Gabapentin Questions

Discuss different Pain Management Options; Medication options including side effects and Worldwide variances in names etc.
JeanieC
Posts: 198
Joined: Tue Sep 21, 2010 11:47 pm

Re: Gabapentin Questions

Post by JeanieC »

Thanks for the information from your pain clinic, Calluna

Cost is definitely a factor I would say in the US where we do not have an NHS. Gabapentin (neurontin) is available as a generic which means that a 30 day supply is available to people who have insurance for the lowest copay, often just $5 for a 30 day supply. Pregabalin (lyrica) is not available as a generic in the US where it is now being heavily marketed on television for fibromyalgia. This means that the consumer and insurance must pay much more, even though the drugs are very similar.
Of course most of us would pay anything to help with this miserable pain, and the drug companies know that.

In my own case I have tried both unsucessfully but I did only go up as far as 1800mg of neurontin and 300 of lyrica. No side effects from that much neurontin, but swelling of the legs made me stop taking lyrica. I might try nuerontin again soon though as I need to get off of opiates myself.

Tracy, I hope you are finding some help, let us know if you are.
Diagnosed with left side PN by Dr Renney, March 2010, after over 2 years of searching for help
Left TG Surgery, Dr Ansell, August 2010, failed to relieve pain
donstore
Posts: 463
Joined: Mon Nov 08, 2010 6:13 am
Location: San Francisco

Re: Gabapentin Questions

Post by donstore »

Caluna and Jeanie,
Thanks for sharing your experiences. I tried nortryptelene but had to discontinue after 9 days due to negative reactions (fast heartbeat, tingling in extremeties). Will report back when I get some results (good or bad) from either lyrica or neurontin. Calluna, I also found your link to your pain clinic info invaluable.
Mild to moderate PN for 5 plus years, pain controlled by lyrica and opiates.
Nerve block (unguided) 9/10 Dr. Jerome Weiss - sciatica for 5 months but got numb in painful perineal/scrotal area - he diagnosed entrapment - but no more cortisone for me
Potter MRI 5/11 - rt STL entrapment of PN at Alcocks
Consult with Dr. Hibner Feb. 2012
Bilateral inguinal hernias diagnosed by dynamic ultrasound - surgery on 6/20/13
Feeling a little better, a few more months will tell
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Gabapentin Questions

Post by calluna »

That's interesting about the cost, JeanieC. I did not know that drugs were advertised like that, to me it does sound rather unethical - or perhaps that is rather harsh. It is strange to me, anyway. I think that although we do like to complain about the NHS, and indeed it is far from perfect, we are nevertheless lucky to have it.

From what I am told by my GP - and the pain clinic - it is the combination of an anti-depressant and an anti-convulsant that usually does the trick, even if the two are both being taken at dosages that don't have any effect if taken alone.

I have tried both these drugs before and failed to cope with the side effects, in hindsight I think I could have tried harder, so that is why I am trying them again. I have halved my dosage of tramadol now, I am down to 150mg a day and I hope to be down to zero in another couple of weeks. The pain level is up, but I have lots of ways to manage that.

Donstore, I am glad the information was helpful. I do hope that you find something that works for you.

And I will echo what JeanieC has said - Tracy, I do hope that you have found some help.
HerMajesty
Posts: 1134
Joined: Sat Sep 18, 2010 12:41 am
Location: North Las Vegas, Nevada

Re: Gabapentin Questions

Post by HerMajesty »

Oh, HerMajesty, when you say the Gabapentin works for you for pain, can you actually spend any time sitting now?
Tracy,
I am sorry I lost track of the thread and didn't realize you asked me a question til now. I started gabapentin in conjunction with other treatment, so while I am fully functional now and can definitely sit, I really do not give gabapentin the credit for that. As far as meds, valium has been by far the most effective. Elavil was also a good one but I gave it up due to side effects.
To me gabapentin has had only a very small role in my 80% improvement. But there is a role: I have tried to cut back and have experienced a mild but objectionable increase in symptoms as a result.
I currently am on gabapentin, ultram and valium. The valium is great, the gabapentin is so-so, and I am not sure the ultram is doing anything. so the plan is for me to wean off ultram this month, and then my Pain Clinic PA is going to try me on nortryptiline (sp?), which is very similar to elavil but might have less side effects. If that works for me, I might be able to get off the gabapentin. I am really not crazy about the gabapentin and would rather find a substitute that does not make me quite so mentally confused.
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.
User avatar
ezer
Posts: 689
Joined: Sun Sep 19, 2010 6:53 am

Re: Gabapentin Questions

Post by ezer »

Gabapentin never helped me and at any dosage. I was up to 3,600mg/day and it had no effect (except making me a zombie). It is hit or miss but a few years ago, Gabapentin was shamelessly promoted to doctors by its manufacturer as the ultimate nerve pain medication and many doctors believed those claims (see Franklin v. Pfizer case). In fact I don't think Gabapentin is as efficacious as claimed (especially 6 or 7 years ago).

http://en.wikipedia.org/wiki/David_Franklin_(scientist)
http://www.ncbi.nlm.nih.gov/pmc/article ... =pmcentrez
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
TracyB7777
Posts: 196
Joined: Mon Sep 27, 2010 3:42 am
Location: Vail, Arizona

Re: Gabapentin Questions

Post by TracyB7777 »

Hmmm, I'm up to 600 mg 2x/day and 300 mg 1/day. Plus I take Paxil daily. I have noticed a slight difference in my pain, so I'm hopefully once I have it bumped up to 600 3x/day I'll notice a real difference. Dr hasn't suggested Valium but I will mention it at the next appointment. Thank you all!!!
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now. :(
Griff522
Posts: 314
Joined: Sun Oct 10, 2010 7:42 pm
Location: Michigan

Re: Gabapentin Questions

Post by Griff522 »

Tracy, I have taken Paxil before and had terrible night sweats and eventually quit taking it. I was totally off of anti-depressants and then this crap hit me. In March my dr suggested I try Cymbalta because it had be shown to help with neuropathic pain. I'm on a very low dose that helps with my depression but not so much with pain. But I know that some people take it at a higher dose or in combination with another med and find it helpful.
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
TracyB7777
Posts: 196
Joined: Mon Sep 27, 2010 3:42 am
Location: Vail, Arizona

Re: Gabapentin Questions

Post by TracyB7777 »

Well, exhaustion struck yesterday (very busy weekend and no break, I know better). So I'm at work, trying to look like I know what I'm doing when I realize I'm an hour late on my afternoon Gabapentin. I grab my pill box and see I have 6 pills in the box and for some reason thought I needed to take half the pills, so 900 mg later WOW, look out!!! I felt like I'd been drinking, I was light headed and had trouble focusing. See I'm only at 600 mg right now. Exhaustion and meds don't mix!! But I survived...my friends and coworkers hung out with me until I felt safe enough to drive home (40 minutes). I do hope I don't have to go up to that three times a day!!!
Have been dealing with burning pain since Jan 2010.
No sitting since April 2010.
Seen the following dr's: DO, GYN, Dermatologist, Accupuncturist,
URO GYN (his RN is the one who suggested the pain could be PN), Neurologist
Had ECG and MRI both inconclusive, only the SSEP said Pudendal reaction was abnormal and they lost that test result.
Saw Dr. Castellanos April 6, 2011. Next steps, MRI and botox. Having PT while waiting.-Botox denied, appealing to Insurance company now. :(
Griff522
Posts: 314
Joined: Sun Oct 10, 2010 7:42 pm
Location: Michigan

Re: Gabapentin Questions

Post by Griff522 »

Tracy, that is precisely the reason I weaned myself off of gabapentin. I couldn't think straight. I also take trazodone at night to help with sleep and twice I accidentally took my trazadone in the morning thinking that it was my synthroid (morning med) even though I had morning and evening pill boxes. I was a walking zombie that couldn't finish a sentence and I still had pain.
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
calluna
Posts: 1058
Joined: Mon Sep 27, 2010 11:57 pm

Re: Gabapentin Questions

Post by calluna »

Picking up this thread again - has anyone had problems with vision whilst taking gabapentin/neurontin? I've been noticing my vision deteriorating over the last couple of weeks. I am up to 1500mg a day today and my vision is so blurry, I certainly cannot see well enough to drive. I'm having problems seeing the screen here as well. I didn't have this side effect the first time I tried gabapentin, and I'm hoping it is temporary, that it will wear off in a while ..... Can anyone comment?
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