hiya everyone! just registered here and wanted to say hi and introduce myself.

my name is matthijs, or matt for short (i know all you english speaking guys got some difficulties with the full name, so matt will do  ;) )im 25 years of age, living in the netherland, europe. i had my first cluster, about 11 years ago i think, when i was 14. no cure, nothing helped.

when i was about 19 i got my first injection based medication, to fend off the attacks, they hlped, as they still do. i recently started on a beta blocker called metoprolol, and will let you guys know how it turns out.

for me, attacks come as they please, night, morning, afternoon. strangely enough nearly never in the evening.
for the last few Clusters, i have been experiencing this "nagging" feelinginbetween the attacks. this is new to me, and wears me down even more. it seems that my CH is changing, though i dont know if its a positive change, or a negative.

wow... that was a whole heap of bad info on me! maybe something positive now to end well? lol

im a big gamer! aboslutely love playing videogames, and socialize with people from across the planet. allthough when i get into my cluster i know better, i havent touched my console in weeks. i play guitar, or.. well, i try to lol, had lessons from my dad when i was young, gave up, and picked it back up when i was older. i love music, RHCP is one of my favorites, aswell as ACDC and other older rock bands.big movie fan aswell, and download the tv show leverage every sunday, because they are too stupid in the netherlands to put it on air.
to keep myself from being inside so much doing all of those hobbies, i have a job, making artificial flavouring for foodstuffs. i go there every day on my bicycle to stay in shape.

onto the CH now; ive been trying some unconvential things aswell, acupuncture, water treatment. unlucky for me, appearantly i am allergic to verapamil. allthough it did help me when i tried it, im not sure my doctor will let me back on it.

i read something on the internet about some supplements that some say might help in managing clusterheadaches.
its called KUDZU root extract.  i havent started them yet, and was wondering if any of you guys know anything about it.

i try to search the internet on new ways of dealing with this awful hellish pain as much as i can. i know some of you have it far worse than i have, and i wish you guys all the best with your upcomming trials.

matt

I hope your docs are better educated in treating Cluster than many are in the U.S. !

If you are looking for some basic information here is some reading for you.
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Latest evaluation of commonly used medication. See the PDF file, below.
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A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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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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This manual is written by one of the better headache specialists in the U.S. While covering more than Cluster, it has some useful insights in treating headaches, in general.

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ALL NEW!! HEADACHE 2010-2011
Robbins Headache Clinic

Free, 50-page. Covers all major headache Dx and
related issues.

In a PDF file.
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I hope the substitute for Verapamil helps you. We don't see it used for this purpose here and so your reports on effectiveness will be helpful.
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As time allows, explore the buttons (left) starting with the OUCH site.

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Welcome,

Coach Bill

Welcome to the board Matt. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, since you're allergic to that that's out the window! :(  Topomax also has a loyal following.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Read this post, it’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time:

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For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

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

Joe

thank you guys for the warm welcome!

as im living in the netherlands, things work alittle different here.

i can pretty much get every medication i ask for from my doctor, free of charge, allthough it took him 6 years to finally prescribe the injections, i can order as many as i like. the bad thing however is the total lack of knowledge about CH, ive been to a neuro a few times now, did me a scan wich ofcourse showed up clean.  my neuro says he noticed a difference in height concerning my left and right shoulder.

he said it might give extra tension in my neck, wich could cause for the headaches. he suggests a nerve block procedure, does anyone know anything about that?

im also under treatment at an acupuncture clinic, and they also mention there is something going wrong in my neck.

im going to try the vitamine/fish oil regime that is helping to a number of people here, and see how that goes, ill keep you guys posted!

Hmmm...most of us have not found chiropracty or acupuncture to be terribly helpful with addressing CHs. That does not mean you may have a correlative condition which could be relieved by such procedures, but to suggest CHs are a tension headache goes against current thought that they are a primary condition caused by a defective hypothalmus. Nerve blocks tend not to be effective in the long run but remain popular among drs as an intermediate intervention. Try and sort out if there are two conditions (or more) going on with you, and then try to isolate treatments to each condition. A lot, I know, but we've all traveled the heartbreak trail when others know best about what causes our attacks. Good luck, welcome and God bless. lance

been trying these beta blockers for more than a week now, and havent noticed much improvement. this weekend in particular has been one in the ***

im starting to think these beta blockers are the cause of it.

please correct me if i'm wrong, but the pain of CH derrives from dilation of the blood vessals right?

so beta blockers have the function to dilate blood vessals in the first place, wich makes it pretty much an arch enemy of CH! does this sound right in any way?
so, that got me thinking, verapamil is pretty much the same thing as a beta blocker... so why does verapamil work on CH sufferers? isnt verapamil dilating the blood vessal too?

this is confusing for me, i hope any of you understands what im trying to say here. im either missing a piece of info,or im getting things mixed up.

hope anyone can shine their light on this winding path!

No, the dilation theory is not longer accepted.
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Interesting to note that he is saying that the primary mode of action is NOT as a vasoconstrictor but on its effect on the central nervous system. Doesn't change our appreciation of this class of meds but suggests we need to change how we think about the nature of CH.
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Handb Exp Pharmacol. 2007;(177):129-43.   


Serotonin receptor ligands: treatments of acute migraine and cluster headache.

Goadsby PJ.

Institute of Neurology, Queen Square, London WC1N 3BG, UK. peterg@ion.ucl.ac.uk

Fuelled by the development of the serotonin 5-HT(1B/1D) receptor agonists, the triptans, the last 15 years has seen an explosion of interest in the treatment of acute migraine and cluster headache. Sumatriptan was the first of these agonists, and it launched a wave of therapeutic advances. These medicines are effective and safe. Triptans were developed as cranial vasoconstrictors to mimic the desirable effects of serotonin, while avoiding its side-effects. IT HAS SUBSEQUENTLY BEEN SHOWN THAT THE TRIPTANS' MAJOR ACTION IS NEURONAL, WITH BOTH PERIPHERAL AND CENTRAL TRIGEMINAL INHIBITORY EFFECTS, AS WELL AS ACTIONS IN THE THALAMUS AND AT CENTRAL MODULATORY SITES, SUCH AS THE PERIAQUEDUCTAL GREY MATTER. Further refinements may be possible as the 5-HT(1D) and 5-HT(1F) receptor agonists are explored. Serotonin receptor pharmacology has contributed much to the better management of patients with primary headache disorders.

PMID: 17087122 [PubMed]
=================================================================
J Clin Neurosci. 2010 Mar 11.

What has functional neuroimaging done for primary headache ... and for the clinical neurologist?
Sprenger T, Goadsby PJ.

UCSF Headache Centre, Department of Neurology, University of California, 1701 Divisadero St, Suite 480, San Francisco, CA 94115, USA.

Our understanding of mechanisms involved in primary headache syndromes has been substantially advanced using functional neuroimaging.

THE DATA HAVE HELPED ESTABLISH THE NOW-PREVAILING VIEW OF PRIMARY HEADACHE SYNDROMES, SUCH AS MIGRAINE AND CLUSTER HEADACHE, AS BRAIN DISORDERS WITH NEUROVASCULAR MANIFESTATIONS, NOT AS DISORDERS OF BLOOD VESSELS.

PMID: 20227279 [PubMed]
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Very possible that you are not using a high enough dose for prevention.

This is a widely used protocol for Verapamil to give you some idea of how this meds can be used.

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.

Welcome Matt,

Great site with great advise and experience... read ... read ... read... then repeat... :). You'll find a great deal of help here.

All the best,

Baer