Me again.

[Bobadam]

I am still fighting going back to the docs about my medication as I don't want to suffer from augmentation. It is frustrating at times but I am stubborn lol. I have came across a few comments out and about and wondering if you find the same. I mention I suffer from RLS and not only does it affect my sleep it has an impact on my life. The response is oh yes I get restless legs too. OMG they have not got a clue what we are going through. So I end up saying nothing and suffer in silence. My family understand and that is what matters.

[oldblue]

thats what matters bobadam, having someone who understands. i had a fairly good rest last night. good luck to you.

[ookla]

I've ranted about this before, but I think we totally got screwed when they named our affliction "restless leg syndrome" - that sounds so trivial, like something in the same category as "brain freeze." I guess I should be thankful they at least put "syndrome" in there... they probably wanted to call it "leg cooties."

[nightdancer in reply to ookla]

It was named Restless legs Syndrome in the 40's, ookla. By Dr. Karl Ekbom. he is the one who did the major research. Also, we don't have to say the name spelled out. Say RLS really fast, and then add that it is a neurologically based sleep disorder as an explanation. Emphasize neurological and sleep disorder. It is all 'they" need to know. The other name that a certain foundation (not this one in the UK) wanted to push on the entire world was worse, so they announced this year that they "gave up" my words not theirs. No one in the rest of the world would adopt the new name because the explanation was ridiculous. After 4 years, they figured out that he other name would not ever work and actually the WED acronym was illegal, breaking copyright infringements. Google WED and see what you get. Wedding magazines and wedding planners. If someone new was trying to search for info using only WED, they would find nothing. Enter RLS, and you get tons of info on an internet search.. It has always been RLS, and that is what we worked on- almost 20 years of RLS awareness in the States to be thrown out by one foundation that wanted to change the name? nope, it did not work, we just cannot change the name of an illness or condition on a whim, which was more or less what this was. I like Restless Limb Disease, instead of "legs" so it includes the arms. But, at least more people know the name RLS than any other name and that is the legal name. Even when they had "changed" the name, this foundation, the UK one, said "We felt very uncomfortable with the name change, so we polled our members and they felt the same". The US foundation supposedly did a poll ( I did the same kind of poll with the same amount of people), they said 90% were in favor of the name change, which was not what I got. I got 90% against the name change. So, RLS may not be the BEST name, but it is what we have, and what we have to work with. It is way better than WED.

[beady3]

We have all been there with the docs not got a clue,but get your imformation together and go back ,I know your family know what you are going through but it doesn't help with having no sleep ,have you had anything of the doc,I take Tramodol and am doing quite well but I have had rls for 37 years so I have had a lot different meds. Go back x

[soupy33now]

bobadam: I tried for years to get a Dr to listen. Then discovered they knew nothing about RLS and weren"t interested in learning--so I became my own Dr. Googled and studied and I'm still not in control but better. I take about 11 re-quip (ropinirole), some sinamet and Gabapentin each day. Lots of pills but I have no choice since I have awful spasms all day and night if I'm not heavily medicated. soupy

[Hidden in reply to soupy33now]

soupy what exactly is your Requip dosage..? 11 pills of Requip sounds as if you are taking a way too high dosage. Also sinemet is a only to take when you have intermittant RLS. Taking so much dopamine meds will result in you having augmentation, and i cant believe your doctor has allowed you to take so many dopamine pills.

[soupy33now in reply to Hidden]

Hi Elisse. Thank you for your reply. I heard pretty much the same thing from nightdancer but don't know what to do. My Requip is a 1 mg dose. The sinamet is down from 11 to about 2 in 24 hrs and I just added gabapentin at 600mg in 24. I have acute spasms which twist my body like a pretzel if the requip level gets too low. I've been to 2 neurologists and many gp's, but still am completely out of control. It controls my life. Help me if you can cause I sure need it. Soupy

[Hidden in reply to soupy33now]

Soupy, firstly, i am glad to hear that your Requip dose is only 1mg...phew.! You will need to get off both of those meds and that means help from your doctor as it means taking a strong pain med to help with withdrawals. There is lots of info on here about getting off a dopamine med. Put RLS and Augmentation in the search box at the top of the page.

[soupy33now in reply to Hidden]

My requip dosage is 1mg 11 times a day.

[Hidden in reply to soupy33now]

Oh my giddy aunt. not what i was hoping to hear. You are taking a dose that is used for Parkinson's Disease.

[soupy33now in reply to Hidden]

I spent the afternoon on rls and augmentation sites. Thanks so much for that tip. I think I've read everything else but not this one. Good info and I think I'm more in the natural progression and tolerance area than augmentation. But, as per your advice, I'm dumping the sinamet and will try to cut back on the requip. Its so good to hear from someone who understands.

[Hidden in reply to soupy33now]

Soupy. read this article. This by one of the best RLS Specialist that i trust and use his information all the time. Believe me, taking 11mg of Requip is wayyyyyy over what should be taken for RLS. Cutting back on the sinemt AND the requip by your self is almost impossible. You WILL need a backup med. sleepreviewmag.com/2015/02/...

[soupy33now in reply to Hidden]

Hi Elisse. Thanks for the Buchfuhrer article. I read it quickly and now will go back and read it slowly again and maybe again. Theres a lot of stuff in there. Very valuable. I'm beginning to understand that my local Dr is not going to be able to help me at all so maybe will look for a new neurologist. I live in a very small town and there is just not a good variety of help. I've been able to really stop the sinamet without much trouble but even cutting back on the requip scares me to death. And if I try a different approach entirely I need a Dr who understands the Buchfuhrer type protocal and that sure is NOT my local guy. So this is a walk through the woods blindfolded. Love your approach and appreciate any new stuff you want to throw my way. Nancy

[Hidden in reply to soupy33now]

You will need a strong pain med to help you through any withdrawals. So, you need to find a doctor or neuro who will prescribe that for you. Most people who have to withdraw from a dopamine med can cope with taking Tramadol. But it depends on how bad the withdrawals are. Dr B as we call him, uses methadone for his patients, but that needs a doctor who is well informed on augmentation and is not afraid to give a patient that med. I know across the pond it can be hard to get a doctor to prescribe any opiates. I wish you good luck, and keep in touch on how you get on.

[soupy33now in reply to Hidden]

Hi: What is your opinion on me switching from Requip to Mirapex.

[Hidden in reply to soupy33now]

My opinion would be no. They are both very similar.

[soupy33now in reply to Hidden]

OK, thanks. Just a thought.

[nightdancer in reply to soupy33now]

Yes how many mgs are we talking on "about 11 Requip/Ropinerole", and how much is "some" Sinemet. There should be NO need for Sinemet with that much Requip. The high recommended dose by the Foundations , the researchers, experts is 1-2 mgs tops of Requip. In your reading up on things, have you run into augmentation, as bobadam mentioned? Whatever the dose of your Requip tablets, "around 11" is too much and it will actually make your RLS worse over time. AND, adding Sinemet to that is adding fuel to the augmentation fire. If the Requip is not working or your RLS is getting worse (augmentation of symptoms from too a high a dose of dopamine meds) I have to say we deal with this issue in every group, every day. Finally ion one of my groups, someone said their new doctor said "oh your Requip dose is way too high!" How refreshing to hear someone say that their doctor knows about augmentation and is willing to get her dose tapered down. She is on 8 mgs and that is extremely high according to the NEW recommended therapeutic dose put out by the researchers and experts. There a few :old school" doctors that still think upping and upping the dose will help. Too much dopamine can turn on you and cause your RLS to worsen at these high doses. Requip should be taken at the same dose at the same time every day, not as needed, and not at that high dose. This is a case where "more is not better". Does not sound like you have a set dose of anything?

[soupy33now in reply to nightdancer]

Thanks for your thoughtful reply. WOW. Are you a medical person or a fellow sufferer? My requip is a 1m dose. I was up to 11 sinamet but have cut that down to maybe 2 in 24 hrs. I recently added the gabapentin at 900mg per 24 hrs and am not sure if it's doing anything. I've been to 2 neurologists and about 6 gp's. None of them said my requip dose was too high. I have acute spasms that involve my entire body getting twisted like a pretzel if my requip level gets too low. My RLS is hereditary and really took off when I was diagnosed with diabetes. It controls my life. I desperately need some help and would love to hear more from you. Don't know how to cut down cause I'd be in the nut house in 24 hrs without the requip. HELP

[soupy33now in reply to soupy33now]

Hi Nightdancer. I understand where your name came from cause my legs do a lovely little night dance also. Update as a result of your good advice. I was able to discontinue the sinamet completely without any problem. Now I'm stuck with the 11mg of requip in 24 hrs which made your hair stand on end. I don't think I can stop it completely so what do you think of switching to Mirapex?

[soupy33now in reply to nightdancer]

Are you in a group that I could join? I'm cutting out the sinamet completely but I don't think augmentation is my problem. I think its more natural progression and tolerance. But at any rate, I'll try to use the requip on a scheduled basis instead of an at need one. Thanks for the advice. Need all the help I can get.

[valeriedee]

Years ago I was given Temazepam to take at bedtime, it did help my rls, but over time results were not as good. Now I have the Relaxix pad & the combination gives me the relief i need. I am sleeping well & use the pad when resting in the day or evening.Maybe one day a proper diagnoses & remedy will be found

[nightdancer]

Bobadam, I had a friend whose wife always used to give me the "eye roll" when I brought up RLS. She drove me nuts. BUT, then she got pregnant, and 1/3 of all pregnant ladies do develop some level of RLS, even if they did not have it before. She had a very hard time sleeping, and when I visited them in CA when she was about 5 months along, she apologized to me, saying she had NO idea what I had been going through, but she knows now! Not that I would wish RLS on anyone, but I no longer get the eyeroll from her any more.

[Bobadam]

Until I started on the medication I had to try and sleep on the floor. Couple of hours sleep then a 12 hour shift. Thankfully mostly under control for now except a couple if times. They really have go live it to understand.