Need Support

Whether new to RLS 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.
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oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Need Support

Post by oceanwalker »

Hello ...I am new as well and like most here going through hell and need support so so badly too.
I am not really sure how to navigate this site yet. I did indeed register as a member ...
Am on ropinirole,clonazepam,emtec,gabapentin,and a few other meds for other things.
I am very happy to have found this site through a dear friend who found it for me. My doc will not refer me to a neurologist nor do I believe he truly understands WED/RLS.
Right now I am at my witts end as well. Having a place to go and reading everyone's info helps so much. I read that a lot of ppl loathe Mirapex? Could you please tell me why? My doc wants to try it next :( and I don't. His last attempt at trying something new was a muscle relaxer (Bacloven) it was terrible.
Thanks for listening.
Sincerely, Oceanwalker:)

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

Hi oceanwalker - you'll get the hang of the forum over time.

I moved you're post to its own topic - that way people are more likely to see and respond to it. To start a new topic (or thread, as they are also called), you click the New Topic button on the upper left of the screen.

Let's start at the beginning. How long have you had WED/RLS? When did you start taking medication? What's happening that the medication isn't working?

You are on several medications and I think you're right - your doctor probaboly isn't very knowledgeable about this disease. You are likely going to have to find a new doctor.
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
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need Support

Post by badnights »

There is something that has worked with some doctors who don't know the disease, depending on their personalities, and that's to take a medical publication about WED/RLS in to your appointment. Before you go, you read it and highlight the parts that are relevant to you. Keep the highlights to 2 or 3 key things, because the doctor will skim, not really read. Tell your doctor you found this paper(s) about RLS (which has been re-named Willis-Ekbom disease), and you think some of it applies to you. Then say something like "could you tell me what you think?".

I am not sure what your focus should be, without knowing more about your situation (eg. your answers to Ann's questions) but for example, if you are augmenting, you could take in the augmentation brochure printed by the WED Foundation. This is a copy of it with highlights on some pertinent parts:
Augmentation_hilited.pdf
(87.53 KiB) Downloaded 157 times

For a clean copy that you can print and highlight different parts of, click the first link directly under my signature below.

The brochure on iron might be relevant to you, as well: Understanding WED/RLS and Iron

Mirapex/pramipexole and Requip/ropinirole are both dopamine agonists (DAs) also used in Parkinson's. They are notorious for causing augmentation of WED/RLS after a time, and studies show that people with low ferritin levels are more susceptible to augmentation on DAs.

Augmentation, if mild, can be treated by taking an additional, earlier dose, but raising the dose more than once to accommodate augmentation is now regarded by specialists as counter-productive, since the augmentation escalates and eventually other problems emerge as side effect of high doses of DAs. This might be what you have heard of.... pramipexole especially but also ropinirole can cause impulse control disorder, which manifests as a loss of control over impulses. For some people, this is eating, for others, shopping, sex, gambling; for some people, it ruins their lives; for everyone who experiences it, it is destructive to some degree.

About 75% of people on DAs for RLS/WED will eventually augment, according to a fairly recent study that looked at long-term DA use. It used to be thought that only 20-30% would augment. Despite all that, some people use daily DAs successfully.

Hope some of this is helpful.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hello Beth and Ann and all and yes you are all so very helpful!!!! Augmenting yes yes and eating...:( since May..I had gained 10 lbs. :( Prior to that i was a good (normal for me) weight.
My first episode with RLS was in my early 30's and I was up all night. I had no clue why my legs were feeling the way they did.
The next episode was after my 5spinal fusions. (surgery again) I had it so so bad (of course this was when I slowly went off of the pain meds). Once off of the pain medicines (which I believe ? could have masked the RLS at the time?) the RLS was there each and every night and all night long. It would not cease until approx 7 am and then I had some peace and sleep. I had no clue what this was. Told the doc and he immediately referred me to a neurologist who thought I was stressed. Then; at the time many more doctors etc. Finally the right neurologist and a weekend in a sleep disorder clinic in Vancouver and after that I was diagnosed with RLS and PLD...mainly RLS. They used clonazepam to treat it. After months of no sleep I slept; and once again life was normal. Many years after that I experienced the odd night of an episode and I would use a half of 0.5 clonazepam and in bout one hour fall asleep. This was usually around 3am. So no RLS only the odd night..until after this last surgery in May. Again ..if the surgery was at fault..could have once again been the dilaudid masking the RLS. Thank God bcos it was a knee replacement. Although I had a knee replacement as well last year and no RLS. I was diagnosed with cancer in 2009 and had surgery as well. No RLS after that surgery. I am cancer free for 4 years now.
Sorry for going on and on . To answer your Q I have used clonazepam for over 20 years. It always works. It never goes up either. If anything I lowered the dosage. I was put on ropinirole in May (.25 and then it was upped over a period of time.) It worked for 5 to 7 days and then the RLS was back. So .. I hope this answers your Q's :) I as well am on gabapentin and 3 emtec for pain / day. Emtec is similar to Tylenol #3 with NO caffeine. I only drink one cup of coffee/day and never finish it. Do not use alcohol nor smoke. Lately I have been eating too much ..but just cannot get a grip on that one. Addicted to plain hot air pop corn. :( I wish to thank you all for your information, kindness and sharing:)) thank you so so much!!!! Especially about the info re: going to my doc. Ty again!!! :))

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Need Support

Post by rthom »

Just a note some of the meds used to put you under can aggravate the RLS/WED and they are listed on the Foundation site--usually it's something to tell the anesthesiologist ahead of your surgery. Just future info, Maybe that has something to do with the difference you have found from one surgery to another.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hello again Beth and Ann and everyone else:) ( still getting used to navigation here)
Thank you for all of your help!!! As always.
My doc as well wishes to switch me from ropinirole to mirapex.? I understand it's the same DA so what 's your opinion? TY
May I add I am on 1 mg/day of ropinirole and I am NOT increasing it no matter what. He wanted to increase it. But I believe you are all correct I am augumenting. One more iota is that yes Beth you're probably correct. I believe they use a sort of medication equivalent to an anti nausea for conscience sedation for the Knee replacement surgery. I had the same anesthesiologist for this surgery as before. I never ever thought of RLS returning so I did not ask about *what they use.* TY for that insight!! Although I hope to never have any other surgery again . One never knows though. Last night I did sleep from about 10pm to 1:30am and then from 3am to 4am YaY! Ty again from myself and my loving extremely supportive husband ! Without his understanding I don't know what I would do in a relationship?

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Need Support

Post by rthom »

do your symptoms get worse when you take gravol?

ViewsAskew
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Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

Just my opinion - and I am NOT a doctor! It makes no sense to take another DA or to continue taking a DA once you augment. It always, from what I've seen, leads to further increases to come - usually relatively soon. My guess is that you've already had increases and that you're taking the other meds to help cover for the augmentation. That's a vicious circle that had only one end - stopping ALL medications for awhile and using an opioid to get through the increased symptoms (when you stop the DAs, you will get worse symptoms).

Show your doctor the information about augmentation. Be humble (even if you feel you're likely right and he's wrong), and say that you found this and think it's related to your situation. Do NOT say you found it on the internet! Doctors are very wary of what's on the internet (for many good reasons). Do say that it came from the WED Foundation, though. Ask him to read it and let you know what we thinks of it and to get back to you.

Many of us here have been in the exact same place as you - it's very frustrating, scary, and exhausting. But, there is a way out of this nightmare.

First thing to do - ask your doctor for a serum ferritin test. This is very important. Surgery aggravates WED/RLS sometimes (not always), and one reason may be blood loss. We know that people with WED/RLS need to have higher serum ferritin than do people who don't have it. So, ask for the number - don't let him say, Oh, it's fine. It needs to be at least 50. We also know that your chances of augmenting are MUCH higher if your ferritin isn't at least 100 when you take a dopamine agonist! It sounds to me as if you augmented in a week (I did, too - my ferritin was 8). Your ferritin may not be low, but I'd guess there is a good chance it is. You do not want to take any DAs until your ferritin is at least 100!

You noticed that after surgery you had no issues with the symptoms - that's because opioids (pain medications) are often used to resolve the symptoms. We aren't exactly sure why, but there is some evidence that the opioid system in our bodies is related to WED/RLS. Opioids work for the majority of people. But, doctors don't like to use them. The good news is that few of us seem to get addicted - the rate is lower than in people who don't have WED/RLS.

Next, is to think about other things that could be contributing to your symptoms. Some drugs worsen it - if you're not taking anything other than what you told us, you're fine. If you take anything else, it's possible it could make it worse. Low levels of vitamin D can worsen symptoms, as can low levels of any B vitamin.
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.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Thank you all (both) Ann and Beth and everyone!! for this input. I will do as you suggest and say a Prayer first. LOL but it's really not NOT funny. If doctors would only listen a bit more to their patients.
I believe you're all correct that I am augmenting. There's never a good time to cease the DA and go through the hell. After all ..it only takes a few days to one week to get over it. So ??? DO you suggest that after I am off the DA I stay off of them?? And I know these are all suggestions..and I as well know that this is NOT medical advise. Just suggestions . Suggestions I so so appreciate:)
My doctor wants to put me on Mirapex and I will NOT do that. NOT!!! Evern if I take the Rx and have it filled. I will NOT take them.
Okay I will take the WED info to my doctor and deal with this properly without being fearful or overly assert myself with him.
Again I thank all of you for all your support you have so far given me. I love everyone's posts and I love this site and so so happy i am here. To read,listen and learn. sincerely, Oceanwalker. [will keep you all posted] tyvm!!

ViewsAskew
Moderator
Posts: 16259
Joined: Thu Oct 28, 2004 6:37 am
Location: Los Angeles

Re: Need Support

Post by ViewsAskew »

It's not always as easy as just stopping them and a few days of hell. It can take a few weeks. There are some who've managed to stop (when augmented) without anything else. But, most of us have needed an opioid to help us - I won't lie - some of us had those scripts from our doctors, some of us begged, borrowed, or obtained them by less than legal means. Without a doctor on board to help, it can be tough. I tried three times to stop - the first two on my own. I caved in by day 5 or so both times. I hadn't had more than a few micro-periods of sleep and just couldn't take the constant PLMs during waking - my legs jerking under me while trying to stand and walk. Not everyone gets increased PLMs during waking, thankfully, but there always is increased WED/RLS.

It may be worth trying on your own just to see how hard it is. As I said, we've had people get through it. You might be one of them. If you can't, then you know you're going to have to have help.
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
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need Support

Post by badnights »

It might be over in a week or two, but it might take longer than that .. a month, or even more. Usually I think the worst is over in a week or two. No studies have been done on this. Nor have any studies been done on how to best withdraw. Personally I would stop all at once, to minimize the length of the withdrawal period. You know it will be hell, and whether you burn at 600 degrees or 4000 degrees is not going to matter. What is going to matter is how many days and nights you can survive without sleep while being tortured incessantly.

Go in to see your doc with hope in your heart and goodwill toward him. Show him what you have found, and ask his opinion on it. Tell him you will leave it with him. Raise your concerns and ask for his opinion.

And if he is still an a..hole after all that, fire him.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Hello Beth and Ann and once again Thank you for your Posts&Your Support!
I truly understand and truly believe both of you.
I am planning on seeing him...(twisted my new knee badly:( and nursing it)
Will see him with that Hope in my Heart!
Sincerely, Oceanwalker

rthom
Posts: 1530
Joined: Sat Dec 31, 2011 3:03 am

Re: Need Support

Post by rthom »

:thumbup:

badnights
Moderator
Posts: 5870
Joined: Tue Mar 10, 2009 4:20 pm
Location: Northwest Territories, Canada

Re: Need Support

Post by badnights »

Good luck :)
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

oceanwalker
Posts: 128
Joined: Fri Aug 23, 2013 12:02 pm
Location: BC Canada

Re: Need Support

Post by oceanwalker »

Thank you and I will keep you all posted. I see him next week due to our Labour Day Holiday here in Canada.
Sincerely, Oceanwalker

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