Neurontin - Gabapentine

[surferjoe]

Dear MHI:  This is the first time Ive been in here.  I have complex partial seizures, The Veterans Affairs MedCntr (VAMC)currently has me on 500mg Dilantin, 2000mg Divalproex, and 1200mg Gabapentine.  I still have seizures.  However, I am very sensitive to Dilantin, 25mg puts me at toxic level, and the Gabatentine, has caused all sorts of side effects such as "seeing signs", extreme anger moods, very drowsy, Amnesia, loss of balance at times, and impotence.  The VAMC will "NOT" take me off of this medication. It seems all they want to do is increase the dosage even more and they told me, it is a med that once you start the med, you take it for the rest of your life.  You can only increase it, and it can never be decreased.  My neurologist placed me on this because my hands would tremor when I did my art-drawings. They; meaning MDs and Rx's, will NOT tell you of side effects or consequences.  Some people tell me, You can not be taken off of the medication. I want these side effects to stop.  Can you be "weened" off of this medication, and if so, how long should the time be with my dosage level, will the side effects disappear, and are there any long-term (lifetime effects) caused?

[CCF-Neuro-M.D.-JT]

I'm not quite sure what your doctors meant when they reportedly told you that you can't come off of the meds.  Perhaps they meant you will need seizure meds for the rest of your life rather than those specific meds that you're on now.  At any rate, there are many other options available for antiseizure meds in the year 2003 depending on what type of seizure you have. For complex partial seizures, Keppra is a newer drug with less side effects.  Depakote and Dilantin are used for generalized seizures or complex partial seizures that turn into "grand mal" seizures and are known to cause tremors especially in combination.  Topamax and Lamictal are other options.  These of course are more expensive, but sometimes the side effects are better tolerated and you don't have to check levels.  When we switch meds, typically we like to taper one med down at a time while slowly starting another one.Your doctors will have to decide which to come off first and how they'd like to do it as they know you best and there's really no set way.  If the symptoms you're having are really caused by the meds, I assume that the vision changes and mood disorders would resolve after the meds are stopped. There are however more serious side effects such as liver problems with the depakote and cerebellar problems with the dilantin that may be irreversible.  For more information, you really should try to talk to your doctors. If you're having problems, consider getting a second opinion.  Good luck.

[lil sunshine]

I was taking up to 1800 mg a day and in my case it was causing me to have seizures. I was put on neurontin for pain maintience and then I started having seizures, they also found brain lesions but nothing has been done for me so far. I was advised by a neurologist in Tx, I live in VA, that when I got home from my surgery that I should QUIT taking the neurontin.

I have not had a seizure since that time. By the way these were military doctors I saw at Walter Reed and Wilford Hall.

Bonnie

[bklk]

I asked this summer a question about particle debris from artificial discs near the spine and nerves.
37 yr male with no other health issues.
Dec. 20 th I had an L5-S-1 implant placed.  I feel great in my back but 10 days post op started getting pain and numbness in my foor that seems to start with the big toe and then involve the whole foot and when really bad some of the lower leg. I had this pain at times pre op. My surgeon feels it is due to a stretching of the L5-S1 nerve rooots as they restored the disc space to original height after 7 years collapsed.  I question this because it started so long ( 10 days?) after surgery and seems to start in the toes and spread up vs. down. It is also there when I wake and gets better as I mill areound to an extend but gets bad if I do too much  Wonder you thoughts on other ideas.

I’m really thin (6’ 145lbs).  To protect from axial spine pain both before and after surgery I tended to sit on my heals.  Is it possible a skinny as I am to compress sciatic nerve in butt or posterior thigh doing this.

I’m vegan and had B12 checked out as Ok. But wonder if B12 could do this;  PCP thinks not since it is not bilateral is presentation?  Is the surgeon’s suggestion most plausible?  Any other neuropathies that might present bilateral that would
Just want your thoughts.  Thank you

[bklk]

excuse the above error while attemting to post on main forum.

[lil sunshine]

Just curious, but is your implant made out of metal? I have a limb salvage prosthesis of cobalt{which we have since found out I am allergic to} and other metals.

I have had MS symptoms before my surgeries but now I am over run by symptoms. Metal allergy/toxicity is thought to be a cause of MS and other autoimmune diseases.

Bonnie

[mikesgirl]

I've had experience 'weaning' a patient off of gabapentin and yes, it can be done.  You aren't stuck with it forever, especially if you are having problems associated with it.  Please get in touch with a pharmacist and your doctor to work through the weaning process.

[shamrock]

mikesgirl,

I agree w/you.  I take Neurontin & my neurologist told me if I ever have to stop taking it I will have to wean off of it.

Good luck to surferjoe!

Shamrock

[surfsup]

Hi there, I have just joined and I have seziure disorder too along with neroumusclar diseases resulting in paraneoplastic syndrome and lymphoma as a bonus! I am replying to Surferjoe:
Yes you will be on a seziure drug for life but if the one or the comb of several anti-seziure drugs.  If it is not holding you they should try another, weaning you off what you are taking and switching to the new and your nero doc should be the one to do that.  There are new drugs out but I am in the percentage of folks that has breakthrough seziures and the only drug that can hold me the best has been Tegretol and I take 9 200mg each day.Two 200mg at 6a,12n,3p,and 3 200mg at bedtime. This schedule works best for me.  I have seziures because of a head-injury.
Finding the right drug for your seziures can be a nightmare but once you have found right drug or combo of drugs it gets better but you must take your medicine on time everyday.   Good luck

[snowgoer]

I was wondering if neurontin needs to be weaned even if it is not being used for seizure control? I take up to 1800mg daily for nerve pain, but was never informed that it should be weaned. If so, what type of weaning should be done?

[mikesgirl]

I honestly do not remember precisely how the weaning was done, only that it was not directly withdrawn.  The pharmacist who helped with the process, since the doctors at the time were unreachable and the side effects were so horrendous, was on neurontin herself for pain, and told me how to do it.  I do know that the greatest concern when withdrawing any seizure med is that the seizures will return, and often with more severity than they were before medication, but with a pain problem, it would be wisest for you to simply ask your doctor or pharmacist what to do if you feel you want to stop taking neurontin.

[lil sunshine]

Hi I was on 1800 mg a day for pain control, I actually started out at the usual dosage but then I started having neurological problems and seizures so the neuro doc says "great, we'll just up your Neurontin to take care of the seizures too" Only it didn't work that way. I think it's due to my metal allergies and if you check any medications you've been on you will be amazed at what's in them, even the inactive ingredients.

Anyway a neuro in a different state advised me to quit taking it , only he never said anything about weaning myself. I just quit cold turkey and haven't had a seizure since that time.Of course I am being worked up for probable MS because of my symptoms and brain lesions so the seizures could have just been another weird thing happening.  
Bonnie

[oxydetox pete]

I suffer from trigeminal nueralgia, and now chronic back pain. I was taking 1200-1800mg of nuerontin and 1000mg of tegrotal for my nueralgia and would just stop it after a few days without any pain with no symtoms. Docs said I should keep taking them, but i figured no pain didnt need them.

[xerxes]

My friend was taking 500 mg a day of Neurontin.  His stomach has been injured and he finds it very difficult to eat and digest his food.

Does anyone else have this problem? He is thinking of suing the Neurontin maker.

Do you have any information or input, please as to symptoms caused by taking Neurontin?  Thank you.