Neurontin side effects

Discuss different Pain Management Options; Medication options including side effects and Worldwide variances in names etc.
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Neurontin side effects

Post by Faith »

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.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Neurontin side effects

Post by Lernica »

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?
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
pomegranate
Posts: 157
Joined: Sat Sep 18, 2010 3:12 am
Location: Oklahoma

Re: Neurontin side effects

Post by pomegranate »

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
2008: mild pelvic pain and PFD began
2009: true PN/PFD pain, two PN blocks, normal PNMLT
2010: PT and conservative management with moderate improvement in PN/PFD symptoms
2011: surgery for extensive endometriosis; arthroscopic hip surgery to repair labral tear and FAI (right hip)
2012: C-section delivery of first child
2014: arthroscopic hip surgery to repair labral tear and FAI (left hip); C-section delivery of second child
Ongoing physical therapy since 2010 for both pelvic floor and hips.
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ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Neurontin side effects

Post by ezer »

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.
2002 PN pain started following a fall on a wet marble floor
2004 Headache in the pelvis clinic. Diagnosed with PNE by Drs. Jerome Weiss, Stephen Mann, and Rodney Anderson
2004-2007 PT, Botox, diagnosed with PNE by Dr. Sheldon Jordan
2010 MRN and 3T MRI showing PNE. Diagnosed with PNE by Dr. Aaron Filler. 2 failed PNE surgeries.
2011-2012 Horrific PN pain.
2013 Experimented with various Mind-body modalities
3/2014 Significantly better
11/2014 Cured. No pain whatsoever since
Faith
Posts: 697
Joined: Fri Oct 15, 2010 5:15 pm

Re: Neurontin side effects

Post by Faith »

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.
:lol: 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.
-11/08 vulvodynia began around conception of first & only pregnancy
-3/10 sacral/sitting pain began after SIJD manipulation
-Progressive widespread pain- central sensitization
-PT, meds, injections, botox, ESWT = debilitated.
-5/12 Potter MRI - scarring of left ST, coccygeous & posterior alcock
-12/12 - left FAI/labral hip tear surgery
2014-2019 managed w/ gabapentin, massage, and lifestyle mod
2020 - big flare up
www.thepurposeofpain.blogspot.com
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A's Mommy
Posts: 447
Joined: Fri Sep 17, 2010 12:46 pm
Location: Pennsylvania
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Re: Neurontin side effects

Post by A's Mommy »

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
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
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Neurontin side effects

Post by Lernica »

Oh AM, that's scary! :shock: 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
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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A's Mommy
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Location: Pennsylvania
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Re: Neurontin side effects

Post by A's Mommy »

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

My pain aches and aches. Sometimes burns and shocks
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
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Karyn
Posts: 1655
Joined: Fri Sep 17, 2010 12:59 pm
Location: Lowell, MA

Re: Neurontin side effects

Post by Karyn »

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! :shock: 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. :cry: I took it for about 6 months. Don't miss it!
Ultra Sound in 03/08 showed severely retroverted, detaching uterus with mulitple fibroids and ovarian cysts.
Pressure and pain in lower abdomen and groin area was unspeakable and devastating.
Total lap hysterectomy in 06/08, but damage was already done.
EMG testing in NH in 04/10 - bilateral PN and Ilioinguals
3T MRI at HSS, NY in 09/10
Bilateral TG surgery with Dr. Conway on 03/29/11. Bilat ilioinguinal & iliohypogastric neurectomy 03/12. TCD surgery 04/14.
Lernica
Posts: 960
Joined: Fri Jan 14, 2011 10:31 pm

Re: Neurontin side effects

Post by Lernica »

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.
Athlete until pain started in 2001. Diagnosed with PN in Nov. 2010. Probable cause: 3 difficult labors, 5 pelvic surgeries for endometriosis, and undiagnosed hip injuries. 60% better after 3 rounds of shockwave therapy in Cornwall, Ontario (Dec - Feb/12). 99% better after bilateral hip scopes for FAI and labral tears (April and July/12). Pelvic pain life coach Lorraine Faendrich helped me overcome the mind/body connection to chronic pain: http://www.radiantlifedesign.com
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