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E-Double
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anyone use NEURONTIN????
« on: Jul 14th, 2004, 1:06pm » |
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Hi all,
Well I kept an appointment that i had with doctor # 3.Think I hit the jackpot
Had the great personality of doc. #1 and knoweldge of doc #2. So I think I will stick with this guy. Yeah doc #3
He also stock piled me with meds for the next one just incase eventhough I am still in cycle (hope ending but don't know what that should be or feel like)
Anyway...........
I am currently (recent switch) on verapamil and split doses of Imitrex inj. & O2 to abort. (Love the O2 and thanks for the push everyone) Also started taking melatonin past 4 days and atleast I'm sleeping pretty much through the night(finally  )
New doctor completely agrees with what I have been doing now, but also suggested that we try neurontin.
I read all the info on it and some old (99-2001)posts regarding it but wondered if anyone is on such a cocktail now: Verap 240 + neurontin 300
Thanks in advance,
Eric
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UN_SOLVED
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Re: anyone use NEURONTIN????
« Reply #1 on: Jul 14th, 2004, 5:10pm » |
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Neurontin made me worse. Hope it works better for you. Keep us posted on how well it works.
Goodluck & PF WISHES,
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Kris_in_SJ
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Re: anyone use NEURONTIN????
« Reply #2 on: Jul 14th, 2004, 9:08pm » |
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I haven't tried it for clusters, but was prescribed it (for a minute) by a rehab doc a few years ago when I injured a nerve in my hip. Gave me the worse case of the "hershey squirts" I'd ever had - lasted for 5 days! When I could finally get off the pot, I called it quits!
So .... it might work well for clusters, but you need to be aware of the side effects that are possible! *smile*
Kris
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don
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Re: anyone use NEURONTIN????
« Reply #3 on: Jul 14th, 2004, 10:00pm » |
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Neuronton did nothing for my CH.
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Samantha_Smith
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Re: anyone use NEURONTIN????
« Reply #4 on: Jul 14th, 2004, 11:22pm » |
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I may be mistaken or thinking of another law suit, but the makers of Neurontin were just sued for marketing the product for unapproved, untested off-label uses such as headaches and mental illness (who knows what else.) Neurontin was originally developed for seizures but the drug company got greedy and wanted the big bucks so they told the doc's that it would cure everything from constipation to cancer (a little sarcasm at the end there.) Please correct me if I'm wrong about the suit. Yes, oftentimes one drug that is developed for one condition (heart problems) will just happen to help another condition (CH) such as Veraprimil. Nope Neurontin never helped me. But who knows....everyone is different. Most people don't respond to Botox (talking about off label usage) but it works great for me. Ya gotta do what ya gotta do. Good luck. Hang in there!
Samantha
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| « Last Edit: Jul 14th, 2004, 11:22pm by Samantha_Smith » |
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E-Double
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Re: anyone use NEURONTIN????
« Reply #5 on: Jul 15th, 2004, 7:24am » |
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on Jul 14th, 2004, 11:22pm, Samantha_Smith wrote:I may be mistaken or thinking of another law suit, but the makers of Neurontin were just sued for marketing the product for unapproved, untested off-label uses such as headaches and mental illness (who knows what else.) Neurontin was originally developed for seizures but the drug company got greedy and wanted the big bucks so they told the doc's that it would cure everything from constipation to cancer (a little sarcasm at the end there.) Please correct me if I'm wrong about the suit. Yes, oftentimes one drug that is developed for one condition (heart problems) will just happen to help another condition (CH) such as Veraprimil. Nope Neurontin never helped me. But who knows....everyone is different. Most people don't respond to Botox (talking about off label usage) but it works great for me. Ya gotta do what ya gotta do. Good luck. Hang in there!
Samantha |
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I read an article about that law suit too. It is in the same "family" as depakote" without the toxicity and studies have been smaller.
We'll see what happens? For now i might wait a week and stay status quo with the verap. if "beast" starts smacking me around hard again (knock on wood not too bad of a couple days) then will try the neurontin as well.
Thanks again 
eric
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Thorns
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Re: anyone use NEURONTIN????
« Reply #6 on: Jul 15th, 2004, 11:34am » |
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I have used Neurontin in the past. It definitely helped. However, I was on a really high dose 1800 mg/day before it kicked in. I didn't like the way it made me feel and it was too expensive to keep up after I lost my insurance.
Just the other day I saw a class action lawsuit ad on the TV for anyone who has attempted suicide or lost a loved one while on Neurontin. Not something I would recommend for the 'suicide headache'. My 2 cents.
~Thorns
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Thorns
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Re: anyone use NEURONTIN????
« Reply #7 on: Jul 15th, 2004, 11:37am » |
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on Jul 15th, 2004, 11:34am, Thorns wrote:| Just the other day I saw a class action lawsuit ad on the TV for anyone who has attempted suicide or lost a loved one while on Neurontin. |
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Sorry... I meant anyone who had lost a loved that had commited suicide while they were taking Neurontin.
~Thorns
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Kris_in_SJ
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Re: anyone use NEURONTIN????
« Reply #8 on: Jul 15th, 2004, 7:36pm » |
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Glad you've had a couple of "not too bad" days. It's about time, isn't it?!? I think I'd be tempted to ask the doc to ramp up the Verap before I tried a drug with the rep this one is getting. Just a thought ....
Kris
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E-Double
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Re: anyone use NEURONTIN????
« Reply #9 on: Jul 15th, 2004, 8:27pm » |
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Quote:| I think I'd be tempted to ask the doc to ramp up the Verap |
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Is that what we are supposed to do?
We are supposed to push it even when hopefully beginning to feel better?
(Sorry naive: first cycle on meds. crazy huh?!! and still learning.)
Doc did say to push the verap next week
(actually tomorrow) if no ill effects,
but I wonder the same thing as far as the neurontin question...
Why not stay status quo if things are on the up.
Advice from you vets...............
Thanks and totally want to meet you all!!!!!
Eric
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don
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Re: anyone use NEURONTIN????
« Reply #10 on: Jul 15th, 2004, 9:30pm » |
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What is your current dosage of verapamil?
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E-Double
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Re: anyone use NEURONTIN????
« Reply #11 on: Jul 15th, 2004, 10:20pm » |
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on Jul 15th, 2004, 9:30pm, don wrote:| What is your current dosage of verapamil? |
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240 mg and was told if no bad side effects to push it to 480mg.
Thing is I haven't had a major hit since monday.
Had a few pacers and actually had a super mild day yesterday for the first time in 2 months.
I guess that is why I asked about changing meds or adding?
I also finally found a neuro that I think is right!
Doc 1 sweet but unaccessible and wrong plan for me.
Doc 2 her associate. uncomfortable and dismissive
Doc 3(NYheadache center) had what seemed like right plan of action (verapamil & obviously get off the depakote wasn't doing anything for myCH's) but poor bedside manner
Doc 4 has great bedside manner spent almost 2.5 hours with me and agreed with the med changes just wanted to try the neurontin @ night to wipe out the night timers, however since I've been taking melatonin I haven't had one real hit. Was jolted 1x with a kip6. He did suggest that I stay @ the same level of verapamil. Those were the only differences.
oh yeah!!! He also stock piled me with Pred, imitrex, scripts for verap, etc just in case and to have and to be prepared for the next cycle, whenever that may be.
That to me appears to be a solid doc.
So here it goes I am still learning and somewhat confused but keep trying and learning and surviving.
Thank you all for making me more educated and helping me (and my supporters) keep that positve mental attitude.
Eric
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Re: anyone use NEURONTIN????
« Reply #12 on: Jul 15th, 2004, 11:54pm » |
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I use it all the time. I have chronic clusters and while it doesn't always take all the pain away - I find it manageable. If I take one the minute I start to feel a bad one comingI can make it through. I tried it in desperation one day because I had some left over after I had brain surgery for a ruptured aneurysm. The docs told me I could use it for pain and it was the ONLY thing that worked. Good luck!
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Re: anyone use NEURONTIN????
« Reply #13 on: Jul 16th, 2004, 4:29am » |
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on Jul 15th, 2004, 10:20pm, E-Double wrote:
240 mg and was told if no bad side effects to push it to 480mg.
Thing is I haven't had a major hit since monday.
Had a few pacers and actually had a super mild day yesterday for the first time in 2 months.
I guess that is why I asked about changing meds or adding?
I also finally found a neuro that I think is right!
Doc 1 sweet but unaccessible and wrong plan for me.
Doc 2 her associate. uncomfortable and dismissive
Doc 3(NYheadache center) had what seemed like right plan of action (verapamil & obviously get off the depakote wasn't doing anything for myCH's) but poor bedside manner
Doc 4 has great bedside manner spent almost 2.5 hours with me and agreed with the med changes just wanted to try the neurontin @ night to wipe out the night timers, however since I've been taking melatonin I haven't had one real hit. Was jolted 1x with a kip6. He did suggest that I stay @ the same level of verapamil. Those were the only differences.
oh yeah!!! He also stock piled me with Pred, imitrex, scripts for verap, etc just in case and to have and to be prepared for the next cycle, whenever that may be.
That to me appears to be a solid doc.
So here it goes I am still learning and somewhat confused but keep trying and learning and surviving.
Thank you all for making me more educated and helping me (and my supporters) keep that positve mental attitude.
Eric |
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You may be finally coming to the end of your cycle... Or maybe the meds are working. Upping the verap isn't gonna hurt unless it lowers your BP too much (Stated in accordance with what your doc advised...  )
But personally I don't like taking meds when I don't have to. If you're doing good, but still having a few breakthrough's upping the verap might help that. But Personally I would rather stick with the melatonin rather than the neurotonin if it's working for you. Melatonin works wonders for alot of us.
Do what works, and if you are totally PF for a month, ask the doc about weaning off the verap and everything else and get back to your life. If you start to wean off and start getting hits again... Well you know then it's NOT time to quit the meds.
At least your getting some relief! Happy dayz!
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E-Double
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Re: anyone use NEURONTIN????
« Reply #14 on: Jul 16th, 2004, 6:24am » |
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on Jul 16th, 2004, 4:29am, Superpain wrote:
You may be finally coming to the end of your cycle... Or maybe the meds are working. Upping the verap isn't gonna hurt unless it lowers your BP too much (Stated in accordance with what your doc advised... )
But personally I don't like taking meds when I don't have to. If you're doing good, but still having a few breakthrough's upping the verap might help that. But Personally I would rather stick with the melatonin rather than the neurotonin if it's working for you. Melatonin works wonders for alot of us.
Do what works, and if you are totally PF for a month, ask the doc about weaning off the verap and everything else and get back to your life. If you start to wean off and start getting hits again... Well you know then it's NOT time to quit the meds.
At least your getting some relief! Happy dayz! |
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Sounds good to me!!
I guess I kinda forgot what it felt like to feel good (NOT WHINING) and didn't want to mess with what might or might not be.....
Tis true: Actually been HAPPY DAYS... continue!
Thanks
E
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Re: anyone use NEURONTIN????
« Reply #15 on: Jul 18th, 2004, 5:57am » |
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Neurontin, when I followed the dosage and titrated up for about 6 weeks reduced my CH attacks from 4-5 attacks daily to only 2. I would even have a few CH free days each month. I did have to go up on my dose every 3 months or so. Now I am using a methadone therapy with some other meds and get (at my best 3-4 attacks weekly and at my worst 10 - 12 attacks each week) The variation usually occurs due to missed doses, not enough sleep, poor diet etc. I have heard about the lawsuit also, however for me Neurontin gave me the very least side effects of all the other types of anti- siezure type meds I have tried. I have ben chronic about 10 years. Good Luck. M.Lieber
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Re: anyone use NEURONTIN????
« Reply #16 on: Jul 20th, 2004, 12:08pm » |
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I'd be very careful if you do try the Neurontin. My father ( a sufferer of four years) was on it and went through some violent mood swings ranging from suicidal depression to homicidal rage (within the space of a few hours on occasion). He's normally a very easygoing person, so we knew the medication was affecting him. After weaning off the stuff he finally returned to normal. Now he's on Verap and Topa and has been PF since March. I'm on Topa and aside from a few shadows have been PF since May. My neuro (whom I trust) said a lot of what the other posters have been saying about Neurontin and was very happy to hear that my earlier doctors had never started me on it. PF wishes to everyone!
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IndianaJohn
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Re: anyone use NEURONTIN????
« Reply #17 on: Jul 23rd, 2004, 12:49pm » |
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Hi all, Just visited my GP and he obviously eduacted himself quite a bit about CH (much to my surprise!). He gave me some samples of neurontin to try to kill the cycle. He gave me a sample pack of three 600mg tablets to cut in half and take before bedtime (six doses total). I told him about the bacd reaction to depakote that I had and he said to try it. I'm going to give it a try, but if it does me like depakote did, it will wind up in the sewar system. At this point I'm willing to try anything. I'm so damn tired of being tired.
John
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kimh
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Re: anyone use NEURONTIN????
« Reply #18 on: Jul 23rd, 2004, 5:13pm » |
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Hey Eric,
Last two cycles i took neurontin. Honestly - can't tell if worked or cycle just ended. It had a drastic affect on my memory skills, and i felt like i was in a fog while on it.
I've read numerous posts here from folks who were prescribed it and the ones who posted success were almost all on HIGH dosages.
Best luck and keep posted on results.
Well wishes,
kim
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IndianaJohn
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Re: anyone use NEURONTIN????
« Reply #19 on: Jul 26th, 2004, 8:12pm » |
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Hi Everyone,
Well I tried the Neurontin and it did seem to help, but I was a total zombie from it. Doc says I can't up my verap cause my BP is low already. It's 7:12 PM and I just had a K9 attack right before dinner. I used the Neurontin on Friday and was out of it Saturday. Wasn't sure if it was worth it. Pain vs. the fog. But after this, I definately pick fog over pain. I have enough for one week so I will try it for at least that long. I just can't function very well on it.
Do the side effects get any better?
If this doesn't work, I think I will try growing the shrooms. I'm so tired of this I'll try anything. My wife lost her job so getting O2 would probably cost too much right now.
I'm starting to get really desperate...
John
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E-Double
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Re: anyone use NEURONTIN????
« Reply #20 on: Jul 26th, 2004, 10:02pm » |
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couldn't tell ya about the side effects.
I decided to not try it considering things lightened up for me.
Last I posted on this thread I had such a tolerable week and then last week I started getting hit again although not killer.
I upped the verapamil and continued with the melatonin so at least I am sleeping. That's the biggest thing for me getting rid of the night-monsters and being able to sort of function during the day.
Now I've been "relatively" pain free for I guess 2 weeks with only a few hits here and there but mostly light shadows and the occasional neck grinder.
Maybe next cycle (so cryptic having to think about the next one lol) I will try the neurontin.
Good luck to you
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