Do you have difficulty sleeping at night because your legs twitch, tingle, ache, or actually feel like they are having a seizure? Regardless of what anyone who doesn't have RLS (restless legs syndrome) might tell you, it is not in your head - and you are not alone!

According to the Restless Legs Foundation website (http://www.rls.org/), about 10% of people in the US struggle with RLS.

I am not a doctor, nor have any medical education (other than becoming something of a medical researcher in trying to combat my RLS). The reason I am writing this, a synopsis of my journey and experiences battling my RLS, is to provide information that may eventually help others who are plagued by this painful condition.

I first experienced difficulty with RLS when I was in High School. I remember several times when my legs would feel like they were trying to run while I was laying in bed attempting to sleep. I couldn't bear to just lay there and suffer, so I got up and ran around the block as fast as I could. Afterward, getting back into bed, it seemed that I exhausted the energy that was built up in my legs and was able to sleep.

Later in life my legs seemed to need more exercise, and I began doing skiers squats and toe lifts until my legs were exhausted. This did the trick for a while. I soon found that taking three Advil and two Tylenol about an hour before bed also kept my RLS at bay. I tried to ignore the fact that I was putting my liver under strain by taking the medications.

About five years ago, I was diagnosed with Inattentive ADD (not the hyperactive ADHD) and was put on Adderall XR. This changed my life by being able to focus on work, etc., and improved my social interactions as well. About two years later my difficulties with RLS increased dramatically. I heard of a "new" drug for RLS called Requip and went on that. Requip, while it made me tired and kind of "stony" after I took it, was a lifesaver! I was able to lay in bed and actually go to sleep, instead of more frequently painful urges to move my legs.

After being on Requip for about a year or so, I began experiencing "near-syncope" episodes where I thought I was going to pass out, had difficulty breathing, was sweating profusely, and actually turned grey in color. My wife actually thought I was dying (as did I) during the first, and the worst of these episodes, and called the paramedics. I had just gotten a physical a few months before, normal results, and the paramedics could find nothing wrong with me. I was feeling better, decided not to take the expensive ride to the hospital, and went to my doctor the very next day. The doctor could find no explanation for the incident. I chalked it up to stress, and thought I was experiencing "Tony Soprano" panic attacks.

I have to add here that because I was concerned about all the medications I was taking, I started doing a lot of research on the medications and reading about experiences others were having with the same. I have a bachelor of science degree (in business), and having taken several analysis and research courses as a part of that program, have turned into something of a research fanatic. As with any research that I conduct, I always take everything found on the Internet with a grain of salt, and I always seek the most reliable sources when compiling information on any subject.

Not having received help from traditional western medicine, I decided to seek help from a naturopath. It is interesting to note that the naturopath determined that I might have a wheat allergy. Instead of paying the $300.00, or so, for an actual test to confirm a wheat allergy, I went off nearly all wheat products for about two weeks. I went to dinner with some friends, after about two weeks of wheat abstinence, and decided to indulge in a hamburger. I felt horrible not long after ingesting the wheat from the hamburger bun. My sinuses swelled, much like a seasonal allergy attack, and I became incredibly irritable. I literally had to excuse myself for a nap and some self imposed isolation, and felt better a few hours later.

Having given up wheat I was able to stop taking two allergy medications, Claritin and Flonase, as well the Nexium I had been taking for an acid reflux disorder that was persistent for about 5 years. I also stopped taking Requip. This was all an incredible change of events! Per my naturopath's instructions, I beefed up on Calcium Citrate, Magnesium Citrate (both of which are identified as being beneficial for combating RLS), among some other supplements to help boost my immune/adrenal systems during my detoxification from the drugs I had been taking. Not long after this I felt better than I had in a long time. By the way, I was drinking a teaspoon of sodium bicarbonate/baking soda in water (followed by a large glass of clear water) when I stopped the acid reflux meds, because the glands that pump acids into the stomach are trying to overcompensate for the suppressing medications - the sodium bicarb neutralizes the acid (don't do this an hour or so before or after eating or you won't be able to digest your food). Nearly drug free for the first time in years!!

Now back to the dopamine issue related to my Inattentive ADD (I prefer not to use the more common reference to ADHD because there was no hyperactivity involved). My restless legs were still giving me difficulties during the previous time-frame, and I was resorting to sodium bicarb foot baths before bed, rubbing my legs with Aspercreme, taking Melatonin, and drinking Kava-Kava extract as well as taking sodium bicarb(as previously described). Sometimes I would be able to sleep soundly, but often I was up until 2 in the morning. I decided to get a sleep study done, the results showing that my RLS was pulling me out of REM sleep about every 20 minutes from 10pm to 2/3am. The doctor prescribed Clonazepam, and asked if I had seen a Neurologist. No offense, but the thought of becoming addicted to an opiate was frightening.

I have seen a lot of research on the effects of stimulants, including caffeine, etc. that caused me to remove Adderall from my system. I got a lot of advise to just go "cold turkey", but found a lot of people saying this was a very painful experience. I looked up my psychiatrist, who told me to back down the dosage and supplement with Focalin (a new takeoff from Ritalin). Even though I was taking the Focalin, I was really sick for about a week or so during my detox from the Adderall. My RLS improved! I was now getting that sweet precious sleep which had been evading me and leaving me feel like the walking dead.

While the RLS improved with the previous changes, I was still feeling my legs periodically and decided to take the dreadedQuinine that had been banned by the FDA. I discovered Quinine on the rls.org bulletin boards and tried drinking a quart or two of tonic water per day. The stuff tasted nasty to me, and only made me get up to go to the bathroom. Apparently I wasn't able to ingest enough Quinine for therapeutic benefit. A friend told me about a website (freedom-pharmacy.com) where I could get the pill form. After reading that the FDA pulled Quinine because people were overdosing on it, I found that small quantities (under 1 gram) were considered safe. I now take 400mg per night. This is giving me the relief that I have sought!

Please be safe! I reiterate that I am not a doctor, and in no way could I take responsibility for someone getting sick or dying from this information. This is only my experience, and I am sharing it because I was finding a great lack of help from doctors for my RLS condition (in fact there are a lot of people who think this is a mental disorder and that there is really no such thing as RLS).

Oh, dopamine. Did you know that the Mayo Clinic Algorithm for RLS recommends playing video games during an RLS attack? Video gaming depletes dopamine in the brain. The algorithm is here: http://www.mayoclinicproceedings.com/pdf/7907/7907Crc.pdf

So I've had to take stimulants to receive more dopamine, and an agonist to keep the dopamine in my brain longer. Is there something wrong here?

I found it interesting that Requip was originally marketed as a Parkinson's drug, testing found that people with Parkinson's and RLS were having fewer RLS symptoms hence the target to people with RLS.

I should also note that my father was diagnosed with stage 2 Parkinson's recently, leading me to wonder if I am predisposed to that disease as well.

Everything I have found has lead to more questions...

I would love to know what others are experiencing, or what they are finding.

Here are some of the links I have found beneficial:

http://bb.rls.org/

http://www.ninds.nih.gov/disorders/restless_legs/detail_restless_legs.htm

http://www.sleepfoundation.org/site/c.huIXKjM0IxF/b.2417141/k.2E30/The_National_Sleep_Foundation.htm

http://www.wemove.org/rls/rls.html

http://www.rls.org/NETCOMMUNITY/Page.aspx?&pid=471&srcid=572

http://www.aasmnet.org/