When i was 15 i started getting the most painful headaches i could imagine and i was diagnoseed with Chronic Cluster Headaches.  1 year later i have a bit more experience but still in a year-long and continuing Cluster Headache bout.  I get headaches about 3 times a day almost every day of the week, and frankly its been ruining my life.  I've missed dozens of days of High school because of them and on most days I've literally been to scared to leave my house to hang out with friends. 
I visited a neurologist and he first prescribed me Topiramate. I've been on 150 mg of Topiramate  until recently were we decided it was clearly having no effect on me and i stopped taking them.  About three months ago i visited a neurologist who had a specialty in headaches and he told me to start taking Verapamil and a 2 week cycle of Prednisone.  Immediately There was a significant difference. In those two weeks i had little to no headaches and none of them were ever as painful as the ones before which i would writhe and scream in pain.  Once i started tapering off the Prednisone there was another significant difference, i started getting the really painful headaches again and headaches 3 times a day. 
So now i have a dilemma, 2 months ago i started taking Prednisone again but only 20 mg because Prednisone is a steroid and has risky side effects and my doctors really want me off it.  The Verapamil has not helped me at all after 3 months of taking it 160 mg 3 times a day.  So a week ago i started tapering off the Prednisone very slowly by only taking i 2/3 days, but immediately there was a difference and i get those really painful headaches again.  Oh and by the way i do take Imitrex as an abortitive means and oxygen does help with the less painful headaches.  My dad does have a history of normal migraines.  So now me and my doctors have to discuss the dilemma and find a solution.  In the meanwhile, i was just prescribed me a new prescription called Melatonin so we'll see if that has any effect. 
So thats my story hope it may have helped some of you and please leave suggestions and tips if you have.

You might want to suggest to your neurologist a combination of lithium carbonate and verapamil. It's called the "chronic cocktail" by insiders because it will give relief when used in combination where either one by itself does next to nothing.

My magic recipe was 480mg verapamil and 900mg lithium carbonate per day, and it worked very well to keep me pain free for years. Everybody for whom this works has different levels that work, and you only want to take as much as you need. Taking lithium will require close monitoring of your serum lithium levels as the line between therapeutic and poisonous can be a very thin one.

Thanks for replying guys,  i actually just visited my headache specialist today and he said that i should stay on 20 mg a day for prednisone as it does give me some relief.  He also said i should try lithium with Verapamil and he also put me back on topamax because of the dramatic change after i got off the prednisone and topamax.  i will be starting the lithium in a month as i am going on vacation for a month and he said its better to start while i'm present because lithium requires blood tests.  i'm a little bit worried about the prednisone, for the one month i took it i have already gained some weight but my doctor said that its nothing to worry about just yet. So hopefully the "chronic cocktail" will work.
Once again thanks for replying,

Lior

My god, my heart goes out to you! I was 12 years old when I started having Cluster Headaches and it disrupted every aspect of my childhood. I am so sorry you have to deal with this.

I have been on just about every medication under the sun. My best results were with Lithium and verapamil. I also use Imitrex Injections and Oxygen as abortives. The down side of all these meds is that they don't make you feel too good. How ever, not feeling too good is a heck of a lot better than the feeling of a cluster headache!

I hope you can learn to manage your clusters, hang in there you have a long road ahead of you.

In retrospect, I had shadows in my teen years.... I referred to it as a 'cloudy' feeling, but I didn't get a full hit til I was 26.

Stay strong, man!  Be patient, educate yourself and find a good doctor.

djphrenzy wrote on Jan 20^th, 2013 at 11:24pm:


I think I did too. I remember periods where I had a dull pain that would never go away. I took many Advils, though it didn't help. My mom thought I was having headaches because of an Advil addiction... Then it would pass, to come back months later. My first hit was at 17.