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stoneystone
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It's all abouit Lithium
« on: Sep 16th, 2002, 1:10pm »
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My name is Joe Stone and I have been using this site since it's inception.  What a Godsend it is.  I've been an episodic sufferer for 20 years.  The last several years I've been using Imitrex exclusively as my treatment because it was the only thing I had tried that worked.  The last 3 cluster cycles have only been 1 month apart instead of the normal 6 I'm used to.  They have been brutal.  The worst theyv'e ever been, occuring every single day.  I feared the worst, being chronic.  My neuro told me it was most likely because the imitrex was causing the roubound headaches and rapid cycling.  I was crushed because it was the only thing that had given me any normalcy in my life.  I did know that taking imitrex every day coudn't be good for me.  
He put me on Lithium.  I was really apprehensive because of the stigma associated with this and major mental illness.  Really a stupid thing to worry about if it's going to help.  600mg a day which is half the dose they give for Bi-Polar.  After one day, they disappeared.  No noticeable side affects except maybe a little fogginess.  Hell, I can live with a little fog.  Always liked San Francisco anyhow.  Does anyone have experience with Lithium working a second time after you stop using it and then start again?  I know with this damn disease what works for one episode doesn't always work for the next.  Any other comments about Lithium?
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Lenny
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Re: It's all abouit Lithium
« Reply #1 on: Sep 16th, 2002, 2:57pm »
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Hi Joe,
 My name is Lenny,boy can i relate to the imatrix (rebounds) its the only thing that aborts the beast for me aswell. I am cronic and i suffer day and night.When i was taking Lithium and Verapamil together as a prev.throughout the day i was doing just fine.Approx. 1-year ago i went 66 days without the beast visiting me and was convinced that my cycle was done so i came off of my meds. against my docters advice ( kudrow )he tried to convince me that i was still in cycle( i was convinced that they were gone ).Big mistake,they came back if i recall correctly 24-48 hours later.I jumped back on the Lith. and Ver. but this time they did not help,appr. a month later they started to help. About 6-months ago they had to take me off of the Lithium ( my lithium levels were too low )so now nothing is working for me ( prev. wise )on an average i inject myself 3-4 times a day ( i hate it because the rebounds do come back). Dr. Kudrow gave me this new med. last wed. called "Frova" he wanted me to take it 2-hours before bed( its in the same family as Imatrix )it did not help.As a matter of fact Now my attacks seem to last double the norm. ( and i only took it for 2- nights).On friday 9-13-02 i was awaken by the beast at 4:20a.m. with a 10 and stayed a 10 untill around noon time,the s.o.b. finally left me at 4:00 p.m.( i injected myself with the Imatrix at 8:00a.m. and 9:30a.m.with no releif whatsoever)the reason i waited so long is that Kudrow warned me that if i use the imatrix with the frova that there is a good chance of having a stroke( thank god that did not happen )all he could do friday was to tell my ex-wife to take me to the E.R.which i refused.  Imatrix has never ever failed to give me releif untill this past friday ( i can only hope its due to the frova that was fresh in my system). I want to apologize for my long note( i come to this site 3-4 times a week just to read but i never post, i guess i got carried away. Also speak to your dr. regarding having your blood work for the lithium. Hopefully this note will find you in good spirits and with many PFDAN to come.     your cluster bro,
           Lenny   ;D
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yes a newbie,unfortunately not to the beast!!!Chronic - Clusterhead
Ueli
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Imitrex "rebounds"
« Reply #2 on: Sep 16th, 2002, 3:22pm »
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To those who believe in rebounds from Imitrex I strongly recommend to read the relevant articles from the OUCH library:
 
http://www.clusterheadaches.org/library/medications/imitrex_rebound.htm
 
 
PFNADs
Ueli
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Re: It's all abouit Lithium
« Reply #3 on: Sep 16th, 2002, 3:27pm »
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Lenny - Sorry to hear of your experience.  Being PF can be such an illusion.  On July 8, '02 I started a new regimen (under Neuro supervision) of lithium, verapamil, and ergotamine (1 ea. together in AM).  Had last episode in 3rd week of July.  The doc wanted to see me in early September, but I declined because I saw no reason until a much more extended period of PF days.  Went camping over Labor day weekend and was not religious about meds - could feel the beast lurking after a day and a half.  Don't know how long I'll go on this run of meds, but as long as it works....  Guess I'll give it a year or so.  Just the fear of going off, and then the potential of having the combo not be effective is enough for me.
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Re: It's all abouit Lithium
« Reply #4 on: Sep 16th, 2002, 5:50pm »
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thank's for the info U,  thought i was having rebounds from to much trex during my last cycle.                     ...........2late
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Re: It's all abouit Lithium
« Reply #5 on: Sep 16th, 2002, 6:11pm »
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Joe,
 
Was on lithium last year - 1200 mgs - and it worked (in conjunction with verapamil), but with side effects - felt like a zombie, but was pain free.  When I used the same dose a few weeks ago at the direction fo my neuro, I went toxic on it - constant nausea and vomiting and it wasn't helping the CH's at all.  I was taken off it and am now on verapamil and catapres and each day seems to get better, with a few major and minor breakthroughs.  Good luck.  May it WILL work for you the second time around!  - Jim R
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jonny
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Re: It's all abouit Lithium
« Reply #6 on: Sep 17th, 2002, 1:41am »
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Lith, Verap every single day for over a decade.
 
Life is grand for this 27 yr chronic.
 
................................jonny
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