Stop taking Neurontin?

[David Berg]

Has anyone here ever used Neurontin (for pain or any other reason), but decided to stop taking it because of side effects? I'd like to hear about side-effects that made anyone decide to quit using Neurontin.

David Berg

[SCI-Nurse]

My father takes Neurontin due to severe peripheral neuropathic pain due to shingles (post-herpatic neuropathy). He is 79. He has recently felt mentally "foggy" and after talking to his neurologist it was decided that there was no other cause that could be determined. He has cut his Neurontin from 1500 mg. daily to only 600 mg. He feels more mentally clear, but his pain is worse. I also know a number of people with MS who have stopped for this reason. (KLD)

[Joe B]

David

In 1994, I was seeing a Dr at NRH in DC Lauro Halstead for memory problems and he was trying to get me off Valium and onto Neurontin. I was at 300 mg a day when he retired. No one else at NRH seemed to know what to do next so I stopped. Not because of side effects but I was not getting any pain relief.

I went back to the Valium and Elavil I had been taking. In 1999, my memory was really bad. My Neuro doc said it was the Elavil and had me switch to Neurontin. I take 1200 mg a day and it is as effective as the Elavil though I can tell it affects the pain sense in a different way.

It took about 6 mos before I had a significant change in my memory. Its been a couple of years and my memory is almost back to normaL.

The Neurontin sometimes causes my stools to be like paste and thats a problem. Also I suspect there is a tendency to gain some weight on Neurontin but it seems to stop after a few pounds.

I've read at other boards where people said they were lightheaded or dizzy after just starting Neurontin and quit taking it. I didn't have any problem like that.

I cant believe they would quit taking Neurontin if they had a significant level of central pain. When it first started in me in 1988, I told my wife I could stand the pain but I didn't know for how long.

I've posted before that I got quite a bit of relief from baclofen and Valium and more with Elavil though Elavil can leave you loggy sometimes. Once in a while when the pain levels go up, (bad weather, cold fronts) I will take an Elavil on top of the Neurontin and it gives aa boost to the pain relief.

I still find that central pain is not well known but at least when I tell a doc about it now they can look it up. Same thing with AD. I had to have a urologist scope me and he figured he didn't need to use an anesthetic because I dont feel pain at that level. Dont know what my BP was during the scoping but I made them sit me up which helped relieve the thundering headache some. My BP was 160/120 when I went to recovery. That's up from my usual 85/70.

I'm surprised few people post about how they cope with the pain. I found that any movement of clothing or weight on my lap increased the pain so I dont move much and cant rest my hands in my lap. In winter I wear thermal underwear which provides some protection from movement of clothing. I can stand heavy/deep pressure though. If my wife sits in my lap it doesn't bother me anymore than without her. Laying on my stomach, can calm the pain down some also.

I've been through a pain trial at Johns Hopkins. They were trying methadone, behavioral modification and placebo. I got the placebo. The behavioral stuff, imagery, visulaization, etc. helped some but they were hard to keep up. After the study was over, they let me try the methadone. I couldn't take it because it caused immediate and persistent constipation for me. Didn't seem to help the pain either though I never got up to a high dose.

My wife bought a down-filled comforter and we found that gives me the least amount of irritation and pain. Keeps me warm but is very light.

I hear some people report they get relief from Oxycontin but I dont think it is effective for their central pain.

Anyone have experience with Oxcontin?

Joe

Joe B

[calliemimosa]

My husband takes 900 mg Neurontin daily for pain and muscle spasm but has never c/o any side effects. He takes other meds too ie. MS Contin, Baclofen, Dantrium and Soma. He is 2 years post SCI. He has constant pain that has been diagnosed Nuerogenic. There is not anything that relieves his pain once he gets to hurting bad except PK-5 which is a topical liquid we get at Walgreens Pharmacy over the counter. It is great stuff and has a wide range of uses.

[David Berg]

Well, I hadn't intended to wait more than 24 hours before posting an explaination about why I asked if anyone had stopped taking Neurontin, but yesterday's events and a deadline at work have had me a little tied up.

Recently I've had a little curiousity about how Neurontin works in the body, especially it's not metabolized by the liver to speak of. I took a look at the drug information straight from Pfizer, available here (http://www.pfizer.com/hml/pi%27s/neurontinpi.pdf). On page 15 it lists the adverse effect to the nervous system, including, among other things, paresthesia (a weird buzzy or uncomfortable feeling usually associated with mild injury to peripheral nerves) and dysesthesia (the horrible, complex, bizarre burning from more serious nerve injury). Each of these symptoms is caused by nerve injury. They also list subdural hematoma as a side effect.

Now I've also heard from a man who feels positive that his central pain was caused by Neurontin. His pain started within a week a low dosage, and he stopped taking it within a week. Another doctor said the pain couldn't be caused by the Neurontin and talked him into taking a much higher dosage. His pain increased sharply within days and he quit taking the drug, but his pain remains with him.

I want to strongly emphasize that I am NOT advising or encouraging anyone to stop taking Neurontin because of what I'm posting here today. These are rare side effects, and Neurontin provides some people with neuropathic pain their best hope of any relief. But, I would advise that if you are taking Neurontin and notice your pain is becoming worse, talk to your doctor immediately. And make sure they pay close attention to the list of side effects. In fact, I'd encourage that you browse through the rest of the drug information sheet from the link posted above.

David Berg

[alan]

Because of constipation, I've never gotten to high enough dosages of any opiate (methadone, MSContin, or Oxycontin - tried 'em all) to relieve my pains. I plan to try the long-acting dilaudid when it comes out, along with shitloads of laxatives, if needed to reach an effective dose.

[David Berg]

I'd encourage you to try whatever your doctor considers safe to try. Heaven knows I would.

I don't know what type of pain you're experiencing, but opiate receptors generally are "out-to-lunch" when it comes to nerve pain. Of course, many people with central pain or some other form of nerve pain also have other types of "regular" (nociceptive) pain that will respond to opiates and other pain killers.

I wish you the best.

David Berg

[T Hansen]

I suffer from severe neurological pain. About 3 months after my accidet, which turned me into a T7 complete. I started suffering from pain so severe I wound up in the local Emergency Room. The answer given to me was "we can keep you doped up on narcodics here or you can do it yourself at home". A pain management doctor I contacted recomended I try a drug named Neurontin, he's had good results with other patients. He stated organ damage from long term use was minimal to none. But unfortunately forgetfullness,tiredness and weakness are the most common side effects. He weened me on to the drug over a three week period. Durring this time I constantly felt unbelievable tired. Eventually my body became somewhat used to this dosage. I take 3600mg per day, the maximum recomended dosage. On a scale of 1-10, it reduced my neurological pain ( on my scale)from a excruciating 8 to a nagging 4. Yes I suffer from the side affect mentoined by my Doctor,but it also makes my daily life bareable. Sincerely, afellow SCI pain sufferer

[bigreel]

I've been a T10 incomplete for 2 years. Had terrible neurogenic (no specific source) pain that Drs. treated ineffectively with various pain killers, including Neurontin. When some of the top S. Fla. Drs. said they really couldn't help tried acupuncture. I figured a few billion Chinese couldn't all be nuts for 5000 years. Three treatments and the pain disappeared, never to come back. I don't believe in juju beads, copper bracelets, magnets or whatever, including this, but it worked.

[martha]

I've read the other posts that some of the side effects can be memory loss, light headedness or dizziness. Has anyone encountered any others? My husband has had several episodes of vision problems he describes like snow blindness where for a bit he can't see anything but bright white. I'm wondering if this could also be the neurontin or if it's yet another problem to identify. Thanks for any comments or help.

martha

[David Berg]

Yes Martha, I have heard of those effects from Neurontin. You really ought to look at the drug information from Pfizer about Neurontin. (http://www.pfizer.com/hml/pi%27s/neurontinpi.pdf)

The information "sheet" is 19 pages long, and the information on adverse effects is most of the way back. I remember that the adverse effects on the nervous system is listed on page 15, so the rest of the effects probably start a page or two before that.

I hope this information helps.

David Berg

[martha]

David, thanks for the link. Reading that is enough to scare a person from taking the drug at all. Is there anything else you're familiar with that works as well but has a few thousand fewer side effects? http://sci.rutgers.edu/forum/images/smilies/eek.gif

By the way, congratulations to your family on the impending new addition.

martha

[David Berg]

Martha,

Neurontin hardly stands alone in having a long list of scary possible side effects. I didn't post the link to scare you off of the drug, but only to help you see what might be possible. If you take a look at other drugs and their effects, you'll see that a long list of possible adverse effects is not uncommon.

As far as other drugs that help without as many side effects, the short answer is, no, I don't. The better answer is that everyone is different, but Neurontin seems to help more people across the board than most other stuff on the market. I continue to advocate for additional pain research to help develop a new treatment. There are some exciting discoveries over the last couple of years, but the solution is not just around the corner. We just need to provide the funding to make sure that the research keeps making progress.

David Berg

[bigreel]

Was given this to relieve a "crushing" pain in my lower back after T10/11 disk surgery. Dr. prescribed 2 a day and I turned into a zombie. Finally got relief at 1/2 a pill a day without the side effects. A cure came with three accupuncture treatments; I then went off Neurontin for good.

[Laurie290]

I have taken Oxcontin,MScontin & Diladid for a few years now til I have my surgical pain pump installed this spring.I am still using Dilaudid for breakthru & to top off pain til I am able to find the right amnt of relief from pump.Also used neurontin for some time as well.For the last couple years I have had increased eye probs,weakness,severe memory probs, list goes on & on.I take 1 Senocot S every nite to combat constipation & keep things moving.when I had the severe nerve damage,I have had probs w/ bladder,bowel,& menstral probs ever since & doubt will ever get them bk completely!Sometimes I think I am losing my mind w/ memory loss,& complications suffered over last 10 yrs dealing with pain issues,different drugs & such high dosages.God only knows what the long term effects has on our systems! I think depression,frustration ,anger & resentment come naturally to those of us fighting the battle of pain issues
Laurie

[Kathi49]

Wow David,

Thanks for posting this! I haven't read every post but I also swear Neurontin caused some burning, parathesias, etc. I NEVER had this UNTIL I took Neurontin. I was on it for about 3 years and started off with 300mg and could barely tolerate the SE's. My Neurologist had to keep taking me down, down, down until I was at 50mg and I STILL couldn't handle it. I kept telling anyone who would listen that it caused an INCREASE in the burning sensations. But most people thought I was nuts because it is supposed to help with it. Well, anyway, I stopped it a long time ago and NEVER want to go back to it. And I agree, that's not to say that it doesn't help alot of people. But I was always amazed at the doses people can take and do just fine. So, I thank you for finding more info. on it.

[mr_coffee]

Has anyone here ever used Neurontin (for pain or any other reason), but decided to stop taking it because of side effects? I'd like to hear about side-effects that made anyone decide to quit using Neurontin.

David Berg


Yes I did, I was on 1400mg and I was so tired and felt like hell the whole day about 5 months after I was on it, I stopped, not cold turkey but I just weened myself off of it.


Warning it is super painful, but soon the pain turned into extreme itching but now I only get itchy when its cold or I'm sick.

[Mona~on~wheels]

I was taking it 24 x 7 but kept falling asleep.
Now I only take it in bed, to sleep better.

[quadvet]

I was just researching this subject (again!) and found this site with a very comprehensive list of the side effects, many I experience. Note the first point that the drug is not metabolized by the body and must be eliminated solely through the kidneys, not a good thing for us.

http://www.drregpeart.org/neurontin.html
Neurontin is not metabolized by the body, i.e., it does not produce active or inactive metabolites. It is eliminated solely by renal excretion.

Side effects: Drowsiness, dizziness, fatigue, muscle tremor, vision disturbances, indigestion, weight gain, mood changes, hallucinations, decreased kidney function in over 60s, diarrhea, dry mouth, nausea, vomiting, peripheral oedema (1), anxiety, abnormal gait, amnesia, nystagmus (2), asthenia (3), parathesia (4), abnormal thinking, emotional lability (5), hyperkinesia (6), infections (urinary and upper respiratory tract), dysarthria (7), arthralgia (8), diplopia (9), amblyopia (10), constipation, flatulence, impotence, leucopenia (11), depression, psychosis, headache, pancreatitis, incontinence, alopecia (12), allergic reactions, rashes and angioedema (hives), chest pain, palpitations, movement disorders, thrombocytopenia (13), tinnitus (ringing in the ears), acute renal failure, purpura (14), changes in blood pressure, seizures, confusion, impairment of mental alertness, coordination problems, ataxia (15), coughing, rhinitis (16), pharyngitis (17), nervousness, myalgia (18), back pain, dental abnormalities, puritis (19), twitching, fever, abdominal pain, confusion, acne, vertigo, decreased or absent reflexes, hostility, variations in blood glucose level. Definitions from answers.com:
1) An excessive accumulation of serous fluid in tissue spaces or a body cavity.
2) nystagmus: A rapid, involuntary, oscillatory motion of the eyeball.
3) asthenia: Loss or lack of bodily strength; weakness; debility.
4) parathesia: A tingling sensation felt in a part of the body numbed from lack of circulation.
5) emotional lability: Open to change; adaptable: an emotionally labile person.
6) hyperkinesia: An abnormal increase in muscular activity.
7) dysarthria: Difficulty in articulating words, caused by impairment of the muscles used in speech.
8) arthralgia: Neuralgic pain in a joint or joints.
9) diplopia: A disorder characterized by double vision.
10) amblyopia: Dimness of vision, especially when occurring in one eye without apparent physical defect or disease. Also called lazy eye.
11) leucopenia: An abnormally low number of white blood cells in the circulating blood.
12) alopecia: Loss of hair; baldness.(!!!)
13) thrombocytopenia: An abnormal decrease in the number of platelets in circulatory blood.
14) purpura: A condition characterized by hemorrhages in the skin and mucous membranes that result in the appearance of purplish spots or patches.
15) ataxia: Loss of the ability to coordinate muscular movement.
16) rhinitis: Inflammation of the nasal mucous membranes.
17) pharyngitis: Sore throat; Any of various inflammations of the tonsils, pharynx, or larynx characterized by pain in swallowing.
18) myalgia: Muscular pain or tenderness, especially when diffuse and nonspecific.
19) puritis: Severe itching, often of undamaged skin.

[Laurie290]

I was on on neurontin for about 3 yrs or more & had a lot of these side effects! After switching to Dilaudid & MS Contin SR, I still continued to have some of these still today.Since my pump was installed & I am no longer recieving the drug thru bloodstream,kidneys etc,I still have the prolonged side effects after high drug dosages from the preceding 10 yrs! Whether these side effects ever recede is beyond me,they can sure reek hell w/ our lives,mental states,& ability to lead some kind of independant life.I miss my mind & memory the most! :(

[quadvet]

Bump for hoping others will share their experience discontinuing Neurontin, and if others experience the above symptoms.

[jms462001]

Because of constipation, I've never gotten to high enough dosages of any opiate (methadone, MSContin, or Oxycontin - tried 'em all) to relieve my pains. I plan to try the long-acting dilaudid when it comes out, along with shitloads of laxatives, if needed to reach an effective dose.


For those taking pain meds, get a GOOD colon cleanser from hi health or others. It is in capsule form Take as needed as directed. It works like magic! I have not had that problem since!

[rybread]

I've cut myself down to 300 mg twice a day and sometimes I forget to take my morning to us but I don't notice any difference. I was taking 3600 mg a day but it was giving me some severe memory problems so I cut down slowly. I notice in a couple of days if I haven't had it so I continued to take it. That's my experience, but I learned how to cope with my pain for the most part. It never really dips below 5 but I'm used to it so I try not to complain anymore.

[celery]

Hi David -
I'm getting into this conversation late but wanted to post my story since i found it helpful to read others'. I was searching online for people like me who developed neurological problems when taking Neurontin.

I'm a 31 year old female who injured my coccyx in 2008 and my tailbone is now sitting on a nerve which causes me pain. Back in April of 2009, I was given a compounded creme with Neurontin in it for the pain and after three weeks of use, I developed neuropathy (tingling and burning) in my hands/feet and tongue. None of my doctors believed it could be the neurontin causing this and i had a million tests to rule out various neurological disease. The neuropathy continued to progress even after i stopped using the medication. In September, a doctor convinced me to start taking neurontin in pill form because they didn't believe that Neurontin was the original trigger of my neuropathy. I was in enough pain that i agreed. I was taking 300mg twice a day. On the 5th day, i noticed that my joints were all killing me, including my jaw which is now extremely tight. I developed tmj, tinnitus, hyperacusis (hyper-senstive hearing), hyper sensitiviy to light, weakness in my facial muscles and breathing problems. None of these have gotten better even though i've been off Neurontin for over a month.

My Neurologist is completely baffled over why i developed these problems and basically said there was nothing else she could do to help me.

Aside from the tailbone injury, i was very healthy before taking Neurontin. Has anyone else had anything similar happen after taking this medication?

[TMAZ]

I quit taking it because of the following:

clouded thinking ability
weight gain
nausea

After awhile the side effects did go away except for the weight gain. I could look at food and gain weight.

[goldnucs]

I take 600mg, 4x/day......The most severe side effect is blurred vision and I think that over the past year my overall vision has become noticeably worse, although I don't know hw much is attributable to the neurontin.

[Lazlo]

I recently went cold turkey on the neurontin (from 4x600mg) just to see what would happen. I found that the pain wasn't any worse, just more frequent. That is, I spent more time at "peak pain" than I did before. I wanted to stay off it but I've started taking it again because even a small amount of relief helps. I haven't noticed the severe side-effects mentioned here though.

[NorthQuad]

I've quit taking it and have felt much better since. I felt hungover 24/7 while taking neurontin. I haven't taken any meds for a couple of years now. I feel less polluted.

[arndog]

Zero - I am glad you did well after stopping Neurontin cold turkey. I just want to get it out there that stopping cold turkey from a high dose of Neurontin, Lyrica, or other anti-seizure drugs is risky. It could precipitate seizures. What a bummer that would be! So better may have been to lower the dose gradually, if only to prevent potential seizures.

May I ask what dose did you return to to give you relief?

[Lazlo]

Zero - I am glad you did well after stopping Neurontin cold turkey. I just want to get it out there that stopping cold turkey from a high dose of Neurontin, Lyrica, or other anti-seizure drugs is risky. It could precipitate seizures. What a bummer that would be! So better may have been to lower the dose gradually, if only to prevent potential seizures.

May I ask what dose did you return to to give you relief?

I'd never heard that stopping neurontin could cause seizures, thanks for the note. I do know baclofen withdrawl can be dangerous.

Lately I've been taking 300mg morning, 600mg noon and 600mg night, so I'm just over half the daily dose I was at before. I'm still experiencing a lot of pain in the evening though.

I've been offered a Lyrica sample to try but I'm hesitant. I don't want to start the process of gradual increasing resistance to a new med, I want a pain management solution that will be stable long term.

[David Berg]

Has anyone else had anything similar happen after taking this medication?

I've only heard one other account over the years from someone online who attributed similar problems to Neurontin. Neurontin has been a godsend for many patients, but it doesn't work for everyone and it does have some potential pitfalls.

I highly recommend that anyone who uses Neurontin to read Pfizer's info. It's long and involved, but this is a serious med and I believe it's important to be an informed consumer.
http://pfizer.com/files/products/uspi_neurontin.pdf

[Lizbv]

I quit taking it several years ago because there was no genericavailable and I got off assistance and couldn't afford it. It was a good decision, and I don't remember too many side effects.

[mr_coffee]

I was on 1800mg of it and I stopped cold turkey which I don't recommend! My nerve pain actually transformed once I got off it. It went from insane pain in my arms anytime I touched or moved my hairs to itching. Now my arms itch all the time but its not painful.

When I was on nerutoin though if I missed a day of taking the pills my nerve pain went through the roof. My ass hurts all the time still though but the side effects made me feel like I was worthless. I was always tired and not having any energy to do anything.

My grandma takes 100mg of neurotin for a sleeping pill! and I was on 1800mg!

Ween yourself off it slowly. The pain will get worse, much worse but your body will adapt and you will get use to living at that level of pain and may even dull it.

[celery]

I've only heard one other account over the years from someone online who attributed similar problems to Neurontin. Neurontin has been a godsend for many patients, but it doesn't work for everyone and it does have some potential pitfalls.


Hi david - Can you direct me to that persons posts online? I'm really curious to see what their experience was.

I know now the potential problems with this drug, but feel like i was pushed by my doctors to take it. I refused at first, but 5 separate doctors told me that i should take it, citing a low risk drug profile. I know the drug helps people, but I should've gone with my instinct.