Augmentation tied to stroke ?

[Silentmeow]

The hemp cream and Epsom salt baths have really helped reduce the pain and increased the time between meds. I am being careful. No weird feelings. Woke up with one of my balance episodes where it’s really bad and the rls is gone ,but I still took the meds this time. But why did it disappear, now as the balance gets better the rls will be back. It’s weird! My primary doctor did order another iron test though.

[Silentmeow]

I saw my primary care doctor and she knew about augmentation. She agrees the dose of Mirapex is too high and thinks the neurologist is going by the amounts used for treating Parkinson’s. She feels switching to tramadol may hard to get neurologist to do because of the push away opioids. She thought the Neupro patch might be worth a try. My iron level was 117. She is ordering a sleep study since it is to the point where I can fall asleep sleep at a stoplight. She gave me ways to approach neurologist about the mirapex being too high. So I am ready.Appointment not until end of next week.

[Rustsmith]

Sounds like you have a wonderful GP and a neurologist that you may end up having to replace (if that is possible for you).
I really hope that things go well with the neurologist, but you probably should not expect too much.

[ViewsAskew]

I saw my primary care doctor and she knew about augmentation. She agrees the dose of Mirapex is too high and thinks the neurologist is going by the amounts used for treating Parkinson’s. She feels switching to tramadol may hard to get neurologist to do because of the push away opioids. She thought the Neupro patch might be worth a try. My iron level was 117. She is ordering a sleep study since it is to the point where I can fall asleep sleep at a stoplight. She gave me ways to approach neurologist about the mirapex being too high. So I am ready.Appointment not until end of next week.

it is so helpful to have someone in your corner.

[Silentmeow]

I saw the PA at the lung dr today for checkup as I have some lung disease and discussed sleep study with her and she agreed it was necessary and put an order for approval to insurance.
Next up is neurologist appointment on Thursday.

[Silentmeow]

I saw the neurologist and told him the Mirapex was no longer working and it was time for a different drug. I told I had researched and eliminated several meds for one reason or another. I said I narrowed it down to the patch or tramadol and he said he felt the patch was better. It is ordered and should be here next week. I could have gone at him in a very negative way but figured I wasn’t going to accomplish much. I have several medical issues he has to deal with and it’s hard with each office visit to cover everything. I wish I had more choices here for doctors but I don’t. He needs a partner. He is a good doctor, overwhelmed with with patients.
Now to see if the medicine works,

[stjohnh]

...he felt the patch was better. It is ordered and should be here next week....
Now to see if the medicine works,

Be aware that Neupro patches are expensive. Not only that, 30-40% of people can't use them because of the severe rashes that are common. Additionally, augmentation occurs as well. For these reasons I urge you to get only 10 patches from the pharmacy. Even if the prescription is for 30 patches, the pharmacy will give you 10 of the 30 so that you don't have to pay for a whole month if you find out you cannot use them.

[badnights]

Unfortunately, since you are probably already augmented on the pramipexole, you will require a higher dose of the Neupro patch than you otherwise would, and it might just mask or prolong your augmentation - in other words, give it a shot, but don't get your hopes up too high. Do everything you can to eliminate symptom triggers (avoiding anti-histamines, and figure out if any foods are a trigger for you; and if any of your other medications could be a trigger) and maybe take vitamin D and magnesium since they seem to help some people.

"My primary at one point wanted me to go to the Mayo Clinic in Jacksonville but they repeat all the tests I have had been through again. She agreed that is what they would do. So I will just have to follow the rule wean slowly like with prednisone and hope for a substitute."

I don't know how closely they're affiliated with the Mayo Clinic in Rochester, which is a certified RLS Quality Care Center (certified in a rigorous procedure by the RLS Foundation, which also hosts this discussion board). But if they are closely affiliated, it would be worth going thru all those tests again just so that a doctor who knows something about RLS/WED might look at the results and meet you and consider your case.

[Silentmeow]

You are correct so far it has not been perfect. Daytime has been fine which is better then before . But at 8 pm like clockwork the legs start. One night I had taken the bath with epson salts and it wasn’t too bad ,next night no bath but I ended up taking .25 of Mirapex and finally I slept,last night was really bad . I started Folic acid and had sprayed my legs with the magnesium spray. Whether the spray had the opposite affect I don’t know.( I started patch on Wednesday) The plus side is I don’t have any problems during the day. I have read up on Taurine and have thought of trying that. I do take vitamin D and 250 of magnesium I can’t take more of magnesium as it messes with my gut. I know I will probably have to increase it 2 mg but try other ways first.

[badnights]

Increase what to 2 mg? the magnesium? or the Neupro?

Have you reduced the Mirapex to only that 0.25, or are you still taking more thruout the day?

Don't worry about magnesium or any of those things you mentioned making the WED/RLS worse. Any worsening will probably just be random fluctuations or something we don't know about yet.

[jul2873]

Ann, in one of the posts on here you talk about having a hard time not forgiving yourself for being on a DA for so long. Maybe it will make you feel better if you know that the horrific early experiences you had were what convinced me to stay far away from the DA's. I can't even tell you how many doctors have tried to get me to take them, but you were very convincing. And I think you are the main reason that now, at almost 80 with 40 years of RLS, I'm doing okay. I take Kratom and occasionally an opioid for long plane rides. But my life is good now. And I am very, very grateful to you and the other posters because of your warnings.

And it's still happening with doctors! Two weeks ago, when I was trying to explain to yet another doctor why I wouldn't give up kratom for Ropinirole, she said, sarcastically, to me, "And where did hear about augmentation? Dr. Google?" But I just smiled at her, and didn't say anything. If you and so many of the other early posters hadn't been so convincing, I might have given in. Thank you, thank you!

[ViewsAskew]

Ann, in one of the posts on here you talk about having a hard time not forgiving yourself for being on a DA for so long. Maybe it will make you feel better if you know that the horrific early experiences you had were what convinced me to stay far away from the DA's. I can't even tell you how many doctors have tried to get me to take them, but you were very convincing. And I think you are the main reason that now, at almost 80 with 40 years of RLS, I'm doing okay. I take Kratom and occasionally an opioid for long plane rides. But my life is good now. And I am very, very grateful to you and the other posters because of your warnings.

And it's still happening with doctors! Two weeks ago, when I was trying to explain to yet another doctor why I wouldn't give up kratom for Ropinirole, she said, sarcastically, to me, "And where did hear about augmentation? Dr. Google?" But I just smiled at her, and didn't say anything. If you and so many of the other early posters hadn't been so convincing, I might have given in. Thank you, thank you!

You are very welcome and I am glad that we were convincing. I joined this and have stayed for so long because I hoped I could help someone avoid what I went through.