Are there new medicines for neuopathic pain from spinal injuries?

My husband has nerve damage from an injury in his spine. He had fusions at C 5-6 and and plates at C 6-7. The surgery wasn't done as soon as it should have been after the fall so nerves were damaged and he has neuropathy (sp?). At night, his legs jerk so much he can't sleep. He has neurotin but it's not helping. Can you please tell us of any thing else he should pursue? He's in pain anyway (neck area and headaches) and this is really getting out of hand. He's not on any pain medications, just the neurotin.

     Any suggestions on what he should do?

     Are there other medicines that work better than neurotin? I thought I read that there were a couple of new medicines coming out in January for this problem  He also has lots of burning in his hands and feet. Thanks alot.

[CCF Neuro[P] MD, RPS]

Dear Mary:

Neuropathic pain is difficult to treat.  Neurontin has been shown to be effect for some types of neuropathic pain, such as in diabetes.  Some patients need higher dosages than other people so effectiveness depends on what does your husband is on.  We have gone up to 4 grams in some cancer patients.  Neurontin has been said to help restless leg problems, but traditionally tegratol or benzodiazepines are used.  We have had some good results with neurontin and restless leg.  So, alot depends on what is causing your husbands leg jerking.  You should talk to your neurologist who knows your husbands exam and EMG findings.  He/She knows your husband and should be able to direct you to the proper medication.

Sincerely,

CCF Neuro MD

[Joe Jan, 25, 2000]

I have read you message. I am not a doctor but have had the same injury as you have stated refering to your husband.
I had 2 surgeries and still, I am not pain free!!
The medications i am on consist of the following:
I was on neurotin, it seems that the longer you are on it , the least it works.

I am currentlt taking
Ultram  100mg every 6hrs
Celebrex 200 mg every 12 hrs
Nortriptyline 75mg at bedtime
Baclofin 10mg 4x's a day

These do not totally relieve the pain, but the comfort level is alot better, after 2years I am finnally getting some sleep.
Hope this helps.

[Comment by Rose]

I developed painful neuropathy after surgery also.  Pain all over my body and could not sleep  and had problems walking because of the pain and burning.  I've been on high dosages of elavil, paxil and neurontin -  nothing stopped the immediate pain.
    I was also having headaches, so my PC doctor prescribed 100 mg. of darvocet for the headaches, and jackpot!  the darvocet also stopped the immediate neuropathy pain and helped me sleep also.  Darvocet is the only meds I take - it doesn't take away all the pain - but I'm not in devastating pain 24 hours a day any more and  on darvocet at least I can function.

I take it every six hours and at bedtime and don't have the hangover like I did  from other meds.  I hope this helps.

[Mary]

Has anyone heard about new medicines in the same category as the neurontin?

[Lynn]

Hi Mary.  I have the same problem with my legs, or at least it sounds that way.  I have been told it's restless leg syndrome that the Doctor mentioned.  I take Permax, a medication used for parkinsins disease, and it works great.  It makes me quit sleepy and my legs seem disoriented if I take it and go walking anywhere (like to a mall) but as long as I take 1/2 to 1 pill in the evening my legs settle down.  I also have more problems if I am more active.  If you'd like to email me I'd be glad to talk with you.  Hope this helps.  Lynn  ***@****

[CCF Neuro[P] MD, RPS]

Dear Lynn:

Thanks for your comments.  We usually use the intial medications of benzos or tegratol.  However, the use of dopa agonist is now common and they work very well.  Depending on the patient we will often use these medications.  However, in patients who are taking certain medications, the use of DOPA analogs is not a good idea.  Each patient requires a full workup and medication history.  You are correct though and L-Dopa is used alot for restless leg.

Sincerely,

CCF Neuro MD

[clj]

Proper pain meds proper for pain.  I suffer from chronic pain and have been down Painscript Alley.  Neurontin is the best.  If you don't have insurance it'll break your bank, because it's that good.  For example:  I take 2 - 300mg caps - 3x daily.  The price tag w/o insurance would be a little over $400.00 per month.  It's pricey because it's good.  It's also an anti-convulsant.  If it shuts down convulsions, it ought to shut down pain.  It is designed for clockwork.  This means you better take it on a time schedule or it won't work.  I take mine at 5:30 am - 1:30 pm - 9:30 pm and sometimes a little earlier if I notice the first hint of breakthrough pain.  It reduces my pain by at least 75%.  Nothing you take will ever totally relieve your pain.  To get that, you have to take a pocket full of meds like I did which consisted of Neurontin, Baclofen, MS-Contin, and Mexiletine.  Ever heard of Mexiletine?  It's pretty good.  The drug has a "caine" quality and numbs from within.  It's a hard one to get used to, but... it works.  Note that it isn't for everyone, so ask your physician about it.  I'm no doctor, just a person who had a massive craniotomy and stereotactic radiosurgery just to shut down my dilemna.  I had the craniotomy 8 months ago, the radiosurgery 3 months ago.  Ironically, my pain is lifting like a veil... so along with it goes this many mgs of this and this many mgs of that.  I will never be totally pain-free, but I know one thing... Neuontin will remain in my bag because of the workhorse that it is.  You can "push" or "reduce" according to your personal needs.  Funny thing is... I never had to take anti-depressants to get through 7 years of increasing pain.  I just increased the Neurontin.  Now... I'm reducing it.  You all have a good one.  (That is if you take your pain meds via a strict schedule, because you won't have a good one unless you commit to one.)--(hey Doc RPS- how ya doin?) - CLJ

[Joann]

Mary,
Has any one ever suggested myofacial release therapy for your husbands headaches? It is the only thing that helped my headaches after fusion & plating on C4-5 and 5-6. I got sooooo much relief! Ask your doctor. He/she can tell you more how it works. Good luck.

[CCF Neuro[P] MD, RPS]

thanks for your comments.

CCF Neuro MD

[Mary Wilson]

been through many years of retractable back pain.  Have DJD, spondylolithsis and spurs,,, practically every leve degenerated.
So sick of codeine, soma  Prednisone,,,, 3 fusions hardware on an on.  Only 44, to young for this.  What am I facing in the future?  Am a nurse... must work... refuse to give in.

[CCF Neuro[P] MD, RPS]

Dear Mary:

Sorry to hear about your problems. Since I haven't examined you, know your history, seen the films, etc I can't predict your future.  I would discuss these things with your neurologist or neurosurgeon.

Sincerely,

CCF Neuro MD

[Greg]

Has any one suffered from a reaction to Neurontin that presents itself as burning in the legs below the skin? Sometimes it goes deep, all the way into the muscles and other times it stays on the surface.  When it's on the surface, it makes the hair on the legs stand up, like little sensors, waiting for contact with clothing to excite things and make the burning get worse?  I should say I've taken Neurontin for stenosis since June of '99. 5 months later, in October,'99, the burning started and has gotten worse.  Ironically, the main remedy prescribed for burning pain like this is Neurontin!  Docs, could the burning pain in my legs be from periperal neuropathy, poor lymphatic circulation or deposits of uric acid or some other mineral that is building up in the vascular system?  I mention a circulation problem because the burning, swollen feeling, in my legs gets worse when I stand up and hydrostasis(sic) occurs.  Any ideas?
  Also, folks, any one notice that the more neurontin you take, the more neurontin you need?  In other words, the pain seems to increaase to a level that is just ahead of the current dosage one is taking of neurontin. Because I'm afraid of breaking thru the 2700mg ceiling for neurontin, I dial down the dosage, suffer the pain for a few days, then attack the pain with a reduced dosage of neurontin.  It seems crazy, but the reduced dosage manages the pain quite well.  It manages it for awhile, until Mr. Pain gets out ahead of the neurontin again. Hence, the dosage creeps back up. Vicious circle eh?  Does any one else play these games with pain?  That also makes me wonder if I am treating a neuropathy or a drug addiction.
Pain management is an ongoing challenge for me,  But, for the last week I've been taking 50mg (3X) of Ultram along side my 300mg of neurontin (4X).  This mix seems to have settled me down a whole lot.  The Ultram seems to work against pain and settle down my acute neurosis regarding my neurontin dosage.  But, perhaps it's too strong a combination, or redundant, or hard to get off of?  Comments?

[CCF Neuro[P] MD, RPS]

Dear Greg:

No patient has described to me the sensation of buring with neurontin.  Itching has been reported and sometimes itching can be perceived as burning.  This has been reported in less than 1% of the patients taking neurontin.  I would speak to your physician and let him/her know.

Sincerely,

CCF Neuro MD

[Greg]

Thanks for your response. I did as you said.
The burning and muscle cramping that starts in my shin bones and calves and spreads upwards is brought on, immediately, by me standing up vertical, ie., putting my legs into a weight-bearing posture. My neurologist and internist contend the burning is part of the neuropathy that made me have a laminectomy at L4 and L5 two months ago and should go away with time.
But I don't think it's related. Here's why: When I'm standing, I can get immediate relief from the burning in my lower legs by kneeling on a couch, bed or on the ground. I stress to you that I kneel with my body upright, back erect, bearing all the weight of my body!
  Doesn't this point to something other than spinal stenosis? Is it some problem that originates below the knee in the bone, muscle or circulatory system?
If so, what?

[CCF Neuro[P] MD, RPS]

Dear Greg:

When you switch from standing to kneeling you change the position of your lower back and hips.  This may allow pressure on the spinal nerves to change.  

CCF Neuro MD

[Greg]

Greetings
Spinal nerves, eh.  Darn.
Isn't there some disease or condition of the lower leg that causes:  sensitivity to the touch, pins and needles, cramping and burning?

[Greg/gregory]

I just changed my name to Gregory.  There another guy on here named Greg with burning pain in his testicles that's not me, luckily.  I've got burning leg pain.
Anyway. After reading CLJs' comments, I'd like to throw open a discussion about Neurontin.  How you dose it.  What works best.  What it interacts with.  I'd like to hear some success stories.  Get some recommendations.  I've struggled with my own dosage for months now because every two weeks I develop a tolerence for the current dosage and have to raise the ante.
  Now I take 300mgs at 9am, 3pm, and 600mgs at 9pm.. It takes two hours to kick in and it seems to wear off in the fourth hour.  The recommended dosage is three times a day that's every eight or nine hours.  Do the math. That just doesn't work out. There's too many hours of breakthrough pain there.
"Raise the dosage," you could say.  But with the tolerence level increasing every two weeks, where does it end? How bout keeping the dosage lower and taking it every four hours? Or how bout a patch?  Also, how do you folks get 7 or 8 hours of sleep a night?

Please speak up. I know there are lots of folks out there who have this thing figured out. CLJ and other Neurontin takers I'd love to hear from you.
Gregory

[CCF Neuro[P] MD, RPS]

Dear Gregory:

We have used neurontin up to 8 grams a day.  We have to increase the frequency of dosing as with higher doses, the absorption becomes an issue.  Actually 900 mg is a very low dose.  There are very few drug interactions, since it is cleared by the kidney and not metabolized by the liver.  

CCF Neuro MD

[Susan]

Hi. I underwent a diskectomy & laminectomy 3 months ago to relieve pressure of the sciatic nerve caused by a ruptured L5-S1 disc. I was recovering w/out nerve pain until 3 weeks ago my physical therapist increased my activity & gave me a deep muscle massage in my buttocks. Now my nerve pain, though more intermittent, has returned to both legs w/near-chronic pain in my buttocks - especially the left side. I conducted my own test & my PT believes I have piriformis syndrome. I read that treatment includes bed rest, but I need to be active to heal my lower back, which has been healing.  My follow-up MRI shows no disk problem, but they only read the lumbar region - not the pelvic. I feel I'm in a no-win situation. It's been 3 weeks and my neurosurgeon says wait it out. Should I insist on a pelvic MRI and a nerve conduction test. The pain in my buttocks is pervasive and feels like a tightened knot. I'm not sure if I'm experiencing muscle spasm or nerve pain there, so I don't know how to treat it. No one is specific on ice versus heat. Please help.
***@****

[neroli]

I had a compression fracture of T6 a year and a half ago falling down stairs. I still get pain every day, mostly around the fracture but it can very from headaches and neck pain to lower back hips, ribs and shoulders.  I also often experience a yukky nervy aggitated feeling deep inside my legs and in my arms and shoulders, this is almost harder to deal with then the pain and stops me getting to sleep. It also makes me very stressed and I have no patience at all when it is bad, is this restless leg syndrome? I also experience nausea and sweaty hands along with dizzines, but not necessarily at the same time.  No pain killers seem to help the nervy sensation, Valium did but it also made me loopy. I don't want to have to take drugs every day. I am 26, and frustrated that I still can't sit very long or do normal things. Can anyone offer any good advice? My pain recovery time has gotten better when I do all except sitting. I already do physio, pilates and feldenkrais.

[CCF Neuro[P] MD, RPS]

Dear Neroli:

No, these symptoms are not restless leg syndrome.  Restless leg syndrome occurs as a feeling where the patient feels that they must move their leg.  Usually it occurs only at night, but we have seen and it has been described to occur at many different times.  I can not tell you what you have as your symptoms are too general.

Sorry,

CCF Neuro MD

[Sherry]

I have had back pain most of my adult life, and I just turned 35, in the beginning I was treated by my DR. for pulled muscles. Well at that time I did not have insurance, so alot of my medical help, relied on my low income clinic. I got so used to living with pain, it was natural to hurt. But last June, I couldn't sit, walk , stand, or do any lifting or  physical activities. I went to my PCP, and he sent me to chiropractor, that day, and he showed me how my spine was out of alignment and that the 4 and 5 in the lumbar was so "close" together. So I went to him for adjustments and that did not help,I went back to pcp and he sent  me to Neurosurgeon, and I was given CT and MRI, I have spinal stenosis, which I was told won't bother me til I am old and have arthritis, and I have DDD,and the Dr. told me that spinal fusion with titanium cages would be best. So I had laminectomy,discetomy, and the cages. Well I had that done in Mar. and I can honestly say the pain, that I go through now is nothing compared to what I experienced beforehand. I haven't had my scans at the  3 month point yet. But for right now, I don't know what it will be like tomorrow or next week but I am truly thankful,for the pain of today compared to the pain of this past adult lifetime. I don't know what the future will hold I am taking one day at a time but that is all we all can do. I am on meds. vicodein and Neurontin, I don't sleep well, but that is ok with me , just as long as I can function normally, like walk, sit, stand, or even bend far enough to go to the bathroom. I am interested in what exercises can be done, after surgery in the near future.And I just want to wish all of you , that are in pain, a pain-free future. I know all of the moments of physical pain as well as the emotional confusion, because of pain, no sleep and your mind not being able to function to the best of it's ability. So God bless all of you. And I will pray for all of you and your Drs. as well.

[bill]

Gregory
On the issue of Neurontin, I have found taking 800 mg. in three doses and 1600 mg in one dose just before bedtime along with some darvocet during the day seems to work.

So think
1600mg 9 PM
800 mg 7 AM
800 mg 11 AM with 2 Darvocet
800 mg 4 PM

This works about 90% of the time.  A few times 1 day in two weeks the pain breaks through and you go to bed early or a supplement of darvocet.

Hope this helps.
Bill

[Gregory]

Bill,  so cool of you to respond.  I didn't think there was anyone out there interested in talking about Neurontin dosing. You gotta have a strategy!
  I didn't know they had a 1600 one-dose.  How long have you taken Neurontin? Have you tried to get off it?  What was that like?  Are you still spiraling upward with your dosing or has it leveled off?  I'd love to talk more about breakthru pain too.  Does it take you about an hour or more to cover it with the darvocet?  It's good to know what the best fast acting pain killer is! Do you use the darvocet to settle you down (make you more relaxed during the day)?  Neurontin was making me so neurtotic, even deathwishy, that I take Ultram to settle me down.  I'm now a much nicer guy.
Let's talk some more.
Very cool to hear from you.

[Terry]

i hurt my back in 1991. i have had 5 back surgeries a fussion and i now have a spinal stimulator,which really helps alot. i was on all kinds of pain relievers the all help for a little while neurontin was one of the better ones.the only thing i ever had a reaction to was when i was getting nerve blocks for the nerve damage in my legs, the steriods had a bad reaction to the baclfon.i ended up having 9 lumbar punctures to relief the pressure in my brain, it got up to 480 and its suppost to be 100.i know my pain will not ever go away but i thank god for my good days. hey why does the barometer make the pain worse. i can tell when it going to rain 3 days before it comes. remember hurricane opal i felt her 3 days before she hit ground and the pain was horrible all i could do is cry.

[Pat]

Have been taking Neurontin for about 3 months; am not sure if it works or not.  I feel no great relief.  At first I took one at night only.  Then Doctor increased dosage to 4 per day (300mg).  He said to take it however it does the most good for me; one at a time, or take two twice a day.  The cost is high for my budget (on Social Sec. but not old enough for Medicare). Doctor got me enough for three months at four per day; I don't know exactly what program he used, but he seemed so happy to be able to help in some way after one year of pain, tests and thousands of dollars. I have DDD, spurs.  Pain starts in back at armpit level, spreads to underarms, down the arms to the wrist, up neck and to jaw.  Pain is indescribable, I just go off to be by myself if it starts when I'm with people.  If driving, I pull over for 20 min or until it leaves.  It is episodic; 7 or 8 gripping, gasping episodes per day.  Life-altering as I never thought anything could be. I have not-so-good insurance so don't feel I can see a Neurologist; here I am, within 40 miles of the Cleveland Clinic and can't see my way clear to ask to go there.  I'm thinking of trying accupuncture.  I do wear a TENS unit and this seems to help if I can 'catch' the pain before it gets going.  Does not eliminate the pain, but reduces the intensity somewhat.  The thought of spending the rest of my life this way is more than I want to think about.  

Now that I have enought Neurontin to keep the dosage even throughout the day, maybe I'll see some improvement.  Let us know how you're doing.

Pat

[Christine Dalman]

I to have been in a lot of pain I take vicadin and neurontin my dr said to take 3 100ml inthe morning and 2 100 ml befor bed I also take 1 500ml of the vicadin(hydracodeine)every 6hrs it seems to be working The other day I was watching Benny Hinn and I got up out of my chair at 5.30am after not being able to sleep and was just about pain free I had to do it repeatedly to make sure I wasnt dreaming.I thought I had been healed not this timebut I still have hope I am thinking its going to be the only to get better.I had spinal fusionL4-L5-S1 with titanium cages and screwsseems like nerve damage now so if you need surgery ask for all the new meds first because after surgery you have to try so many it takes a long time to find relief.

[Laurie]

Is there any laboratory evidence that Neurotin will later on in life cause problems? Some drugs are prescribed now that have been found to create even larger problems later on in life. Do I run that risk by taking neurotin? I am currently taking Celebrex and Ultram to control my pain.

[deshmalpatiyat]

Sir,
My daughter has injured right hand & right leg in road accident on
Date: 16.4.2000 and was unconscious at that time, after half an hour
She became conscious .on 20.4.2000 the microsurgery of right leg was performed by Traumatologist Dr. vithaldas at Jodhpur India.
We came to notice of right hand movement was not working after 10 days
Of injury.
Now half of right hand is not working with no movements and right leg is working all right. Doctors are advising for Surgery of spare nerve joint to be done. For that we need your advice

The scanning reports says that:

ENMG REPORT
Name:BABY NAYANA
AGE: 3 YEARS 9 MONTHS

PROCEDURE:
Motor, Sensory conduction and F wave studies performed on both
Side median, ulnar nerves and brachial plexus.

Results:
Encl.: Tracings of all recordings with relevant values.
Normal response on left side and on the right side motor fibres and
Sensory fibers not excitable with the exception, Right median
Nerve, where SNAP was elicited, which revealed severely reduced
Amplitude and sensory conduction velocity reduced to 26 Mts./sec.

CONCLUSION: findings suggest severe and total lesion right c5,
6,7,8,T 1 radicales.

Ref Dr. Suresh rao aroor.
Consultant Neurosurgeon
MRI Report gives Impression that ROOT AVULSION INJURY TO C6, C7 and D1 Roots with INTERNAL PSEUDOMENINGOCELE.

REF.Dr. UDAY D.PATIL MD.
CONSULTANT RADIOLOGIST
MANIPAL HOSPITAL
BANGALORE
INDIA

E-mail: ***@****