First Time Poster, Long Time Sufferer...

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DSK99
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Joined: Wed Feb 11, 2015 5:55 pm

First Time Poster, Long Time Sufferer...

Post by DSK99 »

I guess you could say I was always a bit fidgety. Twitches, tics, that sort of thing. I lived a relatively normal life for 43 years and never thought much about it.

The life I knew changed about 4 years ago. Following surgery in one of the best hospitals in NY to remove a benign tumor from a nerve in my thigh, I developed profound Chronic Fatigue, with a wide range of new and debilitating symptoms, including insomnia, hypersensitivity to light and sound, carpel tunnel syndrome, digestive issues, sinus and eye problems, etc. I went from being an avid runner and bicycler to being bedridden and desparate, practically overnight.

Over the past 4 years, I've visited a lot of doctors, and tried a lot of different prescriptions and supplements. I eventually settled into a routine that kept me functioning at an acceptable level, but far from the person I was before i got sick. I work and take care of my family, but i often feel i'm a day away from falling apart again.

As I said, I've always been fidgety. But I guess i didn't realize just how bad it had gotten until my wife finally said something to me. We were in bed, going to sleep, and I was bouncing around like my toes were plugged into a light socket. I tried to think back to when it had started getting so bad and the more i thought about it, it seemed like forever. I've always had a hard time just not moving, just sitting still, just relaxing. I remember my brother saying things to me about it when we were kids, a long time ago.

I was in denial for a long time; I thought it was voluntary. I thought I was moving because I wanted to. Until I tried to stop, and of course, I really couldn't. I read about RLS, but my problem was happening all day, morning as well as night, so I wasn't sure it was RLS because everything I read suggested it was more of a nightime problem. Also, my problem extended to my torso and neck, sometimes my arms, and it didn't really interfere with my sleep, just my falling asleep, or so I thought.

I had been taking Wellbutrin for several years to help with the CFS fatigue and thought maybe that was the cause, so with the consent of my Dr., I tapered off. I kept twitching and turning. My wife was convinced I had MS. I scheduled an appointment with a Neurologist.

The Neurologist thinks it is most likely RLS. Sent me for bloodwork (ferritin of course), and an MRI and EMG of the lower regions as well. Don't have those results yet, but he started me on Requip. I've taken just .25mg for the past two nights. It's such a low dose, but I do feel like it has quieted my movements after an hour or so, and when I first wake up. But, by 10 or 11am, I'm back to twitching...

So, I guess I'll see what the tests say and I'll titrate my dose higher and see if I can get some lasting relief. Who knows... maybe I am moving in my sleep and it's affecting me more than I realize.

I just want to feel normal again.

ViewsAskew
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Re: First Time Poster, Long Time Sufferer...

Post by ViewsAskew »

Hope your doc can help you figure it out. Sometimes we find that there are multiple things going on - neuropathy, say, and WED.

Per the ropinerole, .25 is not really a low dose. It is for Parkinson's, but the latest research has the specialists saying that no one should take more than 1 mg a day total (.25 for pramipexole). Keep it as low as you can. Especially if your ferritin comes back to be below 100.

And, a sleep study is very important with you may be moving in your sleep - periodic limb movements instead of WED/RLS. Many people have these and the movements do not interfere with sleep. But, for some of us, they do. Oh, and ropinerole does take at least 60 minutes to work, so, taking it a minimum of an hour before you are trying to sleep is important. It can also be hard to get "ahead" of the symptoms when they occur all the time.

An alternative could be rotigotine. It's much newer and hopefully will have a lower incidence of augmentation (when the drug makes the symptoms worse).
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.

DSK99
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Joined: Wed Feb 11, 2015 5:55 pm

Re: First Time Poster, Long Time Sufferer...

Post by DSK99 »

Thanks for the response and advice. I did have a sleep study a couple of years ago. It didn't turn up much.

I have been taking the ropinerole about an hour before bed, but I think I need it earlier than that. As for the seemingly constant daytime symptoms, I'm thinking of trying an early dose tomorrow, maybe mid-morning to deal with RLS during work hours.

I'm also wondering if the Wellbutrin I was on could have caused augmentation. Wellbutrin also works on dopamine...

Polar Bear
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Re: First Time Poster, Long Time Sufferer...

Post by Polar Bear »

I am not aware of Wellbrutin causing augmentation, it is generally accepted as being WED friendly.

You say that your symptoms were occurring during the day as well as at night before you started ropinerole.
Indeed, it was the same for me. My symptoms were 24/7 in arms and legs for many years before starting the medication which has brought relief but as Views has mentioned, it is important to try and stay ahead of symptoms. It is much harder to relieve the symptoms once they have started.

it is good if you are managing to get your required sleep at night.
Please be careful about your dosage. It is considered that 1mg should be the max for daily ropinerole.
When I started ropinerole a daily dose of 4mg was deemed to be ok, and so that is what I take, it is much to much and it may in part contribute to ongoing chronic insomnia.
Although insomnia may indeed be another side of WED/RLS. We are all different in how we react to medications and in what medications help some of us and not others.

This book is wonderful, 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. 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.
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

DSK99
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Joined: Wed Feb 11, 2015 5:55 pm

Re: First Time Poster, Long Time Sufferer...

Post by DSK99 »

Thanks, Polar Bear, I'll check out the book.

ViewsAskew
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Re: First Time Poster, Long Time Sufferer...

Post by ViewsAskew »

The only cases of augmentation are the true dopaminergic drugs and a few cases with tramadol. But, any antidepressant can cause WED symptoms. it's not augmentation, but it can just cause them to happen. When it's stopped, the symptoms stopped. As Polar Bear noted, Welbutrin is considered WED friendly....but there are definitely a few folks who have found it was not friendly to them!
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.

badnights
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Re: First Time Poster, Long Time Sufferer...

Post by badnights »

I suspect that ropinirole is not going to work for you. I echo the cautions - keep the dose as low as possible! Your ropinirole dose would have to be jacked pretty high to cover all-day symptoms, and the higher the dose, the greater the risk of augmentation. You might be at high risk already if your ferritin is less than 75 microg/ml.

If possible, don't be the guinea pig your doctor learns on, like I was. Find a doctor with experience in treating severe WED/RLS.

And learn all you can about augmentation. Take selected printed information to your doctor, ask him his opinion on it.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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DSK99
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Joined: Wed Feb 11, 2015 5:55 pm

Re: First Time Poster, Long Time Sufferer...

Post by DSK99 »

So if ropinirole is not a great choice for all day symptoms, what is?

ViewsAskew
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Re: First Time Poster, Long Time Sufferer...

Post by ViewsAskew »

DSK99 wrote:So if ropinirole is not a great choice for all day symptoms, what is?


Ropinerole is in the same class a pramipexole and rotigotine - called dopamine agonists (we often use DA). Some doctors still think these are a good choice. Others think it's only a good choice IF your serum ferritin is at least 75 to 100. Yet others, such as Dr Earley in this video (https://www.youtube.com/watch?v=670OqkhMjD4), seem to think that it's not a good choice at all.

Doctors such as Earley appear to be embracing the alpha 2 delta drugs - gabapentin, pregabalin, or gabapentin encarbil. While these do work very well for many, they do not work for everyone and they can have serious side effects (but many drugs can!). Just be aware of the potential issues and they are definitely worth a try.

Other doctors think that rotigotine is a good choice. While in the same class as ropinerole, it works differently (it's a patch) and that greatly decreases the potential for augmentation.

Most doctors will not consider opioids until you've tried at least two DAs and failed them and tried at least two of the alpha 2 delta drugs, and so on. Opioids can be very successful.

Another option is to alternate two categories - such as to use a dopamine agonist for 1-3 weeks, then take something else for awhile. I am on a schedule (subject to change) of 5 days of pramipexole followed by two days of methadone. When you alternate, you can prevent the worst problems: augmentation, dependence, and tolerance.
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.

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