Lyrica, Topamax, Neurontin

[mmglobal]

In response to a question on another thread by dshobbies, I'd like to start a discussion about these meds for nerve pain.

I have personal experience with Neurontin and Topamax. I took Neurontin for more than 2 years. I hated the brain fog that came with it, so I resisted the push to megadoses... I spent most of the time on 900mg/day, occasionally going up to 1200. As much as I hated the loss of IQ, I am certain that it really helped. (Several times, I got fed up with taking it and still being in pain and stopped.... then I discovered that while I still hurt... it was helping a great deal.)

A change in pain docs put me on Topamax. I had a reaction that included tight throat and sores in my mouth, so I stopped the Topamax and went back to Neurontin.

It is my understanding that for about 25% of the patient population, Topamax is absolute magic in dealing with nerve pain. Clients of mine report good results with Lyrica.

I just spoke to a client of mine who is a pharmacist. She has agreed to come and chime in when she can be helpful.

So, let's discuss our experiences with these medications for nerve pain. I'll ask paindoc and Kay to come and add their 2 cents about the usage of these meds and specifically about dshobbie's question: What are average or equivalent dosages in transitioning from Neurontin to Lyrica.

Mark

[Michelle]

I was put on Neurontin and got up what my docs said was the max dose-2400mg each p.m. I was also put on Ambien at the same time, and since one of the side effects of Ambien is memory loss, I blamed my general fogginess on that. Now, I'm thinking it may have been the Neurontin. I couldn't spread the doses out through the day because it knocked me out too bad. I was a blubbering idoit on it at first. I couldn't remember things at all! Not like, forgot one item at the store, like, forgot the store existed. It got a lot better after that. I tried not taking it, but when the blow-torch restarted on my leg, so I figured whichever med was making me foggy, it was worth it! I'm now down to 800 mg am and pm, and doing well, very little fogginess. It will be one of the last meds my PM tapers me off. It really saved me from a lot of agony!!

[grima6]

Hi Michelle,
Glad to hear you are getting some relief from the Medications. I had to have a giggle about the memory loss thing! When I was on either of these meds (max doses) it used to take me all day to make a cup of tea. I'd put the tbag in and then put the sugar in and by the time I got the milk out the fridge i couldn't remember if i put sugar in so i'd tip it out and start again!! Don't ask me how many times I lost my car in shopping centres or forgot I was a mum of 4kids, not 3 or 2!!!!! Funny now but it wasn't then.Some people have problems when they ean off these meds but I had no problem just returned to being me! Unfortunately i didn't get any pain relief from any of these and am now having a Neurostimulator implanted next Friday October 20th to help with pain. Keep your chin up! It is a long and very personal road when you have pain but I am thinking of you here in Australia! Take Care Lorna

[Michelle]

Lorna,
Glad I'm not the only one. Sorry you didn't get any relief in exchange for your brain! I'm glad that I never forgot my son anywhere-he was with his Grandmas a lot. My biggest problem with the memory thing was that I was learning a new job at the time. For weeks I thought I had just discovered I was stupid, and had never noticed before! I hope your neurostimulator works for you. Pain is horrible. I'm doing much better after my ADR. I'm almost back to normal IQ wise, and can't wait until I can get off all this stuff. Hang in there, and thanks for the well-wishes from down under!! Thinking of you in Colorado!!

[dshobbies]

I was taking 2700 mg of Neurontin daily. Brain fog - yes but more importantly, I lost the ability to concentrate, on anything. The worst though was the negative affect on my eyesight. My pm switched me to Lyrica, which I believe I just got BC to cover and as I'm increasing the dosage, I'm again finding a negative affect on my vision. My concentration is returning, I think, but I'm also finding myself hungry all the time. I read some of the possible side effects and hunger is one of them

I thought, at 1 year post op that I wouldn't need the Neurontin/Lyrica anymore but I was wrong. Am I sol? My pm did not suggest Topamax.

Dale

[Maria]

I've been using Neurontin since 1998 for nerve pain bilaterally in buttocks/legs. I was on a dosage as high as 2400mg/day but this gave me far too "brain fog" so I decreased my dosage to 1800mg/day. With this, while a tad spacey at times (also using low dose Methadone bid for pain) I am able to function pretty well.

I too have tried to decrease my Neurontin dosage even further but find the burning pain returns and is too intense to tolerate. However, I tried decreasing it by a complete dosage vs. half which I may yet try. I do well on 1800mg/day w/the a.m. dosage at 600mg and the evening dosage before sleep at 1200mg.

At one point I tried switching to Toradol but couldn't tolerate the weaning of Neurontin and titration of Toradol.. so here I am, comfortable and without leg pain/burning or buttock burning for quite some good time.

For me, Neurontin is *lifesaver* as that burning nerve pain was really gnawing at my nerves..some of the worse pain I've ever dealt with!!

[Jim M2]

I wasn't convinced antidepressants worked, but several weeks after stopping a low dose of Elavil (10mg/day) I became 'weepy' and my chronic discomfort and pain became noticeably higher. I quit Elavil because it made my ears ring like crazy.

The doctor then put me on 25 mg/day of Zoloft. It seemed to help but I still had a touch of weepiness and could remember better times when I was on Elavil. So the doc bumped me up to 50 mg/day. Now I'm doing better still. I haven't noticed brain fog or loss of concentration.

At this point I'm more or less convinced these drugs help. Tomorrow I see the doc again. The experiment continues.

Jim

[paindoc]

This is in response to equivalent doses of several of the anti-convusants used for "nerve" pain asked earlier on this thread. In my mind this is a mute point. I often try to equate these drugs to antidepressants in that some work for certain patients, others work for a differnt group of patients, and sometimes, none of them work at all. I ALWAYS taper off the former medication and start at a low dose of what ever new anticonvusant I am trying. They are all associated with numerous side effects and just because you may not experience side effects with one drug does not mean you won't experience them with the new drug...thus the reason I always start over and don't just try to find an equivalent dose. The side effects you describe with neurontin are very common in patients usually subside over time. There is no hard and fast time frame for this, but they do usually go away. The max dose on neurontin for me is about 3600mg/day. Generally speaking, I rarely have to go that high. There are alot of these drugs on the market and it may take "tinkering" with dosage and different options to achieve maximal effect. Be patient and good luck.

[Eddie G]

I prefer Neurontin over Lyrica. I guess it's just a personal choice but it seems to help my leg pain better. Everyone's different. I am foggy from the Oxy & Valium. I didn't notice foggyness from Neurontin.

[Poncho]

I "remember" trying the neurontin, ramped up to 1,200mg per day and was in an Altzheimer's type state. No relief from the traveling pain from the back down the leg unfortunately. Then, ramped down.

Eventually, the pain generators were found and surgical intervention was needed (ADR).

For the type of nerve pain that I had - it didn't work. However, if we are comparing or doing some kind of benchmarking - it has been my experience that many patients who experience the burning type pain tend to be more successful in obtaining pain relief from the neurontin. Paindoc, does this mirror any of your experiences with this drug?

For me it didn't work out. It did for Maria. I must say though - it was worth a try at the time.

[Maria]

I just wanted to mention that after my percutaneous discectomy on L4 in '92 when I had severe bilateral burning pain in my buttocks, anterior thighs, calves, legs and into soles of feet~ I used Elavil from 10-50mg/day from 1993-1997 and then stopped taking anything for a year until in 1998 I felt the need for something for residual burning pain in some bodily locations (below waist). I was very relieved with this medication and then starting MS Contin (later Methadone) in 2001 as well as ESIs, seemed to all but knock out all remnants of the burning pain. Just on occasion now when overdoing I still get it in anterior thighs lightly and maybe a smidge in my buttocks still...

[nopain]

Neurontin did nothing for me except give me massive brain fog. I stopped and moved on to something else. Can't remember what else

[CurlsGirl]

Following ADR in 2003 which resolved my spinal pain, I was left with severe right sided neuropathy from hip to foot, primarily affecting the foot. My pain management doctor trialled me on several anticonvulsants before settling on Neurontin 900mg three times a day. Brain fog, lack of concentration were all part and parcel of the drug however the relief it gave me was worth it. I went from being wheelchair bound as the pain precluded me from walking to being mobile at least.

I remained on Neurontin in combination with Oxycontin, Mobic and Endep, until mid 2005 when I was switched over to Lyrica, the dose of Neurontin was reduced as the Lyrica was introduced. For me Lyrica has been marvellous. The side effects are minimal, (excluding the weight gain!) and it gives me a far better pain coverage. I have also been able to return to work for a few hours per week, something I haven't done since 2003.

I still search for a resolution of the pain but at least it is bearable with the aid of Lyrica!

Happy days
Dette