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Mental Health Coming Off Vraylar (cariprazine), Rexulti (brexpiprazole), or Abilify (aripiprazole)

Some updates regarding my progress:
Starting around 4/29 (so last Friday), every morning I wake up I would have this intense terror and influx of flashbacks of terrible/stressful events that happened to me, and the brain "squeaky" noises in the back of my head especially intensify during the time I wake up. Every morning I feel like my body is going to explode and my limbs are going to twist like tree roots (they don't physically twist it's just the muscles feel so intense). If anyone is familiar with Elden Ring, I can say I experience death blight every morning when I wake up.

The ringing noises in right ear is 24/7 but not significant to a level that I can't hear anything. if I am sleeping on my right side the ringing noises intensify.

However, the internal body shaking and trembling have not returned as of right now(they went away around 4/18 ) and my menstrual period is over. No signs of them returning even after my menstrual period is gone.
I started drinking ginkgo biloba leaf tea last Wednesday.
It's been 65 days since I stopped vraylar, while I can feel the internal shaking is slowly improving, all other symptoms remain the same level. When I yawn with mouth wide open I can feel my right ear's muscle got pulled and the canal is temporarily blocked with louder ringing noises.

I am really scared and desperate. I am trying to get into a movement disorder unit that handles medication-induced movement disorder.

Whatever I do doesn't really make my situation better and nothing seems to be making it worse. The "squeaky" noises and right ear ringing noises seem to come out of nowhere(they did not appear until around 4/11). I searched up so many people who suffer akathisia would get triggered by food or loud noises, and their akathisia would get so intense(some experience super violent internal shaking) but I legit won't be triggered by any non-medication stimulants. I even get to beat godrick the grafted in one run with me panicky screaming and dodging attacks in Elden Ring. Even under such violent stimulation, I legit don't feel a difference in my symptoms.

I honestly lost a lot of motivation in doing things that do not bring me instant pleasant experiences. It even takes a great amount of mental effort for me to get dressed and walk out to enjoy a meal at my favorite restaurant.
 
It's 70 days since I stopped vraylar. again whatever I do doesn't really make my situation better. Still has full body random muscle twitching, ringing noises in right ear, and limb tremor. Holding objects in my hands without support makes my upper arm muscles stiff and I can feel my wrist shaking. Since yesterday I feel I have so little energy that I barely want to move. Even sitting on the chair makes me feel so tired and labored. Feeling extremely depressed both physically and mentally.
Speaking and breathing can take huge amount of effort from me, and I speak in the quietest tone now because of how tired I feel.
 
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It's 76 days since I stopped vraylar. On 5/12 I drank 1 and 1/2 glasses of highball (basically soda with very low percentage of alcohol) and nothing happened to me. For real whatever I eat really has no effect on my situation. Full body random muscle twitching, ringing noises in right ear, limb tremor, upper arm muscles stiffness when holding objects still remain. However, I feel my sleep is somewhat resuming. Usually, I fall into sleep around 11:30pm - 12am and wake up around 5-6 am after taking vraylar, but since this week I wake up around 7-6 am and if I want to sleep a bit more I can stay half-sleep and wake up around 9-10 am.
Still feel depressed and get tired easily. My friend is trying to take me out to an amusement park today.
getting an appointment in US takes a horrendously long time now. The first movement disorder unit appointment is in July, and the appointment to check my right inner ear is in August, smh.

Update after a day in amusement park:
Not even roller coasters stimulate me ¯\_(ツ)_/¯
my new psych NP has no idea how long acting vraylar is, she claims vraylar must have been out of my system by now because it's been nearly 3 months.
Another friend is trying to get me a neurology appointment on 5/24 in another hospital. The neurologist I've seen on 4/21 blatantly told me he can't help and can't even diagnose.
 
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I had the Abilify shot for a few months until I couldn't get it covered. Then I took the tablet for about six months at 30mg. Then on to clozapine. As far as restlessness, clozapine seems superior. Also better for psychosis they say.
 
79 days since stopping vraylar:
wake up terror seems to be alleviated.
every symptom other than core body inner vibration continues. The inner vibration mainly manifests in limbs now. My limbs feel numb with popping candies in my vein. The squeaky noises were quiet for a few days then return with a new situation: now every time it appears, a feeling of the back of the brain being squeezed would immediately follow. I can tell it happens right in the middle part of the back of my brain.
I honestly would rather stay in hospital and get myself linked to all sorts of devices and monitor my body, but that's not how hospitalization work.
 
a small update:
I just finished a dental tooth cavity filling today. I told the dentist I don't really want any numbing because of my situation. He agreed but told me if I jump he had to use numbs. Turns out the drilling on my tooth feels subpar to a level that's more like someone stuffed a huge amount of mentos in my mouth. I am not sure if I can call it "pain".
And just like roller coasters, not even the drilling or the "pain" stimulate my akathisia.
I am thinking about doing a rough record of how many muscle tics I have throughout the day. Want to visualize and see if there's any other improvement.

another update:
I have around 70 muscle tics/spasms per hour
 
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the new neurologist tested several new bloodworks, all within standard range. he said my physical multisystem examination looks normal as well. he told me to try 20mg propranolol twice a day. He wasn't able to see any muscle twitches when he did the physical exams.
I want to get in a hospital and have something monitor my muscles 24/7, but maybe that's not really possible.
 
20mg propranolol twice a day makes my chest feel tight and pressured and my breaths labored. he told me the propranolol may not be for me and he needs to reassess me with a new appointment, I called to schedule and I was told the earliest they can do is September, they also put me on waitlist in case someone cancels an earlier appointment. Wow.
 
SlowVeil said:
20mg propranolol twice a day makes my chest feel tight and pressured and my breaths labored. he told me the propranolol may not be for me and he needs to reassess me with a new appointment, I called to schedule and I was told the earliest they can do is September, they also put me on waitlist in case someone cancels an earlier appointment. Wow.
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Hey :)

I've just been reading your posts.. I don't have a psychotic illness, just debilitating anxiety and depression, but I have been put on various anti-psychotics by psychiatrists and GPs.

I've experienced the muscle thing and it's really horrible. At one point I ended up in Emergency because I thought I was having a stroke. By the time I got there I couldn't move. The doctor was asking me to sit up on the bed and I just started laughing because my muscles didn't work!! I didn't feel paralysed exactly, just weighed down.

I'd been on that anti-psychotic before and it made my muscles go strange, so I put two and two together. The doctors blamed diabetes of course (and the fact I admitted to smoking ice didn't go down well).

The environment was so stressful (a woman was literally screaming for an hour somewhere) I had a massive panic attack and I asked them for some Valium. They treated me like a junky, but guess what they offered me instead? That same anti-psychotic. I said no way and waited two hours for my Valium. Then I got the hell out. I haven't had that muscle thing since I stopped the Zyprexa (2018 ).

Anyway I'm sorry you're going through that. I don't really trust doctors as far as I can throw them, especially when it comes to mental health.

All the best..

Abbey x
 
AbbeyLee said:
Hey :)

I've just been reading your posts.. I don't have a psychotic illness, just debilitating anxiety and depression, but I have been put on various anti-psychotics by psychiatrists and GPs.

I've experienced the muscle thing and it's really horrible. At one point I ended up in Emergency because I thought I was having a stroke. By the time I got there I couldn't move. The doctor was asking me to sit up on the bed and I just started laughing because my muscles didn't work!! I didn't feel paralysed exactly, just weighed down.

I'd been on that anti-psychotic before and it made my muscles go strange, so I put two and two together. The doctors blamed diabetes of course (and the fact I admitted to smoking ice didn't go down well).

The environment was so stressful (a woman was literally screaming for an hour somewhere) I had a massive panic attack and I asked them for some Valium. They treated me like a junky, but guess what they offered me instead? That same anti-psychotic. I said no way and waited two hours for my Valium. Then I got the hell out. I haven't had that muscle thing since I stopped the Zyprexa (2018 ).

Anyway I'm sorry you're going through that. I don't really trust doctors as far as I can throw them, especially when it comes to mental health.

All the best..

Abbey x
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I don't have any psychotic episodes either. I was on abilify, lamictal, quetiapine in 2018 (also my first time trying to seek help from psychiatry) and had akathisia with stuffy nose so I quit them in early 2019 and had no problem withdrawing, also no muscle issues at all. The akathisia stopped right when I quit the meds. Now after just 17 days on vraylar in the lowest dose I feel my entire central neural system is trashed. I assume my brain was already messed in 2018, although I recovered immediately when I am off all the meds. I became more sensitive to psych meds so this time just after 17 days on vraylar I still suffer all these symptoms.
Also that kind of ER experience is really not uncommon. I went to ER on 3/7 due to akathisia, the psych doc was nice and tried to gave me lorazepam and propranolol. he told me someone would bring them in soon but I waited 7 hours in ER bed with no one came in. Then the psych doc came in and asked "hi how was the med." I told him no one gave me anything and he showed utter surprise and rushed out and got the meds to me himself. Sadly no meds would help my situation and I would never accept any kind of benzo again.
 
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SlowVeil said:
was on abilify, lamictal, quetiapine in 2018(also my first time trying to seek help from psychiatry) and had akathisia with stuffy nose so I quit them in early 2019 and had no problem withdrawing, also no muscle issues at all.
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That's shocking. It was bad enough being put on one anti-psychotic (an old one and can never remember the name) plus an anti-depressant, plus Xanax, plus anti-nausea - all for anxiety/panic when I was 19.

I became a total zombie and eventually my eyeballs were rolling back in my head. I was so scared and thought the eye rolling was indicative of my insanity and I was headed to a mental institution for life.

Thankfully my mother "sacked" that shrink and found a new one. He took me straight off everything except the Xanax and started again. I saw him for 20 years.. Mainly because we got along well, not because the treatment was that successful. He retired in 2018 though 😕
 
another update:
it's 3 months since I stopped vraylar and mirtazapine ( took it for 3 days to counter the akathisia from vraylar but didn't work). A lot of the symptoms stay the same, except core body inner vibration. Instead of that, since 4/18, my limbs constantly have extreme numbness/inner vibration: the kind that you would feel when you have your blood pressure measured but way more extreme. This morning when I lay flat on bed with nothing on my arms, I had that extreme numbness that only got alleviated when I move my arms around. I feel very frustrated that my limb would still tremor and sour up easily when I am holding something as heavy as a cellphone, and holding a soft serve from burger king feels like I am holding an obese cat.
 
AbbeyLee said:
I became a total zombie and eventually my eyeballs were rolling back in my head.
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I can imagine how horrifying that is. When I was on quetiapine in 2018 my nose would go completely stuffed and I was so frustrated. I took quetiapine at night before bed and my nose gets stuffed when I sleep so it was pure torture for me to just sleep. I visited so many ENT doctors because I thought there was something wrong with my nose, and none of them could figure out what was wrong with me but they suggested surgery (I was very cautious and said no to surgery). During my winter break in 2018, I went back to my hometown and did not take enough pills with me, and I discovered that I did not have any stuffy nose during the night when I ran out of the pills. Then I just tapered off quetiapine in early 2019, and being med free from 2019-2021.

I started seeking help from psychiatry in Feb 2022 because of several severely stressful events happening all at once in early 2022 and most of my time was taken away to handle them, so I couldn't really have a therapy session. I was feeling extremely desperate and my graduate school referred me to an irresponsible psych NP, thus beginning my suffering in 2022. FFS I really just wanted to feel better, took the med as prescribed, and now I am still struggling to heal like surviving in a swamp.
 
another update: it's 98 days since I stopped vraylar.
Starting on 6/3, every morning when I wake up, the inner vibration in my limbs would decrease for a while, and then it intermittently appears throughout the day, and in the afternoon & evening the intensity would go back to what I described on 5/28. Started taking fish oil every day since 5/24. Finally some window after 1+ months of constant symptoms. This time the window for limb vibration appeared way later than I expected. My full-body vibration started to have windows around 18 days after stopping the med and it completely went away 47 days after stopping the med.
 
107 days:
the muscle tics I have while resting is around 20-50tics/hour on average. electroshock + numb feelings now stay in hands and feet most of the time. Still feel disabled. better than the first few weeks tho.
 
SlowVeil said:
107 days:
the muscle tics I have while resting is around 20-50tics/hour on average. electroshock + numb feelings now stay in hands and feet most of the time. Still feel disabled. better than the first few weeks tho.
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You are reaching the end. Like, still 1-2 weeks and you'll be fine.
 
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