Hi all!  I am pretty new to these headaches.  I had an MRI Monday and it came back normal...thank goodness.  But, that means I definitely have CH :(

I am going to see my doctor in the morning to discuss treatment options.  I am definitely going to push for the oxygen.  My question is...what is the best preventitive medicine?  I would love to hear some opinions on this.

I don't like putting chemicals in my body if I don't have to...I've always been this way.  Anyone had any success with natural herbal remedies or acupuncture?  

Thanks,
Pamela

Just responded on your other thread before I saw this one. Everyone knows the very best prevent is......whatever works for you! ;) Sadly, that takes some trial and error. Lithium proved my silver bullet. I tried verepamil  in the 80's at what I now realize was way too low a dosing, 120 mg  day. Some people go as high as 960 mg a day on verapamil to get relief. Then there's Topomax, called dopeymax by it's detractors, and a miracle prevent for those it works for!

It can be along and frustrating road but well worth the effort when you find the med that works for you!

Joe

On the left is an informal survey about effectiveness of various meds.

I've so rarely seen statistics on this issue that we are left only with individual experience reported here except for this one report (follows).

Verap. has the longest track record for effectiveness and would be the starting point for me.
======

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).

If you're looking for natural, go to START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE .  It's as natural as it gets, however you must mentally prepare yourself for those options since they are hallucinogens.
It's natural, cheap and has kept me cluster-free for 1 year which is the first time this has happened in all the 16 years I have had them.

Thank you all for the replies.  I went to the doctor yesterday and he put me on Prednisone.  I'm not looking forward to the nasty side effects, but I hope it will end my cycle.  I started taking it this morning.  I am also getting the o2!  Found out my insurance will pay for it!  

The beast didn't visit any last night or any today.  First time in a long time I've gotten some good rest.  Maybe my cycle is ending?  Or maybe it's a fake out?  Who knows?  Thanks again for all the advice!  I really appreciate it!

Pamela

Pammykm wrote on Jul 17^th, 2009 at 6:02pm:

Thank you all for the replies.  I went to the doctor yesterday and he put me on Prednisone.  I'm not looking forward to the nasty side effects, but I hope it will end my cycle.  I started taking it this morning.  I am also getting the o2!  Found out my insurance will pay for it!   The beast didn't visit any last night or any today.  First time in a long time I've gotten some good rest.  Maybe my cycle is ending?  Or maybe it's a fake out?  Who knows?  Thanks again for all the advice!  I really appreciate it! Pamela

Does your doc have you taking another preventative such as lithium or verapamil at the same time? Prednisone is used as a transitional med, to end or reduce the hits while a long-term preventative builds up to theraputic levels in your system.

You'll only want to take it for 10-14 days, and be forewarned - it rarely "breaks" a cycle. It works great for the time you take it, but you can't take it very long.

Yeah...what Brew said. Prednisone, at doses as low as 20-30 mg a day, provides a 100% block for me. I use it for a 10-14 day transition period while I'm waiting for my lithium to kick in. There is a small minority for whome prednisone will "break" a cycle. I'm not lucky enough to be one of them.

What Brew is warning you about.......if you're like many, pred will block the CH but as soon as you go off it comes back with a vengeance! Have the 02 close by when you get back down to the 20 mg a day dosing in case it breaks thru. If it does, I'd print out the info Bob gave you on verapamil and talk with your doc about that,.

Crossing my fingers and hoping the pred breaks it for you. ;)

Joe

Brew- no, my doctor didn't put me on anything else.  I have another appointment with him in two weeks, so I will talk to him about that then.  

Joe- thanks for letting me know about that.  I will definitely talk to my doc about it.  I will ask about the verapamil...seems like it works great for a lot of people here.    

Hi guys,

I'm new here too but not to clusters.

Is verapamil a blood pressure med?

Yes verapamil is a blood pressure medicine.

For me, I have found Kudzu to be a wonderful preventative.

Thanks Karla.

At such a high dose doesn't it lower blood pressure too much?

I'm on it and the doc doesn't want to add more. We went from 180mg to 240mg a day.

Campergal, Verapamil is a blood pressure medicine. We take it at doses generally much higher then the BP patients use it for, it's had a pretty good track record as a preventative for CH. As with everything else we do, it requires working closely with your doc to figure what the correct dosing for you is.

Joe

Verapamil's primary use (i.e., what it was developed for) is angina.

Thanks guys about the verapamil. I'm on it for blood pressure and the doc doesn't want to increase it or it might lower me too much.

I guess this means it's not a preventive for me.

Some on the board have found the combination of verapamil and lithium to be an effective preventative. Would be worth asking your doc, I don't think lithium has a significant effect on the blood pressure but I'm sure your doc could find out.

Joe

Thanks Joe,

Does lithium have any side effects? I think I've heard some not so good stories about it? I could be wrong. :-[

The only thing I noticed about being on Lithium was having to pee a bit more often and being a bit more tired than usual - nothing a bit of coffee coffee coffee won't solve!!  My experience only -
It was one of the better meds I tried as far as side effects.  HA (oh yeah and you have to go in for blood draws until you settle on a dosage - make sure your lithium serum levels aren't too high... you can't be deathly afraid of needles)  :P

Val

I'm glad you can handle the med.

My veins aren't good for stuff like that so it's such a pain. Last time they did it wrong and caused my hand to swell....they goofed! It was scary to see a bubble. Later it turned all sorts of colors and tender.

Thanks
Have a good day :)

campergal wrote on Jul 20^th, 2009 at 12:55pm:

I'm glad you can handle the med. My veins aren't good for stuff like that so it's such a pain. Last time they did it wrong and caused my hand to swell....they goofed! It was scary to see a bubble. Later it turned all sorts of colors and tender. Thanks Have a good day :)

Just tell them exactly that, and request the most experienced phlebotomist on their staff. Your chances are better that way.

Lithium and methysergide maleate are my two main preventatives. I've already settled on 900mg per day as my effective dose, so my doc only requires checking lithium and creatnine levels once a year.

I used to do the lithium / verapamil combo as described above by Joe, but found after awhile that Mr. Verapamil and Little Elvis did not play well together, if you get my drift.