Neurontin users…

    • Anonymous
      May 20, 2006 at 11:15 pm

      I was just wondering how many of you take neurontin on a daily basis? I have been on it for over 4 years now (now take the generic gabapentin) & I don’t know what I would do without it. But I am beginning to wonder if that is what is causing my extreme fatigue issues. I was originally on 3600 mg daily, weaned myself down to 2400 mg after I got out of the hospital after 3 months, then have been down to 1800 mg for about 3 years now. My neuro says I should be on the 3600 mg dose based on my nerve damage, but I get by. But I do know that drowsiness is one of the side effects, or is this just at the beginning?

      I have come to the point where my remaining physical residuals really don’t bother me all that much, but how does one explain this kind of fatigue to others? My husband will be retiring soon, is in perfect health, & wants to do a lot of traveling. He has waited a long time for this & I so don’t want to disappoint him, but I am so tired so much of the time. Also, has anyone tried any other drugs for nerve pain that don’t seem to cause this side effect? Or am I blaiming too much on the neurontin? Any other meds that one can take to combat this fatigue? Any help on this issue would be appreciated…
      Pam

    • Anonymous
      May 20, 2006 at 11:33 pm

      Hi Pam,
      I am taking neurotin on a daily basis for the last 2+ years. I was down to
      600mg a day and was not coping well. My neuro increased until I was on
      3600 mg a day. I too experience fatigue and very low stamina. I was ill about 6 weeks ago with a flu and was unable to keep anything down for about 3 day. I went completly off all my meds at that time. I decided then to try and cut back my dosage. Some days I can function on 1200 mg and other days I NEED 1800mg. How long this will last I do not know. I find I need to pace myself and plan ahead for any long days or special functions.
      The fatigue is so hard to explain to those that have never experienced it before. I usally feel like I have “hit the wall”. Sitting down does not revive me. I must lay flat to recover. I get a lot of pain in my mid-section. Sort of like a “tight belt” feeling. When that passes I can function again for a while.
      Latley I have been having a lot of leg cramps. I am so tired of feeling like this. I feel guily that there must be something I can do to function again.
      Nothing is like it is suppose to be. I feel I have no purpose, no where to go from here.
      Sorry to be so depressing.
      Please take care and be well.
      Bonnie

    • Anonymous
      May 21, 2006 at 12:41 am

      Bonnie,
      I can so identify, I call it hitting the “brick wall.” No one who does not experience it can begin to identify. I get so tired I can’t even think straight or even talk. When family members call after 7:00 PM I won’t even talk, as my voice is too weak.
      The past few weeks have been really bad, I don’t know why. I have CIDP but I know I am not relapsing, as I can still walk, have the use of my hands, etc. but this fatigue really gets to you after awhile. I feel like I am always disappointing family members when I have to say I am just too tired to do something. I could not even go to the grocery store with my husband today, as I just was not up to it. I just wondered if it was the neurontin or the damaged nerves trying so hard to send signals to the muscles to work?
      Pam

    • Anonymous
      May 21, 2006 at 3:05 am

      I am a gabapentin ‘intaker’ for the nerve pain from my CIDP related PDN. See my signature below and the one that norb uses.
      I am on 2400mg pd. That’s normally OK and without fatigue. That comes when I am affected by ‘mini-lows’ of atmospheric pressure. For an explanation of that see part of my web site and my other site [URL=”http://www.nervepainandweather.co.uk”%5Dhttp://www.nervepainandweather.co.uk%5B/URL%5D The effects are very demanding. It is only a slight consolation that I have a peripheral neuropathy friend locally and also a nearby CIDP sufferer who also go through the same torture. All 3 of us have more sensory and axonal damage than motor nerve damage.
      No level of gabapentin/neurontin stems the storm tide of pain, unless we were to be knocked out completely. It is quite exhausting.:eek:

    • Anonymous
      May 21, 2006 at 7:08 am

      Pam,

      I am up to 3600mg/day and some days get by on 2400mg, mainly because it is so expensive and I’m betwen a rock and hard place with assistance on it. My uncle had shingles and they gave it to him for the severe nerve pain he was having but he can’t take it. Said he couldn’t function on it. I had to laugh because I can’t function without it.

      I too am extremely fatigued most of the time. I was dx this time last year and know that the warm weather makes my condition worse for me. I was out of town this week and forgot to take my meds before leaving the room for breakfast. I could barely walk or stay awake. Once I got back and took them, I was able to “hike” to a scenic waterfall (on cane but hey I made it to the river edge). I also managed to get across a swinging bridge with my 2 1/2 y/o daughter so she could see the “Big Sycamore” on the other side.

      So go figure, I know I stay fatigued and not really thought about it being the neurotin, since I know I can’t function without it, but this week proved I am VERY tired without it. Guess I’ll keep on taking it and napping with my daughter, at least once a day.;)

      Best of luck all,
      Karen

    • Anonymous
      May 21, 2006 at 10:20 am

      pam,

      although i do not think the neurontin is the cause of your fatigue, a test you could run is to rest, rest, & rest some more in a prone postion for a month while continuing to take the full amount of neurontin even if you do not feel like you need it. feeling better? then you were doing too much. take care. be well.

      [url]http://www.gbs-cidp.org/forums/showthread.php?t=40&highlight=rebuild[/url]

      [url]http://www.gbs-cidp.org/forums/showthread.php?t=43&highlight=rebuild[/url]

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 21, 2006 at 11:19 am

      I have been as high as 3600/day but have been on 1800/day for awhile now. That seems to be a happy medium for me between drowsiness and pain.

      Jerimy

    • Anonymous
      May 21, 2006 at 11:55 am

      Some people here don’t take Neurontin or any other meds because they actually don’t have any pain and they are just as fatiqued as all of you. My opinion is that this is a residual of GBS/CIDP. Your nerves are not working properly, and the signal to your muscles doesn’t work very well because of that, so your muscles have to strain to work harder to function. You can become very fatiqued in a short period of time.

      Fatique plays a huge role in GBS/CIDP even when you are years down the road from your onset of the illness.

      šŸ™‚

    • Anonymous
      May 21, 2006 at 12:17 pm

      I have GBS and am only 6 months from the onset but I totally agree with Brandy. I am not taking any medications. I have a muscle ache here and there once in a while. But the one thing that I learned is you can not fight the fatigue. I come home and napped all day long and slept all night long. Then I started to feel better and could move around more. I made the mistake of not taking a long nap in the morning and in the afternoon and I suffered severe exhaustion. I found this board and realized I needed those naps and not to feel guilty.

      I totally agree with Brandy and had to prove it to myself. I still over do it once in a while but know now to listed to my body and I know the feeling of needing to go sit down or when I need to lay down on the couch or when I need to go to bed.

      [I]Quote from Brandy:
      “My opinion is that this is a residual of GBS/CIDP. Your nerves are not working properly, and the signal to your muscles doesn’t work very well because of that, so your muscles have to strain to work harder to function. You can become very fatiqued in a short period of time.

      Fatique plays a huge role in GBS/CIDP even when you are years down the road from your onset of the illness.”[/I]

    • Anonymous
      May 21, 2006 at 3:45 pm

      Hi,

      I took Neurontin for several years and I believe that it really helped with the pain. The problem I had was that I needed to increase the dosage constantly. After a while, I started to get goofy or goofier than I already seemed to be. My concentration became altered and I focused too intently on small tasks. Once I was hooked on something (e.g., TV or solitaire), I couldn’t seem to break my concentration. I was at 2400mg and told to take more, however, I decided to wean myself off of it gradually. It was very expensive but I got a grant from my clinic so it was free.

      Today, I still get very tired–especially if I get upset or emotional, which is good for a very long nap. Also, the pain continues and I try to live with it the best I can. Aspirin is my drug of choice along with a hot shower in the morning and a hot tub soak at night. Otherwise, I can hardly sleep and often wake with my leg muscles burning. It is very difficult to explain to people, especially those who are close to you, that you cannot keep up with them. Most seem to think that if you exercise enough, you will just get better and be back to you old self in no time. When I get very tired, I have an awful gait and it looks as if I am plodding along or that I feel downtrodden. This is often misinterpreted as my being upset or mad about something rather than the fact that I am just having trouble walking. That is when you come to the forum and talk about how you feel. I may not be able to climb mountains anymore, but I can sit in a drift boat and fish or sit in car and travel. I just have to work within my limitation and convince others that they have to do the same. šŸ˜€ [FONT=”Comic Sans MS”][/FONT]

    • Anonymous
      May 21, 2006 at 7:58 pm

      I was on Neurotin some years ago and missed 2 doses-the pain ripped me up. Did this rebound effect happen to any of you? I went off of it. My new family doctor gave me samples for Lyrica but that old experience stays in my mind.I have severe nerve pain/spasms, on major pain meds and the specialist can’t go higher.No one else at the IVIG clinic has pain like me.
      Is the generic just as good?? Lyrica is very expensive.

      Have found few people understand my “invisible illness” as I try to look nice when out and then I stumble along.I prefer to sit and chat than do activities as I can’t predict how long I’ll last.I always seem to be surprised that I’ve run out of energy-the thought of fatigue is rarely on my mind… then it hits so suddenly I’m stunned. šŸ˜® Laying flat helps the best and I use lots of pillows between legs, under arms and in the center of my back when on my side.

      I just reread the posts and I don’t answer my phone either as I’m too tired to talk. I did get head phones to use because of arm weakness. They are so great and I tuck the phone in my pocket if I decide to roam the house.

      Glad the FORUM is back””” šŸ˜€

    • Anonymous
      May 21, 2006 at 8:14 pm

      I was up in the 5000+ mg a day for a long while. I have basically taken myself down to the 800 to 1200 level for the past several months. I had tried the Lycra for 2 months, but when the free samples ran out my Ins did not have it on their list yet so I went back to the neurontin.

      I’m a high school band director. I’m ok as long as it’s no more than a 6 hour day. At the end of 6 hours I had better be near a bed to lay down for at least 2 hours or the wall FALLS ON ME.

      I’m lucky that I teach in a private school that is very understanding. My problem is that sometimes “I “forget and push myself too much with a couple of 8-10 hour days and it takes me WEEKS to recover.

      The week of my spring concert I had a long day Monday with after school practice till 5 and the next day the concert was at 7:30 pm. I had done regular 9:30 till 3:30 classes both days and drained the batteries. Wednesday was a little slow but Thursday they had to call to see if I was alive for I didn’t wake for either alarm clock. Basically it took me 5 days in bed just to be able to make it into school and I still have not recovered 100%.

      I had forgotten just how serious the fatigue could be. During football season, with the long nights at games, I do not go into school until afternoon and even with that I usually stay in bed Saturday and Sunday. I had forgotten all this…….heck it was just an after school practice and a concert………. While adjustments up in neurontin can cause me fatigue and sleepyness for a few days, it’s the wall thats gets us all.

      Everyone has their own limit. Mine is 6 hours. Some people I know with GBS can do 8 hours, some only 4. It;s you clock and no one else can set “your” time for you.

      No matter what, stay POSITIVE.

      As I always say:

      I can feed myself and go to the restroom on my own, everything else is icing on the cake.

    • Anonymous
      May 21, 2006 at 8:18 pm

      Hi Gang,
      I think the fatigue is simply a part of the disease. I walk aroud , go places and do things. I look good on the outside, but feel rotten on the inside ! K C came for a few days visit, and I did extra cooking, which I enjoy, but totally wiped myself out. I am my worst enemy, because I don’t want to miss anything so I keep pushing. I’ve been at this for 3 years now, you’d think I’d learn.
      Like someone else’s comment, I too have to lie down flat to recouperate.I am on 1200 Mg gabipentrin daily, for 3 years. But now feel worse, and must take some Tylenol to help. it works very well for me.
      Thank y’all for being there, it helps so much .
      Mary Ann

    • Anonymous
      May 22, 2006 at 6:43 am

      I take 400-500mg when I need to but you guys scare me with how much you take. I’d be a zombie taking that much. Most times I only take it to sleep since Ambien alone won’t do it for me. I left the house for the first time in 2 months on Thursday of last week and actually drove myself around town and I have been a wreck ever since. Every joint in my legs and arms was in pain. I took oxycodone 50mg and 500mg of neurontin and I was still in pain. I’m scared to take more than 500mg and my script expired on May 1st so I need to stretch this out.

    • Anonymous
      May 22, 2006 at 7:12 am

      Solar my Dr had me on 1800mg a day of Neurontin. 600mg 3 times a day it made me very tired. My only pain that I think is CIDP related is from my nerve biopsy I had about a year ago. Still hurts. It makes me very tired. My Dr just recently gave me Lyrica I am allowed 75mg x2 in AM and PM gradually worked my way up to that level. But I still get tired from it. I know I should be taking it regularly it should help with the healing. Maybe I will take 75mg 4 times a day spaced out in between. I may ask her next time I see her to give me a prescription for 100mg 3 times a day. Thank god my drug plan covers it; it only costs me $16.00 instead of $177.00 for 90 pills.

      Sue

    • Anonymous
      May 22, 2006 at 8:34 am

      limekat,
      do i understand you correctly that after missing 2 doses of neurontin & getting pain, you then stopped taking neurontin altogether? if so, you should have immediatley started taking it again. i have taken neurontin & its generic, my body can not tell the difference.

      solar,
      you might want to consider amitriptiline instead of ambien. besides being a great sleeping pill it can help w pain.

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

    • Anonymous
      May 22, 2006 at 10:45 am

      I have been dxed about 18 months. I take neurontin. My script is 1800 mgs a day (600 mgs 3 x a day) but for the last 10 months or so I have been feeling beeter so my neuro lets me take it as I need it. Usually half a pill in the morning and one at night to let me sleep. My neuro believes some of my fatigue is attributable to the neurontin but I cannot go without it. The pain in my arms becomes unbearable.

      But you also asked if any of us take any of the the anti-fatigue medicines that are on the market. I take 200 mgs of Provigil a day. It is enough to help me through an 8-10 hour work day. Others on the board have tried it and not had the success that I have had. Provigil is like all the other meds, you might have to see if it works for you. As the sole wage earner in my house I am glad it works for me.

      Truly the best anti fatigue med is rest. I take days off when I need to and I lay down for the first 1/2 hour when I get home every night. I also allow myself to sleep until I wake up every morning.

      As for vacations etc. My family took a disney world vacation this past fall. We built in two days of rest for me. Days where we stayed at the resort and hung by the pool so I could recharge. When we were in the park and I got tired, I sat down and let my husband charge forward to the next ride. You gotta take care of yourself or you push yourself into a relapse.

      Jess

    • Anonymous
      May 22, 2006 at 10:50 am

      Hi,

      As I understand it, neurontin takes 3 weeks of somekind of daily dosage, to be fully effective. Then it’s the degree of relief where you adjust up or down on your dosage. Also, you wean off this drug, not cold turkey. Just popping one or two a day every once in awhile, is equivilent to 2 Bayer asprin. If the correct protocal is used, missing a day, or dosage in a day, should have minimul effect. Because it’s already built up in your system. This is what several doctors told me. Are your doctors saying something else? Was I using this drug all wrong? Some interesting use here, which could be the problem, and not the drug itself. I speak on the GBS side. The CIDPers are much more complicated. My fatigue is strickly nerve loss related and my body working 10 times harder now to compensate. A lot of people forget that in some, tendons and joints are effected too. Put those 3 together, and it gets fatigueing fast. Painful too. What I see on the CIDP side, that’s never mentioned, is that steroids used as a main protocal, causes muscle weakness as a side effect. That’s what I’ve read. Am I wrong in that? Add that to the mylin loss, pain, and the ups and downs a CIDPer has, and I would assume their fatigue is greater then a GBSers’. Maybe not greater, just comes on faster possably. Drops off to a greater degree. Whatever methods are used to control pain, is an ongoing work in progress. I’ve discovered over the years that what pain I so dearly had at one point, changed to a different kind of pain, to no pain, to skelatal joint pressure pain, and so on. I had pain and GBS. Was on neurontin in high dosage, but somewhere along the line, the nerves on fire part of pain had gone. Wasn’t until I weaned myself off of it to see just what and how much pain I really was in, that I discovered it. Probably still be on the stuff if I hadn’t tried. That opened up not so often drugs and protocal as choices. You just never know. I’d try something every two years to test the pain and discomfort levels I have. Time can change that stuff to, don’t forget.

    • Anonymous
      May 22, 2006 at 1:14 pm

      Hi, Pam.

      I’m a CIDPer. I was on gabapentin (Neurontin) for about six months and found the side effects were worse than the pain. I was dreadfully fatigued, found it hard to concentrate, was clumsier than normal. After I quit taking it, I improved in everything except the clumsiness.

      I should state, however, that I have problems with all sorts of medicine. Ibupropen and paracetamol do nothing for me, and prednisilone makes me sick. But I can take aspirin all day long with no problems, and it helps with much of the pain.

      At any rate, keep experimenting until you find what works.

      Deb
      on the other side of the Pond

    • Anonymous
      May 23, 2006 at 12:51 pm

      Greetings All,

      As Brandy stated, I am one of those without a whole lot of pain, but fatigue is my middle name. I did take neurontin years ago and felt that it contributed to acid reflux so I stopped it. I do take amitryptiline (?sp) at night which helps for sleep somewhat… but I have gained 30 lbs. on this, so I will be stopping this med soon and deal with the strange shooting pains with aspirin or something of the like.

      I do find plenty of rest (9-10 hours nightly) really, really helps – even at almost 10 years after onset.

      Stay well.

    • Anonymous
      May 23, 2006 at 8:34 pm

      Hi I am 6 years post GBS,

      I used Neurontin for about 8 months and found that I was gaining weight and I didn’t like taking so much medication. I slowly dropped my Neurontin. I was also taking Vicodine ES at the same time and I knew that wasn’t making me gain weight. I stopped most of the pain with the Vicodine so I didn’t go back on Neurontin.

      Boy I sure know what you mean by hitting the wall. Exhaustion is always there. It is so frustrating when I push myself too much, I pay for it for many days.

      I just started taking Cymbalta at 90 mg. At this level it is supposed to help with the pain. As I was told by my psychiatrist that it makes the pain not register so much. Something like that. I tried going down to 60 mg and I did have more pain and went back up on 90 mg. I have cut down the amount of vicodine that I use a bit. It has been 8 months now and I am still hoping for more help with the pain and less vicodine.

    • Anonymous
      May 24, 2006 at 11:02 am

      Pam H.

      Hi, I have been taking Neurontin 900mg 3xs per day since Jan. 2006. I feel it helps and would almost think about uping my dose just to see if I can get rid of more of the pain. I do not notice any side effects from that dose.

      Take care,
      Pam K.

    • Anonymous
      May 24, 2006 at 12:27 pm

      Hello, Pam:

      I took 2700 mg. daily Gabapentin for three months after dx with GBS. My neuro switched me to Lyrica when it became available. I have taken 600 mg. Lyrica daily for eight moths now. I prefer Lyrica because I feel less “brain fog.”

      Joe

    • Anonymous
      May 24, 2006 at 12:37 pm

      Judy,

      I’m curious about the new drug Cymbalta. How would you say your fatigue is with this? And it is supposed to work as an antidepressent, right?

      Thanks for the info.

    • Anonymous
      May 25, 2006 at 12:04 am

      Hi Chrissy,

      I have sent 3 large messages and have gotten error messages and then my post is deleted. Maybe it’s too long. Cymbalta is great. No weight gain, no side effects except constipation (so far), my panic is less, my anxiety is less, and I do have periods that I have some ambition to do larger projects. I still get exhausted but just have to take it easy at those times. Mainly my pain is less at 90 mg. I still have pain but I can handle it better. As I was told, Cymbalta helps you not to perseave (sp?) it as bad. If you have any questions, let me know. I have sent a note to the administrator to help me.

    • Anonymous
      May 25, 2006 at 6:01 am

      I have been on Neurontin since 2001, the last years 600mg 4 times a day. I also take 500mg Paracetamol and 30mg Codein in one tablet two times a day. This enhances the effect of the Neurontin. If I forget one dose, after about 8 to 10 hours the pain kreeps up on me and gets really terrible before I remember that I forgot- like just now, something unusual woke me this morning, the rutine was broken, and the pills slipped my mind.

      I have been feeling kind of strange all morning, but I’m used to ups and downs, so I really didn’t connect it to “untaken” medicines. Only when I started writing this, and my poor two index fingers turned out to be much more unruly than they have been for quite some time now, did I feel the familiar, but terrible stinging and soreness in my feet, legs and hands that tell me for sure I have forgotten my medication. Now the pain will increase for a couple of hours before the effect of the medication just taken wkill kick in.

      I guess Nevrontin litterally has been and is my lifesaver, I think it would have been impossible to live with a cronic pain as excruciating as the one I experience 10 hours after forgetting the last dose. The only thing that makes me hang in there is the fact that I know it will pass in due course, and that it will not have time to evolve into maximum pain. I know what that is like from pre Nevrontin-days.

      As you can see from my signature, I don’t have CIDP, but the symptoms are very similar, though the cause is somewhat different.

    • Anonymous
      May 25, 2006 at 6:02 am

      Counting my blessings once again…very little pain in the 8 years since onset and no need for painkillers.

      Fatigue is another story and seems to be a constant for 99% of us. Is there anybody who is NOT affected by chronic fatigue?

      Regards,
      Marge

    • Anonymous
      May 25, 2006 at 3:28 pm

      hi
      I take gabipentin daily from what I have heard from jerimy is that he still gets drowsy alot and so do I and I think that it is a on going side affect.but I was on DATS(disability bus) and a woman told me about 4AP a nerve drug that she takes look it up it may be your answer to your dilema.

    • Anonymous
      May 25, 2006 at 4:16 pm

      Judy – Thanks for the input on Cymbalta. If you want you can email me your long post to [email]cvelte@cox.net[/email]. I am very interested in getting off of several drugs and hoping this one will take their place.

    • Anonymous
      May 28, 2006 at 12:13 am

      Marge,

      At the risk of annoying a post-menopausal Italian-American woman from NY/NJ on steroids, I am blessed to suffer only very mildly from fatigue. I fall asleep easily if I am not busy with something (on the train mostly) and find that I must sleep in on Saturdays. Otherwise, I start my day at 5:15 am and go to about 10:30 pm without too much problem.

      However, my CIDP seems to be milder than most of the posters here, so perhaps my fatigue issues should also be milder.

      Mark