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Cluster Headache Help and Support >> Getting to Know Ya >> Greetings! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1314097945 Message started by CSTrimble on Aug 23rd, 2011 at 7:12am |
Title: Greetings! Post by CSTrimble on Aug 23rd, 2011 at 7:12am
Hello my name is Chuck, and I'm a "chronic atypical" Clusterhead.
I have suffered with "headaches" since April of '91. I had just received a disability discharge from the Army in March of '91 for my knee and my back courtesy of Desert Storm Part I. I seemed to have 3-4 headaches every time I went to sleep, every other week until the end of August '91. I had my first reconstructive knee surgery in early December '91 and The Beast(s) returned while I was on the post-op narcotic "pain relievers" that I was taking. It eventually got so bad that I stopped taking my pain meds because of the impact on my nugget. For years I struggled with The Beast and several times was actually told by VA Docs that it very well could have been a symptom of Persian Gulf Syndrome. I would go through remission periods of months then I would get attacked with an equal number of months of unending agony. The lack of sleep and several other factors pushed me to some very dark places and I was eventually diagnosed with PTSD and some anger issues (which I now agree that I did have) and bipolar disorder (which I still think was an entire crock of shit). I took many antidepressants through that time to include Zoloft, Seroquel, Wellbutrin, and lithium. Through it all I continued to have the freakin' headaches... but not as frequently or as severe while on lithium. The lack of sleep, irritability, distancing myself when attacks would come on, etc., put some serious strain on my marriage and eventually the union completely fell apart. I fought with The Beast for many years and in '06/'07... silence. An extremely long remission period, the type we all dream of. Absolutely no twinges (shadows now, thanks you you all!), no headaches, no fear. Then in about mid February of '09, WHAM! My new wife gets to see a full-blown midday, ass-kickin', rip somebody's head off explosion. This one is like no other I've ever had before. I need help and I need it fast. I work as a supervisor at the local County Emergency Communications Center and I know what the local ambulance service charges for a "ride" and I'm not payin' for it. I have the wife drive me to a new "Doc-In-A-Box" where I know the Doc and respect his abilities. His PA takes me straight to a room and throws on the O2 and within 10 minutes, sweet bliss! His PA explains to me that what I have been experiencing for nearly 20 years now are cluster headaches. (Wait the VA had it wrong? Let me get my shocked look on... :o) The PA makes 2 phone calls and gets me in with this Neurologist who used to be an Attorney in Chicago, but left that to become a doctor. And he actually ran a clinic in Chicago that studied headaches and is very well versed in clusters. Dr. Kurt Hopfensperger - my hero! Immediately - home O2. Right off the bat, my insurance company tried to deny it (damned HMOs), but Doc is on the Board of Directors and got that straightened out in short order. When I recognize I'm in a cycle I take Indocin daily as prescribed until the cycle appears to be over. I was on Topamax for a while and had titrated up to 75mg 2x/daily while still having some pretty massive battles with The Beast. Eventually had to ask Doc to take me off of it because of the cognitive side effects and still having major attacks. Just couldn't have that at work. Replaced Topamax with Depakote ER. Currently at 1500mg 2x/daily. A lot of people (especially the EMTs, Medics, nurses and some of the Docs I talk/work with) freak out when they hear I take 3000mg a day, but so far it seems to have decreased the frequency, duration, and intensity of my headaches. But that could also be because I go to war... When I get hit with that familiar "twinge", I head straight to the bedroom. I open up my O2 regulator, fill the bag on my mask, and hit myself with the Imitrex auto-injector. While I'm doing this, my wife is getting a large cup of water and brings it to me so I can slug down a Maxalt and then get my mask on. She has learned to just let me go through the motions and if I need anything I'll ask. She feels totally helpless, but she knows at that point she's done all she can. I've tried very hard to hide from my stepdaughter when it get hit, but she witnessed the last one (which was very minor) and jumped right into action getting a cup of water and helping her mom while I was fighting the fight. I am now truly blessed to have such good help and understanding. I've been very lucky that I have not had a "visit" while behind the steering wheel or while at work yet, but I hope its something I can get myself out of in a hurry. I have a constant fear of my coworkers seeing me fighting The Beast. I just really don't want them to see it. Some definite downsides to the massive dose of Depakote; I gained about 40lbs in the first 5 months I was on it... I was warned to watch my portion control, and didn't heed the message. Seems that Depakote delays the signal between your stomach and your brain that signals that you are full. So by the time your brain says you need to stop eating, you have really pigged out. Working on that situation now - and at 42 with my physical disabilities I'd better get moving while I can. I also started to lose my hair. Could also be partly because of my age... But I'll blame it on the meds. Well, I think I've rattled on long enough about me for now. Nice to be here, and nice to be in a remission period again - but for how long... ~Chuck |
Title: Re: Greetings! Post by wimsey1 on Aug 23rd, 2011 at 7:34am
Good to have you on board, Chuck, and thank you for your service. Your post was quite good and informative but in what ways do you believe you are atypical? Sounds like a normal day at the office with the beast. Sucks. You are doing well having gotten O2. Many have us have found if we slam an energy drink (Monster, Red Bull, Rock Star) as a hit shows itself, the abort time reduces a lot and recurrences are less ikely. You've also been given second line preventatives. First up ought to be verapamil and lithium or even Olanzapine. The others can work but seem to be less successful. I also went the route you are going and found weight gain accompanied all but Topamax. I am now on 640mg/day of verapamil and while I remain chronic I have it under control with O2 and Monster, reserving imitrex for those times of intractability. Check out the imitrex tip on the left for stretching out your Rx. It works! God bless. lance
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Title: Re: Greetings! Post by Guiseppi on Aug 23rd, 2011 at 7:33pm
Nothing I can add to Bob and lances' posts, but welcome to the board!
Joe |
Title: Re: Greetings! Post by deltadarlin on Aug 25th, 2011 at 8:18am CSTrimble wrote on Aug 23rd, 2011 at 7:12am:
Please tell me that you aren't taking Maxalt and Imitrex and the same time! You are not supposed to mix triptans. |
Title: Re: Greetings! Post by Skyhawk5 on Aug 27th, 2011 at 12:58am
DANGER: mixing Triptans can be deadly!!!!
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Title: Re: Greetings! Post by CSTrimble on Aug 27th, 2011 at 6:10am
Actually, I realized I'm no longer taking Maxalt, but rather Treximet - which is still a triptan... and I am taking all these as prescribed.
Appears that The Beast is back as I had 2 40 minute bouts yesterday with about 15 mins in between... Wimsey, Doc calls me "atypical" as compared to his other patients as we have found no pattern to my headaches. |
Title: Re: Greetings! Post by Bob Johnson on Aug 27th, 2011 at 8:57am
Give us some reports on the Treximet. It's formulated and marketed for migraine, not recognized as a first line abortive for Cluster. So, you response to it will be of value.
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