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Extreme augmentation, what should I do

Posted , 5 users are following.

ayomi96
ayomi96

Ropinrole 0.25g  once a night seemed to work well for my rls symtoms but after a 2 months of using it , it stopped working moved on to mirapexin 0.18mg three times a day  but that didnt seem at all for me. I do not know what has happened as none of the medicines that doctor has given me is working at all. Please help 

 

0 likes, 14 replies

14 Replies

  • ratfancy
    ratfancy ayomi96

    Posted

    I'm really in the same boat - will see a new neurologist in 4 weeks.  I've heard Lyrica and Gabapentin are being used.  That and methadone!  Codeine works the best for me, but I live in Florida with a crazy oxy addiction problem and new drug monitoring laws.  I'm really sleep deprived a lot of the time.
    • ayomi96
      ayomi96 ratfancy

      Posted

      It's very distressing also as I am so young I'm only 19. Inorder to sleep sometimes I have to take nytol
  • Udon
    Udon ayomi96

    Posted

    Ayomi, Nytol may actually make your RLS worse.  So will drugs like Benedryl, Tagamet, Zantac, anti-depressants, melatonin and the sugar substitute splenda as well as diet coke.

    Could you be anemic?  Do you have iron capsules in the house?  You might want to try one iron pill (on an empty stomach and maybe with some kind of vitamin c) next time you have RLS.  It takes about 45 minutes to kick in.  Do not try more than twice without discussing with a parent or doctor.  I am not anemic but for some reason it works for me when taken as described.  Even if it doesn't work, you might want to check to see if you are anemic and have normal stores of iron.

    Good luck and keep us posted.

     

  • ratfancy
    ratfancy ayomi96

    Posted

    I was going to chime in on the diphenhydramine HCl  - to stay awake from OTC sleep aides as they increase the problem.  I had my ferritin checked and it was normal, so I'm not doing iron because I'm 62 and generally not good for older people unless anemic.  So what to do...here I am up in the middle of the night typing this!  If I find anything new in a couple weeks, I'll repost.  I feel your pain.
    • graham9772
      graham9772 ratfancy

      Posted

      Dear Ratfancy

      I am interested in your remark about more mature people and iron supplements.   I'm 69 so I better get some advice.    A while back my doctor seemed relaxed about the iron but my RLS was much worse then and perhaps he was thinking that anything that helped with the RLS was worth some other risks.   On druther hand I dont want to injure myself just to get rid of RLS so if I have to I will find a balance between iron and legs.

  • graham9772
    graham9772 ayomi96

    Posted

    Dear Ayomi96

    I am sorry to hear that RLS is giving you such a bad time.

    In this forum there is a discussion called "RLS and diet"   I suggest you read that post as it concerns a diet that was developed by the Monash University in Australia called a FODMAP diet.   I have been stricly following that diet for a while and it definately has helped my  RLS which I have had since I was in my teens.

    Another relevant post is "RLS S\tarted Riponole does it really help?"  One of the contributoars there is Shirley14923   She has been on the FODMAP diet for about a week and has 5 or 6 good nights sleep.   You can't do better than that.  I think the worst part of RLS is the tiredness and other problems that go with living on one or two hours sleep every night.

    The diet is not some crazy Fad diet.  It was developed for people with Irritable Bowel Syndrome so perhaps there is some common causes between the two syndromes.   The medical profession is doing their best but they don't know what the cause is.     For people with ibs this diet provides relief in about 75% of cases so its not perfect and it might not help all RLS people but its a small effort to try it out.   I have extended it a bit and cut out all caffiene and alcohol but I dont know that I needed to.

    About a year ago I tried an iron supplement and now still take about 100mg of iron per day.   It helped when I started although I didn't have any mneasured lack of iron.    It was just a hunch because iron is connected to dopermine and RLS might be related to dopermine.   A bit of an amateurish longshot and I would definately agree that you should see a doctor.   I also take 1500mg of Viatmion C because this helps the body absorb the iron.  The FODMAP diet is a bit restrictive so you probably need your doctor and a good dietician to keep an eye on you and make sure you are staying healthy.    If that costs too much then just make sure you are getting as much variety as you can within the diet,   The first time you look at it you will think its terribly restrictive but there are still hundreds of things you CAN eat so you have to be positive.

    The idea of the FODMAP diet is that you follow it super strictly for about 6 weeks or so and then you start reintroducing the banned foods to see what you can tolerate.  For example I am lactose intolerant but I can take a couple of cups of coffee per day with normal milk and for the rest I use lactose free milk.   There are other things like cherries - you are allowed to eat three.   You just have to shrug and say that three is better than none.   I have tried to reinitroduce some foods but they didn't work out too well so I'm stuck on the basic diet at the moment and happy to be sleeping not too badly.  I am looking for a dietician who can help me with this phase.

    Excercise and 2 litres of pure water per day has also been recomended and perhaps have helped.   Can't do any harm so even if I just imagine they help its good enough for me.

    I have mentioned in this forum that Monash University is running a trial to see if a certain set of excercises helps with RLS.  I voluntered to be a guinea pig.   They should have some feel for their results in about 10 weeks so I'll let everyone know if the result is positive.

    If you want more on the FODMAP diet do a search for        Monash FODMAP   and get the full details.   They even have an app for your smart phone.

    Good Luck

    Cheers

    Graham 

    • Udon
      Udon graham9772

      Posted

      Do u find that unless u take the iron right before bed it doesnt help? First off, everyone's available iron drops at night. We're more sensitive to that drop. RLS has been nicknamed the anemic brain. So even if our stores are high it seems our brains can't call it up from there. But at least in my case, if I take a bio-available form of iron such as iron bisglycinate on an empty stomach it not only gets rid of the RLS but induces sleep. The Rls brain has plenty of dopamine but we have shoddy dopamine receptors. It is the receptors that shuttle the dopamine through our central nervous system to our peripheral nervous system meaning our arms and legs. Once there the dopamine quiets our legs. Our receptors are shoddy because of lack of brain iron. It seems that our brains can pik it up from the bloodstream but not the stores. The iron just works for me for the night. No different than if you took a pain killer in the morning for an evening headache.

      The world of the very small probably controls the world of the very big and the very annoying. So our gut microbiome is probably controlling our rls. The fodmop diet is designed to keep our zoo animals at bay. That is a shot in the dark. You would be better off consistently under eating which is proven to increase the number and density of our d2 receptors. Many people have reported temporary relief from rls while taking antibiotics. Maybe because it lowers the gut bacteria. Every living thing loves and needs iron. Our resident bacteria are no exception. So if we have too many they might be hoarding our iron and u are probably growing yours by leaps and bounds if u are taking a form of iron that tends to stay inthe gut. Also, when our bodies sense bacteria overload the alarm is sounded and it goes into all out iron withholding mode in an effort to starve out the critters. It does this via a substance called hepcidin.

      There are trillions of bacteria in our guts of varying kinds and they have evolved to eat just about anything we eat, including fod mop foods. But hey if it's working for you then great. No one knows what an rls friendly gut microbiome looks like or how to achieve it.

      Stick with the iron and try consistently under eating especially before bed.

    • graham9772
      graham9772 Udon

      Posted

      Dear Udon

      I am far from an expert in these matters but I htink the FODMAP experts would say you are on the right track.

      FODMAP stands for

      Fermentable

      Oigo-saccharides

      Di-Saccharides

      Mono-saccharides

      And

      Polyols

      They are sugars but they don't include Suchrose.

      In my case if i eat a FODMAP early in the day I will still have a bad night.  I dont klnow what the leadtime is between in the mouth and in the large intestine where the problem apparently occurs.

      So we are all different in our reaction to FODMAPS and most people tolerate them well and enjoy eating anything that fits .    Some of us have intolerances to one or more FODMAPS.

      So one way the IBS occurs is that some FODMAPS react with bacteria in the gut somewhere as you suggest.

      The low FODMAP diet is just a methodical approach to leave out all the possible factors that are messing up your irritable bowel so you can then systematically reintroduce  FODMAPS one at the time to determine exactly which FODMAPS you cant tolerate and ultimately offer you a diet that allows you to be healthy while getting a healthy amount of sleep   The advantage of an orderly start with the FODMAP is that it helps you determine which foods you can't eat   

      Remember it doesn't work for everyone but I suggest you try it if your RLS is bad enough   

      Incidently I found that building up the iron was a gradual thing so I take the iron in the morning.   I can miss it for one day without any problem

      There are so many variations in RLS  and our responses that we obviously have a long way to go for a universal fix.

      Cheers

      Graham

       

  • ratfancy
    ratfancy ayomi96

    Posted

    this is very interesting http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.351.1422&rep=rep1&type=pdf

    I'm researching the FODMAP (Fermentable Oligosaccharides, Disaccharides, Monosaccharides And Polyols) diet.  I doubt this connection for all people.  I have had RLS all my life and not one IBS symptom.  That's the link:  that IBS people have more RLS.  However, that does not mean changing diet will make any difference for people not inclined to IBS. (My degree is in clinical nutrition and I will research further.)

    • graham9772
      graham9772 ratfancy

      Posted

      Thats an interesting article on IR light but iuts old so perhaps it didn't go anywhere.   Must follow up the author.

      I uinderstand what you mean about IBS people with RLS being cured or relieved by the FODMAP diet  and that this doesn't prove that another class of people (those without IBS but with RLS) may not respond.

      However there are two people IO know of who have not been diagnosed with IBS who have responded favourably.    It is possible that some /many people with rls also have a mild dose of ibs or just haven't been diagnosed with it.   These people would possibly benefit from the diet.   Needs some research but perhaps it points to a fix for some.

      May I suggest that rather than researching the FODMAP diet, which effort is bound to come up with indicators to more research, you just spend the next 6 weeks following the diet and see what happens?  If it doesn't help you why waste the time on the research?   The diet is  just about free and doesn't take any extra time to eat.

  • ratfancy
    ratfancy ayomi96

    Posted

    I just wrote to my doctor about trying a new drug:  suvorexant.
    • ayomi96
      ayomi96 ratfancy

      Posted

      I'm presuming you live in a the USA where rls is understood a lot more than in the uk. I live in the U.K. and my doctor is based at my university campus, as you can imagine he hasn't come across anything like this in his career so he knows just as much as I do about drugs that might help. To make matters worse not a lot of drugs are liecensed for the treatment of rls like 3 I think in the uk and I have tried 2 out of the 3
  • ratfancy
    ratfancy ayomi96

    Posted

    Finally got into the neurologist and she gave me samples of the Neupro patch (2mg).  After just one night I slept like a baby, which I haven't done for many months.   However....my insurance (which I pay $600/mo for) won't pay for this patch and to buy it would be $564 per month.  So I'm not sure I want to even put on another patch.  I would imagine the withdrawal would be very bad.  She also gave me codeine sulfate - which works, with the only side effect being constipation.  That is $15.00 for a big bottle.  Geez..  Take your pick - comfort or poverty!
    • ayomi96
      ayomi96 ratfancy

      Posted

      I have recently been but on patches as well. Funnily enough my symptoms have now moved to my lover back. I started it just today I hope it works. My symptoms haven't hone away yet.
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