Neurontin?

Use this section to discuss your experiences with prescription drugs, iron injections, and other medical interventions that involve the introduction of a drug or medicine into the body. Discuss side effects, successes, failures, published research, information about drug trials, and information about new medications being developed.

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ViewsAskew
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Post by ViewsAskew »

That is frustrating, Mark.

Have you tried any "cocktails"? Like 300 mg Neurontin with some Ultram and whatever? It really does work to keep the doses down so that the side effects aren't so awful.

I can't imagine - at this time - taking a break from opioids. I feel so lucky to have something that works a good portion of the time after having so many failures for so long. I admire your strength.
Ann - Take what you need, leave the rest

Managing Your RLS

Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

SquirmingSusan
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Post by SquirmingSusan »

When I went in for my sleep study follow up, the nurse practitioner insisted that I try neurontin next, before I meet with the doctor again. I was so ticked at her because she didn't listen to a word I was saying about having severe augmentation symptoms and needing to get through those before even thinking about trying another drug. She finally relented and wrote me a script for hydrocodone, which has been working great.

Honestly, when I read about the side effects of neurontin, I am terrified! Weight gain, dizziness, nystagmus (have I mentioned I have lived with vertigo for ages, and really don't like it?), depression (am already a little depressed after quitting the Lexapro, switching to St. John's Wort and being totally stressed out), lack of coordination.

Sounds like being drunk! And I don't like that feeling.

On the other hand, it may have positive benefits for people suffering from chronic vertigo, as well as from depression, according to various treatment website, so I'm curious.

Has anyone here found the neurontin helpful enough that it's worth it?

I'm having such good results with just 1 - 5mg hydrocodone, that it makes me wonder what the benefit would be of trying the neurontin.

Susan :?

brandy
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Post by brandy »

I'm on a fairly high dose of Neurontin (1200 mg) and I haven't experienced any negative side effects (of which I am aware). I use it to control my PLMS, whcih was fairly bad and is now under complete control. I use it in conjunction with Ultram for my RLS. Neither works alone, but they work very well together for me. Good luck to you both!
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

FidgetBoy
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Post by FidgetBoy »

Mark- the headache/ear ringing thing is what I experienced with Lyrica but for some reason NOT with neurontin. Drug side-effects are weird! You may have better luck with Lyrica? The problem is how expensive it is... so if you can get samples, that would be better. I think I posted somewhere on here how to "convert" neurontin to lyrica.

Susan- I have a vestibular deficiency as well -- and my experience with Neurontin hasn't been bad. Yes- I was extremely tired for the first week, and I DID feel drunk for a short while.... but the reduced leg kicking was worth all of that. I use neurontin in addition to my narcotic (like brandy is doing) and I find the combination works much better then either drug alone. So I think the "neurontin vs. narcotic vs. both" question really comes down to your symptoms and what works. The problem is whether your MD is going to see it that way. Most doctors would prefer you try neurontin first and THEN move to narcotics if you fail. And then there are the doctors who won't prescribe narcotics at all..... :roll:
Josh

D4
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Post by D4 »

A 100mg dose of Neurontin knocked me out for the night like a brick. That was good, but I couldn't wake up in the morning even though I took the Neurontin about 7:30pm and went to bed around 10:30. My husband was pretty annoyed with me because he had to force me to wake up every morning for work. He didn't have to wake up for a couple more hours so that was the pits for him. During the day and evening, I just couldn't think clearly and was forgetting things, misplacing things. etc.

I've tried a couple more medicines since then but nothing works well without horrible side affects.

Sojourner
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Post by Sojourner »

After talking with doc today, I'm going to try the 600 mg neurontin with a vicodin or ultram to see how that goes. Perhaps wish I had started this with 300 mg. but maybe it wouldn't have made a difference anyway.

Susan, for me, the neurontin appears to make a good impact on my PLM. I really would like to see it work and feel it is worth the effort to try to find the right combination(s) which minimize the side effects and make the risk/reward come out in my favor. Besides, like many here, options keep shrinking. Only time will tell.
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SquirmingSusan
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Post by SquirmingSusan »

FidgetBoy wrote:Susan- I have a vestibular deficiency as well -- and my experience with Neurontin hasn't been bad. Yes- I was extremely tired for the first week, and I DID feel drunk for a short while.... but the reduced leg kicking was worth all of that. I use neurontin in addition to my narcotic (like brandy is doing) and I find the combination works much better then either drug alone. So I think the "neurontin vs. narcotic vs. both" question really comes down to your symptoms and what works. The problem is whether your MD is going to see it that way. Most doctors would prefer you try neurontin first and THEN move to narcotics if you fail. And then there are the doctors who won't prescribe narcotics at all..... :roll:


Thanks Josh, we're going to have to discuss the local doctors sometime. 8) If it helps with my vertigo thingee as well as the PLMs, then it's probably worth feeling a bit "drunk" for a while. Inquiring minds want to know, so I fearfully too about half a 300 mg capsule (dumped half in the trash) about 7pm. So far so good. Sleepy, legs relaxed, and bit giggly.

I found this website which really made me laugh. :lol: Be forewarned that the people responsible for this site are in no way medical people.

http://www.crazymeds.org/neurontin.html

Neurontin seems to cure everything if you can tolerate it. And actually, the side effect profile isn't bad. Weight gain only happens in 1-2% more people than those on placebo. I have spent 6 months going to a diet doctor and have lost a mere 13 pounds, and if I gain an ounce on the stuff, I'll be ticked.

There some incidence of water retention, but I'm wondering if the weight gain in RLS people is due to not exercising in our sleep. I wonder how many calories we burn climbing those mountains and running those marathons all night long.

Susan

SquirmingSusan
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Post by SquirmingSusan »

D4 wrote:A 100mg dose of Neurontin knocked me out for the night like a brick. That was good, but I couldn't wake up in the morning even though I took the Neurontin about 7:30pm and went to bed around 10:30. My husband was pretty annoyed with me because he had to force me to wake up every morning for work. He didn't have to wake up for a couple more hours so that was the pits for him. During the day and evening, I just couldn't think clearly and was forgetting things, misplacing things. etc.

I've tried a couple more medicines since then but nothing works well without horrible side affects.


Ya know, I wonder if those of us who have terrible experiences with the DAs are generally more sensitive to all meds? Of course, those of us who are hanging out in this forum are those troublesome patients who can't tolerate anything. :(

Susan

SquirmingSusan
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Post by SquirmingSusan »

Mark wrote:After talking with doc today, I'm going to try the 600 mg neurontin with a vicodin or ultram to see how that goes. Perhaps wish I had started this with 300 mg. but maybe it wouldn't have made a difference anyway.

Susan, for me, the neurontin appears to make a good impact on my PLM. I really would like to see it work and feel it is worth the effort to try to find the right combination(s) which minimize the side effects and make the risk/reward come out in my favor. Besides, like many here, options keep shrinking. Only time will tell.


I hope it works well for you Mark, and you get some rest. :|

As for options shrinking, I'm optimistic. Or at least in denial. It's amazing how quickly new treatments are popping up for everything. A year ago, just before Thanksgiving, my husband was diagnosed with AML leukemia. At the time of his diagnosis, the doctors gave him 25% odds of living to the next Thanksgiving. Four months later, at the end of his treatment, his odds had improved to 50%. Treatment options are advancing that quickly, and I don't think that's happening just in cancer treatment.

On the other hand, when you can't sleep, relief just can't come soon enough. :roll:

Susan

Sojourner
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Post by Sojourner »

Susan, glad to hear the good news about you husband. Hopefully, every four months the odds will continue to get better.
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ctravel12
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neurontin

Post by ctravel12 »

Hey Susan wonderful news about your husband and hope that it continues.

God does work in mysterious ways. That is so wonderful. Keep us posted on how he is doing and also let us know how you and your family are doing too.

This is such a wonderful support group especially how we all pull for one another. I would not have it any other way.
Charlene
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brandy
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Post by brandy »

Susan - I am so pleased. You, your husband and your family will continue to be in my prayers. Mark - please keep us updated on this new regimen. Good luck!
At times our own light goes out and is rekindled by a spark from another person. Each of us has cause to think with deep gratitude of those who have lighted the flame within us. Albert Schweitzer

sugbrendas
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Post by sugbrendas »

During my last crisis they tried Neurotin and it didn't do a thing for me.
This was in addition to my other meds.
My daughter takes it and it seems to work for her.
Finally able to sleep on average 9 hours a night!
Brenda

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Post by D4 »

Susan, I agree with you. I've always been sensitive to medicines and everything else (lots of allergies - inhaled and topical). I'm going crazy. I've been on the Vicadin almost a month and I'm ready to try the next medicine. I'm not getting good rest so I'm exhausted again most of the time. A lack of sleep can drive you crazy! The only good thing with the Vicodin is I can think clearly (unlike the last two meds), but if it doesn't help me sleep then I guess it's not that great. I'm so frustrated.

SquirmingSusan
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Post by SquirmingSusan »

D4 - Are you taking something specifically to help you sleep? Ambien, Lunesta, Sonata, even melatonin... Vicodin doesn't make me the least bit sleepy, in fact has no effect on me other than to take away the pain and the other sensations. (Some people get euphoria from that?!) I usually take a Lunesta or two to knock me out. Fortunately those work for me.

The Neurontin seems to help me sleep more soundly, but doesn't knock me out either. Although the first night I was pretty high. :lol: I went from totally frustrated, very PMSy, and feeling like I would crack in half from desperation, to relaxed and very, very giggly. I was thinking that, now here's a drug that should be a controlled substance. This stuff makes me feel high. It's like the ultimate "chill pill" for me. Mellows me out and makes me a little happy. But those side effects don't seem to be lasting, sigh. But it's only day 3 on that stuff. I'm not waking up with PLMs, but I'm not waking up easily.

For me, the Vicodin, with some Lunesta to help me sleep, is the optimal combination. But my freak doctors aren't content with what works, so I figure the Neurontin is worth a try. :?

Keep on plugging, D4. The Vicodin isn't supposed to help you sleep. See if you can get some kind of sleeping pill to add to the mix. I know it's scary playing with meds, but hopefully you can find a mix that works.

Susan

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