Sleep improvement

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I’ve suffered RLS for 40 years. For me it’s severe. I’ve altered my lifestyle to cope. I sleep wherever and whenever I can. Usually only for about 10 mins before my RLS disturbs me. On long journeys, for instance, I have to stop at every services to rest. I plan what I’m going to do through the night. I also suffer Depression. I’m therefore a neurological wreck. Serotonin and Dopamine deficient. I’m on Pramapexole which works to some extent. I fact, if I didn’t take Pramapexole at around 16.30, I wouldn’t get any sleep at all. I recently suffered a Depressive episode and came close to ending my own life. If it wasn’t for the fact that I’m a father and my two daughters need me, I doubt if I would be here now. My depression medication was altered to Venlafaxin. Initially 37.5 mg. It worked and depression improved but still plagued by RLS. On visiting my doctor again, he increased my Venlafaxin to 75mg, slow release. Which brings me to the point of my discussion? Since I’ve taken 75 mg, my sleep has dramatically improved. I’m actually able to have a reasonable nights sleep. Not all the time but enough to overcome sleep depravation to a manageable level. Hope this all helps you.

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  • Posted

    Dear Thomas

    I have also had RLS for many decades and I probably understand what you are going through.   Im glad you have your daughters to make life worth the effort. 

    I tried several drugs and quickly became intolerant of them.   I had found a connection between how bad the RLS was and what I had eaten though it was difficult to see a pattern.  A year or so ago I tried a diet developed by Monash University for ibs sufferers as it seemed to be related.    I quickly improved and now sleep for about 8 hours every night with only the usual interruptions 70 year olds have to accept.  The only medicine I take regularly is an iron tablet about every second day.     Some people on this forum have suggested a better form of iron but I am reluctant to change.    Once a week I get a bit of RLS but I walk around for about 10 mins max and it goes away for the night.

    There is a discussion in the RLS topic titled "RLS and diet" which have reference to web sites that can probably help you if you want to try the diet yourself.   The diet is supported by some hospitals in the UK and a university in the US so its pretty respectable if your treating ibs.   Now I know you have RLS and not ibs and there are only five others people with RLS who have tried the diet and four of them reported close to 100% relief.   The diet doesn't cost much but the first 8 to 12 weeks is a very restrictive exclusion diet so at the end of that time you are supposed to be generally symptom free so you can start reintroducing real food.  My doctor said this is difficult and told me to get help from a dietician but I haven't found a really helpful dietician and everything I reintroduce seems to cuse a problem.   I am a bit stuck on the exclusion diet which I am sure is not healthy but its better than the alternative.   The diet is just about free so no-one profits moneywise.   Monash publish a book and a phone app for about AUD10 each.   The App doesnt work on my phone but a friend with ibs  tells me its very good.   Other sites have free lists of allowable foods.

    If you want to do it but have any problems please feel free to contact me through this forum and I will try to help.

    If you try the diet do it very seriously.   I have found that a small lapse can ruin a couple of nights sleep.

    Good Luck

    Graham

     

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    • Posted

      Hi I have tried the website regarding the Diet, tells me this has been removed, no luck on other sites. Is there any other sites I could try as I definitely want to try this diet, many thanks

      Joan

       

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    • Posted

      Hi Joan

      I dont really know  what I am doing.    I had hoped that it was a link that you just had to click on but I think its slightly more complicated.

      I think you have to copy the link then paste it in the url line

      So highlight the full link then go to a blank web page and highlight the url, right click and select "paste" then enter and it should take you there.

      If that doesn't work then go to the top of this page where it says

      home>Discussion forums>brain and nerves>Restless Legs Syndrome

      and click on restless legs syndrome.

      You see a list of all the conversations.

      Go down to about the 30th conversation and it ought to be Restless legs and diet.

      Copy and paste is the easy way!

      If you are still without it let me know

      I really hope the diet helps you.

      Graham

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    • Posted

      The link in Graham's post below will now work. The issue is when pasting urls sometimes a space and semi colon are inserted at the end of the pasted url so it goes to a "Page not found". I am aware of this issue and it has been reported.

      Regards,

      Alan

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    • Posted

      Hi Graham

      Have got the the diet off the link you provided, thanks. Am now trawling through this to see what I can and should not be eating. This is confusing, to me, Food group on Low Foodmap's has a great deal of food suggestions, but Recipes and snack ideas are very limited to what you can eat. Are there more recipes available, sorry have lost the plot, do so want to try this diet!

      Joan

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    • Posted

      Hi

      I have a couple of comments being moderated at the moment in the IBS forum   I think because I included details of a children's hospital

      Where do I find out how to send a private message so I can get this iniformation to the person quickly

      Thank you

      Graham

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    • Posted

      I just realised on some there is a picture of an envelope that I think I click on.

      None of the symbols where I was looking had the picture

      Including me

      Does that mean I decided not to receive private messages?

      Thanks

      Graham

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  • Posted

    I too have RLS, am taking 900mgm Gabapten, over the last nine nights have had about 14 hours sleep. Have appointment to see Neurologist and pinning my hopes he will offer me alternative medication. I have been on Ropinrole, Prameprexole. 3mgm Patches, all of which have helped in the past. Belonging to this Forum helps me to know of how many other people have this debilating illness. Negative remarks from people saying "I have RLS" when they haven't upsets me as RLS rules my life as to what I can and cannot do. I am pleased that your daughters make your life worth living, all daughters have a special place in their Fathers heart and will always need them. I hope you continue with the progress being made and wish you and your family well.

    Joan

     

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    • Posted

      Hi 

      I am on 900 Gabapentin as wel as 1mg of Neupro and 50mg of tramadol. The Gabapentin has been great for my morning leg pan- none this morning which is great- but he insomnia is bad. I overcome this to an extent by taking 1.25mg of clonazepam before I go to bed so slept from 11.00 to 4.30. All in all not bad! If you haven't tried clonazepam it may be worth doing. I was on as much as 4mg but got down ok

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  • Posted

    thank you for your input. I take ropinirole 1 mg twice a day which generally works if I am exact on the time I take it. But sleep is a problem and my rls doctor (a pulmonologist) finally said I had to see a psychrist which I have and she has put me on Trazadone 100 mg, gabapentin 600 mg, .5 mg clonazapem and I sleep 5 hours which isn't enough to keep me from being tired. I reallt think going to her is a waste of my time and she only will see me once every 3 months She says how are you, I say fine except for lack of sleep.. She okay I will see you in 3 months.. Because I am 77 years old, they are always so afraid of giving me anything even though I am healthy and active except for the RLS. I would love to find a GP who could treat me and not deal with all of these specialist who really don't help.

    Thanks for listening.

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    • Posted

      Hi Phazie

      I am about 70 years oldand have had RLS forever.

      However I have found that a diet recomended by Monash Hospital in Melbourne has almost completely cured me.   I usually get 8 hours sleep a night and sometimes 10.

      The details are mentioned above so read my post in this discussion and then follow this link for more information.

      Please give it a try.  Its not expensive like drugs,   it has only one side effect which is food boredom.   You can work a bit harder and probably find some exciting foods.

      You must follow it exactly.   I have been having normal coffee if decaf is not available.   I used to get away with one cup but I dont think that is possible.   If you find you are lactose intolerent then take it seriously and only use lactose free milk.   I can accept a little bit of laose so I have a couple of squares of chocolate on days when I have been otherwise well behaved.   

      There are more details at this link

      https://patient.info/forums/discuss/restless-legs-and-diet-372883

      The diet is a drag but if all goes well you only spend 8 to 12 weeks on the initial exclusion diet and then you start reintroducing foods.  At yhis stage you hope you will find that you are iontolerant of only a couple of food groups and your diet is a bit better and you sleep like a baby.Some people get relief on the first night.

      Remind yourself that its nothing to do with healthy eating.   Many of the bad foods are exactly what you would now call healthy eating.   No more apples, onions, broccoli garlic milk     All healthy All out for the initial period.  You will love carrots potatoes bacon eggs and some fried capsicum with chilli and rice.

      Please try it just in case it works for you too.

      Cheers

      Graham

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