RLS for 30yrs

[Bat3353]

My diagnosis was discovered watching TV I went to so many doctors in Miami and none of them figured it out until I saw a clinical study ad for RLS I then went to a neurologist and I got my first. Mirapex it was a blessing I could sleep again then the Neupro patch for over 5 years but very expensive I started at 1mg didn’t work ended at 5mg but couldn’t fall asleep then added 2mg ropinorole would fall asleep for 2hr then 3mg and that was it but after so many years on the patch I was hooked on. It if I forgot to change it it would remind me then it would take a while to work again I tried other meds but would run back to the patch my doctor suggested or I asked for alternatives because I would become sleepy during the days and I tried 4mg ripinorole Extended Release and it worked with the RLS but couldn’t fall asleep so after 3 nights no sleep back to the patch and slept during the day so I tried one more time with the 4mg Ropinorole and added 3mg Ropinole and bingo that worked last night I slept great I’ve been told by this forum by other members which I aporeciated it and I found an other RLS doctor in the ORLANDO Fl area that I’ve made an appoint eme the to see that’s my story

[LotteM]

Thank you for your story. I hope your new doctor will indeed prove knowledgeable. Please research “augmentation” on this website, on rls.org and on rls-uk.org. Augmentation is a paradoxical worsening of symptoms as a result of te medicines that initially improved the symptoms of RLS. It applies almost exclusively to dopamine agonists, of which ropinirole and Neupro (rotigotine) are examples. Pramipexole is the other one mainly used for RLS. If you experience augmentation (I suspect you do, although Neupro with the 24h release masks the symptoms of augmentation), you will have to come off all dopamine agonists and better not start another.

Please keep us posted.

[Madlegs1]

Utterly classic story of the tragic consequences of medical ignorance.

I am keeping you in the palms of my cupped hands.

May you have all the strength and fortitude that you will require.

🌻

[Bat3353 in reply to Madlegs1]

So what does this mean I have to go cold turkey I go to what I thought was the best doctor and he has told me he has patients that have worse symptoms than mine I feel great today the grogginess is gone

[Madlegs1 in reply to Bat3353]

Lotte has pinpointed what you need to do.

One the the things we have learned on this forum, is that many doctors do not know as much about rls and the consequences of over prescription of Dopamine agonists, and the reality of Augmentation, as they ought to.

You don't have to go cold turkey (unless you wish to inflict untold misery on yourself, and your loved ones)

There are protocols for coming off DAs, - just read up the links Lotte gave you .

I wish you well.

[Bat3353 in reply to Madlegs1]

Thank you because it’s horible

[Madlegs1 in reply to Bat3353]

No harm checking out " Nick the Turk" s story of augmentation and getting through it successfully.

Try the search facility above top rt.

All the best. You can do it.

[nightdancer in reply to Bat3353]

I know wee have ALL found out that a LOT of doctors do NOT know how to dose the dopamine meds. See kaarina's post and go on the sleep review link. That explains the "protocol".

[Kaarina Administrator]

sleepreviewmag.com/2015/02/...

healthunlocked.com/rlsuk/po...

You may find these links helpful.

[nightdancer in reply to Kaarina]

Thanks for posting that, kaarina.

[Hidden]

Hi Bat3353, you posted about this 2 days ago, and i gave you some advice and one was you will have to wean off all those DA's.

[Sara_2611]

Hello Bat3353

Mine started years ago when I lived in Oldham.Id no idea what it was. I just put it down to poor circulation for a good while. At one point it got so bad I then made an appointment with the doctor & spoke to him in detail about it & he straight away diagnosed it as being rls which I'd never heard of & he explained it to me - hence he gave me the Balneum cream which Ive been on for a while & has been brilliant & a blessed relief

[CathyJoH in reply to Sara_2611]

Thought Balneum cream was for dry skin? How much do you use.

[Sara_2611 in reply to CathyJoH]

Hi CathyJoH

I just put a large blob on one finger that is enough for my toes where it starts & rub that in thoroughly onto my feet & then an even bigger blob that is enough to cover my legs & rub that in thoroughly

I only do this before bedtime when it kicks off pardon the pun. There have been rare occasions when it happens first thing in the morning as well so I put the same on .

Sometimes I have days & evenings when there is nothing happening at all so obviously I dont put any on at all

Its a great relief -& I find it a great help. I have to make it clear that I cant recommend it to anyone because it might not be for everyone & could have negative effects on other people's skin who try it without speaking to their doctor first about it

[Suhavard]

A very high percentage of this group including myself have been through your story. Read the links and wean yourself off slowly. Get your life back. You can do it. I’ve had RLS for about 40 years. This group has been a lifesaver.

[nightdancer]

The patch is the SAME medication as Mirapex, dopamine med. Also, that is way too high of a dose as others have said. It may be ok NOW, but you need to look up augmentation and dopamine meds. That is massively high dose of dopamine meds. Top dose is 1-2 mgs. Eventually 99% of people that get on high doses, your RLS will actually turn on you and you will get RLS 24/7 I say 99% so that if there IS an exception to the rule and there always is, we have THAT covered. But, just fair warning. After studying RLS since 1996 and working with RLS doctors, I feel VERY safe in saying, you could get into trouble, no matter how well it is working now. Search in the search box "Allaying augmentation" so that you can read that article by one the BEST RLS experts in the world. It is an interview for Sleep review magazine, and there is no better source that explains it better, so that anyone can understand it. Knowledge is power!

[Bat3353 in reply to nightdancer]

I am so lost I am disabled after 2009 I’m visually impaired I have to take theseeds because I have rls 24hrs a day when I was first diagnosed I was prescribed mirapex and it was low United mirapex stopped working then I was moved up to my current level but I want to beat this how low can I gonow that I’ve moved to pills I’m going to reduce them