SlowVeil: Vraylar / cariprazine withdrawal

[Chompoo]

@SlowVeil I am so happy for you that your sleep is improving. I agree that immediate adverse reactions can take as long as WD or PAWS for recovery. There also seems to be a big variation in recovery time. I've been told one person who took only 1 pill "recovered" after 6 months, but he/she left this forum without writing a Success Story. (I'm not sure if "recovered" here means functional or no more symptoms) But there's also a lady in Surviving Antidepressants who's only taken 7 pills and still not recovered after 3.5 years. 

In some Success Stories, people who "recovered" (functional) developed bad gastrointestinal issues half a year after most of their symptoms have gone away. And then their GI issues dragged on for another year before disappearing.

It does seem like we could be in for a long and uncertain ride. Though I certainly hope not!

My symptoms fall into 3 groups:
- Symptoms I get daily, which got better very slowly in a linear manner over time. Like my acne and heart flutters.

- Symptoms I get daily, which heal in a windows and waves pattern. Like my insomnia. Some nights, I sleep 6-7 hours. Other nights, I sleep 3-4 hours or anything in between. I get waves every month, where I would sleep lesser hours/wake up more frequently for 5-7 days consecutively. Then, when the wave is over, I would be able to sleep 1 hour more every night.
- Symptoms I don't get daily and come and go in waves. Like my tinnitus. I get ringing sounds that go away after one minute. Then they return a few more times over the next 1-2 weeks. Before disappearing for 4-6 weeks and returning for another 1-2 weeks.

Are your symptoms the same?

[SlowVeil]

21 minutes ago, Chompoo said:

But there's also a lady in Surviving Antidepressants who's only taken 7 pills and still not recovered after 3.5 years. 

yeah i have seen a guy on here still has symptoms 7 years after going clean.

some success stories are written in terms of being functional(i mean i can work but i apply medical leave days more frequently than my colleagues do due to some symptoms getting debilitating), but imo i only consider symptom-free and sensitivity-free as true recovery. the symptoms are there to remind us that our cns (or entire body in general) have not reach homeostasis prior to this iatrogenic injury, and thus we have to be careful about what we put into our body and our lifestyle.

 

you can read my symptoms from my past posts @Chompoo. it's good that your tinnitus comes and goes. mine has been 24/7 since beginning. recently i discover that i have very bad temperature regulation, as i had 2 heat strokes while sitting in an office when the temperature is fine for others.

[Chompoo]

4 hours ago, SlowVeil said:

yeah i have seen a guy on here still has symptoms 7 years after going clean.

 

The guy who still had symptoms after 7 years - did he have an immediate adverse reaction? Or cold turkey/quick taper?

Sorry to hear about your temperature regulation problems. I suffer the same too. I can't stay too long outdoors these days or I'll faint. It never used to be a problem because I grew up in a hot tropical climate. Was your insomnia recovery linear or in the windows and waves pattern? I couldn't tell from reading your past posts.

[SlowVeil]

14 hours ago, Chompoo said:

Was your insomnia recovery linear or in the windows and waves pattern?

to me it was very constant at the beginning and then a more windows and waves later. in the first 3 months i would wake up around 2-3 am and sometimes be able to go back to sleep again. then it's waking up around 4-5 am with no disruption. still would have a few days where i woke up around 2-3 am (late 2022 and first 2 months of 2023) and now it's around 5-6am.

i actually just had an insomnia last night, i couldn't fall asleep immediately like i usually do, and i wake up 5am again. but it might be a result from hot room temperature as well.

 i guess a/c is my friend now.

[SlowVeil]

seems like my current length of sleep is around 5-7 hours. last night went to bed around 11:30 and wake up around 5:45. temperature seem to be crucial in maintaining my sleep and preventing insomnia.

 

i also discovered that gentle bike rides won't stimulate me. the Orthopedist that treats my current carpal tunnel told me i should do gentle bike rides instead of walking to reduce stress on my legs. so i tried biking for 10 minutes for 4 days and it seems ok.

 

no symptom changes, still feel somewhat disappointed and depressed about this. but overall i am also adjusting lifestyles as well.

 

 

[Comecloser80]

3 hours ago, SlowVeil said:

seems like my current length of sleep is around 5-7 hours. last night went to bed around 11:30 and wake up around 5:45. temperature seem to be crucial in maintaining my sleep and preventing insomnia.

 

 

 

Hi @SlowVeil I am having a trouble with sleep since I stopped. I wake up at very unusual times during night, 2:30am ,3:30am, more likely 4:00 am every single day and cannot sleep after that. 
Rarely , I fall asleep past 4:00 am for another 30mins or so but I find myself half awake and dreaming at the same time. 
Is your sleep still broken or you are getting uninterrupted sleep these days? Do you consider your sleep has improved since you stopped ? 
Are you able to take nap during day? 

[SlowVeil]

@Purae

you can read my past post regarding my sleep. i do consider my sleep has a tad bit improvement as i don't really wake up around 4am anymore in recent 2 weeks, but keep in mind that i go to sleep around 11 to 12pm instead of 10pm.  there's also a topic called morning cortisol spike or something related to waking up around 2-4am. iirc it's very common withdrawal / adr symptom.

another fact is that i got injured in united states and i traveled all the way to china, so jet lag and timezone differences played an issue in my sleep as well. however i did not encounter big sleep issues until 4 months after traveling to china.

you also need to consider the fact that i had covid in dec 2022. as far as i know covid affect central neural system as well.

 

yes im able to take nap, but that i think is related to insulin spikes after having a meal. if i feel super sleepy after lunch i may take a nap for <30 mins.

[SlowVeil]

feel great to have more frequent nights of near 8 hours of sleep. last night legit slept for 8 hours again. (i don't have alarms as i just naturally wakes up). a year ago my sleep was very unstable, according to my notes. a year ago, and actually a couple of weeks ago, my average best days were waking up around 5am. but now, waking up around 6:30 or even 7 am is getting more and more frequent.

 

it's just shocking that these meds can leave injuries that needs THIS LONG time of recovery.

and it's also disappointing that physical symptoms are not fully gone, yet.

 

[Chompoo]

@SlowVeil I am so happy for you that your sleep has improved. Indeed, this recovery journey is so long and frustrating, even for us adverse reaction folks who's only had a few pills. I hope you will see greater healing soon!

[SlowVeil]

i realize that the bout of meds from 2018 and 2021 might contribute to over-sensitizing my cns.

i ct'd in 2018 with no problem. when i was on abilify i had akathisia but it went away immediately after i got of the med.

i used gabapentin at a large dose to alleviate the shingle pain and ct'd when the shingle was over. no adverse reactions or withdrawal at all.

 

i am scared. does this long adr means my cns has finally showing up the accumulated damages i received from 2018 and 2021...? i am scared that all those accumulated damages would lead to some permanent injuries....

[Chompoo]

@SlowVeil like you, I had a sensitised cns from an earlier adverse reaction to a medication before my ONE dose of antidepressant. I've seen others like us with a similar history before their adverse reaction to a few pills.

But I don't believe we have permanent damage. Many people here have had the same symptoms, and they have healed from them. It just takes a very very loooooooooong time to recover. I know you feel anxious because you're not seeing any progress in some of your symptoms. But it's the same for many people - they had zero progress for many months, until they hit a turning point. And then they started getting better.

Please don't worry and have some faith you will recover.

[SlowVeil]

@Chompoo thank you so much for your kind words. Reminders like this is always helpful. It's just I have not really seen any improvements in my tinnitus and muscle twitches for 14 months now. although my akathisia has subsided since 4/2022 and the tingling in hands and feet has reduced its intensity and area of effect, it's been nearly 4 months to notice any significant change.

 

Furthermore I just had 2 consecutive nights where I found myself woke up around 3-4 am gasping for air again(I could go back to sleep after that and wake up around 6-7am). I had done sleep tests during my hospitalization last year and doctors did not find sleep apnea. I had situations like this in April and May last year, so it's possibly a window as well. But I also have a theory that it's related to what I eat. a few weeks ago I had a similar night with me suddenly waking up gasping for air, and I've been eating too much nuts that week. I stopped eating nuts and I had better sleeps. It's strange because I did not have any nuts last week.

 

I think it's crucial to practice self-awareness in this recovery journey.

 

[Chompoo]

@SlowVeil there aren't that many adverse reaction folks like us in SA, so we have to stick together and encourage one another.

I'm glad to hear you have had at least improvements in some symptoms. I've read of some cases where the tinnitus only went away fully after 2-3 years. I don't think your tinnitus is here to stay, just taking its time to resolve.

On waking up gasping for air, it's very normal for old symptoms to come back. I've had that as well - my symptoms that I had in the very beginning and had gone away returned a few weeks ago. Like tinnitus, itching, prickling etc. It's all part of the windows and waves pattern of healing and may not be triggered by food. I am certain these symptoms will go away and come back again repeatedly - untiil my waves finally stop.

I found the experience of another SA member useful in understanding the recovery journey. Like us, he suffered an adverse reaction to a few pills of antidepressant. Whenever I feel frustrated by my up-and-down progress, or no progress in some symptoms, I reread his experiences and tell myself that what I'm experiencing is normal. And that I will heal like him one day. I hope his experiences help you too.

Please take care @SlowVeil and don't worry too much. You are still healing even when you don't think you are!
 

On 1/10/2023 at 10:48 AM, Scrountz said:

January 6th marked my one year anniversary from my adverse reaction. Today marks my one year anniversary from going cold turkey. This has prompted me to post a more comprehensive update for how I've been. I was a pretty prolific poster early on in withdrawal, but as things got more severe and strange, I stopped posting so much and just focused on enduring. I did not anticipate in those first few weeks of withdrawal, when things were already so severe and awful, how bad things would get for me before they would start to get better. But they're getting better, and that's all that really matters.

 

I would say I endured really really severe symptoms for the first 5 months or so, peaking in May-June 2022. Since then, things gradually levelled out to a "withdrawal normal" and have gradually improved from there. That withdrawal normal was some mixture of bad depersonalization/derealization, intense anxiety, depression, ruminating thoughts and self-hatred. This went on for months with little relief save for fairly consistent windows in the evening. Some days would be more severe and some days less, and  it was difficult to notice progress.

 

Starting in October things turned again. I began to have a much more mixed experience. I would have days that would feel very very bad again, sometimes feeling almost as bad as those first few months, and other days where I started to feel markedly better. I suppose you could say I had my first bigger windows in October, where the whole day would be a better one. These were always short lived, never more than a day or two, and then things would swing back to pretty awful again most days.

 

In about mid November things started to improve again. My windows started to get better. Again, maybe just 2-3 days, but those days would feel better than the windows in October. Things would swing back again, sometimes severely (I've had my fair share of dark days still), but the average day was better than it had been, and I've been gripping to that.

 

December has seen an improvement yet again. I had a window of 3-4 days over Christmas. Windows have really been me starting to feel a lot more normal. Symptoms, when they come back, have started to be less severe. I'm no longer experiencing the "withdrawal normal" which plagued me for a few months. I can still have severe days, and they're pretty awful, but they're shorter lived and there are more windows.

 

As I write this I'm back into a wave of sorts, but I just came off a 4 day window. Friday I worked and was at a friend's birthday and I don't think I thought about withdrawal the whole day. That's pretty huge progress from where I was even 6 weeks ago.

 

To give another perspective on my progress, here's a list of some things I'm still experiencing:

 

- Headaches (This ones new for me. I didn't get them much in early withdrawal but they've probably been my most frequent symptom since November)

- Depression (This comes and goes. Generally doesn't last longer than 24 hours. The last episode lasted just two hours)

- Depresonalization/Derealization (Markedly reduce in severity. So much better than it was but still plagues me most days)

 

I'm not really experiencing these things anymore:

 

- Intrusive thoughts/ruminating thoughts (No more MEGA OCD for me. The occasional day where I ruminate a bit on the past or beat myself up most of the day. Markedly less anxiety)

- Anxiety (So much less anxiety. I'd say this symptom has nearly resolved for me)

- Parathesia (Haven't really experienced skin burning in a while)

- Insomnia (My sleep quality has improved a lot, especially over the last couple of weeks. I'm sleeping deeper and more consistently)

- Suicidal ideation (This was a near daily symptom for me for many weeks in withdrawal. My last bout of this was about 30 days ago and only lasted a day)

 

I'm starting to feel confident I'm going to heal fully. I'm not sure how long its going to take, but the fact that things have improved a lot gives me hope. Though I'm having some rough days still, things are better.

 

For me the healing process is really slow and very back and forth and very consistent with the notion of waves and windows. Things keep changing and there is no set pattern. I could be having a wave of awful symptoms that feel impossible to cope with and start to convince myself I'm getting worse, and then feel suddenly fine and better than I've felt in months. Generally when a new wave starts my symptoms will feel different than any other time in withdrawal, which has also made things hard to predict. Its very hard to describe so I can only use words like "strange, weird, all over the place". 

 

So yeah, thats my update. Feels good to be sharing some good progress now. I hope if other people read this it gives them some hope. Its been one year for me and many many many days where I could see no light and felt totally hopeless. I just kept putting one foot in front of the other though and here I am.

 

 

 

[SlowVeil]

i have found the member who still has some symptoms after 7 years from adverse reaction:
 

there are more, such as alex. they don't really specify what exactly are their remaining symptoms.

i start to wonder if having adverse reaction/paws also makes us vulnerable to muscle and bone injuries? i have what the doctor called "strained wrist" for nearly 3 months now and i don't see much improvement yet. the only thing i can do is just wearing braces.

[Lauren90]

Hi @SlowVeil! Just wondering about your HBOT experience. Did you do mhbot or HBOT? Do you think it helped?

[SlowVeil]

On 7/14/2023 at 4:43 AM, Lauren90 said:

Hi @SlowVeil! Just wondering about your HBOT experience. Did you do mhbot or HBOT? Do you think it helped?

mhbot, 1.4ata

not really feeling a significant difference. so stopped.

[SlowVeil]

i'm confident to say my sleep is in fact, improving.

no more waking up around 4am. i don't remember any morning waking up around 4 am in recent 3 weeks.

i usually wake up around 7 am or 8 am if i go to sleep around 11:00 - 11:30pm. there are mornings that i wake up around 5-6am.

no changes in other symptoms. muscle twitching and tinnitus are still 24/7. the numbness/parethesia feeling gradually decreasing in area and intensity, in a very slow pace. i can't really notice its progress until i compare it to notes i had months ago. however i realize i barely feel the numbness in feet when i'm lying on the bed now.

[SlowVeil]

well i guess i can still wake up around 3-4 am with racing heart beats. however i usually can return to sleep soon after waking up. and finally wake up naturally around 6-7am.

maybe it's that i am using a thicker blanket and it made my body hot during sleep.

 

[SlowVeil]

feeling hopeless.

my symptoms do not react to anything. they don't improve after taking anything, and they don't worsen after doing anything.

and i don't experience any "waves and windows"

they are very consistent. there is not a single day when i feel "symptoms free"

it's been ~17 months now.

[SlowVeil]

sadly

insomnia has returned in an odd form in the recent 2 weeks

i no longer wake up in the middle of the night

but

i am having hard time falling asleep around 1 hour after i lie down on bed.

[SlowVeil]

seems like having hard time to fall asleep it's possibly not related to insomnia returning. it only happens if i stay up late for more than 1 day.

so keeping a regular sleep schedule is still the key.

now i sleep from around 11:30pm all the way to 5:50am to 6:00 am in the morning. uninterrupted. no alarms. natural wake-up.

other symptoms are still 24/7 and no substantial changes.  no windows at all.

[SlowVeil]

seems like i still have interrupted wake ups around 3-4 am, but usually i can return to sleep and naturally wake up again. some nights are interrupted while some others don't.

[SlowVeil]

searched about endothelial dysfunction, insulin resistance, cortisol spikes, pcos and all the 24/7 symptoms i am having right now. turns out they are all related.

 

I have a theory: the adverse reaction wreck my entire nervous system into a somewhat sensitive situation. it's sensitive enough to reveal all of the 24/7 symptoms that are related to underlying suboptimal health and endocrine problems, but not sensitive to the point that I react severely to everything.

 

besides, my exercise tolerance has built up a lot since 2022. I remember in April 2022 even doing some yoga could exhaust me, and I walked very slowly as walking was exhaustive as well. Later in June 2022 I was able to walk at normal pace, but in Jan 2023 riding a bike on a flat ground for 5 minutes could tire me out. Now I'm able to ride bike for ~20 minutes for work commutes and I don't really feel that exhausted.

 

actually, 40 minutes bike ride is not a problem for me either.

 

but all the symptoms still persist. no windows at all.

 

Furthermore, ever since I follow the regime recommended by nutritionist, my weight changed from ~81 kg to ~74kg.

[SlowVeil]

update again:

 

my current sleep is  from 11pm or 12 am all the way to 5-7 am. and it's been nearly 3 weeks with (what i can remember) 2-3 nights of waking-up-in-the-middle. so I am confident and happy to say my sleep is really slowly returning to normal, well not sleeping longer but way less interrupted sleeps or waking up around 3-4am.  previously i talked about how i could sleep 8 hours, but those nights usually have wake-up-in-the-middle around 2-4 am and return to sleep. and earlier than that period it was "waking up around 3-4 am and unable to return to sleep again")

 

All other symptoms do not have substantial change so far. and if I have a very bad mood or under huge amount of stress, I notice the numbness in finger tips and toes would spread to wrist areas with stronger numbness, and my muscle twitches will turn into limb twitches when I lie down and fall asleep.

 

When I feel excited there will be a short bout of akathisia and agitation returning.

 

i realize my endurance is quite massive even compared to normal people (those who are not med-injured). i can walk slowly with longer period of time.

[SlowVeil]

i need some insights on this:

 

as documented in this topic, muscle twitches have been 24/7 and have no signs of improving.

 

in late october (october 26), i had 2 consecutive nights when i was close to falling asleep, and the muscle twitches would evolve into limb or trunk or head or mouth or facial spasms and wake me up immediately. they feel very similar to dystonina or tardive dyskinesia, and they happen nearly every 3 minutes. last 3 nights i had these spasms again.

 

i am very scared. i can't sleep well because of these spasms. i can only sleep less than 5 hours during nights when these spasms appear. i do not think it's stress related as i have encountered way more stressful situations in 2022 and such spasms did not appear during those times at all. there is not many changes in my routine other than i temporarily discountinued traditional chinese herb medication in late october. but i have discountinued the herbs before and there were no issues.

[RobertZ]

3 hours ago, SlowVeil said:

there is not many changes in my routine other than i temporarily discountinued traditional chinese herb medication in late october. but i have discountinued the herbs before and there were no issues.

There seems to be a temporary correlation between your worsening of sleep because of muscle twitching and discontinuing the herbs. People sensitised by psychotropics sometimes react badly to herbs, certain supplements or even medications that are not typically associated with neurological side effects, but are known to be neuroactive (like certain antibiotics).

[SlowVeil]

I read through my progress both on here and in my private note, and I find that the decreasing of numbness corresponds with the time I start to consume vitamin B supplements. so maybe they do work for me but they need to build up and they work slowly. so i am thinking about resuming vitamin B again, but in less doses and less frequency.

[SlowVeil]

sleep has returned to waking up around 5 am. or even 4 am sometimes.

[Comecloser80]

42 minutes ago, SlowVeil said:

 

sleep has returned to waking up around 5 am. or even 4 am sometimes.

 

This has not stopped for me in 14 months. Do you wake up calm ? 
I get surges and very weird sensations. 

[Farm24]

On 11/5/2023 at 1:14 AM, SlowVeil said:

i need some insights on this:

 

as documented in this topic, muscle twitches have been 24/7 and have no signs of improving.

 

in late october (october 26), i had 2 consecutive nights when i was close to falling asleep, and the muscle twitches would evolve into limb or trunk or head or mouth or facial spasms and wake me up immediately. they feel very similar to dystonina or tardive dyskinesia, and they happen nearly every 3 minutes. last 3 nights i had these spasms again.

 

i am very scared. i can't sleep well because of these spasms. i can only sleep less than 5 hours during nights when these spasms appear. i do not think it's stress related as i have encountered way more stressful situations in 2022 and such spasms did not appear during those times at all. there is not many changes in my routine other than i temporarily discountinued traditional chinese herb medication in late october. but i have discountinued the herbs before and there were no issues.

I get those spasms too. Do your joints feel really stiff?