Neurologist

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.

Important: Posts and information in this section are based on personal experiences and recommendations; they should not be considered a substitute for the advice of a healthcare provider.
Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

No one has taken liquid Neurontin (gabapentin)? Looks like I'm going to be the first one.

I finally found a pharmacy (in the next county) that was able to acquire or "compound" it into a liquid. I'll start it tomorrow. The dosage is less than the capsules, and only take it twice a day instead of three. And, it has to be kept in the fridge, not good for travel but I can always use the capsules when traveling.

Here's hoping.

I'll post back again soon with the verdict.

ViewsAskew
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Post by ViewsAskew »

I know I've not tried it. I know that some pharmacies compound stuff, but that's the extent of what I know!

The fridge thing could be an issue if you travel. But, if you do not, it probably wouldn't be too much of a problem, though you might have to keep a schedule of when you must be at home.
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.

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

At this point, The meds are always in my backpack. Not the medicine cabinet. So, except for just cruising around town shopping or whatnot, they are always with me.

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Sad to say, the liquid form of gabapentin is no better than the capsules, so I'm sticking with the capsules.

badnights
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Post by badnights »

bummer

ViewsAskew
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Post by ViewsAskew »

Oh, that's too bad.
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.

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Hello. Been a while for me.

Saw my neurologist today. Will now be trying Lyrica, and stopping the gabapentin. I've read here that Lyrica seems to be the next drug when gabapentin is not or no longer effective. Be glad to be off it as it seems to have little effect anymore, and the side effects are becoming more of a burden than the little relief I get.

If this doesn't work, the next one might possibly be codiene or oxycontin (some kind of opiate).

He also thought I might try Xryam to help me sleep. Gave me an entire folder of pharmaceutical information, including a DVD video. Haven't watched it or read it yet. Anyone here have any first hand experience with it?

Side note about the liquid form of gabapentin I mentioned in earlier posts, I lost power due to a thunderstorm and it wasn't restored for about 20 hrs. Everything in my fridge was lost, including the gabapentin. After all the trouble of finding it and the greater cost than the capsules, I was upset to lose it even though it didn't help any more than the capsules.

ViewsAskew
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Post by ViewsAskew »

So sorry it's time for the occasional trial to find the next thing that works. I do hate those times.

Can't remember who.....someone tried Xyrem a few years ago. Can't remember the exact results but don't think it worked long term....don't quote me, though...
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 »

I've been taking Xyrem for about 6 months for narcolepsy. It certainly helps with sleep, it knocks me out cold for a couple hours. And while it's effective in the body it also gets rid of RLS. But the first couple months I had crazy RLS in the morning as it wore off, and others on some narcolepsy forums have had that side effect as well. So I still have to take my methadone for the RLS or it drives me crazy during the day.

Xyrem is only approved for treating narcolepsy, so if you are prescribed the drug it would be off label. And it's crazy expensive, so you'll want it covered by insurance. My last shipment had the price on the label at $2400. I pay a $40 copay. There was someone in the forum here who took it for RLS and you can use the search function to try and find related posts. My pain doctor said that he prescribes it to pain patients to help them sleep and that it's getting more and more popular. The company that sells it was recently trying to get approval to treat fibromyalgia, but it was denied. They have to fix some problems and resubmit the application.

It seems pretty drastic to me to take Xyrem for sleep problems related to RLS. Narcolepsy is an entirely different scenario - we get terrible quality sleep because we change sleep stages every few minutes because we're lacking the chemical in the brain that coordinates the sleep wake cycle. Most people can take Ambien or Lunesta and get better sleep. You might want to ask about those drugs first, if you haven't tried them already. Xyrem can have some pretty nasty side effects, like depression, anxiety, and worsened RLS.

Do keep us posted. I'd love to know if you try the Xyrem and how it works for you.
Susan

ritomko
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Joined: Thu Aug 26, 2010 5:12 pm

Post by ritomko »

Was the neurologist helpful? I am seeing a GP and wondering if i should be under the care of Neurologist.

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

ritomko wrote:Was the neurologist helpful? I am seeing a GP and wondering if i should be under the care of Neurologist.


Yes. Your experience may be different though. I'd research the Neuro and find out if they have any experience treating RLS and if they are willing and licensed to prescribe medications up to the opiate category before making the appointment. And, if you do, you will have to judge for yourself if it's beneficial to you.

If you read through this entire thread, you'll notice that my first neuro didn't work out, despite a promising start.

Polar Bear
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Location: N. Ireland

Post by Polar Bear »

I work with my GP using the Mayo Clinic Algorithm. At one time he referred me to a neurologist who knew next to nothing about RLS and his parting comment was that 'you do not appear to have MS or Parkinsons, 'yes, you have rls - just keep working with your GP as you are doing'.

The good thing that came out of it was that he approved codeine, which in turn the GP traded for tramadol. I think the GP may have been looking for this approval.

I reckon knowledge of treatment of rls is more important that the title of the doctor. Failing the knowledge, then a willingness to use the Mayo Algorithm.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

My neuro put me on codeine yesterday (Tylenol #3).

He wanted to give me percocet, but my previous experience with that drug (dental pain) was just an awful acid reflux. I only took one and threw the rest out.

First evening with codeine was pretty good. I was able to relax, wasn't drowsy, and felt more energetic. Will be tapering off the neurontin, which I'm tired of. It works well enough, but I'm always drowsy and lethargic.

Hope that energy level improves as I come off the neurontin

Polar Bear
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Location: N. Ireland

Post by Polar Bear »

Pretty good that your doctor is willing to go the opiod route. They seem to just about work on the WED/RLS for most folk.

Does Tylenol contain another drug as well as the codeine. (I am unaware of Tylenol here in the UK). If so it would be good to have the codeine on its own rather than take an unnecessary drug.

But one step at a time and I am very happy for you that this appears to be a good move.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Wayne
Posts: 179
Joined: Tue Feb 17, 2009 1:50 am
Location: Virginia (USA)

Post by Wayne »

Polar Bear wrote:Does Tylenol contain another drug as well as the codeine. (I am unaware of Tylenol here in the UK). If so it would be good to have the codeine on its own rather than take an unnecessary drug.


It has acetaminophen, just like the OTC version.

It still causes a bit of reflux, but nothing like the percocet would.

Interesting point: My neuro was even aware of the name change from RLS to WED, he mentioned it to me. He still referred to it as RLS when we were talking though.

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