Guidance required

[Timetodance]

I withdrew slowly from taking 2.5 mg zyprexa in June 2018 after taking it for 16 years. Terrible drug to get off. Now have developed either temporary tardive dyskinesia or restless leg syndrome. Will this resolve itself naturally. Also have terrible sleep problems. Now very scared of prescribed medication. Any suggestions on what I can do or take would be appreciated.

[Madlegs1]

Rls is a natural symptom of any withdrawal process.

From what I've read, zyprexa does not cause rls commonly.

If you have gone off the zyprexa slowly, then you shouldn't be suffering rls too much .

I'm putting up a link to a paper that may be of interest to you., I hope it will help.

ncbi.nlm.nih.gov/pmc/articl...

All the best. I can't comment on the dyskenesia. Sorry.

[Timetodance]

Thanks Madlegs1, I will go in and read the paper u have suggested.

[Hidden]

Hi, sorry to contradict Madlegs, and I find this strange. I read that zyprexa is a dopamine ANTagonist and blocks dopamine receptors and therfeore it might actually cause RLS or Parkinsons symptoms in people who don't normally have them.

I do recall that some decades ago, less developed anti-psychotic agents did lower dopamine levels to the extent that users had to take additional medication to counteract the parkinsons symptoms.

The article that Madlegs refers to confirms this, i.e. dopamine antagonists such as zyprexa or clozapine DO cause RLS. Thanks Madlegs.

What's strange then is that you should develop RLS symptoms when you've stopped taking zyprexa and didn't have RLS when you were taking it. This appears to be the wrong way round.

Since you've just stopped taking a dopamine antagonist it would be inappropriate to take a dopamine agonist for RLS as your dopamine receptor sites should be being more active anyway.

It would appear then that Gabapentin would be a useful medication as it doesn't directly interfere with dopamine receptors.

Tardive dyskinesia, again is a side effect of the long term use of Zyprexa, so again, if what you're experiencing is tardive dyskinesia, it's strange since you should have experienced it when taking Zyprexa, not just after you've stopped. Although, if you did have it when you were taking the Zyprexa, you will continue to have it after stopping.

However, I do read that the symptoms you describe e.g. sleeplessness and restlessness are withdrawal symptoms for Zyprexa. The restlessness you're experiencing may be general restlessness rather than RLS as such. If so, these symptoms will subside.

So, it is possible that you're experiencing general withdrawal symptoms and they may fade. If you gave a more detailed description of your symptoms, it might be easier to say if you have either of these conditions.

[Madlegs1 in reply to Hidden]

Zyprexa comes up in research as being not a major cause of rls.😎

Of course, it does cause it in some cases.

[Hidden in reply to Madlegs1]

Thanks Madlegs, I haven't read that. The article you referred to says that a similar anti-psychotic DOES cause RLS.

Logically if Zyprexa is a dopamine antagonist then it has the opposite effect of a dopamine agonist so I'm surprised that it's not a major cause of RLS if not Parkinsons. Certainly for anti-psychotic drugs used in the 70's and early 80's iatrogenic Parkinson symptoms was a major problem.

You could tell if someone was taking them by the way they walked!!!!

Things have improved since.

[Madlegs1 in reply to Hidden]

I don't know if this is helpful.

"Restless leg syndrome (RLS) is a common disorder associated with significant distress. We report three cases of drug induced RLS caused by olanzapine. In each case, RLS commenced after initiation of treatment with olanzapine and resolved after ceasing olanzapine. All three patients were subsequently treated with other atypical antipsychotics, risperidone, quetiapine or aripiprazole, without re-emergence of RLS. RLS is associated with central dopaminergic dysfunction. Dopamine agonists and L-dopa reduce the symptoms of RLS, and some agents that block the dopaminergic system aggravate RLS. Greater awareness of potential causes of RLS, and its differentiation from akathisia and illness related agitation might help in reducing the distress associated with it and improving patient compliance."

[Hidden in reply to Madlegs1]

Yep, that's great thanks. The thing about Timetodance is that apparently the symptoms Timetodance thought might be RLS started AFTER stopping Olanzepine rather than the other way round.

I'm not convinced, from Timetodance's description that this is RLS in any event.

An interesting debate anyway.

Perhaps being a linguistic philosopher in a previous life, saying dopamine antagonist antipsychotics are not a major cause of RLS is not the same as saying most people who take them don't get RLS symptoms. Not everyone who has RLS takes dopamine antagonist antipsychotics.

Not all antipsychotics are dopamine antagonists, so wouldn't be likely to cause RLS.

Yes, more research needed on the cause(s) of RLS. It does appear to have some (converse) similarities to some forms of psychosis in that one factor causing them is excess dopamine and drugs which reduce dopamine or block it reduce psychotic symptoms. Alternatively drugs which increase dopamine levels or increase dopamine receptor sensitivity can lead to psychotic symptoms.

Seems like we're between the devil and the deep blue sea!

Ultimately RLS may be like some forms of psychosis i.e. an interaction between inherited predisposition and stressors. Lots of evidence for this e.g. the brother/sister of an identical twin who has a "functional" psychosis is more likey to suffer the same than the br/sis of a fraternal twin who is more likely than a non twin, who is more likely than another family etc. But, not all twins get the sane psychosis, especially if they've been raised apart.

Learning lots from you, thanks.

[Timetodance]

Thanks Manerva for the information. Will give more information on how this started hope it is not to long winded. Stopped 2.5 mg zyprexa end of June 2018. In november noticed that I had become aware of my right leg. Just felt heavier and more aware than the left leg. In December developed what I thought was pulled muscle in the top of my right thigh and have had this for months, also have it during the day and put up with it so don't take medication. Also at night would wake up and notice right leg heavier and at times pain would move around a bit as well. Sometimes down the bottom of my right leg as well. Told doctor about it and sent for xray but found nothing. In April went on holiday and doctor gave me script for temaze 10mg to take while on holiday, this only gave me 3 hours deep sleep and only took it for a couple of weeks as it is addictive. Got home after holiday of a week and went straight off sleeping tablets and did not sleep for a couple of days and had anxiety panic attack. Went back to doctor and was given Nitrazepam tablet 5 mg and told to only take half which I did that evening. Slept really deeply and thought I was asleep all night but when I woke up my right leg felt like led (really heavy) like when your arm goes to sleep. Also half sleeping tablet had only given me 1 1/2 hours deep sleep. In the right leg still get what I would call pulled muscle up the top of my thigh and also sometimes down the bottom of my leg and also the odd pain in different areas. Have also recently noticed that of an evening my left leg from my foot to the knee seems to feel quite numb but have no pulling of muscle in my left leg. Today have been to gym and body balance and the pain in the right thigh has eased but I do notice that both the bottom of my feet and around the ankles have what I would call a numb feeling. The pain in my right leg will probably come back tonight when in bed and the numb tingly feeling in my left leg usually moves up to my knee but no higher yet when in bed. Have an appointment to see sleep doctor on the 22/5/19 but want to be very carefull about medication. Also I still am on 20mg of prozac. Also of an evening in bed at the moment have no anxiety, the really bad panic attacks happen when I go for a few days without sleep, then anxiety is really bad. Has anyone got any answers. Thanks

[Hidden in reply to Timetodance]

Thanks for the more detailed description Timetodance.

Your symptoms are not RLS. I'm less familiar with Tardive dyskinesia, but your symptoms don't sound like that either.

It may be incidental only, as I don't think you have RLS, but if you did Prozac may make it worse.

As regards the sleep problem, this sounds like possibly a combination of Zyprexa withdrawal, anxiety and pain. Pain and anxiety can significantly affect sleep. Seeing a sleep specialist may help eliminate an actual sleep disorder. "Sleep hygiene" measures could possibly significantly help this. Drugs are not a long term solution.

Although I definitely have RLS and experience the classic symptoms of RLS, I also have distinct!y separate "non RLS" symptoms which are similar to what you describe.

These are due to neuropathy and specifically nerve compression in my lumbar spine.

If you have a similar neuropathy you will find the tingling, numbness ( or paraeasthesia), pain ( like burning?) and possibly tender muscles will be affected by posture, activity or position. Anything in fact that flexes your spine or pulls on nerves e.g. flexing your leg at the hip. Lying down will affect it. When my neuropathy is at its worst, simply standing up for a few seconds can make it unbearable.

On the other hand, some exercise will relieve it and a physiotherapist could recommend some specific exetcises. You could try looking up "exercises for lower back pain". If these work, then it's further evidence of neuropathy.

If the neuropathy is due to nerve compression, the pattern of symptoms will indicate which particular nerve pathways are involved.

An X ray might not be of much use. An MRI would be better. Your doctor should have given you a full physical examination, reflexes ( I have none in my legs), and range of movement.

Alternatively, there are other causes of neuropathy e.g. diabetic. Your doctor could have done some blood tests.

It might be better to see a neurologist, instead of, or as well as a sleep specialist.

I am not a medical expert, but in summary, your main problem appears to be neuropathy and your sleep problem, not a sleep disorder

[Timetodance in reply to Hidden]

Thankyou manerva for your advice. I will see what the sleep doctor has to say and also look at the other options U suggested. I do follow good sleep hygiene and agree that sleep probably is from zyprexa withdrawal. On the blogs for zyprexa withdrawal people say sleep and anxiety main withdrawal problem and I have had terrible sleep for the last 10 months . Will it ever get better . Could so easily go back on zyprexa but U loose your personality on it so I now have that back and will soldier on. Thankyou for your advice.

[Hidden]

It's difficult to say how long withdrawal effects will last.

Another factor is that after taking a medication for any length of time, when you stop it, you may return to the same situation you were in for which you started taking it in the first place. Certainly after having RLS for decades and taking medication for 12 years, I couldn't expect to stop taking the medication entirely and be symptom free.

It's not easy to tell however, e.g. some people dye their hair for years and really don't have a clue what colour it might be if they stopped dyeing it? It might not be its original colour, but might not be entirely white either.

[Jelbea]

I have followed the above posts with interest and would only add that I see Timetodance says she is taking Prozac. Many years ago I was put on Prozac when going through bad patch with my father dying from cancer. The Prozac really wired me up, so much so that I could not sleep at all and had so much nervous energy that I even did housework during the night. My son then aged 15 was given Prozac at the same time as me and became very hyper and emotional. Both of us reverted to normal on stopping Prozac.

[Hidden]

I have also just been reading these comments and noticed that Timetodance is taking Prozac, which wasnt mentioned before in her earlier comments. Prozac i would think is making things worse is on the no no list of anti-depressants.