Hello everyone, my name's Nico and I'm from Costa Rica.

I'm 26 years old, measure 173cm and weigh 160lb. I've been suffering from these horrible symptoms for about a year and half, with almost no pain-free days (the longest I've been without pain is about a month or two). I am currently under supervision of a neurologist who helped me discard any aneurysm or growth in my head through an angio and CT scan, and agrees with my pre-diagnosis that these are indeed cluster headaches.

I've self-medicated Aspirin, Ibuprofen, Paracetamol and Tramadol in attempts to abort attacks in the past, but they didn't work fast enough (they could help mitigate rebound attacks later during the day), which is why I went to my neurologist. He gave me some Maxalt RPD (rizatriptan in immediate release form) and that did work wonders (it would arrest an attack in about 4-5 minutes), but it is unfortunately extremely expensive where I live... around $12 a dose, and taking multiple doses during a day or two would eventually kill my wallet in mid-month.

A friend suggested I try Enantyum (dexketoprofen trometamol) in powder-form and I gave that a try... seems to help a LOT when I take it early during the onset: the pain is noticeably easier to manage and the pain goes away much faster. At $3 a dose, Enantyum is currently my analgesic of choice when I get hit.

My doctor recently put me on Melatonin (6mg at night), and it seems that ever since I'm not getting the 3-4 am attack that I always fear the most. In a couple of weeks, I will be testing Verapamil in daily 80mg doses (at the doctor's prescription) to see if that helps space the frequency of attacks long enough so I can function somewhat more normally.

I've done a lot of reading online about Cluster Headaches and found this forum. I've lurked on and off for a while now, and thought it was time I introduced myself to the community. I'm happy to find such a supportive place, at the very least I know "I'm not alone anymore".

I usually prefer watching these forums rather than frequently participating, but you'll see me jumping in and out of threads

I wanted to attach a picture of me, but got the following error:
"With this file nico.jpg (134 KB) you exceeds the maximum allowed upload-directory volume." What does that mean?

Peace,
Nico.

Hi Nico & Welcome to Clusterville

  Glad you have a doc you can work with.  I'm not familiar with Enantyum, but I'm sure someone will be along with more info re that particular med.

   Verapamil did the trick for me after I came here (2/02) as a preventative.  It's a taper drug and your doc should up the dosage til you reach the level that's right for you.  I had my first PF day in over a year when I reached 240 mg (had 3 attacks that night, but had 02 to kill them) . . . but it was a WONDERFUL day . . . finally had some control.  Got as high as 480 mg (many take considerably more and sometimes combined with other drugs like lithium). . . then settled on a maintenance dose of 360mg per day.   I quit the Verapamil four years ago due to other medical problems and uncomfortably low BP . . . . now rely on water treatment (see "water X 3" . . link on left) as my preventative (it IS NOT easy to do) and oxygen as my abortive.

  You're going to read a LOT about 02 . . . that's because it works for 70%+ of us when used correctly and at the first sign of attack . . . it's also CHEAP if insurance won't cover it.  Welder's oxygen is the same stuff and available just about anywhere . . . should be your first-line abortive.  Correct flow-rate and proper mask is essential for best results.

  Many here use Melatonin with success . . . I still keep a supply on hand.  6mg worked for me fine, though several use 9-12mg. 

  Very glad you found us.  Keep reading, keep asking . . . you've just joined a family of folks who truly do understand the pain our beast can inflict.

  Be Safe,  PFDANs

    Richard

The verap. dose is too low. Print this article and give to your doctor.
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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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Suggest that you print out the first of these two articles and us to discuss treatment options with your doc.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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AND stop the pain meds. As you have found they don't help with cluster and continued use will create new problems.

Quote:

Far be it from me to question a doctor's prescription, but Bob is right on the mark with this one. You'll need to take 3-4 times what he's prescribed to gain any preventative relief. If your heart or blood vessels don't allow you to go that high, you may need to look elsewhere, like lithium.

Go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or and welcome. Coach Bill

Hello Nico and welcome here.

Everyone has given you great advice, so I will only add my personal take on Verapamil.
For me, it works at 480 though there are people who need to go as high as 960. It takes up to two weeks to take effect.

Wishing you painfree time very soon from the Netherlands, Pascal.