hi, my name is jamie, i am 33 years old from nj and have been diagnosed with cluster headaches 2 years ago, my cycle lasted 2 months and was gone. for the past 2 years i have been praying that it wasnt clusters but low and behold they have returned. i am seeing a headache specialist neurologist but am getting very frustrated. i am using o2, verapamil, inderal, lorazapam, zomig and today had an occipital nerve block with no relief. i am going to start imitrex injections now, although in the past the imitrex has caused my heartrate to go down to 30 so my doctor has some worry about me using it.  at this point i dont really care about the risk, i just need these pains to stop.  i have already been on (and failed) treatment with lithium and topamax. i have tried accupuncture, magnetic therapy and meditation/ relaxation techniques but keep getting pounded by these headaches! if anyone has any other suggestions for treatment or how to keep my sanity, because i am losing it fast, please message me back., thank you so much for this site

Many here have seen great results when EVERYTHING else has failed.   Take some time and read...

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Several of us have had excellent results with this one. Print this out for your doc.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

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Might also ask your doc if he has considered looking at the possibility that you have a cluster-LIKE syndrome.


Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Are you using the O2 with a NON-REBREATHER mask with a bag on it, and a regulator that goes at least to 15lpm? Very few Doctors are aware of what we have learned about "Highflow O2".

To learn more about O2 for CH, pls read thru the following link.

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Learning about these things is something we must do ourselves, teaching our Doc's in many cases. Much learned here at CH.com, is not common medical knowledge. We're working on it.

Don

Don

Dose levels are another thing to keep in mind. While many tell us they have tried everything, what is often meant is they tried everything at too low a dosage. For example, O2 works best at flow rates upwards of 25lpm. Verapamil at dose levels up to 960mg/day. Melatonin anywhere from 6-18mg/night. All off label but still falling within the effective range for this beast.  We have also found slamming an energy drink (Red Bull, Monster, 5HR...) and jumping on the O2 immediately at the first sign of a hit has helped abort the attack. Ponder all you have been told here and above and let us know where you may fall in this continuum of treatment. Good luck, and God bless. lance

Glad to see you're working with a headache specialist, sorry you're not seeing any relief yet. Lance makes some great points. It's hard to move sowly when your head is exploding but it's critical to make sure a med is fully tried before we place it in the does not work file.

The oxygen is the best tool to help you manage while you're in the trial periods. Read the oxygen info link you were provided, the keys: High flow rate, at LEAST 15 preferably up to 25 LPM, a Non Re Breather Mask, re breathers and nasal canulas are generally not effective for CH'ers, and get on it at the first sign of an attack. My aborts run 6-8 minutes huffing 02. With a tool like this, it makes working thru the various treatment options a little more doable as you're not enduring hour long attacks with each med failure.

And do look at clusterbusters.com    not mainstream medicine but some of my closest friends on this board have stopped CH in its tracks using the "alternate" therapies when all else was failing.

Good luck, you're not alone anymore.

Joe

Thank you all so much for the info :) i did use the  imitrex injection yesterday and had no adverse reactions and very fast, complete resolution of pain. i had no headaches for the rest of the night either :) i do have a nonrebreather and my tank goes to 15LPM. my verapamil was increased yesterday to 360mg- does that sound like a good dose? please tell me more about the energy drink and melatonin, i have not heard of these as abortives before. THANKS AGAIN SOOO MUCH!!

Energy drinks containing caffiene and taurine, rock star monster etc., work as abortives for many when chugged at the first sign of an attack. You are taking verapamil, it sometimes causes issues with the taurine in the energy drinks which can cause heart issues. Given your history I would be really careful with using them.

The verapamil dose is still low. Some go as high as 960 a day to get relief. DO NOT adjust the dosing on your own as it's powerful stuff and given your past issues I am sure your doc is moving slowly and cautiously.

Melatonin is taken to prevent night time attacks. Start with 9 mg about 30 minutes before bedtime. many can avoid the wake up hits this way, not really an abortive.

Joe

This is the latest evaluation of the effectiveness of major Cluster meds.

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JamieNJ wrote on May 18^th, 2011 at 9:32am:

... i did use the  imitrex injection yesterday and had no adverse reactions and very fast, complete resolution of pain. i had no headaches for the rest of the night either :) ......

Well that's good to hear!

If you haven't seen it yet, this imitrex tip that details how to stretch your doses can be a lifesaver:
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Re. Verap. dosing: this is a widely used protocol. Print and give to 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).

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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.