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madaline
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Neurontin
« on: Dec 10th, 2006, 6:37pm »
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Hi, A 10 year chronic cluster person, tried most meds., some worked at different times for a period of times then stopped being effective. Have been on Verapamil for about two years, and they have greatly reduced the daytime episodes, but I still have not slept one night in all that time, thru the nite. Now I am trying the generic Neurontin with the Ver. to try to get thru a nite pain free. Has anyone tried it?  Any luck?  Waiting to hear.  Madaline.
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chopmyheadoff
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Re: Neurontin
« Reply #1 on: Dec 11th, 2006, 10:03am »
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hi there, i have never tried neurotonin but i have virtually complete relief with verapamil  Smiley
 
what dose are you taking.
you mention that is is working a bit, have you tried upping the dose (under doctors supervision obviously)
 
pain free wishes.
 
chopp
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Re: Neurontin
« Reply #2 on: Dec 11th, 2006, 12:50pm »
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I tried it briefly. It made me feel like a zombie so I quit before I noticed if it was working.
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Re: Neurontin
« Reply #3 on: Dec 11th, 2006, 3:44pm »
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  madaline, I was on both verap and nuerontin at the same time. we had pushed the verap to over 900mgs. a day and then started adding in the nuerontin until i was at a 1200 or i may have topped at 1600 mgs. a day.
 
  Neither of these drugs ever worked for me and I have long since tapered back off, but i don't want you to draw conclusions from my experience! i beleive that if you are commited to fighting this beast you need to try all reasonable solutions so i have. i just wanted you to know that you can mix the two at fairly high doses without too much to worry about. both of these drugs have a way of letting you know when you can't go any higher!  
 
  Best of luck......Tim
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madaline
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Re: Neurontin
« Reply #4 on: Dec 12th, 2006, 3:45am »
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Thanks for the feedback. I have tried Verapamil up to 720 mg. but am now varying between 480mg. or 360mg. I tried 300mg. of the neurontin and walked like a drunk for about 17 hours. Actually I could not even really get out of bed for all those hours. Now I tried 100mg. for the last two nights. Not much effect. Will try it for a few more nights and if no change, will try 200mg. but I have a feeling that that dose will make me unfunctionable. We'll see. I'll let you know. wishing you all well.    Madaline
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Re: Neurontin
« Reply #5 on: Dec 12th, 2006, 9:26am »
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Neuronitn made me sick.
 
Have you tried melatonin for the night time hits?
Many of us have found it to be a great preventative for nocturnal attacks.
 
this is empirically validated as well.
I'll find the link later
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Re: Neurontin
« Reply #6 on: Dec 13th, 2006, 12:51am »
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I've been taking Neurontin since Oct 31st 2006 and I have to say  that it's been GREAT!
yes, it took getting use to at the beginning. When I started, one pill knocked me out all night! Now I take 8 pills a day ( 2 pills 4 times a day ) that's 2400MG. I haven't had a headache, a shadow, NOTHING! I use to be a very light sleeper, with periods of insomnia but now I sleep like the dead. It's different, but not a bad thing. I had several side effects when I first started ( body aches, fuzzy thinking, feeling sleepy ) but they all went away within 10 days or so.  
Give it a try. It's worked like a charm for me!
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Re: Neurontin
« Reply #7 on: Dec 14th, 2006, 11:58am »
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i'm functioning on 4800mg of nuerontin and 720mg of verap. It's true what they say your body tells you when your dose is to high. hope it brings you relief.
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Re: Neurontin
« Reply #8 on: Dec 16th, 2006, 12:38am »
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Madaline,
 
Hope the posts have not spooked you on Neurontin (gabapentin).  It has been a God send for me....  I'm a 10 year episodic and two year chronic and gabapentin has been the first good med that really works
 
Not sure what your doc has given you for an Rx but I started out at 900 mg TID as prescribed by the neuro's at NIH.  
 
 
It worked great with no hits and the only side effect was a two martini buzz...  not that shabby.  I also am a big time user of 100% O2 as a first line of defense as an abortive
  It works too.
 
Please let me know how you're doing on Neurontin (gabapentin)... The other prophies did nothing for me except for prednesone
 
v/r, batch
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Re: Neurontin
« Reply #9 on: Dec 16th, 2006, 9:01am »
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No luck with neurontin
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madaline
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Re: Neurontin
« Reply #10 on: Dec 20th, 2006, 2:51am »
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Yes, I tried megadoses of melatonin and it did nothing for me. I went off the Neurontin because the 100mg. did nothing (the 300mg. made me a zombie). But all  your encouragement has made me rethink it; I will start tonight with 100mg. again and then up it to 200mg. and see what happens. I will let you all know. Thanks again for all the encouragement. PF times to everyone. Madaline
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Re: Neurontin
« Reply #11 on: Dec 25th, 2006, 4:25am »
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Hey There,
 
Neurontin gave me some really bad nightmares.  Other than that I was never really on it long enough to know Two weeks and they took me off it.  Good Luck and Good vibes
 
Your Brother in Pain
 
MYNM156
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Re: Neurontin
« Reply #12 on: Dec 25th, 2006, 11:53am »
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good luck.  It's worth another try.  Maybe stagger the 100 every 2 hours, and then 200 at bed time?
 
I've read that neurontin can make other meds work better. So you may or may not want to take it at the same time as other meds, depending on what you take.
 
What is the amount your dr or neuro wants you to eventually reach?  What other meds do you take.
 
I apologize for asking.  I'm sure you answered these questions already and i've missed it.
 
Charlotte
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madaline
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Re: Neurontin
« Reply #13 on: Dec 29th, 2006, 3:20am »
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Actually, I took the neurontin, 100mg. for four nights and then stopped because it did not prevent me from awakening with the pain and when I did awaken, it felt like my brain was floating around in my head. Then the next few nights (tonight is the fifth night now) I have been having major attacks where my usual abortive of Excedrin and caffeinated drinks are not working at all. I take 369-480mgs. of Verapamil a night (SR) for about three years now. And I use Zomig spray as an abortive during these attacks where nothing else works. I also started on Prednisone yesterday and can take it for three to four days without tapering off it. I am hoping this works. It worked for me once before. I have not slept in five nights; I wait in agony for about 5 hours before I use the zomig, always hoping that the caffeine will work, but it has not this week, so.....nightmarish week.  Thanks for communicating; talking to those who have "been there" helps keep one's sanity. It is 3:15AM and I am waiting once again, for the pain to subside. PF times to everyone.   Madaline
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