returning after 3 yrs

[paulamae]

It has been 3 yrs since I have written on here. In 3 yrs my RLS has gotten so much worse. Here in the USA, Dr's will not give a controlled drug for it, most treat you like your complaining about nothing.I changed Dr's, she put me on 600 mg twice a day of neurotin, it helps some.

[Hidden]

Hi,

when you say "controlled drug", I think you mean an opiate.

Neurontin, I.e. gabapentin IS a controlled drug.

It is unfortunate perhaps that it's difficult to get a prescription for an opiate as opiates are known to be effective for RLS.

However, as you know, it's easier to get a prescription for gabapentin, despite it being controlled AND, gabapentin can be effective for RLS.

It doesn't sound that you are satisfied with the gabapentin and this is probably because it appears you're simply not taking enough.

The commonly accepted effective dose of gabapentin for RLS is between 900 and 1200mg. For some people, more than this might be needed.

I also believe that gabapentin enacarbil (horizant) is better than neurontin. Unfortunately although this is available for you in the US, it isn't available in the UK.

Another tip, if you take 900mg total of neurontin, split it into 2 doses, one of 600mg 2 - 3 hours before bed and one of 300mg 2 - 3 hours before that. Strange as it might sound, due to the way in which it's absorbed, this might be more effective.

600mg, isn't enough!

[Whippetmama in reply to Hidden]

She may be in the process of titrating up

[Bajatom in reply to Hidden]

That is interesting Manerva. I take 600 mg at bedtime and get 5 to 6 hours restless sleep. On the nights I take a gentle iron supplement and an extra 100 mg Gabapentin at the same time, I get 6 to 7 hours of sleep while in bed an hour or so more than that. You suggest two half doses a couple hours BEFORE bedtime. My thought was at bedtime the dose will last thru the night while taking it a few hours before bedtime the effect would not last the night. I might add that my RLS is usually no problem when I go to bed. It kicks in and wakes me two hours after bedtime. What do you think? Should I give your dosing schedule a try?

[YodaDog in reply to Bajatom]

I think you should - I used to take 1200mg in two 600mg doses, I now manage on 3 x 300mg doses, so I think it is definitely worth 'playing' around a little to see if it does.

[Hidden in reply to Bajatom]

Firstly, taking the iron is not going to have anywhere an immediate effect on your sleep. The extra sleep you get is most likely entirely due to the extra gabapentin.

It sounds counterintuitive but you can get a better result from splitting the dose of gabapentin rather than taking it all at once.

This is because the proportion of gabapentin you take that's actually absorbed into your blood varies according to how much gabapentin you take.

You never absorb ALL the gabapentin you take only up to a maximum of 80%. That's for lower doses. The higher the dose, the lower the proportion of it that's absorbed.

So as an example, if you take 100mg, you absorb 80mg (80%). If you take 900mg, i.e. nine times as much, you only absorb 540mg (60%). You can see that although you've TAKEN 9 times as much, you've only ABSORBED 4 1/2 times as much.

Hence if you take a lower dose and wait for it all to be absorbed (about 3 hours), then take another dose, overall, you will absorb more of it than taking it all at once.

I have worked this out, that if you split a dose in this way then as the "half life" of gabapentin (the time taken for half of it to be eliminated) is 5 to 7 hours, then 3 hours after you take the second dose the totoal amount of gabapentin in your blood will be higher than if you'd taken the whole dose all at once.

However, the longer you separate the two doses, this less effective this "trick" will be.

Additionally, it will make more of a difference the larger the overall dose is. So it's probably not of any great benefit to split a dose less than 900mg.

If you want to split the dose 600mg and 100mg, I suggest you take the lower dose first.

[Ohh_GurL]

I thought this might be of interest to you. It's regarding Magnesium and RLS. Maybe it might be something to consider. Just a suggestion. 🙂 If you click on the link, scroll down to the broadcast on Jan 27, 2020. She talks a lot about RLS.

achieveradio.com/carolyn-de...

[Joolsg in reply to Ohh_GurL]

Don’t take magnesium 2 hours before or after neurontin or it will affect absorption. They interact.

[Buckem]

I have to agree with you about the Drs here in the U S. They will do anything but prescribe an opiate. I am currently going to a neurologist who is okay with opiates if you try everything else. Two weeks of iron and 150 mg of Pregabalin is my current daily. After that he wants to try a time release Gapapentin then pain pills. However it looks like my current pills are not working because it’s 3:15 A M here and l could not go to sleep if I had to !!!

[Hidden in reply to Buckem]

Just to say two weeks of iron, certainly if taken orally will probably have negligible effects on RLS. It depends on your ferritin level.

It would be most benefit to take iron long enough to get your ferritin up to at least 100mcg/L. This could take months.

Additionally, 150mg pregabalin may be insufficient for RLS. I believe it may be necessary to take up to 300mg.

I appreciate that some RLS specialists now recommend opiates as a first line treatment for RLS and it may be a shame that this is not yet widely accepted.

If you can't get a prescription for an opiate, it seems a good idea to give the currently accepted treatments a proper trial first before fighting to get an opiate.

[Buckem in reply to Hidden]

I really don’t want to use opiates to treat this but if it’s the only that works I will. However I just don’t understand why Drs simply refuse to prescribe them even after so many other treatments result in little or no relief. I get the whole addiction thing but in a way aren’t all meds addictive?

After reading many of the posts here I know many people are way worse off than me but I’m still working. The rapid progression of this is making it impossible for me to function. I did make the Neurologist aware of this which I’m sure might alter his normal approach to treatment. Fine with me!

Just want to add if Minerva isn’t a Dr. he/she should be. Makes more sense than my gp.

[Hidden in reply to Buckem]

"Addiction" is possibly often misunderstood. Not all meds are "addictive" and additionally, not all cause "dependency".

Meds that cause physiological dependency are ones that change you physiologically somehow. Once the change has occurred, you need to keep taking the med, otherwise you get withdrawal symptoms. Once the changes have reverted back to how you were before, (if ever) then the withdrawal effects fade.

Meds that don't cause physiological changes, don't cause dependency.

Dependency is part of addiction but there's more to addiction.

It;s a matter of degree but with some meds, they lose effectiveness and you have to take more, to get the same effect. This is called tolerance. The more you take, the greater the dependency, the worse the wihdrawals.

Dependency PLUS tolerance is more likely to lead to addiction.

Meds that have a psychoactive effect are even more likely to lead to addiction. Not only do you get the dependency PLUS tolerance, but they produce pleasure as well.

The term addiction is usually applied when the consequent effects of the med become harmful and the person loses control of their habit. It escalates and starts to affect "normal" behaviour.

Many addictive meds raise dopamine levels in particular parts of the brain, known commonly as the reward system. That is why some RLS meds i.e. dopamine agonists can cause addictive type behaviour, Impulse Control Disorder. This is a loss of control.

NOTE that some psychoactive meds do not cause physiological dependency, but they can cause pyschological dependency. They cause pleasure, which raises dopamine levels and it's the pleasurable effect that you come to depend on.

NOTE also, that not everything that causes dependency or even addiction is a medicine. Examples are Gambling Addiction, Gaming addiction, Shopping addiction or even falling in love.

Not all dependencies are harmful!

Opiates are some of the most likely meds to cause dependency, (both physiological and psychological) and cause tolerance and can be psychoactive. They CAN be dangerous in addiction. Legitimate "use" of an opiate can lead to "abuse". Abuse of opiates can, and does lead to fatalities. It's not inevitable however.

In oder to avoid all this complexity, I hope in the near future, research discovers exactly what it is about opiates that relieves RLS, maybe then a "safe" RLS med could be developed.

[Buckem in reply to Hidden]

Thanks for the explanation

[Hidden]

paulmae you were on a very high dose of Requip last time you posted and were augmenting badly, are you still on that very high dose.

[Hidden]

My apologies, I misread your post. You wrote 600mg TWICE a day, I didn't see the "twice".

If it's twice a day, I wonder when you take the doses. It's recommended that you take a 1/3 and 2/3 split, which would be 400mg and 800mg, not possible if you have 300mg capsules, hence 300mg earlier and 900mg later would be the nearest.

For best effect the time between them should be about 3 hours, could be longer, but certainly not morning and evening.

If you're experiencing symptoms earlier in the day and are taking a dopamine agonist, this may be augmentation. If very recently stopped taking a DA, may be withdrawals.

Hopefully, if you have stopped a DA then it won't be necessary to take anything in the morning.

[LanaCSR]

I see a lot of complaining about drs in US not prescribing opiates, which I totally understand because I live in the US. I only respond to all of this to hopefully help others in the US suffering from RLS by letting you know that if you want opiates, all you have to do is request a referral from your doctor to a pain doctor. They are the ones who can prescribe opiates. They have helped me when my neurologist ran out of options for me. I hope this helps others suffering from this miserable disease. Good luck all!! I wish the best for all of us!