gabapentin (neurontin) question for those who take it

Emmi! what a great thread!!

 

I'm curious about this too.  I am taking 25mg of clobazam (used for my seizures. but it's also an anti-anxiety).  The drug is a benzodiazapine.  Or mild tranquilizer.  VERY, VERY addictive.  This class of drugs basically replaces the brain's natural source of GABA.  One of the "feel good" hormones that helps with anxiety etc....

 

So I'm tapering off of this medication because of its addictive nature.  I've been on it for 6 years which is a really long time.  Especially at these high doses.  In order to help my brain remake the GABA on its own, I have to taper super slow.  2.5mg every 8-10 weeks!  So I have a long way to go.  I've already come down 10mg since last June. 

 

I've been considering adding supplimental GABA to my regime as well. Just to make the taper easier on me and maybe faster.  I get a lot of anxiety 2 weeks after I taper down.  It's horrible.  This stuff is evil.  Never take a benzodiazapine folks.... I'm so angry I was put on it to begin with.  I had no idea what I was getting into....

 

So I would also love to hear how others find this GABA stuff working for them!  Emmi, I'm glad you brought this up! Interesting that it hasn't helped your anxiety..... Hmmmmm.

 

Ginny

 

 

Hi Victoria!

 

Thanks for the great information!!!  The LAST thing I need is to gain weight from another med, or have more vivid and intense dreams.  I'm a dreaming nut-case...Must be the BENZO!!!!!!  Hehehe...

 

So that is very interesting to know that Lyrica might be a better alternative.  It's used quite frequently for Fibro.  The gals in the fibro forum talk about it a lot.  Some have success on it, others don't.  Pretty much par for anything we take, right!

 

I was taken off my benzo cold turkey last May.  I was in the seizure monitoring unit at the hospital for 5 days.  They wanted to see how many and how severe my seizures were when I was off the medication.  GREAT LEAPIN' LIZZARDS.  I was a disaster on the 2nd day.  I went from 35mg to 0.  I thought I was going to lose my mind. What a horrible situation.  The nurses didn't even consult the neurologist.  They gave me my meds to take again.  It was that bad..... So I can TOTALLY relate to your cold turkey taper!! 

 

BENZODIAZAPINES =

 

That's from me and Victoria, everyone!

 

Anyone else want to chime in on Neurontin/GABA?

 

Ginny

Ginny! 35MG?? I was only on 10.... I cant even imagine what you went through! <<<HUG>>> Bless your heart. Praise God that He got us through that.

So funny Rosie mentioned the "nest". My daughter Lindsey calls mine the "Rabbit Hole". Sometimes she will go in and get my pillows and heating pad ready for me. She knows exactly how they need to be placed. If I sleep the wrong way, my legs ache like toothaches for days, and I end up with a bout of costochondritis. Not fun. I am dreading replacing our king size mattress, but its going to have to be done this year. I think I will start a thread about that... if anyone has any ideas.

Blessings!

I take a total of 1700 mg of Neurontin per day. I have moderate/severe small fiber neuropathy in my feet and lower legs. The neuropathy is caused by my Crohn's disease [a rare extraintestinal mnifestation of the disease]. I slowly titrated up from 100mg to my current dosage to lessen sdie effects - primarily dizziness and sleepiness. I have been taking Neurontin for 4 years now. In combination with Tramadol, it controls my neuropathy pain. It can cause edema in the legs but I discovered that drinking lots of water reduces that problem. during this time I have lost 50 pounds so obviously it did not cause weight gain in me.

My neurologist wanted my to try Lyrica because it is thought to be superior for the pain control and I would have to take fewer pills. He titrated my Neurontin down and titrated the Lyrica up. It was a nightmare for me. It made me very lethargic and when I did come out of the stupor, I wanted to saw my legs off at the knees. Lyrica did not control my pain. I do know others that have had great results with Lyrica.

Time for the Flake to chime in. I've been taking gabapentin as needed for pain about 4 years. I've tried several other non-narcotic drugs for pain in various combinations, but I keep going back to 1200mg gabapentin.  Currently, each day, I take Celebrex twice daily, Arthritis Tylenol twice daily and 1200mg gabapentin when those don't work.  I take gabapentin 3-4 days per week. There are days that gabapentin doesn't stop my pain, but I'm still able to refuse narcotics.  I tried Lyrica a couple of years ago and cast it aside.  I asked my rheumy again about it and was told that I never reached the dosage recommended for fibro, so I'm trying it again, but I still take gabapentin. Yeah, even though I bi#*h about all the meds I take, my med list is in constant flux. As my signature reads, "Better living through chemistry."

I take a really low dose of neurontin and started it because I was having peripheral neuropathy in my hands and feet. My pcp prescribed it for me and it helps a lot with the neuropathy and also helps me sleep. I was supposed to work up to a dose between 300-500mg which is still considered low, but I couldn't tollerate much over 200mg, so that's where I stay. I don't think I'm at a high enough dose for it to help my headaches or anxiety though. On one of my visits with my rheumy we decided to see how I did off the neurontin so I could ge rid of a med, but the burning pain came back in my hands and feet, so I went back on it.

Ann,
I am so happy you got a chihuahua, what is her name? And I worried that my schnoodle Wilbur would not get enough air to breath if he sleeps tucked under like he loves to do. I just happened so read a vet column that said that they do get enough oxygen. I only tuck Willie under my top quilt.
sue

I take my neurontin (2,000 mg) at bedtime and it dos make me feel drowsy but I can still function. I believe that if I took 350 mg during the day I could function but it would make me feel drowsy. I'd listen to my doctor and call my pcp when he or she gets back in town. If you can't tolerate it, can you find out if your PCP has another doctor on call while he's on vacation? They usually do. I hope you get some relief. They usually won't keep you on percocet long term. Good luck.

I take klonopin and love it. So far, its been the least destructive to my liver, with the least side effects and most effective drug. I take it for anxiety, restless leg, and mild sleeplessness. I have been on the same 1mg dose for a bout 5 years now. I know I'm probably dependent but don't want higher doses, but then I'd be addicted to neurontin pretty bad if I took it that long, and seeing people go off neurontin in the mental ward was really bad. If they weren't nuts before, they were after. Also had bad liver problems from it. I don't like the drug, and I 've taken gabitril and lyrica, both really hard on my liver and I ended up having allergic reactions to them, they didn't work well either. I don't care for how they manipulate the GABA, but for those who can't take anything else and it works for them, its good. My son has epilepsy and went completely nuts on neurontin, not only did it put him into seizures, but caused him to suddenly become out of control psychotic and he tried to light himself on fire. He was not himself for sure and it was horrible. I have read so many bad accounts about the drug I wonder why they don't take it off the market and we probably should have sued, but it seems to be the thing to push on middle aged women with multiple health complaints. And for some it works. It does cause long term changes in the way your mind works, like all the new psych drugs. i guess it just depends on how well your liver works and how well you tolerate the stuff, but with the advanced liver problems I've seen in long term users and their rotten attitudes when they don't have it, I'd rather die than take it.

My benzo has been helpful in coming off long stints on narcotics, and I have gone without. While it's not pleasant, it wasn't anything worse than coming off narcotics for me, but then I take a low dose. I don't enjoy coming off psych drugs like neurontin, they are very unpleasant and even dangerous to stop. My mother is bipolar and she enjoys neurontin. It hasn't improved her mental state really, but she likes taking it. But she takes a lot of narcotics and other stuff too for health reasons. Klonopin is the only benzo I can take without getting depressed. I've gone off it before after years of use, and it wasn't too horrible for me and it was nice to not have my personality messed with.

Hi Emmi,

I take Lyrica for 3 months now which is a form of Gab. I have gained 15 lbs and have the itchies all the time. But...... it helps with the pain and fatigue of Lupus/ Fibro. I am also on Lexapro, Plaquenil, Prevacid and Prednisone....

As far the anti-anxiety, I am a lot moodier since I began to take it and it does not help me with my insomnia issues. I wish you well with it, you have to try it out, all pts are different. Lupus stinks!

Janice

Hey Emmi !! I'd love to hear about the relaxation technique, if it isn't to complicated to share. Or the name of it so I can look it up. Always great to have a way to calm the nerves. Blessings!

Very interesting to read all these responses.  Clearly it seems to work for some and not for others.  I was put on it for fibro pain in 05- lasted a month - before quitting.  I started on the lowest possible dose - which I later learned actually results in greater bioavailability than some of the higher doses.  At any rate - it didn't help much with pain, but I felt lethargic and depressed and had nightmares, along with weight gain - which just seemed to add to my problems rather than reduce them.  Rheumy felt that Lyrica probably would not work for me either, since it is in the same family as Neurontin.   I have problems with all kinds of meds, though - very difficult to take anything - so I'm probably not a good "test case".

Lucy