Greetings to all,
I'm a new member and this is my first posting. I'm trilled to find this site and sincerely hoping to find some way to ease my pain. I've been suffering from this dreaded disease for almost 20 years. Because of my geographic location I never had the luxury of seeking true professional help however I finally discovered that I've been suffering from CH all these years. After taking tons of ibuprofen on daily bases my brother who lives in the US introduced me to CH.com and suggested that I should start verapamil and inject sumatripan when CH attack becomes unbearable. I did get on verap 240 mg yesterday but no relief so far. Today I had two shots of sumatripan and 320 mg of verap, the pain is still harsh and keeping me up.
I am DESPERATE and need some guidance as how to ease my pain. I'm going to try O2 tomorrow but don't know if it would change any.
Any advice and inputs will be greatly appreciated.
Thank you in advance!!!

Hi and welcome,

Please stop taking the ibuprofen.  It won't help at all and it will eat a hole in your stomach.

You say  that because of your geographic location you don't have the luxury of a good professional, but yet you don't say where you are at.  If you told us, maybe we could help.

Verapamil is a good preventative, but 240 mg. is way too low a dose, so I don't wonder why it wouldn't work.  Even if it was a higher dosage, it takes a while to work so one day is not a good barometer at all.

You say you are going to try 02 tomorrow.  GOOD!  it just happens to be our number abortive around here and it works.  Please read the yellow button to the left of here to make certain that you have a  regulator that goes high enough and a non-rebreather mask.

Linda

Hello Linda,
Thank you so much for the reply. I live in Iran, even though there are quite a few Neurologists yet after bunch of C-scans and MRI all sent me home without recognizing what I was suffering from. I guess I should have said there is no cluster headache specialists here rather than lack of neurologists. I do want to stop taking ibuprofen but the pain is so debilitating that I don't know what else to do. Would you or anyone here can tell me how much and in what frequencies I should raise Verapamil doses? BTW I am aware of its side effects and monitoring my BP and I read that EKG should be monitored as well. Any idea how often I need to get my EKG ? I tried not to take ibuprofen tonight and had two Sumatriptan injection but didn't get any relief so ended up taking the IB. Could this be psychological perhaps? My brother is so worried that I have been taking close to 100 ibuprofen for the last 15 years. He thinks my liver is going to give up on me, is there any truth to that?
I have never tried the O2 before and as mentioned in my previous posting will try to do so some time tomorrow. Is there a specific method or amount of O2 I should be aware of. Do I use that at any particular time or only as most people here put "the BEAST" attacks which in my case is most any time!!

I am so grateful for having found the CH family and I hope to be able to resume living with dignity!!!!!

Kindest regards!

Did one of the doctors you saw prescribe the imitrex and the verapamil?  There is a lot of information here and on the O.U.C.H. site that you can print out and take to your doctors.

maygirl wrote on Apr 10^th, 2011 at 7:08pm:

Is there a specific method or amount of O2 I should be aware of. Do I use that at any particular time or only as most people here put "the BEAST" attacks which in my case is most any time!!

Hi Maygirl,

Sorry to hear you've had such a miserable experience with CH for so long.

You listen to that brother of yours! He sounds like he's steering you in the right direction, so big kudos to him.

The time to breathe the O2 is right at the onset of an attack, with a liter flow of at least 15 LPM, and a non rebreather mask (which only allows 100% O2 to be inhaled, with no mixture of surrounding air)

Hopefully the oxygen info link will provide you with some useful information on that: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

When you took the sumatriptan injections did they knock the attack down for awhile? (these too should be taken at onset)

Hang in there, there's still plenty of hope for you getting your CH more under control.

My doctors have no clue on CH mostly prescribed bunch of sedatives and depression drugs which I never took. About 3 days ago my brother talked about the cluster headache. Some of the doctors even talked about migraine headaches. To make the story short imitrex shots and the verapamil was my brother's idea. He is he to visit the family and was appalled by my insane headaches, after a couple of days of research became convinced that I'm suffering from CH.
In fact he is the one who gave me the shots last night starting by 2 mg of imitrex at around 9:45 pm which did not help at all then at 10:40 pm the whole veil of 6 mg was injected. We were so disappointed when my excruciating pain remained. He believes in time one of the medications (Sumariptan, Topiramate, Verapamil, ....) would eventually ease my pain. To be honest I'm in so much pain that won't allow me to read or concentrate, he is my "doctor" for the time being,lol. And I can't thank him enough for spending all his time studying on my behalf instead enjoying his trip. We live by the Caspian sea which is so lovely this time of the year but he refuses to take a break and I feel awful about it. My kid brother is a stubborn and won't hear of it until finds a way out. He lives in Washington DC and asked me if anyone could recommend a doctor or maybe a list of doctors he could contact.
One of my most painful part of this whole ordeal is my lack getting some sleep if any at all most of the time.
Could anyone shed some light on that please?
At this point I'm open to any suggestions!!
Bottom line I'm loosing my mind and at this point you people are my only hope.

May God bless you and I hope  to hrer oyjr

I'm pretty surprised and disappointed that the sumatriptan didn't work.  >:(

I wouldn't know whether that means somehow getting a diagnosis by a qualified doctor is called for (I do realize though that you don't have access to any), or if you are one of the few that sumatriptan just doesn't work for, or if you'll have to try it right at onset of an attack.

Some of us can get relief from the night hits by taking melatonin before bed and therefore get some sleep.

Last time I checked I believe from 9mg to 21mg is the melatonin dosage range.

I have no doubt about having cluster headaches, every definition applies (crying when it hits, feeling helpless stabbing pain shoots through my eyes, have to walk in a circle and curse myself to be alive, teary eye, stuffed nose, drooping eye lead, having harsh attacks several times a day, not being to sleep because of severe pain even though being exhausted, having all these symptoms only on the right side of my  head and...etc).
Have had MRI, Ct scan.... no sign of any problems.
BTW, every time I eat anything solid or liquid without an exception I get a fierce attack so bad that I'm afraid to eat or drink. Has anyone ever heard of such craziness before cuz I've not red that anywhere.
Starting today I am raising my Verapamil from 240 mg to 480 mg after reading Linda's opinion and a bit of my own research. Started by 120 mg  at 6:15 am, 120 mg at 10 am so far and in about another hour will take the same dose and finally finishing the day with the last 120 mg before bed time (if the pain allow me to sleep!!!!).
Oh, I did have a shot of Sumatriptan at 3 pm just about 10-15 minutes after having a bite to eat. This time I managed to get injected as soon as I felt it was coming. About 5 minutes after the shot, pain became unbearable so badly that made me cry load but in 40 minutes into the shot felt better and sat down.

I'm going to stop for now because I feel another attack might be coming, seems nothing works for me. Taking 120 mg Verapamil now and signing off.
I'm so scared and worried, can't take this much pain anymore..........

Your overall tactic will have to be: finding a doc who is open/receptive to medical information which you will supply him on headache treatment. (Lots of cultural clashes possible, I understand, but you will have to be the judge on who/how to approach this process!)

I'm throwing a lot of medical stuff as you to use as you judge is useful.
===
   The author is one of the best docs in the Chicago area.

MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache.
====
Print this cluster out and give to the doc. It's a bit unscary stuff at first reading but rather important.


Link to: cluster-LIKE headache.

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



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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See PDF file, below, for list of current treatments.

====

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.
----
Verapamil warning
« on: Aug 21st, 2007, 10:38am »   

--------------------------------------------------------------------------------
I posted this information recently in the form of a news release but more details here.
__________________

Neurology. 2007 Aug 14;69(7):668-75. 

 
Electrocardiographic abnormalities in patients with cluster headache on verapamil therapy.

Cohen AS, Matharu MS, Goadsby PJ.

Headache Group, Institute of Neurology, The National Hospital for Neurology and Neurosurgery, Queen Square, London, UK.

BACKGROUND: High dose verapamil is an increasingly common preventive treatment in cluster headache (CH). Side effects include atrioventricular block and bradycardia, although their incidence in this population is not clear. METHOD: This audit study assessed the incidence of arrhythmias on high dose verapamil in patients with cluster headache. RESULTS: Of three hundred sixty-nine patients with cluster headache, 217 outpatients (175 men) received verapamil, starting at 240 mg daily and increasing by 80 mg every 2 weeks with a check electrocardiogram (EKG), until the CH was suppressed, side effects intervened, or to a maximum daily dose of 960 mg. One patient had 1,200 mg/day. Eighty-nine patients (41%) had no EKGs. One hundred eight had EKGs in the hospital notes, and a further 20 had EKGs done elsewhere. Twenty-one of 108 patients (19%) had arrhythmias. Thirteen (12%) had first-degree heart block (PR > 0.2 s), at 240 to 960 mg/day, with one requiring a permanent pacemaker. Four patients had junctional rhythm, and one had second-degree heart block. Four patients had right bundle branch block. There was bradycardia (HR < 60 bpm) in 39 patients (36%), but verapamil was stopped in only 4 patients. In eight patients the PR interval was lengthened, but not to >0.2 s. The incidence of arrhythmias on verapamil in this patient group is 19%, and bradycardia 36%. CONCLUSION: We therefore strongly recommend EKG monitoring in all patients with cluster headache on verapamil, to observe for the potential development of atrioventricular block and symptomatic bradycardia.

PMID: 17698788 [PubMed]

« Reply #7 on: Today at 1:01am » WITH THANKS TO "MJ" FOR POSTING THIS EXPLANATION. 

--------------------------------------------------------------------------------
The article summarized in layman terms from the website below.

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

"Cluster Headache Treatment Poses Cardiac Dangers 
Off-label use of verapamil linked to heart rhythm abnormalities, study finds 

By Jeffrey Perkel
HealthDay Reporter   

MONDAY, Aug. 13 (HealthDay News) -- People who use a blood pressure drug called verapamil to treat cluster headaches may be putting their hearts at risk.

That's the finding from a British study that found heart rhythm abnormalities showing up in about one in five patients who took the drug in this unapproved, "off-label" way.

"The good news is, when you stop the drug, the effect wears off," said study lead author Dr. Peter Goadsby, professor of neurology at University College London. "So, as long as doctors know about it, and patients with cluster headaches on verapamil know they need EKGs [electrocardiograms] done, it is a completely preventable problem." 

The study is published in the Aug. 14 issue of Neurology.

In a review of the medical records of 217 patients given verapamil to treat their cluster headaches, a team led by Goadsby found that 128 had undergone an EKG, 108 of which were available in the medical records.

Of those 108 patients, about one in five exhibited abnormalities (mostly slowing) in the heart's conduction system -- the "natural pacemaker" that causes the organ to beat. Most of these cases weren't deemed serious, although one patient did end up having a pacemaker implanted to help correct the problem. In four cases, doctors took patients off verapamil due to their EKG findings.

One in three (34 percent) developed non-cardiac side effects such as lethargy and constipation. 

"It is a very nice piece of work, because it provides commentary on a boutique [that is, niche and off-label] use of the drug," said Dr. Domenic Sica, professor of medicine and pharmacology in the Virginia Commonwealth University Health System. He was not involved in the study.

Cluster headache affects about 69 in every 100,000 people, according to the Worldwide Cluster Headache Support Group Web site. Men are six times more likely than women to be afflicted, and the typical age of onset is around 30. According to Goadsby, the disease manifests as bouts of very severe pain, one or many times per day, for months at a time, usually followed by a period of remission. 

Verapamil, a calcium-channel antagonist drug, is approved by the U.S. Food and Drug Administration for the treatment of cardiac arrhythmias and high blood pressure. The medicine is typically given in doses of 180 to 240 milligrams per day to help ease hypertension. 

However, the patients in this study received more than twice that dose for the off-label treatment of their cluster headaches -- 512 milligrams per day on average, and one patient elected to take 1,200 milligrams per day. The treatment protocol involved ramping up the dose from 240 milligrams to as high as 960 milligrams per day, in 80 milligram increments every two weeks, based on EKG findings, side effects, and symptomatic relief. 

Many patients may not be getting those kinds of tests to monitor heart function, however: In this study cohort, about 40 percent of patients never got an EKG. 

Given the typical dosage, Sica said he was surprised so many patients were able to tolerate such high amounts of the drug.

"When used in clinical practice for hypertension, the high-end dose is 480 milligrams," said Sica. "Most people cannot tolerate 480."

Dr. Carl Pepine, chief of cardiology at the University of Florida, Gainesville, was also "amazed" at the doses that were tolerated in this study. "The highest dose I ever gave [for cardiology indications] was 680 milligrams. This might give me more encouragement to use the drug at higher dose," he said. 

But Sica said he thought cardiac patients -- the typical verapamil users -- were unlikely to tolerate the drug as well as the patients in this study, because verapamil reacts differently in older individuals, who are more likely to have high blood pressure, than in younger patients. The average patient in the United Kingdom study was 44 years old. 

According to Sica, two factors would conspire to make older individuals more sensitive to verapamil. First, the metabolism of the drug is age-dependent, meaning that older individuals would tend to have higher blood levels of the drug, because it is cleared more slowly than in younger individuals.

Secondly, the conduction system of the heart (the natural "pacemaker" becomes more sensitive to the effects of verapamil with age, Sica said. 

"It's likely that an older population would not be able to tolerate the same dose," he concluded. 

According to Goadsby, the take-home message of this study is simple: Be sure to get regular EKGs if you are taking verapamil for cluster headaches. Goadsby recommended EKGs within two weeks of changing doses, and because problems can arise over time -- even if the dose doesn't change -- to get an EKG every six months while on a constant dose. 

"The tests are not expensive, and they are not invasive," he said. "They are not in any way a danger to the patient."

For the most part, Goadsby said, should a cardiac problem arise, it will typically go away once the treatment is halted." 
========================================

J Headache Pain. 2011 Jan 22. [Epub ahead of print]

Cardiac safety in cluster headache patients using the very high dose of verapamil (=720 mg/day).
Lanteri-Minet M, Silhol F, Piano V, Donnet A.

Département d'Evaluation et traitement de la Douleur Médecine palliative, Pôle Neurosciences Cliniques du CHU de Nice, Hôpital Pasteur Avenue de la Voie Romaine, 06002, Nice Cedex, France, lanteri-minet.m@chu-nice.fr.

Abstract
Use of high doses of verapamil in preventive treatment of cluster headache (CH) is limited by cardiac toxicity. We systematically assess the cardiac safety of the very high dose of verapamil (verapamil VHD) in CH patients. Our work was a study performed in two French headache centers (Marseilles-Nice) from 12/2005 to 12/2008. CH patients treated with verapamil VHD (=720 mg) were considered with a systematic electrocardiogram (EKG) monitoring. Among 200 CH patients, 29 (14.8%) used verapamil VHD (877 ± 227 mg/day). Incidence of EKG changes was 38% (11/29). Seven (24%) patients presented bradycardia considered as nonserious adverse event (NSAE) and four (14%) patients presented arrhythmia (heart block) considered as serious adverse event (SAE). Patients with EKG changes (1,003 ± 295 mg/day) were taking higher doses than those without EKG changes (800 ± 143 mg/day), but doses were similar in patients with SAE (990 ± 316 mg/day) and those with NSAE (1,011 ± 309 mg/day). Around three-quarters (8/11) of patients presented a delayed-onset cardiac adverse event (delay =2 years). Our work confirms the need for systematic EKG monitoring in CH patients treated with verapamil. Such cardiac safety assessment must be continued even for patients using VHD without any adverse event for a long time.

PMID: 21258839 [PubMed

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Excuse me for loading you with so much but your isolation from good medical care suggests it's better to have all this stuff in your file to use as you see the need and develop understanding of its value.

======
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Please stop the pain meds! Such extreme use both increases the frequency and intensityof attacks and does threaten your well being, overall.

---

Hi Maygirl!

Your beast is scared and worried too, he is scared and worried because you have come here,to us!
When you fear that you cannot take any more, please remember these two FACTS...
1/ It is NOT going to kill you....
2/ It WILL go away....
Say it!

Be strong Maygirl!
You are now on the well trodden road to recovery and growing peace in your life.
And we are all here to walk with you....

Ask your Brother to join us and post on our 'Supporters' section.

Salam

Gary

The frequency and total dosing of imitrex which you report can lead to a change in your attack pattern.
--


Headache. 2000 Jan;40(1):41-4.

Alteration in nature of cluster headache during subcutaneous administration of sumatriptan.
Hering-Hanit R.

Headache Unit, Department of Neurology, Meir General Hospital, Kfar Sava, and the Sackler Faculty of Medicine, Tel Aviv University, Israel.

Abstract
OBJECTIVES: To document the relationship between the 5-HT receptor agonist sumatriptan and a change in the nature of cluster headache in four cases. To relate the findings to the literature on the use of sumatriptan in both cluster headache and migraine.

BACKGROUND: Studies of the efficacy and adverse effects of long-term treatment with sumatriptan in cluster headache are limited and report conflicting findings.

METHODS: FOUR CASES ARE DESCRIBED.

RESULTS: All four patients developed a marked increase in the frequency of attacks 3 to 4 weeks after initiating treatment with the drug for the first time. Three patients also developed a change in headache character, and 2 experienced prolongation of the cluster headache period. WITHDRAWAL OF THE DRUG REDUCED THE FREQUENCY OF HEADACHES AND ELIMINATED THE NEWLY DEVELOPED TYPE OF HEADACHE.

CONCLUSIONS: Determination of the effects of long-term use of sumatriptan will result in more precise guidelines for the frequency and duration of treatment with this otherwise extremely beneficial drug.

PMID: 10759902 [PubMed -
=======================================

Headache. 2004 Jul-Aug;44(7):713-8.

Subcutaneous sumatriptan induces changes in frequency pattern in cluster headache patients.
Rossi P, Lorenzo GD, Formisano R, Buzzi MG.

Headache Centre, INI Grottaferrata, Rome, Italy.

Comment in:

Headache. 2005 Sep;45(8):1089-90.

Abstract
OBJECTIVES: To document the relationship between the use of subcutaneous (SQ) sumatriptan (sum) and a change in frequency pattern of cluster headache (CH) in six patients. To discuss the clinical and pathophysiological implications of this observation in the context of available literature.

BACKGROUND: Treatment with SQ sum may cause an increase in attack frequency of CH but data from literature are scant and controversial.

METHODS: Six CH sum-naïve patients (three episodic and three chronic according to the International Headache Society (IHS) criteria) are described.

RESULTS: ALL SIX PATIENTS had very fast relief from pain and accompanying symptoms from the drug but they developed an increase in attack frequency soon after using SQ sum. IN ALL PATIENTS, THE CH RETURNED TO ITS USUAL FREQUENCY WITHIN A FEW DAYS AFTER SQ SUM WAS WITHDRAWN OR REPLACED WITH OTHER DRUGS. Five patients were not taking any prophylactic treatment and SQ sum was the only drug prescribed to treat their headache.

CONCLUSIONS: Physicians should recognize the possibility that treatment of CH with SQ sum may be associated with an increased frequency of headache attacks.

PMID: 15209695 [PubMed

----
If you and the doc agree on following the treatment recommendation in this abstract, I'd suggest two possible options:

1. Neurology. 2007 Aug 28;69(9):821-6. 
Zolmitriptan nasal spray in the acute treatment of cluster headache: a double-blind study.

Rapoport AM, Mathew NT, Silberstein SD, Dodick D, Tepper SJ, Sheftell FD, Bigal ME.

Department of Neurology, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA. alanrapoport@gmail.com

OBJECTIVE: To evaluate the efficacy and tolerability of zolmitriptan 5 mg and 10 mg nasal spray (ZNS) vs placebo in the acute treatment of cluster headache. Design/ METHODS: We conducted a multicenter, double-blind, randomized, three-period crossover study using ZNS 5 mg, ZNS 10 mg, and placebo. Headache intensity was rated by a 5-point scale: none, mild, moderate, severe, or very severe. The primary efficacy measure was headache response (pain reduced from moderate, severe, or very severe at baseline, to mild or none) at 30 minutes. Logistic regression was used to account for treatment period effect as well as for cluster headache subtype effect. RESULTS: A total of 52 adult patients treated 151 attacks. For the primary endpoint, both doses reached significance at 30 minutes (placebo = 30%, ZNS 5 mg = 50%, ZNS 10 mg = 63.3%). For headache relief, ZNS 10 mg separated from placebo at 10 minutes (24.5% vs 10%). Zolmitriptan 5 mg separated from placebo at 20 minutes (38.5% vs 20%). For pain-free status, ZNS 10 mg was superior to placebo at 15 minutes (22.0% vs 6%). Both doses had higher pain-free rates than placebo at 30 minutes (placebo = 20%, ZNS 5 mg = 38.5%, ZNS 10 mg = 46.9%). Side effects were mild and seen in 16% of those attacks treated with placebo, 25% of attacks treated with ZNS 5 mg, and 32.7% treated with ZNS 10 mg. Conclusions/Relevance: Zolmitriptan nasal spray, at doses of 5 and 10 mg, is effective and tolerable for the acute treatment of cluster headache.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 17724283 [PubMed
---
HOWEVER, Zomig is in the same class of med as Imitrex and would not be an immediate replacement for Imitrex--but a future option.

======
======
IF you decide to stop Imitrex, print the following and discuss with the doc. This med is in a different class from Imitrex AND a number of us have had excellent benefit with it.....

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]

Hi Maygirl,

Well it sounds to me like you have a particularly severe case of CH, very very sorry to hear that.  :(

Understood about being scared, worried and feeling that you can't take this much pain anymore, but
please know that you're not the only one, and VERY IMPORTANT -  there have been others with this level of CH that have found significant relief. Your verapamil very well may work like a charm once it has a chance to kick in, but even if it doesn't, there are other powerful preventatives to try.

You would encounter some other folks with a particularly severe CH history over at the clusterbusters.com message board. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE These are folks who, after the meds stopped working for them, eventually decided to try nature's powerful preventatives in the forms of some "hallucinogens" (often at sub hallucinogenic doses) and many of them have found relief. This can include Rivea Corymbosa seeds, which in my experience, and the experience of many others are effectively non hallucinogenic at a therapeutic dose. They are legal to mail order and possess in the US, but if you were to consider this route of course you or your brother would have to investigate their legality there and not risk breaking any laws that could result in severe punishment.

I'm hoping that you'll find some relief ASAP with verapamil as your preventative and O2 as your abortive, but in the meantime if you and your wonderful brother become interested in more info on the clusterbusters back up plan, here's a Newsweek article on the subject that provides a good introduction:START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hello all,
As I mentioned before I have raised my Verapamil to 480 mg since yesterday on the advice of my brother yet last night I had such a hard time that forced me to have two shots of highly strong pain killer. Then I felt come enough to finally sleep the whole night in a very long time and today I had no attacks so far with hardly any pain.
Is it possible that higher dose of Verapamil kicking in or this come state is the result of strong pain killer shots?
I am continuing my 480 gm dose but a bit worried of its side effects.
Any thoughts would be appreciated, BTW my O2 tank will be ready some time tomorrow.

Should I continue the 480 mg, reduce or perhaps raise it??
Currently I'm taking 120 mg of Verapamil 4 times a day starting in the morning then around lunch time, mid afternoon and before bedtime. I need some inputs please, I'm so scared of another day of agony!

Thank you for being so kind and wish you all a pain free and happy life!

Verap. takes a couple of weeks to become fully effective and, even then, you may have to adjust the dose upwards. Don't get into the game of playing with dosing. The article I sent on using Verap is a well established procedure.

Side effects with Verap are not common. Constipation being he most often repoted but easily controlled; the heart issue needs regular EKGs, per the material I sent, but working with you doc to get them done will catch any problems. Verap is the mostly used med for prevention and has a long trackrecord of effectiveness and safety.

As soon as you get the oxygen working, GET OFF the pain meds. They complicate the picture, defeating the relief you are seeking.

I know I threw alot of material at you but it's important, given you isolation from good medical care, to digest it ASAP so that you can lead your doc into how to care for youself.

Maygirl,

I really feel your frustration but are you raising your level of Verapamil based based on your brothers advice.???  Even though I told you earlier that the doasage seemed quite low..you really should have a Doctor do the upping or lowering of dosages.

I am quite surprised that Imitrex injections didn't work but Ibuprophen did.   :o   Your brother IS correct about it hurting your liver not to mention stomach lining.   Also...narcotic pain-killers have a tendancy to cause re-bound headaches from hell, so you may be puttting yourself in a position to suffer more than necessary by taking them.

I believe that once you get your 02 tank, you are going to be pleasantly surprised at how fast you can abort an attack.  Make sure you start using it at the very first  sign of pain. Don't wait!

Linda

I do apologize for not being able to write the past few days and particularly thanking those who took time sharing their knowledge and experience with me.  I'm pleased to report my attacks are a bit less frequent even the pain has lower intensity. I know this is too soon to make anything out of it but I owe it all to my kid brother whose non stop day and night diligence research realized I must be suffering from cluster headaches and introduced me to CH.com as the best source for information and to control the BEAST. I am on 480 mg Verapamil for the last several days, bought the Oxygen kit but the tank is not in yet (bummer) and proud to say didn't take any Ibuprofen the last couple of days!!!
My brother is putting together some documents (articles, some clips from here, the news week article by the journalist who attended the ClusterBusters' conference in Chicago, and so on) for doctors I'll have to see in the future.

I have several questions on the use of O2 and the medications. But I will try to put that on my next posting.
I just wanted to thank you for showing me the rope, 20 years of suffering and poisoning my body with all the wrong medications makes me feel there might be a light at the end of the tunnel after all.

Thank you!

I would be grateful on any advice of my current dosing, I know that should be the doctors job but please keep in mind that I live in Iran and  there is hardly any trained doctors with CH experience. That's why your contribution in this regard is most crucial!!!

maygirl wrote on Apr 14^th, 2011 at 5:03am:

...I'm pleased to report my attacks are a bit less frequent even the pain has lower intensity...

Yay! Here's hoping this could be from the Verapamil kicking in, and it's effectiveness will increase over the next several days.

Your brother is now an official recipient of the Bejeeber CMH (Cluster medal of Honor!) award that goes out to those supporters who haven't directly experienced CH themselves but have enough empathy and understanding to step in and take heroic actions to come to the aid of a CH sufferer.  :)

This is Maygirl's brother.
Thank you bejeeber I'm honored to become CMH recipient that's the coolest thing anyone ever said  8-)!!!!
But seriously, you guys out there are the real heroes and my hat is off to you all. Please keep up your superb job educating people on this dreadful disease.

God bless you for helping my sister and many other sufferers all around the world!

Hello,
My pain is coming back as hard and seems the Vereapamil at 480mg a day is not helping much. Any thoughts on that?
I need someone to help me with the O2 instruction, I've read the link on Oxygen info on the left but still not very clear what it means by hyperventilating before putting the mask on. How do you hyperventilate if you are at rest or not running around?
Would someone who is doing that regularly talk to me please, I did signed up with Skype and would really appreciate if someone could actually show me or explain to me how is it being done properly? I am highly hoping that this O2 would work.

Hi Maygirl, sorry to hear about the return of the full strength beast.  :(

[Disclaimer: I'll address the O2 issue, as I have used O2 with success after having learned about it here, but my knowhow is not quite at the guru level yet]

Many of us, including myself, swear by hyperventilation, but others report doing well with just deep breathing, so it may not be necessary.

A way to think about hyperventilation though, is that with the mask on and the O2 flowing, you just breathe in and out fast and deep, "huffing,  about 3 to 4 times as fast as normal, like you would if you had just finished running your fastest mile and were trying to catch your breath.

When doing this with the recommended non rebreather mask or tube, you'll want to have a reservoir bag attached and a pretty high liter flow (like maybe 25 LPM) or you'll be breathing faster than the O2 can be supplied.

Sorry if this is seeming complicated. It very well may be worth a try to just breathe the o2 at a normal rate, since it's quite possible that will work fine for you.

Thanks for the tip bejeeber!
One other thing I forgot to mention in my last post is the timing. I learned that I should start the O2 therapy at the onset of pain but my pain is there almost all the time with higher or lower intensity.
So the pain is always there and when the BEAST hits hard is so quick that is almost with no warnings. Would it work for lowering the pain at this point as well?
Lets say I have the pain not at its highest level but disturbing enough, would the O2 work at this point? Anyone here tried this method at different level of pain or is only useful at the very beginning of the onset?
Any information would be so helpful, please speak in a lame language, I'm a novice!!
Thank you in advance.

MayGirl,

I sent you a paper with the instructions on how to use oxygen therapy...  did you get it?  And yes, start oxygen therapy as soon as you feel an attack approaching if you're awake, and as soon as possible if a CH wakes you from sleep.  The longer you wait, the higher the pain will climb and higher pain levels take longer to abort.

Take care and shoot me a call on Skype... I work with a lot of CH'ers over Skype.

Take care,

V/R, Batch

Hello Batch, I am grateful for your offer. Will contact you via  Skype, thank you very much.

Pete, Thank you so much for the attachments. It is extremely impressive and educational. We have several questions on the correlation of diet and CH. We were pleased to read your comments in that regard.  I have some questions on the  phase 1 - Clearing Nitrogen. I presume we can breathe from the oxygen mask but breathe out without using it. Secondly, how many breathing is necessary for Clearing Nitrogen, just once? After phase one, breathing should be normal or in hyperventilation state?
We would love to speak to you on Skype but have been unable to make the connection. Any tips on correct method of O2 utilization will be great. Once more we are very appreciative for your excellent research and contribution.

Hello everyone,
Just want to share my first O2 therapy experience with you. Last night around 1 AM I had an attack with my brother help and persistence I used the high flow oxygen. Within 7 to 8 minutes my devastating headaches was aborted.
I feel that I finally with the help of Peter Batcheller which I am so grateful for can start a normal life. Thank you Peter!!!
O2 therapy is so real and I for one believe its mighty power of abortive for cluster headache. I also started on the cocktail of Calcium, Magnesium, Zinc, and Vitamin D3.
Am reducing the Verapamil and hopefully will stop that totally very soon.
I feel like a brand new person but don't want to jump into conclusion yet. My prayers are with all my new family of Ch.com, without your help and support I wouldn't have been able to achieve so much in such a short time.

May God bless you all!

That is FANTASTIC.  :) [smiley=2vrolijk_08.gif]