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Topic: A Headache Story - Part 4 (Read 5523 times) |
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Ace
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A Headache Story - Part 4
« on: Jan 25th, 2008, 11:26am » |
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In retrospect, people with cluster headaches should be warned on the dangers of repeated use of steroids. Prenisone, Solumedrol, Dexamethasone, etc. will all make you feel better for 2 to 3 days but you are running the risk of the prednisone directly acting with what is causing your headaches.... your immune system and the presence of inflamation.
Prednisone is almost diagnostic in that it first reduces inflammation. I have been told that Prednisone does too much to your system to be diagnostic. Well if you do your research and realize how prednisone works with the first dose or two. It reduces inflamation and shuts down your HPA Axis.
Then it affects both serotonin and dopamine but the effects of this doesn't happen for at least a few days. Just like any of the SSRIs take at least a few days to build up in your system before they are effective.
_____________________________
The rest and end of the story.......
So its mid 2002. I tried Prednisone one more try and almost had a repeat of what I just described.
I tried to return to work but the morning headaches returned. I attempted to go to work 3 times that year with limited success.
Fast forward to 2005. I had figured out how to get on Prednisone without the serious reaction. I was on 400mg Ultram, 6mg Adivan, 30mg Prednisone. I was hoping that Prednisone might fix some of the tissue damage I sustained from the attack of 2001.
I worked all year in 2005. FINALLY, I felt a little bit normal. I had great colleagues and the project I was leading was challenging...it gave me something to do besides suffering. Then it happened...
Before I tell you what happened in 2005 let me back up bit an note a few things.
I basically had problems with steroids from the start. I initially had problems just tapering off of it. Then I had problems getting back on it. It was screwing with me both ways. (getting on it and iff if it)
The first taper, I jumped from 30mg to 20mg. I felt fine for the first 24 hours. I was in a bar drinking, smoking, throwing darts...and all of a sudden my tongue swelled up and filled the whole inside of my mouth. If I tried to open my mouth my tongue would start to slide back toward my airway. My girlfriend is freakin out and 60 seconds later I shrunk to normal size and I was fine.
Later that night, after I went home. I tried to go to bed and all of a sudden my head started ringing and it felt like either someone was pinching the base of my skull with channel locks or their was an increase of fluid in my head. That's what I felt like and off to the ER I go.
At the ER my white cout was raised and it was dismissed as an effect of prednisone. I was given Toradol and Prednisone w/o my knowledge and I almost had anaphylaxis. The stupid doctor just focussed on my anxiety and Dx'd me with anxiety attacks.
This feeling of my skull being squeezed would not return until mid 2005. I was on 30mg of Prednisone then and I was uncomfortable taking this daily dose. It was screwing with my blood sugar, affecting my sleep patterns, etc.
So I tried to go every other day. Three days into that, my squeezing episode return. All I was doing at the time was smoking a cig, drinking coffee, and surfing the net.
So what happened?
One of the major medical discoveries certainly of my life and maybe others. I had a "reverse allergy"
I was allergic to the cigarettes and the Ultram. The Ultram was a type 1 immune response and cigarettes initiated a type 3 immune response. More importantly, there were no blood markers. I went to the ER just to get bloodwork.
What happened to me in general is the prednisone raised my body's allergic response by several orders of magnitude. I was allergic to Ultram. I was allergic to cogarettes. I was allergic to alcohol. I jusr couldn't tell until Prednisone created this immune rebound effect.
Remember, per emedicine and a lot of authorities, The only commonality for cluster sufferers is the use alcohol and tobacco. It was these substances that were causing my headaches and it was my immune system that was the primary system irritating the nerves in my head.
I can say with 100% confidence that if I had never had a drink, never smoked a cigarette, never took a pill, I wouldn't have these headaches.
I say there is a blood marker for this condition but as of yet I haven;t found it other than a raised white count (not from steroids).
Yes, I am saying my cluster headaches are caused not exactly by the cigarettes or alcohol but by the immune response to these substances.
to finish this story, in Jan 2006 I was admitted to the hospital and pulled off all medication...and I couldn't smoke. I had a severe headache from the withdrawal but then I was fine. I was put on Zyprexa because Prednisone made me schizophrenic. I highly recommend Zyprexa to anyone as it lowers the "ringing phenomenon" to almost 0 and I didn't have a headache in all of 2006...and I restarted smoking.
Since then I have applied for disability and was approved. I sit at home, alone and forgotten about. The mental side of my disease prevents me from working (thanks to Prednisone)
I had another shoulder surgery in 2007 in Jan. It made me seek and lots of headaches. 3 months later I had to go in and have gallbladder surgery. Does any of this ring a bell. The first shoulder surgery was in January and 3 months later I was in the hospital for something.
It's now 2008
Noone called me on Christmas even though I called 5 people and left voicemails wishing them Happy X-mas. It takes five minutes. Not even my family called. Couple that depression with the depression from having this disease and I was ready ro commit suicide. Probably the closest I ever come. I have pulled out of it for the most part and after reading everyone's post I am going to yield some information and clear up some misunderstandings.
____________________________________________
Cluster migraines are potentiated by alcohol, cigarettes, and opiates. The Alcohol is special in that there is an innate allergy (immune response) to it and it also raises IgG and IgE sensitivitiy to other substances.
In lamens terms, I lowers your threshold to tolerate external stimuli (allergens like cigarettes)
For the smokers, it takes a few years for the immune system to make your Occipital nerve and the tissue around it sclerotic and fibrotic. Well we can say if we stop these behaviors the headaches will go away. The people that don't smoke would have issue with this stance. What about them, they don't smoke and they get headaches.
The answer to that is I don't know. It may be as simple as you (non-smokers) have other allergies that can potentiate the headache. Or there may be a sub-type of cluster sufferers that have a whole different set of triggers and pathology.
I do know one thing. Once the immune system is setup to inflame these nerves and the nerves have had a little slcerosis or other damage to them all you can do at this point is stay away from the triggers and attemp prophylaxis. Physically, the headache system has already been setup and nothing short of replacing your immune system via stem cells and cutting out the occipital and trigeminal nerves...take the drugs. You can't unring a bell.
I am mostly talking to those who are reactive to Alcohol or Smokers. (Just because I know for a fact what I am talking about with these folks)
So here it goes,
___________________________________________
We have the most painful headache/disorder and the word needs to be spread.
There had been talk about some nitroglycerin and headaches...Researchers use nitroglycerin to initiate headaches to test the efficacy of their drugs. Headaches and nitro go hand in hand. There is one condition and for the life of me I can't remeber it but the treatment was placing a nitro patch on the anus.
Why the anus? Apparently the anal pathway is almost immediate for entering somthing into the blood steam.
Why is the headache always (or usually) in the morning?
In a word - Blood Pressure. As you wake your blood pressure goes up ciculating thicker (dehydrated) blood throughout the body and the occippital and trigrminsl nerve. The blood hits the nerve where it is either damaged (like mine) or sensitized nerves (like others with trigeminal symptoms).
How do you stop cycling?
That is one thing I have not been able to figure out. I know itls a metabolic trigger but I don't know wht it is.
Stopping within cycle-
It will be different for every person. It will be the same for every person. I am only familiar with tha Alcohol and cigarette cluster headaches per emedicine.com. You stop it by quitting drinking the smoking. Getting a few cervical injections. And go easy (but don't quit) the coffee.
I probably know more I just can't think of anything right now.
____________________
SIDENOTE:
One interesting fact is that in my battle to stop cluster headaches and my orher problems I became allergic to a lot of drugs. My mother, who has been called one of the worst schizophrenics around, also had the same allergies and deveoped some of them at the same age as me. She does not have headaches.
For some reason unknown to me I loooked up the first ailment I ever had which was an ear infection.I had a severe reaction to the sulfa in the medicine given to me. It's called Stevens-Johnson-Syndrome So I looked that up on emedicine.com. The going theory was that there was a defect in the CYP-450 system which is the system of enzymes that metabolize the drugs we take.
EVERY drug that made my mother psychotic and made my headaches worse or more frequent matched one for one and fell under one enzyme: 2D6.
I also noted that when I was really sick if I ate a high protein dinner I felt like a million bucks the next day.
Ergo: The enzymes in the liver depend on the protein in our diet.
__________________________
So that's it. That's my story. I would love to hear from anyone that has had a similar experiences.
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My Head Hurts Too
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George_J
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Re: A Headache Story - Part 4
« Reply #1 on: Jan 25th, 2008, 11:29am » |
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on Jan 25th, 2008, 11:26am, Ace_Sterling wrote:In retrospect, people with cluster headaches should be warned on the dangers of repeated use of steroids. Prenisone, Solumedrol, Dexamethasone, etc. will all make you feel better for 2 to 3 days but you are running the risk of the prednisone directly acting with what is causing your headaches.... your immune system and the presence of inflamation.
Prednisone is almost diagnostic in that it first reduces inflammation. I have been told that Prednisone does too much to your system to be diagnostic. Well if you do your research and realize how prednisone works with the first dose or two. It reduces inflamation and shuts down your HPA Axis.
Then it affects both serotonin and dopamine but the effects of this doesn't happen for at least a few days. Just like any of the SSRIs take at least a few days to build up in your system before they are effective.
_____________________________
The rest and end of the story.......
So its mid 2002. I tried Prednisone one more try and almost had a repeat of what I just described.
I tried to return to work but the morning headaches returned. I attempted to go to work 3 times that year with limited success.
Fast forward to 2005. I had figured out how to get on Prednisone without the serious reaction. I was on 400mg Ultram, 6mg Adivan, 30mg Prednisone. I was hoping that Prednisone might fix some of the tissue damage I sustained from the attack of 2001.
I worked all year in 2005. FINALLY, I felt a little bit normal. I had great colleagues and the project I was leading was challenging...it gave me something to do besides suffering. Then it happened...
Before I tell you what happened in 2005 let me back up bit an note a few things.
I basically had problems with steroids from the start. I initially had problems just tapering off of it. Then I had problems getting back on it. It was screwing with me both ways. (getting on it and iff if it)
The first taper, I jumped from 30mg to 20mg. I felt fine for the first 24 hours. I was in a bar drinking, smoking, throwing darts...and all of a sudden my tongue swelled up and filled the whole inside of my mouth. If I tried to open my mouth my tongue would start to slide back toward my airway. My girlfriend is freakin out and 60 seconds later I shrunk to normal size and I was fine.
Later that night, after I went home. I tried to go to bed and all of a sudden my head started ringing and it felt like either someone was pinching the base of my skull with channel locks or their was an increase of fluid in my head. That's what I felt like and off to the ER I go.
At the ER my white cout was raised and it was dismissed as an effect of prednisone. I was given Toradol and Prednisone w/o my knowledge and I almost had anaphylaxis. The stupid doctor just focussed on my anxiety and Dx'd me with anxiety attacks.
This feeling of my skull being squeezed would not return until mid 2005. I was on 30mg of Prednisone then and I was uncomfortable taking this daily dose. It was screwing with my blood sugar, affecting my sleep patterns, etc.
So I tried to go every other day. Three days into that, my squeezing episode return. All I was doing at the time was smoking a cig, drinking coffee, and surfing the net.
So what happened?
One of the major medical discoveries certainly of my life and maybe others. I had a "reverse allergy"
I was allergic to the cigarettes and the Ultram. The Ultram was a type 1 immune response and cigarettes initiated a type 3 immune response. More importantly, there were no blood markers. I went to the ER just to get bloodwork.
What happened to me in general is the prednisone raised my body's allergic response by several orders of magnitude. I was allergic to Ultram. I was allergic to cogarettes. I was allergic to alcohol. I jusr couldn't tell until Prednisone created this immune rebound effect.
Remember, per emedicine and a lot of authorities, The only commonality for cluster sufferers is the use alcohol and tobacco. It was these substances that were causing my headaches and it was my immune system that was the primary system irritating the nerves in my head.
I can say with 100% confidence that if I had never had a drink, never smoked a cigarette, never took a pill, I wouldn't have these headaches.
I say there is a blood marker for this condition but as of yet I haven;t found it other than a raised white count (not from steroids).
Yes, I am saying my cluster headaches are caused not exactly by the cigarettes or alcohol but by the immune response to these substances.
to finish this story, in Jan 2006 I was admitted to the hospital and pulled off all medication...and I couldn't smoke. I had a severe headache from the withdrawal but then I was fine. I was put on Zyprexa because Prednisone made me schizophrenic. I highly recommend Zyprexa to anyone as it lowers the "ringing phenomenon" to almost 0 and I didn't have a headache in all of 2006...and I restarted smoking.
Since then I have applied for disability and was approved. I sit at home, alone and forgotten about. The mental side of my disease prevents me from working (thanks to Prednisone)
I had another shoulder surgery in 2007 in Jan. It made me seek and lots of headaches. 3 months later I had to go in and have gallbladder surgery. Does any of this ring a bell. The first shoulder surgery was in January and 3 months later I was in the hospital for something.
It's now 2008
Noone called me on Christmas even though I called 5 people and left voicemails wishing them Happy X-mas. It takes five minutes. Not even my family called. Couple that depression with the depression from having this disease and I was ready ro commit suicide. Probably the closest I ever come. I have pulled out of it for the most part and after reading everyone's post I am going to yield some information and clear up some misunderstandings.
____________________________________________
Cluster migraines are potentiated by alcohol, cigarettes, and opiates. The Alcohol is special in that there is an innate allergy (immune response) to it and it also raises IgG and IgE sensitivitiy to other substances.
In lamens terms, I lowers your threshold to tolerate external stimuli (allergens like cigarettes)
For the smokers, it takes a few years for the immune system to make your Occipital nerve and the tissue around it sclerotic and fibrotic. Well we can say if we stop these behaviors the headaches will go away. The people that don't smoke would have issue with this stance. What about them, they don't smoke and they get headaches.
The answer to that is I don't know. It may be as simple as you (non-smokers) have other allergies that can potentiate the headache. Or there may be a sub-type of cluster sufferers that have a whole different set of triggers and pathology.
I do know one thing. Once the immune system is setup to inflame these nerves and the nerves have had a little slcerosis or other damage to them all you can do at this point is stay away from the triggers and attemp prophylaxis. Physically, the headache system has already been setup and nothing short of replacing your immune system via stem cells and cutting out the occipital and trigeminal nerves...take the drugs. You can't unring a bell.
I am mostly talking to those who are reactive to Alcohol or Smokers. (Just because I know for a fact what I am talking about with these folks)
So here it goes,
___________________________________________
We have the most painful headache/disorder and the word needs to be spread.
There had been talk about some nitroglycerin and headaches...Researchers use nitroglycerin to initiate headaches to test the efficacy of their drugs. Headaches and nitro go hand in hand. There is one condition and for the life of me I can't remeber it but the treatment was placing a nitro patch on the anus.
Why the anus? Apparently the anal pathway is almost immediate for entering somthing into the blood steam.
Why is the headache always (or usually) in the morning?
In a word - Blood Pressure. As you wake your blood pressure goes up ciculating thicker (dehydrated) blood throughout the body and the occippital and trigrminsl nerve. The blood hits the nerve where it is either damaged (like mine) or sensitized nerves (like others with trigeminal symptoms).
How do you stop cycling?
That is one thing I have not been able to figure out. I know itls a metabolic trigger but I don't know wht it is.
Stopping within cycle-
It will be different for every person. It will be the same for every person. I am only familiar with tha Alcohol and cigarette cluster headaches per emedicine.com. You stop it by quitting drinking the smoking. Getting a few cervical injections. And go easy (but don't quit) the coffee.
I probably know more I just can't think of anything right now.
____________________
SIDENOTE:
One interesting fact is that in my battle to stop cluster headaches and my orher problems I became allergic to a lot of drugs. My mother, who has been called one of the worst schizophrenics around, also had the same allergies and deveoped some of them at the same age as me. She does not have headaches.
For some reason unknown to me I loooked up the first ailment I ever had which was an ear infection.I had a severe reaction to the sulfa in the medicine given to me. It's called Stevens-Johnson-Syndrome So I looked that up on emedicine.com. The going theory was that there was a defect in the CYP-450 system which is the system of enzymes that metabolize the drugs we take.
EVERY drug that made my mother psychotic and made my headaches worse or more frequent matched one for one and fell under one enzyme: 2D6.
I also noted that when I was really sick if I ate a high protein dinner I felt like a million bucks the next day.
Ergo: The enzymes in the liver depend on the protein in our diet.
__________________________
So that's it. That's my story. I would love to hear from anyone that has had a similar experiences.
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Ah! The foreigners put on such airs
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And their harlequin eyes.
The pain they inspire
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And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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chewy
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Re: A Headache Story - Part 4
« Reply #2 on: Jan 25th, 2008, 11:29am » |
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Quote:| Later that night, after I went home. I tried to go to bed and all of a sudden my head started ringing |
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So answer it. Heres a dime in case you need to call it back.
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Ghost
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Re: A Headache Story - Part 4
« Reply #3 on: Jan 25th, 2008, 11:29am » |
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Thats my story this time and I am sticking to it! 
Mike
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Brew
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Re: A Headache Story - Part 4
« Reply #4 on: Jan 25th, 2008, 11:30am » |
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Deej - This is out of control. Please lend a hand where you can.
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hotprestwich
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Re: A Headache Story - Part 4
« Reply #5 on: Jan 25th, 2008, 11:31am » |
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i dont think anyone has had the same experience you have had
heres some polite advise and listen carefully
fuck off this web-site
your full of shit,
i dont think your helping anyone
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Ghost
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Re: A Headache Story - Part 4
« Reply #6 on: Jan 25th, 2008, 11:34am » |
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but you got to admit he does tell a mean tale and gobbles up lots of bandwidth.
Mike
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starlight
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Re: A Headache Story - Part 4
« Reply #7 on: Jan 25th, 2008, 11:38am » |
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Ace Sterling:
All your information sucks so bad.
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LeLimey
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Re: A Headache Story - Part 4
« Reply #8 on: Jan 25th, 2008, 11:39am » |
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All I can say is CH-CH-CH-CH-CH-CH-CH-CHARMIN 
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Re: A Headache Story - Part 4
« Reply #9 on: Jan 25th, 2008, 11:39am » |
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Oh and are you taking anything for carpal tunnel syndrone or writers block??
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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Re: A Headache Story - Part 4
« Reply #10 on: Jan 25th, 2008, 11:41am » |
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Your last paragraph where you claim to explain your headaches and your mother's schizophrenia by liver enzymes and then claim eating protein makes it better bites.
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Dape
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Re: A Headache Story - Part 4
« Reply #11 on: Jan 25th, 2008, 11:44am » |
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on Jan 25th, 2008, 11:26am, Ace_Sterling wrote:| I can say with 100% confidence that if I had never had a drink, never smoked a cigarette, never took a pill, I wouldn't have these headaches. |
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And I can say with 100% confidence that if you had never had a drink, never smoked a cigarette and never took a pill you would still be a total pillock with delusions of grandeur
on Jan 25th, 2008, 11:26am, Ace_Sterling wrote:
So that's it. That's my story. I would love to hear from anyone that has had a similar experiences. |
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That's gonna be a bit hard as this is a site for a condition called Cluster headaches not CyberCHondriacs r Us
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Re: A Headache Story - Part 4
« Reply #12 on: Jan 25th, 2008, 11:44am » |
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on Jan 25th, 2008, 11:29am, chewy wrote:
So answer it. Heres a dime in case you need to call it back. |
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That's some kinda funny.
Potter
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Ghost
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Re: A Headache Story - Part 4
« Reply #13 on: Jan 25th, 2008, 11:44am » |
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I got some extra protein he can eat! ooops did I say that out loud?
Mike
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Re: A Headache Story - Part 4
« Reply #14 on: Jan 25th, 2008, 11:47am » |
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on Jan 25th, 2008, 11:30am, brewcrew wrote:| Deej - This is out of control. Please lend a hand where you can. |
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Boy, howdy.
This needs the coup de grace.
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
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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sandie99
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Re: A Headache Story - Part 4
« Reply #15 on: Jan 25th, 2008, 11:48am » |
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Just wondering... was it absolutely necessary to write such a long tale to us? 
Never smoked, never drank that much alcohol (one glass per year would have been my record in 2001, before ch when I gave it up) and I don't have allergies. Still, I've got ch.
Sanna
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monty
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Re: A Headache Story - Part 4
« Reply #16 on: Jan 25th, 2008, 11:50am » |
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on Jan 25th, 2008, 11:26am, Ace_Sterling wrote:
So that's it. That's my story.
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Olanzapine and/or lithium are what you need - the olanzapine is an atypical antipsychotic. The lithium controls mania. They both are pretty good for cluster headaches. Print out everything you have written here, and take it to your doctor. Godspeed.
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The outer boundary of what we currently believe is feasible is far short of what we actually must do.
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Brew
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Re: A Headache Story - Part 4
« Reply #17 on: Jan 25th, 2008, 11:51am » |
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Wow. Four whole parts. One more than The Godfather.
I think I'll wait for the movie.
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hotprestwich
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Re: A Headache Story - Part 4
« Reply #18 on: Jan 25th, 2008, 11:53am » |
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when hes full of shit, theres no point answering him as thats what this weirdos buzz is,
when headache strory part 5 comes on thread,
no one should reply,
dosnt matter how many user names hes got we all know he stinks,
p.s what a troll, sorry for being ignorant
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Re: A Headache Story - Part 4
« Reply #19 on: Jan 25th, 2008, 11:58am » |
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This thread is worthless without pics.
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George_J
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Re: A Headache Story - Part 4
« Reply #20 on: Jan 25th, 2008, 12:02pm » |
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on Jan 25th, 2008, 11:58am, Jimi wrote:| This thread is worthless without pics. |
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Now THAT'S funny. 
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Ah! The foreigners put on such airs
Wearing the tangerine suits
And their harlequin eyes.
The pain they inspire
Draws in harmonica melodies
And the feathers of birds
Which flame up at their touch.
It all comes to light in the sheer
Debonair.
(Ellen)
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PollyPocket
CH.com Alumnus
New Board Hall of Famer
Someone I am is waiting for my courage.
Gender:
Posts: 2496
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Re: A Headache Story - Part 4
« Reply #21 on: Jan 25th, 2008, 12:05pm » |
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on Jan 25th, 2008, 11:58am, Jimi wrote:| This thread is worthless without pics. |
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what his story is worth
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“Life is all about timing... the unreachable becomes reachable, the unavailable become available, the unattainable... attainable. Have the patience, wait it out It's all about timing.” - Stacey Charter
"If I don't remember it happening, it never happened. " - Tori
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LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
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Re: A Headache Story - Part 4
« Reply #22 on: Jan 25th, 2008, 12:16pm » |
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on Jan 25th, 2008, 11:58am, Jimi wrote:| This thread is worthless without pics. |
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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sandie99
New Board Hall of Famer
Wish it, dream it, do it - inspite the pain!
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Posts: 10429
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Re: A Headache Story - Part 4
« Reply #23 on: Jan 25th, 2008, 12:28pm » |
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Helen, is that your toilet...? 
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CH happends, Live anyway! PF days to us all!
"Do what you can and let God take care of the rest. Leave your heart wide open and always wish for the best" (Sanna Hillu)
"No matter how far out your dreams are, it's possible" (Marketa Irglova)
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LeLimey
CH.com Alumnus
New Board Hall of Famer
OUCH-US - Less "ME" and more "WE"
Gender:
Posts: 11720
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Re: A Headache Story - Part 4
« Reply #24 on: Jan 25th, 2008, 12:31pm » |
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Sanna really! As if I'd have a horrible trick like that in my house to surprise unsuspecting visitors.... sheesh!
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The arsehole I'm divorcing needs to get a life and stop stalking mine
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