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Topic: Re: I'm Back. Sorry to say.... (Read 672 times) |
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Miklos
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Re: I'm Back. Sorry to say....
« on: Sep 18th, 2006, 12:18am » |
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You could have hung in here with us when you were pain free, but you chose not to. Now you are back. And, we should feel what?
I do not do a lot on the board, but I stay here all the time and contribute, however slightly, when I can.
Be well.
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wobbie64
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Re: I'm Back. Sorry to say....
« Reply #1 on: Sep 18th, 2006, 12:23am » |
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A simple yes i have heard of something or no i have not would have sufficed. Instead, you feel the need to be sarcastic. This is EXACTLY why I left the first time after only 7 post or so. Thnks for reminding me.
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TxBasslady
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Re: I'm Back. Sorry to say....
« Reply #2 on: Sep 18th, 2006, 12:44am » |
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Well, Mike....you handled that quite professionally 
WTF  Had a bad day
If you don't want to support this guy...then don't respond to his post.
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
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Charlie
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Re: I'm Back. Sorry to say....
« Reply #3 on: Sep 18th, 2006, 1:23am » |
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Charlie
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TxBasslady
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Re: I'm Back. Sorry to say....
« Reply #4 on: Sep 18th, 2006, 1:26am » |
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Now...if I just knew what the question/comment was..before OP deleted it, maybe I'd know the answer........or not. 
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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TxBasslady
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Re: I'm Back. Sorry to say....
« Reply #5 on: Sep 18th, 2006, 1:29am » |
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on Sep 18th, 2006, 1:23am, Charlie wrote:
LMAO...Charlie  That looks like a tongue lashin'  or...a bitch slap...  LMAO
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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Batch
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Re: I'm Back. Sorry to say.... I
« Reply #6 on: Sep 18th, 2006, 1:56am » |
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Ask your quack about Neurontin (gabapentin). I'm on 900 mg/day TID and it's working wonders. How much O2 are you using? Prior to starting the gabapentin, my CH were hitting like yours about every 4 hours. If I caught them early as the shadows were forming, 5 to 7 l/m worked. As they got worse I upped the flow to 10 l/min. I recently went through the OUCH site on O2 and there's a study that indicated the really bad CH attacks took O2 flow rates of 15 l/min to abort.
I'm sure there's folks here on the site with a lot of good info on the use of 100% O2. For what it’s worth, I'm an old Navy fighter pilot with over 3400 hours flying fighters on and off aircraft carriers day and night. ALL of it was on 100% O2 and I know there were times when I was sucking it down at well over 15 l/min. Military pilots have been using 100% O2 for over 60 years and the flight surgeons have flown with us so I don’t think there’s any real risk in sucking down 100% O2 unless there are other major medical conditions present (your doc wouldn’t cut you an Rx if there were), and as long as you’re holding your non rebreather mask in place (NO HEAD STRAPS!!!).
As a former military pilot with a degree in chemistry, I know that hyperventilating on 100% O2 drives the PCO2 down and that elevates the blood pH from neutral or slightly acidic to basic and that pushes the body into respiratory alkalosis. My thinking is that respiratory alkalosis is primary mechanism that produces the vasoconstriction effect that eases or eliminates the CH pain. Getting the 100% O2 in sufficient quantity is key to aborting the CH.
In order to get the full effect of 100% O2, I make sure there are flapper valves on both sides of the non rebreather mask. Check your O2 mask. Nearly all come from the vendors and medical O2 suppliers, with only one flapper valve installed. Some masks come with no flapper valves on either side. This defeats the 100% O2 effect. If one or both sides are open, you’ll be sucking ambient air into the mask when you inhale and that means you’re getting less than 100% O2. I always ask for two masks and take the flapper (circular disk of thin clear silicone rubber with a small hole that goes over the center post on the mask) off one mask and install it on the other mask. In a pinch I've use a piece of soft vinyl or stiff paper cut in a disk shape larger than the valve seat and punch a small hole in the center so it can pushed onto the center post of the valve seat. I make sure I've got a good seal on the mask around my face. A good test of the mask seal involves placing it on my face with the O2 off and inhale without holding it in place. If I feel the mask suck into my face without holding it, I know I’ve got a good seal. If it falls off, I check the valves and the metal nose clip at the top of the mask.
I’m also a firm believer in hydrating so keep my fluid intake up to the point where I’m running to the john at frequent intervals prior to a CH attack. Ice water or iced coffee and a smoke (if you smoke) also add vasoconstrictors to my system. I’ve also found an ice cube wrapped in a paper towel and pressed lightly on the side of my face, top of the head on the cluster side, and back of the neck can offer some relief. If nothing else it gives me something to do while sucking down the O2 and it sure beats head banging, carpet munching, or doing the dance.
Hope you’re doing better. Hang in there. You're not alone.
V/R, Batch
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TxBasslady
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Re: I'm Back. Sorry to say....
« Reply #7 on: Sep 18th, 2006, 2:13am » |
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on Sep 18th, 2006, 12:18am, Miklos wrote:You could have hung in here with us when you were pain free, but you chose not to. Now you are back. And, we should feel what?
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Ya know what ? Please don't use the word "we", when you're feeling so opinionated....it kinda makes it seem like you're speaking for everyone here....and that kinda bothers me, since I don't feel the same way.
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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Carl_D
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Re: I'm Back. Sorry to say....
« Reply #8 on: Sep 18th, 2006, 2:27am » |
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OOoookay, I'm lost on this one.
Then again, I get lost easy when I have averaged an ahour a night for a week and have to be up for work at 5am.
Someone got went off on for not being here while in remission? Is that what I am getting?
What ever happened to all the love in the world?
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George_J
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Re: I'm Back. Sorry to say....
« Reply #9 on: Sep 18th, 2006, 2:41am » |
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on Sep 18th, 2006, 2:27am, Carl_D wrote:
Someone got went off on for not being here while in remission? Is that what I am getting? |
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I guess so. If that's the case, two-thirds of the episodics here (including me) need to have our a$$es kicked, because that's what most of us/them do--come when they're cycling, leave when they're not.
I decided to stick around this time to see if I could be of some help--but I found this place in 2000. So I've been awol for most of six years. Perhaps other episodics have chosen or will choose to stay after their cycles have ended, but that's up to them.
Just my 2 cents.
Best,
George
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
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And the feathers of birds
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It all comes to light in the sheer
Debonair.
(Ellen)
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BarbaraD
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Re: I'm Back. Sorry to say....
« Reply #10 on: Sep 18th, 2006, 7:14am » |
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It's just human nature to "avoid" people who are suffering when you're not.
I read this board every day, but sometimes don't post. But I'm chronic so I don't get a break in between. I don't know what I'd do if I did.
As a wise man said (and I can't believe I called him wise!) "Take what you need and leave the rest."
Hugs BD
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alchemy
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Re: I'm Back. Sorry to say....
« Reply #11 on: Sep 18th, 2006, 7:26am » |
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I have to agree with Barbara, it may be a tough call. i'm chronic and am here everyday getting and trying to give support. i fel if i ever got pf i would still be here trying to pay forward all the help and support i received. thats a personnal decision and wether someone sticks around or just comes when hurting doesn't matter. this place is to help those that are hurting. you don't punch a time clock here. i think jumping on people for just being here when in cycle goes against the meaning of here
just my dumb 2cents
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chewy
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Re: I'm Back. Sorry to say....
« Reply #12 on: Sep 18th, 2006, 7:54am » |
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Hard to comment with the original post removed.
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zwibbs/Scott
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Re: I'm Back. Sorry to say....
« Reply #13 on: Sep 18th, 2006, 10:23am » |
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My last cycle was in Oct/Nov./Jan---I stay around because of the tremendous help that people offered me during that cycle. At 52 I have had 11 cycles in my lifetime--some two months, some four months in duration. I always felt alone and isolated from " normal" people. Rather than go on and on....I can only say that Chronic sufferers are my heros, because I don't know how well I would handle that.
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alchemy
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Re: I'm Back. Sorry to say....
« Reply #14 on: Sep 18th, 2006, 10:43am » |
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Zwibby my friend thanks for the shout out to us chronics, i needed that today as i'm feeling really beat up. you helped lift me up a bit. thank god for this family
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rickyshot
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Re: I'm Back. Sorry to say....
« Reply #15 on: Sep 18th, 2006, 11:30am » |
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I can understand why someone would quit posting when PF for a long period of time. You almost feel you have no right being here feeling so good. I kept posting during my good months. Glad I did. But I don't judge. Here when you need us.
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Langa
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Re: I'm Back. Sorry to say....
« Reply #16 on: Sep 18th, 2006, 11:38am » |
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on Sep 18th, 2006, 11:30am, rickyshot wrote:| I can understand why someone would quit posting when PF for a long period of time. You almost feel you have no right being here feeling so good. I kept posting during my good months. Glad I did. But I don't judge. Here when you need us. |
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Ditto!
Hope the head eases up Alchemy...
Langa
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cootie
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Re: I'm Back. Sorry to say....
« Reply #17 on: Sep 19th, 2006, 12:29am » |
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Hey....I'm lost of what this is all about but who's the wobbie guy........just wonderin cuz the name (email) is a family name and in my same area kinda/sorta ?? Not been around much cuz of sum family delema's Pam (my dad)
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nani
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Re: I'm Back. Sorry to say....
« Reply #18 on: Sep 19th, 2006, 12:34am » |
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Miklos
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wobbie64
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Re: I'm Back. Sorry to say....
« Reply #19 on: Sep 19th, 2006, 12:45am » |
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[size=2][/size][color=Red][/color]THANK YOU...I guess I let one person speak for many. I should have known better. I appologize to the rest , especially after reading all the posts since his. Thank you again. Lets just say, when I am in a cycle, I am not thinking with the clearest of mind, and the longest of fuses.
I am runnin O2 at 12-15 lpm, they have me on antelol100mg bid, verapimil 240 tid, just finished a medrol dose pack. During the Dose pack, only a handful of attacks, the attacks have started backfast and furious again the last 2 days. back to the 4 hr intervals.
Fired my Dr Seuss Neurologist today and am going to go back to the headache center at the Cleveland Clinic Thursday. My Original Dr there was a great Dr. Glen Salomon. Bad thing was he moved to Chicago couple of yrs ago. I spoke to him today, he remembered me, and put in a call for me. I guess sending Christmas cards every yr pays off.. lol Actually, he and I have the same cluster style. Hard to control. He always said I was his most challenging patient besides himself. Well, he recommended his successor at the Clinic. Robt Kunkel. I never have heard of him, but if Glen says he is good, he must be.
I will ask him about the Neurontin suggested. Thanks Batch......Also like to thank everyone else for replying.....
so positively!!!!!!!!!!!!!!!!!!!!!
Ill give myself a extra wall smack during the next waltz for profiling. profiling is wrong....talk to you all soon Robb
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TxBasslady
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Re: I'm Back. Sorry to say....
« Reply #20 on: Sep 19th, 2006, 1:30am » |
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My first instinct is to say that your Verapamil dose needs to be increased....but, I've never taken it. Just read a ton about it here over the past 3 years.
The antelol...I don't have a clue what that is...LOL...sorry.
I use 02....and nothing else. I assume you're using a non-rebreather mask? Check out the Clustermasx...designed and sold by a CH'er in the UK.
It makes alot of difference in the way the 02 works.
...Wall smacking is not allowed.... So stop it
Best of luck to you, Robb....let us know what your new doc says...
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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unsolved1
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Re: I'm Back. Sorry to say....
« Reply #21 on: Sep 19th, 2006, 3:38am » |
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Nice contribution Miklos Looks like you're the one that got bitch slapped !
UNsolved 
PS. Actually, I originally thought this thread was posted by WOOBIE. Haven't seen much of her (or Ramons) posts. Anyone know where they are or how they're doing ?
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Shaz
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Re: I'm Back. Sorry to say....
« Reply #22 on: Sep 19th, 2006, 5:35am » |
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Just to put my two penneth in.
I am an episodic and have been pain free for a year now. Still come onto this site very regularly and love to read the posts and offer support when I can. I do not post very often, cos to be honest I can never think of anything interesting for you all to read about, so probably a lot of people dont know me out there, but I am still here wanting to be part of it.
There are probably a lot of people out there who dont post. Not because they dont want to contribute but because they cant think of anything to write about.
All I know that this is a great place to be. When there is no pain it is warm and caring and when you are in pain it is a life saver. Everyone out there is important.
Shaz 
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Peppermint
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Re: I'm Back. Sorry to say....
« Reply #23 on: Sep 19th, 2006, 2:13pm » |
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on Sep 19th, 2006, 3:38am, unsolved1 wrote:Nice contribution Miklos Looks like you're the one that got bitch slapped !
UNsolved
PS. Actually, I originally thought this thread was posted by WOOBIE. Haven't seen much of her (or Ramons) posts. Anyone know where they are or how they're doing ? |
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Hi there,
Yea, Woobie posted a short while ago. Ramon's just started his cycle too. 
PFDANs,
Pep
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TxBasslady
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Re: I'm Back. Sorry to say....
« Reply #24 on: Sep 19th, 2006, 2:31pm » |
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Michael,
They're having puter problems...
Tina sent me a pm a few days ago....but seems they can't stay online long...that's when she said Ramon was in cycle.
I know they'll be back asap....
Jean
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How lucky I am... to have known someone who was so hard to say goodbye too.
Take a kid fishin
www.takemefishin.org
I adopted a Vietnam POW/MIA from El Paso, Texas!
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