Restless legs - linked to heart disease?

Thank you Ron,

I have avoided acohol and caffeine for several years now, and chose to clean up my diet significantly in order to recover from the ME.

I have tried to solve my restless legs the natural way, without drugs.. But have sadly been failing.

Currently I,

Exercise regularly but not too aggressively (yoga & light jogs)

Take Iron and magnesium supplements

Eat only natural organic foods, and only white meat or fish.

No processed food, keep sugar and salt low.

Avoid alcohol caffeine smoking etc

Drink only bottled water

Avoid parabends, I don't use deodorant and only use natural organic products on my body

Unfortunately it looks as though the route of trying drugs is now my only option. Ropinirole seems to have worked for a lot of people, another that came highly recommend was Miriplex (pramiplexol) - have you tried this?

Thank you once again for your advice.

Pramiplexol is similar. The latest is neupro which is a patch. Lyrica is worth trying first or Horizant if you can get it. Lyrica did nothing for me.

Just this morning I found "The use of gabapentin should be reserved for cases with a neuropathic component. There has been recent clinical and experimental evidence supporting the possibility of a beneficial effect of L-acetyl-carnitine"" in a medical paper by members of the Unversity of Cantania. I'll give the web reference to it in a post below so the information in this post is not held up for moderation.

"Restless Leg Syndrome" G.F. Ingrassia” Department, Neurosciences Unit, University of Catania, Azienda Policlinico Vittorio Emanuele, Department of Medical and Pediatric Sciences, Department of Biological Chemistry, Medical Chemistry and Molecular Biology, University of Catania.

http://www.actamedicamediterranea.com/medica/2012/med2012_pag-153-155.pdf

Hi Cass, as Robert indicated the RLS brain is a poor manager of iron. Parts of our brain are literally anemic it seems while other parts, the mitochondria are hogs. Scientists have literally seen all this by autopsing the brains of people who seemingly had RLS during their lifetime and by PET scan of living RLS patients. I know you're taking iron but if you're like me (and I think we are all very much alike) then you have to take a very broken down form of iron called iron bisglycinate and you have to take it on an empty stomach during an attack or right before bed. The iron has to cross the blood brain barrier at the right time in order to work. Provides relief for six to eight hours and has to be repeated with each attack. So tonight I stupidly drank diet pop and developed restless body. I had to wait hours for my stomach to empty and now as I'm typing this my RLS is melting away. It was so bad a few hours ago and I was so tired but if I sat down I would have to make convulsive movements in order to relieve that bizarre urge to move. By the way the reason the iron works is because we with RLS have a very pathetic dopamine transport system likely due to that lack of brain iron reserve. Amazingly enough by day we're ok and that's because our blood levels of free floating iron is relatively high and our dopamine transport system hums along but at night those levels drop. Less iron means less dopamine released into our central nervous system where it quiets our arms and legs. Stay away from melatonin antacids and antihistamines.

Thank you Udon, I will go out and look for the iron today! I would be ever so greatful for any amount of relief. Unfortunately my restless legs has decided it can attack me in the day time now too.

Thank you Udon, I will go out and look for the iron today! I would be ever so greatful for any amount of relief. Unfortunately my restless legs has decided it can attack me in the day time now too.

Howdy.  Yes, some old and some new articles indicate that acetyl-l-carnitine influence release of dopamine in brain.  So it's a DA, like potassium and possibly magnesium.  Speaking of magnesium, I just took two magnesium threonate capsules to see if they will help the RLS I have right now.  I will give it an hour then run for the iron.  It would be nice to find an alternative to iron.  Magnesium, carnitine, potassium all have health benefits beyond RLS so those seem preferable.  But nothing seems to work like the iron.  Nothing stranger than real life.  I recently read about someone who never had RLS in her life but got it after she stopped supplementing with magnesium.  I found this so fascinating that I went on to see if anyone else had this happen.  I found yet another person who was taking a supplement called zam I believe which was zinc, magnesium and something else and developed RLS either during or after taking supplement even though she never had it in her life.  She was quite upset and someone else on the forum (not an RLS forum) assured her it would pass.  She said that after she stopped taking Neurontin she too developed RLS but that after a month it went away.  She said the same thing happened to her mother.  Neither her or her mother were taking the neurontin/gabapentin for RLS.  As a matter of fact they never had RLS in their lives.  I think what's happening here is we're seeing people who are pre-disposed to RLS and who take these substances that basically beat a little more dopamine out of those receptors and end up making their receptors temporarily bad in the process.  After a long enough time off of these substances their dopamine receptors return to baseline.  And for them, baseline dopamine receptors are good enough so that they don't get symptoms of RLS.  I will post a few articles like you did. 

http://www.sciencedirect.com/science/article/pii/001429999290154V

Robert below is the conversation.  I deleted alot in the hopes it wouldn't be moderated and you could see what I was talking about.

Hi I was taking one ZMA at night before bed for a few weeks and then haven't for a few nights because i thought it was keeping me awake. All of a sudden last night and tonight, in the evening (not sleep time) i have the worst Restless leg syndrome.Anyone think this could be why? Does it just come and go? I've never really had it like this before!! it's making me nuts just sitting here.dana

I'm not sure what ZMA is but I have RLS. So I know how you feel. Hope you get some answers. Take Care, Cheri

I have been taking the ZMA for 17 months now, and it stopped the RLS completely. I could not imagine that it could cause RLS

If you think its keeping you awake (it helps me to get to stage four sleep) then take it earlier in the evening.The magnesium in ZMA should help calm you down, not make your legs jump. Its a natural tranquilzer.

thanks what i meant is i was taking it and didn't have RLS and now i stopped and have it suddenly, so i'm wondering if stopping it caused it or let it come back?

I was taking neurontin for a while, and when I dosed off I had RLS for a while. I had never had RLS before. My mom had the same thing happen when she was on neurontin and went off. It went away for both of us. Not to worry, should only be a month or so.

 

RLS gone within 45 minutes of taking two magnesium threonates.  Proves NOTHING.  Will keep repeating to see if it truly is the mag that's working.  Bedtime

In addition to Melatonin, 5htp can MAYBE be bad, very bad for RLS.  5htp increases serotonin in brain just like antidepressants.  The serotonin competes with dopamine.  We don't want anything competing with our brain's already pathetic transmission of dopamine.

As I've said before Udon, you seem to have a particular form of RLS which responds well to iron even though your iron stores as measured by blood tests are high enough. I'm still taking 90 mg of iron (Ferrochel) every night, but onset of my RLS is currently as early as 2 p.m., although it's still the case that the extra iron does seem to have stopped the shuddering I used to get. We really do need to get all this together. I feel I'm starting to get a little short of knowing what the world's medical research establishments are currently doing in regard to RLS.

Thanks for the link Udon.

I've got 500g of Acetyl-L-Carnitine powder on order, to arrive today or tomorrow. See how it goes over the next few months!

Hi Udon, this is interesting because I have often pondered on the thought that I may have been taking too many vitamin supplements during my life. Especially the couple of years prior to the RLS I had been taking a multivitamin, magnesium, B complex. Maybe this was harmful?

The worrying thought for me is that my RLS started a year ago and every night become increasingly worse. Even when I think it can't get worse, it does! I'm 29, I feel as though I have no quality of life, I'm an absolute mess.

Dont throw the baby out with the dirty bath water.  Vitamins are probably fine it's 5HTP, melatonin and tryptophan that we, who are pre-disposed to RLS, need to avoid.  Melatonin gave me wicked restless body and I didn't make the connection for years. 

lol Udon thank you for making me laugh. I will continue the vitamins.