Nearly had enough of this RLS

Never taken it myself but as above I read tramadol is used to treat RLS. Perhaps as you took it, it was just veiling the RLS. I don't think 2mg neupro patches are the maximum for RLS. Has the doctor not tried you on ropinirole or gabapentin or progabalin. The latter two do not have significant augmentation problems like ropinirole, but they don't work for everyone – gabapentin does not work for me.

I take 2mg ropinirole in the afternoon and 2mg before bed. Often if I take an early afternoon nap without taking ropinirole, I wake up with my whole body more or less shuddering, almost as if my whole system is going to stall if I don't forced myself with my last grain of willpower to stand up and move about.

I'm much concerned where it goes from here.

Dear Robert

Im sorry to hear you have such a bad problem.

I just want to mention that I read the data sheet for gabapentin and there is a warning there that you must advise your carers and family that it can cause suicidal thoughts.    That scares me right off it

I only mention it here because someone might read your post and they need to be fully informed before they take it.

Many drugs give rise to suicidal ideation, the SSRI antidepressants and mirtazapine, for example.

But certainly, I had the worst side-effects with gabapentin than any other drug – the only other thing worse was a smallpox jab. I would strongly advise against  (even bar people from) trying to drive while taking them. They can cause spatial judgment problems and cause you to go off to sleep without notice. And unlike alcohol you don't feel any form intoxication.

Dear Robert

I had no idea that suicidal thoughts were a fairly common side effect.   I must make it a habit to read the data sheets of anythig I'm taking.     I suppose that in many cases you just have to accept that there are risks but it sounds a bit frightening.

I've been fortunate that my reactions have been either nausea and unmanageable dizziness or just super drowziness for the whole of the following day.   No thought of driving a car like that.

Thanks again

Graham

Hi Karl,

I know exactly how you feel. I just increased my antidepressant and now my restless legs are worse, mirapex and Requip are making me sick. Can't sleep. Seeing doc next week. I hope he has ideas. I'll let you know if he does. Please share with me anything you find that works, if you don't mind. I am a 72 year old women living in Arizona with my husband. Sometimes the "Golden Years" aren't so golden after all if you have health issues. ??

Hi Karl

I know what you mean.   I am 69 but I lost my last job because i was too tired to concentrate and it was affecting my memory.    I didn't realise how bad I was at the time and thought it was just old age.

12 months ago it was so bad I couldn't sit at a computer for more than a few minutes and my business just about collapsed.

I had little help from doctors although I found one who waqs at least sympathetic.   He strangely suggested that the RLS was triggered by sciatica.   Do you have any thing like arthritus or sciatica?

I am much better now and I credit that to changing my diet.  I have just started a thread on this forum "RLS and Diet"   I suggest you read it in case it gives you some ideas.   I'm not cured but I am getting good sleep from about 4am to 9am.comapred to bad sleep from about 6am to 9am in the past   The importrant thing is that when I'm not sleeping I can do other things.    Sometimes that's just watching TV but I'm writing this at 2am and attending to some other work emails.

Have a look at "RLS and Diet" and please let me know what you think.  I am on a pretty strict FODMAP diet at the moment and its really not all that hard compared to living with full blown RLS.

Like I say not yet a perfect cure but a good half way point while we work out something better.

Good Luck

Graham

Hi Graham. You are right about the many causes of RLS. Mine started when I had severe food poisoning from dodgy ice cream! I was also recovering from a car accident at the time so I was given meds to 'knock me out'. I lost 30 hrs which felt most peculiar. When I woke up my legs would not stop moving around which was distressing. This was 36yrs ago and I have suffered ever since. I have also progressed to the 'jumping' stage. It used to only effect me at night when I was tired but now certain things trigger it at any time, such as resting anything on my legs for more than a minute or siiting on my hands which is a habit of mine I am finding difficult to break! As I stated in my earlier post, the Tramadol help enormously but some days/nights I still suffer. It is interesting reading about certain foods making rls worse. I have to keep a food diary for my diabetes control so I will start noting down times when the rls occurs and try to find some correlation with what I have eaten those days and keep you posted. I agree with Rondre that we have to take responsibility to a certain extent for managing our own health plan. I am lucky that my doctor listens to me when I tell her about my research and lets me change my meds once she has checked out what I am suggesting. I had to see several doctors in my surgery before I found her so it is worth persevering if you have a doctor who is less understanding. Good luck to everyone. Debbie

Hi Copystuff

You are having a tough time with this.  Can I suggest you talk to your doctor and get his help to try the FODMAP diet.    I have had about 15 nights good sleep so I am feeling very lucky.    You mentioned your food diary.   I have found a very long response time from eating the wrong thing.  If I make a mistake at lunch time I will not get RLS until bedtime and then I usually miss the next night's sleep as well.   That makes it difficult to relate what you eat and the RLS.   I dont think there is any problem for a person with diabetese to eat a FODMAP diet.    If she says its OK then invest 8 weeks to see if it helps.   If you need any information about the diet I'm happy to help.   In London there is a big clinic for support.  Your doctor can probably suggest a local dietician who can help.   Just remember that if you try it then be really strict.  For example I can only afford to have one cup of coffee per day with normal milk - all others must be lactose free.   I have to avoid most jams and marmalades because they use apples and pears as cheap fillers  -  I can buy a French brand that works.   Some breads that are supposed to be FODMAP friendly still upset me.

Good Luck

Graham

Copystuff, sertraline is triggering or making your RLS worse, just as the statins did!!!  The vast majority of the world can take statins or anti-depressants and never develop/trigger RLS.  Unfortunately the same is not true for you and me.

We know SOoooooooo much about RLS at this point that there is no reason for anyone to suffer a single second with it unless they have a serious illness such as end stage kidney disease or MS - both of which can trigger RLS, just as statins do.  You can stop the statins but people with those diseases cannot simply turn them off.  Bottom line is, you have to give every single drug the hairy eyeball, including anti-histamines, anti-depressants, statins, melatonin, HRT, antacids, beta blockers, anti-nausea meds, 5HTP...the list is growing and probably near endless.  The list also includes over-eating (especially at night) and obesity.

The upshot of decades of scientific research into RLS has shown that we with RLS have shoddy dopamine receptors in a part of the brain called the substania nigra.  Scientists believe that our dopamine receptors are shoddy because our brains (not necessarily our bodies) are severely lacking in iron.  They know for a fact that our brains are essentially anemic.  Our receptors need iron to be strong, everyone's receptors need iron to be strong.  The rest of the world has plenty of brain iron, we don't.  Anyways, these scientists discovered this through the autopsy of brains of people claiming to have had RLS during their lifetime.  It has also further been confirmed through MRI of the brains of people currently living with RLS.  And what exactly do these dopamine receptors do, or don't do, that lead to RLS you ask?  The receptors shoot the dopamine in our brains down our spines (aka the central nervous system).  They're like portholes.  We with RLS actually have plenty of dopamine in our brains but no good way of transporting it to our central nervous system from where it makes its way to our arms and legs and quiets them.   Now let's assume we're born with shoddy receptors and that we have a drip of dopamine going down our spines whereas the rest of the world has a damn nice stream.  And lets further assume that the drip is actually sufficient to calm our legs and arms UNTIL something goes wrong, either upstream (ie taking statins) or downstream (ie spinal stenosis).  Yes, kinks in your spine or even spinal anesthia can trigger or worsen RLS.  And lesions on the spine from MS can certaintly trigger RLS.

Let's continue.  So why do we get relief from RLS when we stand and walk you ask?  When we stand and walk dopamine is released in a nano-second from another part of the brain called the meso-cortex.  Dopamine is needed to balance us when we stand and coordinate movement.  That's why people with Parkinson's have such poor gait.  No dopamine in the brain.  But we have plenty...in our brains.  Our legs and arms don't discriminate, they don't care if the dopamine comes from the substania nigra or the mesocortex.  Once dopamine shoots down our spine we get relief from RLS.

And why does RLS seem to be worse at night?  Well it might be because everyone's iron availability drops at night, even people who don't have RLS.  Most people are not affected by that drop, but scientists theorize that those of us with RLS are greatly affected by that drop which peaks around midnight and starts to rise again around 3 to 4am.  I think that's why my taking a bioavailable form of iron at night on an empty stomach when I start to get RLS is so effective.  My brain can readily pick up the iron from my bloodstream whereas it can't seem to get any from my bodily stores.  If I were to take iron in the morning, it would be of no use to me at night.  It would be long gone from my bloodstream.  My red blood count is that of a man, a healthy man, and my iron stores are at the high end of normal, yet my brain is anemic...go figure.  So I know there's no point in me taking iron in the morning or getting iron infusions.  And I never ever take iron unless I'm in the throws of an attack.  What's the point?  What's the point of taking a pain pill if you're not in pain? 

Anyways, back on track, as we age our dopamine receptors get ever more shoddy.  Everyone's dopamine receptors regress only they don't feel it the way we do.  It's not so much that RLS is "progressive" like say ALS or cancer, it's that the aging process is inevitable.

Back to why certain drugs make RLS worse.  It's because each drug, in it's own special way, somehow further inhibits the RELEASE of dopamine from our brains.  Drugs that raise our serotonin levels will do this because serotonin will compete with dopamine and the release of dopamine.  Some drugs will lower our already low brain iron levels.    It doesn't take much, especially as we age.  One Benedryl will send my legs to the dark side of the moon.  One Tagamet will do the same.  And melatonin!!!  Don't even ask.  Over-eating never used to cause my RLS to flare, now it does, especially at night.  As a matter of fact, I found a study which showed that mice that were consistently under fed grew NEW and BETTER dopamine receptors.  So that's another thing you can try...consistently under-eating.  But if you're going to under-eat then what you do eat has to be nutrient dense.  Think fish, green vegetables, berries and pure clean water.  That's about it.  Sorry, but if you're really desperate then you can do it.  You can live on those types of food.

Or if you're more in the market for a quick fix when you do get an attack then just like certain substances will inhibit the release of dopamine there are some that will facilitate it.  Yay.  Some people get relief from drinking a litre of tonic water.  Tonic water contains quinine which is in the quinolone family.  Quinolones are amazing dopamine agonists.  So much so that they basically rise to the level of a drug no different than mirapex and the like.  So I personally don't endorse it except in emergencies.  Then there's cream of tartar which is pure potassium and a damn good form of it.  Some people swear that a teaspoon of cream of tartar will get rid of their RLS in 20 minutes and for the whole night.  I tried 1/2 teaspoon of cream of tartar and it got rid of the RLS but left me awake.  Come to find out that large doses of postassium is similar to methamphetamines.  Causes a pop of dopamine but also makes you alert.  I tried magnesium which people have sworn by but it did nothing for me.  A little research into how magnesium affects dopamine and I discovered that it helps our brains to make dopamine (which we with RLS already have plenty of) but it actually INHIBITS the release of dopamine.  For all intents and purposes, magnesium seems to be a dopamine antagonist.  So I personally would never take magnesium at night.  Other people swear by bananas (potassium) or gingko biloba or a teaspoon of mustard in water.  Tumeric/red pepper will cause a release of dopamine according to studies.  And of course, my personal favorite - iron bis-glycinate.

In closing, let's visit what Graham has discovered and other pioneers in the field of RLS.  What these people have discovered is that somehow, someway, what's in our guts affects what goes on in our brains?!!  People on antibiotics have reported a complete disappearance of their RLS symptoms.  People on the FODMOP diet have done the same.  People with high fevers have reported the same.  Why you ask?  Doctors and scientists speculate that we with RLS have an out of control gut microbiome.  Meaning the zoo animals in our gut, which actually belong there, have gotten out of control.  The antibiotics and the FODMOP diet and even a fever will act as zookeepers and get our critters back under control, albeit temporarily.  No one is quite sure what a healthy zoo looks like, or what foods will lead to a healthy and quiet zoo, but it sure seems that when we greatly REDUCE their numbers, either via antibiotics or a diet lacking the indigestible carbohydrates they so love, we get a reprieve from our RLS.

Got all that

 

One more thing if you can stand it.  Every living creature loves and needs iron.  Including our zoo animals.  Those necessary but annoying little creatures are probably stealing way too much iron from our bloodstream.  When we kill them off then our brains have a fighting chance at some of that iron.  And like Graham, I too have IBS.  I think out of control zoo animals can lead to IBS and RLS.  But the vast majority of people with IBS do not have RLS.  So once again, I think it's only those of us born with shoddy receptors and anemic brains that will develop RLS when our zoo animals get out of control.  I read about one man in Costa Rica who nearly died from a stomach virus and developed temporary RLS during this time.  Like the rest of us he wanted to chop his legs off.  He swears that it was coconut water that cured him.  I think that he's probably pre-disposed to RLS but he's young and it may take alot to trigger his RLS.  And that stomach virus must have sucked one hell of alot of iron out of him. But once again, the vast majority of people can come down with the stomach flu or some other bacterial infection and never develop RLS, but those who are pre-disposed...well you know the answer by now.

 

The topic of iron and RLS is rather interesting. Of course, it's well known that iron deficiency can cause RLS, and bowel problems can inhibit iron's absorption from food.

Recently, I had been thinking that when RLS follows a circadian rhythm, we must be able to produce the required dopamine at certain times of the day, in the morning. So, I have therefore been thinking that it must be the control mechanisms, those that tell our brains to produce dopamine that are the problem, and that RLS might even be as much of, or even more of, a psychological problem that a neurological one.

I believe the main control on dopamine production is an iron-regulatory protein (IRP). It would be interesting to know what affects the existence and working of these regulatory protein.

Thanks for such an interesting discourse.  I almost understand but it seems we have so many possible cures its hard to know which one is best.  Perhaps the cause is the same for everyone (low iron) but  the reason for the low iron might be different.     In the FODMAP diet I have found something that works for me,   (Incidently I have not been diagnosed with IBS)   Its interesting to see a possible relationship between what's going on in my gut and my RLS.

But for the short term I will just apply the FODMAP diet until it wears out or augments or whatever.   When the medical scientists have some  easier solution I'll certainly follow that up but for now I can't afford the time and effort to experiment on anything other than simple little things like trying Magnesium.   An experiment that fails costs me too much sleep and leaves me zonked for a couple of days at least.   I can't afford to lose any more days of useful work.   Besides its not good experimentation to have only one guinea pig who has to play the test article and the control article.   I'm, probably being a bit selfish but while  it works for me I'll stay here for a while.    

I would also suggest to others that they try the FODMAP diet to see if it works for them.   Its easy and cheap compared to a lot of medication.  In 6 to 8 weeks you will know if its likely to help.   It needs a good dietician to work with you to ensure that you are properly nourished.  I'm still looking for a good dietician,  The two I've been to have been haphazard and less than helpful.   I am making a presumption that I will be able to expand the diet to be healthier in the future.   If not there is a problem and the experts can probably find their way around that as well.   After all,  vegans survive and grow healthy on what looks like a dreadful diet.

So I hope I'm starving my little zoo animals so much that they leave my stomach iron alone so I can make the dopamine I need to overcome my defective receptors .

Dear Robert

Please never let your doctor tell you your aches and pains are psychological.  At least get a second opinion. I have seen too many people dismissed with this story when the real cause was the doctor or medical science just didn't know enough or the doctor was just lazy.  Maybe this is right once in a hundred times.

You might detect an underlying mistrust of doctors born from seeing friends who deserved better.  I've met good ones but the average is not very impressive.

Hi Graham

Well, "psychological" may need some defining. In the past, my troublesome experience with doctors has been with the prescription of sleeping pills. It's not exactly the GP's at the root of the problem – the licence for the drug suggests limiting its use to 28 days while the medical profession as a whole has been forever raising scares about the drug and the government medical officer has managed to get the drug onto the restricted list. The thing is some nights without medication I would be as unable to sleep (even without RLS) as I would overcome the urge to move my legs with RLS.

As in the opera, Turandot would have that "hope" is born each night and dies each dawn, I wonder that as we get older some of us find in the evening, in some way, less reward for our efforts of the day (or something of the sort), which might well, of course, affect our dopamine levels (and our ability to sleep).

Thanks Robert.  I have a question about your "insomnia" rather than your RLS.  Do you have a sleep disorder or an anxiety disorder?  For example, Michael Jackson, had an anxiety disorder, not a sleep disorder.  Yet his personal doctor prescribed endless "sleeping" pills rather than treating his anxiety.  I believe he had generalized anxiety as welll as anxiety over not being able to sleep which concerned him in terms of being able to function the next day and support his multi million dollar a year lifestyle.  Sleep disorders include things like fibromyalgia and hormone imbalance.

Anxiety, panic and fear are a must.  People who have had near death experiences say our souls come to earth for "soul schooling."  Part of that schooling includes overcoming or just dealing with all of the aforementioned unpleasant emotions.  It's the path we must all take if we want to become warriors.  And by the way, insomnia is my achilles heel as well.  Klonopin is my best friend.  My insomnia would come in waves and eventually pass when I was younger but when the latest wave came and I was working full time and had a young son then I gratefully accepted the klonopin.  My life's goal is to gut it out once again and finally make peace with the sleep monster.  I know that the sleep monster is actually a friend/spirit guide in disguise and is trying to teach me something - probably bravery.

I don't know if you have children but it sure helps to have survived things like panic attacks because then you can guide your children through theirs.  Doctors treat these things like diseases, our whole society does.  Just think if you were raised with the knowledge that these things were coming down the pipeline for you and everyone and that "the dark night of the soul" is a rite of passage, not a disorder.  It would be a whole different ball game wouldn't it.

 

I've had a sleep problem, an insomnia problem, from my teens. Often it has been related to what I needed to do the next day, beginning with hitting a rough patch at work, going for an interview for a job I didn't really want or having a heavy appointment at the dentists, until it was that I needed a pill to sleep if I was going to need to just take in a courier delivery or make or receive a telephone call. A tranquillizer like Valium is very helpful in the worst of such circumstances, but it's more like needing both the Valium and the sleeping pill rather than one or the other.

It has been cyclical (or comes in waves as you describe it), some weeks were much better than others and now it seems I can go a few weeks at a time without sleep medication about every 18 months. Again, I note a certain similarity with RLS (though nowadays that's easier at times than others but never goes completely).

Of course, many people are questioning whether the mind can change the brain, Caroline Leaf among them, and how psychological conditions can affect out physical health – people like Lissa Rankin, not to mention swathes of endocrine researchers.

Interesting!  Our journeys are very similar.  Mine began in my very late teens as well.  I truly believe that everything, and I mean everything, happens for a reason.  Even RLS and insomnia.  I consider it an almost sacred duty to actively seek to understand these conditions and help not only myself but others.  The RLS seems to be very much a part of my earthly body whereas the insomnia feels like my test in this life.  A test that I chose long before I was born.  And one that I will probably choose to repeat if I do not conquer it in this lifetime.  I also chose panic attacks but I have passed that test.  I have no doubt that they will come again and actually have but now the second that feeling arises I recognize it.  I know it, it doesn't frighten me.  Instead I look around and try to figure out what my friend is trying to draw my attention to.  Then that sense of panic is gone in an instant and replaced with a smile.  I hope some day to say the same is true of sleeplessness.  I want to be able to lie down always with a sense of peace, no matter how wakeful I am.  And to endure long hard nights of sleeplessness without medication as I eventually did the panic attacks.