Question re: neurontin/nerve pain

[dridobits]

Hi, I had my fusion 1 1/2 years ago. In the last few months, I have developed siatica (sp)? peraformis issues which are causing a lot of nerve pain and I feel like I did at the onset of my accident many years ago. It's a nightmare as I have a little over a great year with my fusion and now it's worse than ever due to nerve pain.

What are peoples experiences with neurontin or any other suggestions for nerve pain which is driving me nuts.

Thanks!

[Maria]

I've 2 discectomies. One on L5S1 that rendered me better and then L4 bulged so I had a percutaneous discectomy on this level which failed badly leaving me with much more pain esp. burning pain from my waist area down my buttocks and thru out my legs and in the soles of my feet.

I took elavil for 5 years before Neurontin was prescribed which greatly alleviated the pain and then started a low dose opioid pain medication and lumbar ESIs which further really helped keep the pain quieted.

The neurontin worked well for me as I took it 12 years however the last year or two I was on it I felt like I could hardly think, never read, and just felt "stupid."

Since it's antiseizure medication with off label use for neuropathies I think my CNS (central nervous system) probably no longer needed it to quiet the neuropathies and so it was overwhelming my cognitive abilities and snowing me so to speak at this point as I felt nothing like this mentally when I first started to take it.

Not sure how the drug accumulates and is stored either as I was on 1800mg/day for 12 years. The thing is when I needed relief the drug worked well for me.

If I were going to start something for neuropathies now I think I'd prefer to try Lyrica first. It's more specifically designed for neuropathies (diabetic) and I've heard it creates less mental sluggishness than Neurontin (but can't say from experience since I've not used it).

Good luck and hope if you are going to try Neurontin or Lyrica or even Topamax that whatever you try will help to alleviate some or much of this pain.

[dridobits]

Thanks Maria...I tried lyrica without much sucsess. I call it the chubby drug as I ate all the time. What do you know about Topomax? I just looked it up and it said some weird things that it caused?

Anyone know if sciatic pain is permanent or temporary?

[Maria]

D,
I actually took this as an adjunct drug for migraines altho some people use it for neuropathies. It has a reputation of seriously decreasing one's appetite and I have to admit I wasn't hungry at all on it but then again nor was I on Neurontin after the first bit of time taking it (in the beginning I had the munchies bad for several weeks to a month).

I think many of these drugs when reading about them are enough to scare anybody away from trying them but where I was at back when needing to try and level out pain was unless it had a "black box" warning I'd probably try it and maybe even then depending on my level of pain.

I haven't had what I consider to be classic sciatica because what I had was very episodic even tho it was sciatic nerve like in terms of pain but not really what I think of classic sciatica.

Does it go away? Good question? Hopefully someone can answer that for you. My neuropathies went away. I'm almost afraid to write that but it's been nearly a year w/o medication for them and I haven't had a real recurrence altho some very light burning in my quads with too much sitting or chronic over stressing of my low back.

I'm so thankful that even tho I waited what seemed an eternity that L5S1 did autofuse. What a difference that's made in my pain levels. Now if only L4 would do the same (and hoping the result would be the same/less pain).

[dshobbies]

Hi D,

After everything, you now have this nerve pain. I'm no authority but I don't think you'll find success with Neurontin if you haven't had any with Lyrica. Actually Lyrica is supposed to work like Neurontin but with less side effects.

Having most major side effects with Neurontin, including brain fog, and poor eyesight, and no desire for anything -I tried Lyrica. Though less of a dosage was needed, there was really no difference. I chose to live in pain instead.

However, should this pain increase, I'm pretty sure I'd go back on the drug. Life is simply easier without it.

Pain's a bitch. Nerve pain is the devil. I wish you every luck in finding a remedy.

Dale

[mmglobal]

I call it Morontin. This class of drugs is very interesting. Some people get great relief from some of them, but not others. Some people get side effects ('brain fog') from some, but not others.

I took Neurontin for a couple of years. I did get the brain fog, but it was worth it for the relief.

I asked my doctor about the brain fog and he said... "oh, it doesn't do that!"

I posted online about it and got many, many stories, like the person who found their underwear in the fridge, but didn't know how it got there.

Good luck!

Mark

[Maria]

I would give Neurontin and/or Topamax a try if the pain is seriously hindering you which it sounds like it is. I know the Neurontin was Ok for me in the beginning for a number of years w/o feeling stupid tho when that brain fog started it got pretty thick.

When I first wanted to switch from Neurontin to Lyrica my PM said he'd rather we know works for me as the Lyrica may not. I know people that cannot take Lyrica tho can take Neurontin and vice versa. So best just give it a try yourself as it's the only way you'll know.

Underwear in the fridge.. yeah.. that doesn't surprise me!!!

[dshobbies]

Another 'weird' side effects are dreams from the Twilight Zone!

[dridobits]

Underwear in the fridge? What? doesn't it go there?

[cherylstewart67]

Gabapentin (spelling?) is the generic for Neurontin. It only helped me for about a year then we kept upping the does until I began to have vision issues! Also, it does make you gain weight as well with or without the munchies. I like to drink with my husband on the weekends, so Lyrica is out. They recently gave a Rx for Amitriptyline but it too has side effects with alcohol and sun exposure. The only two things left in this life that I can do or enjoy! So I do not know what is next...Cheryl

[dshobbies]

Cheryl,

I have chosen to not take these drugs which did control the majority of my pain. The result is other meds to help me deal.

I take Celebrex daily and am very nervous as to its dangerous side effects. I have been taking it for almost 6 years now but every time I try to stop, the pain is just a little too intense. I often take muscle relaxers to help me sleep because sometimes I cannot find any comfortable position in bed. Then I also have just plain pain meds.

This is a trade-off. I can control my pain but lose control of my brain (and eyesight) or I deal on a day to day. Unfortunately, sacrafices are a way of life for most spineys. Each person must decide for themselves what they can and cannot live with/without. Then again, there are some of us that have few choices. As much as I hate living with pain, I'm still grateful that I'm so much better than 6 years ago.

Sounds to me like you have to deal with your pain directly and/or learn to live with it. Giving up your favorite things is too big of a sacrifice, IMHO.


Dale

[Eddie G]

I prefer Neurontin/gabapantin over Lyrica. Just a personal taste I guess. My sciatic nerve pain comes & goes.

[cherylstewart67]

Zipsor is supposed to go to the area of inflamtion only and then you urinate the rest out of your system. I got a sample yesterday and will let all know if it helps any...As for the muscle relaxant, Robaxin seems to have the least side effects. As for the nerve pain, I don't know what I will do....

[Eastex]

I tried Lyrica a few years ago and I was told that it was a major cause of my divorce. I was a "monster" on it. I think it was the stress of my constant pain on both of us and I do admit I had some severe mood changes.. I tried other nerve meds and I am back to Lyrica now. I have been on it for a year ( at a much higher dosage) and it seems to work better than before. Zipsor is one that I wish I could of took longer. United Healthcare didn't cover it after my sample ran out. I have also been on Fentanyl patch for about the same amount of time as the Lyrica. I think that this combination has helped me the most.

[cherylstewart67]

Originally Posted by Eastex

I tried Lyrica a few years ago and I was told that it was a major cause of my divorce. I was a "monster" on it. I think it was the stress of my constant pain on both of us and I do admit I had some severe mood changes.. I tried other nerve meds and I am back to Lyrica now. I have been on it for a year ( at a much higher dosage) and it seems to work better than before. Zipsor is one that I wish I could of took longer. United Healthcare didn't cover it after my sample ran out. I have also been on Fentanyl patch for about the same amount of time as the Lyrica. I think that this combination has helped me the most.

i knew when the docotr gave me the sampple that translated to newer drug higher cost. i have health choice, so it's most likely not covered by them either.

[jbcool35]

Neither one of them touched my nerve pain and they both made me bedridden all day. Not for me. Others I know swear by them and function like they aren't taking anything. Funny, isn't it?

[dridobits]

Has anyone been on this for nerve pain? This is what the doc put me on and although it does help me sleep and works as an antidepressant, it seems to do little for nerve pain? I've been on it close to three weeks now. If this doesn't work, I'll have to try the neurontin again.

I'm on so many drugs it's crazy! Going back to the surgeon on Monday to talk with him and get new xrays and have a pow wow about the nerve pain. I can handle regular head on pain but nerve pain makes me go out of my freaking mind.

[Maria]

I took amytriptyline (Elavil) for 5 years post my second spine surgery for horrible burning nerve pain that was down my buttocks/bilat lower extremities. It took the edge off but didn't really do the trick like the Neurontin did altho the worst of the neuropathies sort of went away after 5 years post op and then I had remaining residual pain that I started the Neurontin for and took for 12 years before realizing this pain had "gone."

I agree this type of pain will drive one crazy.. it just gnawed at me constantly and really made life intolerable before getting it under control. The best combo of drugs that worked well for the pain actually was Neurontin and Methadone. Lumbar ESIs on regular basis helped with the low back pain and the burning to some degree. Tho that all wasn't instituted until 2001 and my last surgery that made the probs chronic (vs. episodic) was in '92.

Hope you get relief soon. So what if you have to use drugs to do it? If your pain is anything like mine was believe me it's well worth it.

[dshobbies]

I completely agree about nerve pain constantly gnawing at you. Accupuncture also help me more than anything else and I was shocked. My pm suggested it 18 months post op. The acupuncturist claimed that had I begun treatment at 6 months, treatment would have been more effective.

If I had to put a number on it, I'd say I improved 60-65% with acupuncture and was able to get off most drugs.

Not all practitioners are as qualified as they claim. Ask around if you want to give it a try.

Dale

[cherylstewart67]

Originally Posted by jbcool35

Neither one of them touched my nerve pain and they both made me bedridden all day. Not for me. Others I know swear by them and function like they aren't taking anything. Funny, isn't it?

It was only supposed to help the inflamation; like Robaxin helps the muscle tension. But the drug they gave me for the nerve pain have so many side effects. I don't think anythig really helps the type of pain we have or at least not for long...

[Maria]

I went to a wonderful acupuncturist 3 months after my failed 2nd spine surgery to work w/the nerve related pain and I think this person was one of the people that helped save my mental health actually at this time. The therapy worked far better for some other problems altho the degree of attention was superior and it was relaxing overall. I had this over an extended period of time.

[grantwb1]

I was on lyrica and avinza before my fusion. I also tried nuerontin which pretty much enable me useless as I am an IT person. The nuerontin just killed my cognitive abilities. The lyrica did the same just no where near the same level.

I can sympathize with you drdobits, I am a year and a half out of my fusion and all was healing well still albeit slow it was steady. Now for the last couple days I have been having deep tightness in the buttock on the inside where leg meets cheek. I am also having minor sensation in my foot but it is not really centralized, one minute its the heel the next all of the outside of my foot. Why oh why!?!?!?!? This has sent me into extreme panic, I have not felt this level of nerve pain in months. I keep remembering my pt saying once the nerve pain is gone it will not come back. Sometimes I just feel you cannot win with my spine. I hope to god it is just some muscle/nerve that is really pissed and not my spine crunching on my nerves again. I don't need the meds again but if it gets worse I will be thinking about them with great reluctance.

I am for sure going back to my acupuncture as Dale led me to initially and I got the same results as her, I think that it was best tool I used post op!! Really don't know why but it worked.

Mad Love to all my Spineys!!

[Maria]

Grant,
So sorry to hear the nerve pain is returning. Hope it's very short lived.
I think "never say never" is a good saying when it comes to spine stuff tho I stopped Neurontin last summer after 12 years on it. I can't imagine being an IT person and trying to function on Neurontin (my husband is an IT person) and I've not tried Lyrica but have a few friends that take it and said they felt much better mentally taking that than Neurontin.

I wonder if an injection of 60mg Toradol IM to stop muscle spasming (if that's going on) would help you? It helps me with severe muscle spasms (cervically and lumbar). Perhaps if you see your PCP or go to your OSS or Urgent Care you might try it if you have no contraindications otherwise to this drug.

[dshobbies]

Have you ever noticed that spines are a lot like golf? It's a love/hate relationship. Love when going good, hate when not. I'm sorry you find yourself with a new pain and totally understand the panic, BTDT.

Also glad acupuncture worked the first time around and maybe will again. Keep us posted on that front as others hearing it from more than a couple of people might be more likely to give it a try. Good luck,

Dale

[jsewell]

I think i'm next in line for acupuncture. Thanks everyone for talking about it.,
judy

[ADR seeker]

Originally Posted by mmglobal

I call it Morontin. This class of drugs is very interesting. Some people get great relief from some of them, but not others. Some people get side effects ('brain fog') from some, but not others.

I took Neurontin for a couple of years. I did get the brain fog, but it was worth it for the relief.

I asked my doctor about the brain fog and he said... "oh, it doesn't do that!"


I posted online about it and got many, many stories, like the person who found their underwear in the fridge, but didn't know how it got there.

Good luck!

Mark

Doctors lie. There are a lot of drugs like Abilify that make people do crazy things like go on killing spree ala Columbine. If you want to know the truth about drugs google ask a patient. Doctors and drug companies lie.

[marijo]

I've been on Topamax and duragesic patches for a few years now. They stopped working, and I was reluctant to up the doses, so I am weaning myself off them. Right now I have been off topamax for a couple of weeks with just a few side effects. The duragesic is somewhat different. For a start I feel exhausted, and can't stop yawning. Mentally I am really flat. I'm just hoping this does not take too long, and that I will get through it. I've had two lumbar and one cervical surgery. I still have nerve pain on one side, (arm) and down legs. I guess its kind of chronic, and I will have to put up with it.

[Eddie G]

I have taken Neurontin for many years and I'd like to know if anyone has eye problems from it.? i have posterior vitreous detachment. itss like dry eye with HUGE floaters. Very annoying...
i mayy also be dehydrated because i wake up sometimes with a swollen uvula.

[dshobbies]

Eddie,

I can't say if N caused dry eyes as many other meds I take do - but my eyesight began to worsen, considerably with both N & L. Focusing on the computer or reading was greatly impaired and one of the main reasons I chose pain instead of this drug.

This is a known side effect of these drugs though certainly not affecting everyone. I take anti-inflams instead so as I see it, my choice is seeing or dying. I've tried getting off Celebrex many times, just recently was the 5th or 6th time, but the pain is too severe. Sometimes we have to make sacrificial choices - each of us must decide for ourselves.

Dale

[jbcool35]

All those anti-seizure meds messed me up. I couldn't handle any of them. Then again I seem to get every side effect possible from any med I take. Only thing I'm on is Valium and it is completely useless for me, unless you like having horrible withdrawal and no emotions. As many of you, I have tried everything and am terrified to have another surgery.

On a better not my mother n law takes neurontin and has no problems with it. If I take it I start to drool on myself.

[dshobbies]

Never heard of that one! Have you tried Lyrica? For me, no difference and I too and the side effect queen.

Good luck, Dale

[Maria]

When I tried Ambien to get to sleep I was so busy drooling on myself and then trying to swallow the drool that I couldn't sleep!!! So yes~ maybe not with neurontin however with a different drug I had the serious drool problem too!! I remember when my PCP asked me how I did with Ambien and I said I couldn't sleep because I was awake drooling and swallowing drool all night.. well obviously not the sleep drug of choice for me!!!

[jsewell]

I had a morontin moment today. I went for a walk in pajama tops, at least i had put shorts on earlier. I noticed it when i got to town, i live in a small town. I was pretty embarrassed, but continued my walk!
judy

[Eddie G]

Originally Posted by jsewell

I had a morontin moment today. I went for a walk in pajama tops, at least i had put shorts on earlier. I noticed it when i got to town, i live in a small town. I was pretty embarrassed, but continued my walk!
judy

I intentionally walked out to my mailbox in my robe today. A stiff wind could have got me arrested.

[mmglobal]

Eddie... nice to see you. I hope you are OK. Call me when you have a chance.... I'd like to catch up.

Judy, that is too funny.

Mark

[dshobbies]

Was that in unintentional pun?

[jsewell]

That was funny Eddie
Dale it took me way to long to get your comment to Mark
judy

[dshobbies]

Actually, I referred to Eddie's comment but it applies to both!

I've been married to Julius way too long. I wasn't always like this