SlowVeil: Vraylar / cariprazine withdrawal

[Shep]

On 7/15/2022 at 4:05 AM, SlowVeil said:

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, are you symptom free during the day? Or do you have other symptoms besides tinnitus?

 

 

[SlowVeil]

14 hours ago, Shep said:

SlowVeil, are you symptom free during the day? Or do you have other symptoms besides tinnitus?

Hello Shep, all my symptoms are 24/7. Currently, my other symptoms(besides tinnitus) are: full body random muscle twitches, numbness/electric shot feelings in limbs（mainly in hands and feet but can spread to entire limb from time to time), feeling tired.

[Shep]

3 hours ago, SlowVeil said:

Hello Shep, all my symptoms are 24/7. Currently, my other symptoms(besides tinnitus) are: full body random muscle twitches, numbness/electric shot feelings in limbs（mainly in hands and feet but can spread to entire limb from time to time), feeling tired.

 

Thanks, SlowVeil. I would be very cautious with TMS. You mentioned your treatments are targeting tinnitus, but with these other symptoms, you may end up helping one symptom at the cost of creating more problems elsewhere. Just a thought. 

 

In time, these symptoms will fade out. You're still just a few months out from your last night, meaning you may be on your way out of the acute phase of withdrawal. 

[SlowVeil]

14 hours ago, Shep said:

Thanks, SlowVeil. I would be very cautious with TMS. You mentioned your treatments are targeting tinnitus, but with these other symptoms, you may end up helping one symptom at the cost of creating more problems elsewhere. Just a thought. 

Thank you Shep. I was thinking of the same so after one treatment I told them I don't really want to get any until all my exams are finished and results come out. They may find some underlying issues to treat instead of treating the symptoms.

Right now my major worry is that all these symptoms barely experienced any change for 3 months(for muscle twitches it's been 5 months now), compared to my akathisia/inner vibration.

[Shep]

9 hours ago, SlowVeil said:

Right now my major worry is that all these symptoms barely experienced any change for 3 months(for muscle twitches it's been 5 months now), compared to my akathisia/inner vibration.

 

If your akathisia and inner vibrations have decreased, you're healing. You may have symptoms that are taking longer than others, but your overall symptoms are decreasing. That's healing. 

 

I'm glad you're holding off on the TMS. 

[SlowVeil]

I forgot to include that I am voluntarily hospitalized in a neurology department with way way way less restrictions (you wouldn't see me updating here for more than a week if I'm in involuntary psych ward ). The doctor that I found is a neuro in a psych specialization hospital who is actually working with other doctors nation wide on publishing a guide for handling psych med induced symptoms and he just got in 2 college students who suffered from taking Amisulpride for less than a month. He thinks such case is multidisciplinary and next week I am going to get cross-evaluated by him and doctors from other departments.

 

finished mri yesterday(7/21), now just wait for results and next exams. as expected no abnormality in "organic" issues. however i believe neurotransmitter and receptor disregulation is physical, it's just current technology is not precise or advanced enough to detect it.

 

strange thing: when the mri machine was whirling and running, a muscle on my upper right arm twitched in sync with the machine's ryhthm.

 

blood result are mostly normal except a bit high Testosterone and white blood cell. When I was hospitalized on 3/16 they had my blood and the white blood cell was 12.9, and on 7/13 when my blood was drawn for initial exam it was 9.8, and now it's 9.5. There is definitely some inflammation since March. I was required to do chest CT scan before hospitalization and they found small GGO(GGN) in my left lung, which is highly likely a result of inflammation. The high testosterone is a bit concerning as when I had blood test in April my hormones were in normal ranges.

 

They also did an endothelium exam and I was way lower than standard range.

 

I started raising omega-3 fish oil triglycerides (with 180 mg epa and 120 mg dha) to 1200mg per day after doing 900mg per day for a week since 7/19. I'm eating Blackmores Fish Oil 1000 Odourless.

 

Starting to have difficulty in falling asleep(took me more than 1 hour to actually fell asleep) and waking up too early again. I keep my room as dark as possible and wear eye masks. I was sleeping quite well for 3 days. 

[SlowVeil]

additional information regarding my blood result:

my ALT, magnesium, prolactin are all a bit higher than standard range, although doctors claim that "it's not clinically concerning" but I do wonder what could all of these mean if they are a bit high.

[SlowVeil]

seems like the squeaky noise in head and the inner ear muscle twitch/thump have quiet down a bit. I haven't have any of them for 3 days I think. (meaning there's no memory of them appearing in recent 3 days)

[Shep]

Glad to hear this troublesome symptom is improving, @SlowVeil

[SlowVeil]

19 hours ago, SlowVeil said:

seems like the squeaky noise in head and the inner ear muscle twitch/thump have quiet down a bit. I haven't have any of them for 3 days I think. (meaning there's no memory of them appearing in recent 3 days)

and nope this morning they all return. Windows & waves i guess.

[SlowVeil]

from 7/25 afternoon to now, the symptom of extreme exhaustion re-appeared: there were days I felt so tired that even breathing is laborious. I barely leave the bed. The doctor gave me 2 hours of oxygen followed by 20 minutes of fastigial nucleus electrical stimulation. none seems to help. took an afternoon nap today and still feel fatigue.

[SlowVeil]

getting discharged next week. The doctors can't really do much about my situation and they also believe it's best to let my body wash out as no "organic" issue show up and the deficiencies are not clinically concerning.

[SlowVeil]

a small update: I started trying traditional medicine and mhbot to promote healing. also doctors did mri on my neck and back: turns out some bones are misaligned.

I have been drinking customized herbal soup for 3 days and idk if it's the soup or the dietary changes suggested by traditional medicine doctor, but I don't burp that often through out the day now: Since 7/11 I used to burp at least 30 times per hour but now after drinking the soup for 3 days I burp once per few hours.

[SlowVeil]

Today I'm raising my omega-3 fish oil from 1200 mg to 1500 mg per day. I do not feel much difference when I was on 1200mg. I wonder what will the tapering protocol be for omega-3 fish once I reached 2000mg and I can't tolerate that much.

 

Started taking ginkgo biloba hevert 160mg per day on 08/05. doctors suggested that it will be good for blood circulation and "brain function repair". No bad reaction to it so far but also feel like nothing improved.

 

Because my blood work shows my magnesium is higher than standard, I stopped magnesium glycinate since 7/19.

 

Ear muscle twitch and thump seem to be less frequent since 8/6: I don't have obvious memories of them appearing. All other symptoms remain the same. The numbness intensifies and spreads especially when I am laying down.

 

I am thinking about trying mhbot in low pressure and shorter time. I have tried it once on 08/05 and it did not give me any bad reaction.

 

 

 

[Ariel]

Hello @SlowVeil

It sounds like you're trying a variety of interventions. 

Do you know about the SA recommendation to only make one change at a time? 

 

 

Wishing you all the best on your continuous healing journey,

In solidarity and support,

A.

[SlowVeil]

On 8/8/2022 at 5:31 PM, Ariel said:

Hello @SlowVeil

It sounds like you're trying a variety of interventions. 

Do you know about the SA recommendation to only make one change at a time? 

 

 

Wishing you all the best on your continuous healing journey,

In solidarity and support,

A.

Hello Ariel, Thank you for chime in and remind me of this. I guess I do get hasty about my situation. (seriously I am dying of getting my normal life back it made me ruminate so damn much seeing how my peers are running around and fulfilling their aspirations while me being trapped by all these symptoms)

 

I am still trying to figure out what kind of stable pace I need to go. For my previous omega-3 dosage increase I waited 2 weeks. Maybe I should wait for same amount of time for this increase before doing any further intervention. I have consumed herbal soup for 5 days now and have not seen any unusual symptoms - in fact I can fall asleep faster and stay asleep longer than before. I also consulted this with the traditional medicine doctor and she told me taking fish oil and ginko would not interfere with the herbal soup; There were other plant-based supplement that I wanted to try and consulted her before buying them, and she told me do not take them.

 

Regarding mhbot, since its effects are accumulative, I am willing to take the risk and do it for 15 days to see how this would go. While lying in the chamber I find it calming and relaxing.

[SlowVeil]

I'm going to stop the mhbot for a while. Since Monday I felt there's an inflammation in my throat, and every time I cough I would feel some chest pain and the mucus is yellowish. The mhbot center's guideline states that upper respiratory infection would be dangerous for mhbot. Going to see a doctor to check what's going on with the current inflammation. Also started to feel some digestive system disturbance last night: I feel something is tumbling in my stomach to the point it's a dull 1/10 pain.

[Shep]

6 hours ago, SlowVeil said:

Since Monday I felt there's an inflammation in my throat, and every time I cough I would feel some chest pain and the mucus is yellowish.

 

Have you taken a Covid test just to rule that out? 

[SlowVeil]

3 hours ago, Shep said:

 

Have you taken a Covid test just to rule that out? 

Did a test this morning, result just came out: negative.

The respiratory doctor understood my concern about antibiotics and prescribed me some chinese patent medicine to treat it instead.

[Shep]

Glad you're negative for Covid. Be careful with anything you put into your body while your nervous system is destabilized, Even Chinese patent medicine could cause upticks in symptoms. Best to start out with a very low dose of anything you try to see how sensitive your nervous system may be to it. 

 

 

 

 

[SlowVeil]

Definitely. The doctor prescribed me with lowest possible dose. Not seeing much difference in my existing symptoms but seems like my cold symptoms are slowly alleviating. I cough less, my throat is no longer sore, and not every cough comes with chest pain now.

 

Also I take into the odd fact that  I would get sick/cold for no reason every time I return to China after staying abroad for more than 6 months. This is not uncommon among Chinese international students who got sick right after returning to China during Summer or Winter break.

[SlowVeil]

One thing that worries me: I may suffer dementia or something similar later in my life, after this adverse reaction attack.  such chance may not be very big as I basically don't encounter any food intolerance or supplement sensitivity, although it is scary for me that I tried 100mg B6(thats a massive dose) for around 10 days back in April when I was in severe akathisia.

 

still no changes in my symptoms at all other than ear thumps can be gone for 2 days and then come back.

 

inflammation symptoms continue to improve. Coughing less and not every cough comes with pain. Less mucus in nose and throat.

 

Also chatted with my own ENT and several other ENTs that are family's friends. I do not have any hearing loss, even in the higher ranges (all the way up to 20khz). I can hear all the high frequencies even with people talking outside my testing chamber. my own ENT told me just don't worry about it and relax as much as I can. Other ENTs told me if I don't have hearing loss or any "organic issue", then tinnitus is usually related to a disturbance in microcirculation, which would benefit from being as much relaxed as I can.  Sounds reasonable and I believe microcirculation disturbance might be behind all my constant physical symptoms right now. damn these psych meds they really mess up the entire system even the microcirculation is disturbed.

 

[SlowVeil]

yesterday family took me to a bone massage practitioner and it was painful: the massages were really strong to a level i can hear my bones crackling. Had a very short(lasted only a few seconds) tinnitus spike afterward then quickly went back to baseline.

 

Last night woke up with very loud tinnitus (its volume was the same if I plug my ears. usually if my ears are not plugged the volume would be lower) and crazy muscle twitch on my right upper eyelid. Asked for a hot water bottle under my head. This morning woke up with no more twitch, tinnitus with relatively lower but still higher than usual volume.

[SlowVeil]

And  last night when I fall asleep the crazy eye twitch began again, and this morning still going at a rate of 1-5 tics/second. The base of my neck also feels sore as if I sit at the desk for too long.

 

Something I noticed about my sleep after stopping fish oil: my sleeps seemed lighter.

[SlowVeil]

my family took me back to the bone massage, the eye lid twitching stopped when I was in the herbal infrared sauna and massaged around my eyes.

 

I suspect that the eyelid twitching has something to do with temperature and blood circulation. maybe the herbal also played some part.

 

still quite scared that I may develop dementia in my later life because of this. My body might not recovered completely from the meds in 2018 and 2019 and the symptoms showed up might due to this year's assault.

 

My doctor suggested me to try azelastine nasal spray to treat mucus in my nose, but after seeing its warning about do not use it along with meds that can impact CNS, I think I will not try it. Loratadine/Claritin is also suggested, but it's another antihistamine and it also has a warning about not to use it along with meds that can impact CNS, again not going to touch it.

 

maybe my body was not fully recovered since 2019 and it just got more damaged this year so substantial symptoms showed up. Need to rethink about my intervention plans:

 

• not taking any supplements as of right now. seems like starting and stopping fish oil omega-3 don't do much. Currently I am not coughing much, and there's no more pain and no more yellowish mucus, only post nasal drip
• stopping the patent medicine today(08/17) after my last dose.
• I also consider resuming going to traditional chinese med clinic on Sunday (08/20). maybe not resume the herbal soups yet, just let them check up with me.
• If my inflammation condition continues to improve next Monday(08/22), need to think about the order of resuming mhbot, fish oil, and gingko biloba.
• I have a strong desire of keeping it simple, stable, and slow, but at the same time I feel so many interventions are disturbed because of my inflammation and I have to get them back on quickly to prevent missing the "quick window of intervention"

Feels as if the longer I wait, the more likely my case is going to be severe and irreversible.

[SlowVeil]

Today checked back up with the psych doctor that did the cross evaluation with my neuro doctor. He told me the adverse reactions I experienced in 2018 and early 2019 were a warning from my body that I can't really tolerate psych meds, and this time it's my body "fighting" against the med's toxicity. He firmly believes that I cannot take any psych med and tell me to be patient with my recovery. "deal with it naturally. Acupuncture, massage, traditional chinese med and gentle exercises would help you more. Do not measure your time."

 

Since my problem is impulse-related and likely just my natural personality, I can drink water that contains lithium. He first thought about lithium med because it's the one that can stabilize mood but now after seeing my history he decided no more med for me, and told me a Danish study found out in regions with rich lithium soil, violent crime rate and dementia rate are relatively lower. "med lithium at its lowest dose can still bring up toxicity, but lithium water's dosage is micro so even if you drink in the same amount as your daily hydration intake you won't be easily intoxicated. Maybe you are neurodiverse and lithium water is just what suit how your own brain work"

 

I need to think about all of these. It's taking a lot of processing power in my brain. but my family seem to be really buying into the lithium water as they already ordered 2 boxes of lithium water online.

[Shep]

@SlowVeilI would tread cautiously. 

 

We have a thread about this here: 

 

Lithium Orotate

 

 

[SlowVeil]

12 hours ago, Shep said:

@SlowVeilI would tread cautiously. 

 

We have a thread about this here: 

 

Lithium Orotate

 

 

Thank you for pointing to this thread. lithium orotate seems to have a relatively larger amount of lithium than lithium water, but I agree I should tread cautiously. Again I would start in small amount first(maybe just 1 bottle a day) instead of completely replace it with my water intake.

[SlowVeil]

looks like the lithium mineral water that my family ordered contains 0.2-0.5mg/L lithium, if I convert them to μg/L it's 200-500, looks way higher than what these studies indicated: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5710473/  and  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7576670/  but still way lower than what lithium orotate.

 

maybe lemme do some research about the water's source and see if there's any studies in chinese that found some regional differences related to lithium.

[Shep]

@SlowVeilAre you able to post a picture of the label on the lithium water bottle? 

[JanCarol]

How about this - instead of drinking it straight, pour a bit into your regular water.  Taper it in - starting with maybe 1/4 bottle a day, and build up to a bottle?  Definitely you want to continue drinking pure water in addition to this, as lithium water will generally use all your hydration to absorb it.  When taking lithium - drink LOTS of water!

I don't know your age - younger people have better kidneys.  The main concern with lithium is clearing your kidneys.  Building up over time, it can cause damage - but at these levels it doesn't seem likely.  This is much less than an orotate supplement, as you observed.

 

Also - what form of lithium is it?  In order to lithium to be digested, it needs to be a salt - like carbonate, orotate, etc.  

 

While it may seem stronger than the orotate - the orotate is not as bioavailable as the carbonate, for example.  Carbonate is nearly 5x stronger than orotate, because of the large size of the orotate molecule.

 

San Pellegrino is 0.2mg/l, but they don't list the form of lithium.  It also contains high levels of fluoride (like American or Australian tap water; I filter that stuff out!), which combined with the lithium can be damaging to thyroid (again, depending on how much you drink, how long you continue drinking it, etc.  These are long term factors.).

 

This is safer than taking a supplement, and at these levels, it is unlikely that you will need blood tests for kidney/ilver/thyroid function. 

 

But the best way to manage your mood is from within, not necessarily with a supplement.  If you can't manage your moods, who can?  I know very little about you - so I'll send you the general link for:

Non-drug techniques to cope with emotional symptoms

 

I hope you see the sun today!

 

Edited August 22, 2022 by JanCarol

[SlowVeil]

On 8/22/2022 at 8:01 AM, Shep said:

@SlowVeilAre you able to post a picture of the label on the lithium water bottle? 

 

It's a natural spring water that's rich in lithium, so i don't think they intentionally inject lithium into the water. contains 535ml water per bottle.

elements translation from top to bottom:

lithium

strontium

calcium

magnesium

silicic acid

potassium

natrium

total dissolved solids

[SlowVeil]

On 8/22/2022 at 11:15 AM, JanCarol said:

How about this - instead of drinking it straight, pour a bit into your regular water.  Taper it in - starting with maybe 1/4 bottle a day, and build up to a bottle?  Definitely you want to continue drinking pure water in addition to this, as lithium water will generally use all your hydration to absorb it.  When taking lithium - drink LOTS of water!

I don't know your age - younger people have better kidneys.  The main concern with lithium is clearing your kidneys.  Building up over time, it can cause damage - but at these levels it doesn't seem likely.  This is much less than an orotate supplement, as you observed.

 

Also - what form of lithium is it?  In order to lithium to be digested, it needs to be a salt - like carbonate, orotate, etc.  

 

While it may seem stronger than the orotate - the orotate is not as bioavailable as the carbonate, for example.  Carbonate is nearly 5x stronger than orotate, because of the large size of the orotate molecule.

 

San Pellegrino is 0.2mg/l, but they don't list the form of lithium.  It also contains high levels of fluoride (like American or Australian tap water; I filter that stuff out!), which combined with the lithium can be damaging to thyroid (again, depending on how much you drink, how long you continue drinking it, etc.  These are long term factors.).

 

This is safer than taking a supplement, and at these levels, it is unlikely that you will need blood tests for kidney/ilver/thyroid function. 

 

But the best way to manage your mood is from within, not necessarily with a supplement.  If you can't manage your moods, who can?  I know very little about you - so I'll send you the general link for:

Non-drug techniques to cope with emotional symptoms

 

I hope you see the sun today!

 

Thank you Jan for your input! someone in a facebook medical injury group told me the lithium in natural spring water is mostly lithium orotate. sadly I can't find it on the bottle but I can tell my family to ask the distributor in our area about it. that taper method looks interesting! I already drank 2 bottles in the past 2 days but I think I am going to try your way for a week since I also restarted the omega-3 fish oil pill at 300mg/day. Maybe 1/2 bottle per day.

 

speaking of san pellegrino, i just took a look at the perrier that im drinking and it also has fluoride, darn.

 

Since the attack of akathisia in Feb this year, I found I have no intolerance regarding food ( and I was very cautious about taking supplements). Even eating spicy food or drinks with sweetener did not make my situation anywhere worse(although I don't do it anymore). And on the other hand, absolutely NOTHING I eat would provide relief, be it some meds that mask symptoms or supplements like Vitamin B6(another psychiatrist suggested it on 04/06 and I took 100mg/day to treat akathisia but after 10 days I don't think it's helping at all so I stopped, the tinnitus that's developed on 4/11 might relate to it but I am not sure). and at that time I knew if the med was not helping it's better to to stop them. When tinnitus started on 04/11 I drank some gingko tea for a week(gingko was listed on myakathisiaexperience as some supplements to avoid while in akathisia) and it did not affect me at all. Either because I'm young(I don't consider being 24 yo is young since around this time many start to develop some social and financial responsibility but one time an nurse looked at me and told me I'm a baby) so I don't have obvious intolerance, or that my intolerance manifests in prolonging my recovery.

 

And thank you for the link. Right now I am trying as best as I can to distract myself from the physical symptoms that's 24/7 with no windows at all.  I found out playing in VR while sitting or laying in bed won't set my CNS to overload and in fact playing VR greatly distract me from my physical symptoms without overexert myself.

 

I am going off for my morning walk. I still need someone to be with me while walking because my limbs may feel very weak from time to time but I think I need gentle walks every other day.

 

Edited August 24, 2022 by ChessieCat
coloured font for easier reading (only some bracketed comment)

[Shep]

8 hours ago, SlowVeil said:

Right now I am trying as best as I can to distract myself from the physical symptoms that's 24/7 with no windows at all. 

 

You may want to stop trying to fix withdrawal with this or that supplement or treatment and simply give your mind/body time to rest. While you say that nothing you eat or take in the way of supplements is causing setbacks (which is great), continuing to try this and that may be taxing your nervous system more than you realize. 

 

We don't know of any supplements besides calming ones such as fish oil and magnesium that help withdrawal, but we do know that a healthy diet, avoiding alcohol and caffeine, gentle stretching, taking walks, and plenty of rest are what members have found to be the most helpful. You can run yourself ragged trying to fix this or simply relax and learn to float and breathe through the symptoms, allowing your nervous system to heal without adding in things that your nervous system must try to adjust to. 

 

Just a thought. Perhaps go for a month without adding in anything or trying to treat anything and see if you feel better. 

 

 

[SlowVeil]

Thank you Shep. I agree that continuing to swing around interventions may taxing my nervous system more.

 

14 hours ago, Shep said:

Just a thought. Perhaps go for a month without adding in anything or trying to treat anything and see if you feel better. 

 

The entire June I tried no intervention and didn't feel much of a difference so I decided once I'm back to my home(a very rough process considering the travel restriction between US and China) I would slowly add interventions.

 

My inflammation symptoms still have some concerning remnants, including yellowish mucus. Since it's going for nearly 3 weeks now I feel the urge to treat it so it won't interfere my daily activities further or develop into something worse(pneumonia but it's unlikely since I am not having any fever). again not using any antibiotics or anti-inflammatory, just drinking customized chinese traditional herbal soups.

 

Now I just relax and distract as much as I can. still hard for me to figure out what excites me as I realize if I got excited(both negatively and positively) my breaths would intensify and some of my symptoms may get temporarily worse until I started doing deep and slow breathing again.

[SlowVeil]

recent few days tinnitus volume increased. Might because insomnia is back again. also getting more ear eax 🤔

 

This morning (8/27) after finishing breakfast felt a brief period with lower abdominal pain, followed by lower back head dizziness. considering that 50% of the squeaky noise in lower back head appear right after my stomach rumbling, I believe this is another sign that taking care of my gut health strongly relates to brain recovery.