Nerve pain, help!

[quadmarie]

I have a sensitive spot on my shoulder that always hurts some. On days that it hurts a lot both of my arms will feel like they are on fire, and my skin above my injury iches and hurts. My shoulder has been looked at and xrayed. Nothing is abnormal with it. I was put on 300 mg neuroutin which made everything go away but then had to up to 600mg and now 900mg. The past few days has been really bad and taking advil or an extra 100mg is not helping. I here that 900mg neuroutin is not that much. Do I need to increase, switch meds, first talk to doc? Why do I have to keep increasing it? Will e-stem help? Help, this hurts!

[SCI-Nurse]

You should contact your pain doctor or the doctor who prescribed the meds. You might try taking two Ibuprofen or try Napoxen( i.e. Aleve) for the antiinflammatory aspects. But it does sound like neuropathic pain and an increase in Neurontin is probably needed.


CWO

[quadmarie]

Is there anyone in here on Neuroutin? How much and does it help? Thanks.

[nide44]

My son ( C-5 incomplete) takes Neurontin, 600 mgs 3 x day. He says that it helps with the stabbing pains and the 'buzzing' pains. It quiets the symptoms.
I have a neurologial problem (chronic axonal sensory polyneuropathy), and was taking Neurontin for 6 years before switching to Lyrica.
It quiets the jabs and burning as well as the bee-sting under the skin feelings (and other symptoms too).
It is not as much of a pain med as a symptom reliever, and is not really classified as a pain med - it is an anti-seizure med, developed initially for epileptics- but now commonly used for neurologic pain/symptoms.
It is not as readily absorbed/utilized in the bloodstream as Lyrica. Neurontin gradually needs increasing in dosage from time to time as the body builds up a tolerance to it. I was up to 4200mgs a day before switching to Lyrica.

[quadmarie]

Okay my doctor is switching me to Lyrica and Amitriptyline. I question if I need Amitriptyline. I want to take as few drugs as I possibly can. My doctor is weening me off Neurontin. I'm on 900mgs right now. I'm to take 600mgs for four days then 300mgs for four days then stop. While doing this I'm to take 1 75mg Lyrica a day then switch to 2 75mg a day after I'm off Neurontin. I'm supposed to take Amitriptyline everyday at night from the start. My doc said this is for my initial nerve pain in the morning and it will help the Lyrica work continuously, or something like that. I know it is an antidepressent and I don't want to take it if I don't have to. The side effects on this drug is awful. Should I take this or disregard it?

[David Berg]

I hope you have better luck with Lyrica, but in all honesty you really didn't give Neurontin an honest try. 900mg is a very low dose for treating pain. I'd understand not going higher if you were having trouble with side effects, but for many people the worst of the side effects diminish within a couple of weeks. There's a supposed "max" of 3600/day of Neurontin, but it's common to go well above even that when it's used for neuropathic pain. If it wasn't side effects limiting your dose, then quite honestly I have to wonder how experienced your doctor is in this sort of thing. It's common to combine it with a tricyclic antidepressant such as amitriptyline. Yes it's an antidepressant, but it can also have a direct effect on neuropathic pain. This is waaaayy oversimplying things, but consider than in depression you're trying to calm some nerve impulses in the brain. The goal in neuropathic pain is sort of the same thing, you want to quiet down some impulses...to calm things down.

Advil or other traditional pain meds might help "normal" pain, but they won't help neuropathic pain. Keep in mind that it's common for meds to only reduce the level of pain, not eliminate it completely. Your goal is to find the most effective solution.

[arndog]

Hi quadmarie !
I am on both Lyrica and amitriptyline with great success. The doses of amitriptyline used for chronic neuropathic pain are usually 25mg or 50mg a day. This is a very small dose - so small it won't have any antidepressive effects, so not to worry. For depression, the dose of amitriptyline is 3 or 4 times that much. Side effects of the amitriptyline that you may experience are dry mouth (anticholinergic effect) and some blurring of your vision, maybe. One of the great side effects is sleepiness and if you take it an hour before going to sleep , it really helps.
There is very, very good data that amitriptyline decreases neuropathic pain. Please try it, I know it quiets the 'fires' for me . I take Lyrica 150mg twice a day. I really have the neuropathic pain under control as long as I take these 2 meds. Plus amitriptyline is dirt cheap.
I hope my experience helps you.

[firesmurf]

just a suggestion for you marie.you mentioned that your pain,or the base of it is a rather small area?have you ever tried using the lidocaine patches over this area?i have a really horrid spot right under my shoulder blade that triggers upward into the c spine and then the base of my skull,when i get the lido patch just in the right spot(with help)on one area just under that shoulder blade,it will actually stop some of that radiated pain that will always go up eventually.this could also work for you too with what you described as the way your pain is actually presenting.just a thought.good luck,Marcia

[metronycguy]

Hi quadmarie !
I am on both Lyrica and amitriptyline with great success. The doses of amitriptyline used for chronic neuropathic pain are usually 25mg or 50mg a day. This is a very small dose - so small it won't have any antidepressive effects, so not to worry. .
i take 10 to 20 mg of amy, it works well. and one of the better side effects it definately help with sleep and qwells the pain, i take it earlier in the evening around 8 pm, i find if i take it latter such as a hour before sleep,(11pm) i feel very tired in the morning when i need to get up at 8 or 9am

[quadmarie]

I've heard that Lyrica won't have a tolerance buildup like Neurontin. Is this true?

[bbs]

I was on neurotin, but then it suddenly didn't work :(
I' m now on Lyrica...but you know what, I mean I'm not going to stop taking it, because I suppose it helps a bit, but really, I can't stand the pain any longer. I wish I knew the answer, I cannot believe others are in the same pain as I, that's not a good thought.

Take special care. I also have massages. But sometimes even that hurts me, but usually, it relaxes me nd takes my mind off the pain, even if it is only for an hour. I'll take a pain-free 60mins anytime.
Oh, the thing about massage therapy, my insurance is now going to cover some it! So, that makes it even better :)
You ought to try it if you can. good luck with your pain. Sorry you are suffering so. :(

bbs

[David Berg]

I've heard that Lyrica won't have a tolerance buildup like Neurontin. Is this true?
I don't take Neurontin and I'm not sure about a tolerance build-up (I don't usually hear about that happening), but I have heard from people who say they felt like it just wasn't working anymore until they quit taking it, then they realized just how much it had been doing. Also, some people say it makes all the difference in the world to take brand-name vs generic.

[quadmarie]

This amitriptyline is knocking me out. I barely function in the day because I'm so tired. Anyone else get this way?

[metronycguy]

i also kinda hate amy for this reason, to me it is a drug of last resort when the pain continually disrupts my sleep and my nights are hell. my pain increase when i lie down,
how much amy you taking>? i take between 10 to 20 mg a night, last couple night 20, will try 10 tonight, amy is one of those meds that takes a while to get a blood level to work, so when you stop taking it you still get pain relief for a while.

[quadmarie]

I don't have pain at night just some in the morning. I have to skip it tonight because I have a test Wed. and need tomorrow to study without falling asleep. Does the sleepyness ever wear off?

[quadmarie]

I am still weening off meurontin and my nerve pain is getting bad without it. How long is a good trial of Lyrica to know if it is going to work or not? Saturday I will be only on Lyrica.

[metronycguy]

i don't think you need to wean off the neurontin to start the lyrica, many people just switch

[firesmurf]

hi metro,my PM,when weaning off an anti S med and when i went onto lyrica,i did have to taper down on the neurontin first,but she had me actually start the lyrica while i was at the very end of the neurontin taper,then eventually just was on the lyrica.it just lessens the risk of side effects to do it this way since neurontin and lyrica kind of work a bit differently.its just a much smoother transition for the patient and their brain.basically,any med you have to taper onto,you also do have to taper off of.marcia

[quadmarie]

I'm finally off nerountin and am strictly on lyrica and amy. My muscles in my neck and shoulders ache and I'm having nerve pain on my skin where I've never had nerve pain. My burning sensations went away but I hurt all over. I am tired all the time also. When I was on merountin I felt normal, no pain. Can anyone relate?

[Lola_wheelie]

Is there anyone in here on Neuroutin? How much and does it help? Thanks.

i'm on neurotin ( 900 mg ) and it has helped me a lot with my central pain .

i think you should talk to your doctor

i wish you the best :)

hugs, lola

[arndog]

Quadmarie - be patient with Lyrica for a few weeks. It took me about 3 weeks till the side effects went away. For me , this was the dopey feeling.

Amitrypt drowsiness - try taking it earlier in the evening if you are waking up sleepy in the morning. Maybe try taking amitrypt at 7 or 8 pm. The down side is you might be getting sleepy at 10pm which may or may not be a problem for you.

[firesmurf]

marie,have you ever tried the lidocaine patches i mentioned in another post?they cannot cover a huge area,but i have found that the 'base" or trigger area in my shoulderblade and lower neck area,when i use these,really help to stop the radiating type of pain from going off on its little tangent.just a thought.there also is lido ointment which i have found very helpful up into the lower back of my hairline where i cannot actually place the patches.i use alot of more topical types of treatments for some of my pain since i have nothing but wierd bizarre side effects from like all of the anti S meds now.these really do help me alot in just putting some smaller spot 'fires' out on my skin.these little areas really do appear,for me anyways,to trigger the more radiating out types of pain.if i can 'contain' those areas with the lido,it just seems to,most of the time,stop the other pain from getting as nasty as it can sometimes get.i do wish you luck in finding something to help your pain.keep us posted,Marcia

[quadmarie]

I don't think it's just that spot. I have pain even when that doesn't hurt. My pain on lyrica is tolerable but when I was on nerountin I had zero pain. My skin hurts now and it didn't before. I was on 900mg nero. I think my doc should have increased it before putting me on a new drug. Grrr

[metronycguy]

how many days have you been 150mg lyrica now ,and 10 mg of amy at night?
your dose of neurontin was relatively low, which is a good thing, i have heard of people taking both neurontin and lyrica , not sure for how long though

[craig]

Is there anyone in here on Neuroutin? How much and does it help? Thanks.

I am on 3000mg of Neurontin a day for ten years and so far no problems however I am 27 yr/post and mixing it with other pain meds is not working out for me. It mixes with small doses of narcotics but as I'm sure you know narcotics do nothing for central pain.
So far I have been unable to go through the transition from Lyrica to Neurontin. I have found Paxil and Xanax have eased the burning a lot so there is that out there too...
Good luck quadmarie

[metronycguy]

but as I'm sure you know narcotics do nothing for central pain.

we have to get rid of that myth. narcotics defiantly works in my case. doubling my lyrica to 300mg hasn't really helped, oxycodone at night when it is really screaming bad pain is the only way i have gotten any sleep for the last 3 or 4 years.

[quadmarie]

Yeah! I'm too impatient. Lyrica is finally working! I'm still sleepy and have dry mouth but no pain.

[David Berg]

we have to get rid of that myth. narcotics defiantly works in my case. doubling my lyrica to 300mg hasn't really helped, oxycodone at night when it is really screaming bad pain is the only way i have gotten any sleep for the last 3 or 4 years.
You are one of the fortunate ones. I never say (well, try to never anyway) that narcotics don't do anything for neuro pain, but I do say they're notoriously ineffective. I am grateful that some people do have luck with them.

[seVen]

I wish they knew all of this stuff 18 years ago. I complained about my body draped in fire from the stomach down. mostly my belly, left leg and feet and was told it was in my head. They stuck a camera in my stomach to see if I had ulcers, plus other things that drove me nuts. I couldn't sleep with anything touching my belly. I still burn and suffer from it, but got put on Amitripyline (50 MG at night) some years ago and it helps a lot. Or maybe I'm used to it now, but I think not. I get tired during the day if things are slow, but I take 100MG of baclofen, 15MG of Oxybutynin and 5MG of diazepam during the day too.

7am 20MG Baclofen, 5MG Oxybutynin, 5MG Diazepam
12pm 20 MG Baclofen
3pm 5MG Oxybutynin
5pm 20MG Baclofen
10pm 40MG Baclofen, 5MG Oxybutynin, 50MG Amitripyline

Probably enough to knock down a horse, but my body adjusts for it over the years.
I have noticed I feel worse depending on the weather too.

[rollin64]

You are one of the fortunate ones. I never say (well, try to never anyway) that narcotics don't do anything for neuro pain, but I do say they're notoriously ineffective. I am grateful that some people do have luck with them.

oxy seems to help my neuro pain somewhat. or maybe it just gets my mind off it some because it makes me feel better.

[quadmarie]

Okay, I lied it worked for like two days and then I started feeling my nerve pain come back. My skin aches sometimes and tickles sometimes. I called my Dr. and she told me to increase it to 300mg. Ever since I started this nerve I think on the right side of my neck down into my shoulder tickles all the time when I move my neck or arm. It's about to drive me crazy! I hope it doesn't work so I can ask to get back on neurontin. I want to act as my own doc sometimes and say "I want to do this." Oh well. This whole thing is a pain!

[mike bauer]

Lyrica seems to help me in conjuntion with Oxycontin and Percoset for breakthrough. This combo seems to work well.. then into the mix they say Effecxor or Cymbalta works as well. But Cybalta costs so frickin much.... I have gone back to Effexsor. I would truly like to try adding Cybalta to the mix... cause its clear... the MIX is it! Thats what works... find the right 3-4 drug combo that works. Nuerontin to me is junk... ust makes you sleepy and no real pain relief. But some poeple, Like David Berg swear by it???? Who knows???? Try the combos.... thats the best we can dp for now. No magic bullets are avalible. ust like no cures or miricle suguries ar avalible... or we all wouod be doing it. No big just over the ridge fixes or drugs or surguries. Its real simople, we have the one injury (illness) that is in Gods hands... medicine cannot fix this as yet. They are slowly making attmepts... but not much has really happened. Miami Prioject... joke. Look what has been promised, look what has it delivered???? A lot of people living large thyat about it. MSB.

[David Berg]

Lyrica seems to help me in conjuntion with Oxycontin and Percoset for breakthrough. This combo seems to work well.. then into the mix they say Effecxor or Cymbalta works as well. But Cybalta costs so frickin much.... I have gone back to Effexsor. I would truly like to try adding Cybalta to the mix... cause its clear... the MIX is it! Thats what works... find the right 3-4 drug combo that works. Nuerontin to me is junk... ust makes you sleepy and no real pain relief. But some poeple, Like David Berg swear by it???? Who knows???? Try the combos.... thats the best we can dp for now. No magic bullets are avalible. ust like no cures or miricle suguries ar avalible... or we all wouod be doing it. No big just over the ridge fixes or drugs or surguries. Its real simople, we have the one injury (illness) that is in Gods hands... medicine cannot fix this as yet. They are slowly making attmepts... but not much has really happened. Miami Prioject... joke. Look what has been promised, look what has it delivered???? A lot of people living large thyat about it. MSB.
Consider switching from Percocet to Percoden. The first has Tylenol, the second has ibuprofen. It's best to avoid Tylenol for long-term use.

Also if you're looking for a cheap anti-depressant alternative, have you considered elavil? I understand it can be had for a lot less than some of the other stuff and I know it works well for some. As for me, I don't use Neurontin or anything else, I just know a lot of people who have at least some success with it. I know it's no cure-all, but it still one of the first lines of defense for neuro pain.

Mike a lot of other people here are aware of this, but perhaps I should point out that I'm not SCI nor do I have neuro pain. Well there is a touch of paresthesia in my toe from nerve damage that happened in a weird accident, but ironically that happened after I started moderating here. Wise asked me to help out here several years ago and I've been bumming around ever since. He asked me to help out here because of my work on my other website: http://painonline.org

[ezdoesit]

is the type of pain that yall are refering to is it a squeezing type pain in your stomach and what meds would be recommended for relief

[mhscaptain72]

Is there anyone in here on Neuroutin? How much and does it help? Thanks.
i had extremely bad nerve pain. i am now on 1200 of neuroutin three times a day and it works great for me

[ezdoesit]

I Suffer Frompain In My Stomach Its Like A Squeezing Feeling I Was On Neuronton For A While 600mg A Day But After A While It Wasn't Working From What I've Red On This Web Site 600mg Wasn't Nothing I've Herd Yall Talk About Lyrica.whats My Best Choice To Make My Days Comfortable.please Reach Out To A Man In Need

[hotelbuoy]

I was on Neurontin 900mg /3x's day, and it just made me too sleepy while i was going to school. I could hadly pay attention to my professors when in class or even studying.

I have no experience with the Lyrica, but i am now on Amytriptiline, just as others, only at night. Now i have a bit more burning pain, but it seems to better for me since i dont take it throughout the day and am not soooo sleepy. I still get the piercing pain but not as severe as taking nothing.

Remember pain management does not need to be only meds. Keeping yourself active with a good social network is important to help get your mind off the pain. I tend to stretch a lot when in pain and find ways to redirect my mind to other issues is a plus.

Try to find an activity that you can do distract yourself. Everyones mind and body responds to pain differently.

I hate taking meds.....But, not taking them is just as bad as not managing pain at all.

Look for as many approaches to pain management as possible to be happy. Feeling pain is not all bad. If i didnt manage it i would just be a grumpy bastard all day.