My name is Lori and I am a 39 year old female from Hamilton, Ohio. My doctor told me I was suffering from cluster headaches in June of 1995 I was was 22 years old. I had them for around four years or so and then they just disappeared or so I thought, they returned about a year ago with a vengeance and they are way worse than first time around. I feel like I am losing my mind! I am on Verapamil and just upped my dose, but just reading all your posts have made me feel better as I personally do not know anyone else who has these.

Kevin,

I take Verapamil for preventive medicine, they have given me Vicodin for pain but it does not seem to really help much and I really do not like to take them. I had done some research online before I stumble across this site and was looking for a natural alternative and ran across liquid chlorophyll (sp.?) which made sense to me as it has something to do with the way plants make oxygen. I have only been trying that for about a week so no way to tell yet if it is working or not.

Good to know about the Vicodin, makes me question why they would even give me that for the pain. I see everyone saying the oxygen is the way to go, but seems like it might be complicated to use, is it? I am not the most mechanically inclined person and could see me not using it correctly..lol

Rather than wandering around looking for someone to tell you to: "try this, try that":

1. find a headache specialist who knows how to treat this complex disorder. Being given a pain med is evidence that the doc knows zip!
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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. 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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2. Get up to date on what is available since you were last dealing with Cluster. The PDF file, below, while written for doc, will give you current thinking on what works. Suggest you print it out and use it with any doc you see as a tool to discuss treatment options.

3.
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]

Usually, to keep things in check I'll need verapamil in the 360 -480mg/day range.  When I've been at 360mg/day and I'm in a more active time, it's like I'm not using any prevent at all, I'm getting hit constantly.  In the move up to 480, it will suddenly make a world of difference - full night's sleep and unbothered days.

You're being at 240mg/day now is what I can use in my most inactive times being chronic.  Using none at all I'll get hit frequently, but the 240 can manage them.  Activity can change though and sometimes quickly.  A move up to 360 will sometimes still do no good and it is soon apparent 480 is needed.   Things will then settle down again later.  I lower it again when I can.

Quote:


Using verap at 240 would not be helping me whatsoever right now either, and it's improbable for me to have a prevent that works at a constant level for even four months, it needs changing with activity levels.  Presently 480 is holding okay for me.  I was at 240 not long ago and ran through a dozen E tanks so quick I ran out Sunday, called Monday for delivery 2pm Tuesday.  On no sleep and apprehensively loaded with caffeine.  Just my luck the verap kicked in by then and I haven't even used the oxygen yet.  A huge difference of night and day.

Abortives are important because activity is constantly changing.  Oxygen is very much a necessity.  Going from 240 to 480 takes time while getting hit about 6 times/24hrs. 

While at work, there is a certain busy activity and stress level going, so a Red Bull or a double espresso can help.  At night though, waking from a lazy sleep, energy drinks and espresso are not adequate at aborting.  I have to double the energy drink total to even get it down to a K7 after 30 minutes before slowly dropping further.  Whew, walking, standing, sitting, up, down, all-around -- there is no position that does not drive me crazy.

And whereas energy drinks and espresso can last longer during an active and stressed day, at night I'm hit again in less than two hours because they just don't seem to completely rid the attack sufficiently.  This goes on during the day too and the caffeine makes me more apprehensive, less able to concentrate.  All around making the whole situation worse.

I'm just depicting a scenario of how not having an adequate abortive makes the cluster experience such a crazy cycle, but with proper preventive levels and ready abortives, it can be managed. 

Oxygen will work in much less time, the crazy high kips can be held to 7.5 or so very shortly before they subside within ten minutes.  This is tolerable, even if it's several times a night until I can get the verap right again. Frequently enduring the higher Kips for longer time with no abortive is a situation that needs to change.  There is NOTHING more important in the world than having an abortive with the high Kips.

Quote:


This should have been assigned outright, and with your preventive med not effective, the first thought your neuro should have addressed.  Be certain to relate the extent of pain you are going through while your preventive meds are in need of adjustment and that you require something that can abort the repetitive extent of pain you withstand on a constant basis.  Imitrex injections, nasal spray, or an oxygen script are absolutely necessary.

There are some here with their own great set-ups using welding O2, so inquire if you need.

Lots of good luck to you.    

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).

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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.

wimsey1 wrote on Nov 1^st, 2012 at 10:02am:


Bob Johnson wrote on Oct 31^st, 2012 at 7:12am:


Lance and Bob are correct.  This is like going to an exterminator because you have mice.  Instead admitting they don't have experience to know what to do, he hands you a hammer and a piece of cheese.  "He goes for the cheese, you hit 'em."  You might figure they should know, so you trust them, but they don't.


"This isn't working so great."

"Here's a bigger piece of cheese."


We have to know the basic absolutes of our needs with this, preventives and abortives, and recognize quickly at our own consequence, how elusive a doctor has been making this to be.

Glad you're getting a handle on the beasty, give you a little more time with the kids! Wishing you a long remission!

Joe