Hello Everyone,

This is my first post here.  i'd like to thank thoseresponsible for these boards...they are of great help!

I have been a victim of cluster headaches for more than 22 years.  They usually hit me once a year, and the cycle lasts for 2 months.

The latest cycle started about 2 weeks ago, shadows and getting the general aura that I so well know. dreading the coming months.

I have not had any monsters yet, but I've been close. the episodes seem to be shorter than in previous cycles - which is a good thing but I do sense that they are starting to warm up.  so I went to see a neurologist today and he proposed the following : Convulex 500mg / day for 30 days and Dexamed (cortisone) for a week and tapering down after that.

Has anyone ever taken these before and how successful have they been?

appreciate your feedback.

thanks,

I hate to bury you with a lot of info at first bite.... ....but print this out and show it to your doc........:


This is a commonly used protocol:

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.



Joe

Hi and welcome

I'll echo Joe's comments about his observation on the apparent CH knowledge of the neuro you saw. It's really important to work with a headache specialist who has experience of working with CH as this is a pretty specialised area of medicine and far too many doctors, even neurologists, just don't have the skills required.

The vitamin D3 route is a good option, it is what has enabled me to go 2 years since my last CH, with others going over 3 years. It has about an 80% success rate, so hopefully it will work for you too.

In the meantime, Red Bull or any other energy drink with taurine and caffeine (it needs both), will help, just drink it rapidly when you feel a CH starting. Don't stop to savour the exquisite (!) taste.

For info about oxygen, read up - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . It is one amazingly good abortive. I can kill off CHs in under 5 minutes using a flow rate of 25lpm and a non-rebreather mask.

I'd skip using any pain killers. Even the strongest narcotic pain killers don't touch the pain, take too long to start working and have issues with rebound headaches plus addiction. Either use oxygen or look at imitrex injections.

You also asked about using verapamil whilst using D3. Yes, you can do this, just make sure you take any calcium supplements multiple hours before / after verapamil as they can interact. And be careful about doing multiple things at once as you'll have no idea what is actually working or not.

thank you guys!

what are the side effects of verapamil?

I will go ahead and start the D3 tomorrow. so just to double check and to make sure am doing everything right , this is what I will take :

Omega 3 Fish Oil - 1000 to 1200 mg/day
Vitamin D3 *        - 10,000 IU/day
Calcium **           - 500 mg/day
Magnesium           - 400 mg/day

Do I need to add anything else?

I've read somewhere on another thread here that someone cut out magnesium from the intake and things improved for him.  should I take it or cut it out?

thank you!

Send a PM to Batch with specific questions about the regimen, he's a great guy and will answer you very quickly. The only side effect I had with Verapamil when I used it was impotence.  I was in my 20's and even at the lower doses Elvis just didn't wanna wake up and play! Like the pain wasn't enough beasty had to take THAT away from me too!!!! One of the reasons I eventually switched to lithium as my prevent. Like all side effects they're not universal, trial end error is the route you have to take!

Joe

Sounds like you're having a rough time.

Be careful about trying multiple new things all at once as you'll have no idea what works and what doesn't. Yes, I know how tempting it is to try everything to get something to work though.

Be very careful about using steroids for anything but the short term as they can introduce a lot of other problems. We normally just use prednisione for a 10 day (or so) taper dose to enable a longer term preventive to build up.

Botox has limited results with CH, not much different to a placebo in trials, although it can work well with some people for migraine.

Hi,

I went to a new neurologist last week and he advised me to stop my depakine. taper my cortisone. and started me on ISPOTIN Verapamil 80mg x 3 times daily. (with all confidence)

the tapering down of the cortisone was horrendous. but I went through it. and have for the past 3 days taken only the verapamil as prescribed ( so now 8 days on verapamil in total)

yesterday and today was hit with headaches. yesterday while driving and today during a long flight.  took imigran for both. not sure if they actually worked or pain stopped alone.

as soon as I landed I called my doc and he told me to go back on the cortisone (12mg/day)!!! with verapamil .

isn't the verapamil supposed to take over now. why do I have to go back on the cortisone. from these message boards, people are raving about the effects of Verapamil.

pls help... should I stick with only verapamil or should I add the cortisone back. maybe my headaches are rebound headaches from stoppage of cortisone coupled with imigran as an abortive.... running out of ideas here… thanks

thanks Mike,

I have no other health issues.  I do not want to go back on the cortisone , and ill talk to my doc to raise the verapamil dosage.

thank you!

I hope that helps, but give it enough time to become effective (10 days) and then re-evaluate the results.

Given that you're still getting some symptoms, even though they are mild, it sounds like the cycle isn't over just yet. So I'd wait until all symptoms have gone, then you can consider starting to taper off your preventives. If when you do this symptoms return then stop tapering off.

One other option is the beer test. If you think the cycle is over and alcohol triggers a CH then try a beer to see if you get one. Obviously have abortives to hand when you try this.

Hi Mike,

did the beer test and it was clear my CH is still around. no major attack but def. discomfort.

will re due in another week.

does  Verapamil extend the length of the cycle ?