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Topic: any idea???? (Read 917 times) |
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black
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well i havent got a headache since 29th of november!except maybe 2 or 3 small crisis of kip3.i was on lyrica and tegretol till 26th of that month and that was about for 2 months.it was the worst therapy i ever done.always sleepy, heavy head and along with sideeffects i had daily crisis of kip 5-7 twice a day.the neurologist that prescribed me these meds was a new one for me and along with hospital he also had an afternoon office in which u have to pay 150euro per visit.the fisrt time i went ther didnt know about this.is too expensive for me.so the second time and meanwhile we spoke on phone how i was he had to prescribe me more meds as i was running out shortly.i told him i couldnt afford to pay him a visit at office now and then so if we could arrange a hospital visit it would be fine with me.the answer was that in hospital he sees only his university students!!!and how we will manage this?the answer was i dont know find another!!
i was so outraged that i cut therapy at once without tapering them off in few days like i had to(that was on 26th)next days heavy shadows and on 29th i had the strangest crisis.it was the same sympthoms but in addition to multiple pain pintches we get there was only one deep in brain i felt.it sounds better but i brought me on my knees for 2 hours.and i really cant say what kip it was.3 but 8 as good.i never had something like this before and it wasnt shadow definition.from that day i am free confused and dont know if i turned episodic(i was pain free september for my cycle as chronic) or it comes back tomorrow.unfortunately oxygen didnt work for me but i am pretty sure it had to do with the mask.i was breathing also enviroment air.so during crisis i took 3 pills xeforapid along with one pill of salospir.latest habit.i am not reccomending to anybody to take these steps.but i really want to know whats the reason for pain free.i am getting anxious instead of happy cause i know that if it comes back it will really break me.
happy new year everybody and sorry i havent post more often even if i get in most of the times as guest.
i cant find comfort words or advises to give.hope this changes.
pf wishes
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Bob_Johnson
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Re: any idea????
« Reply #1 on: Jan 17th, 2008, 1:10pm » |
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I would guess that you experienced some withdrawal from one of these meds.
But neither of them is a standard treatment for cluster. I'd suggest that you print out both of these articles and use them to discuss treatments when you can afford to do so. These meds are the most used, tested, and (we know) effective. This is the best route to start rather than using meds which are, at this time, in the trial stage.
HERE ARE TWO MAJOR DOCUMENTS WITH RECOMMENDED TREATMENTS FOR CLUSTER HEADACHE, ONE FROM A U.S. PHYSICIAN, THE SECOND FROM EUROPE.
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http://www.plainboard.com/ch/chtherapy.pdf
Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S. (2002. Rozen)
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Treatment guidelines from Europe
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A. May, M. Leone, J. Áfra, M. Linde, P. S. Sándor, S. Evers, P. J. Goadsby:
EFNS guidelines on the treatment of cluster headache and other
trigeminalautonomic cephalalgias.
European Journal of Neurology. 2006; 13: 1066–1077.
Download free full text:
http://www.efns.org/files/guideline_49.pdf
(Thanks to "cluster" for link.)
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Bob Johnson
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vietvet2tours
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Re: any idea????
« Reply #2 on: Jan 17th, 2008, 1:13pm » |
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What he said and get that mask fixed.
Potter
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Kill em all let God sort em out
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black
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thanks for the concern but what i am saying is that i am pain free.just dont know if what i ve done has helped with that.i ve been over many meds and therapies that havent helped and when i cut tegretol and lyrica that didnt helped while i was taking them i am becoming pain free.thats the mystery to me. 
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vietvet2tours
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Re: any idea????
« Reply #4 on: Jan 17th, 2008, 1:27pm » |
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on Jan 17th, 2008, 1:20pm, black wrote:| thanks for the concern but what i am saying is that i am pain free.just dont know if what i ve done has helped with that.i ve been over many meds and therapies that havent helped and when i cut tegretol and lyrica that didnt helped while i was taking them i am becoming pain free.thats the mystery to me. |
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I been pf for 1300 days plus or minus.I don't know why but just be thankful. Keep the o2 full and handy.
Potter
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Kill em all let God sort em out
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black
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i guess we ll never get any answers with the devil.thanks potter
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Stinger
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I love YaBB 1G - SP1!
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Re: any idea????
« Reply #6 on: Jan 22nd, 2008, 12:53pm » |
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In my past 18 years of experience, many times I thought that what I was doing was helping, only to figure out later on that it was just the end of my cycle. I normally didn't figure it out until maybe years later. As we all know, we will try anything to get rid of the beast. I wish you all well. It is really nice being here, I just came in yesterday, and I feel hope has arrived.
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