Hi,

My name is Dan. I am new to posting on this site but I have been diagnosed and suffered from cluster headaches for the past seven years ( I am 27 years old). My father had cluster headaches but, ironically, he has been in remission for the last seven years (since the beast started visiting me). I must confess, it has taken me this long to post here, not because I was unaware that this site exists.  I have been afraid for so long to face the emotional component of cluster headaches. I have been afraid of throwing a " pity party" for myself, but now I understand that I need emotional support.
As I get older, I realize that I may have these headaches for the rest of my life. I manage them well.

A combination of verapamil, imitrex stat (as needed), seroquel, occipital nerve blocks, botox, and major lifestyle changes has kept the beast somewhat manageable for me. At this point, the emotional impact of ch is nearly as bad as the pain. The beast has had a serious impact on the quality of my life. Even though this is a terrible thing to endure, I am  inspired by the humor, warmth, and mental toughness exhibited by the people who post on here. I look forward to getting to know you all better; to learn, and provide support.

Dan

Hey Dan K.,

Good to have you on here!

Also good to see that you've figured our how to manage the beast well.

I bet when you're your dad's age you'll be in a long 7 year and counting remission too (it may seem like that is WAY off into the future, but I'm afraid time can have a way of flying by, in this case, maybe not such a bad thing.

So are you an episodic or chronic CH'er?

Welcome to the board, and yeah, misery does love a little company don't it? ;) I didn't see oxygen mentioned in your post. Has all but eliminated the trex useage for me. Read the link on the left and give it a shot!

Glad you decided to poke your head in here!

Joe

Any chronic condition carries an emotional price which too many docs/patients fail to face. Glad to read that you are so aware.

This material is not "smooth" but I hope it conveys a highly effective approach to help you gain long term peace with your "buddy".

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Pain vs. Suffering--research support
(Posted, 1/7/07) 

SSRIs used to treat depression have gained a good track record but docs have been long aware of relapses when the med is stopped. Research has lead to a recommendation that the med be continued for up to 18-months after the depression has lifted because this reduces the rate of relapse. Parallel research revealed that this longer use of the meds allows our brain to "rewire" itself leading to better long term outcomes.

The article (available on the OUCH site) "Pain vs. Suffering" is based on cognitive therapy. These forms of counseling/psychotherapy have been strongly supported by good research. Now some evidence is appearing that these therapies act like the SSRIs to stimulate our brains to "rewire", affording protection against strong anxiety conditions. Bottom line: looks like it may be possible to alter brain functioning to build in a permanent reduction of the anxiety which besets many folks with CH. While the gods may not have made a final pronouncement yet, experience with cognitive therapy, so far, really supports its use to treat anxiety & depression. While using "pain vs. suffering" takes time, commitment, and practice, it beats endless use of benzos, etc.

"“My brain is generating another obsessive thought. Don’t I know it is just some garbage thrown up by a faulty circuit?” After 10 weeks of mindfulness- based therapy, 12 out of 18 patients improved significantly. Before-and-after brain scans showed that activity in the orbital frontal cortex, the core of the OCD circuit, had fallen dramatically and in exactly the way that drugs effective against OCD affect the brain. Schwartz called it “self-directed neuroplasticity’ concluding that “the mind can change the brain?’ (TIME, 1/29/07. Major article on the human brain.) (OCD is classified as an anxiety disorder.)

Welcome to clusterville Dan. :)

Welcome Dan!

Welcome my friend! 

This is the place to live, learn and unleash.  Oh, and some great laughs as well :)

Ask us anything, share with us anything and absorb as much as possible.

Cheers,
Chad

Thanks to everyone for the warm welcome. Guiseppi - I forgot to mention oxygen. I use it and it helps tremendously. I wish I could have an 02 tank with me wherever I go. I think I read something about cognitive Behavioral therapy (CBT) on here (not sure who posted it). I am a believer in CBT to help manage CH. It is not easy though. I have also had Occipital Nerve Blocks which tend to keep me pain free for at least 1 week. I have had botox in the past and I believe that it has reduced the frequency and intensity of CH. Botox has certainly helped minimize "twinge" pain.

I have a question for you guys actually. Perhaps I should be posting in a different board on this, but here goes... I plan on traveling from NY to SE Asia next month. I have never traveled this for and I plan on being there for 3 weeks. Does anyone have good advice for travelling with CH? I plan on getting an Occipital Nerve block a day or two before I leave to help prevent the pain during the first few days (airplane cabin pressure changes, new time zone/jet lag, climate change, stress from traveling... all potential CH triggers.) Does anyone have experience traveling with the beast? Please let me know if you have any advice.

Thanks again,

Dan

I've traveled with imitrex, TSA has no problem with the stat pen syringes. Traveling is a crap shoot for me while on cycle. I've never had an in plane hit but others on the board have posted about it!!

Joe

i actually took a flight this christmas while in cycle and 1 hr into the flight i got hit i did a imitrex nasal did the trick! could be tricky flying while in cycle just be prepared! good luck!!

I'm thinking that for your trip, 1/3 to 1/2 dose imitrex injections a la the imitrex tip on the left side bar here could be good for being able to abort plenty of attacks while being in less danger of side effects or just plain running out. I've had to excuse myself while on a plane before to go do the injection thing in the lavatory.

Then I suppose you'd want some inhaler too, for those times like riding in a bus/subway where the injection isn't practical.

I wonder if imitrex equivalent is relatively cheap in SE Asia, and if you even need a prescription for it there? (no prescription required for it last time I was in Mexico)

Hi Dan.  Welcome.

It's about a 12 hour time difference to other side of the world, keep your preventive meds on schedule, or depending on how you take them, some adjustment in timing is good to be aware of -- night is day, day is night.  I'd make sure to carry your abortives and also see if the doc has any samples of the nasal spray trex for additional odd coverage. 

Relate to your doc about your trip for his consideration of any three week extra coverage he could help brace you with, for the possibilities of any increased activity while in a far away place.

Hi Dan,

It's about time you came in and said hi.  ;)

Travel, like everything else related to CH, is an individual thing.  Whenever I fly I get hit within a half hour of landing.  I know this and plan accordingly.

If you haven't been hit traveling before, just make sure you have your abortive handy.  If you know you're going to get hit you can do what I do.

My Dr perscribes Frovatriptan for travel.  It's not a typical triptan for CH use.  It has a 3 hour onset of action but can give you up to 24 hours of CH free time.  I take it 4 hours before my flight is scheduled to land.

If you're going to be there three weeks call your insurance company and work with them to arrange to have an Oxygen delivery at your destination.  Then you just bring your mask, regulator and some tubing with you.

Good luck and welcome home.

-Dennis-