Gabapentin questions....
Gabapentin questions....
Has anyone gotten relief of vaginal hypersensitivity/hyperarousal and bladder hypersensitivity from the use of gabapentin??? I've heard Elavil helps with this but I've tried it and didn't work out on that drug. Also...what side effects have people experienced...I know what drug information data sheets say but I was curious what everyone has actually experienced. Thanks!!
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Gabapentin questions....
I did not have the vaginal symptoms and my bladder sensitivity was helped by PT, not gabapentin aka Neurontin. But I have been on 2400mg per day of gabapentin for 1 1/2 years now, for pudendal neuropathy in anal area and upper pubic (not vulvar) area. It takes the edge off but it has been my least valuable med. I am also on valium and nortryptiline which help more...nortryptiline is the "next generation" of elavil, similar benefit with less side effects.
The gabapentin gave me a "buzzed" feeling when I 1st started taking it and consequently effected my behavior (loud 1-sided conversations, LOL). That went away over time and the long term effect I have is significant short term memory loss (a friend of mine also on the stuff calls it "moron-tin", I usually call my behavior "neurontin brain"). Tell me something and if it is not written down, it's not done. I have to make lists, keep a very good calendar, reminder notes everywhere, write stuff on my hand. If I put something down, it's lost because I won't remember where I put it. If someone is talking and I think of an important question to ask, I am going to have to be rude and interrupt or else by the time they finish, I will have forgotten my question. I lose words when trying to form a sentence. Just general neurologic stupidity. This can be coped with if you set up a good system or organization with calendars and reminders that work for you. It will reverse if you discontinue the drug; it doesn't cause permanent brain damage or anything.
All I have are mental side effects; no physical ones.
The gabapentin gave me a "buzzed" feeling when I 1st started taking it and consequently effected my behavior (loud 1-sided conversations, LOL). That went away over time and the long term effect I have is significant short term memory loss (a friend of mine also on the stuff calls it "moron-tin", I usually call my behavior "neurontin brain"). Tell me something and if it is not written down, it's not done. I have to make lists, keep a very good calendar, reminder notes everywhere, write stuff on my hand. If I put something down, it's lost because I won't remember where I put it. If someone is talking and I think of an important question to ask, I am going to have to be rude and interrupt or else by the time they finish, I will have forgotten my question. I lose words when trying to form a sentence. Just general neurologic stupidity. This can be coped with if you set up a good system or organization with calendars and reminders that work for you. It will reverse if you discontinue the drug; it doesn't cause permanent brain damage or anything.
All I have are mental side effects; no physical ones.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
Re: Gabapentin questions....
Kiki, I had no relief with gabapentin but zoloft and later lexapro helped quite a bit with the symptoms you mentioned.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Gabapentin questions....
I took gabapentin for 6 months at the level of 1200 - 1500 mgs and I have to say "ditto" to what HerMajesty said. I couldn't continue to live that way and weaned myself off of it slowly.
Burning vulva pain began 10/09
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
Treated for SIJD 9/10 and burning stopped and pain localized to rt side
Surgery w/ Dr Dellon 5/11 - didn't help my pain
2012 - PT, massage therapy, and ART therapy from chiropractor
MRI showed labral tear and US of groin found hernias
2/13 - surgery for sports hernia
5/13 - still have obturator internus spasms
5/13 - appt with ortho spine dr
8/16/13 - Arthroscopic surgery to rt hip for FAI and torn labrum
Re: Gabapentin questions....
Hi Violet,
Just sent you a long PM - don't know what the heck happened to it - but did the Zoloft help with the arousal???? Also, do you continue to weightlift again?
Just sent you a long PM - don't know what the heck happened to it - but did the Zoloft help with the arousal???? Also, do you continue to weightlift again?
Re: Gabapentin questions....
Yes but eventually I switched to lexapro because it has less GI side effects and it helped just as much. It made the difference between being suicidal and being able to function. A combo of lexapro and clonazepam allowed me to get a few hours of sleep at night.scaredgal wrote: did the Zoloft help with the arousal????
I do light upper body weights for toning but nothing like squats or lunges.
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Gabapentin questions....
Thanks, Violet - so in addition to helping the hyperarousal - 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? I know squats and lunges are not really good for PN, but are there leg/glute exercises that are OK to do? I'm sick of being this squishy marshmallow......
Re: Gabapentin questions....
Regarding gabapentin (Neurontin), I took a small dosage of 300 mg 2x a day for almost 8 months before my surgery, and it did nothing but make me fuzzy and ditzy. I can honestly say that after switching to Lyrica (post-operatively), I do not have these side effects. I have had to appeal to insurance to get it approved (go figure--- w/ my insurance, I've had to appeal EVERYTHING, but praise God, everything's been approved thus far!) so don't let that stop you from the possibility of trying it.
However, I have heard that some people get a huge benefit from gabapentin. It certainly is much cheaper, as it's an older drug than Lyrica, but do you want all the side effects? I keep hearing about Nortriptyline as having less side effects than Amitriptyline (which I've been on for almost 2 years), so I'm thinking about asking my PCP about that one, too.
AM
However, I have heard that some people get a huge benefit from gabapentin. It certainly is much cheaper, as it's an older drug than Lyrica, but do you want all the side effects? I keep hearing about Nortriptyline as having less side effects than Amitriptyline (which I've been on for almost 2 years), so I'm thinking about asking my PCP about that one, too.
AM
Daughter grew completely on left side of pelvis
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
Multiple uterine surgeries to fix uterine adhesions, septum, and endo
Had all the conservative workups done, 3Tesla (Potter), recovering from L sided TG (Hibner) 11/10, Botox 6/11 failed, bilateral anterior PNE decompression (distal Alcock's/perineal branch), Aszmann, Vienna, 10/11; dx'd with CRPS Type 2, 12/11, Ketamine @ CCF 2/12, doing 75% better PRAISE JESUS!
http://fighting-pne.blogspot.com
http://www.thepelvicmessenger.org
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- Posts: 1134
- Joined: Sat Sep 18, 2010 12:41 am
- Location: North Las Vegas, Nevada
Re: Gabapentin questions....
regarding the Lexapro: It is one of two SSRI's I tried (the other was Cymbalta), and both I had to discontinue because they had a very negative effect on my bladder. Now mind you, I have carried a diagnosis of interstitial cystitis for 25 years and even though it has been in remission for 22 of those years, I do I suppose have a bladder wall that is unusually sensitive to anything caustic. But, since bladder sensitivity has been mentioned in this thread, I do want to caution that the SSRI's might make the bladder worse in some people.
pelvic pain started 1985 age 14 interstitial cystitis. Refused medical care from age 17, did GREAT with self care for years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
2004 PN started gradually, disabled by 2009. Underlying cause SIJD & Tarlov cysts
improved with PT & meds: neurontin, valium, nortriptyline, propanolol. (off nortriptyline & propanolol now, yay!)
Tarlov cyst surgery with Dr. Frank Feigenbaum March 20, 2012.
Results have been excellent so far; but I won't know my final functional level for a couple of years.
- helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Gabapentin questions....
It has taken me 2 months to come off gabapentin and I've HATED it ! I knew just stopping, wasn't recommended but even weaning off has been ridiculous. Hot sweats, flu symptoms with no temperature, crashing 'dips' and the need to lie down asap, fluctuating/increased heart rate . . . . 2 months of it. Wringing my jim jams out nearly every night. My husband said sleeping next to me was like being on a hot trampolene, see he does get to bounce around on the bed with me . I actually went to have my blood tested as I'd had an overactive thyroid in the past (10 years ago tho'- oh! how skinny was I then ! ! ) anyway it has just come back as all fine so it must be down to that crazy drug.
Had the 'thick' thing as described by Her Majesty, hell what excuse can I use now ? ?
The reason behind stopping, was trying to see how my steroid shots were really working. I use tramadol too and take 'when required', fairly irregular dose. . . . Well not being regular IS the added extra here. I try not to over do them,and always pop a laxitive or two, constipation UGH ! the pelvic problem sufferers additional nightmare.
Gabapentin didn't have much nerve effect until 2400 per day for me, I took them for about a year at this dose. They made me feel lighter ? ? or less 'crushed' around my pelvic (piriformis area) and dulled the nerve pain ever so slightly. I get pricking pins and needles in my feet when walking, so am trying (hard) to think of these as 'tickling' now, and nothing seems to touch the burning, vice grip or electric zap pain.
I didn't have any side effects with gapapentin, other than stupidity, after the initial co-ordination problems (no driving at first), but I can't say that any positives have outweighed the negatives for me. And that is the crux of it, isn't it ? I really thought I could handle them no prob and have been amazed how hard the withdrawl has been.
Getting botox (piriformis) tomorrow so maybe I won't need anything after that . . . . HOORAY! I am going to ask about cymbalta and lyrica though BUT I will monitor any effects carefully . . . it's daft pumping drugs down for little effect. The old addage 'everyone is different' applies of course, BUT BEWARE !
Had the 'thick' thing as described by Her Majesty, hell what excuse can I use now ? ?
The reason behind stopping, was trying to see how my steroid shots were really working. I use tramadol too and take 'when required', fairly irregular dose. . . . Well not being regular IS the added extra here. I try not to over do them,and always pop a laxitive or two, constipation UGH ! the pelvic problem sufferers additional nightmare.
Gabapentin didn't have much nerve effect until 2400 per day for me, I took them for about a year at this dose. They made me feel lighter ? ? or less 'crushed' around my pelvic (piriformis area) and dulled the nerve pain ever so slightly. I get pricking pins and needles in my feet when walking, so am trying (hard) to think of these as 'tickling' now, and nothing seems to touch the burning, vice grip or electric zap pain.
I didn't have any side effects with gapapentin, other than stupidity, after the initial co-ordination problems (no driving at first), but I can't say that any positives have outweighed the negatives for me. And that is the crux of it, isn't it ? I really thought I could handle them no prob and have been amazed how hard the withdrawl has been.
Getting botox (piriformis) tomorrow so maybe I won't need anything after that . . . . HOORAY! I am going to ask about cymbalta and lyrica though BUT I will monitor any effects carefully . . . it's daft pumping drugs down for little effect. The old addage 'everyone is different' applies of course, BUT BEWARE !
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.