Let me intro myself, my name is paul and I live in Newport Oregon and been fighting the beast for about 13 years which makes me about 35. With this cycle which started 6 days ago, I have been trying hard to not touch my head or neck when they hit and it seems to be keeping them down at around a 7 compared to banging my head and rubbing my neck at a 10. Has anybody else experienced that or am I just at the beginning.  If one more person tells me that I need to think positive and try not to dread the next attack, I think I will come uncorked completely.  So I have tried neurontin, verapamil, and prednisone, and I was wondering about trying lithium, topamax or valproate and was wondering what results you all have had.  Or what about the sinus busters or Zomig?  Won't be able to get o2 until tommorrow and have had one trex inj today so time to pray harder than normal.  Anyway thanks for your replies today and look forward to more communication.  

Hi Paul,

Welcome to the board. There are lots of folks who've tried different meds - it may be worth checking out the meds board because you may find the answers to your questions there.

You may also hear the words 'positive' and 'don't dread the next attack', but you have to realise that these words come from people who know what you're going through and know what hell it can be. But we're a family here and we just try to keep supporting each other and keep each other going. I'm not going to say that, for fear of 'uncorking' you, but what I will say is read as much as you can here. There's tons of info around that will help.

Let us know when the o2 comes. There are a ew experts on the subject around who'll be happy to give you a few pointers.

Em
x

Sinus buster?.....LOL ;D

My cocktail was 480 Verap and 600 Lith a day.......It gave me my life back!

I agree, its hard, if not impossible to have anxiety regarding the knowledge that your next attack can happen at anytime. I clutch my trex for months even after the cycle has passed "just in case".

I think you'll find some relief with the o2, make sure you check out the cluster mask, it definately makes a difference for me.

Cheers.

Sean........................

Welcome to the fold but sorry it has to be because of this horror. Lots of good stuff here and here is what I used pretty successfully most of the time:

                                         Dr. Wright’s Circulatory Technique:

I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

Charlie      

My routine for comparison purposes! I'm 48, about 30 years worth of CH, episodic. When a cycle starts I do a 2 week prednisone taper while starting back on lithium. Over a 4 day period I ramp up to 1200 mg a day of lithium. Once Ive been on lithium about 2 weeks it blocks about 70% of my attacks.

For break thru attacks I use oxygen, combined with oral cafergot. I'm one whose headaches come right back when I shut off the 02, the oral cafergot keeps it away after the 02 beats it down. Ever occasionally I go with imitrex jabs when I'm really getting creamed.

Just relax, it's only a headache! ;) Hang in there, wishing you a short cycle.

Joe

Being episodic, I detox correctly after my cycle is over and stay drug free until the next cycle.  I also take lithium (prednizone taper too if the cycle starts harsh).

For abortive, I use energy drinks (with caffeine and taurine), O2, sometimes maxalt MLT, and Zyprexa as last resort.  

My wife has learn a way to message me then actually helps a little on milder hits.  I also use frozen peas or a hot shower just to get some comfort when abortives arent working.  Of course, it isnt comfort just something to try and take my mind off the pain.

As for attitude... try and enjoy the time between hits.  Don't let this beast control you even when he isnt in your head.  Try and do as much as you can while keeping yourself armed.

Just my thoughts.