New to the forum :)

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PeaceAngel
Posts: 9
Joined: Wed Jun 18, 2014 5:02 pm

New to the forum :)

Post by PeaceAngel »

Hello to all fellow RLS sufferers!!

I am Lauren. 29 years old, mother of two beautiful girls and have suffered from RLS since i was about 16 years old.
As a teen it was only the occasional night here and there and i never thought much about it. Fast forward three years and i find my self pregnant with my first child and the beginnings of a life filled with sleeplessness, pacing around the house and generally going crazy!

For years i managed to get some relief from just taking some paracetamol but the last four to five years it has gone beyond that. Codeine was introduced along with high doses of Magnesium and a few other vitamin and mineral supplements. This was ok for a while but as of the lat year it has gotten out of hand. Nothing was working, at all! After having surgery to remove my wisdom teeth last year i was given a packed of oxycodone pills and quickly discovered, for those 20 days the RLS was completely gone while on the pain meds. What a bitter sweet time that was. I knew i couldn't go to a doctor as just ask for the oxy's as i would likely get laughed at and sent on my way but i did go to a doctor who put me on Repreve. This worked great at a low dose of .25mg for about a month and then i had to increase to .50mg, another month later i had to up the dose again to the point where within three months of beginning the meds i was taking up to 4mg a day. The digestive problems that came along with the reprieve was horrid. I was vomiting almost every day, feeling sick, light headed and like i had acid churning around inside of me but persisted just to get a few hours sleep of a night. Finally this last week i went to see a new doctor who took me off the reprieve and is trying me on Biperiden.
I am only a couple of days into this new med and i haven't really been able to form a real opinion on it as of yet so time will tell if it is going to be successful or not.

I look forward to chatting with people who are in the same boat as me. Those who have never suffered the wrath of RLS really do have no idea just how torturous it is and it is nice to connect with those who have lived/living with this pain in the butt syndrome!!

ViewsAskew
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Re: New to the forum :)

Post by ViewsAskew »

If I could write a story that exemplifies the WED person, it would be yours. Mild, then worse, accidentally find out that opioids work...

SO, REpreve, or ropinerole, is a wonderful drug and a horrible drug. You experienced augmentation. It seems great at first....then comes the increased doses and increased symptoms.

I know little about biperiden. It's also a drug used for Parkinson's, but it's not a dopamine agonist. It's an anticholinergic - this works differently than ropinerole and similar drugs. I have not read any studies about using this drug. That doesn't mean it will not work! Do let us know the results.

In the meantime, has the doctor told you what's next to try if this doesn't work?

And, you're just new off of ropinerole - you could have increased symptoms for up to a few weeks. The WED specialists suggest that a person use an opioid during this time - not forever, necessarily, but just to get you through the madness. Some people find it's not too hard to stop; many of us find it's a very difficult transition.

You are so right - people who do not have this have NO clue!
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.

Polar Bear
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Re: New to the forum :)

Post by Polar Bear »

PeaceAngel - what a beautiful Username.

If you were taking 4mg 'ropinerole' daily you may (as Views has said) have pretty strong withdrawal symptoms and may need some help from your doctor to get through this.

Try this book, it is easy to read and can be used for discussion purposes with your doctor.
Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening. These Authors are at the top of the league when it comes to the treatment of WED/RLS. The book covers all aspects of the disease. Make sure you get the Second Edition.
It can be found on Amazon.

I'd also suggest that you have your Ferritin Serum level checked. This isn't normally done in routine blood work, so ask for it. Also when the results arrive, ask for the level. Drs may consider around 20 to be normal.... but us folks with WED/RLS want to be up around 100.

Please let us know how you are now coping, and if your new medication is of benefit. It might be hard to tell whilst you wait on the ropinerole getting out of your system.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

PeaceAngel
Posts: 9
Joined: Wed Jun 18, 2014 5:02 pm

Re: New to the forum :)

Post by PeaceAngel »

Thanks Polar Bear for the heads up on the book. i will certainly look into ordering a copy, and i will def make sure i bring up testing ferritin serum levels with my doctor when i go back this week.
So far, two nights in on the new meds (Biperiden) and I'm wishing i had never been introduced to it lol!
Its definitely not suited to me. Complete body weakness/numbness, brain fog, blurred vision and sleeplessness are bad enough but the hallucinations are out of control! 20 hours after dosing and I'm still not feeling quite right, plus, after all that it did nothing to stop the sensations in my legs. Stopping this new med already as i can't cope with these kinds of side effects on a daily basis. I think my doc was talking about clonazepam as the next drug to try and also getting me into a sleep study program.
Im also trying to get an appointment with my naturopath to see if he can help me get this sorted as well as i usually try and tackle any health issue with alternative medicine before going mainstream. i would hate to be on these kids of heavy meds for the rest of my life lol.

EeFall
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Location: Washington State, USA

Re: New to the forum :)

Post by EeFall »

Welcome to the forum! I hope everything works out for you. There is a lot of good information on the board and many of us with severe RLS who know how it is to live with this. I am off to bed to try to get some sleep...

ViewsAskew
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Re: New to the forum :)

Post by ViewsAskew »

PeaceAngel wrote:Thanks Polar Bear for the heads up on the book. i will certainly look into ordering a copy, and i will def make sure i bring up testing ferritin serum levels with my doctor when i go back this week.
So far, two nights in on the new meds (Biperiden) and I'm wishing i had never been introduced to it lol!
Its definitely not suited to me. Complete body weakness/numbness, brain fog, blurred vision and sleeplessness are bad enough but the hallucinations are out of control! 20 hours after dosing and I'm still not feeling quite right, plus, after all that it did nothing to stop the sensations in my legs. Stopping this new med already as i can't cope with these kinds of side effects on a daily basis. I think my doc was talking about clonazepam as the next drug to try and also getting me into a sleep study program.
Im also trying to get an appointment with my naturopath to see if he can help me get this sorted as well as i usually try and tackle any health issue with alternative medicine before going mainstream. i would hate to be on these kids of heavy meds for the rest of my life lol.


Please reconsider clonazepam. It really isn't suited to your situation.

If you stopped ropinerole recently, your symptoms are increased/heightened from augmentation. The ONLY drugs known to get you through this are opioids. Clonazepam could actually be dangerous because it can make people dopey/drugged and you'll still likely have symptoms. It also can be very difficult to stop. If you do try it and take it longer than two to three weeks, be careful when you stop taking it.

If the doctor will not consider an opioid, it's going to be a tough few weeks.

But, even if he or she does, you still need something to resolve the sensations that make you move. The most likely category are the alpha 2 ligands. These include gabapentin, gabapentil encarbil, and pregabalin. If those do not work, a few older antiseizure drugs could.

I appreciate you wanting to use a naturapath. Hopefully you will find that your WED is related to diet or supplements. Many of us find it is not, unfortunately. Iron is extremely important, however, so make sure you get both the serum ferritin and the hemoglobin test. If you read recent posts in the Non-prescription Medicines, Supplements, Diet section, you'll find some ideas of what has helped the most people.
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.

PeaceAngel
Posts: 9
Joined: Wed Jun 18, 2014 5:02 pm

Re: New to the forum :)

Post by PeaceAngel »

ViewsAskew i do appreciate this information so much! i certainly will be equipped with a lot more knowledge when i return to see my doctor this week.
In the meantime, i do have a packet of oxycodone here for the night times until then. My dad, who is on the oxy after a shoulder reconstruction was nice enough to hand over a packet for me, so technically its not doctor approved but at this point in time, i don't care. I am so bloody happy to have something to give me some relief of a night time, for now anyway.
Weather my naturopath can help me out or not, who knows! this disease is the great unknown isn't it but i will cross my fingers and hope i have some success.

Polar Bear
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Re: New to the forum :)

Post by Polar Bear »

i don't care. I am so bloody happy to have something to give me some relief of a night time, for now anyway.

Here's hoping you got some sleep :)
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

glfngrl
Posts: 29
Joined: Thu Dec 13, 2007 3:50 pm
Location: Thomson, GA

Re: New to the forum :)

Post by glfngrl »

PeaceAngel,

So sorry you are having such a difficult time at such a young age......wish I could offer comfort that it gets better with age, like wine, but alas, just ain't so!

My advice is to find a doctor who will prescribe whatever works for you. Forget about the critics who scream "addictive, addictive" every time you take something that works. If you can get by with small doses of an opoid to start, then increase only when absolutely necessary, they should benefit you for a long time, with few side effects. Have you tried Tramadol? Have you eliminated alcohol, caffeine, nicotine, artificial sweetners, and excess sugar from your diet? Have you tried a "moderate" exercise regimen? (Too little, or too much, are both bad.) Sometimes, a combo of two different types of drugs will help, and you can keep the dosage of each lower. Unfortunately, we often have to give up a lot of otherwise pleasurable things in order to facilitate a better sleep pattern...

New research indicates that more than 1 mg. of Repreve (ropinerole) a day for RLS will gradually exacerbate augmentation.......plus the amount you were taking leads to all the other side effects you were having. This high dosage is only advised for severe Parkinson's, not RLS.

You have come to a good place - everyone here understands exactly what life is like living with RLS/WED. I often say that we would get more "respect" if our family, doctors and friends could experience
restless legs for just one night!

Jane in GA
Give up is not in my vocabulary!!

Polar Bear
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Re: New to the forum :)

Post by Polar Bear »

With regard to the dosage of Repreve (ropinerole), there was a time when 4mg was considered satisfactory as the max daily dose.
It is only in more recent times that it is now considered to be too much and that 1mg should be the maximum daily dose.
Alas.... this is too late for me, When I first started ropinerole 4mg was considered ok and I have been, and am, still on the 4mg daily and know that it is indeed much too high.

But it is not too late for newbies to ropinerole - 1mg max daily.
And I think that mirapex is also in the same boat and something like .25mg is considered the daily max instead of the previous 1mg daily.
Betty
https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

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