RLS Intro

[rebelyells]

Quick Intro

I am a 58 year old grandmother who has had restless egs and PLMD for over 30 years. I have from my head to my toes every where including my private parts. So talking about being aroused 24/7 is not pleasant it is much the opposite. As far as sleep goes. Ha I probably get a couple restorative hours a night. Do that for 30 years. I wear the rotigone patch and take some mirapex. It gets worse with age. i am 58. I do not have any hope for real sleep in my lifetime. I just battled jaw cancer wear they took the fibula bone out of one leg to put in my jaw. imagine how happy my fibromyalgia and RLS and PLMD were about that. Today I was standing in the kitchen shaking passing out from a standing position drooling. I usually only pass out when I am sitting still. Sorry I guess I went over an intro, Hi guys,

[Leelee49]

Hi rebelyells, welcome to the forum that for many is a life saver. You sound like you’re going through hell, so sorry to hear. I’m sure the more experienced posters will be along to offer some valuable advice soon. Take care.

[Hidden]

Hi and welcome!

Oh good, it’s not just me then who gets down there. (Sorry).

I’m sorry for your plight. I’m on the Neupro patch as well. If you don’t mind me asking, what dose are you on?

Before others get in here, can I ask if you know the term augmentation? This is a side effect connected to dopamine agonists (both neupro and mirapex are dopamine agonists).

[rebelyells in reply to Hidden]

I am on 6 mg of nepro and 3 of mirapex and i do know the term augmentation i went to 12 mg of mirapex and a couple of decades before i hit that and the neupro sorry need to check spelling there has been my saviour trust me if i can get a couple hours sleep and dont walk around in the daytime vibrating wanting to crawl the walls i am doing good i believe like another person i read i have had this since childhood or was born with it i have been through several sleep studies and see a sleep specialist every couple of months When i first went on Mirapex it was lik a miracle i got m life back

yes I am aware that both are usually not taken at the same time and as usual i get screamed at by other doctors and pharmacists for what my specialists recommend but oh god trust me it took 15 years to get my initial diagnosis 30 years ago and i have tried a lot of things and right now this is working

it took falling asleep at work and losing my job and never being able to work again that was 30 years ago

can you imagine for years telling doctors that you have itchy creepy crawly feelings in your private parts and getting put on anti depressants

sorry i answered a few replies here

[rebelyells in reply to rebelyells]

sorry that is 3 x 7.5 of mirapex

[Pippins2 in reply to rebelyells]

Hi welcome can you just clarify you are taking a total of 3x.7.5 mg of Mirapex so daily amount is 22.5 mg? X

[nightdancer in reply to rebelyells]

Yes, can we please hear that dose again, it is astronomically high if the decimal point is 3 x 7.5 Even 3 x .75 would be too high. And, adding in 6 mgs, it is just too much dopamine.

[rebelyells in reply to nightdancer]

sorry 3 xx .25

if i am crawling the walls and the meds are not working i am augmenting

they are working at this time so i am not augmenting

the symptoms i described are when the meds are not working

the most i have ever got with working is a few hours restorative sleep a night and that is good for me

sorry I do have an extreme case and i am sorry for the mix up i do take a lot of meds sorry and messed up on the dose

[Hidden in reply to rebelyells]

You sound frustrated and I am sorry for that. It is more than frustrating.

I am with you 100% in not wanting to hear any more «you shouldn’t be on that» blah, blah, blah. I will not persue the augmentation issue anymore, so I’m sorry if I stressed you out/madeyou angry. Is there anything you would prefer that we talk about? How can I help make this more bearable for you?

[rebelyells in reply to Hidden]

I am sorry Jess there is so much going on thank you my grandson's name is Jesse my daughter is withholding my grandchildren right now I am a little more than frustrated but dont want to go there either just so much that is out of my control really um doing the one day at a time thing have a good ounselor at the primar care network next door

[TEAH35 in reply to Hidden]

Like I've said before, you can always learn something new on this site. I have had rls for 60 years and have it like you from my toes to my head ... but THAT is the one place that I have never had it. You poor dears. It must be awful.

[Joolsg]

Hi RebelYells,

I am sorry you are in such a bad situation.

Your symptoms scream Augmentation- the rotigitone patch and mirapex should never be taken at the same time. They are both Dopamine agonists.

Put Augmentation in the search box and you'll find many people just like you. We see at least 2 a day at the moment.

rls.org/file/what-is-augmen...

You need to get off both drugs slowly with the help of opioids. I think from your user name you are probably in the USA so you may find it difficult to find a doctor who will prescribe them.

If you tell us the dose of rotigitone and mirapex and how long you've been on them and where you are, we might be able to help further and give you names of helpful doctors.

Once off the dopamine agonists you can try Gabapentin or Pragabalin. Both are useful for RLS.

Let us know how you get on.

jools

[Hidden]

Oh my goodness me, you are so augmenting on those meds and it seems you know you are. I cant believe your doctor would be letting you take such high doses of two dopamine meds. If you want to get relief from your all over body symptoms AND get more sleep than you are , the only way is to get off both those meds, And that will be tough to do. Look at the link Jools has posted for you. And i have to say what you are taking is NOT working.

[involuntarydancer]

You poor, poor thing. I was on 1.5mg of mirapexin and I felt very bad. I can't imagine what it must be like to be on that much dopamine agonist. I really feel for you. No wonder you are so miserable. What country do you live in? You would probably have a good claim in medical negligence against your doctors depending on where you live. That is, by miles, the highest dose of dopamine agonist I have ever heard of.

[Lonely7]

Hi Rebelyells:

Welcome! I know you will find lots of help on here. My story is under 'Lonely7' and I joined just a short time ago and I have been helped greatly. I had been on Mirapex for years. The first few years it helped me a lot. But gradually I had to take more and more of it to get any results. So the side effects were disableing and now I have come off it, or I think I have. As you will see I have suffered from RLS for years and it has gotten severe. Yesterday I visited my Neurologist and he has put me on Oxykontin which I am told helps greatly. I was supposed to start it yesterday but when I went to the Pharmacy they had none in stock but are ordering it in today. Apparently a few years ago many Pharmacys were beeing targeted by break-in artists who were involved in the illegal drug business and they were looking for Oxykontin. So Pharmacys decided they would only have that drug on their premises if they needed and only enough to meet the need. They are going to call me at home today as soon as it arrives at the Pharmacy. You sound like you are having a most miserable time and I am sure you are. But you have come to the right place and I am sure you will find relief here from all of the good folks who have and are going through similar situations. Stay with it and don't given up because very shortly you will in all probability be feeling somewhat better. Oh I have to go. The phone just rang and it is the Pharmacy calling to tell me that the Prescription is now ready for me to pick up. So here goes. All the very best to you for now. I will watch your posts. You will be feeling better soon.

Lonely7

[LotteM in reply to Lonely7]

Dear lonely7, I sincerely hope the oxycontin works for you and you will have a quiet, undisturbed and very restful night ahead of you. And many, many more.

Have you come off mirapex completely? If so, kudos to do that without any help of strong meds Keep posting to keep us up to date!

[rebelyells]

Opioids are impossible to get in Canada the city I live in has waged war against them the car i rode in on the train today was painted in yellow war against opiods colours and said the exact words WAR AGAINST OPIODS on it. When I came out of 18 hours of cancer surgery a few months ago i woke up to them having taking me off my migraine meds and my restless legs meds and no additional meds for my pain of taking a bone out of my leg and taking one of of my jaw full of cancer and putting my leg bone there certainly no opioids I had to fight with a trachea tube in to get them reiinstated no opioids and please excuse my spelling have to be taken off the table as a solution.