So many of the folks who write from your part of the world convey the same story: doc who lack knowledge/skill in treating Cluster.

First step: contact your excellent support group and use their guidance in how to seek a better level of care. There are speciality headache clinics which they can suggest.
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The overall picture of treatment offered so far is inconsistent with what we expect in the U.S. The major steps which we rgard as good practice are:

1. A good diagnostic work-up to both define the type of headache condition is involved and to exclude other disorders which, while mimicing Cluster, for example, can be rather serious.

IF Cluster has been diagosed, major steps in therapy are: A.,short term use of steriod to block the attacks while; B. starting to use a preventive med which reduces frequency/intensity of attacks (this class requires several days/weeks to be fully effective); C. using a potent, fast acting abortive to kill an attack within minutes.

See the PDF file, below, for the latest evaluation of these types of medications. Suggest you print out this article to give to your current doc and to use as a tool to discuss treatment options--and to use for your personal education.

Print the full version of the following for your education;




Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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OUCHUK has much literature for you and you can explore the buttons (to the left of this page), starting with the OUCH site for good material.
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We have found it necessary to learn more than our doctors know about Cluster so that we can press for good care. It's a strange position to be in but, if you have a good doc, he will be open to receiving the medical materials which they have not received in their training.

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When you write here about medicaitons, use the chemical names, NOT the brand or trademark name. Brand names change between countries.
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Ask specific questions as they develop. Helps us to give replies which are focused/on target to your needs.[tr][/tr]

Welcome to Clusterville

  ... and thanks for being a supporter.  It was my wife who found this site for me 2/02, after 13 months of tests, mis-diagnosis, non-working meds.  I was a basket-case . . .  afraid to sleep, afraid to eat, always exhausted, always in fear of the next attack.  This place gave me the info to take to my doc and finally start having some control over this beast of ours.

  You have much reading to do.  Among the scripts you listed above, you didn't mention oxygen.  02 works as an abortive for 70% of clusterheads if used at the first sign of attack.  You MUST have the proper flow-rate (15-25 lpm) and mask (non-rebreather . . . the one with the bag . . . preferably an O2ptimask with the big green 3-litre bag).  Most can abort in minutes if used when you first feel him coming.   It has been my only abortive for ten years as I can't use triptans (like Imitrex, called Imagran in the UK) due to some artery blockage and high cholesterol.

  Please read the "123 days PF and counting . .." thread started by Batch  on the Meds,Therapies board.  It is an anti-inflamatory regimen that has helped many . . . me included.  After 11 years chronic, haven't had an attack since mid-November . . . AND, it's all over-the-counter supplements (vitamin D3, omega-3 fish oil, calcium citrate w/magnesium, and zinc).

  Re the shrooms . . . YES . . . many have found relief/remission going the "magic mushroom" route . . . serious trials are underway.  Go to clusterbusters.com for (much) more info.

  Read, read, read . . . and ask any questions you might have.  The info/advice/comments you will receive come from folks who truly know the pain of CH and we're here 24/7 to help.

  Welcome Home

    Be Safe,   PFDANs


      Richard

Hi Aisling

You two have certainly been through quite a battle, not just with the headaches but also with the medical system that sadly is all too familiar.

Reading through the medication it is clear that Davy hasn't been seen by a neurologist who is familiar with and up to date with treating CH. Pain medication is virtually useless for CH, even the strongest narcotics, never mind over the counter medication like ibuprofen do not touch the pain of CH plus they take too long to take effect.

It also sounds like Davy has been on steroids long term and potentially at high doses. This is potentially damaging to his body. Normally we tend to use steroids on a tapering dose over about 2-3 weeks at the start of a CH episode, not for months or more at a time. This is something that needs to be changed.

Davy needs to work with an experienced neurologist who specializes in headaches. As someone else suggested, if there are none in Ireland then the UK is just a plane flight away.

The CH symptoms you describe sound perfectly familiar with what people go through who are not being treated effectively.

For treating CH, the combination is one of preventives to limit CHs and abortives to kill off a CH.

For preventives, drugs like verapamil (isotopin), lithium and topomax work well. However we tend to use much higher doses that most people, e.g. verapamil is normally needed at 360-480mg a day, sometimes as high as 1000mg to be effective.

For aborting a CH, oxygen (see the link to the left) is simply amazing. Using a non-rebreather mask and a flow rate of 25lpm I can kill off my CHs in about 5 minutes or less. Another alternative is to use imitrex (imigran) injections (not tablets) and these too can kill off a CH in about 5 minutes.

Read up about how high doses of vitamin D are helping many (including myself) - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

And keep reading here. You'll soon learn more than 99% of the doctors you've seen so far about CH.

Handb Clin Neurol. 2010;97:217-32.
Botulinum neurotoxin in the treatment of headache disorders.
Mauskop A.
Abstract
Botulinum neurotoxin (BoNT) has been in clinical use for the treatment of headaches for over 15 years. Recent double-blind placebo-controlled trials have confirmed the efficacy of BoNT type A (onabtoulinumtoxinA, Botox) in the treatment of chronic migraine.

THE EFFICACY OF BONT IN THE TREATMENT OF EPISODIC MIGRAINE HEADACHES, CLUSTER HEADACHES, AND CHRONIC TENSION-TYPE HEADACHE (TTH) HAS NOT BEEN EXAMINED IN LARGE CONTROLLED TRIALS.

Presumed mechanisms of action of BoNT in headache disorders are the reduction of afferent input induced by muscle relaxation and inhibition of the release of neurotransmitters, such as glutamate and calcitonin gene-related peptide, from peripheral sensory nerve terminals. Over 20 years of extensive clinical experience has established a remarkable safety for BoNT, particularly type A and specifically Botox or onabotulinumtoxinA, which has been used much longer and more widely than any other form or serotype of BoNT. Because BoNT is a biological product, the safety and efficacy of one BoNT formulation cannot be extrapolated to a different one, even of the same serotype.

Copyright © 2011 Elsevier B.V. All rights reserved.

PMID:20816423[PubMed]

Thanks guys for your help and kind words. Davy has hada couple of bad days and is back up on a high dose of steroids just to keep the pain barable. He rang his doctor and he has an appointment tomorrow. His doctor reckons another dose of botox is needed, as she tinks the last dose hs worn off. Fingers crossed he will be down off the steroids soon, hate when he is on a high dose. When Davy was making his appointment he told his doctor about the oxygen and she was very interested in it. She said she had never treated anyone with it but would do some research on it and contact Davy's neurologist to see if he had heard about it before tomorrow. I am quietly excited about it because using oxygen to treat his pain has me fascinated since I joined this site. I am curious to know if anyone was taking verapamil without the oxygen and the verapamil didn't work. The reason I ask this is  Davy has been taking verapamil and propranolol to try to come down on the steroids but this hasn't work. Maybe with oxygen the result might be better. I will let you know the outcome of his visit. Hope you all are keeping well.

Aisling wrote on Apr 17^th, 2012 at 3:35pm:


Verapamil takes about 7 to 10 days to become effective after any change in dose plus most people need 360-480mg a day with some as much as 1000mg. This means it can take a while to build up to an effective dose of verapamil. Even when working well, verapamil is not a perfect preventive, so Davy will still get some CHs, just not as many as without.

Oxygen is not a preventive, but an abortive, so Davy will use it when he does get a CH to kill off the CH rapidly.

So the combination of the two will drop how many CHs he gets and for those that he gets, make them go away quicker.

Hi,
Just back from the hospital. First things first Davy has been on 360mg of verapamil for the last 3 months and at the start he thought it was doing some good but hasn't been able to get below 20mg of steroids along with it. So how did we get on at the hospital!!!!! Well as regards the oxygen his doctor reckons Davy's case is so severe that he would have to have the oxygen on him all the time. You see if Davy comes down the steroids below 25mg he has the constant signs of c.h.  Even at the minute he is on 50mg of steroids, 360mg of verapamil and 120mg of propranolol and he still has some pain and the tingles all around the right side of his face. He got another stronger dose of botox today so his doctor wants him to come off all other drugs and taper off the steroids over the next 7 weeks. Unfortunately for Davy the botox takes 3-4 days to kick in. If this is unsuccessful we have a prescription for lithium to try next. I'm a bit disheartened this evening which is nothing new after looking at how down Davy gets with what seems today like no light at the end of the tunnel. I know by tomorrow the light will be back and we will soldier on. I'll keep ye posted on how the botox effects Davy over the next few days. Is it something any of you would have available to you if it worked?  |(As someone said on another post very appropriate for C.H. sufferers)

Oh dear. It sounds to me as if this doc has an agenda, one that includes botox as a primary preventative. Davie does not have migraines, he has CHs. And that is a different sort of beast. The reports on botox effectiveness are spotty at best. As Mike points out the verapamil is still low, and the O2 should not be denied him. They serve different functions, AND many of us have found that the sooner and more often we abort the attack, the attacks themselves begin to lessen in frequency and intensity. Finally, I assume the lithium is in conjunction with the verapamil? That's what I'm doing right now, as have others. This is surely a tricky one but the routine has not been well established yet in Davie. He needs all of the weapons not a few. Push for O2, or get it on your own. It is a vital resource. Blessings. lance

Hi all,
Sorry i haven't been in contact I have been in hospital myself the las ccoupe of days. Minor operation on my hip, on the mend now though. Davy has been stable now for the last week which has been great because he has been looking after me. I spoke to his doctor again and explained to her about the verapamil and what all of you have said. She has now put him back on 360mg and has him tapering down off the steroids. If the attacks continue he has to go up to 480mg of verapamil. At that stage we are going to push for the o2. Davy was talking to our friends father who is on oxygen for something else and said compared to the side effets of steroids he would be quite happy to carry around the oxygen. Richard I  wa reading that surrvey on o2 for cluster headaches and found it very interesting. I am either going to print the survey for Davy's doctor or if we are talking to her on the phone I'll give her the link. The reason we are sticking with this doctor is she has given us her personal number and we can ring her whenever we need. Also she reallly does want the best for Davy. Hope all of you are cluster free at the minute.

Hi again,
Just wondering if anyone gets constant double vision or if they have any problem with what doctors describe as your eye collapsing. Davy had been six weeks with out his eye being completely blanked out or with a prism on his glasses on the right side. When Davys eye collapses his eye turns in towards his nose which causes the double vision.

Hi All,
Hope everyone is well. Update on how things have been going. Davy has been on a high dose of steroids the last couple of weeks and is currently tapering down. He was afraid to go below 35mg  because the last time he got down to 25mg all hell broke loose. There is some light at the end of the tunnel though the oxygen tanks arrived yesterday so we are hoping he can now try coming down off the steroids to give try the oxygen. His eye is still turned in or collapsed which is very disappointing. The oxygen has a maximum output of 15lpm. Just wondering have any of you tried the natural supplements as an added extra to other medications? If you have what have the results been? Thanks Aisling.

Thank you Akina for your kind words. I would to anything to help Davy not be in pain. Unfortunately the oxygen hasn't allowed Davy to come off the steroids and he is actully having to back up on his dose. Also he is on verapamil and so far it hasn't worked either. So the doctors have decided to try Lithium as a last resort. So I have been researching Batch's regime and am very interested in it. I have been in contact with Batch and have tried to source the combination he speaks off. The only problem is that some of the tablets are not available in ireland at such a high dosage so I have to order thm on line.
Big hug right back at you, it is so hard to watch someone you love go through such pain but you keep thinking its nothing compared to what they must be going through.