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Nihil
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Nihil
« on: Mar 3rd, 2004, 12:27pm »
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Hi everyone. I'm Xavier from Belgium, 21 and chronic sufferer. I come here often, but seldom post anything.  
 
I've been through another period of experimenting with treatments and again we've come up empty. I've tried almost anything anyone can think of -including what people here have posted-.  
 
The attacks come every day, 6-8 each lasting from 70 minutes to two hours. I've built up quite a pain threshold by now, but recently it's been horrible.  
Not every week is the same, as I'm sure you'll know.
 
I want to wish you all the best and hope you all find the strength to deal with this burden that is so often underestimated by so many.
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There is a twisted kind of sickening comfort to these moments, in which the dull, numbing light makes it seem so self-evident that all is not -and will not be- well.
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Re: Nihil
« Reply #1 on: Mar 3rd, 2004, 1:25pm »
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Hi Xavier and welcome to the board.I'm sorry you are suffering so much at the moment and that none of the meds are helping. Which ones have you tried? I hope you get some relief soon and my thoughts go out to you.
 
   All the best Filbert
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Re: Nihil
« Reply #2 on: Mar 3rd, 2004, 3:18pm »
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Hey X!
 
Welcome to the group.  I'll echo Filbert, please let us know what you've taken.  Even if it didn't wrok for you.  All the info we can get helps us learn about this beast.  Keep on experimenting, there has got to be something out there to help you.  
 
Wishing you PF days.
 
Belle
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Re: Nihil
« Reply #3 on: Mar 3rd, 2004, 3:29pm »
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Sorry to hear you are having such a rough time. Cry  I hope things get better for you.
Andrea
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Re: Nihil
« Reply #4 on: Mar 4th, 2004, 11:47am »
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on Mar 3rd, 2004, 3:18pm, Belle wrote:
I'll echo Filbert, please let us know what you've taken.  Even if it didn't wrok for you.  All the info we can get helps us learn about this beast.  Keep on experimenting, there has got to be something out there to help you.  

 
Ditto...
 
Welcome aboard man!
 
Chris
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Re: Nihil
« Reply #5 on: Mar 4th, 2004, 11:59am »
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Welcome and sorry that you had to find us.  Wishing you PF times.  
 
Tiannia
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Nihil
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Re: Nihil
« Reply #6 on: Mar 11th, 2004, 12:07pm »
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Thank you all. As much as the pain itself, it's the impact it has on who you are, what you do, ... For my part, I can honestly say it has ruined a large portion of my life so far. My studies, my relationship, my bands, ...
 
I've tried Zomig, Cafergot, Imigran, Depakine, Medrol, Vermapil, Lidocaine, Codeine, Accupressure, Oxigen, Lithium, Darvcocet, Percocet, Adrenaline, ...
and a number of other drugs, herbs, treaments, ...
 
Most of it didn't help, some did for a while and others still triggered an allergic reaction.
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There is a twisted kind of sickening comfort to these moments, in which the dull, numbing light makes it seem so self-evident that all is not -and will not be- well.
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Re: Nihil
« Reply #7 on: Mar 11th, 2004, 2:04pm »
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Hello Xavier,
 
I'm so sorry so many meds are not working for you.  I really do wish there was something I could do to help you.  I'm so sorry you have to be here, but if you ever need an ear to listen, we're really good at that!
 
Smileymel
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Re: Nihil
« Reply #8 on: Mar 11th, 2004, 4:48pm »
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Hi and sorry for the madness , have you ever tried Inderal ? What does your neuro say about this ? I am sure pushing the meds is the drill for most but there has to be relief somewhere for you. Myself I am episodic and in a cycle now, exhausted , irritable , and I cry all the time. I take Inderal and Zomig but have been on many others over the past five years, Oxygen helps too. We are here for you.... Cool
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Re: Nihil
« Reply #9 on: Mar 11th, 2004, 6:01pm »
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Hi Xavier,
 
welcome to posting on the board.
As Filbert said I'm sorry you are suffering so much and nothings worked so far for you Keep trying and pushing your GP and Neuro for alternatives.
You will get your life back!!!!
 
I know as an Episodic how much damage this condition does and I'm no where near your level!!! Friends change relationships burn, your personal life hits the floor. But you are a CHr a person that endures evil amounts of pain! everything is within our capabilities!! If we can stand pain like that nothings impossible.
 
Stay strong my Friend enjoy your PF days as you get them.
 
Scott
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Nihil
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Re: Nihil
« Reply #10 on: Mar 11th, 2004, 6:24pm »
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Actually, Inderal is one of the first things I tried before I went chronical.  
 
I've been under treatment for over five years now, with neurologists, herbalists, regular doctors, etc.
 
The head of neurology at the local University hospital says it looks grim. He thinks I'm one of those few who might spend their life looking for some relief.
 
Not a very hopeful statement, but I just keep searching. Though I've thought about eating a bullet more than once.  
 
I "survive" through meditation, as crazy as it sounds. But that only works in a limited way when attacks are mild. And of course the demands of this modern life hardly allow much of it.  
 
Going to try a special pain clinic for people with back injuries soon, maybe that will turn up something.  
 
Thanks again for your kindness.
 
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There is a twisted kind of sickening comfort to these moments, in which the dull, numbing light makes it seem so self-evident that all is not -and will not be- well.
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Re: Nihil
« Reply #11 on: Mar 11th, 2004, 7:52pm »
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Bonsoir Xavier
 
et bienvenue a la maison des mals a la tete!
 
That's it,  don't speak French really! Sorry you are suffering so badly.
 
The number of your attacks suggests to me that
most abortive drugs would be difficult to use as you have so many attacks you would need to take more than was safe (e.g. Imigran), it suggests 02 as a good option as you can use that as many times as you like in any day. Did you use it at the right flow rate when you tried it last?
 
 
Keep us informed how you are getting on
 
Wendy
 
P.S. Just another thought, if all the normal CH treatments are failing you, is it worth revisiting the main ones that work for others and making sure the dosages are correct e.g. Verapimil
 
 
 
« Last Edit: Mar 11th, 2004, 7:57pm by pubgirl » IP Logged
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Re: Nihil
« Reply #12 on: Mar 11th, 2004, 8:05pm »
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Xavier
 
Sorry, last question. Has CPH (chronic paroxysmal hemicrania) been ruled out by your Doctors?
The duration of your attacks doesn't fit CPH, but the frequency and resistance to CH drugs does.
 
Since you seem to have tried everything, a short burst of Indomethacin might well be worth a try.
 
Wendy
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tnpruby
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Re: Nihil
« Reply #13 on: Mar 12th, 2004, 8:54am »
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Xavier, I have been to a pain clinic for treatment. It did not work for me but hey it may surprise you. What about the 02 Wendy suggested ? For a doc to say to a patient in pain, " It looks Grim" What a frigin not a very nice person. I would've snapped right there, what about antidepressant's ? I know...you are probably screaming at the screem saying I TRIED THAT ALREADY...just tryin to help. hang in there...I m here.. Cool
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Re: Nihil
« Reply #14 on: Mar 12th, 2004, 9:44am »
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welcome!  I really don't have anything to add, just want to welcome you and wish you luck!
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Re: Nihil
« Reply #15 on: Mar 12th, 2004, 6:11pm »
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on Mar 12th, 2004, 8:54am, tnpruby wrote:
For a doc to say to a patient in pain, " It looks Grim" What a frigin not a very nice person.

 
You should hear some of the things my internist has said to me over the years!
 
I'd rather he be frank with me and admit he doesn't have any more ideas than to pretend like he knows what he's doing and screw around with my body, and especially if it were my CH and my brain he was experimenting with.
 
I guess it depends upon the kind of relationship you have with your MD....
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No, it's not a headache--it's a Stage Ten Primary Chronic Periodic Idiopathic Trigeminovascular Cephalalgic Crisis.
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