Newbie from Vancouver Canada.

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.
Sparklymermaid
Posts: 1
Joined: Sat Feb 18, 2017 6:08 pm

Newbie from Vancouver Canada.

Postby Sparklymermaid » Sat Feb 18, 2017 6:51 pm

I thought I would introduce myself as I am new to this site, thank you. I have had RLS for 25 years, mainly in my left leg at night. I tried different things, like the soap under the sheet, calm pills etc but eventually I went to the Doctor and started on mirapex. I became addictive to my computer which sounds very odd but I could hardly put it down, luckily that is all my addiction was!! The Doctor changed me to Roprinrole 2mg every night. They mostly help but not all the time. I take the pill at 8pm and fall asleep at 10 and then I am awake on and off all night, not always with the leg shaking. I have gone to work after being up all night, and I survive. Every few months I get very depressed and hate my leg. The Doctor has given me Tridural 200mg also to take daily. ( I am not sure what they are doing as I have no pain, just frustration).

Polar Bear
Moderator
Posts: 6621
Joined: Tue Dec 26, 2006 4:34 pm
Location: N. Ireland

Re: Newbie from Vancouver Canada.

Postby Polar Bear » Sat Feb 18, 2017 7:55 pm

Welcome to the Discussion Board, we are sorry that you have need of us, but glad that you found us.
So your medication began with mirapex and then you changed to Ropinerole 2mg. First of all your dosage of Ropierole is above what the RLS experts would now consider an acceptable daily limit. 1mg is considered to be the daily limit.
I also take Ropinerole, for many years, and I began mine when it was considered ok to take up to 4mg daily. This is not now the case.

If you take your Ropierole 2mg at 8pm and you still get symptoms during the night, have you considered splitting your pill. Using a pill cutter to halve it and take half at 8pm and the other half at around 2pm?
Tridural is another name for Tramadol. When do you take this? Do you take itat nighttime bearing in mind that this is when your symptoms mainly occur. You are saying that you have no pain but Tramadol will help with the symptoms of RLS even though it is not a 'pain' as commonly understood.

This book is wonderful, it is easy to read and can be used for discussion purposes with your doctor. It covers all aspects of RLS.
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.

Also, have you had your ferritin serum level checked, this is pretty important. It is a blood test that is not normally done with routine blood works and you need to ask for it. This tells the level of iron stored in your brain – and that is what is important to us sufferers of WED/RLS. We need a level of around 100, especially if we are taking a DA drug such as mirapex or ropinerole. When getting the results of this test please ask your doctor for the actual level = do not accept ‘normal’ as an answer. Doctors and Labs may consider 20 to be normal… but it isn’t normal for us.
You should organise this test, it is important that you know your ferritin level.
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

SLEEPY ANGEL
Posts: 49
Joined: Fri Feb 10, 2017 4:34 pm

Re: Newbie from Vancouver Canada.

Postby SLEEPY ANGEL » Tue Feb 21, 2017 11:47 pm

Re: Newbie from Vancouver Canada---
by SLEEPY ANGEL.
You are living in a gorgeous City from what I can see (pix I've seen) and I hope to get there someday, tho. I'm on the east coast of the US, quite a trip. Might be aggravating to fly that long with RLS, but ... we'll see! I am rather new at the Forums, and can tell you I've been on Ropinirole about 7 months but augmentation was becoming a problem... I split my pills (TOTAL is 1 mg) in order to start around 6PM and take the last of it about 9 PM. My Neurologist has added Gabapentin (100 mg at 5:30 pm and 200 mg at bedtime---- to make me sleepier). This regimine is fairly OK, but can't be said to be VERY reliable. Every PM is different. I plan to start a diary to keep track of foods, coffee, exercising,or activities; it may show a pattern as far as what gives the best night's sleep for me. Luckily, I don't have symptoms during the day UNLESS I am being lazy and sitting around too much. Don't know what will happen when I'm older & grayer and just can't be very active. Good luck finding good advice here, and I wish you well!


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