Effectiveness of Gabapentin/Neurontin Over Time

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.
yawny
Posts: 186
Joined: Sun Nov 08, 2015 4:20 pm

Effectiveness of Gabapentin/Neurontin Over Time

Postby yawny » Wed Dec 28, 2016 12:36 am

I was reviewing treatment options at Dr. Buchfuhrer's website (http://www.rlshelp.org/rlsrx.htm#Anti-seizure) and under Neurontin/Gabapentin noticed the statement "The effectiveness of this medication often diminishes after 1-2 years." That surprised me. Does anyone have any feedback on this?

ViewsAskew
Moderator
Posts: 14865
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby ViewsAskew » Wed Dec 28, 2016 5:51 pm

If you put in "gabapentin losing effectiveness" you will find hundreds of posts on many forums from people saying just that. What I couldn't find - at least quickly - was research to back that up. Given that it's on almost every forum, however, my guess is that it the studies weren't long enough to identify it.
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.

Stainless
Posts: 81
Joined: Tue Dec 01, 2015 9:30 pm

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby Stainless » Fri Jan 06, 2017 12:08 pm

I used Gabapentin to get off Clonazepam. At first it worked very well as I dropped from 3 to 1 mg. using 300 - 600 mg. Gabapentin. Getting off that last mg. was brutal and once finally off the Gabapentin was useless. I might as well have been taking aspirin. After nine months on DAs that just turned my RLS world upside down, I'm back on Clonazepam. I need 2 mg. to get relief but the same doctor who had prescribed 3 mg says they will no longer prescribe that. I was struggling on 2 mg. and added 300 mg. Gabapentin and it helped a lot. Maybe I can reduce the Clonazepam further but I am not ready for that. The problem is identifying how much of it is the effectiveness is wearing off and how much is the RLS getting worse. Right now I'm doing about as well as I have ever done with my RLS and don't see much coming down the pike that will solve my RLS. At 60 it is a little disconcerting that at 70 or 80 all the factors acting together will make my RLS unbearable as it was on my attempt with DAs.

badnights
Moderator
Posts: 4558
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby badnights » Thu Jan 26, 2017 4:39 pm

stainless
Nothing in the future is inevitable. Nothing is set in stone - especially not how our WED/RLS will be. You haven't tried opioids, have you? A whole other world to explore, and they're much more effective, as a rule, than the anti-epileptics and the DAs (counting the DAs tendency to cause augmentation). Maybe it's time to educate yourself (and your wife!) on opioid meds?
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Stainless
Posts: 81
Joined: Tue Dec 01, 2015 9:30 pm

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby Stainless » Thu Jan 26, 2017 7:10 pm

badnights
I don't think my doctor, my wife or I are misinformed when you see the news coverage of the over use of or commercials for medicines to deal with the side effects of opium. I definitely want that to be the last resort and I understand many people are already there.
It would be great if we all had RLS specialists but they are few and far between. I am treated like a criminal when I refill Clonazepam that requires elaborate paper script every 30 days. My doctor's reply when I crashed when quitting Clonazepam to try DAs was "now you know what a drug addict feels like". Medicine is far from perfect but if I had had the support of a real RLS doctor (the all claim to be, just do a search) and reasonable access to opiates I would have tried it, but that is not my reality. I am back to normal my everyday hour or two of bad RLS and that is pretty good in my book.

badnights
Moderator
Posts: 4558
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby badnights » Fri Jan 27, 2017 2:07 am

If you're ever ready, they'll be out there.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

yawny
Posts: 186
Joined: Sun Nov 08, 2015 4:20 pm

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby yawny » Sat Jan 28, 2017 1:11 am

Stainless, thank you for your helpful feedback...you also inadvertently helped someone else, my mother. She has been on Clonazepam for about 13 years for a sleep movement disorder and trying to get off of it (it's no longer working) with the help of the Ashton Manual (http://www.benzo.org.uk/manual/) but at the end of the taper she ended up in the hospital several times. The doctors put her back on 5mg to stabilize her and I haven't been hopeful that we'll be able to get her off that last 5mg. After reading your post and researching the use of Gabapentin for tapering off benzos, it appears it has worked for many people.

Stainless
Posts: 81
Joined: Tue Dec 01, 2015 9:30 pm

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby Stainless » Sun Jan 29, 2017 7:19 pm

Good luck with your Mom yawny. Go Slow! I inadvertently tried to get my mother in her 80s to try Clonazepam because she has severe restless legs also and it works well for me. Her doctor quickly gave her a script for twice the dose I was on for some or no reason. At the time I really had no idea how benzos get so deeply entwined with you brain even if it feels benign. I guess I am glad she was stubborn and never took them.

I later quit because of a study linking it to an increased chance of Alzheimer's but on DAs my quality of life declined so bad I had a doctor and movement specialist recommend going back on it. Using Gabapentin I was lulled into a false sense that quitting was easy, quit at 1 mg and had the worst week of my life.

BTW I always just considered sleep movement disorder just part of my RLS. My girlfriends and wife would agree.

I plan to use Gabapentin to keep my Clonazepam dose to a minimum, maybe even reduce where I'm at. Rick

Polar Bear
Moderator
Posts: 6861
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby Polar Bear » Mon Jan 30, 2017 4:35 pm

I take 5mg Clonazepam nightly as a sleep aid. Not sure just how much use it still is, or ever really was.

However, today I picked up my Clonazepam prescription from the GP, went to the pharmacist, and was advised that Clonazepam is at present unavailable from the supplier. There is no indication when it will become available.

Back home, I ring the GP receptionist (aka 'the rottweiller'). Repeat what Pharmacist has advised regarding non availability and that I require an alternative, bearing in mind also that it would not be a good idea to come off 5mg Clonazepam Cold Turkey !! And I only have two pills left. Well... actually I have 7 pills left but no way admitting to that.

Receptionist (TR) has left a message for GP requesting an alternative medication and I should ring tomorrow afternoon to find out if GP will agree to an alternative.

Feeling apprehensive at the moment.
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

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby legsbestill » Mon Jan 30, 2017 5:45 pm

Wow, Polar Bear, that is anxious-making. I hope you get a satisfactory resolution.

Rustsmith
Moderator
Posts: 2635
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby Rustsmith » Mon Jan 30, 2017 9:57 pm

It is situations like this and the problem that Ann ran into getting her methadone prescription filled that make restricting our access to medications so absurd and borderline dangerous. We have some of the states in the US that are now insisting on pill counts, supposedly to make certain that we are not selling our meds. But these restrictions combined with problems in the distribution chain are becoming more and more common.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
Moderator
Posts: 14865
Joined: Thu Oct 28, 2004 6:37 am
Location: Chicago

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby ViewsAskew » Mon Jan 30, 2017 10:32 pm

Oh, PB - what a mess. The good news is that I think you can sub another benzo to prevent withdrawal - the Ashton Method has people switch to diazepam from clonazepam as it is easier to withdraw from (so says Ashton). I actually preferred temazepam - it is shorter acting and didn't make me so drowsy during the day. Hopefully they will realize that there are alternatives and that you NEED them IMMEDIATELY!
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.

badnights
Moderator
Posts: 4558
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby badnights » Tue Jan 31, 2017 9:37 am

PB, the few times I've been in that situation, the system has always come through for me. So hopefully yours will too.
Beth - Wishing you all restful sleep tonight
WED/RLS AUGMENTATION:
viewtopic.php?f=5&t=6532&p=61601#p61601
Discussion Board Moderator's posts don't reflect the RLS Foundation's opinion & are not medical advice

Polar Bear
Moderator
Posts: 6861
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby Polar Bear » Wed Feb 01, 2017 6:49 pm

Well.... yesterday, Tuesday afternoon I phoned my health centre to confirm that the prescription for an alternative medication to clonazepam had been left for me. No it had not, the doctor wanted to speak to me. To get a telephone appointment meant ringing at dead on 8.30am this morning to try and get one of the available telephone appontments of today.

Success, a doctor would ring me after this mornng's surgery at between 11am - 1pm. I requested Dr call my cell phone.
Dr phoned at 12.50pm, just as well I didn't go out as she rang my landline.

Following discussion Dr agreed to give me a two week supply of Temazepam 10mg. I have an appointment with my own GP in two weeks. When could I pick up the prescription ?? - any time says she, it is now written and ready for collection. Happy Days. So I drove the 25 minutes to the surgery. Skipped up the staircase full of the joys of Spring thankful that all was at last sorted................ and the shutter to the surgery was down, shut, it was Fort Knox. With a notice advising the practice was closed from 1pm for the rest of the day for purposes of staff training. A telephone call to them went to recorded message.

To say I was mad goes nowhere near to how I was feeling. So frustrated at the Dr's lack of communication in not telling me. A one hour round trip wasted. Tears weren't far away as I left the premises, I honestly felt like punching someone.

For a few weeks I've been fancying a bit of pink/purple in my hair - with the temper on me I was very gung ho and stopped at the Mall to see what was available, not even waiting to have my hairdresser do it (properly). Saw a friend in a coffee shop and joined her for coffee and cake while my adrenaline calmed.

Tomorrow I shall telephone the surgery to ensure the script for Temazepam is there for me. And all being well I will then arrive for pick up with my pink/purple streaks!! No idea of the depth of colour that will be achieved - sure won't it wash out eventually.

I'm off now upstairs with my tinfoil, cyclamen hair colour, tinting brush, protective gloves and an old dressing gown. Wish me well.

Fingers crossed that my medication is ready for collection tomorrow.....and that my home done foils are not a mess. :thumbup:
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

legsbestill
Posts: 349
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: Effectiveness of Gabapentin/Neurontin Over Time

Postby legsbestill » Thu Feb 02, 2017 12:21 am

Go Polar Bear! I LOVE the idea of pink/purple. I hope you are delighted with the results.

I had surge of adrenaline myself reading your experiences earlier in the day. How bloody dare they do that to you - mess you around and waste your time. Life is difficult enough with a condition like this ...


Return to “Prescription Medications”

Who is online

Users browsing this forum: No registered users and 3 guests