Hello all,

I have been suffering from this beast since 2004 and was recently officially diagnosed with CH.  I was diagnosed many times as suffering from migraines, mainly because my father suffered from them, so naturally they thought it was genetic.  I had taken all kinds of painkillers that did absolutely nothing so I deifnitely knew something was really wrong.  Coincidentally my doctor (who i've had since birth) recently did research on a series of chronic headaches known as "cluster headaches" and officially diagnosed me with it. Naturally I googled it and looked at all the sites and started to get scared for my life. Do these thigns really make people suicidal?  The headaches are definitely excrutiating, but I never thought they were so bad I'd want to take my own life.

Anyway, like I said, these started in 2004.. I still remember the first time they happened... I was at work and it just came out of nowhere. They happened every day for about a month at the same time everyday.... 11AM.  They always started the same way....behind my left ear...and then gradually spread across the whole left side of my face.  I went to the dcotor and he asked me about my diet.  I admitted that I ate McDonalds damn near every morning for breakfast and he concluded they possibly came from all the grease inthe food.  I stopped eating it.  The headaches stopped. YEY.

However, a few months later, they started back up.  And its happened very sporadically since.  Until until about 2 weeks ago, I hadn't had an attack since about summer 2008.  But this time, they are more severe than ever.  Unlike the majority of the people on here, mine always occurs in the late morning/early afternoon....yes..when I'm at work.  Before I've been able to just sit at my desk and bear the pain by just closing my eyes and wincing until they went away...but now they are just so much worse.  I now find myself in odd positions in order to ease the pain.  I now have to go to a dark network closet and sit in there in the blackness for about 30 mins for it to let up.  Luckily since I work in IT, my co-workers think I'm out in the building being productive, so I don't get any flack for not being at my desk.  When it does finally go away, I am so exhausted and my mood has changed drastically.

I am so glad to have found website because I wasnt sure what could be done about this, especially when my doc told me that so few people have this problem so there hasn't been much research done on what can be done about it.  I look forward to making friends and being as encourgaging as I can to people because NOBODY deserves this.  I definitely feel for the people who have families that are affected by this. (I'm single)

Hello and I'm glad you found us!
I'm not glad you had to but, if you have to suffer with this, there is no better place to be!

When I first started getting hit my attacks were at 11am and 5pm every day. Yes it WAS that precise.

What meds has your doctor prescribed you so far? There is a TON of stuff I can tell you including just how much research is currently being done! I don't want to over load you all in my first post though so lets start with basics and work up

Welcome - you're home now! :)

Helen

Hi !     [smiley=wave.gif]

There is so much to learn here and more support than you can imagine.  As Helen said,   You're home.  Welcome!

Jeannie

Welcome home!!  Sorry you had the need to find this place but since you did you have arrived at a place so full of help, hope, and empathy that it will blow your mind!!  The O2 info that I got here has been a lifesaver for me as it is with many on the board.

Just ask questions and read...read...read!!!

Wishing you some PFDAN's

Dallas Denny

Yep.   Welcome home.

   First thing I would do  if I were you, Is get your doctor to give you a script for Oxygen.
   It is the best, and will for most folks kill that pain within minutes...go there first, you won't be sorry.
   Then read read read...lots of help here and great people who know just what your going through.
            Keep us posted.       lorac

welcome,

     Where have you been. We have been waiting for you since 2004.

                       Coach Bill

Yeah...WOW is right...this place and these people will blow you away with the collective thousands of years of experience, compassion, love, support, and the help you need to help yourself...ch.com literally changed my life

Welcome aboard!

Best,

Jon

I guess my doctor hasn't learned about the O2 yet (I'm not sure).  I wasn't prescribed anything (yet) because I am currently on Effexor since I suffer from anxiety as well.  After reading through this site I'm now a little worried since I'm supposed to be taking a plane to the caribbean on thursday.  I guess before I'd never flown during a cluster period so I was never affected.....but we'll see.  :-?

Ive already read through alot on this page and I almost cried from reading the stories from people who have to get up in the middle of the night and run down downstairs and close themselvesoff from the rest of their house/families until the pain went away.  At the same time, I;m happy that I've found people that wont think I'm crazy when I;m sitting in one spot wincing in pain and squinching my left eye while squeezing my temple.

Grab a couple of red bull type drinks at the airport (once you go through security) so you can have them on the plane. Chug them at the first twinge and they'll help abort. Caffeine is a good vaso constrictor and the addition of taurine in those energy drinks increases the impact of the caffeine. Strong coffee can help too so get those cabin crew ready for you! (I'm showing my age - I typed air hostesses first argh!)

Ask your doctor if you can have some triptans, explain you are flying and ask for some imitrex injections. not the pills or nasal sprays. If he wants you to try nasal sprays first ask for Zomig NOT Imitrex.

Now - I'm giving you the above information not knowing if there are any contra indications for you. I'm not a doctor and even more importantly, I don't have a clue about your medical history. I can only suggest things that work well for CH so that you discuss them further with your doctor. These meds are scary stuff - be careful

Another thing you might want to consider is a prednisone taper. These are VERY effective at blocking hits although very much a short term option as pred is a horrible thing. It's a really good option for a holiday though so well worth considering especially if you start a preventative such as verapamil at the same time - the pred will cover you while the other starts to kick in.

Verapamil (or verap as we tend to call it) is a Blood Pressure med that is very effective at blocking hits. It takes a couple of weeks to kick in hence the pred taper which works instantly but can't be used for more than a couple of weeks. You should have an ECG before starting Verap, ten days later and then at/just after every increase. You may have to go to quite a high dose to get effect, the mean here tends to be between 480 to 720 mg with some getting effect at a lower dose and some needing a much higher one. It's very personal and it's not an option for everyone. It' doesn't work for me as my blood pressure is in my boots so I start passing out! (Although I shut up briefly when I do it's generally considered NOT a good thing!)

I'm trying to give advice very quickly bearing your trip in mind, lets try and get you sorted so you can have a fantastic trip!

Helen

Every day I read and post and I start to recognize the   same names. Sharing and relating.  Welcome to your new home. The support here is second to none. I tear up every day from this site. I hope your trip is amazing. I would only use imitrex as a last resort. It is effective, but for most it has consequences. I hope your cycle is short and you have a great trip.

Jrcox

I just got back last night and oddly enough I only had slight attacks on my first flight goign to the airport to connect to flight #2, and then when I was coming home on my connecting flight.  It was actually soemthign awful coming home, particularly when the plane was landing.  I too LeLimey's advice and got some red bull (didn't have time to go to the doc) and they worked pretty good.

The trip itself was great! No headaches at all!  ;)

Wow...so glad to hear that your vacation went well.  I have had my clusters strike twice while coming home from vacation by plane.  I remember how awful that was!
I just wanted to mention that you should be very, and I repeat very careful about the medications that you take while on Effexor.  There are a lot of negative drug intereactions, and I think that verapamil is one of them.  I am also on Effexor and have chosen not to take any meds for the clusters, because of the side effects.  I find that oxygen and caffeine work the best for me.   Also watch out for certain decongestants containing pseudophedrine while taking Effexor ( I learned the hard way)

Ask about oxygen, it is the best way to go for dealing with the clusters.  And make sure that you have lots of information about the interaction with Effexor before you try a preventative.  Good luck...
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