Think you are all amazing. - Restless Legs Syn...

Restless Legs Syndrome

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Think you are all amazing.

dojen profile image
7 Replies

Am I going crazy, just a baby, making a fuss???

I am a 75yr old lady who has RLS ever since I can remember. (Of course was always described a 'fidjet' before RLS was recognized.)

I have been following this site for a few years now but only occasionally contributing. Sorry about that but I never seemed to have anything new to add. My problem is simply that my body reacts horribly to all prescribed dopamine and epileptic agents. I simply cannot function on them. Clonazepam is the only drug that gives me night relief and some sleep. When I reach augmentation then I must come off for a couple of months with no replacement but pain killers. Is it all worth it I wonder.

Dojen

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dojen
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Pippins2 profile image
Pippins2

Hello Dojen, you certainly are not a baby! !! I have known strapping big macho men reduced to tears over this wretched condition. Just wanted to clear something up for you, you can't get augmentation from the Clonazepam. You can only get it from the Dopamine meds and EXTREMELY rarely from Tramadol. You could build a a tolerance to the Clonazepam so that it becomes less effective but not augmentation. Have a tried anything like Codeine or Tramadol? . Once a tolerance builds up to the Clonazepam taking a break for a month would usually be long enough to "reset " it. I am pleased that it is at least allowing you some sleep just now, Take care. .Pippins2 x

dojen profile image
dojen in reply to Pippins2

Hello Pippins2

Thank you for your very helpful and positive reply. I am glad you cleared up the augmentation subject. It has taken me a month to wean off patches (dopamine) followed by Pregabalina (Lyrica) both prescribed by a Neurologist. I will never again be persuaded to give drugs like this 'another try' I am going back on to Clonazepam for now and will talk to my GP about Codeine and Pramadol. Many thanks to others who replied too, you were all a great comfort. If anyone else has horrific side effects from prescribed meds your body is saying NO so please see your doctor, you are NOT making a fuss.

Best wishes all

Dojen xx

This is quite a debilitating condition with not only quite a bit of pain but the constant need to move when you are exhausted is dementing!

It unfortunately is a matter of trial and error where the drugs are concerned. I personally find the pain killers work best for me.

beady3 profile image
beady3

Sorry you are still having probs,it is hard going with rls because the lack of sleep and keep moving is exhausting ,I have had so many meds all working for a while but now on the patch and a Tramodol in 5 weeks I have had 2 bad nights so I am so pleased because I have had years and years or Missery ,Hopeyou find something soon x

Mopsy1950 profile image
Mopsy1950

Hi dojen. You sound a bit fed up ,I think we all have our down times ,,like you I was on clonazepam for quite a few years then all of a sudden it stopped working ,but at least I can take some of the dopamine tabs but don't like them augmentation sounds horrible ,,am hoping I can go back on clonazepam soon ,they say Tramadol is quite good ,one which I asked to go on ,,but they wanted to try some dopamine first, at the moment am on pramapexel which is working on one tab,, thankfully as I have just been in to have half knee replacement dreaded the thought of moving while they were operating but lucky no RLS at moment and yes it is worth it as hopefully they will come up with one tab for everyone so stay with it ,,leave you with a big hug stay in touch

I am new here and newly diagnosed with cramp fasciculation syndrome, I think that is the most severe end of restless legs syndrome.

I couldn't tolerate tramadol or codeine. I have just been started on clonazepam and gabapentin. It is only 4 days but last night, I slept for 6 hours and 40 minutes and only woke 11 times and was restless 22 times. This is a big improvement on 2 hours 12 minutes with 26 times awake and 35 time restless! I am praying that this isn't a fluke! My big goal in life is to fall asleep for 7 hours and not be restless at all :)

SLMCP profile image
SLMCP

Hi Dojen, I too have struggled over the years with these hard core drugs, with terrible side effects, so bad that I couldn't go on trying them.......... Have you tried Rotigotine patches? Good luck xx

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