Hi everyone!  Pain and suffering is always a little easier when others know what your feeling.  I'm 37 years old, and I'm a ch sufferer.  I think I experienced my first cluster headache probably around 10 years old...and I didn't realize the depth of my headache until around 25 years of age.  Thank god for me, my ch occur around every 1-2 years, and it's always around the change of season, especially during the autumn change of season (such as now  ).  I hope to read about everyone's painful experiences and I hope to find preventive resources on this forum.  I think we all know the excruciating pain we all endure...mine usually lasts around 1-2 hrs, and the key is to catch it early during the on set of the ch...I find that alchohol definitely induces the on set of the ch.  I look forward to reading everyone's experience and perhaps meeting some of you in the near future...great to be a part of this forum.  I live in NJ....

Bill   

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Welcome to the board Bill. Are you working with a headache specialist neuro yet? We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis. I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Go to the meds section of this board and read the post "123 pain free days and i think I know why." It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

Clusterbusters.com

Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

I think part of the reason I never really sought help earlier was due to fear...when I was a kid, I always thought I had somekind of malignant brain tumor.  Because the CH are not frequent (knock on wood - usually anyweher from every 8 months to 2 years), I never really sought the right medical care.  It wasn't until around the age of 25 that enough was enough...since then, I've been switching between Imitrex (ineffective for me) and Zomig (seems to work the best).  I've been doing a lot of reading, and most shockingly, I've read that "fungus" have been linked to breaking not only the current headache, but knocking out the "cluster."  Anyhow, looking to learn as much as much as I can from fellow sufferers.


wimsey1 wrote on Sep 13^th, 2011 at 8:13am:

Zomig is a nasal spray so my guess is the imitrex you used was a spray as well. Or a tab form. We have found the injectables are faster and more efficient, and that 2mg is enough. This can be achieved using the imitrex tip and it stretches out your Rx.

Still, you really should get to a headache specialist. So many other diseases besides brain tumor can imitate CHs. Fear aside (we're all afraid when it comes to the pain we expeience) a proper diagnosis can put you on the right treatment path. Blessings. lance