Hi,
I can only share my own Neurontin experience with you. It was pretty bad. I felt a lot of nausea and stomach upset. It didn’t seem to help me at all. My doctor told me that many people loose side effects with time and I should hang in there. Well, my problems with it never got better and I could never get to the dosage that really would have been optimal. I finally gave up on it and quit taking it and all the side effects went away.

I would like to mention Cymbalta to you. It has really helped me! I have been able to cut my pain meds in half. I have had no side effects from it. I am really surprised by how much it has helped.

Good luck. I hope you find meds that work for you.

Sandila 🙂

Hi there

That is the whole challenge around medications. Each individual has to find what works for them. It took me a number of years to find a combination that works for my at the moment.

Personally, I have been taking Neurontin for a number of years for pain — 2700mg/day. I haven’t experienced any real side effects, aside from the normal start-up ones, e.g. sleepiness, etc. It has helped quite abit, in concert with a number of other things, e.g. Tramadol, IVIg and methotrexate. My CIDP is primarily sensory, and extremely painful.

My suggestion is to think about what problems you are trying to solve and ask lots of questions. The other thing is to only try one thing at a time, and give it a chance. Making alot of changes means that you can’t really identify what, if anything is making a difference.

I hope that you are able to find something that works for you.

Cheers
Debs

[I]I would suggest that the side effects of Neurontin/gabapentin are no worse, and probably much less, than the side effects of the other meds you’re taking. [/I]

[I]I had the sleepy/woozy feeling when starting gabapentin. Had to go back to the 100 mg. dose for awhile and work my way up. Bit higher dose and for me there comes occasional diarrhea and when that happens, an Imodium will take care of that problem.

Gabapentin has definitely reduced the pinpricks and electrical jolts and exercise-burning-thighs.

As for my general well-being, there’s a study going on right now at the Oregon Health Sciences University in which they’re studying an over-the-counter med that has been used successfully in Europe for many years.

I use it. I was told about it by another forum member. So I’m “ahead of the game”, aren’t I?

Give Neurontin/gabapentin a chance. [/I]

[QUOTE=Rocky36][I]I would suggest that the side effects of Neurontin/gabapentin are no worse, and probably much less, than the side effects of the other meds you’re taking. [/I]

[I]I had the sleepy/woozy feeling when starting gabapentin. Had to go back to the 100 mg. dose for awhile and work my way up. Bit higher dose and for me there comes occasional diarrhea and when that happens, an Imodium will take care of that problem.

Gabapentin has definitely reduced the pinpricks and electrical jolts and exercise-burning-thighs.

As for my general well-being, there’s a study going on right now at the Oregon Health Sciences University in which they’re studying an over-the-counter med that has been used successfully in Europe for many years.

I use it. I was told about it by another forum member. So I’m “ahead of the game”, aren’t I?

Give Neurontin/gabapentin a chance. [/I][/QUOTE]

I agree…I take 1800 mg a day. Likeso many others on here I HATE pills so I thought to myself that I will go off gabapentin cause I don’t NEED it. Well that was a huge mistake by the second night I was crawling to the pill bottle I was in so much pain.

I say if you are not sure give it a trial run of 6 months. See how you feel after the six months and then make a decision.

You need to know it does take some getting used to. You need to start off slow and add pills cause they make you very tired!

Good Luck,
Rhonda from Canada

I can tell you my experience with it and it was awful! It caused all the quoted side effect like dizzyness and sleepyness, but in my case, it also cause memory loss. Severe memory loss! I mean HOURS! I knew I had to stop taking it one day when I was at work and I had forgotten dropping my kids off at daycare! I was sitting at my computer and the last memory I had of the day was getting in the car with the kids. 3 hours later, I was sittting at my desk and was struck with panic. I thought they had been in the car all that time. Thank God I had taken them, I just didn’t remember! I knew then that the relief of pain was nopt worth the anxiety or loss of my mind. I stopped cold turkey which is not reccommended, but I didn’t care! Eventually, I had to stop working due to the pain and side effects of all the other medications. I also tried Cymbalta and have to say that it was AMAZING controling the pain, but I was sleeping 16 hours a day. It made me So tired. I just started IVIG a week ago and am starting to feel a little better now. I also take Vicodine daily and Marinol (medicinal marijuana) when needed and I have no responsibilities like the kids are asleep or at school. Marinol is given to cancer patients for chemo side effects and also works wonders for pain. It has to be used VERY CAREFULLY and know that even if it is in a pill form, it is very powerful and you cannot drive, work, or have any responsibilities at hand. It is legal in all states since it is a pill and considered a schedule 3 drug, meaning it is not as controlled as narcotics like vicodine. It is an option. I can’t take it often because I am useless after taking it for 8 hours, but it does help with the pain. I also can’t take steroids because even at a low dose, I turn into a very mean person.
I hope you find what works for you……. It is a very long, stressful, confusing, frustrating process.
Hang in there……..

I have taken neurontin for several years. gabapentin is the generic. it does tend to put on a few pounds, and make you drowsy. The purpose is for the neuropathic pain. That would be the shooting pains, the burning, tingling pains. It would not help any aches or throbbing types of pains. When you start to take it you will feel woozy. When you adjust your dosages you will get woozy. There IS a dosage that will control the neuropathic pain. Some people take quite a lot. Some people take not so much.

Pain and CIDP is a tricky thing. Different pills do different things. Remember to talk to your Doc to understand what the goals are with each medication. Your Doc should take the time to explain what he/she is prescribing and why you need it. You need to ask, ask, ask.

Here at the forum you will find that many people have had success with many different drugs. Many people have failed with the same drugs. It does not make the drug good or bad, not just a good match for the particular patient.

Lyrica is another drug in the same class as Neurontin. Right now there is not a generic for lyrica, but there is a generic for neurontin. I have had success with topomax, and it is available generically. Topomax has a bunch of side effects, but I seem to tolerate it OK.

You can read our suggestions, but you need to do your own homework, and most of all, trust your Doctor and your relationship with him/her.

Good luck
Dick S

I was diagnosed Sept. 2009 and have been taking 3,000 mgs of Gabapentin (the generic for Neurontin) a day since I got out of the hospital. The only side effect I notice is a very dry mouth,which many meds produce. It does help me reduce the pain – keep it at tolerable levels I guess I could say.
I was very glad that the Dr. in charge of PT Rehab I was in prescribed it.
As he explained it to me….the drugs I had been given in the hospital drugged my mind to not feel the pain, or much else. Neurontin eases the specific nerve pain I have. That made sense to me, and it has worked very well.

Best of luck in finding what works for you;-)

But, each of US reacts to each of these meds differently!
I had to change neurologists and worked hard to go thru additional testing to get off of neurontin. It worked, but not pain wise? I was simply a mental and physical zombie sleeping for 18 hours a day in 1-2 hour snippets. None of it good sleep and the first neuro just kept UPPING the doseages! Until I first started to have hallucinations and seek extra help via second opinions.
Needless to say neurontin and I did NOT get along? But other meds helped after a trial and error period of some other meds. The whole experience is NOT fun? But necessary if you are aware of any meds’ side effects.
Once I’d found a med that worked? I could sleep and actually DREAM! Dreaming when in neuro distress is essential to healing, I believe and I’m not a ‘dream analysis’ kind of person. IF you can’t get a good sleep? [which includes dreaming?] you can’t heal as well.
By the way? When I went off pain meds after 5 years, I found I didn’t hurt any more or less. Except when I’d overdone things… for that I’ve ultracet or derivatives…. They only cut about 10% of the pains? But that’s enough to get by. Learn and hope! Don’t be afraid to ask questions or for alternatives.

My son Ryan started taking neurotin a year ago and he started off at 100 mg 3 times a day(300) and worked his way up to 1200 mg three times a day (3600 mg a day) it really doesn’t take away the pain any longer.

so on top of the 3600 mg of neurotin he also takes 60 mg cymbalta a day, 100 mg tramadol every 4-6 hours, and 130 mg Propoxyphene HCL every 12 hours. thats just for pain and he is still in pain. mostly in his feet and legs. The worst time of day for him is bedtime and all night long.

Neurontin caused breathing problems for me, at very low doses, so they switched me to Lyrica. I’m still “ramping up” on it, but so far don’t seem to have too many side effects. The worst is the tiredness…like I needed more of that!:rolleyes:

I was on 500 mg of neurotin a day. I think it made me feel weaker than i realy was. It also made me very dizy and uncoordinated. I feel much better without it. I also heard of others becoming dependant on it. God Bless

Norb,

I take Gabapentin and yes in the beginning you are very tired.

Carol will need to rest a bit in the beginning but it does get better!

Without it I would be worse off, it is a wonder drug for me releaving most of my pain.

I was worried and tried to go off the pills…bad mistake couldn’t move and was crawling around the house trying to take more pills! Been on them ever since!

Rhonda

Hello Carol,

On drowsiness, you almost certainly will become less drowsy. If you were on very large doses, you might be more drowsy than normal all the time, but given your doses, it is not likely.

When is your pain the worst? I ask because neuropathic pain tends to be worse in the evening, so it is best to skew the doses towards then. I think DocDavid used to suggest taking the overall dose in three divided doses, at 2, 6, and 8 pm (I probably have that wrong, but the general idea is correct). If your pain is constant throughout the day, you [I]may[/I] have to deal with some drowsiness.

As far as interactions go, it is a reasonably safe drug. Calcium does interfere with it, so it is a good idea not to take calcium supplements within two hours of taking gabapentin. One should avoid alcohol, although a small drink may not have much effect.

As with all medicines, you should check with a doctor before you stop taking it. It is not like aspirin, where the effect is short-term. It takes a while to gain the benefit of the drug, so you should plan on taking it continuously. Most of us with CIDP find that the pain is pretty severe if we miss our doses.

One effect that I had when I was at my maximum dose was that I was slow mentally. I decided to trade some pain (i.e., a lower dose) for better mental function.

MarkEns

Hey Carol ~ glad you found something to give you relief! When I first started gabapentin (generic) I was sleepy too. It took a couple of weeks to adjust. I take 300 mg to go to bed and if it’s been a hard day I will add another 100 mg. During the day, I take 100 mg as needed. My pain is “usually” the worst at nite. Sometimes I add an extra-strength Tylenol. I found that it was worth being sleepy until I found what worked! And yes, my head was “foggy” but for me it seems to be a GBS residual. I just don’t go out on the days I don’t remember my name 😀

Hang in there 😉

Hi Carol! I started taking mine at bedtime so I could get used to it. The first pill did make me feel groggy and by taking it at bedtime the side effects of being groggy were not as bad. Then I took the second one in the late afternoon while I was home and that too made me groggy.
I am very hypersensitive to drugs. Side effects always are my problems when taking new drugs.
If you feel the dose is too strong at first you may want to pace yourself getting used to one first and then two and the third one waiting another month until you get used to the dose.
I now take 5 of them getting ready for 6.
It took me a good month getting used to them. And each week I noticed a difference. Less groggy! Now I take them and do okay! It’s a really good drug for pain and nerve pain. Tried all the other stuff and nothing worked. But that Neurontin does seem to help quite a bit. The only thing bad about the drug. Possible weight gain! It’s a good drug! Sure has helped me alot.
At least taking it before bedtime, that will help some with the groggy effects. Then add that second one a week later in the afternoon. Once you get used to the two then the third one won’t be as bad. Hope this helps Carol!
Happy Thanksgiving to you and Norb! Hugs
Linda H

Carol.
I take lyrica, which is similar to neurontin. Started taking 100mg 3xdaily and would sleep 4-5 hours in the day and evening. I’m sure some of the sleeping was due to GBS. I can now make it through the day without going to sleep and only taking lyrica 2xdaily . I know mine is a low dose but with sleeping so much in the beginning I ask Dr. not to increase it, as he did want to.
It does get better and hope this continues to help your pain.
Happy Thanksgiving to your family.

Hi Carol, you can find out all interactions, side effects and uses on any drug at medscape dot com, you might have to sign up to use it but its free and they don’t give out your info. Its the source many drs use. I use gabapentin(neurontin) also, yes in the beginning it can cause drowsiness, but your body will get use to it in a matter of days to weeks. I take 900 at bedtime and it will make me drowsy until I get worked up to the right level again-I stop taking it when I have less pain, then take it as I need to for increased pain. I am suppossed to be on 600 a.m., 600 pm and 900 bedtime. I don’t like taking meds because of too many reaction problems, but have not had reactions to gaba amazingly. Glad you found something to give you some relief. Take Care!

I just started it and I am almost a year and a half after onset. It seems when I overdo things, I start getting bad pain behind my left eye, the side of my knee, and I feel weak in the arms and get shooting pains. I am hoping it helps when I get these flares. I am also looking for a new neuro.

hi freezer & welcome,
there is no catch. enjoy your neurontin as many of us do here.

cara,
PA Dr. Weisman with the Neurological Associates of Pittsburgh. He has colleagues that specialize just in GBS. hospitals – Presbyterian, Mercy or UPMC.

I was quite impressed with Rodney Bell, M.D., head of the neurological intensive care unit (NICU) at Thomas Jefferson University Hospital in Philadelphia

Dr Tahmoush’s main office is in Philly. his Trenton,NJ phone # 609-599-5792

There are 3 good doctors down at U of Pa. Shawn Bird, Steven Scherer, and Mark Brown. also see U of Pa website

take care. be well.
gene gbs 8-99
in numbers there is strength

thank you gene for the referrals. U of P is good for me – about an hour and a half from philly. I am going to see if they are in my plan network.

Does anyone know of GBS specialists in the Minneapolis MN area? Appears many in PA. But it’s too far for a penniless person to travel from MN to PA.

MN Mayo in Rochester, Minn. with Dr. P.J. Dyck [the elder], MD ]gene’s note: i understand dyck’s son is also pretty good.] I was seen by Dr. Christopher J. Klein, a neurologist and Dr. Luis Porrata, a hemotologist.

University of Minnesota Dr. Kevin Brown [email]brown483@umn.edu[/email] also Dr. Gareth Parry, a super neuro.

Dr. Troy Payne Neurology Clinic of St. Cloud 2025 Stearns Way #105 St. Cloud, MN 56303
Phone: (320) 253-1822 Toll Free: (877) 253-1822
he was quick to recognize the symptoms and get me started on IVIG the day after he admitted me to the
hospital. Very thorough too as he ran tons of tests to be sure he wasn’t misdiagnosing me either.

*** NOT RECOMMENDED*** Dr. Eric Sorenson of the MN mayo. He was [ineffective] & a rather cruel doctor.

Twin Cities – Burnsville – I would recommend my Neurologist highly:
Dr Leland Scott Minneapolis Clinic of Neurology (952) 435-8516

Fairview (U of M) where I have been seeing Dr. Gareth Parry [gene adds – a top draw guy]

Leland J.C. Scott, MD, PH.D The Minneapolis Clinic Of Neurology, LTD. Oak Ridge East Professional Building
675 East Nicollet Boulevard, Suite 100 Burnsville, MN 55337 (952) 435-8516.

take care. be well.
gene gbs 8-99
in numbers there is strength

Jane, if you are able to get an appt. with Dr. Parry, he is on the board of this foundation and a wonderful guy.

Jerimy

Yup Freezer that’s same person. He spoke at the National Conference in Phoenix also.

[B][COLOR=”SeaGreen”]I feel I was very fortunate to have Dr. David Weisman, M.D. of Abington Neurological Assoc. out of Abington Hospital, in Abington, PA which is outside of Philadelphia. Dr. Albert Waxman, M.D. out of the same office actually diagnosed me and I found him to be great also.[/COLOR][/B]

I dont use any neurontin. I was offered it but I hate the way I feel already. I like feeling my body as much as possible. So I do with out it. It is usally the worst when I am still. But I think Im doing pretty good with out it.

I have been on lyrica since a year last May. It has been very helpful. However, I have a few possible side effects which could be due to lyrica so the dose is being cut back. As a result, I am having pain and spasms that had almost disappeared.

I am a senior living in the Montreal, Canada, area. The side effects may be due to aging. I have an appointment with the neurologist who has been following my progress altho my family MD has been prescribing the Lyrica.

Hi Margaretks, Welcome to the Family. I hope your side effects go away for you, and you can get your pain under control.

Hello Margaretks I am from Cornwall Ontario Canada. Ask any questions we will be glad to help you.

Sue

Gene and Jerimy: Thanks so much. I will take this info with me when I visit my daughter this weekend. So far, I’ve met 2 drs at the rehab hospital. Adequate, I’m sure, but not inspiring…and gave me nothing during our conversations to indicate any particular expertise or interest in a GBS patient.

Everyone: I’d like to share that my daughter is making progress. 🙂 And for about 5 weeks now, there has been no regression…bad days, but no regression. YEAH! She is beginning to eat real food, albeit soft or pureed, and has tube feeding for back up nutrition. She has begun breathing on her own for an hour or two, once or twice a day as tolerated. Has regained some hand strength; though not dexterity. And has some movement in her hips, thighs, and feet. As you may recall, she was dx 5-11-07, had 11 PE treatments, continued a downward trend until week of 6-14-07. She has an extremely aggressive case, sourced to the cytomegalovirus (sp)–those cases are cited as being tough all around.

Thanks to each of you for your support, encouragement, and prayers. Know that mine go out to you as well.

Jane, if I can ever be of help feel free to email me jerimyschilz at hotmail dot com . I am always happy to help however I can.

Jerimy

stacy,

is he doing more activity lately? if so, he prolly needs more rest. if not, suspect the neurontin. other pain meds for gbs are elavil, topamax, lamictal, trileptal, keppra, & cymbalta. i do not recommend lyrica cuz it has a slight chance of causing gbs. call your doc & discuss all w him. take care. be well.

gene gbs 8-99
in numbers there is strength

I was looking up information about neurontin for my 3 year old because she complains all the time with her feet hurting. the dococtor says its her nerve senserys coming back. But he does not seem to want to give her anything for it. ant the p.t. does not think we should take it either. So I was trying to find out why. I don’t know anything about the forgetfullness, but I read it could cause very bad mood swings in children.

stacy,
make him understand the doc is wrong. he must rest a whole lot more or his nerves will never heal. the docs can’t have it both ways. the ncv part of the emg say ok or not ok.

mom,
go to a doc who will Rx neurontin. pain causes stess which slows recvovery.

MICH U of M Neuro-Muscular clinic in Ann Arbor Michigan She, Dr. Feldman ordered an EMG & recommended immediate IVIG. We were told “you have come to the Center for GBS. We have been studying this disease for over 20 years and consistently explore the latest advancments in it’s treatment and recovery”. dr. parry is at u of m, world reknown. Mayo in 2002 (I have a severe case of CIDP), but actually had better luck at the U of MN than the mayo w Dr. Gareth Parry, & his is a specialist in GBS & CIDP. His nurse’s name is Denise, & her phone number is 612-626-9919. His phone number is 612-672-6300. You have to ask for his office & then you can leave a message on his answering machine.

Our Primary care Doctor is Dr. Clark Headrick and the Rehab Doctor is Dr. Dara Headrick, husband & wife both gbs experts.

Bon Secours Hospital located in Grosse Pointe (313) 343-1000, I went to their ER Nov. 21, 2002 w/numb hands & feet, after countless tests they called in a Neurologist: Dr. Policherla (313) 882-8600 he had experiance w/GBS before me & ran a lumbar puncture & nerve conduction test & determined it was in fact GBS

*NOT RECOMMENDED* So you see i am not alone in my opinion of him………………….I was beside myself.
His name is Dr. Richard A. Lewis, M.D. Professor and Associate Chairman Department of Neurology, Wayne State University School of Medicine.

The neurologist who treated me [quik confirm dx & quik ivig] was Dr. Darryl J. Varda, 2855 Michigan, NE, Grand Rapids MI 49506. Phone (616) 957-4090. Family Practice Doctor [quik dx] is Dr. John Hamersma, Allendale MI 49401. Phone (616)895-2000

take care. be well.
gene gbs 8-99
in numbers there is strength

Gene,

I was reading your reply to Stacy and couldn’t understand part of it.
[QUOTE=gene]stacy,

*NOT RECOMMENDED* So you see i am not alone in my opinion of him………………….I was beside myself.

Did I miss something? What is this referring to?

Suzanne

suzanne,

the below is a comment from a gbser. whatever preceded it i must have deleted to avoid identification of the person who wrote it. take care. be well.

*NOT RECOMMENDED* So you see i am not alone in my opinion of him………………….I was beside myself.
His name is Dr. Richard A. Lewis, M.D. Professor and Associate Chairman Department of Neurology, Wayne State University School of Medicine.

gene gbs 8-99
in numbers there is strength