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wobbie64
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Hi..I'm Wobbie....NOT woobie..lol
« on: Feb 29th, 2004, 6:38pm »
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Hey everyone, Been here awhile, first time publicly responding...Usually, I talk at the computer screen... I want to thank WOOBIE for giving me the advice to do this....I never even thought of posting a new intro to myself...I can be thick at times,,,then again, I'm genetically predisposed to be that way..(male)..Thank You again for the suggestion..Dear...
I have Chronic Clusters , and I am a Jerry's Kid..(Muscular Dystrophy, LGMD). Other then that, I'm healthy as a horse. .lol
 I'm a stay at home dad, and I enjoy working around the house, just finished putting in a complete bathroom, only took 2 yrs. lol...my daughter and I like camping, teaching her to ride our atv (Polaris Magnum 500), and I score adult softball leagues in the summer and fall.    
I average 50+ attacks a month,(no, thats not a typo, I added my calender again, screwed up on my post in another forum, sorry) I have been a chronic CH sufferer since 9/89... combined with the fun activities of trying to walk long distance on my own, getting dressed without the help of my 7 yr old daughter (Single Dad), and the simple little things like eating, taking showers, and all of the other everyday tasks that most people take for granted. But there is one thing that anyone who ever has met me, will tell you,  I dont complain..IT DOES NO GOOD...... I have a great ability to prove doctors wrong..They said i would be wheel chaired by the age of 35, I turn 40  this summer, and i barely use a cane.  I love to make them eat their words...But I have a new definition of doctors, maybe some of you will agree, They are "Professional guessers in white coats"
and alot more expensive then the guessers at CedarPoint.  
I have 2 doctors that I see..Dr Robt Kunkel at the Cleveland Clinic, and Dr Glen Soloman in Chicago. BUT, there is a new Doc in town, he is Dr Bahran Guyuron, granted, he is a plastic surgeon, but he has stumbled upon a possible Cure, thats right, a cure for migraines...The next quest is to see if his procedure can help with the beast ..God, i can only hope so..  If anyone is curious, you can go to www.newsnet5.com
   for the story...We might actually all have a chance at the minimum, 50% decreased, versus what we have been dealing with.
Click on the health tab, and you will see the video and follow up stories on this...My main Head doc is Dr Glen Soloman, maybe some of you have heard of him?? He is one of the top ranked specialists in the country..He moved from Cleveland to Chi-town about 2 yrs ago, but I still trust him with my life..You can look up his research on the web..  He suffered from the beast for years also..Luckily, they have stopped for him.  BUt he truely understands what we all go thru...
Currently, i have just started a new cocktail of meds, the last few days have been wonderful..in the last 8 days, i have only had 2 attacks..Considering, thats my usual for 1 day,   I am in heaven. (well almost)...And I was told that the full effect of the meds should take about 2 weeks to work.  So 1 week down, and 1 to go...Here's hoping...
For those who are curious, heres the mix...
*Verapamil 240 SR----morning
*Atenolol 50mg ------ morning and night
*Baclofen 20mg ------morning and night
*Indocin ---------------morning and night
*Spastrin-------------- Night
 
well, im off now, have a shadow following me, time for the shower dance..lol....
PS...i havent lost my weenie.....I look forward to making new friends here.....Robb
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BobG
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #1 on: Feb 29th, 2004, 7:11pm »
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Hey Robb. Welcome.
Love your attitude. You're a fighter and that's what we need here.
Read your list of meds and didn't see oxygen. Have you tried it as an abortive? There's a button on the left that tells about 02.
One of Jerry's Kids huh? Jerry lives here in Vegas. Folks here go all out for him on Labor Day.
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #2 on: Feb 29th, 2004, 7:55pm »
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50 a month!? I would surely be stark raving mad by now. Feel so bad that you're suffering so much, but it sounds like you have the spirit to deal with it, and you've found good doctors. Keep up the fight.
 
I agree with you about proving the docs wrong. I believe mental attitude can have alot to do with any medical problem/treatment. I hope you continue to prove them wrong.
 
And like BobG said, definitely try the O2, if you're not using it already.
 
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thebbz
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #3 on: Mar 1st, 2004, 12:57am »
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Hello Im John Bebee. Have had CH for many years episodic. No prevents have worked. I did'nt post an intro here, just jumped in. Heart goes out to you. In a cluster for this is 8thweek usually they last 2 to 4mths. One or two a year. This is my 25th year. Keep up the fight. I thank you for intro   John and Joan Bebee  thebbz
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #4 on: Mar 1st, 2004, 1:06am »
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Welcome to the board, Wobbie.
 
Seems like you have the right combo of meds that are working for you.
 
Stay with us......let us know how things are going for you.
 
PF vibes,
 
Jean
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #5 on: Mar 1st, 2004, 11:12am »
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Welcome Woobie64!  I just have to say that believe it or not my dog's name is "Woobies".  Her real God-given, Christian name is Autumn but I call her "Woobies" or the "Woobie Doobies" or "Woob Woobs" or "Doob Doobs".  She has a great attitude about life and so do you! She also proved the doctors wrong....she ate 24 bags of wedding rice complete with white ribbons, plastic white doves, and gold rings.  That didn't expect her to make it but she did.  The vets call her their "miracle" dog. Sounds like you're a miracle too!
 
>"Professional guessers in white coats"....yeah, I like that one.
 
Glad you found this site.
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #6 on: Mar 1st, 2004, 1:30pm »
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Hi Robb and welcome.
 
   Glad you cleared up the name thing.  We gotta watch our "O's" and "B's" don't we?   lol
 
   You sound like a great guy and all I can add here is to echo what BobG said...Have you tried oxygen?  If not, you might want to ask you Dr. about it.   It works for most of us without the ugly side efffects of some drugs.
 
50 hits per month is nothing for us chronics, is it?  lets see....I get hit an average of 5 times per day. 5 times 30 is....jeeze, I had to go do the math, didn't I?   LOL
 
 
Anyway welcome to our world Robb and please stick around.   Linda
 
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #7 on: Mar 1st, 2004, 2:42pm »
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Welcmoe Robb, glad you desided to come out of the shadows. We can use people with a good attitude. I learned that if I let these damnable HA's get me depressed I seem to get more.   How old is your daughter. I know that my 6 year old is a great help with me. I dont have MD, but my mom has adtances MS and I have Auto-immune issues, Hoshimoto's hypo thryroid and Rhumutioud Arthitis. So there are times when I cant even dress myself cause my hand lock up.  
 
Pain Free wishes to you.  I will forward that article to my mom who has migrains.  I hope that they try it with a cluster sufferer and see if it helps them. I think that they would have to do it to a chronic sufferer because an eposodic might stop having them and it just could be a cycle end.  
 
Tiannia
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #8 on: Mar 1st, 2004, 5:14pm »
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Sorry you have a reason to be here but WELCOME!  Many people here with great advice that can help.  Good luck and PF vibes!!!
Andrea
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #9 on: Mar 2nd, 2004, 4:37pm »
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Hey Robb!
 
Welcome to the clan and glad that your finally posting.  Everyone's info counts and may end up being very helpful to others.  
 
Wishing you more PF days,  
 
Belle
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Re: Hi..I'm Wobbie....NOT woobie..lol
« Reply #10 on: Mar 3rd, 2004, 8:40am »
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LMAO!!  Welcome Wobbie.......  
Thanks for clearing up any misunderstandings.. LMaO!!
 
You sound like a cool guy, with a cool attitude... stick around!
 
tina Kiss
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