Restless Legs Syndrome (RLS) Discussion Board

My system to make sure I take my medication is to put the bottles on the bathroom sink top in the morning. At around 8pm I fill a cup with water, pick up my jar of ropinerol, take out two tablets and without putting the jar down, swallow them. Then I put the jar on a small table on the other side of the bathroom. I use the same system for taking thyroxine at 10pm.
Two nights ago I was going out at 8pm. To make sure I took my ropinerol before going out, I went into the bathroom at exactly 8 but went to the toilet first thereby forgetting to take my medicine. When I got home and saw the jar of ropinerol still on the bathroom sink I couldn't be sure if I had taken it or not and I didn't want to double up.
My legs had been fine up until going to bed at about 10:15. Then they started to ache and I missed my chance of falling asleep. I tried until 11:30 then got up. My legs continued to hurt and got worse and worse. None of my usual activities worked, they just hurt more and more until I was crying, walking, stretching etc. I couldn't even concentrate enough to work on my jigsaw puzzle or read. Finally at 2:30 I just said Stuff it and took two Tramadol which allowed me to get to sleep until 4:15am when my legs started to hurt again so it was up until about 5:00am and back to bed until 6:30am.
Needless to say, the next day I was a basket case and finally took a long nap in the afternoon. I got a pretty good night's sleep last night, only getting up twice for a short time.
I hope that was a good enough lesson so I don't ever forget again.

Poor yankiwi, it will happen again if you're like me. No matter how hard I try, I forget. I use the bathroom sink method for my asthma meds but I regard my WED meds as much more important, so I have phone alarms for them.

I used to have 6 per day but I'm down to 3 - 5:30pm for the first hydromorph contin, 9:00 for the second batch, and 12:00 midnight to remind me that I'm supposed to be sleepy and taking my zopiclone (which I never take right then because I know I won't sleep).

Tonight I was writing a long (boring) post on this board when my 9:00 alarm went. My alarm plays a song for 10 minutes, then stops. I decided I would just finish what I was writing ..... well almost 3 hours later, I realized had forgotten to take them. Even with a phone alarm, I forget! If I can ignore a 10-minute alarm, gee.... I was pretty dismayed.

It's a horrible moment when you have that realization that you've forgotten (or weren't sure so didn't double up). And, usually a horrible night to follow! I wish I could say that I had a foolproof method...but my experiences mirror Beth's.

I can say that I do not do it as frequently as I used to. And, changing things makes it worse. I'm usually better when I've done it the same way for a long time. As with Beth, it's when I'm doing something that feels important and think, I'll get to that in a second, that I'm usually in trouble.

It is such a horrible moment when I realise that I've forgotten to take my meds. Usually discovered about two hours late ...

Thanks for your support. I'm not new to RLS (20 or so years) but I'm new to medication except for a brief unsuccessful trial with Sinemet about 10 years ago. I'm finding medication to be a two-edged sword and there are no specialists available to me in New Zealand. This forum (and information on the Foundation's website) are my lifeline.

It's brutal when you need to train your doctors. I feel for you.

Yankiwi -
This book is wonderful, it is easy to read and can be used for your own information purposes and for discussion with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. Make sure to get the second edition. These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon.
I really really recommend this book.

I just ordered "Clinical Management" from Amazon. I've been meaning to for a while but usually have time in the evening and I can't sit and have trouble concentrating if my legs hurt but I'm okay tonight. I look forward to reading it and sharing the information with my GP. He's supportive which is a good start.

In my copy of the book there are pencil markings, notations, post-its, so that I can go to the relevant pages quickly.
Occasionally I've photocopied text, shown GP where it is in the book and then give him the photocopy for perusal.

A supportive GP will be eager to learn from the book. Things will be looking up for you, I think! I hope, at least!

The book arrived early! Last week I couldn't get an appointment with my GP but got one with another in his practice. She was very open to prescribe hydrocodone for movies and car rides as suggested to me by Dr. B. but it isn't available in New Zealand. She thought my having the book was excellent. I'll wait to see my regular doctor to sort an alternative out.
I've cut my before bed ropinerol to 1.5 tablets (about .62mg) and take a tramadol when I wake up in the night. That seems to work fairly well but tramadol doesn't work in movies or car rides. WED is the most bizarre condition--a moveable target of symptoms and solutions.

Good to hear that your book has had a good reaction from the doctor that you saw.
With regard to the tramadol not working for movies/car etc. will your doctor allow you to take 2 tramadol on such an occasion.

Good luck with your appointment with your own GP.

I love stories such as this! A doctor willing to listen! YAY!

Interesting that the tramadol doesn't work in the car. As Polar Bear suggested, you could try 100 mg instead of 50, if the doctor would allow it.

Also, there is a chart in the book with all the opioids listed. There is likely something close to/equivalent of hydrocodone that is available where you are. Would your doc prescribe that?

I looked at the book for a hydrocodone equivalent (a medium potency opioid) and all they had listed was tramadol. I wondered if maybe they would prescribe codeine at the upper end of the dose recommendation. But I doubt they would, especially because tramadol is being used already.

Morphine hay the same potency as Hydrocodone and there also is Dihydrocodeine. It is double as potent as the regular Codeine and not a Shedule II drug