Jools44: badly managed reinstatement of mirtazapine

[Altostrata]

Does your current type mirtazapine make you thirstier than the older one?

[Jools44]

16 hours ago, Altostrata said:

Does your current type mirtazapine make you thirstier than the older one?

@Altostrata no I think the increased thirst is directly associated with the high heart rate. 

[Altostrata]

The thirst is an indication your dosage of mirtazapine is too high. It's an adverse effect.

[Jools44]

@Altostrata I don't understand what's happening now. I had 3 rough days last week that started with diarrhoea and a high heart rate and excessive thirst plus insomnia. Then I had one good night's sleep and felt fine for the next 2 days.

 

Now the diarrhoea is back and the thirst and the high heart rate and nausea and Insomnia. 

 

If it was an adverse effect would I have had those two good days? 

 

If it is an adverse effect should I reduce the dose more rapidly? 

[Greatful]

@Jools44

The roller-coaster-ride is never ending🎢.  What's causing what ugh.......

I hope you get it figured out and things settle down🙂

Our bodies are not are own anymore....They are controlled by the drugs💊lol 

But it can get it's self right again😊                 

 

[Jools44]

@Greatful thanks for your reassuring words. 

 

It's all very confusing isn't it?! Is it the drug, is it the food I'm eating, is it the dose, is it menopause, is it my period, is it a full moon?!!! 

 

It all feels like guess work, trial and error. 

Today has been another good day following a good night's sleep but who knows what tomorrow will bring. 

 

I have decided to reduce the dose by 5% and see how I get on. 

 

One of my main drivers in getting off this drug is the total control it has over me. I really hate that! 

 

I hope you're doing okay? 

 

 

[Altostrata]

Many factors may affect your reaction to mirtazapine. Are you taking it on a consistent daily schedule?

 

If you're having adverse effects, do you want to reduce the dosage? Adverse effects generally reduce when dosage is reduced.

[Jools44]

@Altostrata yes, always take it at night at about the same time, give or take half an hour.

 

More than anything I want to be stable and feel better than I do currently. 

 

I am concerned that I updosed massively and this dose is too high, so given I've been on the same dose now for 5 months, I think it's time to try a reduction of 5% and see what happens 🤞I've been worried about reducing because of the horrible withdrawals when I dropped so dramatically, but if I try a slow and steady reduction I'm hoping there won't be any dramas, and hopefully I might actually feel better for being on a lower dose. 

[ChessieCat]

24 minutes ago, Jools44 said:

I think it's time to try a reduction of 5% and see what happens 🤞I've been worried about reducing because of the horrible withdrawals when I dropped so dramatically

 

That is anticipatory anxiety.  Once bitten, twice as shy.  And it is completely normal and understandable.  If we have experienced something bad before then we want to avoid it happening again.

 

You could try a small "test reduction" first, perhaps 1%.  If you are anxious about making a reduction this can add stress and that makes it difficult to know what is withdrawal and what is stress.  If you do okay with the small reduction then you can do a larger one the next time and you shouldn't be as concerned about it.

[Altostrata]

A 5% reduction is also quite conservative.

[Jools44]

@ChessieCat @Altostrata I went with a 5% cut. I had a couple of bad nights about 4 days following the cut, but I get those anyway so unsure if caused by the drop. Otherwise, no big flare ups in my symptoms.......so far!

 

The tinnitus is still there to varying degrees. Some times it's very quiet, other days its loud, but not as loud as back in the Autumn. It's a constant source of irritation but hopefully I'll get used to it. I had a bit of tinnitus before all this kicked off and I got used to that. Or maybe if I'm lucky it will bugger off completely one day. 

[Jools44]

So yesterday was a good example of the unpredictability of all of this. 

 

I made myself some low histamine cookies. Some of the ingredients were novel (spelt flour and cardamon) others not (honey and coconut oil). I'd felt okay all day and then  3 or 4 hours after consuming a few my tinnitus got dramatically worse and I felt a bit odd, mild adrenalin surges I think and came over really tired. 

I thought I was destined for a bad night's sleep but then slept the longest I have for some weeks. 

 

So was last night just another layer of healing taking place or did I react badly to the novel ingredients? It's so confusing. 

 

 

[Greatful]

@Jools44  I guess try it again...lol  the guessing games is always lurking in the corner.

Crazy how you then slept good.......Maybe the cookies helped lol.....

What food's did you cut out?  

 

[Jools44]

@Greatful I've cut out high histamine foods (as mirtazepine) , avoiding gluten and dairy too. So all the good stuff!! 😆

 

Yes you're probably right about trying again and if the same thing happens, then I'll have my answer. 

[Jools44]

@Altostrata during my taper last year I did notice that I was unable to sit still when sitting at my laptop (would constantly be jigging my legs and felt quite restless a lot of the time). There were other things that's required being still and relaxed, like having a bath but I just couldn't lie there for any length of time, I needed to keep moving. My concentration was shot to pieces too.

Having learnt a lot more about withdrawal I can now look back and identify that as a symptom of withdrawal, and specifically akathesia. Would that be correct? I was tapering too fast obviously, but does this suggest that akathesia is going to be a significant concern for me when I next taper? I read so many distressing stories about it (it seems to be the worst of all the symptoms associated with WD).

Is it temporary for most people and is there anything that seems to determine how severe one is likely to be effected (type of AD/AP used, length of time on drug etc)? 

It's not affecting me now at all, I am completely calm and can sit still no problem so it has resolved with reinstatement, which I feel fortunate about. 

[Malbec37]

@Jools44one thing I’ve learnt is not to read too many stories online (I actually barely read any anymore especially on FB) as there are so so many stories of doom and gloom and it’s easy to get drawn into them and feel like they are already happening or will happen to us. I just focus on as much positivity as I can and anything that helps me heal and believe I am healing. Take it slow and take it steady  is the best we can do for our bodies in this process I think. 

[Jools44]

@Malbec37 thank you, I hope you're doing okay?

It is easy to get drawn in to the worst case scenario thinking, and reading the stories of those poor folk who have had it worse doesn't help. 

I was just so ill informed on my first taper I want to be as well prepared as possible this time around, and the restlessness/inability to sit still during my last taper was really apparent and something I definitely need to be more aware of this time around. 

I am doing better in the last few weeks which is a relief and I've even reduced by 5% without any ill effects after a 5 month hold 🥳 like you say, slow and steady wins the race. 

[Malbec37]

Hi @Jools44 That's really great to hear that you are doing so much better and managed a 5% cut without any ill effects! Can ask are you using a liquid or cutting and measuring the pills?

 

I'm doing ok, I did reduce from 11 to 10mg nearly 4 weeks ago and it's been the usual mix of awful insomnia and anxiety...not nice but I've made it through and currently feeling quite a bit better so I've clearly stabilised pretty well now - it does fit the pattern I have of things easing off after 4 weeks. But it was tough so I'm thinking next week I'm going to go with a 5% reduction and just reduce from 10 to 9.5mg and see how that is. Part of me is eager to cut more as I want to get lower by the summer then take a break but it's worth seeing what 5% will be like.

 

It sounds like you're much better informed this time around on how to taper safely...it's a long journey but it will be worth it 

[Jools44]

@Malbec37 pleased to hear you're stabilising now, that must be a relief. The insomnia only makes the anxiety worse and its so hard to function with both. 

 

I've been using liquid mirtazepine since I started a taper in 2020. For the most part it's been fine and much more convenient than the alternatives. My only gripe is that I'm not convinced its efficacy lasts the full 6 weeks it claims to. I think when you're sensitive to dose changes, then even a slight drop in efficacy can negatively effect you, so I tend to ditch the bottle after about 4 weeks now. It comes from a compounding pharmacy so you are at the mercy of their manufacturing accuracy too, but I think I trust their production more than my maths! 

 

However I will have to look at alternatives as I may be moving to a country that doesn't have mirtazepine in liquid form 😕. 

 

I am much better informed this time and will know to go much slower and listen to my body when it starts to react to reductions. I had to learn the hard way though! 🙄

 

I think reducing your cuts to 5% is a good idea. Someone on here cuts by 2.5% at a time but cuts more frequently and then holds. I think it's called the sliding monkey taper or something?? We're all different I guess and have to adapt when our bodies starting asking us to. 

 

 

 

 

[Altostrata]

14 hours ago, Jools44 said:

It's not affecting me now at all, I am completely calm and can sit still no problem so it has resolved with reinstatement, which I feel fortunate about. 

 

Don't worry about akathisia. I don't know if you had it or not. You know more now and you can control your taper.

[Jools44]

So now I've been prescribed antibiotics for a possible UTI. 

 

The UTI isn't severe but I am having to pee 10 or more times a day and constantly have the urge to pee which is unpleasant. 

 

I think the doctor said they were called Nitrofurantoin (Macrodantin, Macrobid 

I've yet to pick them up or start the course but am a little worried. Never had an issue before with AB's but I k ow that means nothing. 

 

[Jools44]

@Altostrata I've been prescribed Nitrofurantoin for a uti. Taking antibiotics is the last thing I want but this uti has been grumbling away for a few weeks now.

 

I've never had this AB before,. Its not a fluroquinalone so should I be too worried about taking it? 

[Altostrata]

You just have to do the best you can. Please let us know how you're doing.

[Jools44]

@Altostrata just a quick update. I took the antibiotics with no ill effects. Just having the usual ups and downs with this drug. I've reduced by 10% in total now, 5% every 3 weeks is the plan if all goes well. Some extra WD symptoms a few days after but bearable. 

[Altostrata]

Good to hear. A few days of mild withdrawal symptoms are okay.

[Jools44]

@Altostrata Hi Alto, 2 weeks ago I started a new bottle of the liquid mirtazepine, ever since then I've struggled with sleep, had a very dry mouth, increased tinnitus and generally felt very flat again. For a good few weeks before this I was feeling very much better.

 

Every time I change to a new bottle it destabilises me and I can't figure out why. I'm drawing up exactly the same dose in to the syringe so my  only conclusion is that the liquid loses its efficacy over the 4 weeks it is open and then when I start a new bottle I'm effectively inadvertently up dosing. The dry mouth is very bad, so much worse than it was before I started tapering. I'm aware it's a side effect of the drug but I'm confused as to why I'm suffering  worse side effects now. I guess there's no definitive answer but I am wondering if I'll ultimately feel better on the lower doses once I get there if the big up dose I did in September is just too much now. Would you have an opinion on that based on your experience ? 

 

@Shep I've read your story and was very encouraged by it. I'm struggling mentally with all of this since I crashed 6 months ago, can I ask how you managed to keep such a positive attitude in the face of such uncertainty and if you have skills you learnt that helped? The thought of years of this truly gets me down and I worry about my ability to deal with it all. TIA

 

[Altostrata]

On 4/14/2022 at 11:20 AM, Jools44 said:

Every time I change to a new bottle it destabilises me and I can't figure out why. I'm drawing up exactly the same dose in to the syringe so my  only conclusion is that the liquid loses its efficacy over the 4 weeks it is open and then when I start a new bottle I'm effectively inadvertently up dosing.

 

That is a reasonable conclusion. If I were you, I'd reduce dosage slightly with this new bottle.

[Jools44]

@Altostrata do you think my ridiculously dry mouth down to withdrawal, or the side effect of the drug? Literally as soon as I sip some water the moisture is sucked right out again, it's quite extreme. It was never this bad before I crashed and reinstated (and messed up everything basically).

Also some days the tinnitus in my head is barely audible, other days it's pretty persistent and accompanied by a general feeling of malaise and anhedonia. Is the fact I have some quieter days promising that the tinnitus is not permanent? It's one of my most bothersome symptoms and i would be happy to see the back of it one day. The hyperacusis is still present but much improved on what it was.

TIA

[ChessieCat]

If you do a general search on the internet for the term:  mirtazapine dry mouth side effect you will see that it is a common side effect of the drug.  It could be that the possible inadvertent increase in dose (from starting the new bottle - and you state that it happened after this) has caused this.

[Warrior]

Hi, @Jools44! I would like to know how your hyperacusis is. How has your day to day been with her? Do you feel like it's something that will pass? Can you give me more details? Thank you very much!

[Jools44]

@Warrior hi there. The hyperacusis has improved vastly in the last few months. I'm still not a fan of loud or high pitched sounds but my nerves no longer react to noise like they did once.

I hope that helps? 

 

[Warrior]

Hello! Thank you very much for replying! I'm glad she got better! I've had hyperacusis for 15 days and I still haven't seen any noticeable improvement. I'll have more patience with this, it's a little stressful because everything is sensitive and loud sounds end up triggering some anxiety. But thank you very much. And yes, it helped me.

[Jools44]

@Warrior yes I believe for the vast majority hyperacusis is a transient symptom like many we experience in withdrawal. I too found it a very difficult physical symptom to deal with and it did take done time to settle but it will eventually for you too.

It's a case of looking for coping mechanism whilst you have it. 

[Warrior]

Truth! I'll be patient one more time, and wait for one more symptom to go away. Thank you very much!

[Jools44]

Things have changed. The hyperacusis has almost resolved but the tinnitus remains. My brain just doesn't work the same way now, I can't process information properly and my emotions are not stable.  Anhedonia has well and truly set it. I don't know if this is caused by the drug or perimenopause but I genuinely feel absolutely nothing now. No emotional connections at all, no joy, no laughter, no hope,nothing other than sadness. Im not really tapering at the moment, just holding. I will try HRT because I don't feel like I've got much to lose. My life isn't very stable but there's not a lot I can do about it. 

The tears come frequently, I'm no pleasure to be around that's for sure. I try and pep talk myself, I try to see the positives but my family are tired of me and we don't talk about it. They don't want to hear about it. They think withdrawal is all in my head and I'm dwelling on it. 

I don't know where to go from here. Unfortunately sucicidal ideation is a daily thing now, would never have the courage to go through with it and I can't admit this to health professional for fear of being hospitalised or prescribed more psych meds. 

Reductions cause more withdrawals. I feel stuck and tired of this. 

Sorry this is the only place I can be honest. 

[Malbec37]

Hi @Jools44sorry to hear hwo bad you are feeling. Perhaps a good long hold would be the best thing to give your nervous system a chance to catch up and then you can then get some positive feelings and emotions back. And you will, you just have to be patient and do everything you can to support yourself. I'm sure you're already doing plenty but we must keep trying and doing all the basics well like food, water, nature, prayer/meditation, time in the sun, rest etc

 

Withdrawal is a very tough journey and I can certainly relate to feeling tired and stuck 

 

Take care x