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what worked for me, hope it helps someone. (Read 5776 times)
evtish
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what worked for me, hope it helps someone.
May 18th, 2010 at 10:10am
 
First off, I don't get them anymore, they just went away about 10 yrs ago at age 35 after 20 yrs.  Suffered like a bastard from age 16-35 though, taking final exams in college or being in a meeting at work when I got one was always a fun time.  I thought i had a brain tumor in high school, you all know the drill, had an MRI/brain scan and diagnosed with clusters.  Classic symptoms, never took any drugs until about 30. Finally went to John Grahm headache center and was just really happy that there were people out there that actually understood what it was like.  Anyway, here's what I used to help me get off the peak:  take Excedrin (later found out it has caffiene which can help); go to darkest, quietest place I could find, get as much air as possible (cool air); breath deeply inhaling large breaths; try to purposefully "slow down" my thoughts and beta waves; try to make my body completely limp.  If I could do this I could get off a peak in ~10-15 minutes and be functional.  You guys already probably know as this bc of this excellent message board, but that kind of worked a little for me in a trial and error way.
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Linda_Howell
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Re: what worked for me, hope it helps someone.
Reply #1 - May 18th, 2010 at 10:37am
 
Sorry, Excedrin might be good for a normal headache...but it doesn't work for any of us.  Just rots a hole in the stomach.

Have you read enough around here to have heard about high-flow oxygen???  Link is to the left in yellow.

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George
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Re: what worked for me, hope it helps someone.
Reply #2 - May 18th, 2010 at 10:49am
 
Other than the Excedrin, your approach sounds familiar.

Even though I now use oxygen as an abortive, I still go to a dark, quiet place where I can concentrate on reducing my reaction to an attack, slow my heart rate, take deep, slow breaths, hyperventilate, slow my thoughts, and relax as much as possible.  I also concentrate my attention away from the "focal point" of the pain, to an adjacent area.  Doing all this seems to produce a mild trance state where the pain still exists, but it exists at some remove. 

It was part of the "coping strategy" I used to endure an attack for many years when I used no medications.  It still helps.

I will add, though, that learning to do this was one of the hardest things I've ever done.  It's contrary to every instinct.

I think many of us who've had these for a long time learn to do something similar.

Glad to hear you've managed to leave them behind for the past ten years.  Posts like that give everyone hope, and hope is most welcome.

Best wishes,

George
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Re: what worked for me, hope it helps someone.
Reply #3 - May 18th, 2010 at 12:16pm
 
Linda_Howell wrote on May 18th, 2010 at 10:37am:
Sorry, Excedrin might be good for a normal headache...but it doesn't work for any of us.  Just rots a hole in the stomach.





It bothers me that a moderator would speak for all of us.   For some of us pain relievers do work.  I started w/ aspirin. Sometimes lots of em.  Moved to BC headache powders.  So many, sometimes, my teeth were numb.   After those lost their effectiveness, ibuprofen worked.  Sometimes 2... sometimes more.   

There were times I took to much.  I agree it's not the best approach.
There was long stretch were i could pop 3 ibuprofen, and i knew it was gonna go away. 

  i got scared when I read on this site that pain relievers "dont work".
... almost cult like.  I became "afraid" that I would not get any relief, from a normal pain reliever. 

Rant off.... i had my first beast in over 11 months last night... i am kinda in a mood..    They do work for some of us though.  nuff said

 
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Re: what worked for me, hope it helps someone.
Reply #4 - May 18th, 2010 at 12:45pm
 
BC Powder and Excedrin are great for regular head aches but the have NEVER worked for my CH. I would be very afraid to take more than what the label says because this can cause internal bleeding. I personally know someone who almost bled to death because  he was taking too much BC on a daily basis. I find it hard to believe anyone that has been medically diagnosed with CH would not be given any type of perscription medication to treat the CH. Just because something is sold without a script does not mean it can't be deadly when used incorrectly.

Please do not attack the moderators on this board. They give so much selflessly to help others.  How much of your own personal time, effort and money have you devoted to helping others with CH??
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Re: what worked for me, hope it helps someone.
Reply #5 - May 18th, 2010 at 12:58pm
 
JHK07 wrote on May 18th, 2010 at 12:16pm:
Linda_Howell wrote on May 18th, 2010 at 10:37am:
Sorry, Excedrin might be good for a normal headache...but it doesn't work for any of us.  Just rots a hole in the stomach.





It bothers me that a moderator would speak for all of us.   For some of us pain relievers do work.  I started w/ aspirin. Sometimes lots of em.  Moved to BC headache powders.  So many, sometimes, my teeth were numb.   After those lost their effectiveness, ibuprofen worked.  Sometimes 2... sometimes more.   

There were times I took to much.  I agree it's not the best approach.
There was long stretch were i could pop 3 ibuprofen, and i knew it was gonna go away. 

  i got scared when I read on this site that pain relievers "dont work".
... almost cult like.  I became "afraid" that I would not get any relief, from a normal pain reliever. 

Rant off.... i had my first beast in over 11 months last night... i am kinda in a mood..    They do work for some of us though.  nuff said

 

      Couldn't find one mention about oxygen as an abortive in any of your twenty six posts.
       Maybe you should read a little and get educated.

             Potter

Don't fuck with Linda.
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« Last Edit: May 18th, 2010 at 12:59pm by Potter »  
 
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Re: what worked for me, hope it helps someone.
Reply #6 - May 18th, 2010 at 1:25pm
 
JHK07 wrote on May 18th, 2010 at 12:16pm:
I started w/ aspirin. Sometimes lots of em.  Moved to BC headache powders.  So many, sometimes, my teeth were numb.   After those lost their effectiveness, ibuprofen worked.  Sometimes 2... sometimes more.   

There were times I took to much.  I agree it's not the best approach.
There was long stretch were i could pop 3 ibuprofen, and i knew it was gonna go away. 

  i got scared when I read on this site that pain relievers "dont work".
... almost cult like.  I became "afraid" that I would not get any relief, from a normal pain reliever. 

This kind of thing will land you in an ER with black stool and puking blood. Or worse.

So either heed or don't. That's what's so wonderful about being a human. You have choices.
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"I have been asked if I have changed in these past 25 years. No, I am the same. Only more so."  --Ayn Rand
 
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Re: what worked for me, hope it helps someone.
Reply #7 - May 18th, 2010 at 1:50pm
 
JHK07 wrote on May 18th, 2010 at 12:16pm:
Linda_Howell wrote on May 18th, 2010 at 10:37am:
Sorry, Excedrin might be good for a normal headache...but it doesn't work for any of us.  Just rots a hole in the stomach.





It bothers me that a moderator would speak for all of us.   For some of us pain relievers do work.  I started w/ aspirin. Sometimes lots of em.  Moved to BC headache powders.  So many, sometimes, my teeth were numb.   After those lost their effectiveness, ibuprofen worked.  Sometimes 2... sometimes more.   

There were times I took to much.  I agree it's not the best approach.
There was long stretch were i could pop 3 ibuprofen, and i knew it was gonna go away. 

  i got scared when I read on this site that pain relievers "dont work".
... almost cult like.  I became "afraid" that I would not get any relief, from a normal pain reliever. 

Rant off.... i had my first beast in over 11 months last night... i am kinda in a mood..    They do work for some of us though.  nuff said



So, when you say that over-the-counter pain relievers, are you saying that after about 45 minutes to an hour you get some relief? If so, most of us would just say that that hit simply subsided as they do. Mine last for about about 45 minutes to an hour or two. Better off going after a red bull or some other form of energy drink for the caffeine than rotting your gut with heavy doses of aspirin or other pain relievers.

BTW - Linda's spent the time here to be able to speak for a lot of others - back off her.
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Re: what worked for me, hope it helps someone.
Reply #8 - May 18th, 2010 at 1:54pm
 
Potter wrote on May 18th, 2010 at 12:58pm:
JHK07 wrote on May 18th, 2010 at 12:16pm:
Linda_Howell wrote on May 18th, 2010 at 10:37am:
Sorry, Excedrin might be good for a normal headache...but it doesn't work for any of us.  Just rots a hole in the stomach.





It bothers me that a moderator would speak for all of us.   For some of us pain relievers do work.  I started w/ aspirin. Sometimes lots of em.  Moved to BC headache powders.  So many, sometimes, my teeth were numb.   After those lost their effectiveness, ibuprofen worked.  Sometimes 2... sometimes more.   

There were times I took to much.  I agree it's not the best approach.
There was long stretch were i could pop 3 ibuprofen, and i knew it was gonna go away. 

  i got scared when I read on this site that pain relievers "dont work".
... almost cult like.  I became "afraid" that I would not get any relief, from a normal pain reliever. 

Rant off.... i had my first beast in over 11 months last night... i am kinda in a mood..    They do work for some of us though.  nuff said

 

      Couldn't find one mention about oxygen as an abortive in any of your twenty six posts.
       Maybe you should read a little and get educated.

             Potter

Don't fuck with Linda.



I am not ducking w/ Linda.  Her words need to be chosen more carefully.  I am not mad at  her... I could careless that it was wrote.
But people come her for information/ support.   We don't need to feed them false information or hope. 

Part of the battle w/ these things is finding a way to cope....
they read my post.... "Yea I beat the beast last nite,  only 2 aspirin. gone in 15 minutes."

They read someone elses post...." yea, i killed the beast last nite..  i had 2 trex shots, 4 red bulls,... etc.


Linda using that statement is like me saying nobody likes you.   I speak for everyone.... ya know.


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Re: what worked for me, hope it helps someone.
Reply #9 - May 18th, 2010 at 2:19pm
 
Not to jump into the fray but......

excedrin is usually 65mg caffeine, 250 mg aceptamenaphin and 250 mg aspirin.  There are different kinds but these are extra strength and migraine formulas.

When I took them, 3 would do the trick if caught early enough.  That is 195 mg of caffeine!  Boom!  Usually aspirin and acetapmenaophen (spelling) didn't help, so finally I just started taking the caffeine.  Either coffee, soda, tea, or nodoz/vivarin.  I'm not a redbull'er but why not ey?

So I don't advocate excedrin anymore, I don't need it and the extras in it could wear on me after 2 months of big kippers.  But there were times when I was trying to figure stuff out that a Tylenol sinus stopped my pain.  Next cycle it didn't work so I gave that up.  Always hard to say because of the duration of our hits.

Anywho, just thinkin' out loud.  Oh and be nice to moderators AND everyone else too.  We're all in this crappy ship together. Cheesy All right, not always crappy Tongue

--Shaggy
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Re: what worked for me, hope it helps someone.
Reply #10 - May 18th, 2010 at 2:30pm
 
JHK07 wrote on May 18th, 2010 at 1:54pm:
But people come her(e) for information/ support.   We don't need to feed them false information or hope. 


So why don't you follow your own advice??


                 Smiley



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AlienSpaceGuy believes only in scientifically sound methods.

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Re: what worked for me, hope it helps someone.
Reply #11 - May 18th, 2010 at 2:37pm
 
AlienSpaceGuy wrote on May 18th, 2010 at 2:30pm:
JHK07 wrote on May 18th, 2010 at 1:54pm:
But people come her(e) for information/ support.   We don't need to feed them false information or hope. 


So why don't you follow your own advice??


                 Smiley




I don't understand what you mean. 
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Re: what worked for me, hope it helps someone.
Reply #12 - May 18th, 2010 at 3:06pm
 
JHK07 wrote on May 18th, 2010 at 2:37pm:
AlienSpaceGuy wrote on May 18th, 2010 at 2:30pm:
JHK07 wrote on May 18th, 2010 at 1:54pm:
But people come her(e) for information/ support.   We don't need to feed them false information or hope. 


So why don't you follow your own advice??


                 Smiley




I don't understand what you mean. 


I think you need to know that there are many things that are true for MOST people with CH:

1.  They SHOULD have tried O2 first.  Non-rebreather at 15 lpm+   May not work, but they SHOULD try it first.

2.  Typical headaches meds don't work.

3.  Pain killers don't work


Yes, some people claim to be exceptions, but for the most part these things are true. 

This is passing off useful information.  Suggesting anything to the contrary is careless.  Linda isn't speaking for all of us, just most of us.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you.  No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
 
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Reply #13 - May 18th, 2010 at 4:02pm
 
FramCire wrote on May 18th, 2010 at 3:06pm:
JHK07 wrote on May 18th, 2010 at 2:37pm:
AlienSpaceGuy wrote on May 18th, 2010 at 2:30pm:
JHK07 wrote on May 18th, 2010 at 1:54pm:
But people come her(e) for information/ support.   We don't need to feed them false information or hope. 


So why don't you follow your own advice??


                 Smiley




I don't understand what you mean. 


I think you need to know that there are many things that are true for MOST people with CH:

1.  They SHOULD have tried O2 first.  Non-rebreather at 15 lpm+   May not work, but they SHOULD try it first.

2.  Typical headaches meds don't work.

3.  Pain killers don't work


Yes, some people claim to be exceptions, but for the most part these things are true. 

This is passing off useful information.  Suggesting anything to the contrary is careless.  Linda isn't speaking for all of us, just most of us.

I think you need to know that there are a few things that are true for a FEW people with CH:

1.  They SHOULD  try O2.  Non-rebreather at 15 lpm+   May not work, but they SHOULD try it.

2.  Typical headaches meds sometimes work.

3.  Pain killers sometimes work


 
I read a lot on here. I agree that most people don't respond to pain relievers.  also agree that taken in excess they are not good for you.
But Newbies Don't Need to come One Here And Read One Sided Stuff.
They can read my post, and find a guy where a pain reliever helped; and just maybe they wont feel so bad and just maybe 3 ibeprophen will work that night for them.     Till he/she can get hooked up on O2.... or something else.
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Re: what worked for me, hope it helps someone.
Reply #14 - May 18th, 2010 at 4:13pm
 
JHK07 wrote on May 18th, 2010 at 4:02pm:
FramCire wrote on May 18th, 2010 at 3:06pm:
JHK07 wrote on May 18th, 2010 at 2:37pm:
AlienSpaceGuy wrote on May 18th, 2010 at 2:30pm:
JHK07 wrote on May 18th, 2010 at 1:54pm:
But people come her(e) for information/ support.   We don't need to feed them false information or hope. 


So why don't you follow your own advice??


                 Smiley




I don't understand what you mean. 


I think you need to know that there are many things that are true for MOST people with CH:

1.  They SHOULD have tried O2 first.  Non-rebreather at 15 lpm+   May not work, but they SHOULD try it first.

2.  Typical headaches meds don't work.

3.  Pain killers don't work


Yes, some people claim to be exceptions, but for the most part these things are true. 

This is passing off useful information.  Suggesting anything to the contrary is careless.  Linda isn't speaking for all of us, just most of us.

I think you need to know that there are a few things that are true for a FEW people with CH:

1.  They SHOULD  try O2.  Non-rebreather at 15 lpm+   May not work, but they SHOULD try it.

2.  Typical headaches meds sometimes work.

3.  Pain killers sometimes work


 
I read a lot on here. I agree that most people don't respond to pain relievers.  also agree that taken in excess they are not good for you.
But Newbies Don't Need to come One Here And Read One Sided Stuff.
They can read my post, and find a guy where a pain reliever helped; and just maybe they wont feel so bad and just maybe 3 ibeprophen will work that night for them.     Till he/she can get hooked up on O2.... or something else.


I don't know why you want to start something, but please stop.  You COULD have taken my assertion that some people have claimed otherwise and agreed and instead you have to be antagonistic.

While there are a few who claim to have relief from headache meds and/or pain killers, it is a SMALL sample of people.  To suggest it as a line of defense is somewhat careless until other ways are exhausted.

Pain meds and headache meds are more likely to cause other problems than they are to help with CH.  So while you think it is important for every possible remedy to be mentioned, most here try to emphasize methods that actually are more likely to work than not.

Otherwise, we would be touting grape jelly and bananas rubbed on our temples and tin foil hats.
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you.  No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
 
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Re: what worked for me, hope it helps someone.
Reply #15 - May 18th, 2010 at 4:35pm
 
Stop hating on tin foil hats.
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Re: what worked for me, hope it helps someone.
Reply #16 - May 18th, 2010 at 6:00pm
 
Brew wrote on May 18th, 2010 at 4:35pm:
Stop hating on tin foil hats.


I hear some people have tried beer as a feminine hygiene product as well, with reported success (the person has not had a CH since).

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you.  No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
 
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Re: what worked for me, hope it helps someone.
Reply #17 - May 18th, 2010 at 7:08pm
 
Quote:
It bothers me that a moderator would speak for all of us.   For some of us pain relievers do work.  I started w/ aspirin. Sometimes lots of em.  Moved to BC headache powders.  So many, sometimes, my teeth were numb.   After those lost their effectiveness, ibuprofen worked.  Sometimes 2... sometimes more.   

There were times I took to much.  I agree it's not the best approach.
There was long stretch were i could pop 3 ibuprofen, and i knew it was gonna go away. 

  i got scared when I read on this site that pain relievers "dont work".
... almost cult like.  I became "afraid" that I would not get any relief, from a normal pain reliever. 



Oh where or where  to start. Roll Eyes

First of all I DO NOT speak for everyone here.  Moderator or not, after 23 yrs. chronic and more than 11 yrs. here, as well as being here day in and day out listening to others....I have a tendancy to know some things.  Excedrin, aspirin, motrin, advil, etc. etc. etc. will not work on CH.  If it does...I may suggest one find a physician who knows what may be the cause of YOUR headaches.

No cult here.   Period.  Only a lot of us who have been through the mill, and have surfaced with a working explanation of this condition, a working idea of how it is treated, AND a working idea of what is BS.

Now you go and have a very nice day, ya hear.


Oh.... Do not PM me again.
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Hurt people.....hurt people.   Think about it.
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Re: what worked for me, hope it helps someone.
Reply #18 - May 18th, 2010 at 7:40pm
 
I wanted to respond Linda......but I'm a moderator......I'm no longer sure what that means.... Roll Eyes

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Re: what worked for me, hope it helps someone.
Reply #19 - May 18th, 2010 at 8:00pm
 
evitish - Despite the thread hi-jacking that took place here, hope you will read more about the oxygen info we have here. Although you've been CH-free for a long time, would be some good info just in case. Most people here can abort a CH much quicker than any pain-relievers, without side affects!

Thanks for the post and welcome to the nut-house.
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Re: what worked for me, hope it helps someone.
Reply #20 - May 18th, 2010 at 8:28pm
 
TFH!    TFH!    TFH!    TFH!    TFH!    TFH!    Smiley
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« Last Edit: May 18th, 2010 at 8:29pm by Melissa »  

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Re: what worked for me, hope it helps someone.
Reply #21 - May 19th, 2010 at 8:27am
 
Linda_Howell wrote on May 18th, 2010 at 7:08pm:
Quote:
It bothers me that a moderator would speak for all of us.   For some of us pain relievers do work.  I started w/ aspirin. Sometimes lots of em.  Moved to BC headache powders.  So many, sometimes, my teeth were numb.   After those lost their effectiveness, ibuprofen worked.  Sometimes 2... sometimes more.   

There were times I took to much.  I agree it's not the best approach.
There was long stretch were i could pop 3 ibuprofen, and i knew it was gonna go away. 

  i got scared when I read on this site that pain relievers "dont work".
... almost cult like.  I became "afraid" that I would not get any relief, from a normal pain reliever. 



Oh where or where  to start. Roll Eyes

First of all I DO NOT speak for everyone here.  Moderator or not, after 23 yrs. chronic and more than 11 yrs. here, as well as being here day in and day out listening to others....I have a tendancy to know some things.  Excedrin, aspirin, motrin, advil, etc. etc. etc. will not work on CH.  If it does...I may suggest one find a physician who knows what may be the cause of YOUR headaches.

No cult here.   Period.  Only a lot of us who have been through the mill, and have surfaced with a working explanation of this condition, a working idea of how it is treated, AND a working idea of what is BS.

Now you go and have a very nice day, ya hear.


Oh.... Do not PM me again.



I was wrong about you.

PS....   Excedrin, aspirin, motrin, can work.  Maybe it did not work for you.  It did work for me.  It quit working for me.  While not healthy in vast quantities, I might help someone in a pinch.  11 years here you should know better than to say "will not work".   silly.

Yes groupies.... Yesterday was nothing, and you rode my ass....
Now have fun............
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Re: what worked for me, hope it helps someone.
Reply #22 - May 19th, 2010 at 10:06am
 
JHK07 wrote on May 19th, 2010 at 8:27am:
I was wrong about you.

PS....   Excedrin, aspirin, motrin, can work.  Maybe it did not work for you.  It did work for me.  It quit working for me.  While not healthy in vast quantities, I might help someone in a pinch.  11 years here you should know better than to say "will not work".   silly.

Yes groupies.... Yesterday was nothing, and you rode my ass....
Now have fun............


Do I need a jackass to English dictionary or am I misreading this?
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You've overstayed your welcome since the day we met but it doesn't seem to matter to you.  No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
 
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Guiseppi
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San Diego to Florida 05-16-2011


Posts: 12063
SAN DIEGO, CALIFORNIA USA
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Re: what worked for me, hope it helps someone.
Reply #23 - May 19th, 2010 at 10:32am
 
No Fram you're not misreading him. He will not back down from his statements that all newbies should try large amounts of OTC's...in case they are one of the lucky 2-3% it works for.

So Linda was wrong to suggest they try something like say 02..with a better then 70% success rate....and none of the internal organ damage that the OTC's cause....and as a moderator she probably shouldn't have posted at all.

(Disclaimer....I AM a moderator but am expressing only my own opinion. No other person or persons opinions are expressed or impied in this statement, your mileage may vary, some settling of contents naturally occurs during shipping and handling.)

Joe...(whose father recently spent a week in the hospital trying to recover from the internal bleeding in his stomach and bladder directly caused by excessive use of Ibuprofen)
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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Dallas Denny 62
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Semper Fi !!!!


Posts: 295
Island Bayou Mushroom Farm
Gender: male
Re: what worked for me, hope it helps someone.
Reply #24 - May 19th, 2010 at 10:59am
 
FramCire wrote on May 19th, 2010 at 10:06am:
JHK07 wrote on May 19th, 2010 at 8:27am:
I was wrong about you.

PS....   Excedrin, aspirin, motrin, can work.  Maybe it did not work for you.  It did work for me.  It quit working for me.  While not healthy in vast quantities, I might help someone in a pinch.  11 years here you should know better than to say "will not work".   silly.

Yes groupies.... Yesterday was nothing, and you rode my ass....
Now have fun............


Do I need a jackass to English dictionary or am I misreading this?


Well, I'm NOT a moderator but I didn't respond to this post cause I didn't WANT a moderator to have to tell me to SHUT UP!!!    Hmmm....guess maybe I am mellowing with old age....

DD
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I am lost and have gone to find myself....if you should see me before I get back....please ask me to wait until I return!!
 
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