Augmentation tied to stroke ?

Use this forum to discuss any issues associated with Augmentation
Silentmeow
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Joined: Mon Dec 23, 2019 12:59 pm

Re: Augmentation tied to stroke ?

Postby Silentmeow » Thu Jan 02, 2020 11:20 pm

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
Posts: 14
Joined: Mon Dec 23, 2019 12:59 pm

Re: Augmentation tied to stroke ?

Postby Silentmeow » Fri Jan 10, 2020 6:12 am

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
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Re: Augmentation tied to stroke ?

Postby Rustsmith » Fri Jan 10, 2020 12:46 pm

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.
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

ViewsAskew
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Re: Augmentation tied to stroke ?

Postby ViewsAskew » Fri Jan 10, 2020 11:59 pm

Silentmeow wrote: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.
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.

Silentmeow
Posts: 14
Joined: Mon Dec 23, 2019 12:59 pm

Re: Augmentation tied to stroke ?

Postby Silentmeow » Mon Jan 13, 2020 10:07 pm

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
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Joined: Mon Dec 23, 2019 12:59 pm

Re: Augmentation tied to stroke ?

Postby Silentmeow » Sat Jan 18, 2020 7:59 am

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
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Location: Palo Alto, California

Re: Augmentation tied to stroke ?

Postby stjohnh » Sat Jan 18, 2020 2:51 pm

Silentmeow wrote:...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.
Blessings,
Holland

badnights
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Re: Augmentation tied to stroke ?

Postby badnights » Sat Jan 25, 2020 7:17 am

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.
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.

Silentmeow
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Joined: Mon Dec 23, 2019 12:59 pm

Re: Augmentation tied to stroke ?

Postby Silentmeow » Sun Jan 26, 2020 9:36 am

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
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Re: Augmentation tied to stroke ?

Postby badnights » Sun Jan 26, 2020 11:13 pm

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.
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.


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