Recently Diagnosed

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Brynmr
Posts: 6
Joined: Sat Jul 21, 2018 3:15 pm

Recently Diagnosed

Postby Brynmr » Sun Jul 22, 2018 3:31 am

Hey everyone! I'm a retired commercial illustrator, though I occasionally take the odd assignment. 2 months ago I was diagnosed with RLS after I explained to my GP what had been happening to me for the past 6 months or so. Actually, I have no idea when these uncomfortable symptoms started but by the time I got to the doctor's office I was having really bad nights. He put me on the dopamine agonist, ropinirole which did nothing. Then the anticonvulsant, Gabapentin. Gabapentin 300mg at bedtime worked really well for a few weeks but lately the symptoms began bothering me around dinner time (5 or 6) so I added another 300mg at that time. I'm not bothered by the side effects - don't experience fatigue or any other negative symptoms - only a relaxed, laid back kind of thing. No biggie. Of course it's only been 7 weeks on Gabapentin so we'll see how it goes. I bought a couple of books on this disease which I like and I joined this forum. I want to be informed. I think it's important. One question off the top of my head is when is it the best time to take Gabapentin? Before a meal? After a meal? I understand it's a bit dodgy getting the drug into the small intestines so there should be a best condition or time to take the drug. Anyway, thanks everyone.

Rustsmith
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Location: Pueblo, Colorado

Re: Recently Diagnosed

Postby Rustsmith » Sun Jul 22, 2018 11:18 am

There generally isn't any restriction on taking gabapentin with or without a meal. Due to the small intestine limit, it probably isn't a great idea to take it with a big meal. Also, you should be aware that the max dose of gabapentin is quite high. I currently take 600mg at bedtime to help me fall asleep (it doesn't do anything for my movement issues). I have been as high as 1200mg, but cut back because it was causing issues with my ability to reach orgasm during sex. And of course, there is always the possibility of Horizant. I tried it, but it didn't work any different for me than gabapentin, except that it was draining my bank account far quicker, even with insurance.
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.

Brynmr
Posts: 6
Joined: Sat Jul 21, 2018 3:15 pm

Re: Recently Diagnosed

Postby Brynmr » Sun Jul 22, 2018 12:55 pm

Thanks for that. Yeah my doctor said to try one or 2 (300mg) capsules at bedtime and I've read that patients need to adjust the dosage as needed. I guess like most of us, we'd like to keep the dosage as low as we can. I won't be using gabapentin enacarbil. Way too expensive for me. Gabapentin is cheap at $6 for 60 300mg capsules.

Brynmr
Posts: 6
Joined: Sat Jul 21, 2018 3:15 pm

Re: Recently Diagnosed

Postby Brynmr » Tue Jul 24, 2018 4:50 am

So Refractory RLS is RLS that's not controlled by the DA class of drugs? If so, that's what I have.

badnights
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Location: Northwest Territories, Canada

Re: Recently Diagnosed

Postby badnights » Fri Aug 03, 2018 5:14 am

You mentioned that ropinirole did nothing. That's pretty unusual for WED/RLS. A supplementary criterion to aid diagnosis is that a dopamine agonist like ropinirole will have, at least initially, a positive effect on symptoms. When you weren't medicated, did you experience disturbing/disruptive sensations that could only be relieved by moving your legs or walking? And did you feel an urge to move while you were having those sensations?

If not, there may be a different diagnosis that would be more appropriate.

Refractory WED/RLS won't respond to first-line therapy - that is, DAs or alpha-2-delta ligands (anticonvulsants including pregabalin and gabapentin) - due either to augmentation on the DAs, side effects, or lack of efficacy. Both DAs and the alpha-2-deltas are now considered first-line therapy.

.
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

Brynmr
Posts: 6
Joined: Sat Jul 21, 2018 3:15 pm

Re: Recently Diagnosed

Postby Brynmr » Sat Aug 18, 2018 11:34 pm

Yes, the symptoms were as you described. It was torture to lie still in bed at night which is why I got up and exercised like crazy. Even that often didn't help. After a couple weeks of awful nights, I went to the doctor.

Lately I've been upping the gabapentin dosage from 300mg to 600 - 900mg at night. Sometimes I wake up at 2 or 3 in the morning with symptoms. One time was really bad so while I was waiting for the extra cap of gaby to kick in, I reached for the wine in the fridge. It had no effect on the RLS but it lightened my mood.


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