Mcat: reinstated Mirt, now coming down again

[Mcat]

Thanks so much for all this info @Faure. If I tried to tackle it myself, I would go with the crushed pill taper over the liquid, but I found it hard to even follow what you said above re the calculations, so I think it's just going to have to be the pricey compounding for me (three degrees including a PhD and a primary school child has better maths skills than me  ). And @hopeful1987, thanks for asking after me. Bit of a setback yesterday. Felt more anxious and got the shakes (an internal CNS shake that started when I reinstated, I expect, indicating kindling, but it's also related to the terrible sleep jerks that started up again when I went back on). So, I'm worried again now whether I made the right choice to try and stabilise on the 7.5 rather than jumping off and switching to Valium/Temazepam, which I know is also a hell realm that would require slow taper down the track, but the big difference between most people here and me is that this drug gives me a side effect that stops me sleeping and benzos (which I currently use very sparingly when desperate) do seem to settle the jerks. Last night, I was more anxious and found it harder to settle initially than I normally would (despite being exhausted still from the recent insomnia roller coaster and sedated by the Mirt), but I could have slept except every time I was about to drift off a big jerk woke me up. I'm at the 9 days post-jumping down from 3/4 a 15mg pill (I don't know what that mg dose is) and one night on 15 to my safety zone of 7.5, so it's possible this is a little wave at the point where the bigger doses are now out of my system, but given I've still only been back on for 2.5 weeks, and the jerks are stopping me from sleeping, I'm now wondering if I should jump ship to benzos before the Mirt gets more of a stranglehold (I was 6 weeks off previously when the jerks stopped). Just not sure what to do. If you've never had these jerks bad enough to stop you from sleeping, it's hard to understand just how impossible they make it and how hard it is to cope with them. 

[hopeful1987]

Yeah thats a tough place to be in with the jerks. I dont have those but i do have insomnia pretty bad. I wouldnt be one to advise you about changing meds but maybe one of the moderators can.

[Faure]

I’m sorry to hear about the jerks it must be so distressing and frightening. If you tag a mod they may be able to offer more than I can, I’m afraid I don’t know enough to make any suggestions. Take care and keep us posted on how you are ☺️

[Mcat]

Thanks, both. I don't think the mods have experience with the jerks, either. The protocol here is to 10% taper and not jump off from an AD to benzos (and I get why on both fronts), but that doesn't really help people who are getting intolerable side effects. It's not always the jerks per se, but I'm now 10 days trying to stabilise on the 7.5 and still all over the place, and it's crazy-making. I think I must be pretty kindled because I'm having issues I've never had before (like this internal shaking ever since I reinstated (too high, I now realise, following bad dr advice), which is different but feels related to the jerks. I had a few good, solid nights like I used to get reliably on 7.5, but then one bad night because of the jerks being bad and waking me up, then one good night, and then last night was bad again, but not because the jerks woke me up; just because my CNS is rooted and though I went to bed exhausted and so sleepy I couldn't keep my head up watching telly, once in bed I lay there rattling internally unable to settle. I don't understand why one night is good and gives me hope of stabilising and the next not. Is this the kind of insomnia you get @hopeful1987? I'm struggling to see the point of staying on the drug and doing a long-winded 10% taper if I feel more or less on it like I did when I came off it. This morning, I got so hysterical - anxious and angry about what's happening to me despite all my best efforts (all day I try to do the right things, keeping myself calm, meditating, gentle exercise etc., but more and more work keeps getting piled on me that I don't have the option to refuse and I don't know how I'm going to cope with it under these circumstances of what seems like a failed reinstatement so I resorted to taking some Valium, which I generally avoid doing, but I'm not sure if that even helped. I feel like I'm beyond help and that no meds work reliably for me anymore, and I'm looking at a very real prospect of becoming non-functioning, losing my job, and ending up homeless (trying not to catastrophise, but I don't know how much longer I can keep fronting up to this demanding job like this - I'm a very strong, resilient person, but I feel I'm reaching my limit and am breaking). I'm also - now that I'm aware this can be a factor - wondering if my inability to get a 100% perfect dose each night (where I live, you can't get 7.5 pills, only 15, so I have to split; I try to get as accurate as possible, but I know there are slight variables), so I'm wondering if I should maybe go to the compounding now, staying on the 7.5, even though that too could be de-stabilising because at least I'd be sure of a very consistent dose. @Gridley - you welcomed me when I first signed up. Do you have any words of wisdom on where things currently are? 

[hopeful1987]

I dont get the jerks like you, but i do have bad insomnia. I struggle to fall asleep and stay asleep. Last night i went to bed at 10:30, but didnt fall asleep until after 2 and only for an hour, then woke up, and dozed off for maybe another 2 hrs. So, i do know the horrors of insomnia, but im sticking to the advice on here because its all i have. Ive been back on mirt for 7 days and had 3 good nights and 4 poor nights, so no consistent for me either. But im trusting and hoping that my sleep will stabilize soon. 

[Mcat]

Yeah, I'm struggling to have faith in that atm. Just so ground down by all this. It'll be 3 weeks tomorrow since I went back on Mirt and 10 days since I stopped sliding up and down between 7.5 and 15. When I sleep well and can muster some hope, I'll stabilise, I do okay, but when I don't, I have almost no ability left to cope anymore because this is month 3 of this odyssey and having a massive workload that would be challenging at the best of times is the last thing I need. People say to try not to stress and lighten the load, but what if you can't lighten the load? Not everyone is in a position of choice. Losing the will to live. 

[hopeful1987]

I also flip flop between hope and hopelessness. Ive been in it 3 months too, but 8 days on reinstatement. Youre definitely in a tough spot with work, but maybe one of the mods can advise your further.

[StillChill]

I totally understand everything you’re going through @Mcat It’s crazy because it’s almost the same as me rn. I’m on 22.5mg Mirtazapine/Remeron, have the same jerks that you get as well, they’re the absolute worst! I feel like I could handle anything else. Trying to come down off 22.5 is going to take some time, but I was able to get off Olanzapine that was prescribed for a few weeks to combat the jerks I was having. 
 

I also have had the same intrusive thoughts, I wake up at the same time ever morning between 4-5 and can’t go back to sleep. It’s been really challenging and I don’t know what to do next. 

[Mcat]

Yes, there seem to be many similarities in our case - I see your nightmare started in 2021, like mine (but I didn't end up starting this meds roller coaster till early 2022). For me, and I expect the same for you, it's all about sleep. If I have a reasonable night (in current terms), I can function (albeit, I look the worst in living memory, and I think I've aged about 5 years in the past few months) and muster some hope and do all the good things (walking, yoga, meditation etc.), but if not, and especially if I have a bad night before a big work day or a few in a row I start losing it. It also gets to me how crazy making it all is, how one night it's the jerks keep me up, and the next they're not the problem; I just can't sleep with no apparent rhyme or rhythm to any of it. The mods don't seem to be weighing on my case at this stage, and I think they are more about helping people taper, and I'm not at that point. Anyway, it's nice to have contact with someone else going through it. I really hope we both do stabilise. 

[Mcat]

Hey @StillChill the jerks are a lonely experience, aren't they as only a minority of us seem to get them, and they are much worse than they sound, so people who don't get them don't get it (I've seen people who do get them saying they're getting suicidal from it and I know what they mean). I am comforted by knowing the drug causes them, and the good news I'm here to share with you is that their severity does seem to be somewhat dose-dependent (the higher I went, the worse they got) BUT and here's the insult upon insult, they are both side effect of the med AND a WD symptom, so for me, they get worse the higher the dose, and when I come down (or, say, on a night when my half might be slightly smaller - because I have to split a 15mg pill; where I live they don't sell 7.5, and I cannot face the weighing stuff because I am *special* when it comes to numbers and maths). Talk about a lose-lose. The other thing I know for sure is that they get worse the more anxious, stress, or sleep-deprived I am, which again is a head**** because this drug, when you're not stabilised and sleeping on it, ramps up all of that. So, please join me and @hopeful1987 in the Mirt misery pity party (that was a joke; self-pity rarely helps, but lordy, it's hard not to go there some days). It's some kind of solace to know there are others dealing with the same issues. I'll go look at your intro to see if you're tapering yet and get some background. 

[StillChill]

@Mirt yeah I know they’re a withdrawal symptom too, same with internal buzzing/shaking, that I’ve tried to see numerous docs about, and they associate it to anxiety, which it is in a way. It’s all so difficult and frustrating! I only have 15mg tablets too. Where are you located?
 

I’m trying to get info on how to compound. I’m barely sleep rn, and need to get my wits together because I might start getting loopy from sleep deprivation soon. When I went through alcohol withdrawal, I was surprised I got withdrawal because I didn’t consider myself THAT heavy of a drinker. I guess I’m just genetically prone to this. I tapered way too quickly and experienced some rapid WD, including INTENSE jerks that would throw me out of bed. My brain went into shock and eventually, after about a week of intense insomnia and no sleep, I could sleep normal again. 

[StillChill]

2 hours ago, Mcat said:

The mods don't seem to be weighing on my case at this stage, and I think they are more about helping people taper, and I'm not at that point. Anyway, it's nice to have contact with someone else going through it. I really hope we both do stabilise. 

Yeah, it’s unfortunate a bit. I’m thankful for them and their help where they can, it’s just not promising when it seems no one can help. 
 

out of curiosity, have you considered that maybe you’re experiencing WD from the GABA affects of the Benzos? I do associate my jerks with my alcohol withdrawal, and now when I withdrawal from anything they are kindled in, so my body thinks I’m dying again and keeps trying to wake me up(cool survival technique for our bodies, but also not very helpful when it’s adding to the suffering.) 

[Mcat]

Yes, you're right about some of them being more sensitive to start with. Have always felt like I have a highly-sensitised nervous system (complex trauma history going way back to childhood etc) and am 'high-strung', compounded by highly stressful life circumstances these past years. And yes, I also get the internal buzzing/shaking. It was more of an occasional, milder thing prior to all this but it kicked in more noticeably and relentlessly when I recently reinstated. Good times. I'm in Aust, and it's frustrating to not be able to get a 7.5 tab. I wish I was better at understanding how to do the calculations as I'd powder the pills using a digital scale and try to get a more accurate dose that way, but I think getting it done by a compounding chemist is my only option. I'd go to that now, but for the warnings about changing the delivery form when trying to stabilise. Re benzos, yeah, I did consider that, but I stopped using them months ago back (apart from the very occasional night here or there when I'm not sleeping and desperate) so I doubt that's still a huge issue. Also, when I do take them, they seem to have little impact/make all that much difference. 

[StillChill]

@Mcat are you like me, where you start to feel better in the evening? Like a few hours before your next dose? Then you feel better an hour after dosage, and are good until 4-5 in the morning? 

[Mcat]

Not really to the feeling better/worse pattern, but then I'm on a much lower, off-label dose, but yes to the am wake up. I typically wake up after 3-5 hrs sleep on a bad night and then there are also those very fun nights where I struggle to get to sleep in the first place because of the jerks. 

[Faure]

8 hours ago, Mcat said:

It also gets to me how crazy making it all is, how one night it's the jerks keep me up, and the next they're not the problem;

We stabilise in a pattern that’s called windows and waves which may be why some nights are good (a window) and others bad (a wave). You can read more about that here.  It’s really good news that you are having some good nights. 

 

8 hours ago, Mcat said:

The mods don't seem to be weighing on my case at this stage, and I think they are more about helping people taper, and I'm not at that point.

They will help but this is a very busy forum. I have reported that you would like some input.  

[Altostrata]

The moderators have experience with jerks of all kinds.
 

Quote

 

7.5 (3 nights WD insomnia) > stabilising and sleeping on 7.5.

 

 

You have been taking 7.5mg mirtazapine consistently since what date? Please add the date to your signature.

 

What is your current sleep pattern? How has it changed since mid-February?

 

Please break up your posts into smaller paragraphs, they're easier to read, thank you.

[Mcat]

7.5 holding since March 4 (have added to signature). I know you said it could take a few weeks to stabilise, and hopefully, I will. I'm just struggling to come to terms with sleep on this dose being patchy when it never was before and tough on the nights/days after when I don't sleep, but I realise this is a new normal I have to come to accept. Current sleep pattern is all over the shop. Had 3 good nights over last weekend, then a rubbish night Sun when jerks were bad and stopped me sleeping, then a good night, then a couple of bad, then good. Mid-Feb is when I was off the Mirt, and sleep was again all over (weirdly, I had a few good nights even then, but many more vicious 1-2 hr sleep nights).

 

When I first reinstated, the Mirt knocked me right out (with lots of day fatigue) for the first 10 days or so, but then I complicated things by sliding up and down the dose before settling back on 7.5. So, I suppose I just have to be patient, which is hard to do when it's been months since you slept reliably and you have a big demanding work life. 

 

Thanks @Faure, appreciate the support. I do get the windows/waves concept - what I referred to as crazy-making was not so much that as why the jerks can be not a problem/not too bad one night and the next bad enough to stop me sleeping - when I'm on a stable dose. Probably to do with my stress/anxiety levels because though I know the med sets me up for them, anxiety worsens them. It's just some nights when it happens; I don't feel more anxious than other nights. Go figure. 

[Altostrata]

Yes, waves and windows mean you have good patches and bad patches. We expect the good patches to very slowly become more frequent.

[Mcat]

Okay, so I will bite the bullet, buy a scale, and start powdering because I need to know I'm getting the correct dose. Before coming off Mirt in Jan, I never had trouble with the slight variations between two halves of a 15mg tab, and I don't know if I do now or if I'm just still in a degree of WD/stabilising process after sliding up and down dose before settling on 7.5 2 weeks ago. I DO know I'm far more sensitive now and that things that weren't a problem for me before are now because I'm kindled. I'd had 3 good nights, but last night back to about 4.5 hrs and waking with internal shakes and only another hour or two of patchy light sleep thereafter with a few jerks. I did have nightmares, so it's possible this was induced by stress, but I also took the slightly smaller half of my split, so I need to change how I dose to rule that out as a factor.

 

@Faure I'm very freaked by the numbers, as you know, and so unconfident about the calculations and worried I'll make a mess of it and do myself more damage if I try to taper this way, but I figure I can at least manage to powder the pills for a 50/50 split to get an accurate 7.5 as a start - even I should be able to manage that. I have a quick question for you: if I don't want to use capsules (because I have shaky hands from the shakes/jerks and would struggle to get the powder in), can I just put the powder into some milk or something and ingest it that way?

[StillChill]

@Mcat I feel you on the measuring and assuring an equal dose because I’m at split pill dose myself. I got a scale to try and make mine more accurate, but with the scale I’ve even noticed inaccuracies between whole pills/my scale, so I might need to buy a more accurate scale than the Gemini one. Makes me wonder about liquid dosing too, the droppers in my experience with other things, are highly variable. 

[Mcat]

Yeah, like I say, it's all so crazy-making. Makes me wonder if there's much point weighing - I looked at the Gemini, but it gets mixed reviews. I'm thinking about getting this one, which I saw recommended on some thread here, but I can't find any reviews for it, and the cost of shipping is prohibitive. I'm also still concerned trying to do the powder taper might send me around the bend (or further around it):

https://www.ishor.com/grobet-precision-pocket-pennyweight-gram-carat-scale

 

PS: I've also just noticed a light rash, kind of rectangular shape, on the front of my neck where the adam's apple is. Any word on whether this might be a Mirt thing (I haven't noticed it ever before, so maybe not). I do worry about how all this is impacting my health. 

[Faure]

Hi, here is a link to the BrassMonkey spreadsheets for tapering. You don’t need to do any calculations, the spreadsheet does it for you once you insert your starting dose:

 

Unfortunately taperoff.co which I used is no longer up. But below the blue Calculations heading at the above link are links to other sheets.

 

It is fine to put the weighed powder into a small container of water (I use mini jam jars), mix it well, drink, and then I refill two more times, mix and drink to be sure I get the residue. I mix with the handle of a teaspoon and also put that in my mouth to get anything on there! 

 

I think you are worrying unduly about the scales. They are working very well for me (and many others here) and as I mentioned before while the active ingredient weighs 7.5mg the pill will weigh 10x this so is well within the accuracy level.  Really, nothing to worry about.  

 

[Mcat]

Thanks ever so @Faure. You use a Gemini 20, yes?

[Altostrata]

The rash might be a contact allergy from something you put on your neck or that is touching your neck, such as a wool scarf.

 

Tapering with a liquid is much easier than dry-cutting and using a scale.

 

 

[Faure]

Quote

You use a Gemini 20, yes?

 

Yes, this is scale I use 

[Mcat]

Thanks - I appreciate your patience and support. I'll take a closer look at that Brassmonkey slide doc when I get a moment. 

[Mcat]

Okay, so I think I'm now stabilising, but I'll hold for a while longer to be sure. Meanwhile, tossing up options re tapering and hoping to get some feedback from mods on my latest thinking (no urgency as I'm not making any moves just yet). At first, I was sure I'd get the compounding chemist to power, weigh and capsule for me because I struggle so much with getting my head around the numbers - even after people have tried to help and I've read all the fine print here on it - but apart from expense (about $85 a month), I don't like the way that locks me into a 10% drop (as it would be way too pricey to get more than one dose adjustment a month) - because I have to stay functional for work, I might need to do more of the Brassmonkey thing (hard to know from this vantage point). So, I'm thinking I might get the compounding chemist to liquefy for me and work with dosing that way because I've heard a few people say that dosing is easier with liquid than power. I searched for info on liquid dosing as I'm hoping instructions indicate it will be less fiddly for me re calculations, but I can't seem to find anything on that. Then again, getting my head around the mg/ml calculations might be just as hard for me. Can anyone provide a link for info on this? 

[Faure]

Glad to hear you are stabilising. Give it a good 4 weeks to be sure and don’t get downhearted if you still have waves. 
 

This is the link to the tapering with liquid thread. I don’t find it very easy to understand at all.  
 

A friend worked out what I should do but is unfortunately too busy to offer any help on here. ChessieCat is the expert on liquids and may be able to help if you message her. Please note she asks not to be tagged. 

[Mcat]

Thanks for this, and yep, that is even more, mystifying to me than the powder dosages (it's the mg - g and the active dose vs. pill weight that does my head in). I think I'll have to go the 10% monthly compounding chemist route when the time comes and hope to handle drops of that %. 

[Faure]

You can get tapering strips from the Netherlands. I expect that is very pricy as well 🙁 it does say they ship worldwide. Might be worth finding out the cost. 

[Mcat]

Thanks for that. It's an odd site - it doesn't give much info about how that method works, and yes, likely to be more expensive than my local compounding. It's so frustrating that this is so difficult for people with a certain kind of brain (like mine) and that there's no medical support. I go back and forth between thinking I'll go the compounding route and thinking I'll try doing it myself (until I get to a lower dose when I'll reduce my drops - then I'll need the compounding chemist). Since my biggest issue is a lack of confidence around the active ingredient/pill weight/drop % calculation, I'm wondering if anyone here might be able to help me with that, at least initially, while I'm getting my head around it and building up confidence. If there's anyone out there who is good at this stuff and who is up for it, please let me know. 

[Altostrata]

On 3/19/2023 at 3:20 PM, Altostrata said:

Tapering with a liquid is much easier than dry-cutting and using a scale.

 

[Mcat]

Thanks, but can you please explain that a bit more? E.G., do you mean the calculations or the process? I like the idea of liquid so long as I can get my head around the dosing/drops because I could ask the compounding chemist to do the liquid for me and control the dose/drops myself (whereas if they powder the pills, they will put them into a capsule, which locks me into a set dose for a set period (having to pay more $ for adjustments). So, I like the idea of using a liquid, but I think I need help from someone better at maths to check my dosage drops before I make them. Also, do you know how long the liquid is good for once made up (because I would, as I say, be getting a chemist to liquify for me). 

[Faure]

This is a brief explanation of what I do to make my own liquid:

 

I already have a spreadsheet of my BrassMonkey slide doses.

 

On Mondays I weigh 4 days worth of powder that I ground up myself.

I measure 20ml of water using a 5ml syringe that a friend picked up at his local chemist.

I tip the powder into the 20ml of water and give it a good, gentle stir.

While the water is still swirling I draw up 5ml of water and dispense into a mini jam jar.

I repeat 2 more times (stirring is key to ensure even distribution of the powder across the water)

I keep the jars in the fridge
I dispose of the remaining liquid (I believe it is important to have more liquid than you need to account for losing it on the way and also so that there is enough liquid to keep the mixture swirling around for the final extract.) I am very suspicious of dregs where the particles settle so make sure when I draw up liquid I draw from the middle of the suspension (not at the bottom). 
This gives me 3 doses to use Mon - Wed 

 

On Thursdays I repeat but because this will do 4 days (thurs - sun) I use 25ml of water and weigh 5 days worth of powder.

 

The general opinion on SA is that homemade liquids last no longer than 4 days and it’s better to be safe than sorry. 

 

This is *really* easy to do and will work for quite some time as I’m weighing 3-4 days worth of powder at a time which means I’m weighing quite a large amount and the scales are accurate at these high amounts. At some point it will be necessary to change my method and when I get there I can share how I do that (as per advice from my mathematical friend who developed this simple method!). 

I have learned through this entire process that it is no good relying on professionals (doctors / chemists) to do any of this for me. I have had to take responsibility for my own well being and learn to do things for myself, with help from this website and said friend! 

 

[Utek]

Hi Mcat,

 

I have been making my own liquid for the last 2 weeks.  I am using Mirtazapine20mg method exactly and it is working well for me.  It is very easy.  There is no pill grinding.