

Knowledge is Power and you will most likely need to eduate your neurologist from the best CH resource available, right here at your fingertips. ;)

See a thread titled "Verapamil Dosage" under the board Medications, Treatments, etc.

You will find some of the most recent posts on this thread "Verapamil Dosage" to include neurological literature supporting higher Verapamil dosages, including personal experiences from me and others regarding Verapamil.

"Water, water, water"....very helpful for many w/ CH's, and can't harm you that's for sure!

In my first reply to you I included a PDF file at the bottom of the page. Urge you to print out the entire article and give to your doc. It shows that the evidence for high dose Verap. is "A" graded = well established.

Rather than trying to get her to come and read at this site, giving her an article from a medical source which is well known is a more effective way to get good data to her eyes.

Ultimately, you will need to decide whether you can be comfortable with a doc whose knowledge of Cluster is constricted. (We have reports of just how little education/experience neurologists have in treating complex headche disorders. The issue is broader than one doc. So, if you have the option:

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.