Health Organization for Pudendal Education

Goodness, not good! I do hope the piriformis thing helps tomorrow!

I am nearly off gabapentin now, down to just two of those big orange capsules a day - that's 600mg. I shall take my last capsule on Sunday and that will be the end of it. My GP suggested to come off over 10 days and that's what I am doing. I haven't had any problems at all other than feeling very tired for a couple of days and sleeping a lot, as I dropped down from 1800 to 900. Since then all has been fine.

Totally agree with you about the cost/benefit not being worth it, at least it wasn't for me. Right now I am actually feeling quite good, yesterday was a good day and today is good so far as well - do I dare hope that the nerve is healing?

scaredgal wrote: did Lexapro also help with the nerve pain? Did it cause side effects like weight gain? So you don't do any lower body weights at all anymore? .

Lexapro did not help much with pain although it took away some of the " need to pee all of the time" feeling so I wasn't waking up almost every hour during the night. it did not cause any weight gain for me.

I don't do any lower body weights anow. I am just so incredibly happy not to be living in a prison of pain all of the time and I won't risk going back to that.

I can say that gabapentin ( Neurontin) has helped me quite a bit, but I have to take it in very small doses, 100 mg. at a time, so that I don't have nasty cognitive effects that it is famous for. I take a total of 800 mg. daily and it does change my perception of pain quite a bit. It gets rid of that "hair on fire" kind of pain for me. I also take it with hydrocodone and the combination seems to work much better than either one individually. Most docs prescribe much higher dosage, so you have to ask for the 100 mg. capsules and take them in a way that fits your condition. Hope that helps.

I experienced the 'stupidity brain' as well between 1200-1500mg/day. I couldn't remember the things I was suppose to be doing at my job, would forgot words that I knew but couldn't get them to come out to describe what I wanted to say and couldn't retain my own thoughts if listening to someone's conversation. I didn't find that my pain was much relieved and found myself crying over stupid stuff and very frustrated trying to operate with cognitive ability. We deemed it a failure but after further failure with Oxcarbezepine,Toprimate (the worst), Citalopram and Savella the doc decided to try it again but with the lowest dose of 100mg starting out and tapering gradually to see if I find a dose that might help without overloading the system. I have a lot of sacral pain with buttock tenderness and right leg obturator muscle burning. Overall, my legs just hurt and my muscles feel shorter than my bones and both of my heels just ache. Does anyone have any experience with topical Neurontin?

I use gabapentin in a vaginal suppository form. 2X a day I use a suppository that has 13% gabapentin / 1% ketamine / 2% lidocaine. For me it dampens the intensity of the nerve pain so instead of feeling like a hot wire inside me where the nerve is - it feels more like a foreign object sensation. I also take other medication too but the suppository is a key part of my med regimen.

Merrie

First of all --- "moron-tin" --- I LOVE THAT!
I am in a quandary as far Gabapentin - and Lyrica as well.

I just weaned off gabapentin/neurontin - I had decided (at 1200 mg per day - 300 mg pills 4 x day) that it wasn't doing much for my pain, and the cognitive effects were really a bummer. I need my brain - it's all I have left!

I asked my pain dr. if I could switch to Lyrica but as with A's Mommy I would have to appeal my insurance co. My dr. just gave me samples and directions of how to gradually switch over. However, the samples were not enough to really decide -- I didn't feel a difference -- and so I decided to just GO OFF the "stupidity" medications.
I tapered off over a 2-3 week period and had no problems. I felt confident that I was doing the right thing.

But it has been almost a month now without any neurontin or lyrica, and I have been in massive bladder pain - like an IC flare of the WORST kind. I have been super careful with my diet, have used pyridium, etc. But the flare is not going away and the pain takes my breath away. I have been in bed for the past 3 weeks.

SO LAST NIGHT, out of desperation, I decided to take a 300 mg dose of gabapentin. I took a 75 mg lyrica this morning. I know, crazy to mix them right? But that is what my primary care doctor told me to try. Go figure. So far I can't tell but I THINK my bladder pain is one step down. I would like to go on Lyrica, not gabapentin, but it will take a while to get the okay from my insurance.

Aaaaaagh. Just don't know if going off the gabapentin / lyrica combination is the problem or not.. all I have to go on is the fact that my bladder was NOT flaring like this when I was on 1200 mg.
Sp I have to try something because this bladder pain is killing me...
I'll call my dr. tomorrow and get some direction. I will report back what happens.... the hardest thing is that we are all so different. What works for one person does

LottaNerve,

I'm sorry you're having a bad pain flare. I don't have any answers for you but I am sending you good healing vibes. You'll get through this!

Warmest wishes,

Lernica

Sharon,
It took 3 months of constant appeals to get my Lyrica approved by insurance. I have found it quite helpful without cognitive problems. From what I have read on the sites, more people report fuzziness from neurontin than with Lyrica. With your documented medical history, you have a lot of evidence for your appeal. In my case, I looked up ICD-9 diagnosis codes on the internet and found the ones that worked for Lyrica. Insurance hates to pay for Lyrica. You have to be agressive to get it. Good luck.

All My Best

Don

Sharon, I'm so sorry you're having such a dreadful flare (I've had that bladder pain). Do you think, in retrospect, the neurontin was having some effect? I came off amitriptyline (elavil) at one stage thinking it was a waste of time, but a month or so later all hell broke loose and I had the worst flare ever. All the very best with the switch to Lyrica.

Thank you friends! Guess what!

I got so desperate two nights ago that I took a neurontin (gabapentin) in the middle of the night.

And then later I woke up WITHOUT that horrible burning bladder pain!!! I felt like I could breathe again.

I have now been back on for two 1/2 days and I'm feeling so much better. I'm titrating up
So, for this girl, gabepentin has been great.

And for now, at least, I don't think I will push for lyrica since I'm doing so much better with the gabapentin.
The only drawback is losing my brain power again --- I'm already blanking out on words, but I'll take that handicap any day over pain!