Gabapentin Users
 

Hi guys....

How long did gabapentin take to work for you? What dosage did you start at? How quickly did u work your way up? At what dosage did you start to feel relief? How do you know how high to go? I feel like I will just want to keep going higher and higher until I don't feel the pain anymore...but I have a feeling that's not going to happen so how do I know when to stop?
What did/does it feel like? Does it make some pain completely go away or does it just make it die down? Does it help anybody with anxiety? I am hopefully starting this tomorrow and want to know what to expect.

thanks again...

Just started
 

I was told you need to work it up in your system.
My dosage plan is (mg, 3 times a day):
100/100/100
100/100/200
200/100/200
200/200/200
200/200/300
300/200/200 (where I am now)
300/200/300
300/300/300 (what my goal is- 900mg per day)

I felt a little relief right away. The deep stinging pain died down. The more I take it, the less pain. By this time, I still have pain, but not like before.

Side effects so far: drowsiness, blurred vision, confusion...but not much. I notice an increase of the side effects when I up the dose. But then it goes away I guess once my body gets used to the dose.

Yes it can help with anxiety and mood issues, but you may benefit from anti-anxiety meds as well. It may help you sleep even at beginning dosages. I would say I started to get relief from the burning and electrical zapping at 3x 300mg. daily. They moved it up to 3x600mg within a couple of months which is the most common dose. I am moving up to an extra 300 mg before bed, but this is after five years at the same dose.
It primarily works on burning pain when it works.

I didn't do well on gabapentin....or it's real one Neurotin...it added to my stress...but I have read that others here are doing well with it and others...:grouphug:
But that's us...you need to understand it might alone work for you and you need to take small steps....:hug:

Thanks! this is exactly what I needed to hear.

I take Gralise (time release Nuerotin) 1,200 mg once a day. I take it before I go to bed so I sleep through the foggy side effects. Before that I took the regular Gabepetin at one point 600mg 3 X a day but I was able to get that done to 400mg 3X a day.

My analagy on it is you really don't feel it work, but you feel it when you miss a dose. You don't feel immediate relief like taking something for a headache. It sort of builds up over time, probally weeks depending on your dosage. They start you low and build you up, being patient is hard I know.

The burning & tingling are still there but a duller sensation if that makes any sense.

The Dr's have had me try Cymbalta (not for me made me an angry person) and Lyrica (too much weight gain). What I like about the Gralise is when I'm having one of those days (flares) I can take a regular Gabepetin 300mg sometime during the day and it takes enough of the edge off that I don't need something stronger.

I hope you find something that provides you relief, we all know none of this is any fun.

[QUOTE=twitchwitch;1137022]I was told you need to work it up in your system.
My dosage plan is (mg, 3 times a day):
100/100/100
100/100/200
200/100/200
200/200/200
200/200/300
300/200/200 (where I am now)
300/200/300
300/300/300 (what my goal is- 900mg per day)

How long did you spend at each dosage? thanks!

My analagy on it is you really don't feel it work, but you feel it when you miss a dose. You don't feel immediate relief like taking something for a headache. It sort of builds up over time, probally weeks depending on your dosage. They start you low and build you up, being patient is hard I know.

The burning & tingling are still there but a duller sensation if that makes any sense.

Ugh, I think I live in fantasy land. I was really hoping the burning and stinging would go away with gabapentin.

Mike - you are able to sleep through the night? Was that always the case or did your pain wake you up and keep you awake before taking med?

Also, why did you switch to gralise from gabapentin? Also, you down dosed? how did you know you could do this? why did you try it? how long have you been on it?

One more thing, if you don't know it's doing anything but feel it if you miss a dose then that doesn't seem like it gives much relief?....

Side effects so far: drowsiness, blurred vision, confusion...but not much. I notice an increase of the side effects when I up the dose.

Blurred vision all the time? certain times? is this one of the effects that goes away?

Does the drowsiness make you sleep all night? I wake up after about 2 hours of sleep in major pain and then usually can't fall back asleep. Does the drowsiness stay around or does that disappear too?

Apparently you've started taking it...and increased the dose, in one day, since you said "I notice an increase in side-effects when I up the dose".

You have to give it time to build up (but it doesn't take long to notice subtle changes) and for side-effects to go away...and yes, those are the ones that usually go away after a while (everyone is different, so I can't put a time on how long they take to go away---could be 2 days, could be 2 weeks).

If the pain is better, you may not wake up like you have been...wait and see.

I hope it works! and that you are right, I might not wake up like I have been.

and now when I read my response to en bloc my reply is stuck up in his quote...oh dear, I apologize guys. Still getting used to the forum I guess. Sorry for the confusion en bloc

[QUOTE=Enna70;1137028]I didn't do well on gabapentin....or it's real one Neurotin...it added to my stress...but I have read that others here are doing well with it and others...:grouphug:

Hmmm...if gabapentin doesn't work, should I try Neurontin? Does anybody find that the brand works but the generic doesn't?

[QUOTE=canagirl;1137051]Sorry! I meant to say, per day. So upping the dose a little each day. So that's over 8 days. Then I'll stay at 900 per day (3 x 300) for awhile I guess. I hope it's enough.

No problem...just keep us posted on your progress.

Did you stop the nortriptyline? I think you will have better results if you take both.

I notice an increase of side effect soon after taking the increased dose, but so far, it's tolerable and decreases over the day a bit (the blurred vision and drowsiness). Still adjusting to it, again, tolerable....I've been able to do everything I normally do (but I'm not driving right now). But I have been sleeping better and hardly wake in the night. I hope you have relief from it!

Neurontin (gabapentin is generic) is one of the faster acting in that class in that you don't need a loading period. Hopefully you'll notice something in a matter of days. I took it for several months and found it helped quite a bit with shooting pain and brought the stinging down even though I only took 300 mg at bedtime. I quit taking it because I am one of those few people who gets depressed on it. Since you have daytime duties you might want to try the bedtime routine a couple of days just to see how you do or have them give you the 100mg caps so you can start low during the day and add on later. It should help with anxiety and mood swings. Neurontin works by down-regulating nerve signals, so the signals are not as strong and the system is more calm. It doesn't work by blocking pain receptors.

I hope you find relief soon :hug:

Did you stop the nortriptyline? I think you will have better results if you take both.[/QUOTE]

No, I didn't stop. I did decrease by 10mg to prep adding the gabapentin because after going through old posts and finding people that take both I didn't find anybody on 50mg of nortriptyline and gabapentin.

although, I just got a call from my dr receptionist saying he is sick today and won't be in tomorrow either and they rescheduled me for wed! ugh.... I know it's only one more day but it's been so hard to wait for Tuesday...now I have to wait to wed.:mad:

I know everyone is different and respond different to different drugs. My story is different than most, my nueropathy is a direct result of a critical illness. You can read about at the bottom of the post.

Taking the Gralise seems to help me sleep since its taken before bed and the side effects of Gabepetin or Nuerotin are drowsiness or tiredness.

I started at 100mg, then 300mg, then 400mg then 600mg during much of this I was still in physical therapy trying to get stronger from being sick. As I would complain to my Pain Dr, he would up the dose. As I got most of my strength back I was getting tired of the drowsy foggy feeling and was given the ok to scale back my dose to level where I could deal with the pain, 400mg 3X a day worked fine.

When Gralise came out my pain Dr thought I would be a good candidate for it so we started the dance with the insurance company to get it on my list of approved drugs. Its one of those that need special approval since its not a generic.

Once I get back to normal on Gralise I hope its the way it was before they had me try Lyrica. Where I really didn't have any ups or downs during the day since Gralise is a once a day time release drug verses taking a pill every 8 hours.

I still have bad days, flares as they call them, days that shoes, socks, blankets, water in the shower and even a cool breeze seem to hurt. In the 4+ years I've been dealing with this I've learned to savor the good days and more little things in life to be thankful for. The really bad days I've learned to give in and take a pain pill, sit down and not push it. I have an understanding wife that knows I'm just not sitting because I'm lazy, its because I really hurt.

I know I got lucky when my PCP referred me to a pain clinic, and I got a good doctor there. Once he understood I wasn't looking for narcotics and was in pain looking for a solution all was good.

Starting to take Nuerotin or Gabepetin isn't easy. You don't get immediate relief it slowly builds over time. If you take it 3X a day you might notice more pain at the 7 hour mark, sometimes you don't and its not until you feel the pain you realize its time for a pill because its been 10hrs. Then you take a pill and don't notice its working since its very gradual.

I hope you find a Dr to help you, one that will listen and help to give you something to help you sleep.

Sorry if this was long and some of it helps you.

did anybody try an antidepressant first (like nortriptyline) didn't get good enough relief but tried gabapentin and got good relief?

I finally have a diagnosis of CMT. I take 2700 mg of gabapentin each day and 90 mg of cymbalta. I start physical therapy this week. To soon to tell much of a difference. I had a better day today. This is the end of the road for me. Low impact yoga and stretching has been very helpful. My goal is to be able to drive and work again. Good Luck!!

Do you know the type of CMT that you have? What affects are you having? Be careful with physical therapy. Hopefully the person will know something about CMT. You cannot build up atrohied/dead muscles. The healthy muscles up to a point. Just curious. Thank you.

I have gabapentin and instructions on how to start! I hope this works. The stinging, burning, needle, heavy, paralyzed feeling is intense. I have started to get muscle spasms and cramping along with the twitching...:( This sucks.

Still mentally in a whirlwind. Still don't think I will be able to cope even if Gabapentin works. My family is in shreds. My parents are fighting all the time, my dad has turned to drinking to cope. My husband is depressed, sad, feels helpless, hopeless, angry etc, trying to learn how to adjust to this new crappy life for us.

hope for healing is gone. hope for improvement is gone. hope to stop progressing is rapidly fading. I feel like my body desperately needs a massage. but I can't stand for anything to touch me let around rub me.

Something is being missed! I know it. Yet, I can`t doctors to do anymore testing (other than my biopsy later this month).

I feel like u are the only people that understand. yet, I feel like I have gotten what I can from everybody here. There doesn't seem to be much else. When I come on here I keep hoping to hear stories of recovery and when I don't hear them, I get even worse. Trying to "hang on" like I've been told, but don't see much point.

Question. My doc said to stay with the nortriptyline and add gabapentin (gave me dosage and schedule). however, I take the nortriptyline right when I climb into bed. Can I take gabapentin at the same time? Or should I space them apart like gabapentin at 8pm and nortriptyline at 9pm?

Seems like it would be okay either way but you can call pharmacy if you want to be sure....

Canagirl, I really dont know if any problems taking gabapentin at the same time as your other medication but I dont take the nortriptyline. The most important thing I was told was ref spacing out the gabapentin at regular intervals. I was taking it all over the place so when I quickly got up to 2700mg (which I did quickly due to severity of pain) I was taking 300mg capsules randomly all over the place. No one told me until I saw the GP a few weeks later that I had to take 900mg (3 capsules) first thing, then the next 900mg (3 capsules) at lunchtime, then the next 900mg (3 capsules) around bed time (I do 9pm). As long as there is no more than 12 hours between my night time dose and morning dose I feel it works best for me.

That might not answer your question directly but I just cant believe how little info I was given about spacing out doses. One day I took no meds ever, a week later Im taking 9 capsules of gabapentin and 2 naproxen a day with the occasional tramadol.

A little medicine box may help. I always forgot I had just taken my gabapentin and sometimes took the dose again because I had forgotten and was a bit spaced out from the side effects. That wore off by the way.

Canagirl: You're right, there aren't a lot of stories about people making full recoveries. (I suppose the few that do fully recover don't need this forum anymore, they just go back to their previous life.)

But every time I read some posts here, I see people who are managing their disease. Some are getting better, a little at a time. Some are holding steady, but finding better ways to cope with whatever their personal reality is. Some are going downhill, but are making the best of every day they have.

But they all have lives. Maybe not the same lives they had before - but they have lives. And, those lives have value to them.

As long as your doctors are still running tests, and trying various medications and therapies - there is still hope for improvement. Seek pain relief in the short term. Once you get the pain under some measure of control you can return to searching for things that will slow down, stop, or even reverse the disease process. :)

I ramped my gabapentin consumption up to 2400 mg over time. My current schedule is this:

9am - 1 tab (600 mg) gabapentin
3pm - 1.5 tab (900 mg) gabapentin
9pm - 1.5 tab (900 mg) gabapentin and 1 cap (25 mg) nortriptyline

I do take a bunch of supplements including magnesium, which I take at noon so it doesn't interfere with gabapentin absorption.

I also watch the temperature of my shower, because it can set off burning all over my body.

Does anybody have the feeling that ur body is being compressed and something heavy is sitting on top of u?

Typically, Gabapentin is taken three times a day (equal amounts)...so morning, mid day and evening. Personally, I would take the last dose around 8 pm so it will be working good for bed time.

How much did he prescribe? Did he also give you enough to increase a little after a few days?

he wanted me to start out on 100mg morning and lunch and 300mg at bedtime. after a few days increase by 100, keep going like that. He only gave me a 14 day supply but wanted to see me again this week and next week. I guess he will talk to me about how it's going.

Have you noticed any improvement?

Ugh, with all the pain I'm in u would think I would have started GABapentin. However, my husband convinced me that I didn't give nortriptyline a long enough enough try at the dosage the neuro recommended (40, although my pcp said 50 which I did get up to but only stayed on it for one day before dropping to 40). So I went back up to 40 on nortriptiline. I am feeling better pain releif but my twitching and jerking is really ramped up. I'm scared that the nortriptyline will cause this issue to worsen permanently or worse develop into a serious movement disorder. So I want to get off The nortriptiline and stay off for awhile to see if I return My previous levels of twitching and jerking. But I soooo scared of the pain returning cus it's dampened right now. Then I will start gabapentin. I don't know if I can handle that though. Can't go back to the full blown pain, ahh I don't know what to do. I can't figure all this out. I'm scared of staying on and scared to get off.

I honestly don't understand why you would consider putting yourself through more pain/discomfort then you have to. The doctor said ok to take both and frankly, that's what you should do. Most here take the combo.

Your twitching/jerking was here long before the nortriptyline and it's probably just progressing. It's also something the Gabapentin may help with.

You're likely in for a long haul with your plan. Give this some thought.

Obviously, everyone is different, but I can tell you that Gabapentin has reduced my twitching and cramping issues by about 90%. The twitching and cramping were my first symptoms, and I got to a point that I was having a really hard time driving (which I obviously need to do for work). The doctor prescribed Gabapentin - I had used it previously, and I didn't necessarily like the side effects, but felt I could tolerate them if it kept me functional and employed.

Of course, I'm trying to find other ways of controlling things through lifestyle, diet, and supplements. Hopefully I'll be able to get to a point where I can reduce or eliminate the Gabapentin.

As I mentioned in a previous post, you are in a critical phase. You need to find a way to control your pain so you can return to some level of sanity. Once you have your pain under control, you can work on trying to resolve the underlying condition (and ultimately getting off the medications). The Gabapentin + Nortriptyline combo seems to work well for many people. And, I think some people find that smaller doses of multiple medications have lower side effects than large doses of a single medication.

I do have to warn you though - Gabapentin can be tough to withdraw from. You need to taper off really slowly. But then, many if not most of the medications we use for for pain have similar issues.

Gabapentin is not metabolized by the liver, and is excreted whole by the kidney. This reduces many metabolic side effects when other drugs are used with it. Doctors know this and often prescribe it in combinations. (many drugs will interfere with each other --increasing or decreasing effectiveness or chance for overdosing----but gabapentin is safer in this regard.)

It will however, increase sedative effects, when the other drug is also sedating.

My twitching reduced 90% also on the gabapentin-nortriptyline combo. I was on that combo for almost year before I tried stopping the nortriptyline. I went 2 months without the nortriptyline and it was a terrible mistake. Burning all over the place and I couldn't function well.

This is more of an art than a science. Take your medication for several months and find some relief. Then try tweaking or reducing medication levels. I used to say that I will never take medication of any kind.....well this condition sure changed my mind pretty quick.


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[QUOTE=madisongrrl;1139127]My twitching reduced 90% also on the gabapentin-nortriptyline combo.

question...when you guys say "my twitching reduced 90%" did you mean you have 90% less twitches or is the intensity of each twitch reduced by 90%

right now the nortriptyline isn't reducing my twitches AT ALL (I still have 100+ twitches per minute everywhere in body all at the same time. However, the overall intensity of my twitches (how strong they are) has gone down.
I was hoping the nortriptyline would reduce the number I get, but it hasn't. I am wondering if gabapentin will actually reduce the number I get.