Hi, my name is Matt.  I am 22 years old.  I searching for whatever information I can find on treating what I believe I have, which are cluster headaches.

I have seen a neurologist, whom after ruling tumors and other causes out, has diagnosed me with CH.  I think he's correct due to the fact I experience every symptom known as stemming from having CH.

I first got clusters back when I was in high school.  That cycle lasted about 3 weeks.  It was a time of a lot of stress due to school and applying to colleges so I didn't think they were anything more than stress-caused headaches.  Then two years later, while in college, I had another 3 week cycle.  During this cycle, I sought treatment and was given a prescription for vorapamil and Relpax.  The Vorapamil had no effect so my doctor discontinued it.  The Relpax though seemed to really ease the pain but I had to take it at the right moment ... literally.  If I was a minute too late, the headache came full strength.

And now, its been another two years since that second cycle and the headaches are back.  I have just completed my first week of them.  I am on Relpax again but I want something else.  Yes, the Relpax stops the headaches as they occur but nothing is stopping them from occurring, prior to them occurring.  I'm going nuts here.  I can't sleep.  I'm worried to go out and have a life because if I get an attack, I'm done for.

I need to know what to do.  I'm so glad a place like this website exists because no one I know really seems to understand what this feels like.

G'mornin Matt,

Welcome to the community...sorry you had the need to find us though!!

Since you didn't mention O2 therapy in your post, I would urge you to explore the info under the "oxygen info" tab on the left nav bar highlighted in yellow.  It has been a "game changer" for myself and many, many other sufferers on the board!!!

You might also want to check out the information on the clusterbusters forum regarding the use of "alternative meds" and what seems to be the most effective treatment with which to treat CH thus far.

Welcome Home!!  Sending PF thoughts and wishes your way!!

Dallas Denny

MBB wrote on Jul 11^th, 2010 at 9:56pm:

The Vorapamil had no effect so my doctor discontinued it.  I am on Relpax again but I want something else.  Yes, the Relpax stops the headaches as they occur but nothing is stopping them from occurring, prior to them occurring.  I'm going nuts here.  I can't sleep.  I'm worried to go out and have a life because if I get an attack, I'm done for. I need to know what to do.

Welcome, Matt. And sorry you need to be here. Dittos on the O2-done properly its the best abortive. Read, read and keep reading. This site has an incredible community of fellow sufferers who have found some things to work. We know how terribly terrifying the threat of an imminent attack can be. Here are just some tips:
1. try an energy drink (one with 1000mgs of Taurine) at the first sign of an attack
2. consider adding a nightly routine of melatonin to your list of preventatives (9-18mgs)
3. read about the therapeutic levels and uses for any abortives or preventatives (like verapamil) since the therapeutic and off label use can be much different than its normal range and use

Try not to be discouraged. Take comfort in knowing we are all here. Hang in there and keep on believin'! lance

Hi Matt and glad you found us...

Most of us would you use a combination of medications in treating Ch's. Preventitive meds include Verapamil, lithium and Topamax. These are normally taken in cojunction with a steroid taper as some can take a couple of weeks to begin working on your system. If sucessful they should reduce the number of attacks you get on a daily basis. For me personally once I take the steroid taper I will get no attacks for that period but once I'm close to finishing my taper they come back with a vengance.. :o.

There are also a number of abortives available such as 02 as the guys mentioned and imitrex injections. For a vast majority these abortives will kill an attack from escalating very quickly. Gather as much information as you can so you can work with your doctors on the best treatment for you as an individual.


You may also want to visit the site START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE as they have had extremely positive results in treating CH's.



Lefty