hi all,

im fairly new here and was recommended by someone to put in a little detail about what treatments I have used/do use to get relief.

when I first diagnosed myself with CH I explained to my Dr what I thought I had who agreed at the possibility and agreed at the prescription I suggested. a course of verapamil and a course of steroids to stop them from occurring instantly, they were 60 ml first day and reducing by 5 ml every day.
almost instantly the CH were gone. stayed gone for 2 years.
the same treatment was effective until this time around.

upon getting them this time around I went to my now Dr (ive moved from UK to Ireland) who agreed with verapamil and gave me nasal spray to abort the headache when they came on, Sumotriptin I think they were called.

the nasal spray stopped the CH within about 5 mins which is great, but 11euro a shot I cant afford to be using them. I returned and was put on the steroids again still alongside the verapamil which again within a day or 2 stopped the CH from coming on.

a few days after the steroids were finished I was getting them again. the headaches I get nowadays are more severe than ever before, the pain is always on the left side of my head focussed around and behind the eye, my eye always feel like the pressure behind it will make it pop out of its socket, the light hurts, I get slightly nauseous. sometimes I get them when I wake up, others I get woken up by them early and on occasion I will get a 2nd one follow a couple of hours later.

im not too sure what else to put so I guess any questions or suggestions please ask.

It's likely that the dose of Verapamil is too low to be effective. Print the following and use to discuss dosing change with your doctor.
==============
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.
====================
There a possibility of a side effect developing with these doses but, with close monitoring, not a barrier to its use. Also print this material and give to the doc.
---

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

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


__________________

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

Saint, I can't stress enough your best abortives are a combination of Oxygen and energy drinks. They are cost effective and best of all, they work! For the energy drink, any drink that has at least 1000mg of Taurine and 85mg of caffeine works. Red Bull, Monster, Rock Star....I find the best results when I chug a double Monster ice cold at the first sign of an attack. Then I get on my O2 tank-high flow (15lpm or higher) using a non-rebreather mask. There are several good techiniques but I generally let my body and the pain regulate the rapidity and depth of breathing. Point is, this combo cuts the intensity and duration of the attack to under 5 minutes. Give it a try! blessings. lance

thanks for your thoughts guys.

Bob, im on a 40mg dose of verapamil taken once a day, I also have very low blood pressure, always have had, so the drs don't want to give me a higher dose of it?

Lance, whats the story with the energy drinks? why do they work, what do they actually do that helps with the attacks.

when it comes to oxygen treatment, I assume that has to be prescribed by the drs, but I don't always get the attacks at the same time of day, sometimes its the middle of the day when im in work, I do work shifts as well which doesn't help with it I imagine, as the attacks can happen anytime and I can be away from the house at any time due to work is there a travel size oxygen setup?

Hello Saint, we don't really know why the energy drinks work but they really seem to make a difference. It appears the combination of 1000mg of Taurine along with the caffeine, and maybe the effect of chugging it ice cold, seems to be essential. I chug an ice cold double Monster, then hit the high flow O2. Abort comes in minutes usually.

The O2 can be prescribed by a doctor and yes, there are portable E tanks, about 650 liters of O2. You can also set up a welders O2 rig in your home if you can't get a Rx. Key is high flow: 15lpm or greater. I use a 25lpm regulator on my E tanks and a demand flow valve mask on my home tank. The Oxygen info tab at left is very helpful.

Let me know if you have any other questions. Good luck and God bless. lance

Hi Saint,
Sorry to read you are having a tough time! 

As you know, CH'ers require 3 types of treatment...1. transitional, 2. preventative and 3. abortive treatments.

Your Prednisone is the transitional while awaiting the Verapamil (preventative) to increase blood levels to effectiveness. 

Unfortunately, your Verapamil dosage (40mg/daily) is extremely low for CH'ers to achieve a decrease in attacks and intensity of attacks.  You had stated the Verapamil is low because your blood pressure is already low.  Verapamil lowers blood pressure, so it makes no sense why your doctor is prescribing you something that actually might do you more harm (lower your BP even more) than good. 

My suggestion is to only use the Pred if you really must as it has many bad side effects.  Furthermore, your transitional (Prednisone) treatment is of no use to you or any CH'er as a transitional purpose, if you are not properly taking a preventative at proper dosages.  In other words, you are taking meds for no real good purpose other than just taking them. 

The abortive meds such as o2, Imitrex, energy drinks etc are all great and necessary to abort attacks. 

However, we CH'ers use a preventative med/treatment for two main reasons....1. to reduce the frequency of daily attacks and also 2. the preventative med/treatment will decrease the intensity of attacks. 

If your preventative med is not the proper dosage, it makes no sense to take it. I suggest finding a preventative med/treatment that will not reduce your blood pressure.  Personally, I don't know of anybody and others will hopefully chime in here to assist with recommendations. 

It makes no sense why your doctor prescribed you Verapamil when you already have low blood pressure.  Furthermore, the 40mg dosage is not an effective dosage to be prescribed to CH patients. I would recommend finding a knowledgeable doctor for starters. 

Until then, you might consider an alternative preventative treatment...the anti-inflammatory vitamin regimen which is all natural, inexpensive and healthy for everybody.  You might consider trying it, as it has proven very effective for most CH'ers who have diligently followed protocol. 

Hope this helps! 

-Gregg in Las Vegas

A 40mg dose of verapamil is very low, with most people with CH needing 360-480mg a day, so 40mg is unlikely to be too effective. Instead of this there are other preventives which might be better for you like lithium or topomax. Do discuss these as options with your doctor.

The vitamin D3 approach is also worth considering. It has worked well for many people here, including myself, with some enjoying multiple years of CH pain free time.

With energy drinks the important ingredients seem to be the caffeine (which is a vaso contrictor, just like oxygen is) and the taurine (which is a calcium channel antagonist, just like verapamil). A lot of migraine pain relief medication also includes caffeine too.

For oxygen on the move you've a few options. Some will keep a tank in the boot of their car and head there when they get a CH. Others, including myself, keep a small cylinder in a backpack and just grab it as required. It is just a matter of finding out what works best for you.

hi saint,
               I too have low blood pressure and when first diagnosed the neuro gave me about the same in fast release verapamil. knocked me around terribly, couldn't stand up properly. my doctor then swapped me to a slow release, firstly about 120mg, monitored me for a month then put me up to 180 mg. each time it really took some getting used to, but I managed to get up to 240 mg. it still made me a tad light headed, but my blood pressure seem to adapt to each slowly increased dose. I levelled out at about 115 bp.  I definitely couldn't take any more than 240mg, they tried me on 280, but that was too much.
on the verapamil alone, my next cycle's intensity levels were about 40 % better, so it did help, but in all honesty, wish they had put me on to another preventative as it was and has been a real struggle with the effects of verapamil on my general well being. it really has made me quite lethargic over the 18 months of being on it.
im now on the vit d regime and am 3/4 of the way in weening off verapamil, I can actually feel the overall difference to my body as it gradually gets out of my system.
so, my low blood pressure did adapt to verapamil, but I don't think the final levels of what I could take, proved to be an effective preventative for me with low blood pressure.
as the others have said, another type of preventative could offer you a better option. I suppose its a learning process. but please do look at batches vit regime, it has worked for so many people, and seems to be helping with me.
kindest regards
colin

It's not uncommon for folks to have low BP but use Verapamil at high doses for Clusster without any problems. We don't have an explanation why this happens but that's our experience!

I'd encourage the doc to try increasing the dosing slowly and monitoring you.

Important that you not use steriods to block attacks for more than a couple of weeks.

In addition, print out the PDF file, below, and give to the doctor.

---

guys,

thank you all so much for this info so far. this morning I was awoken by the onset of a CH and tried for the first time an energy drink. I have to say it was a success, within a few mins it slowly subsided and let me go back to sleep.

I guess at this point I need to be re visiting the drs to talk about the next move. 

I started out with the Verapamil as a preventative even though I have very low blood pressure.  It did not affect my blood pressure, even when I was taking 480mg a day.  After a few years, it became ineffective so I tried Depakote (made me nauseous so I stopped it),  and then Topamax (worked for one season).  I have been on the anti-inflammatory regimen for one year and it has been successful in eliminating my episodes except for when I had a mild case of shingles.  My cycles run from Jan-June, late Aug-Nov, three times a day and for up to 3 hours without aborts like sumatriptan (nighttime wake up strategy), energy drinks and 02 (6am and 1pm aborts) so to not have any activity but a blip is huge for me.  Can't say enough about the energy drinks and the 02.  I can even manage with just an energy drink if I catch it early enough!  However, for the past year, even these strategies have been collecting dust.  The D3 regimen has been a life saver! 

thanks for your input Emjay
I have to say that since I last wrote on this post I have been plagued with many more CH attacks.
this week im working the night shift so I finally got into bed at about 09:45, at 11:35 I was woke up with the start of a CH, I rushed my energy drink down but I think it had already got too far into it as the pain just got worse and worse.
to date this was the worst attack I have ever had, it lasted 3 times longer than a normal attack and then I finally passed out. my head feels seriously bruised/sore/damaged on the inside where the pain happens.

I need to ask a question though, info first...just over a year ago my father passed away from a grade 4 brain tumour, from diagnosis to his departure it only took 4 months. age 67. like me he suffered with these CH when he was a child but for him they stopped by his mid 20s.
the question - is there anything I need to worry about? could it be a tumour triggering the attacks? could there be a link between my fathers attacks and eventual tumour?

help please :-/

CHs vary with how painful they are and what impact they have on us, so we all know what it is like to get the truely special ones that batter and bruise us with their intensity. Hopefully you get few like this, especially with a good preventive / abortive combination.

It is possible for tumours to result in CH symptoms, but not CH itself which is due to the hypathalamus not working correctly. This is one of the reasons why people get an MRI or CT scan to rule out tumours as a potential cause of the CH symptoms. Have you had one of these?

It isn't known if there is a definite link between having CH and then developing a tumour. However it is most likely that it is simply a coincidence.

Saint wrote on Apr 25^th, 2014 at 10:38pm:

thanks for your input Emjay I have to say that since I last wrote on this post I have been plagued with many more CH attacks. this week im working the night shift so I finally got into bed at about 09:45, at 11:35 I was woke up with the start of a CH, I rushed my energy drink down but I think it had already got too far into it as the pain just got worse and worse. to date this was the worst attack I have ever had, it lasted 3 times longer than a normal attack and then I finally passed out. my head feels seriously bruised/sore/damaged on the inside where the pain happens. I need to ask a question though, info first...just over a year ago my father passed away from a grade 4 brain tumour, from diagnosis to his departure it only took 4 months. age 67. like me he suffered with these CH when he was a child but for him they stopped by his mid 20s. the question - is there anything I need to worry about? could it be a tumour triggering the attacks? could there be a link between my fathers attacks and eventual tumour? help please :-/

Yes, please see a headache specialist ASAP and get your head checked out for Tumors or Bleeds - Most likely not related, but doesn't hurt (but might cost $) to get it checked.