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Message started by Lynda on Jul 21st, 2011 at 3:18pm

Title: New to Forum
Post by Lynda on Jul 21st, 2011 at 3:18pm
I have suffered from Cluster Headaches since 1975.  In those days no one knew what they were, or simply said it was a migraine.

I am live near to Birmingham in the UK.  I have been with my current doctor for the last 25 years, when he was on holiday and I suffered a cluster attack, his stand in doctor said he thought it was a cluster headache.

You all know how awful these headaches are.  Mine start in the middle of the night, my left hand side of my face goes numb, my eye droops and I feel like smashing my head open against a brick wall just to have a different pain.  It is like a red hot needle slipping down the side of my head into my ear.  This can go on and on and on for days, with periods of relief in between.  Then I can go a couple of weeks before the next attack.  I fear going to bed at night wondering if one will start.  There is never a trigger to the attacks, they just come on without any warning.

I was immediately referred to a Neurologist who ordered oxygen at a flow rate of 15.  I take Verapamil 80mg x 3 daily and Prednisolone 40mg when I have an attack and injection of Imigan which does nothing.  I also take high dosage 500mg co-codomol for pain relief.

Lynda

Title: Re: New to Forum
Post by Bob Johnson on Jul 21st, 2011 at 4:05pm
Thanks for joining us. I'd ecourage you to look at your excellent support group:  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
This is a strong group and they can help you in working with your health care system.

You outline of treatments reveals some fairly consistent differences between our two systems.

1. Prednisone is commonly given at the start of a cycle with a starting dose around 80mg and taper down over a few days. That will, generally, stop the cycle cold for the time needed for the longer lived preventive to take hold. A common used protocol for the most often used preventive:

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.
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We are dead-set against using pain meds except in rather extreme situations since: they are not very effective with Cluster & the potential for rebound headaches is significiant. Hence the approach: abort quickly; then long term preventive meds.

RE. ineffectiveness of Imigran/Imitrex (here). One consideration is using it at the earliest sign of an attack. Waiting for its development (is it the real thing?, etc.) is the most common source of failure for a med which is abou 80-90% effective.
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As you have specific questions, please post them. Reading our site deeply will be a source of information and hope. We have a pretty energetic bunch here!

Expore the buttons (left)  starting with the OUCH site.
As time permits:

A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE Search under "cluster headache"
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Finally, be aware that you have a right to obtain treatment from any headache clinic of your choice. Here, your local group can be of much value.
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Print out the PDF file, below. It's the latest evaluation of commonly used meds for Cluster. Nice to use as a tool to discuss options with your doc !

Best wishes,

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?action=downloadfile;file=THERAPIES-_Headache_2011.pdf (96 KB | 16 )

Title: Re: New to Forum
Post by JustNotRight on Jul 21st, 2011 at 4:13pm
Welcome to the board Lynda!

You mentioned you are taking co-codomol for pain relief, You may want to get off of that asap as it can cause extra CH hits.  Pain medications and CH don't mix well.

Here is a list of herbals/supplements that may give some relief.  Keep in mind they will not be nearly as affective as actual prescription medication and abortives.  As Always check with your Dr before adding any supplements or herbals.

Omega 3 Supplements 1000mg

Tanquil- (contains Humulus Lupulus and Valerian root extract)
This can also help get you through the night and can help avoid night time hits.  (I don't use this as much anymore just occasionally since I am overly sensitive to some herbals.)

Cetrizine/Zyrtec = over the counter allergy medication, taken before bed by about 1 hour it may help him get through the night with no hits and some decent zzz's. Found in most any grocery, drug, or walmart store.

The above are items I use.  Along with my regular prescription medications.


Others here also use...

Taurine - found in energy drinks (stay away from high acidity energy drinks if you have ulcer issues) such as redbull **there are others.     Taurine Combined with Caffeine/coffee works in many to help kill a CH hit.  You can also find taurine supplements at GNC or buy it off the internet, however if you use the internet you will be waiting for at least a week to even get  your shipment.

Kava - Herbal also found at GNC

Melatonin : take 1 hour before bed- GNC

Vitamin D2 supplements

Magnesium - GNC

Hot or cold wet clothes to the head during an attack- depends on sufferers preference.

Title: Re: New to Forum
Post by wimsey1 on Jul 22nd, 2011 at 10:33am
All I would add is your O2 rate is the bare minimum for hyperventilation necessary to abort. Many of us have better results using a 25+lpm flow rate. Read the link at the left for some helpful hints. Blessings. lance

Title: Re: New to Forum
Post by Guiseppi on Jul 22nd, 2011 at 10:58am
Welcome to the board Lynda. You've been given some great advice, keep reading the board. An educated Ch'er hurts a lot less.

Joe

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