How long do L-dopa withdrawal symptom... - Restless Legs Syn...

Restless Legs Syndrome

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How long do L-dopa withdrawal symptoms last?

RoDomHarr
RoDomHarr

I took an over the counter L-dopa supplement (Macuna puriens) for a few months for my restless legs and then experienced augmentation and rebound. I stopped cold turkey a week ago and am experiencing withdrawal effects in the form of nervous system pain. Wondering how long it takes for the withdrawal symptoms to go away? I read worrying articles that they don’t in some cases

13 Replies
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Please excuse my ignorance, I misunderstood your earlier post.

I believe I understand now that you were taking a natural source of L Dopa and you believe it caused you augmentation.

Then you abruptly stopped it. Which is quite a dangerous thing to do.

I don't think that you should risk further complicating things by taking other "natural" sources of substances affecting dopamine levels, which I think you were considering.

You need to see a doctor, in the first instance a GP.

RoDomHarr
RoDomHarr in reply to Manerva

Hi.

I’ve seen the doctor and he said he can’t comment on a supplement but would usually advise to taper it over six weeks.

I’ve now gone a week cold turkey and came through the withdrawal for the day following a healing energy session but then last night my body was doing lots of involuntary movements and so I took a tablet and now I’ve woken up with the withdrawal symptoms (depression, aches). I’ve read that in 19% of cases people develop Dopamine Agonist Withdrawl Syndrome which is ongoing and there is no treatment which obviously has filled me with terror.

But I’ve had the experience yesterday of getting over it and wonder whether the return is because I went back on the tablet and my dopamine levels are oscillating. So wondering whether cold turkey might be better or is it that abrupt cessation actually could trigger something like DAWS and tapering is recommended.

Understand you’re not a health care professional and so can’t give advice, I’m just looking for more knowledge.

Manerva
Manerva in reply to RoDomHarr

Firstly, I'm not entirely sure that you can suffer full blown DAWS, partly because you haven't been taking a Dopamine Aonist. L Dopa is not a DA. Partly also because most people who suffer the severe form of DAWS are people who have had Impulse Control Disorder (ICD). From what you've previously written it doesn't appear you have ICD.

It doesn't sound as if your GP has been of help. Did he/she not offer any advice on how to manage your situation? Surely they had some idea about RLS. I can understand this if you just asked about the supplement. Otherwise not a particularly good GP as regards RLS.

I can only suggest, if this is the case, that you go back to the doctor to ask for help with your RLS and don't discuss the supplement.

If you want to manage this situation youself, you need to collect a lot more information.

It wasn't wise to go cold turkey. Once you had, it wasn't wise to take L Dopa again.

Once you'd stopped the L Dopa and got over withdrawal, it was inevitable that you'd get RLS symptoms. You need a PLAN, you need something to treat your RLS to replace the L Dopa.

I will write more later.

RoDomHarr
RoDomHarr in reply to Manerva

Thanks for what you shared so far. It is relieving.

Manerva
Manerva in reply to RoDomHarr

Part two -

Just to reiterate that a medical doctor will only give advice about medical treatment.

A couple of things that you could consider

Withdrawal effects from a dopaminergic agent (e.g. L Dopa) may last 10 days to 2 weeks usually. If it's not two weeks since you stopped the L Dopa then you may still be having withdrawal effects. These usually take the form of a worsening of the RLS symptoms.

Once you have got over the witdrawal phase, since nothing cures RLS, then you may find yourself in the same situation as you were before you started taking the L Dopa, possibly worse, as time has passed.

So it may be diffcult to say if any symptoms you have are due to withdrawals or that's how they are without any remedy.

Therre is evidence that it's best to plan dopaminergic withdrawal, whether that's L Dopa or a Dopamine Agonist, before stopping.

The plan includes

,

1 deciding by what incremental amounts you reduce the dose of L Dopa by and over what timescale.

2 deciding what you're going ro replace the L Dopa with and when to start takuing the replacement. This might be before you start reducing the L Dopa.

3 deciding what additional remedy you might need to take temporarily to get over withdrawal effects.

This may be easier for someone taking a dopamine agonist for RLS as tablets come in standard doses and can, if necessary be cut, to enable small reductions. I have no idea what form the L Dopa you've been taking comes in, do you know what dose it is, can you divide the dose up?

Also, if you accept that you need to take a medicine for your RLS then it's easier to find an alternative to the dopaminergic agent, that doesn't cause augmentation. Furthermore there are medicines that can help with the withdrawal.

I am reluctant to take drugs unnecessarily and for many people with mild RLS I believe, it's possible to use non medical remedies, but for many, like myself, the negative consequences of severe RLS are much greater than the consequences of taking a drug. I'm not personally aware of any non medical remedies that can help with withdrawal effects specifically.

There may be members on this site who can suggest various non medical remedies to you if you choose to continue avoiding medical treatment. In this, you will need to be fairly discerning because, some of the things suggested have their own risks or simply aren't effective long term.

As you've already discovered, although it's assumed that "natural" remedies are safe, they are largely untried, unregulated, possibly make RLS worse or can be harmful.

You may wish to try taking your L Dopa again, as before and then start to reduce it slowly, withdrawal effects will be less of a problem, but you still have no alternative.

If you choose to seek medical treatment then you will need to go back to your GP and ask for medical treatment, not advice about supplements. The GP may refer to you a neurologist Either way, unless you have a diagnosis of RLS recorded in your medical history, they will have to confirm that diagnosis and may carry out some blood tests.

Also, if you choose to seek medical treatment, they may be able to prescribe something to help you with withdrawal and prescfribe something to replace the L Dopa.

Do not let them prescribe a dopamne agonist. as, because you have already had augmentation, it may quickly happen again.

Here is a link to the UK national guidelines for the medical managment of RLS.

cks.nice.org.uk/restless-le...

RoDomHarr
RoDomHarr in reply to Manerva

Thanks again for this advice, it’s a real life line.

So if withdrawal is usual 10 days to two weeks I’m tempted to keep off them and see if I can ride out the symptoms as tapering just prolongs the augmentation effects.

I’d only not do that if acute cessation actually interrupts ongoing natural production. Do you know anything about this?

For others interested, I spoke to an expert in this space and he said that Uridine Monophspate one daily is good to boost D1 receptors, as is Praniravetam which modulates ceno choline uptake.

Also prebiotics and probiotics are helpful as that’s where dopamine is produced. He recommended natural stacks probiotics and mega spore probiotic.

Along with cold showers, intensive exercise, and intensive focus such as reading.

Ronan

Manerva
Manerva in reply to RoDomHarr

Of course, whatever suits you best.

I hope all goes well for you.

RoDomHarr
RoDomHarr in reply to Manerva

Your advice and care have been deeply welcomed.

Just an update spoke to a doctor friend who asked around and she said there wouldn’t be lasting damage from acute cessation. I’m 10 days in so feel like it’s worth it to push through.

Can I ask where you got that dopamine withdrawal take between 10 days and 2 weeks?

Manerva
Manerva in reply to RoDomHarr

It's what people on this site generally say. I did read it somewhere once, but can't recall where. That is an average I guess.

RoDomHarr
RoDomHarr in reply to Manerva

Hi, I’m now three weeks in. Severe depressive symptoms have gone but I’m still in significant withdrawal with fatigue, pain and depression.

I’m still trying to establish just how long this will take. I cannot find a reliable answer on this.

I read on addiction recovery sites that 90 days is a common time for dopamine to get back to normal levels after drug abuse but that’s with recreational drugs.

Is there any consensus view??

One factor interrupting natural dopamine production is sleep. I’m just not deeply sleeping, despite taking lots of CBD and using restiffic foot wraps (which help somewhat). I’m tempted to ask for a bento sleep aid but they are also addictive..

I am wondering whether taking an L-Tyrosine supplement might help in giving the body what it needs to make l-dopa.

Great if you and anyone else can respond. Feeling alone in this with little guidance.

P.s., my doctor is no use, I have been referred to a neurologist but earliest appointment time is Feb 22nd!

Manerva
Manerva in reply to RoDomHarr

Hello again, sorry to hear this.

Probably a more realistic answer to the question how long will withdrawal effects last is similar to the answer to the question, how long is a piece of string?

It may be that your withdrawal effects have now passed and what you're now experiencing is uncontrolled RLS.

If by "bento" you mean a benzodiazepine, then yes that might help in the short term. I've used Clonazepam in the past which is fairly popular for RLS sufferers, but if you take it for more than 4 weeks you can become dependent.

Sorry, I can't advise you about using supplements to raise dopamine levels.

RoDomHarr
RoDomHarr in reply to Manerva

So my RLS is relatively manageable, it’s the depression, fatigue, nervous system pain that’s the issue.

Manerva
Manerva in reply to RoDomHarr

I'm sorry you're struggling. Normally if someone is withdrawing from a dopaminergic agent I usually suggest starting on Gabapentin or Pregabalin before reducing and stopping the dopaminergic drug.

As well as helping with RLS symptoms, these are also used for anxiety and nerve pain. They can aid sleep. If insomnia is a significant problem then a benzodiazepine can help short term.

Some people also take an opiate to help manage withdrawal. Even taking over the counter paracetamol and codeine helps some people.

The only supplements I can think of that might give you some relief are magnesium for fatigue and nerves and either St Johns Wort or 5HTP which is a serotonin precursor., for depression.

Unfortunately SSRI drugs. which boost serotonin activity can make RLS worse. 5HTP might not, I don't know.

I have tried 5HTP, it didn't make my RLS worse, but it didn't do anything else either.

The only other suggestion I have, which I've found to be of help when things are bad is mindfulness meditation.

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