Any thoughts here?: My husband was put... - Restless Legs Syn...

Restless Legs Syndrome

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Any thoughts here?

RCHD profile image
RCHD
10 Replies

My husband was put on GABApentin, stilnox and madopar. He only used madopar once. He’s afraid to continue it. Although he did notice last night his legs were more restless without it . This process is so frustrating as he’s been withdrawing from opiates since one month. Any feedback from anyone is helpful. Maneuva has been great 🙏🏾

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RCHD
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10 Replies

Your hubby is in a complex situation.

He may still be suffering opiate withdrawal.

Madopar (all other things being normal) improves RLS symptoms dramatically at first.

However, it has a very high risk.of augmentation. So if he is already suffering augmentation, then it may make that more persistent or make it worse.

It's not possible to say how long augmentation will take to dissipate.

By augmentation is meant

Symptoms are more intense

Start earlier in the day

Spread to other parts of the body.

Happen quicker.

These aspects will fade as the dopaminergic agent causing this is reduced and should stop once the agent has entirely left the body. About two weeks after stopping it.

This however doesn't mean that withdrawal effects don't happen at the same time. It might not be easy to say what is due to augmentation and what is due to withdrawals.

In addition, it may be even after augmentation and withdrawals have gone that your husband will still experience RLS symptoms.

If the gabapentin works, the symptoms may go entirely or might just be less.

If the gabapentin doesn't work then symptoms may be as bad as they were before starting any medication, or worse as time's gone by.

It can't really be known until augmentation and withdrawals have gone.

This also means that gabapentin isn't very good at counteracting augmentation or withdrawals.

Also note that it takes several weeks and a sufficient dose of gabapentin before it starts to fully work. A typical effective dose is 900mg.

Taking Madopar then is just complicating the picture.

Incidentally, just to clarify, be careful not to confuse the drug "gabapentin" with the neurotransmitter "GABA" (gamma aminobutyric acid). They are very different things, although, as you may guess, gabapentin's name is derived from GABA.

RCHD profile image
RCHD in reply to

Great and helpful !!! You are amazing !!!!

RCHD profile image
RCHD in reply to

Agree he’s still going through withdraws... not sure how many months it takes ... they had mistakenly put him of sifrol for 10 days during the withdrawal process, but he stopped it after 10 days because he knew it wasn’t helping. So that was 2 weeks ago.. so atleast we hope that’s not to be blamed for augmentation at this time any more.

Hopefully, to also treat augmentation your hubby has had blood tests for iron deficiency i.e. serum.iron, transferrin and ferritin.

For somebody with RLS the guidance is that if ferritin is below 75 then they should start on an oral iron supplement. Raising ferritin to 100 benefits 50% of people. Prescription supplements are not recommended.

If it's above 75 but below 200 it's more complicated.

See this link

sciencedirect.com/science/a...

It's true that the "heme" iron in meat is more easily absorbed than the "non heme" iron in.a vegetarian diet.

However, I've been vegetarian for 45 years and never suffered iron deficiency anaemia. Even following blood loss due to surgical infection. (Bleeding for 4 weeks). If I was ever tempted to eat animal matter ever again, I'd stick to chicken.

The point is how much iron you absorb is dependent on blood levels of iron whereas RLS is due to brain iron deficiency,

Hence if your blood levels are OK there is a hormone called hepcidin that limits iron absorption. Otherwise you'd get iron overload.

So even meat eaters can get brain iron deficiency and RLS.

There are things that can be done to increase iron absorption.

Vitamin V helps absorption, I always drink orange with a meal. If I take an iron supplement I have orange with that or a vitamin C tablet (at the same time).

If taking a supplement

take it 30 mins before or 3 hours after eating

take it once everyntwo days, not daily.

There are things that can inhibit iron absorption

Proton pump inhibitor antacids

H2 inhibitor antacids

Magnesium.

When withdrawing from a dopaminergic drug, withdrawal effects can be severe. An opiod can help at this stage. Codeine or tramadol are typical.

They're not good long term solutions however, they are relatively weak and may require relatively high doses.

In the long term, more potent low dose opioids are recommended.

RCHD profile image
RCHD in reply to

So how does one know if the iron in the brain is sufficient?

in reply to RCHD

That can't easily be done directly but it's known that serum ferritin levels are an indirect indicator of brain iron levels.

That is, it's beeen found that for somebody with RLS to have the same brain iron levels as somebody who doesn't have RLS, ferritin has to be at least 200.

Hence the blood test for serium ferritin and the guidance that if ferritin is less than 75 oral iron supplements can help etc.

This is the link again

sciencedirect.com/science/a...

Jasper3 profile image
Jasper3

I take Gabapentin for pain. So I'm unsure if it work for your conditions, but you could ask the Dr, or make a call to them and see? Xx

in reply to Jasper3

Gabapentin is one of the two classes of dugs recommended for the treatment of RLS and it's known to be effective.

Do you have RLS?

ziggypiggy profile image
ziggypiggy

Curious. Were the opiates he was using prescribed for his RLS? If so, were they working or not? If they were working why the change?Ive been using opiates long term for my RLS so I am always interested in other people's experience. Sorry to hear about his struggles. You're an Angel for being so involved in helping your husband manage his health. For some of us it's a very lonely undertaking.

RCHD profile image
RCHD in reply to ziggypiggy

They were not prescribed. He became addicted and they stopped working so he continued to up the dose... so that was the main issue.

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