Recently Diagnosed

Whether new to RLS/WED or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Brynmr
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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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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: 15
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: 15
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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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 & IRON:
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: 15
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.

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

Re: Recently Diagnosed

Postby Brynmr » Mon Aug 20, 2018 4:01 pm

After reading many comments in this forum, it's clear to me that an effective treatment for RLS/WED hasn't been developed. People go from drug to drug, dosage to dosage, combination to combination. It's a little depressing but then challenging I suppose. I'll try to stick with challenging. I guess I'm feeling a little depressed today.

Polar Bear
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Re: Recently Diagnosed

Postby Polar Bear » Mon Aug 20, 2018 4:41 pm

Challenging ?? There is no doubt that this is a challenging disease. In particular because just when it 'just maybe' seems that a medication, or a cocktail of medications is working, the rug gets pulled from beneath us.

We know that we are all so different, what works for one etc. and what worked for us last week may not work next month.
We hope for the best, that our symptoms are nearly covered, for most of the time. We plan events around our symptoms and have our ways of dealing with what we know will be for example, a stressful journey. I always carry my daily medication together with my 'emergency backup'. A few extra pills for when there is absolutely no alternative.

However....... now and again we have a spell when we are taking a med that works, so we enjoy it while it works. Or we have a good day amid a bad spell.

I guess we have effective meds for some of the people for some of the time - or most of the people for post of the time.

I'm sorry you are feeling depressed today. It is such a bummer.
Two nights ago I was in total despair. Sitting in the garage at 4am feeling really sorry for myself..... I'd walked around everywhere else and reckoned might as well give the garage a turn. Some months ago I was prescribed a calcium channel blocker for unexpected high blood pressure which resulted in swollen ankles and calves. That brought with it an awful burning which is possibly peripheral neuropathy, haven't been to the Dr yet about the burning but do have an appt. It has eased somewhat but does rear its head at night. I had a wee spell where I was totally miserable, rls, swelling, burning, insomnia.... blah blah blah....

But guess what, next morning the sun shone, the symptoms had eased, rls and the burning, I made sure I was well medicated (I detest how many meds I take) and made sure that I stayed ahead of that day's symptoms. Making sure that all meds were taken on time and no slacking such as, I'll get them next time I go upstairs because I'm ok right now. That of course is a wrong move, always stay ahead of symptoms.

One thing is for sure, we know exactly how you feel, we understand.
And there is usually another med to try, a different dosage, a med cocktail.
I hope today is a better day for you
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

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

Re: Recently Diagnosed

Postby Brynmr » Tue Aug 21, 2018 10:54 am

Thanks for that, Betty. I'm fine today. I feel bad for your situation. All the best for future success. I know attitude is important and 90% of the time I'm positive. So far I have little to complain about really. This Gabapentin is working pretty well. Sometimes it doesn't get absorbed into my system enough so I have to take another cap around 3:00 in the morning but it's no biggie. Others are suffering far more than I am. I'm just not used to the uncertainty re: treatment. It has a 'wild West' feel to it.

Polar Bear
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Re: Recently Diagnosed

Postby Polar Bear » Tue Aug 21, 2018 8:39 pm

Wild West is a pretty good description :)
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

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

Re: Recently Diagnosed

Postby Brynmr » Mon Oct 15, 2018 8:28 pm

Increased Gabapentin dosage to 1200mg daily. This has been working for about 4 weeks now.

Btw, any of you guys experiencing erectile disfunction with Gabapentin? Also blood pressure. I noticed an increase of about 15 point. Maybe I'm just getting too old.

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

Re: Recently Diagnosed

Postby Rustsmith » Mon Oct 15, 2018 10:33 pm

No ED, but I regularly go up and down on my gabapentin dose because I have difficulty reaching orgasm when the dose gets to 900 or 1200.
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.


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