So, i saw the neuro today. Went through my whole speech about the legs, etc.
Told him the requip basically sucked, made my legs worse, caused insomnia and repetitive thoughts.
So....he puts me on.. mirapex.
W.T.F??
I flat out asked about methadone and he said, and i quote, "I don't prescribe methadone." With a really annoying tone.
So he tells me if the mirapex doesnt6work in 3 weeks and call him. His next option is a neupro patch.
He did recommend medical cannabis but i live in a state with legal recreational cannabis and i smoke a truckload already. Lol. It doesn't help my legs much at this point.
I'm so thoroughly disappointed.
I'm going to have to find a way to see Dr Winkleman at MGH. My insurance won't pay to see him so I'd have to pay out of pocket. I live 20 miles north of MGH. In fact, the doc i saw today is in the mgh network so i was hopeful he'd know wtf he was talking about.
Guess i was wrong.
Should i even try the mirapex? I don't know what to do between now and whenever i can see the dr.
It's funny, if i was a heroin addict, i can get all the methadone i want. (nothing against drug addicts, I'm in recovery myself)
SIGH!!!!
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Dogdoo
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We've often found here ,that neuro consultants know SFA about rls and even less about augmentation.
It is actually so serious, I reckon they should be sued for medical ignorance.
I got the same reaction about methadone from my family doctor here in Ireland ( they are actually not allowed to prescribe opiates, - but methadone seems to have a special negative vibe)
If you think you're augmenting on the DAs, then you should avoid any more.
I'm surprised the Gabapentin isn't being effective.- or had you stopped taking it?
As usual, I recommend strongly looking at possible triggers. So many things in the diet set off the rls.
A food diary is especially helpful in this regard.
I am still on the gabapentin but it is not helping.
I am surprised too. I don't take it specifically for the rls but it did use to help it.
Its pretty consistent regardless of what or when i eat. Or if i eat. I'll try to keep a food diary to see about any triggers.
Should i even try the mirapex?
I never went over .5 of the requip, in fact i usually took a half of one, sometimes only a quarter.
I don't think i was on it long enough/on too high a dose to augment per say. It just didn't work and exacerabated symptoms of other issues i was trying to address.
I already knew about the augmentation going in, so i was super careful about dosage. I tried to find just enough to help, not too much too hurt kind of thing.
Just feel like there has to be a better solution that that.
Then, there's a med with a high likelihood will work very well. But you can't have that.
As you say words beginning with F seem appropriate.
I'm so sorry to hear you're in such a pickle, ( a british saying).
It would seem that if neither dopamine agonists or a2d ligands work for you, then an opiate would be appropriate if you're happy to make that choice.
Getting a legal prescription for one, I know is really difficult, but from what I've read on this site Dr W can help. I'm sorry your insurance doesn't cover it.
You ask if you should take Mirapex in the meantime. Nobody can answer that for you. you have to weigh up the costs and benefits.
That's simple, the main benefit would be if it worked? That's the only benefit! I guess you'll never know unless you try.
If it does work, you'd probably know immediately, the first time I ever took the lowest dose of Pramipexole, it wiped out my RLS symptoms completely. If it doesn't do that, then it probably isn't going to work.
Whatever you do, if you try the Miapex, don't keep winding up the dose.
You can augment on the smallest dose within a year, easy. There is no safe dose.
Save your money and get to someone who has the grace to take you seriously. And who knows that what he is doing in changing from one DA to the next is ludicrous.
The methadone terror is absolutely irrational - it is a very good med in the right circumstances. I think it is less about the patient's comfort than the doctor's fear of authority. Cowardice.
BTW, MIrapex is the worst for augmentation and DAWS, this is well published.
Save your money, accept that you must change your spending priorities to save your life.
Hmm, when I was taking requip, I was taking 2mg a night. Sometimes that wouldn't work and I would take another dose. That led to 4mg. However, I was taking only 2mg for over 10 years before augmentation became an issue.
I feel your pain! So hard finding a doctor who truly understands RLS and how horribly it can affect your life! From what I have read and from what Dr Mark Buchfuhrer, the Stanford RLS specialist has written, once you augment on a DA your RLS will become worse. The Mirapex will only complicate the situation. I would definitely stay away from it! Have you tried Kratom? It can be ordered online and the red strains are more sedating which help calm the legs at night. It was the only thing that helped after I weaned off of Requip. It acts as an Opioid in the brain. I didn’t have much luck with Gabapentin either. Hope you find something that works for you......just know you’re not alone!
Hello!
I truly want to help, but don’t know how my help will be received since it’s different than what a lot of people on this site say (not that that’s wrong, of course). I will say what I want to say by stating my experience. Before I begin, I just want to say that we are all different in our experiences with RLS.
First of all, I am so sorry that your neurology appt. was so disappointing; there is nothing worse than getting disappointed!
Here goes:
I went through a way-too-long Augmentation period on Pramipexole in 2015 and it was Hell on Earth. Once I finally got help (the waiting lines can be horrendously long here,) I was switched to Neurontin. I told the neurologist to take me off of of this after about a month of it still not working. I was then switched to the Neupro patch, which I have been on for some years now. I started at 1mg and had to work my way up to 4mg before I felt comfortable. I am doing fine on it! Yes, I am slowly getting spreading to other parts, but things are good overall. To me, “good overall” is the best thing I could ask for! There is no cure for RLS, so we have to settle for “good overall”. I would rather have a “less-than-perfect, good overall” version of RLS with the ability to enjoy my life than use up my energy searching for that perfect solution (of which I don’t think there is one).
Conclusion, I wouldn’t dismiss another DA just because RLS research (and those on this site) tell you that once you’ve augmented on one DA, all other DAs are bad news. My experience shows otherwise.
Chin up, my good friend! Things will work out!👍
• in reply to
As you say it is worth considering, I just read an article that says extended release DAs can alleviate augmentation because augmentation might be related to the speed at which the drug is released.
I did the neupro patch from 1 to 4mgs for 2 yrs. Didnt help me and caused too many side effects. I was miserable.
Have you tried an edible? They are stronger than flower and help me to sleep a few hours.
Doc's get weird when you know more about the disease then they do. I would delicately suggest to your doc to go to Dr. B's website at RLShelp.org as theres info for doctors there.
I'm getting kratom on the internet @ approx. $100 per kilo which breaks down to 10 cents per gram. Check my numerous previous comments (replies) for the full experiences I've had using this remarkable RLS palliative. It worked great for a couple of years, but eventually tolerance caught up with me. But I was finally able to get prescribed the wonderous low-dose methadone from Dr. B.
Now, every 6 months I have to make a 500-mile round trip to visit him, thus proving that we are maintaining a "doctor-patient" relationship. For some reason, my Medicare won't cover the visits so the doctor fees are out-of-pocket for me, as well as another $150 per trip to get urine tested to prove that I'm not abusing the prescription.
If you can get a script out of MGH, it would be worth going through hell & high water to do so. Best of luck!
Yes, as stated above, I am paying out-of-pocket to see him. My initial visit was $360. My next visit, 6 months later, was $150. Add to that, another $150 paid to a lab on the same premises for a urine drug test. Not cheap, and I'm on a fixed income of only Social Security, but compared to the horrors of only getting 2-3 hours of sleep every night, it's an easy choice to make.
Thank you for disclosing this info. I was wondering the same thing, considering to go on my own account to see Dr B. I feared the fees would be higher.
Concentrated full-spectrum oil with a fairly high THC content (I use 33% THC) will give you much different results than smoking it recreationally. I do both, for different reasons :). Don't poo-poo it until you've tried it. The results are cumulative, so don't be disappointed if you don't experience an instant cure.
Next time you see this guy, bring one of the articles about methadone for RLS. I've seen several articles on this site and am attaching one of them. When he sees the heading of John Hopkins or Mayo maybe he will be influenced. I carry an article with me so when I see a new Dr. it may change his or her thinking. Sometimes doctors lie to their patients about opioid treatment for rls. It might be because of ignorance or fear. Whatever it is, having a document in hand stops them from perpetuating something that is not truthful. If you doctor is open-minded, he will read this and hopefully do some further studying and help you. If not, pay to see the experts in this field. Getting appropriate treatment for RLS is life changing.
Poor thing, I understand. I was too scared to ask my doc for methadone for same reasons and he too suggested I get some cannabis oil online, although it seems it will not help the RLS, but may soothe the anxiety I suffer because of knowing sleep will not come , well not much.
However, the Mirapex did work for me at first, after the Ropinerole, it was far gentler.....ho hum...doesn't work now after a few years
I was on Pramipexole for several years, then the augmentation. My doc told me, via her nurse, that I could "stop taking the Pramipexole and increase my night time dose of Gabapentin (I take for chronic back pain) from 1 to 3". Enter one month of sheer withdrawal Hell ... walking the floor all night unable to get to sleep, being a zombie all day from no sleep, not trusting myself to drive, etc. Now I'm apparently going to have a sleep study??
hi, I don't know if you have tried Neupro patch but it has taken care of my symptoms and Augmentation. I have been on it for about 3-4 years. In the beginning i had some insomnia but after a dose decrease it has gotten better. BTW, I have symptoms everyday of my life and have for 10years. Like many I cannot exist without medication every day.
The one caveate is that you must change at the same time every day. If I forget to change or put a new one on for just a couple hours, I experience horrible rebound symptoms. If early enough in the day ( i change in morning) i can catch up but if in evening or longer time off i am screwed. I have back up Mirapex if that happens.
BTW...How much Mirapex do people take. I need 1 mg. My doctor, whom i am changing, wont give me more than 0.5 mg per day. Says this is the "reccomended dose." AAAAARRRRRRRG!
I just had a physical today and they didn't run the ferriten test but the regular one they ran was over the normal range so i assume its going in the right direction.
I take it every other night.
I deal with constipation from other meds so every day wreaks havoc with my intestines.
And metamucil is expensive. Lolol
Honestly, the .115mg of mirapex has given me 100% relief so I'm happy at the moment.
I mean, the thing I'm seeking here, what we all here are, is relief from my rls.
I've found it, however long it may last.
I'm not going to not take something thats helping me because of long term side effects that may or may not happen.
Seems counterproductive, at least, for me.
I've been in remission from breast cancer frof 2.5 years so i figure I'm on borrowed time ao to speak. I'd like to enjoy my tume on earth comfortably.
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