Gabapentin and night time waking

[VJ29]

HiI've had some wonderful advice on here previously so just returning for a bit more although I do follow the posts in here.

I'm on Gabapentin take 1800mg my RSL is ok in the day and mostly ok in the evening and when I get in bed to sleep.

But my RSL wakes me in the night and early morning so broken sleep. I manage to get back off with moving, massage gun etc.. but would like to eliminate this night time RSL. Would you hold back 600mg to when I wake up would that work not sure this medication works straight away or slower release? Or should I switch to pregabalin maybe?

Any ideas welcome.

[SueJohnson]

You could switch to pregabalin and then you could increase the pregabalin to see if that helps. It would be hard to increase the gabapentin since you are already taking it in 3 divided doses 2 hours apart. The advantage of pregabalin is you can take it all at one time. The equivalent dose is 300 pregabalin. Try increasing it 25 mg every couple of days. However I have a note that you were on pregabalin before and were going to increase it to 600 mg. If this doesn't help you need a low dose opioid like buprenorphine. I assume you are off the DA?

[VJ29 in reply to SueJohnson]

Hi SueThanks for your reply I can't actually remember if I went up to 600mg of pregabalin so maybe I'll try switching over to 300mg and increase as necessary providing the lovely! Gp's will agree who knows! Yes off the DA's I'm tempted to take the odd one mixed with gabapentin to see if it helps me get the odd night of sleep right through but guess that's a slippery slope if I do that. I'll also broach the buprenorphine with the GP at the same time as pregabalin. Can I also ask about slow iron I've got some 20mg is this classed as one dose I couldn't work it out from one of your recent posts.

Thanks do much

Val

[Munroist in reply to VJ29]

The iron tablets should say what a daily dose is on the bottle. I have tablets which are described as 20mg and also say they contain 20mg iron, which is 143% of the NRV (Nutrient Reference Value) which replaced RDA (Recommended Daily Amount). However sometimes the weight of the tablet doesn’t necessarily directly refer to the iron content so it’s important to read the manufacturer dosage recommendations.

[VJ29 in reply to Munroist]

Yes mine are the same so that's good that I'm taking correct dose. I need to speak to go and get my Ferritin checked I keep asking but they only do actual iron levels 😔

[SueJohnson in reply to VJ29]

Don't take the slow iron. It bypasses the area where it is absorbed.

[VJ29 in reply to SueJohnson]

Oh thanks Sue which iron is best please.

[SueJohnson in reply to VJ29]

Take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout, don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

Have you had your ferritin checked? If so, what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. You really should have it checked to know where your starting ferritin is and whether you really need to take iron. For example mine was over 500. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100.

[VJ29 in reply to SueJohnson]

Thank you Sue I'm going to push for the blood test they have done iron but not ferritin. It's gentle iron 20mg that I have not slow iron is this the correct one and dosage?

[SueJohnson in reply to VJ29]

Gentle iron is the iron bisglycinate so 50 to 75 mg is what you want if your ferritin is below 100. Until you know your ferritin 20 mg is fine.

[VJ29 in reply to SueJohnson]

Great Sue thanks so much again feel like I've got a plan for the iron and then will tackle change in meds if needed. Hate the confusion this horrible condition causes. Take careVal

[VJ29 in reply to SueJohnson]

Hi SueSo I've spoke to the GP and apparently my Ferritin in may 2022 was 70 first time a doctor has told me this despite asking several times. He did say it's in the normal level but I told him not for people with RSL ! So I have a starting point for raising it now👏 I hope I can do it with iron supplements as no point in discussing iron infusion with him if he thinks i have a normal level. Also asked about gabapentin and he said 900mg 3 times a day! Again explained that above 600mg at any one time it won't go into my system asked about pregabalin after going away for advice he came back and said I need to wean completely off the gabapentin before I can start the pregabalin. I know I don't need to do that from what you have said so lost the will to fight the point any further just said that would be a nightmare for me but he could only see it from coming off the meds not from the RSL side. Anyway I'm going to start on the iron and keep with the gabapentin this month and will look at your previous advice on taking iron. Thanks again your a star.

[Huntingleroy]

Im in the same boat as you really , days ,evenings are good , off to sleep well but its 2am now and this is 2nd time awake since 23.30. Sue suggests an opiate , dr wont prescribe so seeing a private guy in 3 weeks . Good luck

[VJ29 in reply to Huntingleroy]

Oh no I feel your pain yes I'm exactly the same was awake until 2am myself. Are you from the UK and if so which doctor are you seeing please.

[Huntingleroy in reply to VJ29]

Diagnosed by Dr Chaudri , london 20 yrs ago then moved to Dr Fackrell in Bath who just upped my dose . Waiting to see Dr Roswell Martin at Gloucester but just need an opiate really for the withdrawing but Gp wont give sadly

[VJ29 in reply to Huntingleroy]

Oh good luck hope the specialist listens to you

[marigold60]

Hi This may or may not help. I take less gabapentin than you but sometimes I wake in the night a bit twitchy I then take one or two hundred mgs. This helps me enormously and I can go back to sleep. If very occasionally I still have trouble I take one or two codemal tablets. I wonder whether it might help you if you split your doses so you take one in the night when you wake.

[VJ29 in reply to marigold60]

How much do you take please Marigold

[marigold60 in reply to VJ29]

At the moment I take 400mg a day in the evening along with an ibuprofen. I was once on 800mg but I managed to get it right down and at one time I was able to stop it altogether

[VJ29 in reply to marigold60]

That's good I do feel like I take a lot but think it's a standard dose what strength cocodomol do you take.

[marigold60 in reply to VJ29]

I take over the counter 8mg/500mg co-codemal. Not sure what a standard dose is of gabapentin, were you put on that dose straight away or did you find a lower dose didn't work?

[VJ29 in reply to marigold60]

Yes found it didn't work at lower dose. I'm going to stick it out a bit longer and look at taking the correct iron and take some gabapentin at night it all goes into a whirl when not sleeping doesn't it

[marigold60 in reply to VJ29]

I wish you well. I know what it's like not sleeping with rls, before I was on gabapentin I was on pramipexole and it was a nightmare to come off, no sleep at all! . Hope it works out for you

[VJ29 in reply to marigold60]

Thank you Marigold take care and I'll update once I know more about my iron ferritin levels as a starter

[Huntingleroy in reply to marigold60]

Ah thank you ,will try anything !