Name's Topher, 22 living in Denver, I'm a computer programmer and a senior in college. I have an 18 month old daughter named Persia and am recently divorced.

I've been experiencing clusters since I was 15 and over the years they have just gotten more frequent and more painful.

Thought I'd introduce myself. Hi.

Well damned glad you found us. When you get a chance, give us a run down of your routine. What you've used that has and hasn't worked, if you have oxygen yet, etc. Maybe we can steer you to something that'll help, maybe you'll drop a pearl on us.

My youngest just graduated from Regis University in Denver. She fell in love with the town! Welcome to the nut house, sure help we can ease your burden a bit.

joe

Hi Topher-

Sorry you had to come looking for us, but glad you found us.

What if, any, meds are you using for treatment?  Has your treatment changed and perhaps this had made the attacks worse?  

One thing to understand about CH is that they do change.  Never think you have it figured out!

-P.

Hello Topher and welcome home to your nutty family. :)

I'm sorry to hear you're hurting, but so glad that you have found us.

hugs,
:)mel

welcome...Def let us know what your taking.  Maybe we can help

Well, as I said, they have gotten worse over the years. I wasn't officially diagnosed with them until recently, however I do remember weeks of headaches starting when I was 15 but doctors attributed it to sinuses, allergies, caffeine addiction, etc. So of course, nothing really helped.

In May of 08, I had about 3 weeks of excruciating headaches, to which the only thing that helped even in the slightest was marijuana through a vaporizor. This didn't make the pain go away, but it kind of pushed the pain to the back of my mind so I was at least able to function. I quit smoking, I quit drinking caffeine, I started jogging, trying to figure out why I was getting these headaches. Finally, I went to the doctor and she said "Well it sounds like cluster headaches, but I can't say for certain unless you come in with a headache" so she gave me a prescription for zomig and sent me on my way.

The zomig worked as long as I took the pill RIGHT as it started, but if I missed, it was pretty much useless (not to mention way to expensive). A week or so later they just stopped.

The next attack started on the 20th of December, my new girlfriend and I were up in the mountains for the weekend and when we went to breakfast the morning we were coming back I couldn't function.  I was able to drive down the mountain and back to my house. My mother pretty much has a standing prescription for vicodin, so I started taking those at the first sign of a headache (again, like the weed, it doesn't remove the pain just allows me to function). After 2 and a half weeks of these headaches (1-2 a day) I scheduled an appointment with my doctor around the time of day my headaches happen most. I got a call back from her saying she would rather I just go to a neurologist. I convinced her to prescribe me my own vicodin as my mother needs hers and can't be running out.

I saw a neurologist last week, who officially said "Yeah, clusters" gave me some maxalt, frova and verapamil. As it has been over a month since the start of the attack (meaning I should *crosses-fingers* be almost done) I decided save the frova until my next attack as my neurologist said it would only help shorten the clusters if they helped at all. I took the maxalt the next day when it was so bad I couldn't move and man, those things are awesome. Within about 10 minutes, I felt my pain level drop from a 9.5 to a 4. I filled those right away, unfortunately my insurance only covers 4 tablets at $22 a piece). The verapamil is a calcium channel blocker and I can't remember exactly what my neurologist said it would help, but the internet says a side-effect is "headaches", so i'm not sure what to expect from it.

Be carefull brother, your veracity is showing

Welcome to your new family!  I'm in college, too, and it's a bitch, ain't it?  :D  

Have you read everything on clusterbusters.com about the hallucinogenics?  They stop the headaches, you don't have to dose for every attack...in fact, you have to wait 3-5 days between doses for your receptors to reset.  Breaking a cycle is harder than preventing one, so you may have to dose 2 or 3 times to stop the cycle.  AND check the list of counterractive meds- you may be on something that you must detox out of for the mushrooms, seeds, etc. to be effective.

PLEASE stay away from narcotics- they really don't do what you need them to do for CH, and more importantly they cause nasty rebound headaches!!  :o  I do take them sparingly myself, but only about once a week and only because I'm resistant to any other meds.

Also, pot is a vasodilator- one of the LAST things you need right now. You're going to hear a lot about how to properly use oxygen to abort, how to use caffeine and energy drinks, and lots of other great info.  This board is Grand Central Station for the very latest, up-to-the-minute info on CH- soak it all in, my friend!  Good luck!
-Paige

Well college isn't too bad as I knew in high school I would be burned out by now so I took the degree requirements first and am now doing my general ed classes which are cake. Good luck paige.

Have you taken the "cluster quiz" on the link at the left of this screen? Please describe one of your attacks for us. Is it only on one side of the head?

Oxygen used at 100% thru a NON REBREATHER mask @ 10-15 lpm. is the number one abort for more than 70% of us. It must be used at the first sign of the attack.

Don

I took the quiz but it didn't really say anything I didn't already know.

I tend to experience a shadow headache before the actual one occurs. 99% of the time the headaches is behind my left eye, stabbing pain. Almost always the pain behind the eye is accompanied by pain in the temple and forehead on the same side. Sounds that never would have bothered me cause the pain to intensify, same with many lights.

The headaches normally last for around 3 hours or more. Depending on the severity of the headache, I cannot fall asleep. I pace around my office or house, holding my hand over my eye.

Thankfully, I have not yet gotten one so bad I needed to be taken to the ER, however there have been some close ones.

Welcome Topher,
    Amen to the O2, get some.

Verapamil worked fine for me for the most part.  I was taking 360mg per day.

                                 PFD's
                                  JPC

The hardest part about treating CH is patience. Verapamil will take up to 10 days to build up in your system enough to have a preventative effect. My CH started in my late teens, but I never went above a 7 or so on the, the  KIP scale..(see link on left)...wasn't until my mid 20's the beast became an adult and really started to cream me.

Most find the best results using a 2 pronged approach. A good preventative, the med you take every day to reduce the frequency and the intensity of your attacks. That's what the verapamil is trying to do for you. I use lithium, there are many others to try.

Then a good abortive, a headache starts, now what? If you really have CH, they are probabaly going to become more intense as you get older. That's why it's critical you get your arms wrapped around this problem now. 02 should be your first line abortive, for men the success rate is over 80%. If I were you I'd want to get rigged up with this before my headaches progress any further.

If you're going to try the alternative methods, mushrooms etc., it's not something you play fast and loose with. Go to their sites and meticulously follow their systems. They've been enjoying tremendous success, my career choice hasn't allowed me to try those but it's tough to argue with their success rate.

And stay away from weed while on cycle, it's a nasty trigger for many. Hang in there, we'll do all we can to keep you free from the beast.

Joe

Hey another Denverite. I've had clusters since I was 18, (I'm 30 now). It took six years of seeing different doctors before I found out what it was. This is the first year that I've tried shrooms, and I've been pain free since November. I'll be ending my cycle at the end of February. Best thing I ever did.  

Good luck.