SlowVeil: Vraylar / cariprazine withdrawal

[SlowVeil]

Hello, I came across this website through google search "vraylar"

My med history can be viewed in my signature. I have been browsing this website for a while and I finally decided to register an account. I guess I feel desperate and really need some advice meanwhile waiting for a horrendously long time to see a neurologist and an ENT doctor to check what is going on and rule out other underlying situations.

 

I was first diagnosed as bipolar back in 2018 when I was still in college by school's healthcare center's psychiatrist. We tried Abilify first, switched to Lamictal and quetiapine after intense akathisia (it went right away when I ct abilify and switched to Lamictal and quetiapine). Then quetiapine gave me stuffy noses and by the beginning of 2019 I realize these meds didn't make me feel well at all, so I did taper on my own and became med free from 2019-end of 2021.

 

In the beginning of 2022, due to relocation to a new city, entering master program at a nice grad school, breaking up, worrying about whether I can get a job/go into a PhD, I had intense stress and caused me want to seek help from psych med again. My school referred a nurse practitioner (later found out to be irresponsible as hell) and she put me on vraylar 1.5 mg beginning 2/11. First 2 days feel ok until 2/14 I realized that feeling of "muscles bursting out of my skin" was caused by vraylar. I talked about this with the NP and she added mirtzapine on 2/25. It did not work and the NP told me to just stop both on 2/27. The rest of my med history is in my signature. The nurse practitioner is perceived as irresponsible because she dropped me immediately after I was hospitalized and disabled my account so I can't even access my medical record.

 

My development of symptoms:

2/14 - 2/27: intense feeling of "muscles bursting out of my skin/inner vibration" and restless/akathisia

2/28 - 3/16 (after stopping vraylar and mirtazapine): continued above symptoms, and muscle twitches/faciculation appeared: sometimes my finger, legs, and arms would twitch around. When I hold objects in my hands they tremor a lot.

during hospitalization: 3/17 the inner vibration alleviated during the day (might be due to trying lorazepam at night of 3/16), then came back at night in full force through out the entire hospitalization; muscle twitches spread to head. I felt my right ear had some infection and the nurse gave me some ear drops.

3/23: discharged, severe akathisia, along with all symptoms described above.

3/24 - 3/28: inner vibration/akathisia alleviated, but came back on 3/25.

3/29: inner shaking alleviated for a day, and then came back full force on 3/30.  all other symptoms continued.

3/30-4/10: a period of "inner vibration alleviated for a short while and came back throughout a day." all other symptoms continued. Starting from 4/09, a "squeaky noise" joined along with feelings of flowing sand/electro current running in the back of my head.

4/11-4/18: inner shaking was replaced by "bugs crawling under skin" and the intensity varied. On 4/11, right-ear tinnitus joined. On 4/16, a loud thump can be heard in my right ear as if the muscles in my inner ear also joined the muscle twitching symptom.

4/19-4/28: "bugs crawling under skin" almost disappeared in core area and manifested more in limbs, all other symptoms continued.

4/29-5/7: every morning when I wake up I felt something exploded in my chest and made me extremely agitated.  all other symptoms continued.

5/8 - 5/22: no more morning wake up explosion. The inner vibration came back in legs. Started to have very low energy since 5/8. all other symptoms continued.

5/23: woke up with the most severe electro shot/numb feelings in my limbs, as if there was no blood flowing at all. all other symptoms continued.

5/24-5/28: strong electro shot/numb feelings in arms when lying down on back, although nothing was on my arms. all other symptoms continued.

5/31: all of a sudden full body inner vibration came back this day. all other symptoms continued.

6/1 - now: no more full body inner vibration. electro shot/numb feelings mainly manifest in hands and feet. all other symptoms continued.

 

Now I know the symptoms that still manifest are paeathesia, tinnitus and faciculation. They are still very disabling and by no means I am functioning. The faciculation has dropped from around 70 tics/hour to around 20-50 tics/hour.

 

I am just very scared that it might be permanent and that even if I healed, all other non-psych medications that didn't give me trouble in the past would trigger all of these terrible symptoms again in the future.

 

I don't know what to do. Nothing seems to be stimulating or make my situation worse, but nothing helps neither.

 

 

[SlowVeil]

I feel so hopeless I honestly don't know what to do. All my symptoms are 24/7 unrelenting. I feel I am forever damaged and disabled.

[Shep]

Hi, SlowVeil.

 

Welcome to Surviving Antidepressants.

 

This is from your signature:

          2019-2021: med free

          2022- 2/11-2/27: Vraylar 1.5mg/day, 2/25-2/27: Mirtazapine(all under previous psych NP's instruction); Went to ER for akathisia on 3/6/2022 

 

When you were off of all drugs from 2019 - 2021, were you having any symptoms? If not, it sounds like you ended up in the ER for akathisia caused by an adverse reaction to Mirtazapine and / or Vraylar. 

 

Please post your thoughts on this. 

 

 

[SlowVeil]

23 hours ago, Shep said:

When you were off of all drugs from 2019 - 2021, were you having any symptoms?

No physical symptoms that I can think of. However during 2019 - 2021 I do have moments that I felt extremely depressed but again extreme stressful events also happened (In 2019 I was selected for a research intern for 2020 but it got cancelled in 2020 due to covid; in late 2020 I was preparing for on-campus research intern, applying for grad school, and preparing GRE; in 2021 found out toxic roommate trashed my room and denied everything she did, graduation & relocation, breaking up a relationship that's no longer working...)

I think the akathisia was initially caused by vraylar because I felt that few days after it was introduced. I think after introducing mirtzapine and all other meds the syptoms got aggregated.

Edited June 27, 2022 by Shep
fixed font size problem

[SlowVeil]

I am also thinking my right ear tinnitus might be caused by the few ear drops (I do not know what type) I had when I was in hospital. I felt my right ear had an infection and asked for ear drops. Turned out it's just a pimple popped. However it's odd because my right ear's tinnitus developed 18 days after discharged from hospital. I do not feel dizzy or have vertigo, but sometimes I do feel there are pressures and slight pains on the right side of the head or in the inner ear. I never had tinnitus that lasts for more than few seconds before this.

I am so scared everything will be permanent. Because of covid a lot of providers are extremely backlogged and I waited for 2+ months just to get an audiology appointment to see if I have hearing loss.

 

[Shep]

22 hours ago, SlowVeil said:

No physical symptoms that I can think of. However during 2019 - 2021 I do have moments that I felt extremely depressed but again extreme stressful events also happened (In 2019 I was selected for a research intern for 2020 but it got cancelled in 2020 due to covid; in late 2020 I was preparing for on-campus research intern, applying for grad school, and preparing GRE; in 2021 found out toxic roommate trashed my room and denied everything she did, graduation & relocation, breaking up a relationship that's no longer working...)

I think the akathisia was initially caused by vraylar because I felt that few days after it was introduced. I think after introducing mirtzapine and all other meds the syptoms got aggregated.

 

Thanks for this explanation. This does sound like an adverse reaction. Please see:

 

But I only took it for a Week - immediate adverse reaction

 

If you think back to how you felt in March after you were in the ER for akathisia, how much better are you feeling now? Do you feel that - overall - you're doing better? 

 

Here is some information on windows and waves, as recovery from an adverse reaction is similar to recovery from withdrawal in that the symptoms manifest in a window / wave pattern:

 

The Windows and Waves Pattern of Stabilization

 

12 hours ago, SlowVeil said:

I am also thinking my right ear tinnitus might be caused by the few ear drops (I do not know what type) I had when I was in hospital. I felt my right ear had an infection and asked for ear drops. Turned out it's just a pimple popped. However it's odd because my right ear's tinnitus developed 18 days after discharged from hospital. I do not feel dizzy or have vertigo, but sometimes I do feel there are pressures and slight pains on the right side of the head or in the inner ear. I never had tinnitus that lasts for more than few seconds before this.

I am so scared everything will be permanent. Because of covid a lot of providers are extremely backlogged and I waited for 2+ months just to get an audiology appointment to see if I have hearing loss.

 

 

Tinnitus is extremely common as both a side effect and a withdrawal effect. Please see:

 

Tinnitus: What does all that noise mean?

 

[SlowVeil]

4 hours ago, Shep said:

If you think back to how you felt in March after you were in the ER for akathisia, how much better are you feeling now? Do you feel that - overall - you're doing better? 

I would say akathisia(core + full body inner vibration) has gone since 4/18/2022, but all other symptoms remain. For akathisia it had a window & wave pattern, but for others they have been consistent. I can't say for sure that I am overall doing better: there are more days I felt I have so little energy that even breathing is tiring for me, and all other symptoms do not have noticeable windows at all. My tinnitus first started as high pitch static noises, then high pitch beeping/ringing, and now it's high pitch static noise + ringing at lower volume.

I am trying to relax as much as I can but there are still tasks that I cannot avoid, and there's no one around to help me since all my friends and family members are busy with their lives as well.

[Shep]

The fact that the akathisia and inner vibrations are gone is good. You are healing. You may want to add in a bit of magnesium and later, a bit of fish oil to see if that helps these other symptoms. 

 

We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose to see if your nervous system can tolerate it. For more, please see:

 

 King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

 

Gentle yoga, walking in nature, listening to calming music, avoiding too much screen time, etc. can all go a long way in helping us recover. You may find some helpful tips here:

 

Non-drug techniques to cope with emotional symptoms

 

Running a fan at night or using a device or an app for white noise can help with tinnitus, especially if it's keeping you awake. 

 

Unfortunately, adverse reactions can take a long time to work their way out, but it will get better in time. 

[SlowVeil]

5 hours ago, Shep said:

You may want to add in a bit of magnesium and later, a bit of fish oil to see if that helps these other symptoms. 

I started to take some fish oil soft gel in May but too scared to go higher dose. I don't really find any non-medical things that will stimulate me. there was one time I drank 2 glasses of highballs and nothing happened to me. (I don't smoke and I rarely consume any alcohol)

Just feeling desperate because I got hit by all of these disabling symptoms at a young age (turning 24 this year) when I'm supposed to work hard towards my aspirations, but again a lot of BS has happened to me since 2020 and I really need a break.

I am preparing to travel back to my home country, being sick and stranded in US where I am basically on my own really put huge amount stress on me and my tinnitus might be from that as well.

Another bigger fear is that I will be sensitive to meds that I did not have a problem before this, or that I will be sensitive to meds that will save my life. I have read some success stories but I barely see anyone mention how they react to other meds after their recovery.

[Shep]

17 hours ago, SlowVeil said:

Another bigger fear is that I will be sensitive to meds that I did not have a problem before this, or that I will be sensitive to meds that will save my life. I have read some success stories but I barely see anyone mention how they react to other meds after their recovery.

 

This is a valid fear and one to pay attention to should you need to seek medical treatment. People who aren't going through withdrawal should also pay attention, since not all medications are really safe and we are rarely ever given informed consent. 

 

As the body heals, we're able to tolerate more things, including higher levels of stress, more rigorous exercise, periodically indulging in unhealthy foods, as well as an increased ability to tolerate medications. 

 

The reason you don't see a lot of this in the success stories is because generally people write their success stories and rarely come back to these forums because they're out living their lives. If large numbers of people who wrote success stories were having major problems with medication sensitivities, you'd likely see them returning to the forum to research how their protracted withdrawal might be a factor. The fact that this isn't happening is a good sign that recovery from psychiatric drugs also means returning to a higher tolerability for many things, including taking medications. 

 

At your tender age of 24, I would look at getting hit with this early as a good thing. Many older people have their life savings wiped out and struggle to survive due to withdrawal. It's also much harder to get a job when you're older. So you're learning a valuable life lesson young  with many years to make up for the time lost due to being temporarily sidelined with withdrawal. 

 

If you learn non-drug coping skills and stick to a lifestyle with healthy food and exercise, you'll be far ahead of many of your peers in the long run. This is only a temporary phase with bad memories that will fade out as you recover and reclaim your life. 

[SlowVeil]

6 hours ago, Shep said:

This is only a temporary phase with bad memories that will fade out as you recover and reclaim your life. 

I really hope this is temporary. Thank you for your kind encouragement.

The reason I started seeking help from psychiatric medication is "too many bad memories keep haunting me", and I did not really have much time or energy to cope because I have to handle significant changes in life. This time my mind is being pulled by the thought of "I have gone through so many terrible events, I don't think I deserve this, I don't think I am going to live".

Sometimes late at night I would think if it weren't my incompetent parents I would not hit to this low bottom.

Right now the tinnitus is the most haunting symptom, and I find out I'm getting more obsessed over it. I did a complete audiology exam and the audiologist told me there's no hearing loss or any middle ear issue. I have tried to search about tinnitus in this forum but sadly I can't find much positive result of recovery or habituation.

Seeing my peers running around and fulfilling their lives surely is devastating. I think such mood is similar to a child going through leukemia and watching their peers playing outside.

[SlowVeil]

I think I am starting to develop phonophobia at this point either due to tinnitus or it's a new withdrawal symptom. Even fan noises/AC noises would ramp up my anxiety. I am sitting on the airplane that will carry me back to my home country and a feeling of "wanting to be knocked out and sleep forever" gradually arise.

 

Feeling very hopeless. No windows for any of these symptoms at all for nearly 3 months. This recovery is taking way longer than the akathisia, and I don't really know if akathisia is gone for good or if it will return.

[ChessieCat]

Noise cancelling headphones can provide some relief.

[SlowVeil]

7 hours ago, ChessieCat said:

Noise cancelling headphones can provide some relief.

Thank you, I think for now I would avoid noise cancelling headphones as once the airplane noises get cancelled I will be haunted by tinnitus. It turned out that by just playing podcast is enough for me to sleep during flight. Plane will land in a few hours and I will update my location accordingly.

[SlowVeil]

2 symptoms that I forgot to mention in my initial post:

1. I can hear intermittent squeaky noises that's similar to sand flowing or a plastic tube being squeezed. This appear the day before tinnitus appear.(In other words this appear on 4/9) This squeaky noise is definitely not tinnitus: it is located in the back of my head, near where my head and my neck connect; When it manifests I can feel that place getting squeezed or something flowing; at first it just appeared on its own but recently I find most of its manifestation follows my bowel movement: when I hear rumbling in my tummy that squeaky noise in my head will follow. I am unable to find any member posting similar symptom. However this is not as concerning as tinnitus.
2. Sometimes I will get a wave of electro shot / "bugs crawling under skin" that originates in the back of my head, where the squeaky noise located, and rushes to all over my body, all the way to extremities. Have not notice a clear pattern but I think it has something to do with emotional stimulant: when I am watching something that excites me, this can happen, but not always happen. When I was on a roller coaster in May this did not happen.
   • Example: not even roller coaster stimulates me but somehow watching Cars 1 where they do the "turn right to go left" drift can trigger this symptom, like even thinking about that drift is triggering a micro rush in my head rn. (What's with me and these Cars movies I did not even enjoy cars that much before getting hit with adverse reaction. Most time I would just spend a few more minutes looking at random nice looking cars on the street and that's it. I started watching Cars movies because as a nerdy computer science student I want to see how Pixar's computer graphics rendering techs have evolved over the years: Cars 1 is the first movie that Pixar used its own dynamic raytracing algorithm) (also USA cars in 1980's and before look way better than everything after) (Planes and its sequel is not made by Pixar and the drop of render quality in them is awful)
   • I thought conventionally defined "violent"/"exciting" situation would trigger such symptom but nope. roller coaster can't stimulate me. intense/violent video games can't stimulate me. Watching comedy/talkshows? sometimes. Reading? yes. Playing gentle games? yes. Sudoku? yes. Seems like the more thought process involved, the more likely that symptom will be triggered. Still have not figure out a pattern.

A symptom that I do not know if it relates to tinnitus or muscle twitching/faciculation:

Sometimes I would get a "thump" noise (like someone knock a drum with fist or stomp feet really hard on ground)  in my ear and this feels like it manifests in the ear canal near ear drum. This symptom appeared around 4/16. Again this is not as worrisome as tinnitus or the parethesia and I can't find any member posting similar symptom.

 

(I write as casual as I can but I indeed feel hopeless and that feeling of hopeless is like a snake hissing in my back, slowly driving me crazy)

[SlowVeil]

wow, I was just eating breakfast and then I noticed: that high pitch static and ringing in my ears felt absent. I quickly turned off the AC and closed doors up to create as much quiet space  as I can and plugged my fingers in my ears: I could hear the noise from my fingers and the tinnitus volume is low. A couple of hours ago I was just mentally frustrated to find out that my left ear seemed to join the tinnitus but now it's so incredibly low, and it has been absent for 15 minutes, WOW.

 

I do not know what worked, maybe because my quarantine hotel is surrounded by mountains and it's beautiful in the morning with all the mist and cloud and seeing nice looking nature maybe really smooth my mind somehow. Storks and Ergets flew by with a large river flowing in front of the mountains. A friend who was taking the same flight got assigned to a quarantine hotel near the sea and that's breathtaking as well. There's also an amusement park nearby with water park and although it's not packed but I feel so happy and jealous just by watching people playing in those parks. They were still playing in that wavepool (about 1/3 of the wavepool in Disney's Typhoon Lagoon Water Park, man I miss 2019 I went there and had so much fun) when there was a huge rain cloud pouring down.

 

Or maybe it's just a nice window. However all other symptoms: parethesia, muscle twitches still persist.

When I put in ear plugs tinnitus from both ears are very present now... it wasn't like this at all. Before I got on meds this year when I put on ear plugs I could enjoy pure silence.

[SlowVeil]

Starting from 7/3 around 6PM:

 

The parethesia/tingling spread to calfs and a bit passed my knees.

 

Compared to initial onset in April, my tinnitus seem to be getting worse. In April it was just high pitch static in right ear and I barely notice it during the day, only at night when it's quiet. Now its high pitch static + ringing/whistling with louder volume in right ear and high pitch static in left ear. Today(7/4) When I woke up a period of sharp whining appeared in my right ear.

 

I never had any jet lag before no matter how weird the flight time is, but now I have been adjusting jet lag for 3 days but it's still not adjusted.

 

I wanted to seek independence and cut away from my toxic family, thus seeking psychiatry for a quick fix for my mental problems ( most are caused by parents), but they are the only ones that can take care of me right now. 100% irony and abject. Half of the day I search if it's possible to travel to somewhere that allows legal VAD.

 

I tried to stay as optimistic as possible and read success stories or those with a sun symbol, but to my dismay I really can't find many that recovered from my symptoms. reading the tinnitus thread really does not make me feel hopeful or educated at all. Trying to compile posts of those who recovered may bring temporary relief, but then I would be plagued by the lack of details in those posts and go down a emotional spiral. Not to mention there are stories that really haunt me like the one guy that took pristiq for 24 days and suffer tinnitus for more than a year and it's still going. I tell myself the lack of detail in posts are logically a normal result when people's brains are fried up by meds and they can't really stay cognitively clear while documenting the process.

 

The quarantine hotel's wifi is really bad to a level I can't really access most of the non-drug technique for coping as they are videos (even with a VPN it's hard). My parents can't really communicate in English so asking them to read any English forum or materials is near impossible. There's also near 0 information of any support group regarding withdrawal syndromes in where I am, so finding people going through similar situation in my language is going to be very difficult.

 

Subjectively I do not think my situation is bleak as I seem to not experience any intolerance to food or any other non-drug/supposedly stimulating substance. (I don't smoke and I don't consider trying it), and my akathisia seems to be dormant as well. However I am also reminded by my body that I have not experience any window of my current symptoms for nearly 3 months and that things are getting worse. I indeed feel, very bleak and hopeless. I try to write as calm and as analytical as I can, but during most of my awaken time the thought of "either I sleep and wake up to be 100% recovered or I sleep and never wake up" plagues my brain, creeping deeper and deeper.

 

[Shep]

@SlowVeil Is the tinnitus so bad it keeps you awake at night? Does it affect your ability to hear when people are talking to you or you're watching TV or internet shows or listening to music? 

[SlowVeil]

3 hours ago, Shep said:

@SlowVeil Is the tinnitus so bad it keeps you awake at night? Does it affect your ability to hear when people are talking to you or you're watching TV or internet shows or listening to music? 

@Shep Initially it was not bad to keep me awake at night but recently it has gone real bad to the point I wake up with screaming tinnitus(definitely an increase in the tinnitus volume). It does not affect my ability to hear people talking or watching videos or listening to music, but I usually have to turn up the volume to hear and it's usually still over them but less noticeable, especially when my head is rested on some pillow with my ear(either side) on the pillow. If it stays the same I won't be too concerned about it but sadly the fact that it's evolving and developing to left ear is extremely worrisome to me. In April I asked my primary care provider about this and she told me to try flonase for a week. I tried and nothing happened so I just stopped.

 

On 6/27 I did auditory exam and the audiologist told me there's nothing wrong with my ear, including my hearing. I don't use headphones that often as other people of my age. There was no loud exposure or acoustic trauma. I suspected that the ear drops caused my tinnitus but it really does not make sense: ear drops were only applied in my right ear and if it's ototoxic the tinnitus would only stay in one ear but my left ear began to have tinnitus recently. This really does not make sense, unless there are stories showing applying ototoxic med in one ear can still trigger tinnitus developing into both. I know certain AMINOGLYCOSIDES eye drops can trigger tinnitus even if it's applied in just one side but that's usually because eye drops would directly go into the neuro pathways, and I know ototoxicity can have late onset. I wonder how doctors give a diagnose of ototoxicity.

[SlowVeil]

Now that I think of my situation I believe I should add insomnia in my symptoms as well. Insomnia is less consistent as sometimes I can sleep within 30 minutes even with early tinnitus, and my insomnia manifest in 2 ways: 1- It would take me 30min - 3 hours for me to actually fall asleep; 2- I wake up too early and sometimes no matter how late I sleep I always wake up around the same time. Insomnia combined with jetlag make me living in European time.

 

Right now my chest feels pretty tight.

 

The more I recollect my situation in the past 4 years the more I realize that in 2019-2021 I may have still been in withdrawal from meds that I used in 2018. I also became more suicidal while on meds in 2018 but at the same time college was extremely stressful to me. The emotional symptoms that I checked in withdrawal symptoms seem to be aligning with what I felt but around that time I thought I just had too much stress in life. I'm amazed that I managed to pull through college with 2 majors while going through all of these withdrawal symptoms, not to mention preparing for grad school.

 

My entry to psychiatry all started with a desire to get myself better sooner so I can be more efficient in pursuing my aspirations. Now I land in an abyss and I don't know if I can recover. Reading success stories brings temporary relief but with 0 improvements in my symptoms other than akathisa/inner vibration and symptoms gradually getting worse. I don't know how long I can hold on. With my symptoms I can't imagine pursuing my aspirations in the future. I don't really have anyone that I hold dear to or that I would worry if I am dead. I'm pretty aloof in terms of relationships and I firmly believe that if I am dead my "friends" would recover quickly from grief and move on with their lives. Yes things that I like can stimulate me and make me happy, but most time those happiness cannot mask the pain I feel.

[SlowVeil]

After sharp needle pains in my left ring finger and middle finger, and then both arms start to have an extreme tingling and numbing sensation that feels like no blood is flowing at all. The tingling in my calfs did not subside.

 

I really feel that I am permanently damaged. There's a Chinese idiom that can describe ADR/WD situation: The illness comes like a crumbling mountain and goes away like reeling silk. (Found something similar: It comes by pound and goes away by ounce). But I can hardly trace any improvement ever since 4/16/2022.

[Shep]

On 6/19/2022 at 6:06 PM, SlowVeil said:

3/17 the inner vibration alleviated during the day (might be due to trying lorazepam at night of 3/16), then came back at night in full force through out the entire hospitalization; muscle twitches spread to head. I felt my right ear had some infection and the nurse gave me some ear drops.

 

On 6/19/2022 at 6:06 PM, SlowVeil said:

On 4/11, right-ear tinnitus joined. On 4/16, a loud thump can be heard in my right ear as if the muscles in my inner ear also joined the muscle twitching symptom.

 

20 hours ago, SlowVeil said:

On 6/27 I did auditory exam and the audiologist told me there's nothing wrong with my ear, including my hearing. I don't use headphones that often as other people of my age. There was no loud exposure or acoustic trauma. I suspected that the ear drops caused my tinnitus but it really does not make sense: ear drops were only applied in my right ear and if it's ototoxic the tinnitus would only stay in one ear but my left ear began to have tinnitus recently. This really does not make sense, unless there are stories showing applying ototoxic med in one ear can still trigger tinnitus developing into both. 

 

SlowVeil, the reason I quoted your posts from 6/19/2022 is to show the timeline for your tinnitus. Since the ear drops were March 17 and your timeline has the tinnitus on 4/11, the tinnitus may be from withdrawal and not the ear drops. 

 

I'm glad you had the auditory exam and received a good report. This is likely withdrawal and in time, this symptom will fade out. 

 

Jet lag can definitely make things worse.

 

Please let us know how you're doing over the coming days. 

[SlowVeil]

Hello Shep, again thank you for your kind reassuring. I forgot to add the time of ear drop, sorry. The ear drop is introduced during the week of 3/21(exact date forgotten). I 50% believe the tinnitus is withdrawal. The other 50% resulted from searching the onset timeline of ototoxicity as I slowly discover that sometimes it can take days, weeks, months or even years for ototoxicity to really kick in after a med is introduced,  (some reference: https://hearinglosshelp.com/blog/drugs-and-tinnitus-put-yourself-in-the-drivers-seat/  and https://hearinglosshelp.com/blog/how-soon-does-tinnitus-appear-after-taking-a-drug-that-causes-tinnitus/ )  and that my tinnitus is really getting progressively worse over the months since 4/11(it was just one static noises in right ear but in May it becomes high pitch ringing with louder volume and now it has so many different tones in both ears), not just recently in quarantine with jet lags.

 

Yes it is reassuring that the audiologist on 6/27 told me I don't have any hearing loss and that my middle ears respond well to the sounds from those machines, but reading stories of people who get progressively worse on hearing loss help website really scares me, not to mention that I can't find many success of recovery from withdrawal tinnitus on this forum.

[SlowVeil]

Updated my signature to include non-psych meds.

 

I wonder if the shingles(or the med I used for shingles) I had in 11/2021 or the oral contraceptive I had in 05/2021 - 09/2021 has anything to do with my current situation. Seems like my nervous system really has gone through a lot since 2021.

 

Very interesting situation:

My period was very abnormal in 2021, and after I stopped in 08/2021, I did not have any period until 4/16/2022. 2 days after, my akathisia/inner vibration seemed to be gone. this period lasted for around 3 weeks again. And the period after that started on 7/1/2021 and it's still going. Many who suffer drug-induced akathisia had their akathisia ramped up before and during period, but it seems like my period does not have effects over my symptoms and whatever vraylar/mirtazapine/lorazepam did seem both wreck my nervous system and my hormonal regulation.

 

 

 

 

[Shep]

It's hard to say, SlowVeil. Like you, I suspect that any and all drugs and treatments can add to the problems, as side effects or as withdrawal effects. 

 

But I wouldn't catastrophize. While tinnitus seems to be a symptom that's very slow to fade out, if it was troublesome for people, we wouldn't have the success stories. Many people report that even if tinnitus doesn't completely disappear, it's much less troublesome. That's been my experience, as well. 

[SlowVeil]

A new discovery about my symptoms:

 

On 7/1/2022 at 11:20 PM, SlowVeil said:

A symptom that I do not know if it relates to tinnitus or muscle twitching/faciculation:

Sometimes I would get a "thump" noise (like someone knock a drum with fist or stomp feet really hard on ground)  in my ear and this feels like it manifests in the ear canal near ear drum. This symptom appeared around 4/16. Again this is not as worrisome as tinnitus or the parethesia and I can't find any member posting similar symptom.

 

I just immediately lie down(usually I sit first before lie down but this time I just fall on bed) from standing and for the first time in my right ear I had several consecutive "thump" noises and I think I can feel the muslces inside my ear was twitching. Seems like this has something to do with blood flow. Will get to see a neurologist the day after I finish quarantine and an ENT after that with more thorough exams.

[SlowVeil]

A symptom observation:

So I definitely have disturbed sleep described in here:

However, every time when I wake up, I find my paresthesia discomfort would decrease for a few minutes then resume back to original disabling feeling. My stomach would have a movement from bottom to top followed with the "squeaky" noise in my head. Don't know what

 

I also read through my journal and found I may had morning cortisol spikes from 4/29 to 5/6: I felt my chest super tight, full body got bombed, brain replay terrible events happened to me, as if I am being toasted in an oven - extreme unease feelings.

 

Still no windows.

This forum  really helps me pinpoint and understand what I am going and what I have been through (except the brain squeaky noise I have not found topics discussing this)

[Shep]

5 hours ago, SlowVeil said:

This forum  really helps me pinpoint and understand what I am going and what I have been through (except the brain squeaky noise I have not found topics discussing this)

 

On 7/1/2022 at 11:20 AM, SlowVeil said:

Sometimes I would get a "thump" noise (like someone knock a drum with fist or stomp feet really hard on ground)  in my ear and this feels like it manifests in the ear canal near ear drum. This symptom appeared around 4/16. Again this is not as worrisome as tinnitus or the parethesia and I can't find any member posting similar symptom.

 

I'm not familiar with "the brain squeaky noise," but there is something called "exploding head syndrome." Your comment about a "thump" noise made me think of it. 

 

Exploding head syndrome

 

More from Wikipedia - Exploding head syndrome - wiki

 

So I'm wondering if you're getting some sort of manifestation of this type of brain activity involving exploding head and tinnitus "squeaky noise" happening. 

[SlowVeil]

Hello Shep, thank you for directing me to this interesting syndrome. However I don't think the noises in my head has anything to do with my sleep as most of the noises (other than tinnitus) manifest after I wake up, not during sleep or between sleep and waking up. I've never get awaken by noises in my head but after I wake up I really have all sorts of noises manifest.

[Fosca]

Hi, I'm not an expert on this by any means, but with regards to the sounds you are hearing -- you might want to look into pulsatile tinnitus and tonic tensor tympani syndrome

[Fosca]

I've also heard of some conditions like "middle ear myoclonus" and "stapedius myoclonus" that you could research

[SlowVeil]

Thank you Fosca, I will be seeing an ENT on Thursday and I will discuss all of these with him. I agree that the "thump noise" might be myoclonus (if that's the case then it is the same as my muscle twitching in all of other parts of my body). In that case I probably gonna expect the ENT to advice me taking something that helps neuron growth or blood flow like Mecobalamin or Oryzanol.

Going to see another neurologist on Wednesday, hopefully he would figure out what's going on. Also going to consider traditional chinese medicine but consider vraylar being a fairly new drug and not approved in my country, it's going to be a trial-n-error.

[Shep]

On 7/12/2022 at 3:53 AM, SlowVeil said:

Thank you Fosca, I will be seeing an ENT on Thursday and I will discuss all of these with him. I agree that the "thump noise" might be myoclonus (if that's the case then it is the same as my muscle twitching in all of other parts of my body). In that case I probably gonna expect the ENT to advice me taking something that helps neuron growth or blood flow like Mecobalamin or Oryzanol.

Going to see another neurologist on Wednesday, hopefully he would figure out what's going on. Also going to consider traditional chinese medicine but consider vraylar being a fairly new drug and not approved in my country, it's going to be a trial-n-error.

 

SlowVeil, please be cautious in trying to fix a withdrawal symptom. Many members report their nervous systems hyper-react to treatment with supplements. Even certain foods can cause hyper-reactions. Your nervous system is sensitive and needs time to recover. 

 

If you do try something, start with a very low dose to test your nervous system. 

[SlowVeil]

some update:

will be getting an mri soon. the doctors also want to try either tms or ces/tdcs for my tinnitus, but after reading the story in here I think I am going to turn tms down.

[SlowVeil]

another update:

I still decided to give tms and tdcs a try because the area they are treating is different from those treating depression/anxiety with tms. They are actually treating the area that relates to my physical symptoms. The TMS procedure treated my Temporal lobe on left side (for tinnitus) and Supplementary Motor Area (for muscle twitches). Furthermore, it's friday so I only have to do one for each and I can observe my situation through the whole weekend instead of getting consecutive treatment for multiple days.

 

I feel the numbness has intensified and muscle twitches appear more often. I have not notice change in tinnitus but again it's not loud during the day. felt a very sharp needle pain in the center of my left toe.

[SlowVeil]

another treatment update:

They are giving me a treatment of "brain regulation electric stimulation". 2 wet cotton electro pads are put behind my ears(near the bottom) and they adjusted the volume to give me the one that I can feel some "numb" but not hurting. Can't find an official english name for this treatment but the area they are stimulating is cerebellar fastigial nucleus. Found some research papers in english (interestingly most of the authors are chinese, then russian, brazillian, japanese...) that demonstrate about fastigial nucleus electric stimulation can promote blood flow in brain.