Restless Leg Syndrome

General
1

Hi Everyone. Did anyone here develop RLS post-op? If so, what medicines do you take for it. The following is to the best of my memory. Post-Op from the craniotomy (10/2011) I had some loss of feelings in both legs before I even left the hospital to come home. Left leg came back within 1 week but the right leg was not returning to normal. Neuro put me on Gabapentin (aka Neurontin) and legs were both normal within 2+ months of the operation. She took me off the Gabapentin and all was fine. I had complete feeling in legs. I should stress I had normal feelings in both legs like before the operation. About 3 months later I developed RLS out of nowhere and it has progressively been worse. By early evening I am going crazy from the symptoms of it. My Neurologist put me back on the Gabapentin but its not giving me any relief. I'm into my 3rd month of it. I will be seeing my Neuro in about 2 weeks to let her know the Gabapentin is not working. I read and researched what I can do to relieve the RLS. I can't sleep without the aid of Ambien which is not working anymore unless I take double the dose and of course I cannot and don't want to.

Any suggestions would be of so much help before I see my doctor. I am so desperate. Thanks everyone. Jeanne

2

'Feel for you-can drive you crazy! The drug mirapex helps me:)

3

Thank you Marcia. That is one drug I never heard of for RLS. I will ask

my doctor for that or anything else besides the garapentin. As fast as RLS

comes on, maybe it will go away someday just as fast.

4

Hello Jeanne, its funny you write about this cause I was researching a while back and even asked my physician and he just ignored me. I found articles but they all are about going on different medications or natural herbs. I have suffered from RLS for many years and I find that whenever it starts and I can't put up with it any longer I will take a long shower with cool water. I also saw a program on TV that says that the best thing is to do stretching exercises in the evening but no cardio. It seems like RLS has something to do with circulation and it is hereditary. My mother has it, I have it and my daughter has it. Good luck in your search, if you find anything that helps other then medication please let us know.

5

Good Morning. Thanks for all the suggestions, med references, etc. I have done everything from hot/cold baths, compresses, etc. OTC meds/supplements, etc. The only thing I can't do is write my own prescriptions. My only hope is a new medicine from my doctor or having to just accept it. I am so tired physically because I get little sleep and my RLS is from the moment I open my eyes till sleeping. Daytime RLS isn't horrible because I am up and about and the walking distracts the "feelings." The RLS just gets worse to horrible from late afternoon and then onto the night.

I have had all the necessary bloodwork done to check magnesium levels, iron level, etc. All just fine.

I came across an interesting article the other day stating that a person's iron level can be normal but it's the iron level in the brain that can be deficient and not show up on BW. There are 7 pages of the RLS article. Below information is on PAGE 4. Here is the link:

http://www.m.webmd.com/sleep-disorders/features/night-walker-restless-legs-syndrome?page=4

************************************************************************************

Restless Legs Syndrome: What Causes It?

Experts aren't sure what causes restless legs syndrome. According to James Connor, PhD, distinguished professor and vice chairman in the Department of Neurosurgery at Penn State University, however, new research shows that iron plays a key role.

Magnetic resonance imaging (MRI) scans and brain tissue studies from deceased restless legs syndrome patients demonstrate reduced amounts of iron in their brains compared with non-RLS patients' brains. This occurs even when the level of iron in the blood is okay.

"Many people with restless legs syndrome are 'brain-iron-deficient,' even if their whole-body iron levels are normal," says Connor.

Researchers also know that dopamine is a key player in restless legs syndrome. Dopamine, a neurotransmitter, relays messages between nerve cells in the brain.

In those with RLS, "there appears to be compromised uptake of iron into the [nerve] cells in the brain that make dopamine," says Connor. This could lead to decreased function of these nerve cells, including the ability to make dopamine, he adds.

6

I developed RLS after my surgery and just like others who have responded mirapex is a fantastic drug to help with it. They now have an arm patch my neuro said (not sure if its the same) but that’s another thing to look into if interested

7

I definitely am going to ask about the Mirapex, assuming it is okay to take with all the other medicines I have.

The patch you are referring to I think is Neurpro.

If so, here is the link:

http://www.neupro.com/restless-legs-syndrome/neupro-patch.aspx

8

Yeah that’s it. Mirapex has been great with all my meds. It has very little interactions and minimal side effects

9

I know this sounds crazy but this works for me. Mustard! Yellow mustard, not like a little on your sandwich but take 1-2 Tablespoons and see if it helps.

10

Crazy or not, I would try anything, especially natural rather than a med. Do you take it everyday?

I just googled it and it is recommended for leg cramps also. Thank you for the suggestion.

11

I take a big spoonful of mustard as soon as I feel RLS coming on, not everyday.

12

Good Morning.

Just a quick followup on my visit with my neurologist for the RLS. I told her the Gabapentin was not working and she put me on the Mirapex without my having to ask for it.

So its now been 5 days and the RLS is still there but not as strong. She started me out on one .125 at bedtime and said to go to 2 if it is not working.

I will wait till the end of my 2nd week before I up the dosage. Everyone's system is different and I am not sure how long it takes to start working in my body. I will post back when the RLS is gone.

(it does go away I hope???)

I thank you all for your advice and all the information here on all types of problems has always been so correct.

By the way, the mustard didn't work for me but on the internet is did state it is used a lot by runners for leg cramps. I did try though, lol.

Have a great weekend everyone and ~ BLESSINGS TO EVERYONE ~