Health Organization for Pudendal Education

I have been taking Neurontin 2400mg for 6 months now. I am a small woman, but somehow was tolerating this dose decently well. In the last month though I have noticed a worsening of my memory. I cannot think well to answer people's questions and sometimes I just feel like I blank out. I'd been handling it ok, but last week I really started having dizziness while driving (like trouble focusing on the road) and this worries me greatly. I am not getting great pain relief on 2400mg of Neurontin anyways. My daily levels stay around a 5 and can go up to a 7 or more sometimes at night. So I think I am going to try to slowly start tapering off the Neurontin at least maybe get back to 1800mg. I am just confused as to why I have noticed a big change after already taking it for so long. I thought the side effects got less over time. Anyone else have any experience with this? Maybe it's just the the benefit has lessened over time and I don't feel the side effects are worth it anymore. Who knows.

Faith,

Sorry to hear about your side effects. It does sound as if you are not tolerating Neurontin well. And you are still at a 5 - 7 level in pain? It sounds to me that it might be time to try something different, maybe Lyrica? I think you should discuss a possible medication change with your doctor.

Today I got some lidocaine patches for my sacrum pain. Haven't tried them yet. Have you?

Hiya Faith,

I took Neurontin for about three months. I was also on Baclofen and Zanaflex at that time, but whoa did I have brain fog! I would be standing in front of my students lecturing and just completely lose my words. I wouldn't be able to finish sentences! Actually, those months are pretty much a black hole in my memory.

Some of the ladies on happy pelvis (another pelvic pain forum) get great results with Cymbalta instead of Lyrica/Neurontin. Have you tried that? I forget. Also, I was recently introduced to Tramadol as a pain med. Not sure why it took me so long to try that. I can actually function when I'm on that, and it's great for breakthrough flare pain.

Just some thoughts...take them, leave them. As an aside, I had no trouble tapering off my Neurontin, but I only took a max dose of 1800. I did the taper over about 8 days.

love,
Lauren

I took up to 3,600 mg of neurontin per day. I had a tough time remembering the names of my kids at that dosage.

ezer wrote:I took up to 3,600 mg of neurontin per day. I had a tough time remembering the names of my kids at that dosage.

I bet you did! I tried to go up to 3200mg for like a week, but I was so dizzy I couldn't hardly function.

Lernica wrote:It does sound as if you are not tolerating Neurontin well. And you are still at a 5 - 7 level in pain? It sounds to me that it might be time to try something different, maybe Lyrica? I think you should discuss a possible medication change with your doctor.

Yeah I mean I have days sometimes weeks where I have pain levels more around 3-4 (which I think is probably as good as I am going to get right now), but lately I've been up to the 5-7 range some days. I also have a lot of other myofascial pain that highly contributes to this pain increase, especially my feet,abdomen, butt, shoulders, and neck. I have not tried lidocaine patches because they were too expensive, even with insurance, but I would think they would help some. Oddly enough my sacral pain has been a tad better the past few weeks, but maybe that's because I have had a period for 4+ weeks as I am coming off Seasonale birth control (which greatly flared my pain). Who knows. I have asked my doctor twice about switching to Lyrica, but she says it's the same thing as Neurontin (just the metabolite of it so you can take less of it mg wise) and I won't get any additional benefits from it. Lyrica seems to have more side effects so I don't really want to mess with it, plus Neurontin is only $4 as compared to like $30 of Lyrica/month

pomegranate wrote:Some of the ladies on happy pelvis (another pelvic pain forum) get great results with Cymbalta instead of Lyrica/Neurontin. Have you tried that? I forget. Also, I was recently introduced to Tramadol as a pain med. Not sure why it took me so long to try that. I can actually function when I'm on that, and it's great for breakthrough flare pain.

I tried Cymbalta but with 2400mg of Neurontin it was WAY too much CNS depression for me. I was extremely dizzy and it was like an out of body experience for me (it didn't even help my pain!). I would be willing to try it again if I wasn't on so much Neurontin. I have tried Tramadol too. But again with the Neurontin it's almost too much CNS depression for me. It makes me anxious too, weird. I can only tolerate half of a 37.5mg pill and I still get a headache from all the CNS depression. Ativan 0.5mg helps me a little if I have to sit, like at church, but I still have trouble focusing on the preacher sometimes. Oh well.

Thanks for you input Lernica and Lauren. Hopefully I am just in a really bad flare and things will calm down soon. It's just hard to stay off my feet with a toddler and that's what I really need to do.

Faith,

I'm glad you posted this. While I am no longer on Neurontin (took pre-surgery), I have just experienced hell on earth last night and today. It all started on Saturday with my hands and extremities tingling and losing feeling. Then, my vision because extremely blurred. Last night was the worst when I couldn't sleep at all because it seemed as though my legs ached like I had run a marathon and I was experiencing uncontrolled twitching of my toes, legs, and thumbs. Recently (over the past 2 weeks), I doubled my dosage of Lyrica to 150mg 2x a day. My pain relief was a lot better. Then, over the weekend, it stopped working and the side effects went way up. I called my doctor this morning and now I am going back to 75 mg 2x a day. I don't expect any miracle, but I think I'm just somewhat depressed right now.

God help us all.

A's Mommy

Oh AM, that's scary! I'm so glad you went back down again! I would be inclined to get off Lyrica if it were me. Don't like the sound of those side effects at all! How did you find Neurontin?

Are you taking anything else for your nerve pain, like Elavil? Are you taking the odd anti-convulsant like Valium or Klonopin? Is your pain nerv-y or just plain hurtin'? I find that when my pain is really nerv-y (like I feel I'm gonna jump out of my skin), a little Klonopin really helps to calm it down. Also, sertraline is an antidepressant with a nerve-calming or anti-anxiety effect. It also really helps me (I think).

I'm sorry you've had such a bad week. I hope it gets better soon!

All my best,

Lernica

Hi Lernica, I also take 5mg Valium 2x a day and Elavil 10mg at night.

My pain aches and aches. Sometimes burns and shocks

Faith wrote:I thought the side effects got less over time. Anyone else have any experience with this?

Yup - that's what they say. However, when I was taking it, my side effects got MUCH worse, the longer I took it. And I was only taking 900 mg/day! Nor did I get any pain relief from it.

Faith wrote:I cannot think well to answer people's questions and sometimes I just feel like I blank out. I'd been handling it ok, but last week I really started having dizziness while driving (like trouble focusing on the road) and this worries me greatly.

That was one of the (many) scarier side effects for me. I never should have been behind the wheel of a car. To me, it felt like everyone was driving AT me, instead of along side me. There were many times I would forget to park the car and just try to get out. I'm lucky I didn't hurt someone, or myself. There were times that I'd be driving to or from work and would suddenly realize I had no idea where I was. It was horrifying! Then there were the times I'd be in the grocery store or a department store and it seemed like I had some bizarre heightened awareness; like, all the colors were too bright, I could hear hundreds of individual conversations, I dunno - like everything was directly in my face. I already had a hard time walking because of pain, but I also experienced the dizziness and always felt like I was going to fall.

ezer wrote: I had a tough time remembering the names of my kids at that dosage.

I can relate to that! I'll spare you the boring details of all the memory issues I had and the stupid things I did!

A's Mommy wrote:my hands and extremities tingling and losing feeling. Then, my vision because extremely blurred.

I had that side effect from Neurontin, too. I have heard of people experiencing this from Lyrica, as well. Lastly, the drug gave me liquid diarrhea the entire time I was on it. By the second month I was taking it, it evolved to liquid, incontinent diarrhea. I took it for about 6 months. Don't miss it!

I have decided to put my Neurontin increases on hold. At 1500 mg/daily I am having trouble concentrating, have lost interest in reading (a favorite past-time of mine), and feel very heavy and achy in the head. I went up to 1500 two weeks ago. Today I'm going back down to 1200 and staying there.