Hello my fellow Cluster-Heads,
I have been following this site for 4 years now and decided that it was well and truly time to join.

I have been suffering from chronic cluster headaches since I was 16 years old. I am now 20. I was diagnosed by my neurologist in Sydney and have tried 30+ medications in total - nothing has worked. I don't know why, but for some reason all the normal medication (Oxygen, Triptans, Verapami etc) just doesn't have any effect on my headaches.

A year ago a Dr. prescribed me OxyContin. My tolerance quickly grew and as a result I am now writing this message to you in a private rehabilitation clinic. This damn drug, whilst it does work for me, is extremely addictive and cannot be taken long term.

Too be honest, I'm at the end of my tether. I'm suffering from deep depression purely as a result of the endless constant pain. In one sense I am lucky in that I only get one headache each day, and it's not at night. I get them at least every 2nd day and the pain is just unbelievable. By far it's the most painful thing I've ever experienced. I can only describe it as having a knife repeatedly stabbed in my eye for an hour and 30 mins. I'm then left with a shadow for the rest of the afternoon.

So in summary, I've seen 2 neurologists (including 1 who specialises purely in CH's) and nothing works with the exception of narcotics. I completely understand it's not viable to take OxyContin long term and I'm weaning off it as we speak. I don't work as not many jobs permit you to take 2 hours off in the middle of each day.

Maybe one day these things will end... Until then I'm destined to spend each day in agony. I wish I could be more positive but like I said, I'm rapidly reaching the end of my tether.

Alex P

Alexander wrote on Aug 11^th, 2010 at 12:59am:


It would have been good to read that having seen two neuros, one CH savvy, an MRI has been done due to:

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when the described CH is:

Quote:



Describing constant pain and triptans such as Immitrex not working can be unusual, too.  With the other meds mentioned, verapamil use can be a long experiment with the amount needed for effectiveness, and then there's different acting kinds.  Then maybe it's just not going to be the preventative for you.  Some being successful working in lithium with it.

Agreeing with the reply above, oxygen use requires all the correct checklist of equipment and also has needs to be tried to an uncommon high ranging flow.

During those four years, interacting with experienced CH'ers may have been beneficial, as you may now realize interacting daily with experienced addicts recovering can be, but so we must learn.  Remember, rehab doesn't end when you're released, follow-up.



It's all proactive.

Hey Alex! Welcome. And my friend, continue to do the hard work of rehab and breaking free from the use of narcotics. We all understand the lure, and the frustration, of not having something that works. Do check out the O2 links, and the advice on energy drinks, melatonin, etc are dead on target. If you have the inclination, why not write and let us know what you have tried and in what amounts? As mentioned above, finding the dosage can be as critical as finding the preventative and abortive. Blessings. lance

Mate, all I can add is that you can phone me anytime on 0406 068 295.

Only better daze ahead,

Brian up north.

Welcome,

Sounds a little bit like rock bottom.. But not quite.
Get off the oxy and other script narcs.. If your chronic then im sure if you take enough oxy or whatever, you will pass out and escape for the moment.

Sounds like you need to figure this cluster thing out, You need to learn about it and all its treatments, not just what you learn from the doctor. If your only 20 you got plenty of time to get it all down pat. If not, the bottom will get closer by the minute.

This is the last thing a clusterhead wants to hear but, you need to pick ur self up, get ur weapons in order and start fighting for control of your life.

Coach Bill