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Things I have tried and how they went.

Posted , 27 users are following.

graham9772
graham9772

I suggest a discussion where we limit ourselves to as brief as possible statement of "I did this and the result was...."   the reader can then look up other discussions a sort of brief index or summary.  

It might be good if the forum administrator can pin it to the top of the lists.

I will start with my next post.

 

4 likes, 46 replies

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  • graham9772
    graham9772

    Posted

    Ropinrole   - Brand name Repreve

    This worked for me for about 3 months.   The relief was fantastic and I was awake all day and could focus on my work in a way I had not been able to for years.   Then it suddenly made me dizzy and nauseus to the extent I couldn't walk down the hall without a hand on each wall.   I had to stop it completely.

    Cheers

    Graham

  • graham9772
    graham9772

    Posted

    FODMAP diet   Not a perfect cure all the time but the result has been clouded by a couple of other conditions that might either produce similar symptoms or trigger the RLS.  These are sciatica, arthritus and hamstring pain caused by something unknown.

    This has made a vast improvement in my life.   I have had no side effects. I would recommend anyone tries it.   I have heard of someone who dose of medication as well as the FODMAP diet and last I heard had a complete cure.   It was designed for irritable bowel syndrome (ibs)  patients and I have no idea why it works with my RLS.  I don't have ibs.   It works for ibs in about 70% of cases so there might be RLS people for whom it doesn't work.

    Cheers

    Graham

     

    • graham9772
      graham9772

      Posted

      I have found an improvement on the FODMAP diet.

      It is a "Low Chemical Diet" developed by the Royal Prince Alfred Hospital in Sydney Australia.   It hasn't been promulgated around the world like the FODMAP diet for various reasons.

      It is another elimination diet and I haven't had time to reintroduc many foods yet.   Its a very restrictive diet so its not easy to stick to unless you remind yourself about the misery of doing nothing.

      It has been very successful for me and I had 16 consequetive nights with zero RLS symptoms until I "challenged" my body with some pears.  The symptoms returned for three nights and then I have had about 10 nights of good sleep.

      If you are interested in more information please let me know here and I will pass on the details.

      No-one knows who it will help and I dont know how long the relief will last but so far so good.

      Cheers

      Graham

       

    • CreativeNikki
      CreativeNikki graham9772

      Posted

      How long did you have to follow the diet to start seeing results?  I've been trying to eat mostly paleo (plus some sheep's milk cheese and cream in coffee).  It has only been a week, but it hasn't helped so far.  

  • chris90246
    chris90246 graham9772

    Posted

    Tried Diazepam...no effect.

    Zimovane...no effect

    Gabapentin...no effect

    Ropinerole...whole year's freedom from RLS till augmentation set in. Episodes then stronger 'twitches',  lasting longer.Awaiting new referral, to neurologist.

  • graham9772
    graham9772

    Posted

    Magnesium   I tried magnesium diglycinate three tablets equivalent to 150mg elemental magnesium.   Took them in the morning.  Other people have reported in this forum that this completely fixed their symptoms

    I had a bad reaction - really annoying.     RLS until 5am for the following two nights.   The bad effect wasn't permanent so since it works for some its probably worth trying.

    I stopped Mg completely for a week or so and I have now gone back to one tablet in the morning which (I think) helps with cramps.

  • Udon
    Udon graham9772

    Posted

    Hi Graham.  You know what has worked from me...iron bis-glycinate and 1/2 teaspoon of cream of tartar, which is pure potassium.  Magnesium and taurine were not magic bullets - meaning instant relief for one full night.

    I keep reading about people who have good luck with 1/2 to 1 teaspoon of mustard in some water.  Yuck.  Going to try it next time I have an attack.

    "what doesn't kill you only makes you stranger"

    Try it with me!!!!

     

    • graham9772
      graham9772 Udon

      Posted

      Are you just suggesting this for a laugh?    You know I'll try anything.   I am in a good spot at the moment.  The last two nights I had just a hint of RLS before I went to bed so I walked for no more than 20 minutes and it went away all night.    A whole nights sleep!   However if the RLS comes on again I'll try the mustard.   I think its allowable on my diet but its sure going to be a interesting taste thrill.   I'm not silly enough to think Im cured because of two nights sleep so I can still be a guinea pig for the MUSTARD soup treatment.
    • CreativeNikki
      CreativeNikki graham9772

      Posted

      I'm guessing here, but I think the reason mustard would work is that it is colored with tumeric which is anti-inflammatory.  I've been making a nightly "tea" with coconut milk, tumeric, cinnamon and ginger.  It hasn't helped me yet though.  

  • Udon
    Udon graham9772

    Posted

    I kid you not.  It's supposed to work quick - 20 minutes.  I love mustard, just not in water.  I'll bet dollars to donuts that it's the tumeric in the mustard that stimulates a pop of dopmaine.  If I don't get an RLS attack soon I may have to induce with benadryl.  I feel like a kid with a new toy.

     

  • chris90246
    chris90246 graham9772

    Posted

    Been on the low-FODMAP schedule for ten days now. NO RLS --which could be co-incidence of course. ( the bane of intermittent disorders is this lack of certainty) Still, it's been bliss.

    As for IBS, the major reason I'm living without a bread roll on the low-FODMAP,  I had an almost symptom-free  day yesterday, and a good noght's sleep. Wow!

    Have decided to employ a registered dietitian and see her Thursday. Finding one is like searching for some rare,near-extinct creature!  I'll post re.what she says about the diet ,IBS and the RLS.

    Sympathies to you all, brave souls. What a shame that life is so grim for some of us.

    • graham9772
      graham9772 chris90246

      Posted

      Even greater news,

      I look forward to hear about your dietician.

      Hopefully it can only be better news.

  • bridle17
    bridle17 graham9772

    Posted

    When I first had restless legs I found cannabis to be very effective, not only bringing almost instant relief, but also helping me to sleep as well, but like most other remedies it seemed to lose its effectiveness after a few years. I understand Parkinsons sufferers also find it helps.
  • jan40974
    jan40974 graham9772

    Posted

    Neurontin 300, 2x a day; Ultram 2x a day; Requip1mg - 1 in am, 1 at noon, 2 at 5pm, and 2 at bedtime s the magic combination that works for me, yet sometimes I have the "walking blues" if I don't take the 5pm on time. Drives me nuts. I was on Carbidopa-Levodopa a few years, but my neurologist replaced that with the Requip. I've had RLS since I can remember, but rarely, until about age 40, then it became worse and more frequent as years passed. My mom had it too, even on her deathbed. I know that's not encouraging. I definitely will try the mustard/magnesium/taurine tips; and will look up the FODMAP diet several mentioned. It just seems as though there should be a breakthrough by now!
    • graham9772
      graham9772 jan40974

      Posted

      Thanks for this information.  Its good to share such knowledge.

      Of course I recomend the FODMAP diet so if you give it a try I wish you luck..Unfortunately it is hereditry.   Both my parents had it and my sister and I have it.   Now my children are developing it and they are just in their 20s.    So we all hope that someone comes up with something bewtter than a tough diet.   I am amazed at the complexity of the drug regime you have developed.   It must have been a major effort in experimenting.

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