Restless Legs Syndrome (RLS) Discussion Board

I heard from someone who was in contact with Dr. B. recently that he said there is now some research (unfortunately he didn’t give details) to suggest that people who have augmented on a d/a are less likely to respond well to the anti-convulsants. That seems to suggest that augmentation has some sort of permanent or semi-permanent impact. By coincidence, Julie who takes Kratom (can’t remember her exact username) posted very recently that she has noticed that Kratom seems to be less effective for people who have augmented -an observation based purely on anecdotal evidence of course but still ...

Sorry Oooz didn't see your post til now
but it's as Ann said: The literature said you would go back to your old level of symptoms once the augmentation and withdrawal wore off, but a number of us were convinced that was not the case, that in fact there was a long-term or perhaps permanent worsening.

I am only now seeing possible evidence that the long-term worsening was not permanent, and is in fact slowly wearing off. almost 10 years after augmenting.

And true, not only Dr B but Drs Early and Allen at Johns Hopkins have said informally (I think in one of the webinars) that augmentation causes long-term damage and DAs should perhaps be avoided.

However, the clearest truth of all is that everyone reacts differently to this stuff so you cannot predict that your symptoms will be worse for 10 years just because mine and Ann's were. There are others who went back to baseline without any worsening. So it's different for everyone. ALso - you've only used DAs intermittently.

Badnights, this is EXACTLY my experience with DA's. I was trying to ask this question in another post, but wasn't articulating it well. I'm relieved to hear others have noticed it. I, too, have heard their is evidence to support this, but have yet to see it.
This likely explains why 1800 mgs of gabapentin did nothing... but going back to 1/3 of my DA took care of my symptoms. Diabolical. Symptoms worsen to such a degree that one has to use at least some of it. Sounds like a drug manufacturer's dream

I have both RLS and Parkinson ’s disease. I try to eat a healthy diet and cut down on carbs. My problem is that eating protein reduces the absorption of my Sinemet (dopamine). Because of my current schedule it is not always possible to avoid taking Sinemet around meal time, so I end up eating carbs, as vegetables don’t really fill me up. I’m struggling to find a better balance, as I know protein is important.

I also have a question about oral Iron supplements. My PC says to take iron every other day for maximum absorption. I have not seen this recommendation anywhere else. Does anyone know anything about this?

suttmes69xx ----- I note you take Sinemet, just be aware that Sinemet is a drug that is very often the cause of augmentation in RLS especially if taken on a regular basis.
Augmentation is a phenomenon in which the medication leads to a worsening of symptoms beyond the level of severity that was experienced when the medication was first given. During augmentation, patients may experience an earlier onset of night time symptoms, more severe symptoms, the onset of day time symptoms and a declining response to the drug, requiring higher and higher doses.

I also have a question about oral Iron supplements. My PC says to take iron every other day for maximum absorption. I have not seen this recommendation anywhere else. Does anyone know anything about this?

The topic of one of the Foundation's webinars was iron and RLS. I believe that a comment was made that somewhat reflected your doctor's statement about greater adsorption on an every other day schedule. However, I believe that this was followed by a comment that the difference wasn't that great and that it was more important that the iron be taken between meals and with vitamin C, which helps improve adsorption.

Thanks for the replies. I am aware of the augmentation issues related to Sinemt. Unfortunately, I need to take Sinemt in order to function, so have no choice in the matter.

I did listen to the Webinar on iron and RLS, but just didn't remember the comment about taking the iron every other day. I do take it with vitamin C, although I have read that one does not need to take vitamin c with iron bisglycinate.

You are correct that you do not need vitamin C if you are taking iron bisglycinate. The iron needs to be tied up with either bisglycinate, ascorbate (vitamin C) or citrate (orange juice). If it doesn't have one of these 3 to keep it dissolved in the intestines, most of it doesn't get adsorbed into the bloodstream and just comes out the other end.

… oral Iron supplements. My PC says to take iron every other day for maximum absorption.

My GP also suggested taking iron every second day. After two weeks of torture I went back to every day. It was worth a try but didn't work for me. Iron tablets have really helped me though.

Conversely, I feel that taking iron every second day has helped increase my levels more consistently than taking it every day. It is difficult to tell for sure however.

Taking iron every second day is sort of an extended version of the advice to take your entire daily dose all at once, not spread out over the day. The advice is given because iron isn't absorbed unless your blood levels are low, which they won't be if you've taken iron recently. The second-day theory assumes your iron levels will be significantly lower and the iron will therefore be better absorbed.

I did switch to taking my iron all at once when I heard this advice. I tried taking it every second day, and within a few weeks I had worse symptoms. It took me a while to tie it to my iron-every-second-day experiment, but it was so obvious when I finally realized it. It was the same thing that happens when I lower my daily dose of iron from 3 tablets to two. Once I started taking iron daily again, the symptoms improved to where they had been (after a few weeks). So - it was a costly experiment: I paid about 6 weeks of quality time to find out I should take iron every day.

But I'm good with the once-a-day plan, vs. twice a day or three times as a I was doing at one point. I can't say if it has improved my symptoms or not; if it has, the effect was too subtle for me to be sure.

Belsheart wrote:This likely explains why 1800 mgs of gabapentin did nothing... but going back to 1/3 of my DA took care of my symptoms. Diabolical. Symptoms worsen to such a degree that one has to use at least some of it. Sounds like a drug manufacturer's dream

Yes, that's probably the explanation! But there are other solutions than going back to the DA (which is diabolical). The proper response of a doctor would be to try you on an opioid, I would think, since the gabapentin didn't work. (Regardless of the "war on drugs", which is a marketing exercice.) But it's hard to get doctors who understand this and who are willing to prescribe opioids (thanks to the "war"). Have you broached the subject with your doctor? Does you doctor know much about refractory WED/RLS?

If you do try an opioid, you can combine it with Lyrica or Horizant (possikbly more effective than gabapentin) to keep the dose slightly lower and to help with the sleep disruption it might cause; and you could even keep the DA, at an even lower than now. If you can't try an opiod, you would still benefit from adding one of the other alpha-2-delta anti-convulsants if it let you lower your DA dose even a bit.

I hope you're on top of your iron situation?

Badnights, I'm a little confused. If iron isn't absorbed unless your blood levels are low, how does taking iron everey day help?

suttmes69xx, the iron levels in your blood do not need to be low for the iron to be adsorbed. That is why it is important to take iron supplements while under a doctor's care because too much iron can result in organ damage. Only a small amount of the iron that you take actually gets adsorbed. What does get into the blood first goes to making red blood cells (the measure of anemia) and then old red cells are scavenged of the iron to form an iron protein (ferritin) that is used as an iron source for the rest of the body, including the brain.

So, taking iron every day provides the trickle of extra iron that we need to build up our ferritin levels. It is only when the ferritin level gets too high that taking it daily is not advisable.

Thanks so much for clarifying that, Rustsmith. I wonder why my PC insists that the best way to absorb the most iron is to take it every other day. Are their different expert opinions on this?