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Cluster Headache Help and Support >> Getting to Know Ya >> Not exactly new to the site but I'm registered! http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1230612184 Message started by Uncontrollable on Dec 29th, 2008 at 11:43pm |
Title: Not exactly new to the site but I'm registered! Post by Uncontrollable on Dec 29th, 2008 at 11:43pm
Hey everyone!
Much like Grumpy before me, I was prodded by my significant other (you all know her as midgetnminx) to get on here and tell my story. Honestly, through the years, details have been forgotten, many drugs have been taken, friends lost, friends found, trusts broken, jobs lost...I guess you all probably know where I'm coming from. With all that in mind, I'll give it my best shot... I was born in 1970 to a rather rude awakening as a dry birth...considerably worse for my poor mother, I'm sure, but the technology at the time (or lack thereof) made it quite the ordeal for both of us. I was paralyzed on the left side of my face for quite sometime as the doctors kept reassuring my mom that it would "get better". It did but the process has given me an interesting, if not quirky crooked smile. From that point on to my late teenage years, I lived a normal, healthy life...all the standard bumps and bruises that teenage boys should get. I joined the US Navy in 1988 and went right from boot camp into specialty schools and eventually to the fleet. Around the fall of 1989 was when the first attack occurred. Right side of the head, 2am. I clawed my way to medical to try to get help...ANY help to get this thing out of my head. I swear I thought I had a damn tumor. So did they. Scan after scan, nothing. A good part of the fall of that year was spent going from one military clinic after another. Then...nothing. The whole thing was dismissed as a fluke and life went on until the next fall when the whole process repeated again. The only difference this time was the fact that I was underway, heading to what would eventually be the first Persian Gulf conflict. All they could do was dope me silly with morphine or knock me out with gas (not sure what it was) or tell me to "grit your teeth and get over it" until that season passed. After that winter and into the spring of '91, the twice a year cycle started. At this point, pretty much every medical professional that I had come across had diagnosed multiple different possibilities and were shooting me with everything they could get their hands on until they all finally threw their hands up, almost in unison, and told me I must be a hypochondriac since they couldn't fix it. Almost 5 years and two states later, I finally got the correct diagnosis. I was episodic. Twice a year for about 2 months a shot. 2-3 hits a day. Now, don't get me wrong, I am forever grateful to the Doctor that got it right. His bedside manner may have sucked incredibly but his diagnosis and most of his methods were spot on. Until that, I was coming up with the craziest of methods to quiet the beast. Ice packs in the fridge, coffee brewed before I went to bed and put in the fridge to be nice and cool when I slammed the whole pot (long before Red Bull)...one night, I slammed my head into the snow during a party. I was a real hit that year... :P Where things went off track with him was when the drug companies started gaining interest in me in particular. I'm pretty sure I was a voodoo doll and a pincushion for the better part of two years but it was all voluntary at first. I couldn't even possibly begin to tell you all of the things I was taking. The ER trips were all part of the madness as well. By the time I came around to my senses, I had been taking prednisone for over a year straight. I HAD to break loose from all of this. My next doctor was less of a drug advocate but did get me into Imitrex for a little while until the backlash was too unbearable. Lidocane was another one that worked for a short period of time but eventually quit altogether. I had tried all of the preventatives including lithium, prozac and all the blockers available at the time. My biggest problem was my tolerance levels were through the roof and anything I took seemed to stop working almost immediately. I had tried O2 but the dosage was never right and they always used a nose piece to administer. While seeing this doctor, I went from episodic to chronic and for almost 2 years was getting them everyday, several times a day. We would jump from one method to the next and rotate out until it stopped working then try something else. I was a mess. One day, it all stopped. I went on to pick up all the pieces of my life. Having one of the more unusual career choices for a CH, I got to record and tour as one of the founders of a moderately successful rock band as well as record and play with a TON of other folks as well. Lived a good part of my dream for a bit and settled into a decent IT career in-between it all... The first year went by and the thoughts and fears of the beast started to subside and into the second year, I had relaxed into "storytelling mode" by telling people of the horrors I used to endure. I had gone to several sites that talked about "alternative" therapy and more natural routes to take but never put much faith in it all until it came back almost exactly two years to the day. I knew that I couldn't possibly medicate myself anymore with all of the things I was taking in the past...the stuff almost killed me, for God's sake. The first season back was hell but I finally found the right use for O2 and BOY did that make a difference! I did try the kudzu with varied results but then that season was over. That next fall, I studied the CB site and decided it was at least worth a shot. I'll leave you at that part since I'm not here to preach about methods. I'm not free of the beast entirely but giant steps have been made in what works for me. I still get my breaks from time to time and it looks like everything went back to episodic but these days, I don't take anything for granted. I have had the wonderful advantage of having a small, but rabid group of supporters in my corner. My parents and Minxy rule the world as far as I'm concerned. Honestly, I don't know where I'd be without their support. I've been in this game for roughly 18 years or so with a little break in the middle. I'll try to check the boards as much as I can to see if I can offer any insight from my unusual experiences so far...you never know, something might shake loose from this tree that could help somebody else... ;) I'm really glad you guys are out there...thanks for reading this rambling diatribe! RJ (Un) |
Title: Re: Not exactly new to the site but I'm registered! Post by MidgetNMinx on Dec 29th, 2008 at 11:50pm
I don't rule the world baby, but if the job came available.... Loves!
Now where is my dang kleenex?? :'( Minxy |
Title: Re: Not exactly new to the site but I'm registered! Post by Marc on Dec 29th, 2008 at 11:55pm
Good to hear from you!
I can only say that being proactive in your treatment really is working isn't it? Glad you found the goodness of O2 when used properly. Marc |
Title: Re: Not exactly new to the site but I'm registered! Post by vietvet2tours on Dec 30th, 2008 at 12:44am
Really good post. Keep on huffin that oxygen.
Kinder gentler Potter |
Title: Re: Not exactly new to the site but I'm registered! Post by UnderTheRadar on Dec 30th, 2008 at 5:32pm
Welcome to the family! I'm glad you finally got diagnosed...I was the spouse of a navy man when this first happened to me, and had every test they could think of done, but no one said clusters- they just kept telling me it was migraines from stress. :D Oh well, at least it was free!
Now fess up- what bands were you with? -Paige |
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