Restless leg cure

[Jakba2003]

Has anyone heard of “deep brain stimulation” as a cure for restless leg syndrome. I have acute hereditary rls and read that Baylor College of Medicine (bcm.edu/healthcare/care-cen... has a confirm case where the cured RLS through deep brain stimulation. I fight this every day and am willing to take any risk to have a better life. Select link and read to the very end.

[Hidden]

Hello Jakba2003. If what you say is indeed true, and I with every breathe that is within me, hope that it is true, I would go from here to the ends of the earth to get such a cure. At this very moment I am going out of my mind again with this hellish RLS. There are times that I am ready to end it all. But with such good news are you bring it would set me striving again with everything that is within me to survive and life a life without this hell. Thank you so very, very much for sharing this. If you get more information and more insight into such a cure please share it again because I am sure it will give a degree of hope to all who suffer such an affliction. All the best to you my friend.

Lonely7

[Hidden]

I am sorry but somehow my username keeps coming up as Toslo2018 when it should read Lonely7 and I do not know how to delete the wrong name. Please excuse until I find out how to delete it.

[Hidden]

I've heard of it for Parkinsons and seen fantastic results. I cannot see it being allowed for RLS - 1) because it is a brain operation and thus would be shied away from and 2) like it or lump it RLS isn't seen as that bad that it warrants such an extreme measure (I know I know, it is far worse than bad).

Can I suggest a couple of things - Gluten free and Vegan diet. These are inflammatory foods and exacerbate RLS. Also Gentle Iron taken on an empty stomach in the evening as it allows for enough Iron to get into our brains and keep the levels up.

Drug wise opioids and cannabis are great, in my opinion, at dealing with the worse of the effects and many Drs are becoming more and more confident in prescribing these, (some still do try anything to prevent prescribing though).

What have you tried to treat the RLS - there are plenty of options open to you before surgery and a combination of approaches might bring you the relief you are searching for.

[Suebeloo in reply to Hidden]

Can I ask a really stupid question? In what way do you take the cannabis? As an oil? Or do you smoke it? Many thanks.

[Hidden in reply to Suebeloo]

I normally smoke it and occasionally vape it.

[BoldMove in reply to Hidden]

I have celiac and have been GF (as much as humanly possible) and it has had no effect on RLS. I did read the DBS article and they did help 1 person, but although I'm very close to Baylor, I don't think I'd try it for the reasons you sited.

[Hidden in reply to BoldMove]

Try 100% GF it is doable ALONG with a vegan diet, if you are suffering you have nothing to loose.

[BoldMove in reply to Hidden]

Perhaps you don't understand what I said so I present a reworded repeat: I have Celiac disease, therefore my life depends on me being GF and have been for many years. I am also a longtime vegan but it has not affected my RLS.

It is the DBS I'd be reluctant to try until much more is proven.

[Hidden]

Its still early days, for getting brain surgery for RLS. My RLS is also inherited.

[Suebdoobdoo in reply to Hidden]

How to you know if heredity. If both parents deceased

[Parminter in reply to Suebdoobdoo]

If it is familial it will show itself very early in life. You will be having some sleepless nights in your teens, or earlier. And slowly it will get worse as you age. At fifteen it might be occasional, and not too bothersome, then decades later it is every night.

[Hidden in reply to Suebdoobdoo]

I don' think it absolutely has to start early when inherited, it's just that it can. As always everyone is different. Mine is definitely familial, though I also have a 2ndry version on top of this. My mother without a doubt had it. She used to call it 'fidgety feet'. You could see it get going eg at the theatre from around her 40's. I remember once having it when very bored as a child aged 9 sitting as politely as possible having to watch the holiday slides of friends of my parents. Then I don't remember it again until I was around 50 when I began to realise what my Mum must have been dealing with. My older sister now also has it though she didn't realise what it was until she described it and I explained. hers comes and goes. I always slept like a log until it kicked in in middle age.

[Jakba2003 in reply to Suebdoobdoo]

If you can recall having "growing pains" in your legs as a child, its probably hereditary meaning Primary RLS.

[martino]

My wife has Dystonia and DBS has been used quite a lot in cases where the person concerned has inherited a particular gene DYT1. There has been considerable life transforming success. DBS is not without risks, I understand a 4% mortality rate, and is very costly. I can’t see it being used for RLS, however severe.

[Hidden]

I was GF for a few years and Vegan - no animal products of any sort for a couple of weeks before things settled.

[Jakba2003]

Wow! This was my first time posting. You guys are all great! I have felt like I have been suffering this alone. Yes, DBS is for Parkinson’s primarily; however, there is a single case of an individual who had their RLS cured. A couple months ago I called Baylor and tried to get more information, but I cannot get a response. I feel the same way; am willing to take any risk at the possibility of having a cure.

Unfortunately, iron supplements is not an option for me, because I have extremely high iron levels.

I have not heard of going vegan and gluten free as a remedy. Beings I have acute hereditary RLS, I am skeptical this is a cure, or will even have an effect.

I am currently on 20 mg OxyCodone. I just reduced from 30 mg because I hate that it affects my REM sleep. It’s just enough to take the edge off, but I still suffer. I’ve been on Methadone (works but destroys rem sleep), ropinerole (works at first but wicked stuff), Gabapentin (little to no effect), and about a billion natural remedies.

Hot baths work, but won’t get me through the night. I want to understand why hot baths work when it is a neurological issue.

Has anyone with acute hereditary rls tried the compression wraps with success?

Not sure how much longer I can take this. I want me sleep and memory back!

[Hidden in reply to Jakba2003]

It is very tiresome going through life tired all the time, and to get a proper life back would be like a dream come true.

I had some cognitive testing done today and afterwards the person who tested me asked me if I had trouble remembering things! Uh oh....what’s that supposed to mean?? I told her «not until my sleep issues started».

By compression wraps do you mean compression stockings? I use these to help calm my movements. Unfortunately, whether this works depends on how wild my legs are. My RLS is secondary (you asked for someone with primary to answer), but I don’t see how it makes a difference; the symptoms are the same regardless.

[Jakba2003 in reply to Hidden]

My only reason for specifying this is that Primary is caused by genes; whereas, Secondary is caused by other effects. Since so many people respond to treatments differently, asking for Primary RLS input it helps me narrow down to what I have. Thank you for your input though.

[Jakba2003]

Corrected and updated original post. This is the article I am referring too: bcm.edu/healthcare/care-cen...

[Jakba2003]

Has anyone by any chance purchased this article: sleep-journal.com/article/S...

I would love to ready it, but not eager to spend $35 for it.