SSRI withdrawal and RLS

[BAK524]

I'm 63 and have been on antidepressants of one type or another for over 30 years. I started on nortryptiline, switched to paxil, effexor, celexa, and have been on lexapro (escitalopram) for nearly two decades, About seven years ago, I developed RLS. It started gradually, and has increased in frequency. After learning that SSRIs can aggravate RLS, and no longer feeling depressed, I decided three years ago to get off the lexapro. (I had attempted this years earlier, and failed). I obtained the liquid version and oral syringes, and began a gradual taper, going from 10 mg to 2.8 mg over the the last three years. There have been some rough spots along the way ("brain zaps"), but about 5 months ago, I started to experience (simultaneously) paresthesia (creepy crawly sensations in my extremities), peripheral neuropathy, and a SIGNIFICANT increase in the RLS. Has anyone else experienced this? It is possible that the RLS symptoms are unrelated to the taper, but I believe they are connected. Why would tapering off the SSRI trigger my RLS?

[ziggypiggy]

Wow. That's an impressive weaning period of three years and more than enough time for your brain chemistry to adjust. But everyone is different.I've been on many many antidepressants and a great side benefit was it helped my neuropathy but aggravated RLS. Which is not uncommon. Sometimes I had to decide which one was worse and change dosages appropriately.

I feel your frustration on trying to suss out the culprit. So many variables can be at play.

So glad your depression petered out after 30 years. That's great to hear.

[Madlegs1]

Restless legs are a natural component of withdrawal. Any withdrawals.Unfortunately.

Well done on your progress, and good luck.

[Hidden]

Hello again.

Well done for weaning off the antidepressant.

OMG! The brain zaps! Been there! Three tee shirts!

I'm sorry to hear that you were taking antidpressants for so long. I'm not sure why that was. I hope you can manage without now and I do hope you were offered other therapies as well.

Antidepressants make RLS worse and have significant withdrawal effects, e.g. the brain zaps.

Usually what happens with drugs that cause dependency is that whatever they used to control will "resurge" when you wean off them.

As an example a withdrawal effect of a an anti-convulsant i.e. a drug used to control seizures may be seizures.

Sorry to apparently contradict Madlegs, but RLS will NOT be a withdrawal effect from an SSRI since SSRI's make RLS worse. Rather oddly then, you might say a withdrawal effect from an SSRI is an improvement in RLS.

It's just that normally "withdrawal effect" has negative connotations.

Since your RLS seemed to have got worse at a particular time, it may be that, (and Madlegs will agree) something at that time "triggered" your RLS, i.e. made it worse. I see you're aware of aggravating factors.

Then, if it's not SSRI withdrawal it sounds as if it's the neuropathy.

"Paraesthesia" is a symptom of neuropathy rather than RLS, but the creepy crawlies are RLS.

If the neuropathy has increased,then I'd expect the RLS to increase.

Obviously,I'm in no position to say this for100% sure.

My first thoughts on a remedy for this are that a) you could explore what could be done to improve the neuropathy b) you could explore what you could do to improve your RLS.

a) I'm no expert on neuropathy, but this is usually a matter of identifying the cause, reversing this if possible or taking steps to relieve the symptoms and/or consequences. This should have an effect on the RLS.

b) It may be worthwhile you undertaking a review of how you manage your RLS, starting from scratch, as it were, as if you'd just been diagnosed for the first time. This could mean that you may discover things you hadn't previously known about.

You may have already done this. Since I don't know, I won't give any detail, but in summary consider the following.

1) Iron therapy

2) Aggravating factors - drugs

3) Aggravating factors -other : Diet, inflammation, underlying conditions,

4) Non-pharmacological remedies

5) RLS medications.

As regards 5). I note you are taking gabapentin 900mg?

Gabapentin is used "off-label" for RLS,but is actually licensed for Epilepsy and peripheral neuropathic pain.

It seems then that you're already on an appropriate medication.

What may need adjusting is the dose and the schedule.

Dose : 900mg a day is possibly the minimum dose you'd expect to be effective for RLS. People do find they need more.

Schedule : In RLS this is weighted towards the evening i.e. main dose before bed and a lower dose earlier = 2 doses a day. For neuropathy, the schedule is usually 3 equal doses a day, morning, midday and night.

Perhaps you could review the gabapentin with your doctor.

[BAK524 in reply to Hidden]

Thanks for the detailed response Manerva. I had been taking 300-600mg gabapenitn for some time, with minimal effectiveness. I upped it to 900mg, and have timed the dosage according to your suggestion. So far no RLS for the last week, so it looks promising. It's unfortunate that my doctor is not knowledgable about these things. About the SSRI: I managed to get insurance to provide me with an appointment with a psychiatrist in a couple of weeks. We'll see what he has to say about all this. I have an unrelated question for you: Do we know what the long term effects are of gabapentin therapy? Websites like this kinda scare me: integrativewellnessgroup.co.... I will be pressing my doctor for a referral to a neurologist and talk about iron therapy, but for now, the gabapentin is providing some relief.

[Hidden in reply to BAK524]

Regarding your question about the long term use of gabapentin.

There is, as yet, no definitive answer to that because it is only a relatively recently used drug.

The only fairly well documented long term risks of gabapentin I've come across are irreversible visual problems. This seems to be fairly rare, at the moment

Most of the side effects are, I believe, reversible. That is, stop taking it and they diminish.

Some people on this site have reported some memory problems.

It's just my opinion but I think the web page you refer to is scaremongering.

I have quite a few reasons for saying that. If you want more detail, just ask.

Two things however stand out immediately.

One is that this is an advert for an organisation called Integrative Wellness Group trying to sell you their therapies. They are going to twist facts.

Two, in the Integrative Wellness Group web page they give one (and only one)reference to support their claim, Following up this reference leads to another organisations web page advertising their services, Wellness Resources. Luckily, this web site does give a reference to the study on which the claim is made.

This is chinese whispers.

However, the actual study is about the effect of pregnant mothers taking gabapentin on the developing brains of their babies. Hardly a death sentence!

It IS recommended that pregnant women do not take gabapentin.

[BAK524 in reply to Hidden]

Another question for you: Has any augmentation been observed with gabapentin?

[Hidden in reply to BAK524]

Some people have experienced augmentation as a result of gabapentin/pregabalin.

I have also read at least one study that reported "augmentation" rates in people taking gabapentin in comparison to dopamine agonists. (Much lower rates for gabapentin).

I have also read an article that suggested that in cases where people have apparently suffered augmentation with gabapentin, it has actually been "rebound" and not augmentation.

Other articles simply state, gabapentin doesn't cause augmentation at all.

Take your pick!

The only other thing I can add is that the full name for augmentation is "dopaminergic augmentation" and the literature just tends to miss that out.

There are a couple of theories why dopamine agonists cause dopaminergic augmentation. One is that they cause downregulation of D2 receptors, (the problem leading to RLS) The other is that they upregulate D1 receptors, which then "steal" dopamine from the D2 receptors.

I haven't yet found any explanation why gabapentin would cause augmentation, If it is augmentation, then it's not dopaminergic.

[elsie1920 in reply to Hidden]

Hi Hidden, regarding RLS and withdrawal, you are completely incorrect, and Madlegs is correct. While it is true that most antidepressants and other psych meds can cause and/or aggravate restless legs syndrome, withdrawal of many mind drugs can most definitely cause RLS, even for those who have never experienced it. I have tapered my SSRI several times in the past 20 years, and each time, my RLS gets much worse with each cut before it gets better. This also happened tapering benzos. It is well-known that opioid withdrawal is a huge trigger for RLS. Check out survivingantidepressants.org, Benzobuddies.org or any other withdrawal site. And my neurologist concurs. (I am also a psychiatric RN with much experience in psychiatric medication).

[amrob123 in reply to elsie1920]

You'll have no argument from me Elsie1920. Many people also experience RLS withdrawing from gabapentinoids, especially when they've been on them a while. However "Hidden" (also Manerva and Elffindoe) is no longer on the site, so you may well be shouting into the wind 😃

[martino]

I hope not. I started taking nortriptylene a couple of years ago with a bit of uncertainty as my Restless legs were ok. I have peripheral neuropathy which gives a lot of pain. I take Pregabelin and Tramulief and nortriptylene was suggested as a supplement. I realised that this could aggravate my legs but I have been ok with 30mg each evening.