[catra121]

I was previously taking Lyrica until I ran out of meds just after Thanksgiving. I have a new PM doc and he put me on Neurontin on Dec 3rd. Didn't get them until December 8th I think it was. Ever since then...I have slept and slept and slept. I cannot seem to keep my eyes open. I have still been going to work (on crutches because the pain in my ankle is still VERY bad and I can't put any weight on it)...but I get home and I sleep. I still wake up with my alarm and I still wake up from the pain...but I fall asleep right away which I have NEVER been able to do before. My entire body feels like one giant bruise and I have a VERY hard time getting up. And it's not just from the pain like normal...it's also because I am so frigging tired and all I want to do is sleep. Is this normal with this drug? It's especially frustrating because it's not helping with the pain. I think from what I have been reading that I am on a pretty small dose of it (100MG 3 times a day). But if I am sleeping this much on a small dose I am sort of scared what a bigger dose would do to me...would I ever be awake? I think I really need to talk to the doc about switching to something else because this is definitely not working.

[37IW]

Yes its normal but without the drug I'd be in serious pain!

[catra121]

If you don't mind my asking, what sort of dose do you take? I know everyone is different...but maybe if I could get the dose right it would actually help with the pain.

[lorigood243]

i take 300 4 times a day and then my dr increased it to 400 4 times a day. for it to be effective some people take 3000 mgrs a day. it makes me too sleepy. i stopped taking it and now my pain is way up. i didnt tell my doctor i stopped i just told him my pain was way up. now im going to have to go on it again...i was taking caffine pills to stay awake and they barely helped. now i dont want to have to go back on it but i may not have a choice
Lori

Originally Posted by 37IW

Yes its normal but without the drug I'd be in serious pain!

[sherimac]

Originally Posted by catra121

If you don't mind my asking, what sort of dose do you take? I know everyone is different...but maybe if I could get the dose right it would actually help with the pain.

I took it several years ago and I was on the same dose as you, only I couldn't do anything but sleep. I slept at least 16-18 hours a day. WHen I was awake I couldn't put sentences together, couldn't talk, couldn't put my thoughts in order, it was horrible, I came off it and haven't been back on, It did nothing for the pain and I decided I would rather be able to think and put sentences toegther and be awake then to sleep my life away in a drug induced trance.Part of my decision was the doctor's office reaction when I called them about the side effects and the the doctor actually said someting about being on a baby dose and I needed to grow up. Needless to say I didn't go back to see him either. I wish you much luck in trying to decide what to do.

[Josephina]

Neurontin, gabitrin, topomax - all seizure drugs will not 'cure' the RSD.
More than anything you need a good anti-inflammatory... like anaprox ( name brand). Klonopin ( name brand) is the best seizure control med you can take.
The reason is they are 'dirty' drugs ( with too many things in there to make you sick).
To break the pain cycle get a pan or some high plastic barrel to soak your foot/leg in warm sugar water. Just regular granluated sugar and keep making the water warm to tolerance.
Get the inflammation down and put down to break the cycle. Jos

Originally Posted by catra121

I was previously taking Lyrica until I ran out of meds just after Thanksgiving. I have a new PM doc and he put me on Neurontin on Dec 3rd. Didn't get them until December 8th I think it was. Ever since then...I have slept and slept and slept. I cannot seem to keep my eyes open. I have still been going to work (on crutches because the pain in my ankle is still VERY bad and I can't put any weight on it)...but I get home and I sleep. I still wake up with my alarm and I still wake up from the pain...but I fall asleep right away which I have NEVER been able to do before. My entire body feels like one giant bruise and I have a VERY hard time getting up. And it's not just from the pain like normal...it's also because I am so frigging tired and all I want to do is sleep. Is this normal with this drug? It's especially frustrating because it's not helping with the pain. I think from what I have been reading that I am on a pretty small dose of it (100MG 3 times a day). But if I am sleeping this much on a small dose I am sort of scared what a bigger dose would do to me...would I ever be awake? I think I really need to talk to the doc about switching to something else because this is definitely not working.

[KyMarie]

If Lyrica was working for you, I would have a discussion with your new doctor about going back on Lyrica. If it was working, I don't see any reason for taking you off it. I unfortunately developed rare but serious side effects on Lyrica so I'm not able to take it. When I first started Neurotonin, I was sleepy all the time. It took 3 weeks for the sleepiness to wear down to the point I could tolerate being increased, and he started me off on I believe 300mg twice a day.....it's only been 2 years but unfortunately, I really can't remember.

[SnowWhyte]

I was dx with rsd in left foot/leg about two weeks ago. Right away I started taking Topamax 25mg, once/day, tolerated it ok, hands got tingly pretty much right away, but not too bothersome though. I started Neurontin a few days later (after the EMG results came back normal, basically confirming rsd).

I'm still at the initial dose of Neurontin of 300 mg once/day, but it double every week for the first four weeks, and I'm SCARED! Because I also experienced extreme "drowsieness" (not a strong enough word, at all!). The first night I took it, I slept 18 hours straight, from that night, all through the next day, and into the next evening. It's not quite as bad now- in fact, it's helping me sleep at night, whereas I couldn't at all before, and I can wake up by 10 AM usually...but I'm worried about the fact that in a few days, I'll not only be doubling the dose, but I'll be taking the stuff in the morning- I really don't want to be a zombie all day. I'm in school, and have exams every class for the next 2-1/2 weeks till end of semester

That, plus the Topamax makes me forgetful and feel just plain stupid. I've maintained a 4.0 my entire college career, and I'm terrified that I'm going to lose it b/c of these drugs...but the pain is unbearable, the vicodin certainly won't do it alone, and I'm told that the first three mos are crucial in treatment, so if this is what I have to do, than so be it...I can't function in all this pain alone, and idk of anything else that will take the pain away without these side effects, that will also properly "treat" this early stage of RSD/CRPS.

So no, you are not alone- when they say Neurontin's side effect is drowsiness, they mean it! (even one of my class prof's knew about it, and understood immediately when I explained why I missed class that first day, of 18hrs sleep) but it has helped with some of my pain- and if it can put me into remission, the nasty side effects are most definitely worth it!

Best of luck to you! Hope all gets better, and goes well

p.s. my dr. has assured me that the side effects *will* get better/go away as body adjusts to the drug - we'll see- if not, there seem to be lots of alternatives out there as well.

[mjl1261]

My husband was on gabapentin about a year ago. They started him out at 300mg 3x/day and went up to 1200mg 3x/day. He never complained of any side effects (I specifically asked about drowsiness because I worried about him driving) but also said it didn't help his pain all that much, even at the higher dose.

Doctor finally let him wean off of it. Had him cut the dosage in half for 3 days, then half again for 3 more days, then quit altogether. He went from full-out to nothing in a week!

He didn't tell me until about a week ago, but he said that after he quit taking it altogether he felt like he'd suddenly be struck down with attention deficit disorder. Said he'd pick up the phone to make a call and couldn't remember the number or even who he was about to call. Said it lasted for months. He's ok now, but he thinks it was a withdrawal symptom and he thinks he should have been weaned off much more slowly.

FYI in case you're taking it and thinking about getting off...

[finz]

I'm on Neurontin 2400 mg/day. I take 600 mg in the am and 1800 mg at night, supposedly so the tiredness from the Neurontin will help me sleep. lol I normally toss and turn and am just exhausted ALL THE TIME.

I have been sleeping better, not waking as much, and actually feeling refreshed when I wake up since I have been earthing. Check out my thread on that. I still sleep at least 12 hours a day though.....