I am an FNG to the board, been part of the 'club' since mid teens, now I am 34 (next month)  Has anyone grown out of these?  Please?  Need hope! 

I found this site a few years back but haven't had any interaction on the boards.  Having a "short" cycle once a year, I didn't think that I had too much to add to the board.
Since seeing a Neuro Dr that works at our medical group once in a blue moon I returned to research what he suggested.  I think I am going to join the Topamax club since Sansert isn't available anymore.  My CH cycle is about 3-4 months out of the year, during that time I have around a month of 9-10s.  Very lucky by some standards.  By the looks of my 2007 (and only) diary, my cycle started in September.  I have had a few days of 1-3s and one full day of a 2-3.  Nothing today, thank God!  I just know that my cycle is getting ready to hit.

I have tried Imitrex and Toredol (sp?) in the past with zero help.  It just made me real tired with a real bad headache.  I was finally diagnosed in 2000 by an Army doc.  He put on O2 for 15 mintues and WOW!!!   I LOVE IT!!!!  I am lucky enough to work in the medical group so I can get O2 while at work.  Now, I would like something that would do away with them (yeah, like everyone else!) or at least lessen the hit.  Since I can't take O2 with me everytime I go TDY (travel for business) and would like something to get me through.  The side effects of Topamax suck, period.  I am hoping that my Dr will be OK with very low dose (25mg once or twice a day) until a no kidding hit and then ramping my up to whatever....100mg (50mg twice a day?). 

From the Topamax junkies, any suggestions?  I am going to tell myself that I won't have any side effects, except the weight loss!  Maybe mind power will 'will' them away.

After re-reading this it seems like a ramble (so Topamax should be fun, right?!)   

Derek P
Cabot, AR    

Hi Derek, and welcome.

I did take topamax for a short while and the side effects were devastating for me. Had to stop to have a normal life!

Bob suggested Verapamil, and I agree (great suggestion Bob). The side effects are minimal and worked really well for me to lessen the severity and intensity of the attacks, as well as shorten the length of the cycle. Mine last as yours do: 3-4 months and Vrap worked really well as a preventive. It takes a while to get into the system, but you're well covered with the o2 as an abortive. Good for you that you have easy access!!!

There are others here who have great success with dopeymax, and you'd be well advised to listen to their experience as well, but listen to your body first and foremost.  Keep an open dialog with your docs and you'll find the meds that work best for you.

Sorry that you're dealing with the beast, but I really like your positive attitude toward fighting back. 

Bob gave you some great reading to do, will get you up to date on what your options are. When I'm going some place where I won't have 02 I use imitrex injectables.

I'm 48, they haven't quite yet, sailpappy is 163....(or there abouts! ) and they haven't stopped yet. Some do lose them with age so there is always hope!!!

Guiseppi

Both dosing, form of the med, and time are important variables when using Verap. See if this information gives you some new ideas:
========
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.

Bob, that is good reading!  A lot to coordinate/track but worth a shot.  I might try this t-max for a couple of months since I have it.  I might look at v-rap if this doesn't work.  Are you able to use abortive O2 while determining your v-rap dosage?