Discussion board newbie's story with meds

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.
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Discussion board newbie's story with meds

Postby 1962zebra » Sat Dec 16, 2017 4:53 pm

Hi. I've had RLS for longer than I remember - 15 years? 20 years? - and it is worsening as I age (now 55) as it is known to do.
My iron level is fine (167) and I don't drink, smoke or drink caffeine.
I am currently taking 1,200 mg of Gabapentin per night, staggering 4 300 mg capsules from about 6:30 - 10:30 p.m. Gabapentin Enacarbil is not available in Canada where I am. I also use a CPAP machine irregularly each night as I have borderline sleep apnea and sometimes snore, disturbing my partner. I am also taking Bupropion for mild depression.
A recent visit to a neurologist showed no nerve damage, but the Dr. suggested trying 5 pills (total of 1,500 mg) on nights when I don't have to get up early for work the next day. Neither 1,200 to 1,500 stops the RLS. I think it "mutes" it and delays onset. I usually don't get RLS while watching TV at night any more, but now I get RLS starting in the middle of the night - waking me up - and sometimes continuing when I fully wake up.
I went on Gabapentin while weaning myself off Pramipexole (.75 mg) which I was on for years, developing severe augmentation during that time. It took probably 3 months to get the Pramipexole out of my system.
Along the way I've also tried Clonazepam, Tramadol and Pregabalin, at various doses, usually trying to reduce the Pramipexole at the same time. Only the Clonazepam had a partial benefit but left me too groggy the next morning, not good if you commute.
I have not tried opioids but don't wish to; it was suggested by a sleep doctor as the next course of action if Gabapentin fails to work.
Gabapentin has delayed onset and the symptoms aren't as severe as when I was on Pramipexole, but I'm starting to think that I'm experiencing augmentation with Gabapentin even though it isn't supposed to occur with that drug.
Has anyone taken regular Gabapentin and experienced anything similar to augmentation?
I was optimistic when first starting Gabapentin but now I'm disappointed.
I am wondering about asking my doctor to supplement my Gabapentin with a very low dose of Clonazepam.

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Re: Discussion board newbie's story with meds

Postby ViewsAskew » Sat Dec 16, 2017 7:41 pm

Some of RLS treatment is personal - both how an individual responds and the side effects, as well as what a person is willing to take/try.

There is a significant number of folks who do not respond to gabapentin and related formulations. I never have. My guess is that it is related to how we experience RLS - I have what I call the creepy-crawly kind. Mine rarely has a painful component. People with pain may be more likely to find it effective. Many people here have commented that gabapentin seems to lose its effectiveness over time. Not augmentation, but that it simply doesn't work as well and they need to increase the dosage.

I am not sure that you can guess the effectiveness of any of the drugs you tried while augmented compared to now. In my experience, when augmented, nothing helps! So, could be worth trying them again, now that you are not augmented, so you can see what happens. It could be that any of those could be much better now...or not!

My thoughts about clonazapam and gabapentin together... they both can cause sleepiness/drowziness. Not sure what would happen if you took them together.

It is so hard to figure this stuff out, isn't 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.

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Re: Discussion board newbie's story with meds

Postby Rustsmith » Sat Dec 16, 2017 10:13 pm

I saw something the other day (maybe Nightwalkers) where one of the experts said that only 60% of patients get a favorable response to their RLS with gabapentin. For me, it causes drowsiness but does nothing for movement issues. I had a doctor insist that I try Horizant, it did nothing more than gabapentin other than lighten my wallet.

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.

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Re: Discussion board newbie's story with meds

Postby jul2873 » Sat Dec 16, 2017 10:30 pm

Since you're in Canada, where Kratom is legal, you might try it. There are a number of good threads on this site; just search for "kratom" in the search box.

It's been great for me. I've used nothing else for almost five years. I did try Gabapentin. I got the side effects from it, but no RLS relief. Good luck.

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Re: Discussion board newbie's story with meds

Postby badnights » Sun Dec 17, 2017 7:19 pm

Hi zebra
Congratulations on getting off pramipexole. That's no small job to do. Why are you leery of opioids? They are a very effective medication for WED/RLS. If you have had problems with addiction before, you would have reason to be extra cautious. If not, a normal caution is to never take more than your prescribed amount, and be sure that you take it for relief of WED/RLS symptoms, not for any other effect it might have. Personally I have never felt any other effect from opioids.

My history is similar to yours - I augmented on both ropinirole and pramipexole, was put on gabapentin which helped a bit at first but then did nothing, raised the dose to eventually 2100 mg with codeine as well; was taken off that abruptly and went thru 3 weeks of hell; ended up on hydromorph contin, which crept from 12 mg to 18-21 over a few years, but now I'm down to 9 mg from changing my diet.

Without the opoids, I don't think I would be a functioning human being. I would dearly love to get rid of them completely, but I also love to have a semi-normal life.

Gabapentin, I think, caused me a lot of problems from stopping abruptly - be careful of that one.
Beth - Wishing you a restful sleep tonight
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

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