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Title: Hi there, I'm new Post by Edski_1 on Jan 16th, 2004, 11:10am I'll try to be brief...seldom can I be. ;) 38 year old male, had an ~year long bout about 13-14 years ago...mostly had remission until about 3 months ago. Was grossly mis-diagnosed so long ago... Been on topamax for a week or so, much better, but just lost my job as a computer programmer. Downsizing :( Sux, life will go on, worse things have happened. I might even have a lead already... Anyway, this is a great site, seen the ouch site, and not only am I comforted in that odd way that other suffer this affliction, I have come to realize that 1) I probably don't suffer nearly as bad as a lot of others, and 2) more needs to be done...I think a lot of other people are suffering and don't even understand it. |
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Title: Re: Hi there, I'm new Post by jonny on Jan 16th, 2004, 11:12am Welcome aboard Dude....start reading ;;D ......................jonny |
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Title: Re: Hi there, I'm new Post by BobG on Jan 16th, 2004, 11:14am Wecome to the board Ed. It's a good place to be and lots to learn here. |
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Title: Re: Hi there, I'm new Post by cathy on Jan 16th, 2004, 11:21am Edski..... WELCOME .... Cathy :) |
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Title: Re: Hi there, I'm new Post by ZAIRA on Jan 16th, 2004, 11:23am Welcome.... Now you are no more alone!!! Best wishes.... ;;D !! Zaira |
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Title: Re: Hi there, I'm new Post by aprilbee on Jan 16th, 2004, 11:25am Welcome to our/your family!! |
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Title: Re: Hi there, I'm new Post by CJohnson on Jan 16th, 2004, 11:26am What methods do you use to abort a headache that is in progress? Do you have imitrex or oxygen? PFDANs -Curtis |
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Title: Re: Hi there, I'm new Post by AlienSpaceBabe on Jan 16th, 2004, 11:26am Welcome Edski.... congrats on your long time pain free... sorry the beast is back for you..... stick around - you'll love this group of people! |
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Title: Re: Hi there, I'm new Post by taraann on Jan 16th, 2004, 11:37am Welocome to the boat! Stick around read read read and the support and info at this site is just incredible (quite addictive too ;;D ) |
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Title: Re: Hi there, I'm new Post by Edski_1 on Jan 16th, 2004, 12:20pm Back in the 1989-1991 episode, I was initially diagnosed with clusters, but then the diagnoses was revised to just migraines...then to generic "sinus headaches"...initailly I ws given cafergot, and something else (forget), and had mixed, if no real results... So long ago, and I also went througha divorce about the same time, so a lot of people just chalked the HA's to "stress". This time the primary care physician gave me zomig tabs and cafergot...I ended up using the zomig for the intense headaches as an abortive, and tried to use the cafergot as a semi-preventive, but generally as an abortive treatment. As I said, maybe it's not as bad as others, or they were going away before the cafergot was working...Zomig had several episodes of startling good results. I saw the neurologist a week and a half ago (second trip to the PCP they referred me), and he said "cafergot and zomg!! wtf!!!!"....put me on the topamax...50 mg a day, supposed to go up to 100 mg a day Monday. Been having one headache a day now, much less severe and generally less duration than before, and more or less predictable (about 12-15 hours after I take the dose). I only took 25 mg the first few days because it dopey'd me out a bit much, and consequently the 2nd day my nightly visit from the beast required a 5mg Zomig inhaler...(Neuro gave mea coupel samplers) The inhaler worked pretty well for me, I'm not sure if any better than the sub-lingual pills...they seems to do pretty well for me. But since then (over a week) I have not needed anything but the topamax...and I don't feel all that dopey...wife says my personality has changed...and now I've lost my job... But damn, we all have to dig in from time to time in our lives. Can't just give up! :) The neuro asked me how I was doing I said "fine"...he looked at me funny. I replied "have to keep a good attitude. if you're negative about all this pain it will drag you down." |
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Title: Re: Hi there, I'm new Post by Jackie on Jan 16th, 2004, 1:04pm Hi Ed....welcome to the family. There is a ton of information here as well as unlimited and continual support. My husband, Blake, is also on Topomax. We can't say enough good things about the drug. He has been relatively pain free since August....this is a blessing as he is chronic. The tip to mimimizing side effects seems to be....start on low dosage and gradually work up until the HAs are controlled. He also has GREAT success with the Zomig. Have you tried oxygen therapy or did your doctor suggest it? Good luck and keep us posted on your progress. Jacks 8) |
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Title: Re: Hi there, I'm new Post by Edna on Jan 16th, 2004, 1:44pm Hiya Edski, welcome to your new home. Sorry we had the need to let you in, but glad you found us. You'll get great information here, and wonderful people to learn. Hope you stick around with us, and keep us posted on your progress. I really think you've got it under control dude....."Can't just give up!".......YOU ARE SO RIGHT!! Thanks for your good attitude, you've already got the idea. With your statements, you're already supporting those who need it!!!!!!!!!!! "have to keep a good attitude" Thanks for the reminder to us all! pf wishes, EDNA |
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Title: Re: Hi there, I'm new Post by stevegeebe on Jan 16th, 2004, 1:59pm What the Coonass said. Welcome Ed. Steve G |
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Title: Re: Hi there, I'm new Post by Charlie on Jan 16th, 2004, 2:23pm Welcome aboard and I hope you stick around. Lots of good ideas and ways to handle this horror here. Here is a link to my technique. Worked for me: http://www.netsync.net/users/charlies/ Good luck and stick around Charlie |
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Title: Re: Hi there, I'm new Post by Callico_Kid on Jan 17th, 2004, 1:36am I, too, will try to be brief. Welcome! ;;D Jerry |
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Title: Re: Hi there, I'm new Post by TxBasslady on Jan 17th, 2004, 1:37am ;) Welcome to the board, Ed Can't add to what has already said. Great support and great folks here on the board. Someone usually here 24/7. Feel free to drop in at anytime. Keep us informed as to how you are doing. We're all in this together, so you are not alone! Lotz of pf vibes comin your way......... 8) Jean |
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Title: Re: Hi there, I'm new Post by alladinpain on Jan 17th, 2004, 2:02am Hi, just got correctly diagnosed yesterday with cluster, never realized that for the past 10 years what was thought to be a major sinus problem was really "The BEAST within". I was a diver in micronesia 10 yrs ago and suffered a bad case of mask squeeze, since then the beast visits me at least 3X a year, this week was the worst...I am so happy to find you guys, people who I can relate and equate..... |
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Title: Re: Hi there, I'm new Post by TxBasslady on Jan 17th, 2004, 2:15am Hi Alladin, Welcome to the board. Lots of info here, and check out the links on the left. For help, understanding, and support, you have come to the right place! ;) Sorry that you are in a battle with the beast! Let us know what kind of meds you are on, and by all means, stay with us and let us know how you are doing. Sending lots of pf vibes to ya........ Jean |
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Title: Re: Hi there, I'm new Post by alladinpain on Jan 17th, 2004, 2:20am am having one right now.......took frova, isoptin & vico |
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Title: Re: Hi there, I'm new Post by alladinpain on Jan 17th, 2004, 2:23am jsssss oowwwwwwww this is the 3rd one 2day |
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Title: Re: Hi there, I'm new Post by alladinpain on Jan 17th, 2004, 2:28am sorry cant take this sitting down gotta take walk BRB................gonna walk the beast |
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Title: Re: Hi there, I'm new Post by bothofus on Jan 17th, 2004, 3:00am Hello to all the Newbies from another newbie. Don't believe I can add much to this thread either, but I can't sleep so I'll just bug ya'll awhile. Mine is down to a dull roar right now, so I'm not in as much pain as some here are right now. Normal people just don't understand the intensity of these buggers. I have sympathy to all. |
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Title: Re: Hi there, I'm new Post by BlueMeanie on Jan 17th, 2004, 4:14am Hi Edski. Welcome. It sounds like you have a positive attitude going into a new cycle. That's great to hear. I want to start out by sending you PF vibes and hope it's a short one. I'm always interested when I hear a different story that doesn't seem to fit the norm. Prior to your 13 year remission, did you have any cycles before the 1 year you had with the Beast ? I ask becuase Charlie is the only one I know of that's had that long of a remission. (Can't wait to meet him in Nashville by the way.) If you have not had CH's for that long, read ALL you can. I can't remember when Imitrex and Amerge came out, but they are a couple of good abortives that may work that you have never tried. And then there is O2 and many more. READ READ READ. Everyone kills the Beast there own way. It's part of the game the Beast plays with us. |
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Title: Re: Hi there, I'm new Post by BlueMeanie on Jan 17th, 2004, 4:29am WELCOME ALLADIN. This site has a wealth of info if you spend the time to READ. PFDAN |
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Title: Re: Hi there, I'm new Post by Edski_1 on Jan 17th, 2004, 6:12am Morning Blue Meanie! :) (Like that name!) Prior to my bout in the late 80's I don't *remember* having what would be described as a cycle, but I do recall getting an occasional very bad, very brief headache when I was young...maybe 8 or 10. Or course my hypochondriac mother wouldn't consider it an illness unless it had an accompanying fever.... I also had a relativelt serious concussion when my brother (10 years my senior) man-handled me playing football at about the age of 10...can't remember the sequence of events, but I think I had the "bad, breif" headaches earlier... Docs haven't suggested O2 yet, I guess I haven't complained that the other treatments have been that ineffective. As I've said, I'm considering myself lucky-I've mostly not got these PITA's at night (I have been woken up by them, but infrequently), never felt like I needed to die (have wondered "why?").... But it's not a new cycle...started in late October. And i my 13 or 14 years or "remisssion" I did have headaches...they just never "clustered". I never had them come one after another. This cycle started with me getting them every second or third day, then gradually increasing... I also have a few sysmptoms that I guess are a little unusuall from "classic" clusters. about 50% of my major attacks leave "residual" headaches that can last through the entire next day or two...I rarely get nocturnal attacks (maybe 10% or less), and the daily cyclic nature of the attacks seems a little flaky. If there are "preferred" attack times for me I'd guess they'd be about 7:30 AM, 1:00-3:00 PM, and about 7-9 PM.... But a lot fo the symptoms are classic clusters...the uni-lateral pain in the eye-temple area...the burning/stabbing quality of the pain...the sudden escalation from nowhere...the rapid retreat of the pain...the restlessness...but I also need to be left alone...I've read that many report the tight knot I get in the back of my neck, which the lay person might shrugg off as a tension headach. Nooooooo, that's not a tension headach. In some ways it's almost a pre-sursor-sometimes. Sometimes it arrives withthe beast without warning like most of the rest of the symptoms. Enough old stories now...wife complained I opened dorrs too loud....I'm used to getting up too freakin' early. Said I'd try to look at internet postings for jobs... :) |
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Title: Re: Hi there, I'm new Post by Prense on Jan 17th, 2004, 11:30am Greetings Ed! Keep up that fighting attitude!! Chris |
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Title: Re: Hi there, I'm new Post by Cerberus on Jan 17th, 2004, 1:16pm Welcome ED, Having a good thick skin, a sarcastic sense of humor, and the desire to figure out this malady will help you survive not only CH but the board as well. These are the best people in the world (I know cause I just met many of them). Read up as much as you can, and keep us "up to speed" on how things are going with ya. BUT MOST OF ALL realize you are not alone. Ramon |
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Title: Re: Hi there, I'm new Post by judyw on Jan 17th, 2004, 1:25pm :)Welcome Edski, Alladin, and whomever else joins this thread...sorry to see you, but couldn't have found a better bunch of people to connect with...so relax and join in the family fun....wishing all pfdan....143 |
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Title: Re: Hi there, I'm new Post by thomas on Jan 17th, 2004, 6:28pm welcome aboard |
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