Clusterheadaches.com Message Board


    
      
        Clusterheadaches.com Message Board
        (http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi)
      

        New Message Board Archives >> 2004 Posts >> Have been prescribed Neurontin, along with
        
(Message started by: Donna H. on Sep 15^th, 2004, 4:37pm)

Title: Have been prescribed Neurontin, along with
Post by Donna H. on Sep 15^th, 2004, 4:37pm

Oxycodone and Valium for one week for the pain of a flair-up of two bulged discs and spinal stenosis.

I am looking for comments and info from people who have used Neurontin or have knowlege of accurate info from people who have used it.

Thanks

Title: Re: Have been prescribed Neurontin, along with
Post by vig on Sep 15^th, 2004, 4:38pm

May 13, 2004 -- Pfizer is fined $430 million for illegal marketing practices surrounding the drug Neurontin. The unprecedented fine comes after the company admitted that the epilepsy drug was promoted for several unapproved uses, including migraines, chronic pain and bipolar disease.

Title: Re: Have been prescribed Neurontin, along with
Post by IndianaJohn on Sep 15^th, 2004, 5:18pm

I used 300 mg of neurontin nightly for CH. It made my CH a little worse. I have read threads where some have had success with it up to dosages of 900mg. I was on it for a week then stopped.

Didn't care for it much.

Title: Re: Have been prescribed Neurontin, along with
Post by kimh on Sep 15^th, 2004, 5:26pm

Hey Donna,

I took Neurontin for Clusters. I'm thinking by your thread that it is prescribed to you for your back. I can't comment on the success for back troubles. When I was on it, i did a search of the archives and found some posts from people who have used it for a number of things - interesting reading.

There is one common factor i've observed about this drug and that is that the people who have used it with success were usually on a high dose.

Best luck to you and PFDAN**** :)

Title: Re: Have been prescribed Neurontin, along with
Post by stevegeebe on Sep 15^th, 2004, 5:42pm

After a six month cycle last year, my neuro changed my med cocktail. Cafergot, 720mg of Verapamil and 1800mg of Neurontin per day. Cycle ended a few weeks later.

Not sure if if was on its way out anyway. But like Kim said, the dosage was high.

Good luck Donna.

Steve G

Title: Re: Have been prescribed Neurontin, along with
Post by Bec on Sep 15^th, 2004, 5:45pm

((( Donna )))

First of I am sorry to hear you are in pain.

I was on 4800mg's of neurontin, for 5 months for ch( and no for anyone reading this, there is not an extra zero). I didn't really have any problems while on it, but it didn't work either.The only thing that I will tell you is make sure you wean on and off of it very slowly. I have my fingers crossed that the meds work for you and that you are soon out of pain.
I wish I could be of more help.
hugs
bec

Title: Re: Have been prescribed Neurontin, along with
Post by Margi on Sep 15^th, 2004, 5:46pm

Donna, Ree's hubby Dave uses (or used, past tense?) neurontin for his clusters. I know you're not using it for the same reason but I think she says that it really did help him sleep.

Watch out with that oxy, gal - scary stuff. You know that.

So sorry you're on a bumpy ride right now - prayers going up for you.
Hugs
Margi

Title: Re: Have been prescribed Neurontin, along with
Post by Tiannia on Sep 15^th, 2004, 6:34pm

on 09/15/04 at 16:38:29, vig wrote:

Dont tell me this. 600mg of Neurontin a day (300 am 300pm) is currently what i am on. Was on 400 at night and it did nothing and I have only bee on the 600 for about a week and have been getting hit worse. :-/ But I think it is just an upswing in my cycle like I get anyway, with ot without the drug. But at least it is not the side effects that I had with Topomax.

Title: Re: Have been prescribed Neurontin, along with
Post by nani on Sep 15^th, 2004, 6:39pm

I use Neurontin 300mg up to 3X day for chronic clusters. I use it only as needed when they stay about kip 5 -6 but take it 3X day when I'm getting higher kips. Like the last two weeks. I started 900 mgs daily 4 days ago and I've already had relief from the intensity. I've only used it for CH and as a pain drug after brain surgery. It works for me. But man - over 4000mgs a day! :o

Title: Re: Have been prescribed Neurontin, along with
Post by Ree on Sep 15^th, 2004, 7:00pm

Donna H... you can call us if you want to know anything about Neurontin. It is the only drug that Dave has had any success with. He takes 900mg that's one 3 times a day... to start and then sometimes moves up to 2 caps 3 times a day during the peek of his cycle (1800)mgs... and i think you can take up to 2400mgs per day. He has halted the start of a cycle by starting the neurontin after getting hit. He held it off for about 6 months. It lessens the severity of the cycle somewhat once its going full throttle. During Dave's cycle there always comes a time when nothing works and thats when I know it will be spiraling downward after that. I will pm you our phone number if you ever want to talk to him or me about it... he is pretty neurontin savy... and is on vacation this week. love to you Ree

Title: Re: Have been prescribed Neurontin, along with
Post by Ree on Sep 15^th, 2004, 7:12pm

Hey Cootie is on Neurontin also for a back problem....I believe... ree

Title: Re: Have been prescribed Neurontin, along with
Post by Donna H. on Sep 15^th, 2004, 7:16pm

Thanks all for your comments. I've heard some bad stories about Neurontin, but according to my doc, it's the attorneys' trying to make cases when it wasn't used for the specific symptoms that the FDA listed it for.

From what I've read in info gathering, doses start at 100 mg (300 being the most often used as a start) up to 2600 mg. It warns against using more.

As with anything new, I a bit leary because I've become allergic to a few things lately........like Vioxx (works wonders on arthritis, but gave me an ulcer), and Keflex gave me an entire lobster-red body rash.

Hope to still hear from Ree..oooh she just posted. Yes I will call you and thanks so much, sweety.

Margi.....you do know how much I RESPECT (?) anything that starts with Oxy. It's only for one week so I'm willing to give it that much time.....only. Thanks for the wake up call, tho. I hope others are listening too.

Love you guys and gals,
Donna H

Title: Re: Have been prescribed Neurontin, along with
Post by purpleydog on Sep 15^th, 2004, 7:17pm

I used 2400 mgs of neurontin daily several years ago for migraine, and not only did it put me in a fog, but my IQ points took a major hit. And my short term memory was pretty much non-existent . It was seriously affecting my ability to do my job. I was on it for about 9 weeks or so, then I had to stop.

It can be used to treat chronic pain. I know it didn't help me, in fact, I don't know anyone who has tried it that said it worked for them. But, you may be different. It does have somewhat of a sedating effect, so be careful at first driving, etc. Hope this helps, Donna.

pd

Title: Re: Have been prescribed Neurontin, along with
Post by cootie on Sep 15^th, 2004, 7:40pm

Yes Ree's rite I was on neurontin for a while......for back problems that became chronic and arthritis and bad disc crap. At first it sorta made me mildly loopey......figured that'd go away soon. Then I had some reactions to it.....doc had me get off it for a few weeks then start back up. Sheesh.......I reacted worse to it and couldn't even walk or stand up......scared the heck out of me !! Started t develope big red splotches all over my face and muscles seem to sag.....Brad noticed it and it freaked us both out ! Just seem'd to get worse so I of course stopped takeing it. When I did stop it I had alot of strange muscle spasms that were almost like mild seizures.....that really flipped me out. Doc said not many have major side effects but I did !!!!!! Plus my back was takein a worse route and it wasn't working for it. "IF" your careful you can manage pain with the oxycodone.....I will only take it so many days in a row.....doc has me alternate with Ultrum which helps if I catch flareups in time and it's not a narcotic. Doesn't get rid of pain totally but tames it down a bit. And I don't take anything DAILY.......I choose not to go that route . Good luck to ya......jus be careful with the meds.......Pammie the crap back

Title: Re: Have been prescribed Neurontin, along with
Post by Donna H. on Sep 15^th, 2004, 8:09pm

Pam....how many mgs. were you on X how often? This is the kind of thing I'm worried about. Thanks for going into details for me. I need to plan this right so that I don't lose my job.

Title: Re: Have been prescribed Neurontin, along with
Post by clarence on Sep 16^th, 2004, 4:43am

I was on Neurontin for 2-2and a half years - 900mg/once a day at bed for the clusters. My doc prescribed it as a preventative. It worked for me in the sense that I believe it extended the time between cycles, and made the pain in cycle less intense.
I am episodic, and when I moved to Edinburgh, the Neuro had me ween off, told me I should only be taking it when I get hit...But gave me no instructions. Now that I am in cycle again, instead of the Neurontin he has given me methysergide [smiley=huh.gif], which I do not like and is not helping at all. I would go on it again, and have actually asked to, because I had more success with that than anything else.
Building up and weening off is important - if I accidentally missed a dose it would really mess me up. I felt foggy, groggy, and really really hungry. When I came of finally, I ate like crazy.

Hope this helps,

Casey

Title: Re: Have been prescribed Neurontin, along with
Post by rubberplant on Sep 16^th, 2004, 7:38am

on 09/15/04 at 17:45:42, Bec wrote:

((( Donna )))
I was on 4800mg's of neurontin, for 5 months for ch( and no for anyone reading this, there is not an extra zero).

I'm on 900mg three times a day as a top up for my Carbemezepine for my epilepsy (starting to cut down). Neurontin is apparently safe right upto and exceeding these levels. So it's safe but I have suffered CH's whilst on Neurontin.

If a drug is not cleared for use for certain conditions I would enter into serious conversation with my doc.

James

Title: Re: Have been prescribed Neurontin, along with
Post by don on Sep 16^th, 2004, 8:00am

Quote:

The unprecedented fine comes after the company admitted that the epilepsy drug was promoted for several unapproved uses, including migraines, chronic pain and bipolar disease.

I would want to broach that subject with my Doc.

Title: Re: Have been prescribed Neurontin, along with
Post by sailpappy on Sep 16^th, 2004, 8:22am

;;DHello Ms. Donna!
Neurontin has been in the news lately because of a higher than normal Suicide rate due to it being prescribed for conditions other than what it was intended for! Seizure Control in Epileptics. I remember when I took it back in the 70's it turned me into a zombie!
There was a big write up about how the company was pushing Doctors to prescribe it for various uses other than seizure control.
http://www.personal-injury-lawyer-referral.com/pages/neurontin_side_effects.html
I have heard that it works well for treatment of shingles also. But the Drug Company was giving all kinds of incentives to use it for conditions which are in no way connected to the metobolic action of this medication.
OxyContin is a wonder drug, if you don't suffer from a guilt syndrome for taking it or have problems controlling yourself as far as staying within the prescribed dosage. Like you have told me many times, if it helps and you can control any addictive tendencies you might have, take it. Take a stool softner also or you will have constipation problems that are beyond your imagination, also you might have some sleep problems until; you get used to it, it will Hype your mind up, Trazadone is a good sleep aid to help with that!
Imagine, a Grandpa/sailor giving a nurse advise about medicine??? Love Ya Sis! Pappy

Title: Re: Have been prescribed Neurontin, along with
Post by Donna H. on Sep 16^th, 2004, 8:55am

My favorite Sailor!! I'm thrilled to hear from you here. I'll be home for the next two weeks......please give me a call.

I've read the bad publicity about Neurontin and I did ask my doc about it. He says, in his opinion, that problems are one in a million and that attorneys have made a circus out of the few cases where people were taking it for things not on the "list".

That's why I am asking my friends for any info that they might have on this drug.

I have preached many times about addiction, and when I say I have respect for OxyContin, hydrocodone, etc., I mean it. I won't be taking it without the strictest partnership with a doc that cares about me.

I took the first one last night and this morning I feel a wee bit "slow", if you know what I mean. It's hard to describe at this point. Maybe it's my imagination. I'll keep you all posted.