Neuroleptics. Vent.
Sorry this is a vent about drugs and psychiatry.
I think I got RLS through neuroleptics.
I got abilify in January and it caused akathisia. It was switched to amisulprid and got akathisia again at 400mg. It
was reduced to 300mg again and they added 200mg quetiapine. (I felt very drugged and had less expressions on my face at this point). After a while I developped severe akathisia again one night and drove with a taxi at 3 o'clock back to the psychiatry in urgency. I was given rivotril and taken out amisulprid and reducing quetiapine to 100mg.
After rivotril was taken out I noticed I slept badly and with time I began to jerk at night with my legs and started to have sensations in my legs and later in other body parts like arms and back, also during the day. With this the urge to move came back but differently. It feels different to akathisia in my opinion. I can still control mostly during the day except for when I rest my legs for too long or at night. It also varies in intensity but drives me crazy during the day.
I now take only 50mg because the psychiatrists really wanted to keep me at 150mg quetiapine and I fought with them over a month because I wanted to stop it, fearing that quetiapine causes it.
I give up fighting them and take 50mg but in due time I also want to stop taking it. It means I would have to fight with my psychiatrist again. I felt like I couldn't communicate with them because they think my RLS isn't caused by quetiapine but I don't trust it at all.
I took gabapentin for the first time yesterday night. I don't know if it is placebo but I think I already jerked less at night.
I also take magnesium and folic acid. They say that if it is caused by folic acid deficiency it will probably still take weeks for there to show improvement.
I also got a CT scan but I don't have the results yet (Because of claustrophobia I cannot do MRT scans. Even the CT scan made me get a panic attack)
Neuroleptics sedated me so much at 500mg that I also spoke in a monotone voice and couldn't show many facial expressions. I truly believe I am very sensitive to neuroleptics and should stop those 50mg quetiapine. I don't think I need them. I won't tell my diagnosis here online but I think they misdiagnosed me anyway and my family and friends who know me think so too. They also are annoyed with me at the psychiatry and neuroleptics which just seemed to add more difficulties impacting my life.
The lack of sleep became already a big sleep debt beginning this April (my sleep quality was already bad to begin with). It is already impacting my ability to participate in everyday activities and therapies. I am too tired all the time. The same can be told for my daytime symptoms. They also impact me. As they vary in intensity and sometimes come and go but they can be there even without rest and then I cannot concentrate for other reasons than lack of sleep.
I hope the antiepileptic/anticonvulsant gabapentin will help and won't cause bad side-effects.
Thank you for letting me vent. I think I need a support group that understands my pain to talk to. Nobody I know understands how bad akathisia or RLS is. I think only one person I met in psychiatry had similar symptoms to akathisia due to tavor(benzodiazepine) withdrawal. And friends who know others with RLS only have it at night not during daytime like me. Some people I met in psychiatry even think of it as nothing serious at all. It always seems harmless when I explain it. But it severly impacts my life and everyday functioning and mental health.
Hello, i read this post with interest since i share a similar story.
I also have been under psychiatric drugs for a few months and they have been really bad for my health, my RLS is i believe primarily caused by the few months of neuroleptics and antidepressants i have been under, and i thank god i escaped from them in time as i don't know what my situation would be like today.
I also shared my whole story in the "Story" section, even though i have to ask moderators why it has not been added yet.
Hi
. I am looking into the situation with your story. Hopefully, we will get it posted soon. Thanks for being so understanding. - Lori (Team Member)
Trigger warning of suicidal mention.
Hello. My life is a mess. My RLS is sadly severe and I had a fight in psychiatry about quetiapine until recently. I stopped it at the lowest dose of quetiapine retard 50mg which I also had a fight about to reduce it, then when I stopped after months of saying I wanted to stop but they didn't let me..another fight. For 3 days after stopping it my RLS was nearly gone but then it came back even more severe that I had to tell the psychologist that I wanted to jump off a bridge to stop it so on Monday they admitted me to a closed station again for suicide danger(I was in the dayclinic for a week. have been stationed in psychiatry since January). Now they give me oxydocone(an opioid for pain) on top of 500mg gabapentin. Today I got it for the first time. I am exhausted everyday even with sleep. Gabapentin helped my jerking at night but sadly not for everything else. I don't know why I feel so exhausted.
Thank you very much for your research and support. Sorry my life is too much of a mess with no good news to update. Even now I don't have much hope for it to ever get better. I hoped stopping quetiapine would. It feels painful. I don't know why my rls feels so painful it drives me to suicidal behaviour to stop the pain. It never sounds as debilitating when I read on it. Today starts as a good day for my rls but my mental state is very chipped. Maybe it was already too precarious of a mental state to cope.
I am so sorry to hear of your struggles. I have heard a lot of people develop RLS with quetiapine. I know I can’t take it. But I also know sometimes it’s not an option. I have a close friend who takes it but times the doses carefully so it doesn’t impact her sleep as much. A lot of psych meds do cause RLS because of the dopamine interactions and I have found it difficult to find psychiatrists who understand that. I have bipolar II and I worked with my psychiatrists to find mood stabilisers that don’t impact RLS. It’s much harder to find antipsychotics and antidepressants. I also have two medications specific to RLS that help me - pregabalin and pramipexole. Without them I would be completely insane. I have had a major mental health breakdown so I understand what is like to feel like you’re losing your mind. I hope you treating team can help you find solutions that ease your distress for the short term and the long term. Look after yourself.
Cheers. Simone
(Team Member)
Hello friend, I am sorry to hear that things haven't improved much since your original rant. I can't imagine what it must be like for you but at the same time, it's amazing you are still here with us and I am glad you are.
Out of curiosity, have you had a sleep study done to see how well you are actually sleeping at night? The combination of not sleeping, the strong emotions, and the meds definitely can be a cocktail for extreme exhaustion.
Unfortunately, it's not uncommon for people with RLS to feel suicidal:
"In a cohort study that included 169,373 participants, individuals with restless legs syndrome had a higher risk of suicide and self-harm compared with age- and sex-matched participants without restless legs syndrome, and the increased risk was independent of common diseases and conditions."
https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2748664
To boot, you have other things going on aside from RLS.
I hope things get better for you. Sending a gentle hug and positive vibes your way
🥄🦄 Ray (Team member)
Greetings Nacchi, thank you so much for venting here! I hope that this feels like a safe place to do so for you. I hope we can be a support group for you, even though we may not always understand everything you are going through.
There were a lot of medications that you mentioned that I have never heard of, especially, quetiapine. Doing a quick google search I came across this:
"We report on seven cases of restless legs syndrome (RLS) in patients treated with quetiapine. Small doses (50–250 mg at bedtime) provoked RLS in a dose-dependent way"
Restless legs syndrome induced by quetiapine: report of seven cases and review of the literature - https://academic.oup.com/ijnp/article/16/6/1427/754404
There is also this behind a paywall but your doctor should be able to access it:
https://pubmed.ncbi.nlm.nih.gov/23331473/
Restless Legs Syndrome Caused by Quetiapine
https://www.chronobiologyinmedicine.org/upload/pdf/cim-2019-0030.pdf
I hope being armed with this information can help you advocate for yourself and be heard. I wish you all the best, and please update us if you feel comfortable doing so.
🥄🦄 Ray (Team member)Thank you both very much for your tips and compiling this list to me. I will read it on the weekend when I feel less exhausted. I am very exhausted everyday because of lack of sleep. Today I saw an improvement in my day-time symptoms. It's still there though. Especially at night. Maybe Gabapentin takes some time. I hope it will help.
