Why does it happen

[beady3]

i take 2mgNupro patch 100 mg Tramodol Ant 150mg Pregablin I have just had 7days with no rls at all , now the last two night have been bad and tonight is going the same way , what happened, I know they say Amatriptaline is a no no but does anyone take it with success thanks

[Hidden]

Hi beady, sometimes for no reason our meds seem to stop working, then after a few days restart again. Why are your asking about Amitriptyline ? Only a few people seem to be able to take it and it not make their RLS worse.

[beady3 in reply to Hidden]

I just wondered if people realy do try Amatriptaline or do we all just give it a wide berth

[Jumpey in reply to beady3]

I tried it once and my RLS went through the roof!x

[cathief51 in reply to beady3]

I tried it and Noratriptiline and it was awful I only took two and that was it. X

[beady3 in reply to cathief51]

Thanks for reply hope you are sorted now x

[cathief51 in reply to beady3]

Yes much better without them, usual struggles but bearable just.

[nightdancer]

Amitriptyline is BAD news for 99.9 % of us. In 27 years of managing RLS groups, I have met TWO people out of thousands that say it does not bother them.

[beady3 in reply to nightdancer]

Nightdancer do you get rls bad or is it not to bad , what meds are you on, I am staying with my daughter and tomorrow I am going home I have a 3 hr journey I was hoping for a good nights sleep but so far no luck xx

[nightdancer in reply to beady3]

I get 1 or 2 bad days a month now at the most. After 14 years of this med regimen I am on, it is perfect for ME, and I am relatively at peace. Sometimes I can feel the buzzing, the "pre RLS" feeling, but my meds squash it right down. I have learned to take them on a regular schedule, and only once in a while the RLS breaks through, then I can take an extra Tramadol, as it is my "as needed" med. I had my decades of pure torture, and pounding my legs until they were black and blue, so I do have severe RLS, the meds just take care of it 90% of the time. When I was on Amitriptyline, that was the ONE med that made me look for the tallest bridge or the highest window to jump out of or off of. That was the worst RLS of my life. Mine started at 14 yrs of age when I broke my back and am almost 62 now. So, I do know what severe RLS is and what it feels like. This is why I am so active against the people in the US that would LOVE to take our pain meds away, if not for those meds, I would not be here on this earth.

[lorrinet in reply to nightdancer]

I second that. I still have a suicide letter I wrote to my family somewhere, explaining that as soon as they were old enough to cope on their own I must leave, they must try to understand the hell I live in and accept my need to end it. I was then very fortunate to discover opiates, and to have a GP and a consultant who were willing to let me have them, so my children still have their mother, for now at least, while my drugs allow it.

[nightdancer in reply to beady3]

Oh did not tell you my meds. I am on opiates for severe chronic pain anyway, from 5 back surgeries and 2 neck surgeries, and surgeries for cancer, I am now cancer free! yay! But, the meds I take for RLS and pain , are extended release morphine, short acting Tramadol, Clonazpam, 1 mg per day, and an old fashioned sleep med called Dalmane in the states. That is my magic combination, and has been, at the same dose for 14 years. I literally have tried EVERY med and supplement under the sun, and the opiates are the only thing that keep me sane.

[nightdancer]

As we always say, just when we think we are "safe", we can always bad nights. Just because you have a couple of bad nights, and with you on 3 meds, does not mean everything has stopped working. I take my meds and 90% of the time I am at perect peace, but there will always be bad nights here and there, for seemingly no reason. Did someone suggest Amitriptyline to you?? Not a good idea, I can promise you, like I said I only know 2 people out of literally thousands that can take it with no problems. Doctors like to use it in people without RLS for prevention of migraines, and to induce sleep. But if it makes your RLS go nuts, it is not going to induce sleep, that is for sure. xx

[beady3 in reply to nightdancer]

Thank you for your answer , my daughter is on those tabs for M E and yes she sleeps for England they are for nerve endings

[nightdancer in reply to beady3]

That is what it is for here, too. It has several uses, really. I was given it for prevention of migraines, and that was when I was just learning about RLS. So, Amitriptyline made me learn FAST! IT did not help my migraines, made me search for the highest window, and certainly did not help me with sleep. OF course, for people without RLS, it is a good med for some people.

[Hidden]

Yeah, isn’t it frustrating?! Just when I think I’m on a roll, bam! A bad night due to RLS! Soooooo annoying!!!

[Hidden]

Me again!

Just wondering: do you keep a diary of the amount of sweets you have? I’ve recently discovered that I start having bad nights if I have one or two very sugary things over multiple consceutive days.

For example: If I have a coke I am fine, but if I couple that with cookies the day before that and a pastry the day before that, bam! Not good!

Something for you to look into?

This syndrome doesn’t make any sense, so I hope you can find semblance of a pattern one day!

Good luck and take care,

Jessica

[Insomniak]

Hi Beady, I have my meds fairly well sorted and generally have RLS under control but even so I have what I would describe as a flare up of RLS about once per month when I get the sensations all through my body legs, arms shoulders and the medication just doesn’t cope. This seems to be a feature of RLS. I get tried linking the cycle to various causes but it seems to be random. You mention that you have a 3 hour trip to do - be careful if you are driving. One modification to my lifestyle has been that I no longer do long solo motorway drives During these flare up periods for fear of falling asleep at the wheel. Bus and train are your friends.

[Eryl]

The most likely reason for the change is your diet. I would suggest you keep a comprehensive food diary, and look for a pattern. I've found that excess sugar triggers my rls, or occasionally too many other carbohydrates. Be aware that the time taken to metabolise different types of sugar (sucrose, fructose etc) varies, so some types will cause a sharp peak in blood sugar while others (and other carbohydrates) will cause a slow build up that may not cause a reaction until a small amount of an easily metabolised sugar is ingested and to tip the balance.

[Hidden in reply to Eryl]

Eryl,

Interesting re metabolism of different sugars! Thanks very much for the info.!

[nightdancer in reply to Eryl]

Diet does not affect everyone, I do not have one food trigger. But, a lot of people do.

[John_naylor]

Interesting! I have often thought that I can get away with a bit of chocolate but then either a migraine or RLS bites back. It seems to be an accumulation, after 3 or 4 days of small ‘sins’ and I must make a more careful food diary to try to isolate the cause.

[Hidden in reply to John_naylor]

Yes, isn’t it?!

Hope you’re doing well, John!

[John_naylor in reply to Hidden]

Fine, thanks Jess. Just 50mg Tramadol and I’d be 100% but, just like chocolate, I’m trying to resist for a while!

[connie50]

HI Beady3 don't take Amitriptyline if you've never taken it DONT it will send you up the wall,it did me anyway.there are loads of people that take this med but I don't think they suffer with RLS. X CONNIE 50