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Title: newbies first post Post by swhitmanp on Feb 21st, 2008, 3:19pm Hi my name is Steve, I am 47 and have suffered cluster headaches for about 15 years. I take Verapamil dailyand oxygen and Excedrin migraine at onset of headaches. I took the survey on this site which asks what medications members have tried and their effectiveness but was wondering if any surveys have been done here on the age ranges of cluster headache sufferers on this site? The reason I ask is that I remember reading in a forum at some other site a while back that several people had written in about friends and family members of cluster patients whos headaches suddenly disappeared after they reached a certain age in their life. Has anyone else heard of these stories? It certainly would be something to look forward to in old age! :-/ |
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Title: Re: newbies first post Post by echo on Feb 21st, 2008, 3:30pm Sorry that you suffer from these little jewels. Glad you found the site. There are a few folks that appear to have the severity and frequency of CH tapper off after they cross over the middle age line. I was hopeful of that happening for me, but it has not. I don't know if mine were worse in my 20s and 30s or that I've just gotten used to them now that I'm in my 50's. |
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Title: Re: newbies first post Post by LeLimey on Feb 21st, 2008, 3:43pm Hi Steve it's nice to meet you :) I think we've all heard those stories and there are certainly people here who have been hit free for quite a while (like Jimi but he's older'n dirt!) At the end of the day it's better to live with it than consider the options! I hope you get some pain free time soon but welcome to the best place there is for clusterheads. Excedrin isnt going to help you too much. It's the wrong sort of painkiller. CH hurts because the blood vessels in your noggin dilate and squish everything else. What we need are vaso constrictors to reduce them again. Have you tried any triptans? Have a look at info here about coffee and energy drinks like red bull. A lot of us find those extremely helpful home remedies. Look after yourself! Helen |
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Title: Re: newbies first post Post by Guiseppi on Feb 21st, 2008, 3:57pm I'm almost 48, I was hoping for the "grow out of em" to happen to me. Then Sail Pappy, who is older then the ocean, broke it to me that age alone wasn't the answer! :( Like Helen said, I HOPE every cycle is the last one, but each time the beast returns I sigh, get back on my lithium, check the oxygen and imitrex stock, and get ready to do battle. Live your life bewteen the hits! Glad you found us, welcome to your second family. Guiseppi |
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Title: Re: newbies first post Post by AussieBrian on Feb 21st, 2008, 4:00pm It may well be nothing more than a rotten, filthy rumour with no basis in fact at all - but that won't stop me believing it. It gives me hope. |
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Title: Re: newbies first post Post by seasonalboomer on Feb 21st, 2008, 4:16pm My dad seemed to age out of his in his late 50's after he retired. He got one last round a few months before he passed away just as a parting gift I guess. So I don't know which part of what I just said is gloomier: -"his late 50s'" -"before he passed away" -"as a parting gift" He had a great run with nothing for about 6 or 7 years before then though - -and he had, in his day, cycles that were of a greater length than his hiatus's. Hang in there. Scott |
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Title: Re: newbies first post Post by swhitmanp on Feb 21st, 2008, 4:29pm :) Thank you for the warm welcomes I realize that the only incredient in the Excedrine that is helping me is the caffein and you are correct in the fact that I should probably switch to coffee or energy drinks as it is I`m sure better for my stomach. I used to think that Imitrex was such a godsend until I realized the rebound headaches were just as predictable to come each time I used it and my insurance only covers about 4 shots each twenty days or so. I did however read the tip on this site about cutting the dose and think this might be worth trying. Glad to know I`m not alone in this battle. Thanks, Steve |
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Title: Re: newbies first post Post by Jimi on Feb 21st, 2008, 4:32pm Welcome to the board Steve. I suffered clusters for over 30 years. They did change as I got older. Longer and longer in between time. I had my last cycle in 2000. It lasted longer than any other. 6 mos in fact but that has been my last one. DJ's last one was about the same time. Charlie has us all beat. I can't remember how long. I am thinking about 10 years or more. So keep coping but keep hoping. ::) |
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Title: Re: newbies first post Post by BarbaraD on Feb 21st, 2008, 5:19pm Steve about the Excedrin -- if taken too often they will cause rebound headaches. It's ok ever once in a while (I take 3 with a cup of coffee or an energy drink in an emergency, but can't take them more than a couple of times before I get a rebound). Have you tried ergotomine (Cafergot). It doesn't seem to have the "bad" effects of Imitrex. I keep it as a "standby" in case the O2, energy drinks, or coffee doesn't work. It's an OLD vaso-constrictor, but I like it a lot better than the trex's. I'm older than dirt and am chronic, but am looking forward to these things stopping any day now.... :D Several people have had it happen..... Maybe if Linda H and I would quit lying about our ages...... :-/ oh well.... Hugs BD |
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Title: Re: newbies first post Post by Jimi on Feb 21st, 2008, 5:33pm I agree Barb. You don't hear much about Cafergot anymore. But the suppositories worked well for me all these years. When I added 02, the cafergot seemed to hold off the next one for a few hours. You me and BobP. But like a lot of other things, newer is not always better. ;) |
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Title: Re: newbies first post Post by Bob P on Feb 21st, 2008, 6:01pm The old farts, takin' the old medications (yep, that includes you too Joe). Mine are getting farther apart as I get older also. Last remission was 3 yr 3 mo. long but the episode lasted 5 months when it came (longest ever). Maybe, like Jimi, it was the last one for a while (hope so, I have to start building the retirement house this Fall). |
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Title: Re: newbies first post Post by Guiseppi on Feb 21st, 2008, 6:04pm I see you already mentioned oxygen. If I use only oxygen, the headache returns in 10-20 minutes. I've tried staying on the 02 10-20 minutes after the pain is gone, still the same result, head ache returns. Now I pop 1-2 oral cafergot, I try and guage the intensity of the oncoming attack, then start the oxygen. The 02 knocks it down in 8-10 minutes, the cafergot buys me up to 12 hours. The only real side effect for me is the "coffee jitters." It's kept me awake all night a time or two. Using that combo I've all but eliminated the need for imitrex injections. (Although they stay in my pocket or glove box just in case!) Might be worth a try. Cafergot is very cheap so if you don't have prescription coverage it's a great alternative to try. ;) Guiseppi |
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Title: Re: newbies first post Post by Jimi on Feb 21st, 2008, 6:16pm Thats exactly the way it worked for me too. If I didn't know better, I would think that you and I have a lot in common. ::) edited to add: Of course you are the new and improved version. :P |
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Title: Re: newbies first post Post by chewy on Feb 21st, 2008, 6:17pm I'm one of those stories. Sort of. My CH started when I was around 18. 2 to 3 cyles per year. 2-3 month cycles. I'm now 50 and haven't had a full blown cycle in about 5 years. I still get the occasional hits, shadows and mini cycles but nothing close to the extent I had for 25 years or so. |
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Title: Re: newbies first post Post by Guiseppi on Feb 21st, 2008, 6:52pm edited to add: Of course you are the new and improved version. Can't wait to get home and tell the queen she's married to the "new and improved" version! That's sure to put a twinkle in her eye. :P To Bob for the old fart crack! :P Guiseppi |
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Title: Re: newbies first post Post by kcopelin on Feb 21st, 2008, 7:07pm Well I sure hope I grow outta these :P started in 1981 episodic every couple of years-with more time off for having babies-, turned chronic Feb 2005. Menopuase is past....that didn't help. Arthritis has set in ...that didn't do it. got bi-focals-no help. Cholesterol is up- no help for CH there. No, :-/in my case growing older just means...well...growing older. now, where did I put the telephone? :o welcome to your new home, many of us are quite sane, some are normal, all are related by shared pain. kathy |
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Title: Re: newbies first post Post by BlueMeanie on Feb 21st, 2008, 7:27pm on 02/21/08 at 18:01:38, Bob P wrote:
That's how it seems to be for me. That longer between cycles, the longer the cycles last. Yes some do get very long periods. So far I'm one of the lucky ones this time around. I've had a couple of older gentlemen tell me theirs ended all together, but alot of people say they have clusters. Not sure if they actually did have Clusters though. I guess you really just never know. |
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Title: Re: newbies first post Post by Jonny on Feb 21st, 2008, 8:31pm 23 years chronic no meds, no diagnosis......31 years total chronic.....14 months PF......6 weeks of hits.....one year PF.....more hits......I guess I went episodic. Im running out of Zomig NS, so if you got extra let me know (But, dont tell Chewy, he might call the cops on you!) Hang in there, Steve....you got family that knows now! |
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Title: Re: newbies first post Post by George_J on Feb 21st, 2008, 9:35pm Welcome, Steve. By all indications, I'm one of those whose CH is fading as well. I started with CH at the age of 13. I'm 54 now. I've always been episodic, with cycles that last 6-8 weeks. For twenty years, I cycled twice a year, spring and fall. For the next ten, I cycled once a year. My last three cycles have each been three years apart. The last one ended in the spring of 2006. A typical cycle is still 6-8 weeks long. So it appears that they're becoming less frequent--without increasing in duration. I'm not ready to say that I'm out of the woods yet, though. Who knows, eh? People here have speculated (without much evidence, sadly) that CH as a condition may have a natural lifespan. Here's hoping that it does, and that its lifespan does not exceed my own. ;) Best wishes, and again--welcome. George |
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Title: Re: newbies first post Post by swhitmanp on Feb 21st, 2008, 9:41pm As if the clusters weren`t enough I am going in this monday for hip replacement surgery and my doctor won`t prescribe the cafergot because of the avascular necrosis I am having in my hip joint. :( I guess I`m damned to a life of coffee and late night television. |
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Title: Re: newbies first post Post by Jonny on Feb 21st, 2008, 9:45pm on 02/21/08 at 21:41:03, swhitmanp wrote:
Sounds good to me....as long as I dont have to work....LOL ;;D |
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Title: Re: newbies first post Post by swhitmanp on Feb 21st, 2008, 9:52pm yOU`RE A RIOT JONNY... CHEWY WARNED ME ABOUT YOU! ;;D |
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Title: Re: newbies first post Post by Linda_Howell on Feb 22nd, 2008, 12:06am I see you are in Knights Landing, California. Where abouts is that? Linda who's lived in Calif. all her life. |
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Title: Re: newbies first post Post by imnotbub on Feb 22nd, 2008, 12:20am I was a one episode a year guy until two or three years ago, and then "poof". Nothing since. ( I know I just jinxed myself but what the hell.) I just turned fifty so let's see if the demon has retired. Steve [smiley=curtain.gif] |
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Title: Re: newbies first post Post by swhitmanp on Feb 22nd, 2008, 12:36am Knights Landing, CA is about 35 miles northwest of Sacramento and is on the Sacramento River. Born and raised in Woodland |
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Title: Re: newbies first post Post by Charlie on Feb 22nd, 2008, 1:10am Welcome aboard Steve but I'm sorry that it has to be because of this horror. To answer your question: My first hit was in 1969 and my last was 1991 when I was 45. I'm not alone but I rarely find anyone new that has been so lucky. It's fine with me. 45 is unusual. It may have to do with my epilepsy or perhaps the anti-convulsants. I took a lot of Inderal too but that wasn't why they disappeared. Here is what I used to keep basically sane all those years: Good luck and keep in touch. Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: newbies first post Post by AussieBrian on Feb 22nd, 2008, 2:36am on 02/21/08 at 15:57:42, Guiseppi wrote:
Sail Pappy's a pornogenarian. He's allowed. |
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Title: Re: newbies first post Post by LeLimey on Feb 22nd, 2008, 6:33am on 02/22/08 at 02:36:36, AussieBrian wrote:
There's more pornogenarians here than just poor old Sailpappy and it's not age related either! ::) |
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Title: Re: newbies first post Post by AussieBrian on Feb 22nd, 2008, 6:39am on 02/22/08 at 06:33:28, LeLimey wrote:
So speaketh the sexygenarian. |
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Title: Re: newbies first post Post by sandie99 on Feb 22nd, 2008, 7:11am Warm welcome, Steve! :) I sure hope that I'll grow out of ch one of these years, because mine begun when I was 21, back in 2001. Sanna |
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Title: Re: newbies first post Post by chewy on Feb 22nd, 2008, 7:26am Use caution with whom you help. Most are grateful. Some are not. http://img.photobucket.com/albums/v388/bgull2/3202310120.jpg?t=1203683016 |
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Title: Re: newbies first post Post by E-Double on Feb 22nd, 2008, 7:28am I myself am of the ancient age of..... 34 Still kickin' so I'll let you know in another 34 yrs if I grew out of them. By then ofcourse it will be completely telepathically and I will control your mind |
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Title: Re: newbies first post Post by Linda_Howell on Feb 22nd, 2008, 1:49pm Quote:
Alrighty then. I live in Redding. Maybe when CalOUCH has another get-together we can all meet up. One more question? What does your screen name mean exactly? |
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Title: Re: newbies first post Post by BobG on Feb 22nd, 2008, 2:20pm I'm 61 now. My last true cluster was about 7 years ago. I still get individual attacks on occasion but they are mild and quickly killed with an ice pack. Out grow clusters? Maybe yes, maybe no. I don't know. |
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Title: Re: newbies first post Post by LeLimey on Feb 22nd, 2008, 2:31pm Outgrowing Clusters was invented in Las Vegas - isn't that right Bob?! ;) |
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Title: Re: newbies first post Post by chewy on Feb 22nd, 2008, 3:44pm on 02/22/08 at 14:31:47, LeLimey wrote:
Quote:
Funny you should note that. I started making 2-3 times a year pilgramages to Vegas for about 5 years now. Hmmmm? |
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Title: Re: newbies first post Post by Melissa on Feb 22nd, 2008, 4:06pm on 02/22/08 at 07:28:53, E-Double wrote:
but he acts like he's 36.;) As for age and clusters, I'm one that thinks that the earlier you developed them, the sooner they'll disappear and if you got them later in life, they'll be around when you're older. Just my opinion though. BTW, I'm 33 and have had them since I was 16 (so that's 17yrs now) |
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Title: Re: newbies first post Post by swhitmanp on Feb 22nd, 2008, 4:13pm Yes Linda.... as to my screen name.. I am not a hit-man so if you are looking to have someone offed I can`t help you. It`s "S" as in Steve Whitman which is my last name and "P" is for my middle name Paul ;;D By the way.. Do many other CH sufferers seem to share my dry sense of humor? :-/ So when is this California convention and do they give out Imitrex door prizes? Nice to meet you SW |
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Title: Re: newbies first post Post by swhitmanp on Feb 22nd, 2008, 4:17pm How do you post a pic on this site? :-/ |
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Title: Re: newbies first post Post by Melissa on Feb 22nd, 2008, 4:22pm on 02/22/08 at 16:17:42, swhitmanp wrote:
http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=profiletip;action=display;num=1100187570 |
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Title: Re: newbies first post Post by Jonny on Feb 22nd, 2008, 4:22pm on 02/22/08 at 16:17:42, swhitmanp wrote:
Click on the button that looks like a picture You will see this ....[im.g][/img]..... You want to put the pictures URL between the brackets like this .....[img]www.picture.com[/im.g]......Without the dots Make sure you hit the "Preview" button fist to see if the pic shows before you hit "Post Good luck and nice to meet you! |
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Title: Re: newbies first post Post by Linda_Howell on Feb 22nd, 2008, 4:38pm Quote:
That's O.K. I like to take care of things like that myself. More gratification that way. Quote:
Stick around and read. You'll find out. ;;D Quote:
It's not a convention, just a get-together with other Californians and a wayward Las Vegan. The first I arrainged it and it was in Sacramento and last year Guioseppi here hosted it in San Diego. We aren't certain about this year yet, but I will let you know. However, there IS a yearly O.U.C.H. convention. This year it will be in Dallas in July. http://www.ouch-us.org/gatherings.htm Linda |
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Title: Re: newbies first post Post by swhitmanp on Feb 22nd, 2008, 5:06pm so you can`t post a pic from a file on ur computer? only URL? :-[ |
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Title: Re: newbies first post Post by Melissa on Feb 22nd, 2008, 5:09pm [quote author=swhitmanp link=board=general;num=1203625156;start=25#42 date=02/22/08 at 17:06:44]so you can`t post a pic from a file on ur computer? only URL? :-[/quote] correct. you need to upload the pic first to a webhosting site like photobucket.com or shutterfly.com first |
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Title: Re: newbies first post Post by Jonny on Feb 22nd, 2008, 5:27pm on 02/21/08 at 21:52:44, swhitmanp wrote:
It dont get much lower than that! ::) |
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Title: Re: newbies first post Post by Rosybabe on Feb 22nd, 2008, 7:54pm http://i24.photobucket.com/albums/c27/escobar40789/Disney/welcomebanner6.gif Hi Steve! Welcome aboard! I started having CH at 12, I am 36 now so I do feel like it has been a loooooooong time ::)..I do wish this torture will go away in a few more years but you know, there is always hope :).. Glad you found your way to this place! Pain free wishes! Rosy. |
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Title: Re: newbies first post Post by swhitmanp on Feb 22nd, 2008, 7:56pm http://swhitmanpphotos.shutterfly.com?a=1 hmmmmmmmmm does not seem to be working for me :-/ |
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Title: Re: newbies first post Post by Melissa on Feb 22nd, 2008, 8:01pm on 02/22/08 at 19:56:52, swhitmanp wrote:
That's because you're using the url of the whole webpage, not the individual picture itself. You need to right click on the picture itself, click on properties and then copy and paste the url of that. http://shim1.shutterfly.com/procgserv/47b8dc03b3127cce98548a74a4d300000029102QbM2rFu2Ze |
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Title: Re: newbies first post Post by Jonny on Feb 22nd, 2008, 8:05pm Way to go, Melly! :-* |
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Title: Re: newbies first post Post by swhitmanp on Feb 22nd, 2008, 8:13pm cool thankshttp://shim1.shutterfly.com/procgserv/47b8dc03b3127cce98548a74a4d300000029102QbM2rFu2Ze |
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Title: Re: newbies first post Post by Melissa on Feb 22nd, 2008, 8:17pm you're welcome :) |
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Title: Re: newbies first post Post by Jonny on Feb 22nd, 2008, 8:17pm BINGO!, Bro ;) |
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Title: Re: newbies first post Post by DonnaH_again on Feb 22nd, 2008, 9:08pm Hi and welcome! I'm another one who does not have clusters anymore. I started at about age 20 and they quit at age 48 in 1986.....so I had them twice per year, 6 weeks each, for 28 years. I am convinced that they are hormone related (the hypothalamus regulates hormones) and have a long personal story that leads me to believe this. ;) Yes, there is concrete reason to hope!! Since joining this wonderful family in 1999, I have been suggesting that they have a hormone level evaluation by their family doctors, but so far, no one that I know of has. We'll have to wait for Dr. Goadsby to come up with a solution. You will find out about the good doc by doing your homework using the menu in the left margin. There's a lot of good info there! |
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Title: Re: newbies first post Post by swhitmanp on Feb 23rd, 2008, 12:35am http://shim1.shutterfly.com/procgserv/47b8dc03b3127cce98548a7525e200000020102QbM2rFu2Ze |
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Title: Re: newbies first post Post by swhitmanp on Feb 23rd, 2008, 12:47am http://shim1.shutterfly.com/procgserv/47b8dc03b3127cce98548a70a4d700000020102QbM2rFu2Ze http://shim1.shutterfly.com/procgserv/47b8dc03b3127cce98548a7125e600000020102QbM2rFu2Ze |
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Title: Re: newbies first post Post by Rosybabe on Feb 23rd, 2008, 3:44pm that is a cute little boy ! :) |
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Title: Re: newbies first post Post by swhitmanp on Feb 23rd, 2008, 4:58pm yes...thank you my grandson ;) |
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Title: Re: newbies first post Post by Melissa on Feb 23rd, 2008, 5:11pm Steve, he is very adorable! |
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Title: Re: newbies first post Post by Jonny on Feb 23rd, 2008, 6:01pm Steve, Your using shutterfly.....left click the picture to make it bigger and then right click it to get the URL. ;) |
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Title: Re: newbies first post Post by swhitmanp on Feb 23rd, 2008, 7:48pm http://shim1.shutterfly.com/procgserv/47b8dc03b3127cce98548a70a4d700000027102QbM2rFu2Ze http://shim1.shutterfly.com/procgserv/47b8dc03b3127cce98548a7125e600000027102QbM2rFu2Ze I`m learnin` thanks jonny |
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Title: Re: newbies first post Post by Jackie on Feb 23rd, 2008, 7:55pm What a little cutie....handsome! Great pictures. Welcome to the site too... Jackie |
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Title: Re: newbies first post Post by Jonny on Feb 23rd, 2008, 8:01pm Your doing great, Steve! [smiley=headbanger.gif] |
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Title: Re: newbies first post Post by BobG on Feb 23rd, 2008, 8:04pm on 02/22/08 at 14:31:47, LeLimey wrote:
Yep! on 02/22/08 at 16:38:06, Linda_Howell wrote:
Hey Linda, how about in Baker this year. In July? Nice and warm and close to home. |
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