Dealing with Restless Leg Syndrome

Dealing with Restless Leg Syndrome

I woke up early in the morning on February 22, 2001, too early to get up, so I rolled over on my side and curled my legs up to try to fall back asleep. But just as I was falling asleep, both legs just kicked out on their own and woke me up. I shook my head wondering what happened and curled up again. But as I was again falling asleep, one leg kicked out. I tried again, and this time the other leg kicked out. Now I was getting worried as I didn’t know what had happened.

I rolled over on my back to try again. I figured my legs couldn’t “kick” if they were straight. But this time my arm jerked up into the air. Now I was getting really worried. But I tried again, and now one of my hands flipped up. Then my fingers would snap out own their own. Now I was really worried. I had heard of restless leg syndrome, but all of my limbs were jerking.

That night when I went to bed the same scenario repeated itself. I barely slept at all the entire night. The same was true for every night for the next week. After a week of hardly any sleep, my resistance was probably very depleted, and I came down with the flu. I had the flu back in the fall, but I got over it in a couple of days. This time, I only had about a 99 degree temperate. But after not sleeping hardly at all the first night I was sick, I got up the next day with a 101-degree temperature. And it stayed between 100 and 101 degrees for over a week. Without hardly any sleep, my body simply wasn’t able to fight the virus very well.

Previous Neurological Condition

Now I should mention that I have a neurological condition that causes what are called “tics.” These are minor muscle movements that can occur anywhere in my body. They are barely noticeable to others, but to me they feel like someone is pinching me. When they occur they can last anywhere from a few seconds to a few days. And when they do last for extended periods, it can make sleep almost impossible.

I used to take a couple different anti-convulsive medications for this condition. But a couple of years previously I had begun really watching my diet, eating basically no “junk foods,” lots of fruits, vegetables, nuts, seeds, whole grains, legumes, and lean animal foods. And by following this diet, my neurological condition seemed to improve, and I could get by with less medication. I also started experimenting with various supplements. The ones that seemed to help were calcium, magnesium, and B complex supplements. And I was doing fine for quite some time.

But then the drug manufacturer changed the form of one of my prescriptions I had been taking 300 mg capsules of Neurotin six times a day. But the prescription was changed to 600 mg tablets to be taken three times a day. The total amount was still the same, but with the change my condition worsened considerably.

With anti-convulsive drugs you simply cannot go off of them all at once. Doing so could bring on convulsions in someone who doesn’t even have a neurological problem. As such, I can only assume my body was not able to absorb this new form as well as the old, so to my body it was probably like I had just reduced the amount all at once.

My neurologist then gave me a new drug, but it didn’t helped. Since I was fed up with drug companies and the side effects of the drugs anyways at this point, I decided to try going without the drugs. Therefore, I gradually weaned myself off of all them. And now, as long as I continue to carefully watch my diet and take the above-mentioned supplements, I seem to be doing as well without the drugs as I did with them. For further information on my ideas on diet, see my book Creationist Diet: Second Edition.

Visit to Neurologist

Since my neurological condition is somewhat related to Tourettes Syndrome, and since Tourettes does cause limbs to jerk uncontrollably, I assumed the jerking limbs were related to it. Thus when I finally got over the flu, I called my neurologist. He immediately identified my symptoms as restless leg syndrome (RLS). This surprised me, since, as indicated, the problems wasn’t just in my legs. But he explained that the syndrome could affect all of the limbs, not just the legs.

He explained that there are two main causes for RLS. The first is low iron levels, so he had me get a comprehensive blood test that tested for several different iron related factors. It would have been rather ironic if it had turned out that I was low in iron as several years before I had started avoiding foods with iron added to them, most notably breakfast cereals. I did so as it seemed that when I ate iron-fortified cereals regularly I would develop diarrhea. I also read that excessive iron can increase the risk of heart attacks. However, I was actually disappointed by the normal iron levels as low levels would have been easy to correct. But more importantly, the second potential cause of RLS is rather scary.

Low Dopamine Levels

The second possible cause of restless leg syndrome is low dopamine levels. Low dopamine levels are also the main cause of Parkinson’s disease. My paternal grandmother died of Parkinson’s, so this information was scary. But my neurologist said it is not know whether someone with RLS is more likely to develop Parkinson’s or not. But still, the possibility is scary.

The main treatment for Parkinson’s is the drug L Dopa. This drug directly causes the body to produce more dopamine. But my neurologist prescribed Mirapex® for me. He explained that this drug provides what is needed for an intermediate step in creating dopamine in the body (at least that’s how I understood it).

I took the Mirapex that night. I did sleep, but the next day I felt horrid. I was drowsy, listless, and depressed. Later I went to my family doctor, and he prescribed trazodone. This drug was not for the RLS per se but simply to help me sleep despite it. I tried it once, but it had the same side effects as the Mirapex. Therefore, there was no way I was about to take either of these drugs regularly.

I then logged on the ‘Net to see what other options there were. Typing in “restless leg syndrome” in a search engine brought up a whole list of sights devoted to this condition. And the sites did confirm what my neurologist had told me: the main causes were low iron and low dopamine levels. And drugs like L Dopa and Mirapex were the main ones mentioned. But also mentioned were the myriad of side effects these drugs can cause, so there really was no way I was going to take them.

But also mentioned on some sites was that even with normal iron levels, sometimes iron supplements would still help, so I started buying a limited amount of iron-fortified cereals. And eating a bowl every few days did seem to help a little. But I didn’t want to take in more iron than that for the reasons mentioned above.

I then typed in “dopamine” in the search engine. I was hoping to find alternative ways to increase dopamine levels. What I ended up with was a long list of sites devoted to Parkinson’s. And most of these sites mentioned L Dopa as being the primary prescribed treatment.

However, I also came across an advertisement for the book Mind Boosters: A Guide to Natural Supplements That Enhance Your Mind, Memory, and Mood by Ray Sanhelian, M.D. This book claimed to provide natural ways of dealing with Parkinson’s, Alzheimer’s, and other brain related conditions. Since my maternal grandfather died of Alzheimer’s and, as indicated, my paternal grandmother died of Parkinson’s this book intrigued me.

But especially intriguing was the following quote from the ad:
A decline in dopamine activity in the brain is linked to cognitive (learning and memory) and movement problems in those with Parkinson's disease. In upcoming chapters, I will discuss how the amino acids phenylalanine and tyrosine, along with the nutrient NADH and some of the B vitamins, influence the production of dopamine.

I was already taking a B complex supplement. And the idea of taking individual amino acids has never made a lot so sense to me. Unless there is a specific absorption problem, adequate amounts of all of the amino acids can attained from one’s diet. But the NADH was something I hadn’t heard of before.

Scientific Research On NADH

Since I hadn’t heard of NADH, I wanted to find out more about it. I first looked it up in my MS Encarta® CD ROM and then I logged onto the ‘Net and did a search on “NADH.” The acronym stands for Nicotinamide Adenine Dinucleotide with Hydrogen. It is a co-enzyme, not a hormone like DHEA. It is involved in the Krebs cycle, which the means body use to produce ATP, the energy source for cells. The entire reaction is rather complicated, to say the least, but the important point is that every cell in the body uses NADH, so a deficiency of it would cause a variety of problems. It is for this reason that claims for the effects of supplemental NADH are rather varied.

The Natural Pharmacist website states that the principal proposed use for NADH is for jet lag. It then states, “Supplemental NADH has also been proposed as a treatment for Alzheimer's disease, chronic fatigue syndrome, depression, and Parkinson's disease. It has also been tried as an athletic performance enhancer” (NADH) As for safety, this site states, “NADH appears to be quite safe when taken at a dosage of 5 mg daily or less. However, formal safety studies have not been completed, and safety in young children, pregnant or nursing women, or those with severe liver or kidney disease has not been established” (NADH)

ImmuneSupport.com states similarly, “NADH (Enada), also known as Coenzyme 1, has shown great promise in helping to alleviate the symptoms of Parkinson's disease, Alzheimer's disease, depression, Chronic Fatigue Syndrome, and other diseases.”

And further:
NADH is a coenzyme found naturally in all living cells, and plays a key role in the energy production of cells, particularly in the brain and central nervous system. The more NADH a cell has, the more energy it can produce to perform its process efficiently. A growing body of scientific research shows that NADH stimulates the brain cells' production of the neurotransmitters dopamine, noradrenaline, and serotonin.

Thus this site claimed there is evidence that NADH increase dopamine levels. But I wanted to see for sure if there is any evidence that it actually did so, so I then went to PubMed. This website indexes abstracts for scientific studies for probably thousands of scientific journals. I did a search on “NADH AND dopamine.” The search results showed there have been some studies done using NADH as a treatment for Parkinson’s patients. The studies have shown mixed results. Some studies found a significant improvement of the functioning of Parkinson’s patients, while others did not.

For instance:
The reduced coenzyme nicotinamide adenine dinucleotide (NADH) has been used as medication in 885 parkinsonian patients in an open label trial. About half of the patients received NADH by intravenous infusion, the other part orally by capsules. In about 80% of the patients a beneficial clinical effect was observed: 19.3% of the patients showed a very good (30-50%) improvement of disability, 58.8% a moderate (10-30%) improvement. 21.8% did not respond to NADH.

And an interesting part of this study is, “The orally applied form of NADH yielded an overall improvement in the disability which was comparable to that of the parenterally [intravenous] applied form” (Acta Neurol Scand Suppl 1993;146:32-5; “Nicotinamide adenine dinucleotide (NADH)--a new therapeutic approach to Parkinson's disease. Comparison of oral and parenteral application. Birkmayer JG, Vrecko C, Volc D, Birkmayer W.).

Since Parkinson's is caused by low dopamine levels, it would seem possible that NADH can increase dopamine levels. And since low dopamine also causes RLS, it seemed it might work as a treatment. However, a search on “restless leg syndrome AND NADH” on PubMed turned up empty.

Details on NADH

The reason I wanted to research NADH as carefully as I could is, it is not cheap. The reason it is expensive is only one company produces it in supplemental form: ENADA®. The reason for this is it is patented. ENADA® was able to patent NADH as it was the first company to produce “the only stabilized, absorbable, oral form of NADH” (from ENADA’s Web site). But ENADA NADH is available under different brand names, such as Natrol and Source Naturals.

The problem is, NADH is a very unstable compound, so previous attempts to create a supplemental form were broken down in the digestive system. But ENADA figured out to stabilize it enough so that it was able to actually be absorbed into the bloodstream before being broken down.

This instability also leads to a rather unique way to take NADH. It must be taken on a completely empty stomach, with a full glass of water, and no food can be eaten for at least 30 minutes after taking it. Therefore, the recommended time to take it is first thing in the morning. It is also recommended that one does not lie down after taking it. The purpose of this pattern is to try to get the NADH to pass through the stomach into the small intestines as soon as possible and without being destroyed by stomach acid. But since I usually eat first thing in the morning, this would require a change of schedule for me.

NADH is sold in 2.5 and 5 mg dosages. The recommended amount is 5-20 mg. In the studies I looked at, 10 or more milligrams were generally used.

Personal Trial

There was some evidence that NADH did work to increase dopamine levels. And this might have a benefit on my RLS. But it was rather expensive and somewhat of a pain to take. But at least I didn’t see any mention of problems with side effects. And since I was still getting very little sleep due to my RLS, I decided to go ahead and try NADH.

I bought my first two boxes at GNC. It is one of the products they offer with their “buy one, get one at half price” deals. And I waited until the next “Gold Card Day” to save an additional 20%. I started with the smallest recommended dose: 5 mg. I was really hoping this level would help as if I needed to take more it could get real expensive. But as soon as I started taking it, I came down with the flu again. This time it only lasted a couple of days. But thereafter I was still feeling very fatigued. I had been feeling somewhat fatigued since my bout with the flu back in February, but now it was much worse.

NADH was supposed to help with fatigue, but mine was getting worse. But I wasn’t sure if it was due to the NADH or some leftover from the flu. Therefore, after taking the NADH for about three weeks I decided to stop taking it just in case it might actually be doing reverse of what it claimed to do: be causing rather than alleviating fatigue. But after a couple of weeks without it, I was still feeling fatigued, so I talked to my doctor about it. He said it probably was from having the flu and that it should clear up with time.

As suchy, I decided to start with the NADH again. And within a few days I began to notice a difference with my RLS. Gradually, my RLS seemed to be getting less severe, and I began to actually get some sleep. Now that I’ve almost finished both boxes I bought, my RLS is much improved. On most nights I don't have a problem, but there are still times when my limbs will jerk. But at least it's not every night. But I have noticed that the times I do have a problem are usually when my allergies are flaring up, so there might be a connection there as well. But the NADH has definitely made some difference.

My fatigue has improved some as well. But I’m not sure if that due to the NADH directly, due to simply getting some restful sleep, or due to getting over the lingering effects of the flu. As such, I can’t say if it would help with fatigue conditions like chronic fatigue syndrome.

Enada’s website recommends that if one wants to take 10 mg you can either take two tablets in the morning as prescribed above, or you can take one 5 mg tablet in the morning and one in the late afternoon, at least two hours and preferably four hours after eating but still at least 30 minutes before dinner. At one point I did try taking a second dose in the late afternoon to see if it would help with the RLS and the fatigue any further, but after a few days I didn’t noticed any further improvement, and with it doubling the cost, I didn’t continue with the second dose.

Therefore, 5 mg a day seems to be providing some benefit while 10 mg didn’t seem to provide any additional benefit, but it might have if I had the money to keep trying the second dose longer. But I will definitely keep taking the 5 mg dose every day. If I really wanted to make sure it is the NADH that is lessening my RLS and that it didn’t somehow clear up itself, I could do an experiment and try not taking it for a while. But frankly, I really don’t want to risk it. It is simply too nice to actually be sleeping on most nights again!

Since it looked like I would probably be taking NADH indefinitely, I logged onto the ‘Net to see if I could find a cheaper source than the combing of two specials at GNC. Typing in “NADH” in a search engine brought up a lot of online stores that sell NADH. After checking them all out, the ones that are cheapest was iHerb and Amazon.

Conclusion

If you found this page because you were doing, as I was, a search on “restless leg syndrome” then all I can do is suggest you try NADH. It lessened the severity of my RLS; it just might help you as well. If you’re dealing with fatigue, I can’t say if NADH will work or not. As indicated, my fatigue did improve some after taking it, but it might have been due to other factors. But again, it might be worth a try.
7/27/01

Updates

I took the NADH for six months, but then I tried stopping it, and the restless leg did not get any worse. What I believe happened was that I had been deficient in NADH, so at one time there was a need. But taking it for six months was sufficient to correct the deficiency; so further supplementation was not needed. It never did seem to help with my fatigue.

But by the spring of 2005, my RLS began to really flare-up, so I decided it was time to go back on the NADH. And once again, after just a week or so, my RLS was mostly under control. But after a full month, I hadn't noticed any improvement in my fatigue. I kept taking it for a few weeks and then stopped it again.

As of this last update (5/3/08), my RLS is still mostly under control without taking the NADH, but there was no doubt it helped get the problem under control initially. Therefore, yes, it is worth a try, but I would also suggest that once your RLS has been under control for a while, try stopping to take it and see what happens. It might not be necessary to take it indefinitely.

The above article was posted on this Web site July 27, 2001.
The updates were added as dated.

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