Giving up

[Kittykat1234]

Okay .. so I’m going to rant. I haven’t been able to get any sleep lately and the only time I do is if I take a bunch of medication to sleep which isn’t good for me. I’m still taking the second lowest dose of mirapex and it’s not doing anything at all.. taking magnesium 200mg a night and cutting back on my caffeine intake. I find tramadol works wonders but my doctor won’t prescribe it to me because it’s a “narcotic” any suggestions to what I should/ could do??!?

[Hoffie]

If you are in augment, the only thing that really works are narcotics. Find another doctor who understands Rls, preferably a neurologist

[Madlegs1]

Have you tried Kratom or med Marijuana? There are a few people here who have experienced them.

[Parminter]

The second-lowest dose is still too much and you are augmenting.

You will have to find another doctor who knows more. Alternatively, if your doctor is the sort of person who listens to you and respects you, then do the homework yourself and take it to him. It is hard work, you have to become as knowledgeable as possible, but it can pay off - it did for me.

Search for scientific papers online, print them out and take them to him/her. Doctors are not trained in this, they haven't a clue, so we have to do it for them. Not word of mouth or anecdote, just published science.

[Kittykat1234 in reply to Parminter]

Okay thanks, I wanted to bring this information up wth him about the augmentation but just afraid he will blow me off. Some doctors don’t believe In google

[Parminter in reply to Kittykat1234]

None of them believes in google, but all of them believe in scientific papers from the top medical journals. That is what you are after.

Here are just a few that cannot be faulted.

mayoclinicproceedings.org/a...

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

sciencedirect.com/science/a...

bmj.com/content/356/bmj.j104

ncbi.nlm.nih.gov/pubmed/297...

The last two are abstracts only, but you will get the picture.

The first thing you need to do, if you have not yet one it, is to check your ferritin level - it should be 50 or above.

[Kittykat1234 in reply to Parminter]

My iron is fine, I got it checked not long ago. I think the cause of it is the medication I take for my anxiety (celexa)

[Parminter in reply to Kittykat1234]

Ouch! Yes, that would not help at all - it's on the no-no list.

[Parminter in reply to Kittykat1234]

ncbi.nlm.nih.gov/pubmed/171...

[jewbie68]

Get your doctor to up your Mirapex on a schedule. You should increase it until you are not being bothered by rls.

[Kittykat1234 in reply to jewbie68]

Most people on here are saying to not increase it? I am hopefully going to see my doctor soon but just want relief now 😫

[Wonko_TheSane in reply to Kittykat1234]

In that case, if it's legal where you live, get kratom. One teaspoon with grapefruit juice and yi have a temporary solution until you can get a proper prescription.

[Jumpey]

Hi. In the past I have emailed Dr. Buchfuhrer and have taken a copy of his reply to my GP.. Dr.Buchfubrer also sent me an attachment of a research paper. It worked for me.Good luck.x

[involuntarydancer]

I would do a lot of research before following the advice of the person who suggested upping the dose of pramipexole (Mirapex). While it can afford temporary relief, Increasing the dose of that drug almost always leads ultimately to greatly disimproved symptoms and an extremely difficult withdrawal process. You should also be aware that many GPs are not familiar with this problem and will recommend increasing the dose when they shouldn’t.

It is not unlikely that that is part of your problem already and in your shoes I would be inclined to grit my teeth and gradually eliminate the pramipexole at least for three weeks or so. You may find that eventually your symptoms improve appreciably although they will initially worsen considerably as you withdraw from the drugs. Only opioids or stamina will assist with this stage of the process.

It is worth getting your serum ferritin checked and if it is less than 100 start taking a supplement as many sufferers find that raising iron levels helps a lot.

[rls_optimist]

I strongly second involuntarydancer's wise comments. Definitely DO NOT increase your Mirapex dose. As she pointed out, you are probably already augmenting, and increasing it will only make it worse for you in the end. And definitely get your blood ferritin level checked, as she suggested. If below 100, consider taking iron supplements. (Many of us here have had good luck with ferrous bisglyconate, taken at least 2 hours after last meal of the day, with 100 mg vitamin C or glass of OJ to help with absorption.)

Regarding opioids: they are the most effective medication for RLS (but of course must be used with caution). But as you're seeing, many doctors are afraid to prescribe them, especially lately. Here's a recent article written by several of the key RLS experts, on the appropriate use of opioids in treating RLS. It might help to print this out and bring to your doctor, or a neurologist:

mayoclinicproceedings.org/a...

Also, check out the very useful RLS Foundation website, especially for info on augmentation. Much of the info there is free for all, but it is also well worth becoming a member to get access to all their great info, and to support their important work.

rls.org/

Good luck!

[RLS1952 in reply to rls_optimist]

I had oxynorm in hospital for pain relief after brain surgery. Did not help with pain at all and legs were horrific for 20 hours so definitely not for everyone. By the way, Oxynorm was developed by the Germans in 1916 trying to make a synthetic nonaddictive morphine. Now one of the worst street drugs apparently.

[LasvegasEd777]

Try Kratom, it's the ONLY thing that works for me. Research it.

[Kittykat1234 in reply to LasvegasEd777]

I have been researching it. Not sure if it’s legal in Canada.

[maryenglund]

I have been taking 500 mg of magnesium and 500 of calcium. Maybe a little more magnesium than you are already taking will help. I don't think it would hurt to try. I augmented on mirapex as well and changed to gabapentin which has a different chemical base and the change helped my system. The magnesium and calcium helped so much that I am now on the lowest dose of gabapentin and I really need that more for sleep then for restless legs for the past 9 months or so. I had RLS for 17 years and this has been a miracle for me. I also avoid processed food when possible and cut down on sugar. Reasonable exercise as well. All of my suggestions I learned from folks on this blog so I am passing them on to you. Finding the right doctor is essential as others have been mentioning as well. All the best.

[RLS1952]

Gets in your head, doesn't it. When Sifrol stopped working and doctor said could not up the dose I did some research. Decided he was right not to give me more but needed relief so I consulted a naturopath. I now take 1000mg magnesium chelate three times a day. This form does not upset bowels. I also take two capsules Nature's Sunshine Gotu Kola with midday meal and two with evening meal. I am still taking 0.25 mg Sifrol (Dopamine agonist) at night but hope to come off it when naturopath thinks I am ready. like you I take an antidepressant. It is working really well and I am reluctant to swap and change. So I am delighted that the magnsium and gotu kola, a nerve and brain tonic herb, not addictive, are working so well. When I do get any rls it is mild and easily walked off. Or I do washing up ironing etc until they settle I sailed through Christmas despite sugar alcohol and a house full of people. This year I have bought a dedicated diary to keep track of things and hopefully ppick up any triggers not yet found. Phenergen is deadly for me. I rarely drink soft drinks but sometimes do when out as I do not drink tea or coffee and I suspect some brands. Stress does not help. etc etc Best wishes.