I have severe rls and suffer augmentation.
I am trying to slowly wean off sifrol and have been taking 400mg gabapentan.I take 30mg codeine in early hours of each morning(1-3am)to ease rls and help me go back tap sleep.I also have fibromyalgia.My sleep specialist wants me to start endep to help my sleep and pain from fibro.Research on this forum strongly suggests that endep WILL make my symptoms worse!
What do members here think…..should I take endep?
It is so difficult to know what to do.
No - I wouldn't take it. For sleep, take ativan. for pain, gabapentin is best or more codeine. 30 mg is just a starting dose.
Thank you Sue for your advice.Specialist suggested I trial it for two weeks but Idont think I could cope with worse symptoms than I have already!Isn’t there a major interaction between codeine and Ativan?
Would it be safe to take them 2-3 hours apart??
Good point - I should have caught that. No - it would not be safe to take them 2 - 3 hours apart since ativan has a half life of 12 hours. You could take OTC L-tryptophan, or just increase the gabapentin since that helps with both pain and sleeping. I would increase by 100 mg every couple of days. Take it 1 to 2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Since you are still weaning off Sifrol, it will be less effective until you are off Sifrol for a few weeks at which point you could try reducing by 100 mg every couple of days to find the dose that is enough to control your symptoms, According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." On the Endep. although it exacerbates symptoms for many, not everyone experiences this, so you could try it, but you would probably find out the first night whether that is true. No reason to try it for 2 weeks. Have you had your ferritin tested?
2 months ago my iron levels ( in morning after fasting) were.....ferritin 174....iron 11...transferrin 2.7....transferrin saturation 16%One night recently I had half a diazepam at 10pm and then 1 panadeine forte(30mg codeine) at 4am and I was fine!
Your ferritin seems fine enough, according to the Johns Hopkins researchers and the updated guidelines for the treatment of RLS. However, your transferrin saturation is not. I think that both JH and in the guidelines they do mention that low saturation (below 20%) is maybe even more indicative of too low brain iron than ferritin is. Get and print the info and discuss with your gp or haematologist. Did you already take oral iron?
Thanks Lotte, I am in Australia so hopefully can access John Hopkins info.I stopped taking iron supplements 2 weeks before I had that test so that I would get an accurate result.
I have not restarted taking any oral iron as my ferritin level was quite good.
My sleep specialist, who was recommended to me because he supposedly ‘understands’ RLS, said he was happy with my ferritin level but never commented on saturation level!
He also wants me to try endep!
He is, however , encouraging me to wean off sifrol and willingly prescribed codeine.
Have a look at what the updated guidelines in the Mayo Clinic Proceedings say about iron and specifically (in the text) about iron/transferrin saturation. If not there, let me know and I shall try to hunt down where I got it from. If in the updated guidelines, highlight the part and send to and discuss with your neurologist.
I checked the Mayo Algorithm and can't find anything about transferrin saturation. I did find this which is outdated Https://chiro.org/Graphics_Box_ALT-MED/FULL/Restless_Legs_Syndrome.pdf However it mentions "Serum ferritin of less than 50 ng/mL or iron saturation of less than 16 percent is diagnostic for iron-deficiency associated RLS. 60 Iron replacement in RLS has not been shown to be effective when ferritin levels are above 50 ng/mL" I know I have seen the 20% somewhere but can't find it now, If you do find it let me know.
I agree with LottieM.
Thank u Sue(and Lotte) I will do some research.My husband (who has multiple myeloma) is seeing his blood specialist next week.I will take the opportunity to sneak in a question about my ferritin saturation level then.
Will let u both know what he says.
I mean transferrin saturation……..want blood specialist to know that I am well informed so he won’t dismiss me.I will also download somerelevant info ( if we can find it)
I have 2 profiles( no idea why!)Slipslopslap and Retired Lady
No dont take it-is Amitriptyline (Endep) makes RLS worse fir the vast majority of sufferers. I was prescribed it whilst weaning of a Dopamine Agonist and was suicidal as the RLS was the most severe I had ever encountered. My mother was prescribed it and just 10mg was enough to send her half crazy for 3 days .-Pipps
Thank u so much for the warning
Endep is not a good medication for RLS... you would be better to increase the Gabapentin or change to Pregabalin. Also, a two week trial of Endep is not sufficient time to allow it to build up to a therapeutic dose in your body. There are much better drugs available than Endep which is very old and now rarely used in psychiatry when years ago its main use was to treat depression.
My sleep specialist was prescribing it to relieve my fibromyalgia symptoms.I have definitely decided not to start taking it.
Thanks for your feedback.. this forum is such a great support for all RLS sufferers.
Hi, I am a retired lady also in Aus having the same problems with relentless rls. ( are you in melb)?My new neurologist also suggested endep for my rls as he said it helps his!!
Like you I don’t want to make things worse so I never started , and obviously can’t continue to see him if I disregard his advice,
So frustrating not being able to find a dr who understands 😊
My gp suggests sifrol
Codeine sometimes settles it
Yes, I am in Melbourne too!I have tried to message u but it won’t work for me!
Have you tried through the chat icon top of page?If it doesn’t work I can give you my details on messenger
Would be nice to keep in touch🙂
recent worsening of RLS
bad start to 2017 pt/2
Results of 6 month personal recording of RLS
RLS back again
RLS SEVERE
