I have Clusters which like many of you have gone misdiagnosed for years. My symptoms made no sense! My wife would feel bad for me What else could she do? Dr's just gave me tons of meds for tension headaches. Finally I found a Neurologist who used the Cluster word.  I am on Verapamil, O2 therapy and am staring at this bottle of new medicind Topiramate (Topamax) which I will start tonight. The possible side affects scare me, but it not working scares me more!  I was reading the home page where it says, "Want to know what it's like to live with cluster headaches? Read below..." and I started to ball my eyes out!
I found others who know what I am going through! After all this time.
THANK YOU!!
John in Texas

Hey John,

Glad you've finally gotten the right diagnosis and are receiving treatment.

Have you seen the oxygen info link on the left of this page yet? If not, that'll be a very worthwhile read now that you have O2.

This is a great place to compare notes on treatments, with some knowledgeable CH vets standing by with advice. so fire away with any questions.  8-)

Welcome aboard, John.  Good luck with the Topamax. It does wonders for a lot of people and it is worth trying. I tried it recently and had the "morbid thoughts" side effect & had to stop taking it, but I think it knocked me out of high cycle so it was definitely worth trying it.

Charlotte

Sorry you had the need to join our little club John but Welcome Home!!! 

Since you're in Texas, I also wanted to invite you to a clusterhead Meet n Greet here in the Dallas area next weekend.  You'll find the details in the Meetings and Gatherings section of the board or you can contact me via email at lonnyreddkaraoke@att.net for further info.

Wishin you PFDAN's

Dallas Denny

Hi John,

Not a great club having to be a member of, but welcome anyway.

Your doc seems to have gotten you off to the right start with O2, Verapamil and Topamax. O2 is the abortive of choice for many of us. I suggest that you complement your tool box with some portable abortives that include energy drinks (taurine and caffeine mix) and triptane injections and you should be all set to take on the beast.

Before you start Topamax you should not be too worried about the side effects. We all respond differently to it and dependent on the dosage (I have been taking 150mg a day) you may find (like I did) that the side effects are very manageable. Your doc will have told you that its very important that you taper up the dosage gradually in 25mg intervals every 5-7 days.

My only side effects are pins and needles in my limbs and the occasional blurred vision at night in darkness, which is why I personally recommend to take your pm dosage just before going to sleep. I have also felt that when I have a cold or flu that Topamax makes me feel a little dopey (some of us feel dopey throughout).

Since CH has a tendency to morph Verapamil and Topamax and their combination, at least for me, only work on and off and never have been the silver bullet for me being chronic. I know however that for many episodic sufferers this cocktail has been the charm.

I wish you many PF days.

Welcome to the board, congrats on finding a knowledgeable doc, certainly worth their weight in gold.

Take a minute as Bejeeber suggested and read the oxygen info link on the left. We've come a long way recently in improving HOW we use 02. As a result, people who said oxygen didn't work before, are raving about how well it works now!

Joe

Thank you for your support! Wow.

John,

Your post made me stop and think for a moment. I'm not a very prolific poster here, but you reminded me of just how grateful I am for the people on this site.

I stumbled in here lost, dazed and confused in 1999. The things that I have learned have truly given me back my life. I went from being in constant total fear of the next hit to being able to manage my Cluster Headaches with confidence.

Because of their compassion and support, there are people on this site that I see as lifetime friends. I may not see them face-to-face often, but I know that they "have my back" when I need them. I realize that's a strong statement and I mean it.

Welcome aboard. Hope we can meet you next weekend.

Marc Kurth
Bastrop, TX

Marc wrote on Mar 15^th, 2010 at 8:08pm:

John, Your post made me stop and think for a moment. I'm not a very prolific poster here, but you reminded me of just how grateful I am for the people on this site. I stumbled in here lost, dazed and confused in 1999. The things that I have learned have truly given me back my life. I went from being in constant total fear of the next hit to being able to manage my Cluster Headaches with confidence. Because of their compassion and support, there are people on this site that I see as lifetime friends. I may not see them face-to-face often, but I know that they "have my back" when I need them. I realize that's a strong statement and I mean it. Welcome aboard. Hope we can meet you next weekend. Marc Kurth Bastrop, TX

Marc...that there...well...it choked me up. EXACTLY my experience...and not just ch either. I'm not sure how to explain loving people I have never met...but I DO!

John..you're in the right place...absolutely...without question. Listen up...it WILL change your life.......

Best,

Jon

Jon,

I hear you loud and clear.

You fight battles every day that are far greater than mine and I respect the way that you continue to move forward!

Best,
Marc

Marc wrote on Mar 15^th, 2010 at 8:08pm:

I went from being in constant total fear of the next hit to being able to manage my Cluster Headaches with confidence.

Marc, you nailed that statement.

That is the biggest thing this site and support group has done for me.  That is, going on the offensive when the beast arises and with confidence.  He doesn't get the best of me anymore.

I can only thank all of you for that :)

I think this post speaks for me quite nicely as well.

I used to absolutely *dread* my next cycle of cluster headaches. When they were unmanaged, they drove me literally to the brink of my sanity every cycle. Not so much so now that I know they can be controlled.

Hi John and welcome to our family.  Yes...we are a family here and you are now a part of it.  We take care of our own and we fight for each other and vent to each other, help each other out when times are bad and make each other laugh when it is appropriate (which is all the time)

Pull up a chair, write down your thoughts, lets get to know each other,  and how we can help you.

My name is Linda.  I've been here on DJ's wonderful site since 1998.  Chronic CH since 1987 and helping others here however I can.. is what I and others are here for.  DJ started this site because there was so little known about this condition and certainly no support group to help folks.  His dream has now snow-balled into the best information anywhere, the best support group assembled, a non-profit group called O.U.C.H. and many world-wide OUCH affliiates.  We have private get-togethers all over the U.S. during the year and every July we have an O.U.C.H convention with the best Neurologists and Dr.s in the field to give us the latest advances.  In July our convention will be in Atlanta, Ga.

This is probably one of my longer posts, but I wanted to welcome you and let you know you are among friends and all of us are willing to help in any way we can.
    (Note to self:  stop talking so much)   ;D

Linda