Chaos9211: Clomipramine Taper

[Chaos9211]

Hello All,

 

I have been on and off this community for almost a couple of years now and finally when the registrations opened I thought I will join to make my journey more systematic.

 

Originally diagnosed with GAD when I was 18 years old and been through a cocktail of drugs (complete timeline at the end). Over the years, the diagnosis has morphed into GAD, OCD and Depression.

The last drug I was prescribed is as follows

Clomipramine 75mg

Lithium 800 mg 

 

I have been using this for about 2 years now, and in the last 6 months or so I have observed that I have almost unlimited energy, talk a bit too much and struggle with sleep. Specifically I have Nocturnal panic attacks, which keep waking me up and eventually I get tired of the chest tightness, walks, excessive eating at night and finally fall asleep around 3AM. My Psydoc, asked me to lower Clomipramine to 50mg. This is approx 6 months ago, I did accordingly and symptoms of OCD (intrusive images), lack of energy, crying spells etc came with full force. Hence I restored the dosage back waited 6 weeks to stabilize and commenced on a slow taper approx 10/11/2023.

 

A bit more on the insomnia, I don't have trouble falling asleep, its just that I wake up with panic attack, some time restless leg syndrome. I frequently get more than 4 or 5 panic attacks per night. I have been prescribed Valium 5 mg, which I have been taking for over 8 months now. When I have good spell, I take half (2.5mg) so in total I would have been 60% time taking 5mg each day, and 40% time taking 2.5mg. I am fully aware of benzo dependence and try my best to lower it the best I could but currently I don't want to disturb too many things in one go.

 

Back to my primary medication, My first taper step was 12.5mg (I know it is a big jump, but since I had benzo support I thought atleast I will take this first step higher than 10%) right now I am at 62.5 mg Clompiramine. approximately 6 weeks into it. Anxiety is on the rise but manageable currently. There are good and bad days but overall I am managing to do my tasks. Hypo mania / excited state has definitely gone away and I do have some lethargy  and lack of motivation at times. Psydocs wasnt keen on slow taper but I put my foot down that that's how I am going to do it, he is supportive reasonably although he may not believe my approach.  I do get second thoughts if I am doing the right thing or shall I listen to my psydoc and add another medication to the mix to manage. So far I have resisted and am coping. 

 

I intend to stay at this dose for atleast a few more months before taking another cut (definitely within 10% this time). Valium I will continue till I have stability on clomipramine 50mg. Then will decide how to proceed from that point. Long way to go, wish me luck. 

 

2001 - Generalized anxiety disorder (derealization) - Lexapro 10 mg

2008 - Lexapro 20 mg (increased due to post baby blues)

2010 - Lexapro 30 mg

2016 - Lexapro 40 mg

2019-2020 - Lexapro stopped working, rapid tapers and switching to Fluexotine, Effexor, Remeron etc caused severe depression

2020 - Tried TMS but no avail. Suicidal ideation. Ended up in ER

2021 - ECT sessions to treat Major depressive episodes, discharged from hospital with Effexor 225mg but it wasnt managing the situation

2021- God send Psydoc, identified OCD as a contributory cause, put me on clomipramine 75 mg and Lithium 1500 mg

2021 - 2022: Dosage stabilization at Clomipramine 75mg and Lithium 800 mg, overall high energy state with brief almost hypo mania episodes here and there. 

2022-23: Insominia kicked in due to nocturnal panic attacks

 

Nov- 2023: Clomipramine taper started 62.5mg

 

 

 

 

 

[LotusRising]

Hi @Chaos9211

 

Welcome to SA,

 

We are a peer-run volunteer site dedicated to a harm reduction tapering approach in an effort to minimize withdrawal symptoms. We suggest tapering by no more than 10% of your most recent dose each month. It sounds as though you have already read the post  Why taper by 10%?

 

7 hours ago, Chaos9211 said:

2001 - Generalized anxiety disorder (derealization) - Lexapro 10 mg

2008 - Lexapro 20 mg (increased due to post baby blues)

2010 - Lexapro 30 mg

2016 - Lexapro 40 mg

2019-2020 - Lexapro stopped working, rapid tapers and switching to Fluexotine, Effexor, Remeron etc caused severe depression

2020 - Tried TMS but no avail. Suicidal ideation. Ended up in ER

2021 - ECT sessions to treat Major depressive episodes, discharged from hospital with Effexor 225mg but it wasnt managing the situation

2021- God send Psydoc, identified OCD as a contributory cause, put me on clomipramine 75 mg and Lithium 1500 mg

2021 - 2022: Dosage stabilization at Clomipramine 75mg and Lithium 800 mg, overall high energy state with brief almost hypo mania episodes here and there. 

2022-23: Insominia kicked in due to nocturnal panic attacks

 

Nov- 2023: Clomipramine taper started 62.5mg

 

Could you please help us out by adding this information, along with the benzo, to your signature. This will ensure your drug history appears at the bottom of every post, making it more efficient for those trying to assist. Please see How to Create a Signature 

 

These two links will help you to understand withdrawal syndrome:

 

What is Withdrawal Syndrome?

 

Video on Recovery from Psych Drugs

 

As you're tapering, you will find that your symptom pattern will follow The Windows and Waves Pattern of Stabilization  and since the CNS likes stability, we suggest to Keep it simple, slow and stable.

 

7 hours ago, Chaos9211 said:

I intend to stay at this dose for atleast a few more months before taking another cut (definitely within 10% this time). Valium I will continue till I have stability on clomipramine 50mg. Then will decide how to proceed from that point. Long way to go, wish me luck.

 

It sounds like you've got the right idea here. We don't recommend tapering further until symptoms subside. 

 

Here is the information we have on tapering clomipramine.

 

Please post any updates or questions related to your specific situation right here in your thread. It's helpful to keep everything related to your tapering journey in one spot and it helps to keep the site tidy. 

 

And again, welcome to the community  

[Chaos9211]

Thanks Lotus for the links and warm welcome. Just updated my signature sending in a post to see if it works as intended

[Chaos9211]

Hi All, 

 

Thought will update on the progress so far. It has been quite tough almost 8 weeks, but I can see some elements of distress reducing. Took a break from the routine and had some vacations that helped reduce the overall stress and slightly improve sleep cycle / nocturnal panic attacks. 

 

Current situation after approx. 2 months of dose reduction is, derealization is back I would say 6/10, intrusive images 5/10, low energy 3/10. Energy is highly dependent on the quality of sleep I get, some nights when I have less panic attacks it is reasonable, other times a few days go by in struggle.  Winters aren't helping. 

 

Memory is quite bad, I routinely miss out on what people say, part of it is derealization and maybe some part is overall brain fog. I have had at least 2 crying spells, that just came out of thin air. were short lived though. Irritability is high and OCD is maybe 7/10. 

I should have done earlier but I have started to fill the daily symptom check sheet by Dr. Joseph Glenmullen, listed in one of the posts. It sort of gauges the intensity of each symptom on a daily basis, so at least I can form a correct assessment if the symptoms are reducing or otherwise.

 

I am sort of double minded on further dose reduction at the moment. My inner OCD is asking me to do it as it has been  8 weeks, but other times when I am bit overwhelmed I think I should probably wait it out further. 

 

My understanding so far from reading the excellent post by Alto 

I think I should stick to reducing the "accelerator" for now which is Clomipramine in my case. but I do have some gut feel that the lithium is giving me nastiness that if possible needs to be addressed. My serum lithium has been around 0.5 stable, renal and thyroid tests are OK. Physical symptoms that I have had for over a year now are extremely dry mouth (so much so that my tongue is almost permanently sore and cannot tolerate slightest spice), tremors in hand. Also around same time last year when I was slightly "excited" or hypo manic and visited my Psydoc, he increased the lithium to 1200 mg/day Citing the theuraputic range thing of serum lithium. What that did to me was nothing that I have experienced before, extreme fatigue, light trails, extreme confusion when in a market with bright lights and general overwhelm. So I got reduced back to 800 mg/ day within 3 weeks. This impact of Lithium was vividly similar (although more intense) to when I was put on a cocktail of SNRI and TCA in 2019 and experienced a slight "serotonin syndrome". Which has me thinking if lithium is really a "brake"?

 

I guess I want to ask around if someone has experience of what Lithium actually is ? is it a "brake" per se or can it also act as an "accelerator". Cause if I can get some relief by doing a 10% taper on Lithium that may give me some relief from the physical side effects (and maybe anxiety) 

 

This is just brainstorming, I understand the best approach is one drug at a time.

 

Thanks for reading through. 

[Chaos9211]

Hi all, 

 

Still holding on my 62.5mg dose, what I am struggling with is nocturnal panic attacks and every night I keep waking up till 4 or 5 am then I finally manage to get some uninteruppted sleep for 6 hours. This nocturnal panic attack thing is probably not WD related as I had this issue even on full dose since mid 2022. 

This is really putting a dent in my progress and I do have to get good sleep to be able to taper further. I am fairly functional other than this sleep issue.

The panic attack is mostly chest tightness and difficulty in breathing, sometimes muscle cramps and it wakes me up and the only way to break it is that I eat something. I have gained approx 5 kgs in 2 months, and that does cause a significant demotivation in my overall head space. 

 

In order to reduce stress levels, i try to take walks in the day time. (approx 3 ~ 4 days) some socialization where possible, and have tried stretching before sleep as well a couple of times. so far nothing seems to work per se. 

 

will appreciate if there are any tips / insights into how I can get a sound sleep without panic attacks would be much appreciated. 

[Chaos9211]

by the way I did find some interactions and serotonin syndrome like episode of Lithium and TCA. This is in regards to when my dose of Lithium was increased from 800 mg/day to 1200 mg/day and I had this trailing lights and overall confusion state.

 

"SSRIs, sumitriptan and tricyclic antidepressants have been associated with episodes of neurotoxicity, and may precipitate a serotoninergic syndrome - either event justifies immediate discontinuation of treatment"

 

Link of leaflet.

https://www.medsafe.govt.nz/profs/datasheet/l/LithicarbFCtab.pdf

[Chaos9211]

Reduced Clompiramine from 62.5 to 56.25 mg on 22/01/2024. 

[Chaos9211]

Hi all,

 

Some positive updates, have been holding up fine on 56.25mg Clomipramine, a couple of days of low energy but overall manageable. 

 

For the nocturnal panic attacks, I experimented by shifting the dosage of clomipramine from night to afternoon. There was almost an immediate reduction in intensity of the nocturnal panic attacks. Normally I am in bed ready to sleep by 1030 ~ 1100 PM and sleep straightaway but then panic attacks keep waking me up will 3 or 4 AM and by that time my muscles are sore and I finally drift to sound sleep till 9 am. But since I started taking the clomipramine in the afternoon, the intensity and frequency has dropped. I am able to sleep by 1 AM mostly for last 5 days. 

 

Not 100% sure if it is the timing of the med or the dosage reduction but it is definitely helping. 

 

Plan to hold on this dose for another 2 weeks before dropping to 50mg. Then will look into lithium reduction from 800mm to 600 mg in 10% tapers. 

[Chaos9211]

Very low day today, I did some volunteer work (which is close to my profession and I like doing it) for last 2 days, maybe 3 hours a day. It was rewarding but at the same time a bit draining energy wise. lots of anxiety in the morning to go there, but once there it was good. 

today I wasnt planned to go there and have been in bed since morning, hardly have any energy to even go out of the house to absorb some sun. Clear skies after almost 3 months and I still cant bring myself to even stand outside. 

 

Trying hard to change channel, not working at the moment. writing it down is probably helping. 

Anxiety is high 8/10, energy 2/10. lots of catastrophizing about thinking how long will this last, will it be always this difficult. somehow while writing I sort of feel that this is the waves part, and generally I have been in the windows part of the taper since my last reduction. but my subconscious doesnt want to believe that. 

 

I think I am not awfully depressed, I just need this bad feeling to be over and be myself back again. 

 

I coudnt find anything other than magnesium oxide where I live, (I was trying to get glycinate or threonate). Is it worth giving Magnesium oxide a try at low dose? I dont know if that may relieve some of this pain eventually, if not for this reduction maybe for future reductions

 

 

 

[Chaos9211]

Hi All,

 

Mixed update, daytime energy and overall mental space is reasonable. But the nocturnal panic attacks and insomnia resulting from it is really frustrating. I am struggling to sleep till 4AM everyday. Had a consult with pdoc, he has suggested to increase valium to 10mg, to which I wasnt convinced. alternatively he has proposed to add Lamotrigine to the mix. From the forums I can see that some members have benefitted from it to mitigate withdrawal effects as well. I have started 25mg Lamotrigine. pdoc said it should take approx a week to see effects.

 

I have also started Magnesium oxide a few days ago, twice per day will update the signature shortly to reflect the changes.

[Ryder]

Hi Chaos, 

 

I take Clomipromine. Do you find it sedating when you go to sleep ?

 

Also, are you still taking Lithium ??

 

Ryder. 

[Chaos9211]

@Ryder Initially yes but since I have been taking it for over 2 years, the effect is not as much now. In order to mitigate the nocturnal panic attacks, I have switched to taking the dosage in afternoon, because my pdoc suggest it can have a mild activating effect. This is about 2 months now and I dont find any trouble of sedation in the afternoon. Since I switched, I have a slight improvement in the intensity of nocturnal panic attack.

 

I am still taking Lithium 800mg, it does stablise the mood and reduces the hypo-state I get from clomipramine. do have slight tremors and dry mouth, once I stabilize on 50mg clompiramine, I intend to reduce this to 600mg in small steps.

 

A bit selfish but good to know others taking "anafranil" 🙃,  I thought I was alone on this forum. Your taper seems promising so far, do you seem to get withdrawal with these steps?

 

 

 

 

 

[Chaos9211]

A positive update (I think). almost a week since on lamotrigine 25mg at night, my daytime derealization has reduced significantly. Also have been taking 250mg Magnesium oxide twice daily, so 500 mg per day, about 9 days now. I can sort of guess that it is the lamotrigine that has helped more rather than magnesium alone. I maybe wrong. 

 

Nocturnal panic attacks are still there albeit the intensity is much lower, I still wake up maybe 4 or 5 times due to hypnic jerks / chest tightness during the night, but approx 2 to 3 AM onwards I sleep relatively good till 9 AM. I goto bed approx 10PM with sleep onset around 11PM. 

 

Based on previous week and last 3 to 4 days of much improved daytime anxiety and reduction in nocturnal panic attacks, I have reduced the clomipramine to 50mg. I plan to hold it on this dose for 3 ~ 4 weeks. 

 

If things go as per plan than I will reduce Lithium from 800mg to 600 mg in 100mg steps, in the next two months.

 

I have gained approx 8 kg of weight in the last 4 months, primarily due to eating at night after every panic attack (it helps me get rid of the attack). I have been stable enough for the last 4 days to avoid doing that or to just drink water.  So my side quest during the next 3 months is to try to get rid of the additional kgs if I can. 

 

Somewhere in my anxiety prone mind is the 5mg Valium that I still take every night (12 months now exactly), but I guess that it will have to stay there for awhile till I figure out the AD/lithium taper

 

 

 

 

 

[Ryder]

On 2/14/2024 at 6:26 PM, Chaos9211 said:

A bit selfish but good to know others taking "anafranil"

 

I take Anafranil. Seems to be the only brand I can get these days. I also had trouble finding others using the same drug. I have classed it in with other Anti-Depressants that people are using and I just try to go with that. 

 

Can I make one small suggestion. I recommend that you come off the Lithium first while holding Anafranil. Even if the sedation is mild, it should give you something in the evening. 

 

At the moment, I get small withdrawal but have held at around 50mg. Main symptoms being sweaty legs, brain fog, stomach acid when I reduce too fast. Dare I say these are good symptoms compared to how I used to get when I C/T'd off my previous medicine, I would consider the Anafra symptoms mild tapering slowly by 5mg or so. 

 

I am holding Anafranil in order to taper off my Benzodiazine, Valium, and I plan to come off Anafranil last. 

 

 

[Chaos9211]

@RyderYes I used to take Anafranil as well when I was in Australia, probably the only brand available there.  I plan to hold on 50mg while I reduce Lithium, maybe not zero but definitely lower than what I am taking now. because my nocturnal panic attacks are well before I started withdrawing from any drug, I suspect it is something that lithium dosage maybe causing. The only reason I was put on lithium was due to hypo state I was in when my anafranil was increased from 50mg to 75mg. I was never in hypo manic state before taking this drug. which I guess speaks about the efficacy of the drug as an antidepressant.

 

With Benzos i have read on this forum as well as from my previous experience in tapering from other ADs, it can provide a bit of buffer from WD effects. specially around insomnia / anxiety, maybe something you can consider if it suits your particular circumstances. It is a pain getting it from pharmacies though due to being controlled drug and all.

 

Good luck on your journey

 

[Ryder]

6 hours ago, Chaos9211 said:

I plan to hold on 50mg while I reduce Lithium, maybe not zero but definitely lower than what I am taking now.

 

This is good. 

 

6 hours ago, Chaos9211 said:

The only reason I was put on lithium was due to hypo state I was in when my anafranil was increased from 50mg to 75mg.

 

There is no reason your doc should have put you on Lithium. I was given a previous dose between 100mg-150mg Anafra. Yes, it takes 'adjusting' for this drug for sure, weight gain, constipation for sure, but there should not have been a reason to give you Lithium when you transfer to a new drug. I can remember being offered Seroquel for a 3rd time for similar reasons when they increased by 25mg each time. but luckily I rejected it based on previous experience using it. Better off of it. 

 

6 hours ago, Chaos9211 said:

With Benzos i have read on this forum as well as from my previous experience in tapering from other ADs, it can provide a bit of buffer from WD effects.

 

Yes it definitely does at first. However, I think 10 years circa 2014 - is enough for me. I used something called Clonazepam then > Valium. They do work in the first couple years, but after a while it takes its toll. 

 

Sincerely, 
Ryder. 

[Chaos9211]

6 hours ago, Ryder said:

I can remember being offered Seroquel for a 3rd time for similar reasons when they increased by 25mg each time. but luckily I rejected it based on previous experience using it. Better off of it. 

Makes sense, unfortunately I had this badge of ECT's from Gov based hospital and previous MDD experience that brings in all sort of liabilities for the pdoc I guess, not justifying what was offered and what you are saying makes perfect sense.

 

hopefully one day mood disorders are not aggressively tackled by giving these lifelong disabling meds, to a person who is already compromised to make sound decision. Looking back it does make me sad how I lost 20+ years of my life and still have the original GAD for which I was given these meds. 

[Ryder]

I am sorry you went through ECT dude. Makes no sense to me before or after when I used to see patients go in there. 

[Chaos9211]

Thanks Ryder for your kind words.

 

Bit of an update on my symptoms, its been a mixed week tbh, While my hypnic jerks / nocturnal panic attacks are still there, and It takes me upto 5AM or 6AM to goto sleep for 4 to 5 hours. and no napping during day time (again due to hypnic jerks) but probably due to Lamitrogine I am not as anxious during daytime. I am as functional as one can be with such low quality (and quantity) sleep. My DP is reduced, no depressive symptoms as such. Intrusive images are reduced as well compared to before. The hypnic jerks themselves have reduced intensity i.e. instead of a full blown panic attack and fear, I wake up toss and turn, walk or eat something small and go back to sleep for another 30 mins or so.

 

Lack of sleep longterm is not going to end good, I know this from previous experience, hence I did taper up the lamotrigine from 25mg to 50mg as of yesterday. I do not plan to increase it any further. (pdoc had suggested 50mg start and then titrate up to 100mg after 1 week and 200mg after 2 weeks)

 

Also have reduced Lithium from 800 mg to 700 mg per day. (reduced the morning dose by 100mg) as of yesterday. I know its not ideal to do 2 changes at the same time, but I am hoping lamotrigine shall dampen possible withdrawals from lithium. fingers crossed. 

 

Magnesium oxide caught up to me eventually and stomach upset forced me to reduce dosage to 250mg and then eventually 250mg alternate days. I am arranging Mag glycinate from overseas to overcome this issue in the longer run. 

 

 

 

[Ryder]

I believe those jerks will eventually go when you are off Lithium. Yes, they are uncomfortable but they are not dangerous. It is probably your body adjusting. 

 

Getting up out of bed 5am-8am is good. I do the same when I am just laying in bed worrying about things. Usually journaling or drawing or computer games I do, even eating as you suggested. Better than lying in bed. I wait until I am tired and go back to bed after.

 

 

[Chaos9211]

Hi @LotusRising

 

Sorry to tag you but needed some advice if possible. I am struggling with hypnic jerks since before starting the taper, last week has been very tough, 

 

Wednesday: 3 hour sleep from 6AM to 9AM, before that i was up all night with hypnic jerks, legs, arms, neck and back. 

Thursday: 4 Hours 7AM to 11 AM

Friday: 4 hours 6AM to 10 AM

Saturday: No sleep

Sunday: Slept 6PM and woke up 8 AM next day (Thank God)

Monday: 4 hours, 6 AM to 10 AM.

 

I understand the jerks themselves are not dangerous, but I have been having them for over a year now, and it is coming to a point where I cannot have a routine or do my daily chores, and this disability is making me depressed.

My chest and neck muscles remain sore during day time from the jerks from previous night. If this was triggered after starting withdrawal I would be inclined to persevere, but I suspect this might be due to one of the medications Clomipramine or Lithium (just my hunch). From here onwards what shall I focus more on tapering, Lithium or Clomipramine. (at 10% or less per month from Clomipramine or in case of Lithium I think I can drop 10% per fortnight)

 

If there are other mods who can share there experience in this regard it will be great.

 

 

Thanks for reading through.

 

[Ryder]

I don't think it would be the Clomipromine as it is a sedative. I suspect the jerks come from your Lithium. I am saying this as when I cold turkeyed Seroquel, also an Antii-P class drug, that's when I too got Jerks to my body. 

 

Clomip is gonna make make you sleep bruv. 

[Chaos9211]

11 minutes ago, Ryder said:

I don't think it would be the Clomipromine as it is a sedative. I suspect the jerks come from your Lithium.

Hi Ryder,

It is a bit confusing tbh, with anafranil being the strongest possible SRI and a pretty decent NRI action, I suspect it is quite activating, always had challenges with it, whenever the dose was upped I would be so hyper for weeks at end, like positive hyper very less sleep, ability to undertake lot of tasks and no need to take a break type of situation. Arguably I was put on it as I wasnt "responding" to the rest of the SSRI SNRI etc so this "gold standard" was applied to my treatment resistant depression so to speak. Its norepinephrine action i suspect can cause this alertness which doesn't switch off when I am trying to sleep. Lithium on the other hand has always pacified me, any updose would result in lethargy generally till it stabilized. 

 

Who knows what is causing what, as even the makers don't fully understand how they work. Clomipramine does lower the seizure threshold, not sure if that has to do anything with the jerks. Since I have dropped from 75mg to 50 mg clomipramine, my burning mouth syndrome has significantly reduced. Almost gone.

 

 Next drop is due around mid March, just wanted to get my head around which one to tackle. 

 

Cheers

 

 

 

[Ryder]

Always come off the AP first. 

[Chaos9211]

2 hours ago, Ryder said:

Always come off the AP first. 

Lithium is a mood stabilizer not an AP. Similar to sodium valporate. I understand APs are notorious as they act on dopamine receptors causing all sort of dramas.

 

Had a brief stint with zprexa or olanzapine. That "medicine" i wouldnt recommend to my worst enemy.  took 2.5mg for 2 months and it took like almost a year to come off. Added 10kg to my weight.

[LotusRising]

Hi @Chaos9211

 

When did the hypnic jerks start? Do you have a feeling about what drug they're related to?

 

And can you confirm what dose you're taking of the lamotrigine? It looks like maybe you increased it to 50mg Feb 8-21? Does that mean you're still on 50mg?

[Chaos9211]

Hi @LotusRising

 

2 hours ago, LotusRising said:

When did the hypnic jerks start

 Around July 2022, at that time i was only on lithium 800 mg, and clomipramine 75 mg. No tapers started yet. Stable on these meds for around 2 years prior. 

Sametime when i visited pdoc he noticed i was over excited and he suggested to reduce clomipramine to 50 mg as he thought it was the activating drug causing the nocturnal panic attacks and this slight hypo state. I didnt reduce it as i was sort of afraid of going back in depression.

 

1 hour ago, LotusRising said:

Do you have a feeling about what drug they're related to?

At the time i thought they are nocturnal panic attacks due to my moving countries and stress associated with it. Although daytime i was quiet composed.

 

1 hour ago, LotusRising said:

 

And can you confirm what dose you're taking of the lamotrigine

Started lamotrigine 25 mg on 8/02/2024 as advised by pdoc as i refused to increase valium for these hypnic jerks. Then increased to 50 mg 21/02/24. I am still on 50mg. 

 

My daytime dp/dr and intrusive images have significantly improved since starting it.

 

 

[LotusRising]

Hi @Chaos9211.

 

Thank you for those answers.

 

You've mentioned both hypnic jerks and nocturnal panic attacks - do you consider these the same symptoms? Can you describe what happens?

 

When you say you were stable in July 2022, were you sleeping then?

 

What time do you take each of your medications?

[Chaos9211]

15 minutes ago, LotusRising said:

You've mentioned both hypnic jerks and nocturnal panic attacks - do you consider these the same symptoms

Sleep onset, and maybe 5 mins or 10 mins later i get this twitch in a muscle group that wakes me up, when i wake up i am struggling with breathing or chest tightness, i walk around or eat something to suppress it and go back to sleep, keeps happening till morning and by that time i am exhausted and i get some sleep.

I always have thought they were nocturnal panic attacks, but my partner noticed how prior to me waking up i have these muscle convulsions that eventually wake me up. Posturally it helps sometimes if i sort of sleep in a sitting position than lying down.

 

Since starting lamotrigine, the intensity has reduced to almost that of sleep start (hence i call them hypnic jerks)but the frequency is still same and i do wake up. And have muscle soreness, right now its 7 AM here and i havent slept, i have a hot pack on my chest to releive the soreness and pain.

 

15 minutes ago, LotusRising said:

When you say you were stable in July 2022, were you sleeping then

Yep.  Almost 8 hours daily.My sleep has always been pretty rock solid even when i was going through ects and all those drug tapers circa 2020

15 minutes ago, LotusRising said:

What time do you take each of your medications

9AM Lithium 300 mg, clomipramine 50 mg + lamotrigine 50 mg

8 PM lithium 400 mg, magnesium oxide 250

9 pm valium 5 mg

 

I have shifted clomipramine to morning around 6 weeks ago, before that i was taking it at night. Maybe placebo but i feel it has reduced the intensity of hypnic jerks.

 

Also sedatives at night are more frustrating for me as they try to put me to sleep and these jerks keep happening, if i dont have sedation atleast i can stay awake and do something constructive. 

 

May i add that clomipramine was given to me for treatment resistant depression after ects, since i have come back to my home country, due to extended family and stuff there is more psychosocial support Nd i havent really felt depressed in a long time. Anxiety yes is high due to change and general rush of things where i live now. I suspect that i dont need the amount of clomipramine that was prescribed when i was extremely depressed. Case is point is a hypo state that have happened when i was on 75 mg prior to starting my taper.

 

Sorry for the ramble,  hope it is relevant

[Chaos9211]

Just realized my signature does not clarify this

 

July 2022 - nocturnal panic attacks

August 2022- pdoc added valium 2.5mg

 

November 2022- since valium didnt work and pdoc saw me in slightly hypo state, suggested to reduce  clompiramine from 75mg to 50mg

 

Dec 2022- this drop did not go well and i had to reinstate 75mg within 3 weeks

 

Jan 2023- since he couldnt reduce clomipramil   pdoc increased lithium to 1000mg made me unstable similar to serotonin syndrome, light trails, extreme confusion when in public place just overhelm, tapered back to 800 mg within 4 weeks

 

 

[LotusRising]

So, just to confirm, you were stable in July 2022 on clomipramine and lithium? What month in 2021 were you put on these medications? 

 

 

[LotusRising]

10 minutes ago, Chaos9211 said:

May i add that clomipramine was given to me for treatment resistant depression after ects,

It's quite possible that what they're calling 'treatment resistant depression' was a result of the poop out from your lexapro, followed by several drug switches.

 

[LotusRising]

Sorry, I just read back and saw you were stable for 2 years on clomipramine and lithium.

 

I'm perplexed about what's causing the jerks/awakenings. When you had the temporary increase in lithium, were there any changes to the jerks, did they get better or worse?

 

 

[Chaos9211]

16 minutes ago, LotusRising said:

It's quite possible that what they're calling 'treatment resistant depression' was a result of the poop out from your lexapro, followed by several drug switches.

Yes, i wish i had found this site before. I do have retrograde amnesia from the ects. I never had depression originally it was GAD always. But i soldier on, i guess the experience has taught me a few things

 

7 minutes ago, LotusRising said:

When you had the temporary increase in lithium, were there any changes to the jerks, did they get better or worse?

 

Cant really say i noticed much change, 1 week into titration i developed this sensitivity to bright lights, then 2 weeks motion blurring and overhelm, took another week to get appointment and i was back on 800mg. Serum lithium has always been around 0.5 ~ 0.6

 

I know it is difficult to establish which is the most likely drug to cause this, and i really appreciate your care to listen to my story.

 

I have two options, 

1. Reduce lithium further by 100mg as that can be done almost without too much thinking (since lamotrigine can buffer as mood stablizer, if I really need one to begin with) and previous reduction did not cause any mood or other symptoms. I foresee i can do fornightly tapers on lithium.

Advantages: faster, i dont think i needed it, was only added due to hypo state induced by clompiramine

Disadvantage: as dose is reduced, clomipramine action will keep getting stronger meaning more activation and hence higher chance of increasing nocturnal issues

 

2. Stick with clomipramine taper at 10% per month. 

Advantages: my physical side effects (burning mouth syndrome) have improved since tapering from 75mg to 50mg, maybe further reduction in NRI action will help with nocturnal issues

Disadvantage: onset of depression due to too much reduction with lithium still at 700mg.

 

 

[LotusRising]

12 hours ago, Chaos9211 said:

I have two options, 

1. Reduce lithium further by 100mg as that can be done almost without too much thinking (since lamotrigine can buffer as mood stablizer, if I really need one to begin with) and previous reduction did not cause any mood or other symptoms. I foresee i can do fornightly tapers on lithium.

Advantages: faster, i dont think i needed it, was only added due to hypo state induced by clompiramine

Disadvantage: as dose is reduced, clomipramine action will keep getting stronger meaning more activation and hence higher chance of increasing nocturnal issues

 

2. Stick with clomipramine taper at 10% per month. 

Advantages: my physical side effects (burning mouth syndrome) have improved since tapering from 75mg to 50mg, maybe further reduction in NRI action will help with nocturnal issues

Disadvantage: onset of depression due to too much reduction with lithium still at 700mg

 

I would tend to agree with you on this.

 

I guess it depends on what symptoms you think you can tolerate. I guess if it were me, I would stick to clomipramine since to me, this sounds the most activating, which could be driving some of the issues with jerks/sleep. And sleep is sooo important for healing.

[Ryder]

On 2/28/2024 at 4:02 AM, Chaos9211 said:

Had a brief stint with zprexa or olanzapine. That "medicine" i wouldnt recommend to my worst enemy.  took 2.5mg for 2 months and it took like almost a year to come off. Added 10kg to my weight.

 

Yes indeed I took the same drug briefly - on as needed basis. I can confirm there was significant weight gain even after a couple days, it felt like I was eating Pizza every night when using that drug. 

 

On 2/28/2024 at 4:02 AM, Chaos9211 said:

Lithium is a mood stabilizer not an AP. Similar to sodium valporate. I understand APs are notorious as they act on dopamine receptors causing all sort of dramas.

 

Thanks for clarifying it is not an AP, definitely thought it was, but I was wrong. 

 

I have seen your post above about planning your taper. Maybe one drug at a time to start the first few weeks so you will know which drug is affecting you with what symptoms.