Just because the medical community hasn't found a way, doesn't mean that's the end of it. There's a saying someone recently said to me, not sure whose quote: I believe there's a solution, I just haven't imagined it yet. There was a time when I did not have RLS of any kind. If I go back in my mind and my medical treatments, I know it started about 10 years ago, it may have been when I first complained about not sleeping well to a doctor– A chronic problem since I was a child–in that dock there're a doctor prescribed Clinton is a pan. When I told my present PCP, she said clonazepam makes you crazy come on let's get you off it. Only later did she prescribed a load dose.5 of Requip. But like all meds the need for Increasing. I'm beginning to think this head a medication start. Any ideas about that other people have experienced similar?
I don't believe this condition is not... - Restless Legs Syn...
I don't believe this condition is not curable.
I think your predictive text has gone a bit haywire- but it seems like you're getting augmentation or taking trigger substances.
Search both in the drop down box above.
Good luck.
Clinton is many things but I don't think shes a pan!! The clonazepam is a benzo and for me I wouldn't be my first choice, might help with the lower end of the spectrum but I don't see how it would help, other than alleviate some of the distress of a severe attack
RLS is a neurological condition and starts in the brain so maybe that's were the head bit comes in!! And PCP that's a bit of a serious drug to be using!!! 
Need a bit of clarity in the post and I agree this condition is curable its just not been found yet, or if it has big pharma is holding on to it to milk us with the opioids and dopamine drugs
Sorry, raffs and madleggs 1, I was dictating my post. PCP is of course my primary care physician, and it was she who said clonazepam or clonazepan (sp?) will make someone forgetfull and a little disoriented. Crazy—my bad word choice.
And I'm beginning to wonder if this feeling beginning in my stomach is really RLS? If not, then what could it be? I have been tested by my neurologist for every possible sort of brain misfire, interruption, seizure possibility, etc. Nothing was found out of the ordinary. Frustrating, and searching for answers.
I posted on another thread that it sounded a bit like a panic attack or anxiety. Are there feelings of fear, racing pulse, sweating? That would be in keeping with the drug you were prescribed.
Hi Raffs,
No it's not a panic attack or anxiety. I've had those in my younger years. I'm in my 60's now. I was a counselor and worked with clients to help them relieve and cope w/stress. No fear. It comes on when I am over tired. I have my doc check my ferritin levels every 6 months. My iron stores are excellent. I am on 325 mgs 2x/day of iron to keep them at that level.
LOTS of meds used for RLS have those qualities, There are NO tests for RLS, so your neuro has been ruling things out. I can save you some frustration. Have you had your Ferritin levels checked yet? Not iron serum, but ferritin level, which shows you how your body stores iron. in RLS the dopamine transport system is messed up, but we have enough of that, it just does not cross the blood/brain barrier. Iron is the "transportation agent" for dopamine up thru your spinal canal. That is the ONE test that can be done, to see if your ferritin is too low. "normal" for people without RLS is 12-15. For people with RLS, they would like the number to be at least 70 now, better to get it to 100. having said this, when they do figure out how to fix the transport system to our brains, then we will be all set. BUT, they ARE studying this at Johns Hopkins in the USA. We have to find something that works for US, and it can be all trial and error. 10 years is not that long to have RLS in the bigger picture. Did anything change 10 years ago that could have set off your RLS? Spinal surgery or injury, different meds for different conditions can set your RLS off. Also the MAX recommended therapeutic dose for requip is 2 mgs, preferably less, so do not increase it too much, or you will get into another whole issue called augmentation.
If you have all of the criteria for RLS. then it is RLS. Always have to hope there will be a cure. RLS is complicated i think most of us have tried to work it out over the years and still doing so. This link has the criteria for RLS. irlssg.org/diagnostic-crite...
I just posted about this - how people can take certain drugs (such as Neurontin and your case Requip) for other conditions (in your case insomnia) but then develop RLS while taking the drug or stopping it. So in your case, I completely agree that your predisposition to RLS can go completely quiet, as it was before, after you've been off the Requip for a while. Put "Amazing, bisglycinate, RLS" in the above search box and read about how to take ferrous bisglycinate. Like the rest of us you probably have an "inferior" dopamine transport system (and that my have contributed to your insomnia since childhood). For most of your life that dopamine transport system was good enough such that you never developed that irresistible urge to move. Along comes Requip and now you are further down-regulating your genetically down-regulated dopamine transport system. Scientists have concluded that we have inferior dopamine transport because of BRAIN iron mismanagement. I believe that's why many people, including myself, get relief from RLS by taking one 25mg capsule of ferrous bisglycinate on an empty stomach and before bed.
Need your help asap, please. Do I discontinue my regular iron supplements in lieu of Your advice in the bisglycinate iron? Your previous post yesterday felt just right. I spoke with my pharmacist who is very familiar w/ my meds. She will work w/ my GP to begin next week titrating me off the Ropinerole. Meanwhile, I went out last night and got the bisglycinate iron supplement you suggested. Pharmacist thought that was a good idea. My question to you oolong is: I have been taking (2) 325 mgs./day of iron sulfate. If I take (1) 28 mg. bisglycinate iron /day do I discontinue my 325 mg. iron supplement meds. starting today?
I don't want to be taking too much iron as it can be toxic. What do you suggest?
DON'T TAKE BOTH, that would be too much, use 25mg of the Bisglycinate in evening on empty stomach.
Yes discontinue your old iron which is hard to absorb from GI tract. Plus the latest news from researchers indicates that with that first iron capsule of the day our bodies release a substance called hepcidin which prevents much of any iron getting into our blood with that second pill of the day. The hepcidin will hang around for 24 hours. So yes, take one (or two) capsules of the bisglycinate before bed on an empty stomach. If you still have RLS then take a little Ropinerole. In other words, try not to take that last Ropinerole of the day as you slowly taper down. You're going to be fine, really. Not just saying that. Your dopamine receptors will slowly get back to homeostasis once you stop the ropinerole and the iron will help get you through it.
Also, there are a lot of substances that can make RLS worse such as sugar substitutes (avoid all accept Stevia) melatonin, 5htp, and a whole list of heart and allergy medications are known to make RLS worse. Anti-depressants as well are best to avoid.
Research (non RLS) has shown that calorie restriction (1000 calories for women) will increase the number and density of dopamine receptors over time. Or juice fasting one or two days a week. Initially I would imagine a person doing this would feel worse because food can be a drug and cause a release of dopamine. As you restrict calories and even go hungry your dopamine receptors will allegedly up-regulate. It's not a matter of losing weight, it's a matter of calorie restriction.
Avoid hormone replacement as well. Just read another poster who's RLS disappeared when she discontinued HRT.
Again, another broad general statement. One cannot say "avoid HRT" because for some women it is essential. All things like this have to be done an individual basis.
And just because the medical community cannot cure parkinson's many forms of cancer, etc, does not mean there might not be a cure that is discovered. As of NOW, there is no cure for RLS, only treatments. 20 years ago, I also refused to believe there was no cure, but I deal with RLS researchers and experts, and RLS mentors in the field, plus over 6,000 people in many groups, PLUS this community, and so far we are not close to a cure, but many things CAN treat it, it is just finding what helps you the most.
We also told you on other posts, since you did tell us that you are taking 12 mgs of Requip, the reason you are suffering so much. You are on 5 times the daily recommended therapeutic dose of that medication, and it WILL turn on you when you take to high of a dose. You really need to read about augmentation. That literally means worsening of something, and in the context of RLS, it means worsening of RLS. 2 mgs is the highest recommended dose of that med, and it would serve you well, to read about it. See the RLS-UK web site for lots of good information.
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