I have slept 2 hrs with a sleeping tablet and here I am again walking around my lounge desperately wanting to sleep. Usually a sleeping tablet will keep me asleep 4/5 hours but sometimes like tonight it doesn’t work. I know it doesn’t cure RLS but at least I get a bit more sleep even if a bit drowsy the next day and I do this every 7 to 10 days.
I have tried everything and not found a solution. The only thing that works SOMETIMES is heat but not most of the time.
Went to GP Thursday - given up on Neurologist who gave me Sifrol O.18 mgs which didn’t work. He the prescribed à doubled dose which mad things worse - started getting RLS daytime, evening and night instead of just late evening and night, I woke every hour and had mood changes in that I reacted to things in a very aggressive and unlike me, way - and so on my return visit he said to go back to smaller dose. So I stopped it as no Point taking something that’s not doing any good. Visibly Neurologist not that interested. After explaining this to GP he then went to great lengths to tell me one has to keep increasing dosage until you find right one. I’m not going down that road. The Neurologist was a last resort as I knew about the terrible side effects of these medicaments which I wanted to avoid. I’ve tried just about everything except acupuncture which I was thinking of trying but have read the experiences of people on the forum and the overlying conclusion is it doesn’t work.
I am getting depressed about this as I am trying to prepare to move at 75 and am doing it alone. I just don’t have the energy because I am so very tired.
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Bruxelles
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Hello Bruxelles, sorry to hear about your situation and what you are experiencing with your GP and neurologist, and also sorry that you've not had any replies yet. Anyway, can you provide more of your story i.e. have you had your blood iron (ferritin, haemoglobin, saturation) levels checked? What were the figures? What medications do you take (list them all, not just RLS ones)? What RLS meds have you tried in the past?
Have you tried either gabapentin or pregabalin. If you're in the UK then these are now regarded as first line treatments for RLS and in many people's opinion including mine are more favourable than the traditional DAs.
Maybe Manerva will reply when he gets time, but you could go through different people's questions on here and just look for his replies. He is a fountain of knowledge and many of his replies will be relevant to you. He also provides links to UK national guidance on the treatment of RLS which clearly state that gabapentinoids are now the preferred treatment rather than DAs. Good luck.
Not sleeping is a real pain in the ass! I was able with the help from my family doc (not my neurologist or psychiatrist) who got me in small .25 ropinerole three times during the day, morning , noon and night and then switching to gabapentin for night time. I also found out from a night spent with severe kidney stone attacks that morphine stops the rls dead in it's tracks. I take 15mg ms contin (low dose morphine spread out during the day and again going to bed and after 3 yrs of not sleeping more that 2 or 3 hrs a night I am feeling and sleeping almost back to normal. Was going to jump off a building but decided not to. Hang in there, there are solutions just don't give up
Thank you so much for your reply. Sorry not answered sooner but been having probs with Internet connection.When I started having this problem about 3 yrs ago I was still working part-time which meant standing a lot of the time. I would get it from time to time which I could cope with even if working the next day. I thought it would get better when I stopped working 2 yrs ago, instead of which it got worse and very quickly I was getting it every night. I tried evrything I could think of like Vit B., Magnesium, Vit D, Iron tabs, Restific, hot and cold showers on legs, foot bath with massager, Cannabis oil, walking more/walking less, think that’s it.
Yes My levels were checked. My haemoglobin has always been low - I think it was around 12 and my Ferritin a bit over 100. Sorry, can’t remember exactly.What do you mean by saturation?
The Neurologist tried a combination of Vits C, E and Iron massive dose of about 450mg (can’t remember now). Also very cold leg shower for 10 minutes with a strong jet before bed. The cold shower made my legs incredibly painful and so I stopped those. I’d did that for 3 months then had to go back. As I had no improvement he then prescribed Sifrol 0.28mg for 3 months which he doubled after 3 months as I had no improvement. This made the RLS worse - I started getting rls in the daytime, evening and night instead of just at night. When I returned the Neurologist then told me to go back to 0.28mg.
Other meds at that time were Tegretol (Carbamazapine) 700mg/day taken in 2 doses (300mg morning and 400mg evening) which I have been taking since I was 39 and I’m now 75. This was for Focal Petit Mal which I developed after my ex husband banged my head against the wall. Also was taking Progynova 2mg, treatment for allergies in summer - Ventolin inhaler, Relvar inhaler which I used intermittently as it has Cortisone in it. It’s a preventative and I use it for several nights then stop until I find the Ventolin isn’t sufficient, antihistamine tablet. I try to avoid the antihistamine tabs and just treat the allergies locally with inhalers. I do use the Ventolin sometimes in winter. I wanted to have a desensitising treatment but the specialist said I was allergic to so many things it would be difficult to make one up. I had had one years ago and it was successful for several years. Next year I am going to see someone else, hoping they can make something up for the main allergens. It is at its worse in Spring. As I am moving (hopefully I’ll wade through all this ‘stuff’!!!) I am waiting to see what allergies I will have in a different environment.
Coming back to the Neurologist: I initially went to him asking for something that would treat the rls and the Petit Mal epilepsy as I didn’t want to take the anti Parkinson’s drugs and I knew about the Gabapintin.
He weaned me off the Tegretol but at my last visit I reminded him about this and he quickly wrote a prescription which I didn’t look at until I went to chemist and I then discovered he’d given me Keppra lévétiracétam and not Gabapentin.
I felt very rushed during the visit and that as this Neuro is at the end of his career, he wasn’t really interested.
Last Thursday I went to my GP and asked him for the Gabapentin but he said the Neurologist was more knowledgeable in that field and gave me a repeat prescription for Keppra.
Incidentally since I no longer take the Tegretol my rls sensations have changedslightly.
I am VERY stressed at the moment because of this house move and I wonder if that doesn’t exacerbate things.
I do find keeping my legs very warm helps to a certain extent but I still get RLS in the night and sometimes the heat makes it worse.
Forgot to say, I also have rheumatism in my hands and take Ibuprofen. I’m not one for pill popping and do have a high pain threshold so only take when absolutely unbearable. Sometimes I take a Paracetamol.How are you?
So sorry to hear you are having it so tough Bruxelles. I actually was living in Brussels when I first got RLS. It is likely it was triggered by chronic anaemia which I suffered from at the time. But hell who knows? We r all guessing here!! I know exactly what you are going through ....Sifrol nearly sent me to the asylum. I came off Sifrol cold turkey early Oct. Tough but I did it....with the help of a good acupuncturist with a holistic approach and targeting specific sleep disorder. I would come from her and sleep several hours. ..i dont give advice coz we are alk different. I went to acupuncturist for 10 sessions in 2 months. She helped me while I changed lifestyle removing anything I thought might be encouraging the RLS. Here I am today no medication, no acupuncturist, and result is I sleep, but it's very broken...usually goes like 1,5 hrs , up and stretch, 1hr, up and stretch, 1/2 he up 3 hours watching tv or cleaning, + 3 hours sleep. I'm getting sleep and its been like this month. On SIFROL, I was awake every half hour and restless during the day too. It felt like electric shocks going thru my body. No longer thank God. Best of luck to you. You are not alone.
Thanks so much for your reply. I have written a long reply to Yoda dog who asked me for more information. I started there as that was the first reply in. Would you mind if I didn’t write it all again as it takes so long and hurts my fingers (rheumatism) and reading that reply. Thanks. How are you doing? You are perhaps more positive than me as you motivate yourself to do ironing in the night!
You mention that you take a sleeping pill. Would you give it’s name please? I’m searching every possible corner of the world to find non narcotic help for my ongoing sleep deprivation that is ruining my life. I also am fighting RLS or PLMD all day every day. I seldom go to bed because the jerking has taken over my entire body. I have not received much attention so I piggybacked on to you, I hope you don’t mind.
Sorry for not getting back to you sooner. Been having big probs with Internet perhaps because more people using at the moment.The sleeping pill I take is Dormonoct (Noprazolone). I don’t take them every night as I don’t want to develop a dependency. I don’t have a problem going to sleep but staying asleep as my legs wake me. As I am not used to taking them I find half a tablet is enough but only gives me 5 hrs sleep max. A whole tablet may keep me asleep longer perhaps. I take it about half to one hour before I go to bed. The sleep is not the same as natural sleep and I still feel really tired in afternoon. I try to take it quite early as I don’t want the muzzy feeling these things leave the next day. I have also taken Staurodorm (Flurazepam) which I prefer but can’t get at moment.I take a tablet every few nights, not every night.
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Any one with severe restless legs?
Pramipexole not working now. 
Back to square one...an update.
Thank you one and all!
Just one glass=no sleep!
