RLS

It is very interesting for me to read all the comments on RLS and I want to add my own story.

About 1o years ago I was prescribed amytriptilene. After +- 2 years I developed spasms and twitching in my legs, which I now know to be RLS. I told the doctor I seem to be allergic to the drug and he prescribed stilnox for sleeping. It went well for a year, but I suffered from frequent night urination and found myself often in front of the fridge eating away, only notocing in the morning by the dishes in the kitchen. And after a year the twitching was back. Again to the doctor who gave me the smaller brother of stilnox, adco-zolpidem. All was quiet on the western front for many years and a couple of months ago, oh horror, the unpleasant spasms plus frequent night urination started all over again. I went cold turkey off the zolpidem and did not sleep for 4 weeks (only3/4 hours in the early morning). Back to my trusted GP.

I must mention that I am a diabetic and went home with two new meds: Tegrotol, that numbs the nerve ends in peripheral neuropathy, and Oxybutyn Chloride which numbs the nerves in overactive bladders mostly. I take no sleeping meds and have to confess sleep less (+- 6/7 hours, but better. I also did research and increased magnesium (Epsom salt baths), Vit. D, Iron, Vit.C and 'Rescue Remedy' and for the time being, since 3 weeks that is, I have no more symptoms of RLS. I walk the dogs and stretch the legs in exercises, nulled coffeine, increased vegetables (am vegetarian) and avoid stress like the plague.

Maybe somebody else can be helped by the aforementioned combination of nerve and muscle relaxing drugs. I hope so, because RLS really is hell on earth.

Friendly greetings from Barbara in South Africa

(PS. In my case the amytripilene and other benzodiazepenes seem to have TRIGGERED RLS)

8 Replies

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  • Thank you Barbara, most helpful. How much units of each vitamin are u taking? Iron is tricky for me since I have IBS I once read that taurine is good for diabetic peripheral neuropathy. Please do research however I just remember reading one time.

  • Hi Barbara,Thankyou for sharing your story.The big clue to your improvement in symptoms I would guess is due to you being prescribed the Tegratol.Their was a study in 1984 looking into its effects on RLS and the results showed 61% showed a a reduction or no symptoms after 5 weeks on Tegratol.In combination with all the other measures you are taking you have found something that works for you .Thats great..Pippins

  • Thank you Pippins (nice name). I also had the 'suspicion' that the Tegratol made the difference, but also the nixing of Benzodiazepines, which very plain to see caused the whole syndrome in my case. RLS seems to be the syndrome of thousands of reasons, different from person to person, but the results are mostly the same and always horrible. Greetings, Barbara

  • Many people who have never had any trauma, no drugs, nor bad diet have developed RLS. there are 5 groups of people who seem predestined to, by inherited genetic structure, develope RLS. I have roots in two of those groups. My mother had 9 sisters who achieved very old age from 90 to 106 and all suffered serious RLS.

    The groups who mostly all have RLS are Icelanders, Cajuns, Applachians, French Canadians and Eastern European Jews.

    All the former, had Eastern European Jews who were mixed into the groups 2 to 300 years ago and because of the close proximity of living and no outside genetic mixing, these groups are inbred to the point that every one of them has genetic charts that are very similar. I developed the trait at exactly the same age as my mother had, as did my older brother and a younger brother. None of us had any illness or injury nor any drug habits. If you are descendant of any or more than one of these groups, you will develope the trait between age 40 and 50 or earlier.

    Case closed.

  • Hi Windwalker, that is very interesting and almost unbelievable. Do you want to say that EVERY Icelander and every member of the other 4 groups suffers from RLS? Funny enough my grandmother had 7 siblings who made it to the same fantastic old age and I don't think any of them had RLS. Maybe and hopefully I am one of the very lucky ones who got out (for the time being....)

    Kind regards,

    Barbara

  • I cannot say every single member of each of the 5 groups have RLS, but in Iceland they are all descendants of 11 families who settled on the coast and every Icelander is from that 11 families. Their DNA charts, when taken from one, looks the same as from another. My neurologist says they do all have some form of RLS.

    My own ancestory is from Appalachian and Eastern European Jews and were on the plateau since 1656. My parents and every family I grew up

    with has it, and now thru my own ignorance and youthful invincibility, has caused me to pass the gene along thru my son has married a half Jewish girl whose family is riddled with RLS and my two grandsons have both started at under 40. One takes Methadone and the other takes

    Requip.

    I have interviewed dozens of Jewish people in the area around where I live and each time they are surprised to find it to be genetic instead of something they did wrong.

    When I was young my dad hired some Cajun boys to do seasonal farm work and they were so restless they worked from daylight until dark so they would be tired enough to sleep some, but excessive movement kept them getting up earlier than even we did and we were up at 4AM.

    I know my ecxpierence is not scientific, but hearsay and personal, but I believe it.

  • WHAT A STORY! Thank you, Windwalker. It's good to know where your RLS comes from, but it's very bad to have it at all.

    My family comes from Kazakhstan originally. Eastern Europe. One of my grand aunts in Estonia was Jewish. My mother Estonian. My name is Barbara Casack. I seem to have rather healthy Northern ancestors. I'm very interested in the history of people - with or without RLS. The research in this matter in Iceland looks quite easy with only 11 families involved. Can you imagine what a huge heap of work that would be here in Africa, or even only South Africa? The mind boggles. Anyway, RLS seems to be much wider spread than I ever thought and I feel very sorry for the ones affected. In a very bad night, my left leg and my right arm shot up to almost under the ceiling at the same time and if you don't sleep you can die. That's apparently why people take drugs like methadone and barbiturates, opiates etc. They know they can die from not sleeping, or at least go very crazy!

    I will look into RSL among the African tribes a bit and let you know.

    Greetings, Barbara

  • Hi majackie I am in New Zealand and as far as I know none of my family have or had RLS ,,apparently my great great grandfather was an African slave that escaped to Jamica then came on out to NZ I often wonder if he might of had it ? I don't know anyone here to talk to about RLS no one I know has the same problem ,so health unlocked is very interesting for me

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