Need info on gabapentin...

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susieandirenes
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Need info on gabapentin...

Post by susieandirenes »

Doc wants to add gabapentin to the Vicadin I'm taking. Looked thru the posts trying to find something, but there is very little. I did read something about Gabitril.....is that similar?

Have been on Vicadin for almost a year, 1 before bed & 1 about 4 hours later. It doesn't help like it used to.

Showed my doctor the Mayo Clinic Algorythm about 'refractory rls'. He said to try it and see if I can 'tolerate' it. When I asked what that meant he said it makes some people feel like they are 'drunk'.

And, the panic/anxiety thing is getting better, but not gone by a long shot....at least found an excellent therapist and psych. People here are what got me through a HUGE part of that. THANK YOU !

Neco
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Post by Neco »

Gabapentin, is the generic drug name for Neurontin. It acts on GABA receptors. Primarily I believe it is used to help with neuropathic pain (neuropathy) related to nerve damage.

The drunk feeling I guess you could say you would have motor control issues, memory problems, and be "foggy".. kind of like you were drunk, without the alcohol feeling to go with it..

Other people it just makes extremely tired the next day as a side effect, and can also cause memory problems (short term only I think). Some people it doesn't bother, and some can just tolerate it.

Another more effective drug in the same class is called Lyrica.. Like Requip and Mirapex, Neurontin and Lyrica may help some people better depending on which one they take, some may get no side effects, and some may get all or a few. It's a trial and error case mostly. But drowsiness can be a big problem for most people that have complained about it.

Lyrica is much more expensive than Neurontin as far as I am aware.. Lyrica has no generic, and even generic gabapentin was too expensive for me to try at any significant dose.. Sometimes I felt like the Lyrica may have helped once I got used to it and some of the drowsiness went away, but I could not afford to take it in sufficient quantities or for a sufficient length of time to properly evaluate it.. I only had free samples, and a free sample prescription of the lowest dose.

For the short time I used them both, I felt like Lyrica showed the most potential, and the Neurontin I came to view as totally ineffective. I thinik I had to take 400mg+ to begin to see any relief (but not much in the long run) from Lyrica at all.. I probably would have ended up in the 600mg range if not higher if it did turn out to work and provide adequite relief for a sustained period of time.

I'm sorry to hear your Vicodin is not as effective as it used to be... It is not uncommon to need to increase your dosage a little bit as time goes on.. Figures I have seen ranged from between 5mg - 40mg a day in longterm patients taking Vicodin..

It is a simple matter of adjusting your medication until you level off at the proper dose that provides relief while not increasing it too high in one period.. I would hope your doctor remains open to adjusting your medication... I myself just had an increase in my methadone after 7 months, to an additional 10 (5mg) pills.

Hopefully I won't need another increase for a long time.. hopefully a year or more..(or never preferably!) Our bodies do adjust to medication and sometimes we do need to increase our dosage... The trick is not to confuse tolerance with addiction.. A lot of patients and doctors a like can easily do this.

ViewsAskew
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Post by ViewsAskew »

Susie, way to go! So glad you are getting that anxiety under control. That is great to hear.

Zach gave a great summary. I'd like to add that Gabitril is an anti-seizure medication. It has been used for RLS some, but not with great results. That said, it does help some people.

There are many meds that can be tried...many in the same class. So, if the gabapentin doesn't work, always know that there are others that can be tried. It can get a bit trying to keep doing it, but when it works, it's like magic.
Ann - Take what you need, leave the rest

Managing Your RLS

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SquirmingSusan
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Post by SquirmingSusan »

Hi Susie. I'm glad you're getting that anxiety thing under control. That's a hard thing to live with. And it sounds like your RLS doctor is willing to work with you. That's a huge thing.

A lot of us around here take Neurontin/Gabapentin/"Morontin" :o That last name is just a reference to what it does to our brains. I find it to be quite helpful as far as getting deep sleep, but it doesn't really help with the RLS. It does seem to tame the kicking a bit for me, as well. The one thing about Neurontin is that it has a short half life, so if it has bad side effects for you at least it wears off fairly quickly. It makes me dizzy and off balance, so I find it best to take it before going to sleep. It can also pop me right out of a frustrated tizzy and make me all giggly.

For some people, Lyrica works better, but not all. As with all medications, what works for some doesn't work for others.

With the Vicodin, it sounds like you've either developed a bit of a tolerance or your RLS has gotten worse. Either way it seems like it would be appropriate for the doctor to raise the dose a bit, especially since it has been working well for you.

If you'd like to read more about Neurontin, here's a link to a long thread about it here in the message board:

http://bb.rls.org/viewtopic.php?t=2002
Susan

Sojourner
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Post by Sojourner »

S, Sorry for the late response. I have been on Neurontin (currently 1800 mg daily) for about 18 months. It has been quite helpful in mitigating my RLS but quite good for my PLMD. About 4 years ago I had a miserable response to 300 mg of Neurontin and quit. But, out of desperation and lack of options I gave it another try. I have been at the 1800 mg for about 6 months now. I go into a trough every now and then but overall it has been generaly effective. It does not make me the least bit sleepy and I wish it did. Insomnia is a major prob for me even when the rls/plmd is ok. As I have mentioned several times recently, I have discovered a strong link between my insomnia and Ultram (which I have discontinued) and my Vicodin (which I need but sleep much better without when I can manage for a few days). The neurontin also has some anti-anxiety benefits.

Best wishes,

M.
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cmoore1958
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Post by cmoore1958 »

Hi Susie,

I'm glad your anxiety is getting under control. I myself do not have this particular symptom to go along with my rls and can't imagine what you go through.

I am one of those that Neurontin didn't work for. I also have fibromyalgia with my rls and my neurologist put me on Lyrica. I now take 600 mg at night and it seems to help the rls along with the fibro. I also take Requip to control my legs at night.

The Lyrica has all but eliminated my PLMD and that is a God send. That's not to say I don't have the occasion tornado look to my bed when I get up some mornings. :)

One of the side effects of Lyrica is weight gain. I had recently lost 30 lbs. and gained much of it back on Lyrica. It's not that I ate more or anything, it just happened. At the same time I find I look like I'm pregnant because the weight gain all went to my abdomen. Although this is a side effect that I do not like, the choice to continue on the Lyrica is totally due to the relieve I am finally getting.

This said, you will unfortunately have to find what works for you through trial and error. I wish you the best in this quest. Please keep us posted.

Cyndi
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My motto: It's MY pitty-party and I'll vent if I want to.

Neco
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Post by Neco »

Mark,

Most narcotics are known to have issues with causing insomnia, if you didn't know. I know I have had some pretty difficult nights here and there with Vicodin and Methadone in particular. Ultram wasn't as bad but it was still there.

Usually in those cases its best to just at least try some Melatonin, and even if your used to falling asleep with the TV on, or in mild light, try going into a dark, cool, quiet room.

ViewsAskew
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Post by ViewsAskew »

It so weird how we each have such different physiologies. All opioids either do nothing or put me to sleep (never energy). And melatonin keeps me awake and disturbs my sleep.

That's what's so frustrating about it, too. I remember reading that melatonin would help ( a long time ago) with regular sleep. I had one of the weirdest nights of my life. Of course, a few years later I'd forgotten that I tried it and, in a fit of sleeplessness, bought it again. Well, I won't ever do that again! I sure wish it did work...
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 »

The weird thing about melatonin for me, and most people I know who've tried it, is that when it kicks in, say half an hour after taking it, we get about 10-15 minutes of sleepiness, and if we miss that window of opportunity for going to sleep the sleepiness doesn't come back.
Susan

Sojourner
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Post by Sojourner »

Strange about the opiods and insomnia. Something I had read but never quite put together in my case....until it sort of hit me over the head. Duh! Awful to choose between rls-plmd or sleepless nights(s). Guess that's what makes the world go round. My best to all.

M.
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maxietobias
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Post by maxietobias »

My doctor put me on Gabapentin and the nurse practioner from the neurologist's office took me off saying it caused edema and weight gain.It was working perfectly---but I do have lymphedema ( a mild case). And I'm going to Weight Watchers. Has anyone experienced edema or weight gain while on Gabapentin ? She put me on Clonazepam0.5 mg 2 at bedtime. But I have a severe case --even in my arms and trunk all day. So now what am I to do?

Itis 3:30 AM nd the Clonazepam is not working!! Help!

Ruth

psychick
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Post by psychick »

I've been on gabapentin since January 08 - only 300mg @ bedtime - no edema and I've lost weight - but I'm extremely active/athletic also (4-6 hours of intense aerobic activity per week). And side effects differ from person to person. If you're not convinced by your nurse practitioner's opinion, you can always go get a second medical opinion.

The gabapentin hasn't been as effective for me as you indicated it was for you, but if I take any more than 300mg, I'm way too drowsy (and for me daytime drowsiness is the primary reason for getting my rls treated) plus the short-term memory loss and recall issues are bad enough at 300mg, I hate to think what they'd be like for me at a higher dose.

ViewsAskew
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Post by ViewsAskew »

This is a great illustration of how drugs both work differently from person to person, but how they work is different, too.

Like Psychick, gabapentin doesn't do enough at a low dose and at a higher dose, I'
m a blithering idiot. Since I've already forgotten half of what I've ever learned, I can't afford that....

And per the clonazapam, it's effective in a relatively small amount of people who take it...it has a reputation of being "the" RLS drug because they used it for 20 years when they hadn't found DAs yet or experimented with the antiseizure drugs.

I'd immediately - this morning - (too late, I got up after noon :? ) call the office and ask for a replacement. You can't live with the RLS driving you crazy to all hours of the morning! She has to either find something else that will work, or put you back on what does work and add something to help with the other issues, if possible. Ove
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 »

Ruth, I guess the question is, were YOU having edema and weight gain from the gabapentin, and was the gabapentin working for YOU. Yes, edema and weight gain are possible side effects of gabapentin, but if it worked for you and you weren't having those side effects then stay with it.

If the gabapentin worked but was causing you problems you may want to give Lyrica a try. It works similarly but may not have the same side effects. It knocked me out cold for about a week, but some people have great success with it.

There are lots of medications that can be useful for treating RLS. Keep on pressing onward and you'll find something!
Susan

maxietobias
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Post by maxietobias »

Thanks for all the info! I'll call tomorrow and see what she recommends. If she is less than helpful, I'll call my family doc. He is pretty up to date on RLS or at least he is eager to learn. I'll look into Lyrica. Thanks again for caring.

Ruth

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