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Topic: Hi All - Newbie Here (Read 319 times) |
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BlackDog
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Hi All - Newbie Here
« on: Jun 12th, 2003, 1:11pm » |
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Hi All -
My name is Darren
This is my first post, here or on any message board. I have been reading your posts all week. My first thoughts were, "Finally, someone else who knows what I am going through". Then I was more like. "how sad, that anyone else has to suffer like this". It is a pleasure to meet you fine folk, and my heart goes out to each of you. I have only been suffering 2 years, and am in the second week of my second ever cycle. I cannot imagine how you have all endured so much for so long.
To sum up this current cycle, I was walking into the market with my wife the other day. She asked me how was doing. I said, "you see those kids over there? I want to rip their MF'n heads off!!!" She understood. Then we shopped. There was a fly in my house last night. I seriously concidered shooting him. This sucks. I am very fortunate. I had an ER trip early in this cycle and now have the attention of some good docs who seem to care. I have a bag full of medicines, a few tanks of O2, and an extremely supportive wife. I am finding my "cocktail".
All of you have already helped me with your past posts. I will share with you all what is working or not for me when I can focus a bit better. The beast is sleeping right now and I am thankful for that.
Sorry for being down...now let's boogie!
BlackDog
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TomM
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Re: Hi All - Newbie Here
« Reply #1 on: Jun 12th, 2003, 1:14pm » |
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Welcome, BlackDog.
Rest while the beast is resting.
Can you tell us more about your cycle?
What meds do you have?
TomM 
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"Everyone should believe in something. I believe I'll go fishing."
--Thoreau--
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Live4Fun
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One day at a time, we WILL make it through.
 
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Re: Hi All - Newbie Here
« Reply #2 on: Jun 12th, 2003, 1:29pm » |
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Blackdog,
Welcome aboard! Glad you found us  , but sorry you had to... 
Here's hoping the beast stays asleep...
Wishing you PFDANs
Bryan
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"If you hear a different drummer, dreamer take a chance... The road you choose to follow means the difference in the dance." (D. Morgan) -- Bryan
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cathy
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Re: Hi All - Newbie Here
« Reply #3 on: Jun 12th, 2003, 1:31pm » |
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Hi BlackDog....welcome to the board, sorry you've had to join us here, but happy that you've been helped by the information available....seems you've been lucky to have found a doctor who knows about clusters.
Good Luck...keep us updated...you've found boogie wonderland! 
Cathy
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nancyann
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Re: Hi All - Newbie Here
« Reply #4 on: Jun 12th, 2003, 1:32pm » |
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Quote:| "you see those kids over there? I want to rip their MF'n heads off!!!" She understood. |
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I understand completely. I too have felt the same.
I wish that I could say that my husband did (Understand that is). He is a very good man and he tries though. He really does try. I think that he feels very helpless in that there is really nothing that he can do for me.
WELCOME!!!
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BlackDog
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Re: Hi All - Newbie Here
« Reply #5 on: Jun 12th, 2003, 1:39pm » |
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It started may 28th. I knew it instantly. This is what happened last summer. No mistaken it. Mis-diagnosed all summer last year. Then it stopped. I fogot and got on with my life. Until the beast awoke and decided to play.
I went to ER one week ago. Was given Lidocane, no help...O2, no help...and laid there 2 hours in pain. The neurological consult got me an appointment in her office this monday. I know the usual wait time for a neuro is like 2 months! I am on Prednisone taper-down dose, and I feel it. The attacks have become much more frequent, but a bit less severe since the prednisone. They are also coming at unusal hours now instead of always at the same time. I have had insomia pretty bad this time. I have Imitrex and Migranol Nasal and both work sometimes. Oxygen for me is about as effective as everything else. about 30% of the time, if I feel it coming, O2 will keep it at bay. I have some sleeping pills, but I am kind of afraid to use them. I have some codiene and percocet for when all else fails. I know they wont do anything, that is why I still have them. But at least it may keep me from going to the ER.
I am also on some blood pressure stuff:
Toprol XL 50mg
Accupril 40mg
Vitamines, aspirin, etc...
AND I am on my fourth day of Lexapro (10 mg)! Seems I needed some help adjusting to this new lifestyle.
BlackDog
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Woobie
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Re: Hi All - Newbie Here
« Reply #6 on: Jun 12th, 2003, 1:48pm » |
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Just wanted to say hi.
and about those kids in the store... i'm just a supporter, no CH here.... and I feel like that too sometimes!@!! LOL
dont we all??
welcome
Tina 
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BlackDog
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Re: Hi All - Newbie Here
« Reply #7 on: Jun 12th, 2003, 2:11pm » |
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You are so right! I had that thought plenty of times before all my headaches. Shooting the fly...that was a new one!
Nice to meet you!
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cootie
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Re: Hi All - Newbie Here
« Reply #8 on: Jun 12th, 2003, 2:25pm » |
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Hi BlackDog......nice to meet you...jus stay in yer boat and don't fall out and you'll manage....got good info and good support here ! Umm yeah I know what ya mean about the kid deal esp in a resturant.....Brad moves.....I'm a supporter but man oh man do I ever get them same feelings.....got a wasp in my camper rite now I want to take a roadside torch to.....and I'm in a crabby mood which don't help !! Pam that wants to debug with power !
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Cause and Effect......"Cause is the effect concealed, Effect is the cause revealed"
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ZAIRA
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Re: Hi All - Newbie Here
« Reply #9 on: Jun 12th, 2003, 3:06pm » |
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Welcome Darren, nice too meet you, my name is Zaira and I write you from Italy. I am sorry to read about your beast  ... but you are not alone and now you are in a big family!
Be strong and remember that as long as we keep working through OUCH, we will win this fight. 
Stay with us ;D... know that other people fight every day against the same beast... it makes a great difference... Zaira
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Love yourself, Love others, Love often, Forever!
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BlackDog
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Re: Hi All - Newbie Here
« Reply #10 on: Jun 12th, 2003, 3:23pm » |
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Thanks You all. I plan on gettin' comfy and staying around, if you all don't mind. I wish it wasn't so, but it is and that is that. No point bitching about it. (or is there?) 
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Live4Fun
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One day at a time, we WILL make it through.
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Re: Hi All - Newbie Here
« Reply #11 on: Jun 12th, 2003, 3:26pm » |
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Bitch all you want! Believe me it helps!!!
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"If you hear a different drummer, dreamer take a chance... The road you choose to follow means the difference in the dance." (D. Morgan) -- Bryan
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stevegeebe
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Re: Hi All - Newbie Here
« Reply #12 on: Jun 12th, 2003, 6:39pm » |
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Welcome Blackdog.
Your 2nd post and seems as though your geared-up.
If your still on Pred taper-down you may not want to take asprin (and other stuff). Please check. Ask your Pharmasit.
Steve G
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Mark C
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Re: Hi All - Newbie Here
« Reply #13 on: Jun 12th, 2003, 6:44pm » |
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Welcome again Darren,
Hey NancyAnn, we found us another "rage against the beast" person ......and I am glad. I to have wanted to fold, spindle and mutiliate anything in my path when the beast wants to dance...so shoot away.
I used to have this S&W model 66 .357 that you could shoot a fly with....dead on!
PFDAN's
Mark
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BlackDog
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Re: Hi All - Newbie Here
« Reply #14 on: Jun 12th, 2003, 11:38pm » |
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Thanks Mark,
Now that's exactly what mean!
Neighbors don't like me shootin' at their flies, they ought to pick up their GDMF'n shit.
Did I say that out loud?
"Rage againt the Beast"?! - Damn Strait.
Darren
Steve, thanks for the info. All this GDMFPOS stuff to remember, keep track of, etc. I have a GP and a Cardiologist. Now also a Neuro and many new drugs. It was just a simple blood-pressure thing. This is all so new to me so your input = much appreciated. Now excuse me while I cram this armchair into the laundry chute...
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| « Last Edit: Jun 12th, 2003, 11:46pm by BlackDog » |
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Charlie
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Re: Hi All - Newbie Here
« Reply #15 on: Jun 12th, 2003, 11:49pm » |
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Welcome Darren and you describe what so many have felt. Sounds like you have some good support and now you have this place as well. Stick around. What follows is a technique that helped me when I was hit...some others too.
Dr. Wright's Circulatory Technique
This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many.
When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand.
This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate.
I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended.
This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience.
When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance.
I wish you the best of luck - Charlie Strand
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There is nothing more satisfying than being shot at without result---Winston Churchill
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BlackDog
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:)Re: Hi All - Newbie Here
« Reply #16 on: Jun 13th, 2003, 12:11am » |
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Charlie, THANKS!!
That is exactly what I originally came here for. When I realized this was how things were going to be, I knew had to learn how to kick it's GDMF'n arse. ANY tips / tricks are worth EVERYTHING to me. You know. Anything that works...ANYTHING is better than doing the 2AM tango. I have so much to learn. And I appreciate your support.
Darren
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gene
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Re: Hi All - Newbie Here
« Reply #17 on: Jun 13th, 2003, 12:29am » |
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another newbie,
I was one wk into my cycle/ they usually last from 4-6 weeks,
er prescribed a prednisone taper// 60 mg for 7 days then 10 less every day til gone.
Results phenomonal!! No more attacks and cycle seems to be gone!!
My advice? GET Meds/ no reason to suffer ch if your lucky like me and meds are effective.
E-mail me any time you wish
Gene
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catlind
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Re: Hi All - Newbie Here
« Reply #18 on: Jun 13th, 2003, 6:21am » |
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Welcome aboard Darren,
I am sure you have already been through the site as you mention a few things from here. Be sure to read the Oxygen page, it will give you the proper way to use O2 so it can help. That doesn't mean it will be 100% successful for you, but it may increase the effectiveness.
Sounds like you have a good handle on things. Glad to have you aboard. You can rage and vent and cry and throw temper tantrums here and everyone will understand. You have come to a good place for support 
Cat
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