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.   

Ouch, 16 and battling CH, that borders on unfair. :-/

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This is the oxygen info link, read it to make sure you are using it correctly as minor changes in HOW you use it will dramatically affect the speed of your aborts.

Go down to the medications section on our board, and read the topic "123 days PF and I think I know why." It describes a simple vitamin/mineral/anti inflamatory regimen one of our more reserach minded members stumbled on. All over the counter items, cheap, certainly worth a shot as it's helping many reduce the number and severity of their attacks.

Melatonin is used by many on the board. For some it only helps with the night hits, some it helps day and night, some it doesn't help at all. The nature of the beast.

Prednisone.....yeah...be very careful witht hat one. We call Pred a transitional med. It provides 100% relief for me at doses as low as 15-20 mg a day. Long term use...especially in someone as young as you, can really wreak havoc on your body, organs joints etc. I do a 2 week taper on pred when my cycles start, at the same time I go on my prevent, lithium. Lithium takes almost 2 weeks to become effective, pred buys me some time while that happens.

If you spend any time on these boards reading, you will find in a short time you will be a 16 year old who knows more about CH then most doctors. CH is rare, so it's incumbent on you to educate yourself, and work with a good doctor to find a long term management program to keep beasty under control. If it is CH you suffer from, it's most likely a lifetime affliction. No magic pill yet to cure it, no one size fits all treatment to manage it. Just trial and error and patience to find a way to keep beasty under control.

Glad you found us, good on you for being pro active and reaching out to us. ;)

Joe

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.

And I almost missed your name...Hugh Jass ;D  It's early in the morning, brain not fully functional yet!

Joe

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

Yeah the first time you go on lithium it requires several blood draws as they slowly build up the levels to see how your body processes it. After that you just go back on it, and in a couple weeks go in for a single blood draw. Hope it proves the magic prevent for you that it's been for me!!!

Joe

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.

I can remember my first real cluster hitting me at when I was 15, in the 9'th grade. They always came randomly at that time, though; never a cycle. My first cycle didn't come until I was 19 and in my freshman year of college.

Keep your spirits up and keep looking for answers. There are so many people on this board who have fought this thing for decades- you're going to find something that can help you- and at the very least people who understand your situation.

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.

Wow, I am sorry to hear you have this so early on in life.

I hope you'll find relief soon. My advice is to read as much as you can on what helped others. Some things work for some, and not for others, so you might have to try a few things before you find what works best for you. Also, when you try something new, don't give up right away when it doesn't work; it might just take a little longer before it takes effect.

Don't give up. There will always be people here to listen if you need to talk. I know I found it hard in the beginning, but as long as I have people in my life that understand and support me, it gives me strength. Hugs,

Jess

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

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.

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.