An almost totally sleepless night

Well it is 6 am and I have been up most of the night. Saw my Dr yesterday and she gave me codeine at my request because the Tramadol although it reasonably felt with the RLS kept me awake all night. Well last night at 7 I took one codeine and 2 lyrica then at 8.30 took another codeine and one lyrica and for the first time in ages was able to watch some tv with my husband. Felt quite happy, went to bed and went to sleep immediately. 90 minutes later the legs woke me and that was that as far as sleep goes. I am absolutely exhausted. I was on Mirapexin for over 10 yrs and I know I was lucky because mostly it was brilliant. I don't think there is anything out there as good as Mirapexin. All my bloods came back good including the ferritin. Sorry to go on.

20 Replies

oldestnewest
  • Well Keiralee I will get right to the point. You just have to try iron, you just have to. It doesn't matter that your body stores of iron are normal, your brain iron stores are non-existent. I can't get into the details except to say that it works, not always, but a lot. And certainly enough such that it's worth a shot. You're miserable, and when you're miserable we're miserable. The iron has to be ferrous bisglycinate not ferrous sulfate. Brand names are Solgar Gentle Iron or Ferrochel. You have to take it on an EMPTY stomach before bed away from all other meds. And you can't eat for two hours after taking the iron but technically you should be fast asleep anyways. If you talk to your doctor about this maybe he will let you take two 25mg capsules of the ferrous bisglycinate to start with although many people do great with just one. During the day if you have symptoms you should try to tough it out and then give yourself relief at night with the iron. You can't or rather shouldn't also take iron during the day. It will mean that your night time dose will not be well absorbed. Also too complicated of a biochemical reaction to get into. Good luck and may the iron be with you. Peace!

  • If your doctor does allow you to take two tablets for a few days they have to be taken at the exact same time. That second pill just isn't well absorbed. You have to put a minimum of 24 hours between iron pills. Well that's it.

  • Going to +1 on the Gentle Iron. After having no control on the RLS I now get many more good nights than I did and I attribute it in good part to the Iron.

    As Oolong says our brain doesn't store it and its needed to move the Dopamine around, (post mortem results have shown an EXCESS of Dopamine in the brains of some RLS suffers lending credence to the Iron theory). See below for an article on Iron/RLS:

    ncbi.nlm.nih.gov/pmc/articl...

    I had a horrific time on the Mirapexin - messed with my thinking, very nasty in my experience.

    What dose of codeine are you taking? I think that if we can get to the symptoms before we experience them we can keep a better control so it might be worth playing around with the times of your dose to find the best time for you.

    Take care.

  • Thank you Rafts and Oolong for replying. The thing is only yesterday my Dr said to me I do not need iron. I have just had the blood test and everything was fine. The ferritin was 172 and there is no way she would give me iron. I went to bed at 6.45 this morning and RLS woke me at 8.3. 0 Never been this bad before don't know what's going on.

  • keiralee wow that is a really good ferritin level so you do not need any more iron in you, you store your iron well. It MIGHT have been that the codeine was not as strong as the tramadol, to find out you would have to stop the codeine and take the tramadol again.

  • Yes, then you do NOT need iron. Your ferritin is beautiful. Too MUCH iron is not a good thing either, iron overload IS a bad thing. So, no need for you to have to get your ferritin level up, it is way above the suggested level that the experts want us to be having. Mine is 152 after infusions, so iron is not my issue either. And, it never made a bit of difference in my RLS.

  • Thank you Elisse. I will go back to the Tramadol tonight just to see what happens. Very strange really because I have never had it so bad before. It's been most of the night and it woke me this morning after a very short sleep. It seems as though the codeine has actually made it worse. Is this possible.

  • The codeine will more than likely not make it worse, per se, it just did not work for YOU as well as the tramadol. Codeine does not do a thing for ME, but tramadol is "magic" for ME. :) And it seems your RLS was able to come back out. I assume you stopped the tramadol suddenly and started codeine. Your RLS said "Oh goody!" and came out to let you know it is there. The nickname for RLS in RLS circles is the "BEAST".

  • I havent heard of codeine making RLS worse, its a weak opiate but opiates normally work well for RLS, not make it worse. I know a few people who take codeine and it works for them. See what happens tonight when back on the tramadol. x

  • I have been taking codeine for at least two years. It does not help me, and getting off it is brutal. Am trying Cannabis oil at bed time now, not much help........

  • Are you trying cannabis oil, hemp oil, or CBD oil? You have to be careful getting the oil.

    Many CBD oils are made from industrial hemp and are totally worthless.

    CBD oil made from proper cannabis plants is better but it is only one of the cannabinoids missing THC and CBA among 85 active compounds.

    Cannabis oil extracted from cannabis containing all the 85 cannabinoids is very effective in my experience.

    Take care.

  • The whole ferritin level issue is not simple. Brain iron , blood iron and blood ferritin are all different. The role of Hepcidin is only beginning to be understood by specialists let alone general consultants.

    I have ferritin of 1200 but lowish blood iron- in my case the iron obviously does not get to wherever it's needed to regulate the Restless Legs.

    Dr B says it doesn't cross the blood brain barrier - so what does that say about ferritin level as a measure by which to prescribe even more iron?

    I think its dangerous for us to simply trot out - "oh , take iron and you'll be hunky dory" -- people die from iron overdose and overload.

    Ok - rant over!😤

  • If only it were that simple. It's great that iron bisglycinate works for some people but it definitely doesn't work for others, including me.

    I have taken it exactly as described, on an empty stomach and away from other meds and I still get RLS every night.

    I really hope it works for you keiralee.

    Good luck,

    Jools

  • Hi Jools I have no intention of taking iron. I recently had blood checked and it is fine. I agree with the majority - iron is not to be taken lightly.

  • Even though you say Tramadol keeps you awake, it does have some qualities that can do that, and is one side effect, it is usually a successful med for RLS. My feeling is to get the RLS as quiet as possible and you will at least be able to relax. Then, one can work on the insomnia. Usually after a while on Tramadol, your body will adjust and for ME, I would rather not be thrashing, even if I am awake. Will tell you I just started back on Tramadol, because of the "pain med crackdown" starting up in earnest in the US. Tramadol does not have a morphine component, and is a synthetic opiate, so the powers that be who want to tell our doctors how to treat us, seem to have no issues with the tramadol. So for ME, the tramadol is a solution to several different issues. :)

  • Well I went back to Tramadol last night and it stopped the RLS. Absolutely no comparison to Codeine. You are so right Nightdancer if I have to choose I will choose a sleepless night over RLS every time. At least I was lying down nice and warm and reasonably relaxed. Bit different to the previous night !

  • Good news keiralee, so it was that the codeine didnt cut it. not strong enough. If things get too bad from insomina then maybe i short acting sleep med from your doctor to be used just for some nights, but not every night.

  • I've been suffering terrible from RLS as early as 5 and 6pm. It's too early to be popping meds to help me sleep codeine doesn't cut it so my gp has reluctantly given me tramadol (I had a small addiction to it 10 years ago) whilst he writes to my neurologist to see if there are any other things I can take. The pain is so strong I rock constantly and am standing up and down and if I don't take tramadol my whole night is ruined as when I do take the other meds the pains too much. 1 tramadol is working at 6pm atm fingers crossed they'll find me a solution as my gp is reluctant to let me take it long term

  • Yes Tramadol does work for RLS No doubt about that. I take Lýrica as well and not sure about that one. Good luck hope your neurologist approves.

  • Unfortunately I was on the maximum dose of lyrica and it didn't work for me.

You may also like...