I can't seem to get off my SSRI - Restless Legs Syn...

Restless Legs Syndrome

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I can't seem to get off my SSRI

BAK524 profile image
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I have tried weaning off Lexapro extremely gradually, over a 3 year period, going from 10mg to 3mg. RLS seemed to gradually worsen during this time, especially during the last 6 months. It seemed that the SSRI and RLS were unrelated. Six weeks ago, I received a job promotion, and was suddenly hit by crippling anxiety, worse than anything I have ever experienced. It has gone from an initial level10 to a level 5-6, but still quite uncomfortable. Very poor sleep and loss of appetite. I had a consultation with a psychiatrist that I've worked with in the past, and he told me I need to go back up to 10 mg. I did for 3 consecutive nights, and the anxiety nearly vanished, I slept a little better, and my appetite improved. Then on day 4, I felt that unpleasant buzzing electricity in my leg during the day, all day, which I've never had before, and I thought it's true what is reported, that SSRIs exacerbate RLS. I meet with the psychiatrist in a couple of days to discuss. I am currently in week one of 150mg pregabalin, after 1,200 mg failed, which is giving me some relief at night. Also taking 25 mg trazodone. I am wondering, am I doomed ? Is it possible to continue for life on my SSRI and successfully control (medicate) the RLS?

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16 Replies
Elffindoe profile image
Elffindoe

Sorry to hear of your dilemma.

I can't offer any easy quick fix solutions, but I have a few ideas you can think about.

I can understand being anxious with any major changes in life such as starting a new job. You do however seem particulatly vulnerable to this.

I wonder then if your psychistrist has ever offered you anything but drugs. They mask symptoms only, not deal with underlying causes.

It's possible that some psychiatrists still believe in the myth of the "chemical imbalance" model of anxiety/depression.

Most antidepressants make RLS worse. Other members may suggest some antidepressants are better for RLS, but I don't believe that is necessarily a solution since these may not be particularly effective for anxiety/depression.

Typically trazadone is suggested, but it's better known as a sleeping aid and I note you're already using that anyway.

Another suggested is buproprion, but I don't know if that's available where you live.

I read a very good blog post from the RLS foundation that said that if your need for an antidepressant is great, i.e. greater than your need for RLS relief, then you should take an effective antidepressant. Citalopram or sertraline were recommended.

These will make RLS worse. In my experience not perhaps as much as others.

You will then need yo try to compensate for this with increased RLS control.

It's important then to follow recommendations for iron treatment.

I think you mean you have switched from 1200mg to 150mg pregabalin.

Firstly, 1200mg gabapentin is equivalent to 200mg pregabalin, so you have actually reduced the ligand.

At 150mg pregabalin there is scope for further increase. The max is 450mg.

I'm afraid there seems to be no perfect solution for you. It's always going to ge a compromise. You may be able to find a level of anxiety you can manage with a level of RLS you can manage. It may not be possible to totally eliminate both.

BAK524 profile image
BAK524 in reply to Elffindoe

Thanks you for the response and guidance Elffindoe. I appreciate hearing from you. I have wondered often about the biochemistry of depression and what is really going on. I am convinced that some people (like myself) are born into this world more vulnerable, with more fragile nervous systems, and damage occurs easier from trauma. Resiliency is a splendid quality, but I believe that some of us just don't have it. Yes, I need to weigh the anxiety vs the RLS, and right now the anxiety won. I posed my dilemma in an email to Dr. Buchfuhrer, and he quickly responded: "Typically, we treat around antidepressants like Lexapro that worsen RLS when they are necessary to control anxiety or depression." He mentioned there is an increase in wiggle room with the pregabalin, gently dismissed adding a dopamine agonist, and suggested a low dose opioid. I'll have to see how this plays out in the coming weeks. I have an unrelated question about the pregabalin. Any thoughts on breaking up doses in two hour increments, the way you have suggested for gabapentin (Two hours before bed, and then bedtime)? I'm wondering if it will help me sleep later. (Also I'm awaiting a phone call to schedule an iron infusion).

Elffindoe profile image
Elffindoe in reply to BAK524

There should be no need to split the dose of pregabalin.

The reason for splitting the dose of gabapentin is because of it's variable absorption properties, between 80% at lower doses to 20% at high doses.

Pregabalin's absorption ratio does not vary. It's 90% no matter the dose.

It is true that some people may be more "vulnerable" than others and have less resilience,but there is nothing to say that resilience can't be improved and there's nothing to say that coping strategies can't be learned.

It seems there may be many ignorant pychiatrists about. Not offering any alternative to drugs is irresponsible.

Nellies47 profile image
Nellies47

Hi.I had same problem last year. I thought my RLS was due to SSRI, I'm on cipramil.

I couldn't get off them, so anxious and electric shocks in my limbs too. Saw a psychiatrist and she told me that it wasn't ssri causing RLS as it came long after SSRI started. So I am taking them all the time again and RLS no change either way.

She told me there was no reason to stop them, that they are safe long term. Hope she is right.

Elffindoe profile image
Elffindoe in reply to Nellies47

She's wrong!

SSRIs do not CAUSE RLS, that's why your RLS existed before taking the SSRI.

However they do EXACERBATE RLS, i.e. make it worse

read what this link says about antidpressants. Look under the heading " Role of Medications in Causing or Worsening RLS"

mayoclinicproceedings.org/a...

The psychiatrist should stick to her speciality, she obviously knows nothing about RLS.

If you're continuing taking your SSRI thinking it will have no effect on your RLS, then I'm afraid you've been mislead

If you wish to continue the SSRI then you need to be aware that your RLS WILL be worse than if you weren't taking it.

This may mean you have to increase your RLS meds

OR

stop the SSRI.

Neither do I believe they are safe long term. It's generally recommended that they only be used for some months whilst other therapies can be accessed.

Sillylily profile image
Sillylily

Have you heard of Transcranial magnetic stimulation (TMS)? After 13 years with moderate to severe depression and anxiety I was able to get TMS. I went into it desperate but believing that it wouldn't do anything for me. Thankfully it did work. I haven't been on any medication for anxiety nor depression since December 2018. It might be worth your while to look into it.

BAK524 profile image
BAK524 in reply to Sillylily

Yes some members have posted on it before, reporting positive results. I've read a little about it but have never looked for it locally, how expensive it is, etc. I think it's mostly used for depression that doesn't respond to other approaches?

Sillylily profile image
Sillylily in reply to BAK524

In my case, the insurance covered it because I could not tolerate the RLS exacerbation of the antidepressants. Side note, I noticed a vast improvement in the anxiety reduction well before I did the depression.

Greenseagirl profile image
Greenseagirl

Anxiety like you describe is an extremely common SSRI withdrawal symptom & the fact it disappeared so quickly when you reinstated bears that out. There is a great deal of evidence that a very slow tapering method called hyperbolic tapering is the safest way to reduce dose to avoid withdrawal reactions. See website Survivingantidepressants.org or books like Prof Joanna Moncrieff’s book, A Straight Talking Introduction to Psychiatric Drugs. Lots of evidence now emerging that many people are experiencing withdrawal but it’s being misdiagnosed as relapse or a new psychological problem.

Elffindoe profile image
Elffindoe in reply to Greenseagirl

Thanks for this. That's what I experienced myself some years back I withdrew from citalopram. In fact I did it quite slowly, but experienced the brain zaps etc.

I saw a doctor who arrogantly told me "there is no such thing as withdrawal effects from citalopram". He insisted I start back on mirtazepine.

I went along with this because of my complex circumstances at that time, if circumstances had been different I wouldn't have.

The memory makes me angry.

Shortly after starting the mirtazepine, my RLS, which had never been anythbing but mild became severe and I ended up seeing a neurologist, prescribed a dopamine agonist and went through years of probably unnecessary suffering.

This same doctor once told me I didn't have a pain, I couldn't possibly have!

BAK524 profile image
BAK524 in reply to Greenseagirl

Yes I have visited that website many times and am a member. The tapering that I did was extremely gradual: from 10 mg to 3 mg over a period of three years. I thought that with a such a slow approach, I would be successful. I tend to be an anxious personality type. I was diagnosed with panic disorder in 1991.

Greenseagirl profile image
Greenseagirl in reply to BAK524

Glad you’re aware of the whole withdrawal issue, sounds like you had access to good info re just how slow slow needs to be, esp as the dose gets lower. I hope you’ve had the chance to explore your anxiety in some talking therapy at some point, as no-one need be destined to be anxious for life (am a psychotherapist so will admit I’m biased toward a ‘what happened to you’ approach rather than what’s wrong with you’), appreciate I know nothing of your situation.

Greenseagirl profile image
Greenseagirl

It's too common a story, not surprised it makes you angry. It's great that now even the Royal College of Psychiatrists has recognised the issue and published a leaflet that patients can take to their prescriber: rcpsych.ac.uk/mental-health...

murano profile image
murano

Hi you cant get off those now your symptoms will come back worse than before i am also stuck on something similar even cutting the smallest bit night mares come .My brother went through hell trying to get off those he felt like killing himself about five times a day .You cant play with antidepressants your brain doesnt like it .They dont tell you when you take these pills that its impossible to get off without going through hell .Goodluck .

BAK524 profile image
BAK524 in reply to murano

Yes it's like making a deal with the devil. I'm ready to accept that I will be on this med for life.

murano profile image
murano in reply to BAK524

Yes for your mental health best thing to do i wish doctors would advise people not to stay on these drugs too long and ease off slowly other wise the brain says hey your not doing this and symptoms come back tenfold .Good you realise this .

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