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Topic: It's always about me! (Read 930 times) |
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Robert_C.
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It's always about me!
« on: Aug 2nd, 2004, 9:08am » |
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My partner always says: "It's always about you isn't it?" 
"Duh!…yeah!" 
I'm a sarcastic (trying to be smartass) French Canadian  (and that explains my weird english), who lives in California now, and I have been living with headaches for as long as I can remember. In my family, headaches are a common thing. Nobody pays it more attention then that.
5 years ago, a doctor realized that they were coming back every year at almost a regular rate. He said that they were caused by 'seasonal depression' and sent me to a shrink. Well…I WAS getting depressed with all those headaches. Do I need to say that all the Prozac and other stuff just made me more messed-up?
Finally, 2 years ago, a new GP decided to sent me to a neurologist who diagnosed me with CH. He explained to me what it was and I went on line to browse the subject and confirmed that he was right. Little did I know that being right about a diagnosis didn't mean that he knew anything about it.
Last November, it started again…and never stopped. After 6 or 7 different treatments (including O2, lithium, etc) that didn't worked, he just gave up on me. 2 months ago he said that he had tried everything he could and that from now on, the only thing I could do was 'pain management'. On a bad week it would go up to 8 on the Kip scale. Not so bad. I was tired because of the lack of sleep, but I could still go on with my life.
But to make the story short, I had given up with finding a solution.
About 6 weeks ago, the pain just increased, averaging 9 on the scale, 4 or 5 times a day and 2 times a night. Last week, I started to reach 10s, in the middle of the day, at work. It was time to do something. With no help whatsoever from my neuro, my best chance was the net. So here I am.
I have learned more in the last 2 days then in the last 9 months. This site is GREAT. Everybody's been so nice (yes, even you Un-Solved) and you have no idea how much it helps me.
I have questions (and opinions) on about every subject. Don't mind my silliness, sometimes I write before I think (well…actually…most of the time).
I think I'll change my name to Silly or Sarcastic. No...Smartass will do  . Now, where could I find a picture for that….? 
See you around. 
Tata!
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Giovanni
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Re: It's always about me!
« Reply #1 on: Aug 2nd, 2004, 10:36am » |
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Hi Robert,
Welcome to CH community. There's a lot to learn on this website so start your diggin!
On your meds, have you tried verapamil? If so, maybe your RX was too small to do any good. Also, some over the counter meds have helped some of us like melatonin, 5-HTP, B complex-vitamins and the like. Also, was the O2 through a "non-rebreather" mask at a high flow rate? Tried imitrex stat dose injections?
I have used the alternative treatment with good success:
www.clusterbusters.com
Take a proactive stance with this syndrome and fight back. Good luck,
John
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eddie
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Re: It's always about me!
« Reply #2 on: Aug 2nd, 2004, 1:04pm » |
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to john i have tried
5-htp
b complex
melintonin
+the coq10
all these seem to help me you have made a differance
for me oh yes i also have o2 i do feel better
THANKS FROM EDDIE IT HAS KNOCKED THE BEAST DOWN
SOME i can sleep better THANKS JOHN
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PFDAN TO ALL>><< http://www.putfile.com/ededearl>>><music> http://www.myspace.com/pamneddie
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Giovanni
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Re: It's always about me!
« Reply #3 on: Aug 2nd, 2004, 4:32pm » |
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Quote:eddie Posted on: Today at 1:04pm
to john i have tried
5-htp
b complex
melintonin
+the coq10
all these seem to help me you have made a differance
for me oh yes i also have o2 i do feel better
THANKS FROM EDDIE IT HAS KNOCKED THE BEAST DOWN
SOME i can sleep better THANKS JOHN |
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Glad you found some relief Eddie.
John 
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Kris_in_SJ
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Re: It's always about me!
« Reply #4 on: Aug 2nd, 2004, 8:23pm » |
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So glad you found us and have found a little relief.
Don't give up the fight! Any neurologist who "gives up" on you, isn't worth his/her weight in ... brain matter?
If all else fails (or even if it doesn't), follow John's link to clusterbusters.com. Many have found relief there.
Hugs,
Kris
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Robert_C.
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Re: It's always about me!
« Reply #5 on: Aug 2nd, 2004, 10:26pm » |
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Giovanni,
I haven't kept any note on everything I took over the months or any dosages 
How was I suppose to know! 
The O2 I remember, I've tried at 15 for a few weeks with a non-rebreather. Didn't work.
Lucky Eddie, I'm happy for you...but what's a coq10?
I had an e-mail exchange with my neuro today (is a very busy man, you know ) and asked him to send me a list of meds that I have taken. I'll go from there. He also increased the slow release Morphine to 60 mg morning and night and 30 mg in the afternoon. With that (and about 12 Percocet a day and 60mg of Prednisone), life was sort of wounderful today  , even if I felt like    
But it did work a little. I had to peaks less today then in the last 6 weeks (about 8 a day). Frankly, I take whatever I can right now.
Don't worry, I know it's only a temporary solution until I try something else (and for that, I'll have to go see somebody else).
Tata!
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ExPat_jac
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Re: It's always about me!
« Reply #6 on: Aug 2nd, 2004, 11:26pm » |
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Robert_C
I've been living with this beast since I was seven...the last 20 or so year chronic....BAD level 6-9 EVERY FREAKIN day.....
My advice?
GIVE UP THE MORPHINE. It's a trap....to start with, most of the heavy stuff never really does anything for the headaches...just makes the beast angry and fucks up the life....
Trust me...you can not imagine how many times I've look at a tall building and figured...anyway.....
You *can* live with it....it's a brute....shit, I gave up sleep so long ago that my body no longer NEEDS sleep!
But, over time I did learn to stay away from the heavy pain managment drugs...they never really helped....
Percocet ??? What doctor gave you those for CH's????
It only makes them worse!
If the heavy drugs are your answer, then maybe you might not have CH's....I've found VERY few CH suffers that the heavys work for, most find that it makes the headaches worse....
What ever works man...but you *really* ought to find a better answer or just live with it....I know it's hard..hell, I know it better than most as I am now in a country where I can't even get the basics like Air Conditioning or O2!!!!! Yesterday, I beat a hole in the wall with a heavy Kp 9.9999 and couldn't even speak the language well enough to get a friend to take me to a doctor or emergency room....
But Morphine to 60 mg morning and night and 30 mg in the afternoon??? 12 Percocet ????
Dude...I'd as sooon live with the pain....
(and trust me, I'm not Saint  )
jac
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Kris_in_SJ
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Re: It's always about me!
« Reply #7 on: Aug 3rd, 2004, 8:51pm » |
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Ditto to the above .... PLEASE get rid of the narcotics! They DO NOT work ... repeat DO NOT work for clusters. The high might help you overlook some of the pain, but your headaches aren't being addressed, and you will end up with a monkey on your back, as well as the beast in your head.
BAD NEURO!
No one here wants to see you suffer (we're very much against suffering), but please seek another opinion.
Kris
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ExPat_jac
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Re: It's always about me!
« Reply #8 on: Aug 3rd, 2004, 10:40pm » |
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>> BAD NEURO
that was my question...what kind of neuro knows enough to diagnose CH but then not enough not to give his patient narcotics??? Makes one wonder....did his doc sleep through the second half of class that day?
For CH narcotics are a big no no...they only make the situation worse...I've never seen a single CH suffer get any benifit from them other than the high (hey...I'm human...the highs nice) BUT not worth the back side.....
jac
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Robert_C.
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Re: It's always about me!
« Reply #9 on: Aug 3rd, 2004, 11:32pm » |
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Much thanks guys.
You're giving me a lot to think about. But you don't know half of it. I'm on Perocet now because I've been taking Vicodin for so long that it doesn't work anymore!!!
Every time I talk to my neuro about addiction, he always said that he didn't think I would get addicted to it. I'm not Dumb or Dumber...I'm dumbest.
Not only my neuro but also every single doctor that I have met at Kaiser (my HMO) were always very liberal about giving me narco. My generalist even refused to give me Halcion (sleeping pill very popular in Canada) because he said he was afraid I would get addicted to it, but he would turn around and could give Vicodin by the truck load.
I retract everything I have ever said about my neuro.
He's not the not a very nice person...
Nothing like a good slap in the face.
I KNOW the narcs don't do anything...I've taken enough. 
Jac, you certainly don't sound like a Saint  but what you and Kris just wrote have a serious impact on my brain right now.
Thanks. Needed that. 
I guess that's why I came here after all.
Robert
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ExPat_jac
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Re: It's always about me!
« Reply #10 on: Aug 4th, 2004, 12:15am » |
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Robert...see, from a CH point of view narcotics seem to more agrivate the problem, and never really do much for the pain...what you end up with is not only the headachs from the CH's but additional headachs from the narcotics! This is why, while I am not a saint and enjoy a good buzz along with the next guy (sheepish grin) I stay away from certin things....heavy narcotics being one of them....alcohol being another....see, both of these tend to ether trigger a CH attack (and I'm chronic...I really don't *need* to help MY deamon along..he does quite well without my help) or just make it worse....
My advice? Take it for what it is worth....hell, *I* don't even take my own advivce...but hell, I'll type it anyway
Clean up from the narcotics, read all you can here, copy articles down from here and from O.U.C.H. and start doctor shopping till you find someone that *really understands CH's.
Look...as I said, I live with the beast EVERY FREAKIN day...I can do it, so can you...no, it's not easy. This place helps A LOT. At lease we here understand.
Take the wife out for a good steak...she's earned it (and while you're at it...would you FedEx one to me here..medium...and some fries..I'd give my right....never mind...for a good decent ribeye right about now )
peace my friend....
jac
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Robert_C.
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Re: It's always about me!
« Reply #11 on: Aug 4th, 2004, 8:39am » |
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Thanks Jac. I couldn't sleep tonight. Not because of the pain (for once) but because I couldn't stop thinking about this. The process is going well and I'm starting to see where I'm going.
Nothing like a good kick in the  to start you up for the day. (not that I'm into this kind of stuff...you know)
Tata!
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judyw
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Re: It's always about me!
« Reply #12 on: Aug 4th, 2004, 6:41pm » |
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Hi RC, welcome aboard...You have been given a lot of good thoughts and I hope you will keep us updated on how things go...My only thought is when copying any info for your Neuro, make a copy for the GP, too...I seem to have always gotten more effect and support from these guys...You have had a C Scan done, right? Two key things I missed seeing is the amount of dosage and that the O2 is abortive and works best when caught in the beginning of attack...Good Luck and please keep us posted on how things go....Sharing is our best gift...PPP
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Robert_C.
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Re: It's always about me!
« Reply #13 on: Aug 4th, 2004, 11:27pm » |
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Quote:| had a C Scan done, right? |
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Well Judy, I had a C scan, and then a D scan, and an E...
They did find that there was something missing. So I went to the store and bought it...(if someone can tell me how to insert a picture, I'll show you)
Quote:| Two key things I missed seeing is the amount of dosage and that the O2 is abortive and works best when caught in the beginning of attack |
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My doctor is sending me a list of all the medication I have tried in the last 6 years. I'll keep you posted.
With the O2 at 15 the only thing I got, was a clean nose.   
Sorry. I guess I'm in sarcasm mode again. I should really change my name to something that would reflect that. Hmmm
Thanks for the welcome Judy. I think I'm here to stay (yeah, stay away from Jac )
Tata!
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ExPat_jac
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Re: It's always about me!
« Reply #14 on: Aug 11th, 2004, 1:05am » |
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>> Thanks for the welcome Judy. I think I'm here to stay (yeah, stay away from Jac)
Now now...play nice or I'll take my ball and go home and tell dad!
(and HE'LL kick your butt )
How's things Robert...things starting to look up? Getting any better?
Keep us informed....
Jac
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Robert_C.
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Re: It's always about me!
« Reply #15 on: Aug 11th, 2004, 9:11am » |
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Hey Jac,
No better yet, but working on it.
I'm starting to realize that my neuro as no time for me whatsoever. What gave it up is when he asked me yesterday:
"What medication are you on right now?" and "My notes here says that your are taking such and such"
And me to answer: "No Dr., we spoke last week and you told me to change it to this and that"
So that made me realize that from now on, I will have to question everything he tells me. 
Unfortunatly changing neuro is not an option for me unless I'm ready to pay for it.  I know, a lot of people can't even afford a neuro and I'm grateful to have one. It's just more work then I tought. Thanks to this place, I now have more knowledge of CH and can question his treatments. SOmehow, he doesn't seem to like that.
Thanks for the concern, Pat, I appreciate it, my friend.
Robert
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miCHel
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Re: It's always about me!
« Reply #16 on: Aug 11th, 2004, 5:05pm » |
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Salut Robert,
Un autre canadien français sur le site... Bienvenue!
OK Switching back to English now... Sounds like you're having it rough right now. Sorry about that. I am with these guys, stay off the narcs! And challenge that neuro. Print some of the stuff on the left (medical info) and try to discuss some possible treatments with him.
And if you want to chat in French, just PM me. We don't have to bother everyone here with our "poutine" stories. If you visit the OUCH Canada site, you will find that there are a few of us Franco-Canadian-CHers over there.
Hang in there mon ami!
miCHel
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Superpain
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Re: It's always about me!
« Reply #17 on: Aug 11th, 2004, 5:35pm » |
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on Aug 11th, 2004, 9:11am, Robert_C. wrote:Hey Jac,
Unfortunatly changing neuro is not an option for me unless I'm ready to pay for it. Thanks to this place, I now have more knowledge of CH and can question his treatments. SOmehow, he doesn't seem to like that.
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Sounds like you are wasting your time. Time IS money, and spending time in pain seems more expensive to me.
Weigh your choices. Fuck around with an impotent doc, or pay a few dollars to get PF...
I guess I was lucky...
I paid $165 for my neuro visit and he sent me out with $280 in imitrex, AND sent me home with the right meds to break my cycle. That's with NO insurance.
My advice, find another doc.
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Chris
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ExPat_jac
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Re: It's always about me!
« Reply #18 on: Aug 11th, 2004, 9:22pm » |
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on Aug 11th, 2004, 9:11am, Robert_C. wrote:Hey Jac,
I'm starting to realize that my neuro as no time for me whatsoever. What gave it up is when he asked me yesterday:
"What medication are you on right now?" and "My notes here says that your are taking such and such"
And me to answer: "No Dr., we spoke last week and you told me to change it to this and that"
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I'm lost here a bit Robert...he has you on percocet and vocodan (and if I'm not mistaken at one time you even said morphine)...then he does not know what you are taking...then he "told me to change it to" such and such???
Wow, they must do things strangely in Canada
How do *you* change it? Is he not the one that has to write the script? Does he send you to another doctor to have the meds actually prescribed? I'm lost here....
And again...he has you on narcs for CH's, does not know what he has you on...and he's not costing you anything?
lol...damn..I need a doctor like that here
All joking aside...start setting aside a few bucks till you can save up enough to foot the bill for another doctor...or maybe talk to your insurance company and lay out what he is doing and your concerns that he has no idea what he is doing...I'm sure when presented with information such as this, liability would cause them to rethink there position about allowing you to seek another nuro....
(I'd even mention the liability issue and the fact that he is giving you narcs for a condition that does not call for them...and does not seem to remember that he is giving them to you...these are "bell ringers" that would surely interest them...)
You are lucky..you have the ability to at least be able to see a doctor and get something for your pain...where I am, short of a witch doctor I'm pretty much out of luck...so take that for what it is worth, and take advantage of the better position that you are in...me, I'd give most anything to have even one day relief from this pain...or even a reduction in it....
It does sound like you need a better doctor!
Hell...a veterinarian sounds like he'd do a better job!
(just watch that he does not offer to neuter you )
jac
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| « Last Edit: Aug 11th, 2004, 9:27pm by ExPat_jac » |
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IndianaJohn
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Re: It's always about me!
« Reply #19 on: Aug 11th, 2004, 10:26pm » |
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Ditto to everything said already. Hope you find some relief.
PFDAN!
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Did my brains fall out or is this headache over?
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Robert_C.
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Re: It's always about me!
« Reply #20 on: Aug 11th, 2004, 11:31pm » |
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Quote:| Un autre canadien français sur le site... Bienvenue! |
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Michel, Je t'ecris plus tard
Quote:| he has you on percocet and vocodan |
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Jac, It's one or the other. When I start getting use to one, I switch to the other. As for the morphine, I'm taking it so I can stop the other two. It's 30mg of slow release morphine that I take 3 times a day. It has a lot less side effects then the other two. Right now I'm in transition between Perocet and Morphine (and God do I sound like a junky!!!). He is slowly increasing the morph to the point when I won't need anything else. I can hear people screaming while reading this. My next research will be to find out if morphine is addictive or not (or more or less then the other two).
But the bottom line is that it works. It make my CH much more tolerable. Last night I even slept 7 HOURS! Anybody remembers what it feels like?
Quote:| he has you on narcs for CH's, does not know what he has you on...and he's not costing you anything? |
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That's exactly right. Kaiser is a big HMO and my healthcare is being paid by my employer. Regarding my Dr., let me put this another way:
He's a fucking moron who finally got a real patient that he's just trying to push aside because the system doesn't allow him to spend more then 15 minutes per patient and that he actually would have to do some research on CH to treat me properly and he doesn't have time because his Volvo broke down this morning and he has to pick up the kids after school otherwise his wife is gona yell at him tonight and diner won't be ready when he gets home. 
Quote:| Wow, they must do things strangely in Canada |
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I've been living in California for 6 years now and I think they do things strangely here.
But my big news of the day  , is that I just learned that I will be going back to Montreal in a few months. Bye Bye USA! I'll miss you. 
So, I don't think it's worth the effort to start shopping around for another neuro until I move. It should be fun to do some Canadian-Neuro bashing for a change.  I'll let you know.
Tata!
Robert
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miCHel
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Re: It's always about me!
« Reply #21 on: Aug 12th, 2004, 9:12am » |
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Quote:| I will be going back to Montreal in a few months. |
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Hopefully you will not do that in the middle of winter. That would be a little depressing... and crazy
But you will find a great place in Montreal to treat you. They have a few neuros who know a lot about CH. I went there for the first time during my last cycle. Incredible! I called for an appointment and they saw me the next day. They told me they usually see CH patient within 48 hours. After almost twenty years of being misdiagnosed and/or treated with the wrong medecine, this felt like heaven.
As for the cold weather, there's not much we can do about it 
Have a good day guys!
miCHel
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ex_pat_asia
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Re: It's always about me!
« Reply #22 on: Aug 12th, 2004, 1:24pm » |
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on Aug 11th, 2004, 11:31pm, Robert_C. wrote:
My next research will be to find out if morphine is addictive or not (or more or less then the other two
But the bottom line is that it works. It make my CH much more tolerable.
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Robert, This should be a no-brainer or am I missing something? Any of the opiates are addicitve...physically so. There is also a lot of anecdotal evidence that drugs such as these only aggravate cluster. I can vouch personally that demerol, codeine, etc, all are like throwing gasoline on the fire in my case.
I hate this feeling that you are playing with that fire. I hate saying that I feel you shouldn't be doing something when, by your own words, it stops your pain or makes it more tolerable. But then the drugs you are taking would make "shit creek" feel like a walk in the park as long as its coursing through your body. Sure its more tolerable.
My advice: seek another dr. now, don't wait a few months to go back to Canada. Get the drug history that your busy doc said he will send you and take it to a new guy. Some of the things you have tried were possibly mis-prescribed by the doc... (maybe even probable considering-I am struck that he is not very cluster trained.) Could be that a new doc will be at least more informed. But stay tuned here and submit your moves to the board for feedback. There is a ton of experience to bounce things around here. You will at least get armed with the right questions.
I just feel you are on the wrong track at the moment. It's worrisome.
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| « Last Edit: Aug 12th, 2004, 1:27pm by ex_pat_asia » |
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ex_pat_asia
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ExPat_jac
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Re: It's always about me!
« Reply #23 on: Aug 13th, 2004, 6:51am » |
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on Aug 11th, 2004, 11:31pm, Robert_C. wrote:
Jac, It's one or the other. When I start getting use to one, I switch to the other. As for the morphine, I'm taking it so I can stop the other two. It's 30mg of slow release morphine that I take 3 times a day. It has a lot less side effects then the other two. Right now I'm in transition between Perocet and Morphine (and God do I sound like a junky!!!). He is slowly increasing the morph to the point when I won't need anything else.
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Duhhh...haha I guess not! Again, I really don't think you are helping the CH's, just masking them...hell...give me enough morphine and I'll smile as you cut my arm off in front of me!
Switching back and forth from Percocet to Vicodin isn't really doing anything....basicly your trading oxycodone for hydrocodone...ok, so we swap a few hydogen atoms...big deal
>> My next research will be to find out if morphine is >> addictive or not (or more or less then the other
>> two).
No need to even crack the books for this answer...I can tell you this one easily...
Yes...VERY addictive! Next to nicotine, mostly likely the most addictive substance on earth (next to some of the cute asian women here )
Morphine is basicly herion....need I say more???
No dude..your doctor needs to be bitch slapped....and hard!
Do some serious reading Robert...you're heading down a bad path...fast I think my friend....
Me I never chew anything unless I have an idea of the addiction potential...doesnt stop me from doing it...but I want to know going in what to expect...switching Vics for Percs isn't a change....
Peace bro....
ExPat_Jac
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alleyoop
New Board Hall of Famer
Wake me up when it's all over.
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Re: It's always about me!
« Reply #24 on: Aug 13th, 2004, 11:47pm » |
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Hhhhhmmmmmmmmmm.......................
Morphine, percocet & vicodin!!!!
Makes my little cocktail of lithium & verapamil pale in comparison!!
Addiction question aside, if you aren't rebounding from all that and it's killing your CH, I may have my neuro talk to yours!
.........................................alley
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I know that the Good Lord won't put any more on you than you can stand, but sometimes I wish He weren't quite so PROUD of ME!
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