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Topic: Long time suffer, first time poster... (Read 361 times) |
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Lone_Wolf_FLA
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Long time suffer, first time poster...
« on: Sep 8th, 2003, 9:49pm » |
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I had NO idea…!
I’ve read many posts here for a few days, many are like reading pages from my own life. Since I've read many of your stories, here is a small bit of my own story:
I spent my youth and young adulthood virtually headache (of any kind) free. There is no medical history of any headache conditions in my family that I’m aware of. Then “it” happened shortly before my twenty-first birthday. I was awakened in the middle of the night by a “mildly annoying” headache on the right side of my head. It went away pretty quick, and really didn’t hurt that bad, I rationalized it as “one of those things” and went back to sleep. Two days later I had another one, same as the first, sound asleep, awakened by this “slightly more annoying” headache. Again, “odd, but one of those things”. This went on for about a week and a half, every other, or two nights apart, sound asleep, then wake up with the headache. The difference was each time the headache was a little more intense, and lasted a bit longer. Then they started every night, and got worse each time, and at the end of two weeks I had decided:
A- This is NOT “one of those things”, and;
B- It was time to seek medical help… Eight years later I would be about to decide;
C- Medical “help” is a pretty d@mn subjective term, and for a large part a waste of my time. During those eight years “in the wilderness”, through countless tests, scans, pokes, prods, inexplicable long periods of pain free periods, and diagnosis of supposed ear infections, blood pressure irregularities, sinus infections, etc ad nauseam, and hypochondria, yes, I had doctors tell me I must be “imagining” these headaches. (I could have told him they were “all in my head” it was the getting them out that seemed to be the problem!) I have now had the “blessing” of this experience for twenty-five, going on twenty-six years. The headaches have “evolved” in that time from those first “mildly annoying” pains that awakened me, to now in “full blown peak mode” a semi-convulsive, blinding, “you’re POSITIVE you’re gonna die” plunge into…well, you know…most of you’ve been there.
Fortunately for me, I found some good knowledgeable Doctors, (finally!), and have managed to gain more, or (sometimes), less “control” over my “blessing”. Well, at least I am able to manage it to the extent I now feel I have more control of it, when it does take control of me. The pain free periods in the last few years have been more frequent than the pain cycles. Though currently, after over a three-year absence I have began a cycle again. How long this time? How bad this time? Who knows? I recently started a treatment therapy with Zonegran, along with my trusty Cafergot. (Oddly Imitrex and I never got along well). My Neurologist says he’s having exceptional results with Zonegran, as he says “near perfect” success rate, we’ll see. (He also calls me the "poster boy" of CH, so I have certain trust issue with him  .)
At least now I know I’m not alone…there is a certain solace in that. There is also a sadness, as I wouldn’t wish this “blessing” on another living soul…
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UnsolvedEquation
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Re: Long time suffer, first time poster...
« Reply #1 on: Sep 8th, 2003, 9:57pm » |
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Welcome to the board Lone_Wolf. Like I've heard some of the others say..."Grab an oar" and stay awhile. We know exactly what you're going through.
~UnsolvedEquation~
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JDH
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Re: Long time suffer, first time poster...
« Reply #2 on: Sep 8th, 2003, 10:59pm » |
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Welcome Lone Wolf,
You'll find a lot of good CH info here and a lot of people who know what you're going through and can help you.
Have you ever tried oxygen as an abortive? It has been a life saver for a lot of us. It's fairly cheap compared to most meds and there's no side effects.
Some members here put together a great info page for o2, check it out.
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
pfdan's to you,
Jim
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| « Last Edit: Sep 8th, 2003, 11:01pm by JDH » |
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judyw
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Re: Long time suffer, first time poster...
« Reply #3 on: Sep 8th, 2003, 11:17pm » |
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Welcome Lone Wolf...can see you are already getting the info here, we can always use another oar pusher here...just wanted to mention that there is a FL meeting coming up next month in SW FL...welcome to check out the info...Please keep us posted on how the Z is working....PPP
judy w
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Mastifflvr28
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Re: Long time suffer, first time poster...
« Reply #4 on: Sep 8th, 2003, 11:47pm » |
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Dammit Jim, ya beat me 
I was gonna put the oxygen link up!
Welcome to the board and your new family Loan Wolf.
Keep on reading, yer doin good so far.
Check out the OUCH site and JOIN
Take care,
Mast
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Mastifflvr28 (aka Michelle A.)
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OXYGEN!!!
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
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Donna
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Re: Long time suffer, first time poster...
« Reply #5 on: Sep 8th, 2003, 11:51pm » |
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Welcome aboard, Lone Wolf.
Where are you in Fla? I'm south of Sarasota. We have a get together planned for Oct. 11th. Send me an IM if you indeed are from Fla. and I'll tell you all about it.
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Georgia
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Re: Long time suffer, first time poster...
« Reply #6 on: Sep 9th, 2003, 1:58am » |
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Lonewolf....
Read...ask...vent...share...support.
Solace and sadness....strength and sympathy.
Welcome home, brother.
Peace and love,
Georgia
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stevegeebe
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Re: Long time suffer, first time poster...
« Reply #7 on: Sep 9th, 2003, 3:41am » |
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You ain't Lone anymore.
Welcome Mr. Wolf.
Steve G
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Cooked Brain
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Re: Long time suffer, first time poster...
« Reply #8 on: Sep 9th, 2003, 3:56am » |
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welcome to the board wolf!
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badfly
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Re: Long time suffer, first time poster...
« Reply #9 on: Sep 9th, 2003, 4:12am » |
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Welcome, you're not alone anymore!
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suzy617
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Re: Long time suffer, first time poster...
« Reply #10 on: Sep 9th, 2003, 4:57am » |
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Welcome to our world Wolf. You will never be alone again.
Now get to the back of the boat and start rowing.
Suzy
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Lone_Wolf_FLA
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Re: Long time suffer, first time poster...
« Reply #11 on: Sep 9th, 2003, 5:31am » |
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“JDH” thanks for the O-two info! Don’t feel too bad “Mastifflvr28”, I had skimmed it earlier, but I wasn’t aware of it as a treatment till I stumbled across the board Saturday, I may give it a try. As for O.U.C.H., I joined before I ever posted.
Donna, and judyw, yes I truly am from/in Florida, I live in Lakeland Fla. I am very interested in this get together, if I can make it I will be there! In the 26 years I’ve had this little “blessing” I’ve never met another REAL ClusterHead. I knew there were others out there, just never met one. I have chanced upon two or three “supposed” ClusterHead’s in years past. But in every case they very quickly proved probably not to have a cluster headache problem, but more likely another headache condition and an evident drug problem that had resulted from a too freely prescribing Doc. Speaking of scripts, I promise judyw, I'll keep you posted on the Zonegran, too early to say right now. Though I did sleep through the night last night. (first time in the last two months).
Georgia, Cooked Brain, suzy617, and badfly, thanks for the welcome! I promise I’ll lean no harder on anyone than I myself am leaned on.
Last but in no way least, stevegeebe I truly appreciate the sentiment of those words but I’ll always be “Lone Wolf”. It’s a long story, I’ll have to share sometime when we’re pain free, and living well. I might be “lone”, but I haven’t been “alone” in a long, long time. But please, skip the “Mr.”, call me Wolf, or Wolfie, most of the folks I know on other boards (none related to CH), have for years.
A lot of what I’ve read here is just heart wrenching, people without proper access to medications and treatments. Fighting a GP’s to get to a Neurologist, who may, or may not have even an inkling of what a CH is. I have been very blessed to be related to an excellent M.D., who not only understands, but has cleared many “obstructions” in my treatment path(s). I cannot even imagine going through some of the things I’ve read.
Take care,
Wolf
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| « Last Edit: Sep 9th, 2003, 5:35am by Lone_Wolf_FLA » |
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OneEyeBlind
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Re: Long time suffer, first time poster...
« Reply #12 on: Sep 9th, 2003, 6:23am » |
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Welcome to the board Wolf. Great to see you might have the opportunity to meet some other clusterheads !!!!!!! Boy, you work fast !!!!!!!!
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godsjoy
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Re: Long time suffer, first time poster...
« Reply #13 on: Sep 9th, 2003, 7:51am » |
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Welcome Wolfe,
I stumbled onto this board 2 years ago and just recently came back with my current bout of CHs.....I don't post a lot but read read read.....There are probably many of us readers......Thankful for all the info and have a place to post when we want or NEED to.....
I went through a circus with my new GP....You know the drill....Insurance changes....so you have to find a new Dr....Pure hell for us sufferers that have just learned to trust one Dr.....only to be thrown into the Yellow Pages to find a careing, "knowledgeble", and available Dr to help with the never ending search for relief of this disease.....Just when you think you have a handle on it.....something stops working....IT Morphs into something a bit different than before.....and here you are again....grasping for help....
OK....anyway....Love you all here...and thanks for being here,
Blessings,
Karen
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jminmilwaukee
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Re: Long time suffer, first time poster...
« Reply #14 on: Sep 9th, 2003, 8:04am » |
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26 years is an awfull long time to be alone on an island. Welcome lone wolf, you can put your soccer ball "wilson" down now and join the somewhat insane world of CH.com.
Jmin
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miCHel
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Re: Long time suffer, first time poster...
« Reply #15 on: Sep 9th, 2003, 10:45am » |
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Welcome Wolf!
Too bad you have to be here but you are definitely at the right place. I have never heard of Zonegran. What is it exactly? Is it known under an other name?
Take it easy out there in that Florida sun (you lucky devil).
miCHel
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Linda T
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Re: Long time suffer, first time poster...
« Reply #16 on: Sep 9th, 2003, 11:24am » |
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Hi Wolf and welcome.
Can't do more than ditto what's already been said.
Good luck and stick around. Linda T
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What a long, strange trip it's been!
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cootie
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Re: Long time suffer, first time poster...
« Reply #17 on: Sep 9th, 2003, 12:51pm » |
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Hi Lone_Wolf_FLA.........I'm a lill behind here this week so sorry I missed ya ta say HEY......got lots of room in this big boat of ours.....if ya drop an oar leme know cuz I got spares......start rowin with the rest of us. And enjoy yer new home ! Pam that is a rower amungst rowers
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5-string
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Re: Long time suffer, first time poster...
« Reply #18 on: Sep 9th, 2003, 5:51pm » |
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Vellcum Lone Vulf.... valk this vaye.
howdy,
Mark
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Lone_Wolf_FLA
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Re: Long time suffer, first time poster...
« Reply #19 on: Sep 9th, 2003, 7:43pm » |
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OneEyeBlind, I'm not too sure about how fast I am! Eight years for a correct diagnosis, then another 18 to find this boat, won't qualify me for any "speed" awards! (LOL).
miCHel, Zonegran, as near as I understand it right now is sorta the "BASF" of anti-seizure meds. You know "BASF" they are that company that doesn't really make anything, they just make the things you buy better. Well as I currently understand it Zonegran doesn't really do much for seizures either on it's own. But, it makes other anti-siezure meds work wonders when combined with them. Recently, it has been used by some Neurologists, who have found that it also MAY break the CH cycle, and it might work in a high percentage from what I'm told. The correct dosage is a bit tricky to get to, I'm up to 200mg nightly, and may have changes based on my reaction, or lack of. Doc says he's had some folks at 900mg before they stopped. The stuff without insurance is pricey, with my script card; $15 for 60, without; nearly $75 for 60! I don't think it has found it's way to "mainstream" CH therapy, but I'm not sure there is a mainstream yet either when it comes to CH. Though I do know there are Neurologists using Zonegran for CH. One of the Doc's featured in links from this site has it listed in his treatment meds/options. There are some generic names that the RX list for this site can get you to if you pop in the drug name and search.
jminmilwaukee, 26 years is so long your soccer ball will leave you...
godsjoy, sorry to hear you are 'dancing' with the Doc's. I know the "treatment tango" all too well. Thankfully, that's one dance I don't have to do anymore. I wish you the best.
Linda T, a speech is not in order, a simple warm welcome works real well for me, I'd say you did that quite well.
cootie, you just missed late yesterday eve. I was just up with the rest of these 'nightowls' I suspect for the same reason, didn't wanna drop my head on that pillow and invite the beast in. As far as late goes, I'm the one who's been MIA for oh, 'bout 18 to 26 years!
5-string, Vich vay? Vish Vay?
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TxBasslady
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Re: Long time suffer, first time poster...
« Reply #20 on: Sep 9th, 2003, 9:01pm » |
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Hi Wolfie
I am a newbie here too, been here for only 3 or 4 days. Like you, I read everything on this site, before I became a member.
The folks in here are unlike any I have ever met. Their welcomes are very sincere, and they are here for any and everyone, any time of the day or night. Go and read the threads, and you will see.
I truly believe that the arms that welcome us are "the arms of angels."
I hope you find peace and comfort here. I know that I have.
Wishing you many pfdan.............and welcome to this great home away from home.
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How lucky I am... to have known someone who was so hard to say goodbye too.
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Lone_Wolf_FLA
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Re: Long time suffer, first time poster...
« Reply #21 on: Sep 9th, 2003, 9:11pm » |
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Well, I would have to agree with you TxBasslady, these are some fine and special people!
And from one newbie to another good to meet you as well!!
I wish for pain free days for all!
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