Malbec37: tapering off mirtazapine / Remeron and hit major WD

[Wagen]

6 minutes ago, Malbec37 said:

Hi @Ramonaand @Wagenplease could you take this conversation onto your own threads as otherwise if it goes on too long it just fills up my feed which I like to keep specific to my journey off meds. Thanks!!

@Malbec37, ok, I'm sorry, I'm wishing you the best with your journey! 

[Malbec37]

@Wagenthanks so much! I don’t mean to be rude as I appreciate your input it’s just that what happens In this site if not careful is different people start commenting and then it gets pulled away from the original thread and hard up stop. 
 

As far as tinnitus is concerned I suggest trying to just get used to it and accept it as part of mirtazapine withdrawal...it’ll soon blend into the background and as you heal it will reduce. 
 

there’s some useful mirt withdrawal Facebook groups where you can ask these kinds of questions 
 

getting off mirtazapine is a long and tough journey but it’s doable! 
 

good luck 

[ChessieCat]

1 hour ago, Malbec37 said:

I don’t mean to be rude as I appreciate your input it’s just that what happens In this site if not careful is different people start commenting and then it gets pulled away from the original thread and hard up stop. 

 

I've asked for the inapplicable posts to be moved.

[Ramona]

7 hours ago, Malbec37 said:

Hi @Ramonaand @Wagenplease could you take this conversation onto your own threads as otherwise if it goes on too long it just fills up my feed which I like to keep specific to my journey off meds. Thanks!!

Ok

[getofflex]

I have moved Ramona's posts into her own thread in Intro and Updates. 

[Wagen]

On 3/2/2021 at 10:42 PM, Malbec37 said:

@Wagenthanks so much! I don’t mean to be rude as I appreciate your input it’s just that what happens In this site if not careful is different people start commenting and then it gets pulled away from the original thread and hard up stop. 
 

As far as tinnitus is concerned I suggest trying to just get used to it and accept it as part of mirtazapine withdrawal...it’ll soon blend into the background and as you heal it will reduce. 
 

there’s some useful mirt withdrawal Facebook groups where you can ask these kinds of questions 
 

getting off mirtazapine is a long and tough journey but it’s doable! 
 

good luck 

@Malbec37, no problem, I undestand, I wish you all the best with your journey!

 

This weekend I found an app called Resound Relief where it is possible to mix different sounds and create a personalized sound. 

 

You seem to be able to cope with tinnitus better then me, but I thought I would share it, in case you need it. 

 

Best wishes to you! 

 

 

[sunnysideup69]

Hey @Malbec37,

How are you doing? Hopefully stable. Thanks for your reply on my thread, apologies for not acknowledging it soonit.

 

I'm just down the road from you this weekend, in Chippenham.

[Ramona]

9 minutes ago, sunnysideup69 said:

Hey @Malbec37,

How are you doing? Hopefully stable. Thanks for your reply on my thread, apologies for not acknowledging it soonit.

 

I'm just down the road from you this weekend, in Chippenham.

I m happy u feel better I m in a such dark space lol anxiety never felt before awful thoughts and sleep is a mess less than 3 hours and as a gift they ve decided to end my job contract as a nurse on a covid ward because now I m useless and all thy trauma affected me so bad but I don't care I just want to get better for my kids and myself and maybe one day life will smile back to me and I will find an easier job much love doctors say I need treatment otherwise I will became very ill and I wish I could belive and trust him and finding help but they are all different each one a different diagnosis different meds almost all with awful side effects mirtazapine yes made me sleep made me addicted to diazepam on days to calm down the anxiety given that was extreme so I really don't know if what I feel now comes from  the so called illness worsening or from the whitdraw one said is ptsd another sad is ocd anxiety and panic other said is a mixed state more on the bipolar side but I never had Hugh's mine is an awful inner restlessness on a severe depression and anxiety crazy awful thoughts and no sleep or need to eat I need to survive somehow hug you

[Malbec37]

On 4/3/2021 at 7:08 PM, sunnysideup69 said:

Hey @Malbec37,

How are you doing? Hopefully stable. Thanks for your reply on my thread, apologies for not acknowledging it soonit.

 

Hey sunny thanks for checking in!

 

Yes I'm doing very well and things are very steady and stable. I am going to switch to the liquid mirtazapine next week and hold at 15mg liquid for 4 to 6 weeks and see if there is any reaction. Then I'm going to do a reduction to 14mg and see how I feel. I am excited to get moving again, a little nervous too but I need to keep moving forwards towards my goal of being medication free.

 

My nervous system is still highly sensitive but I'm getting better at understanding what it likes and what it doesn't! For example I had been having one cup of coffee at 7am for a while but my sleep was still a struggle and since I have eliminated this one cup of coffee I fall asleep a lot quicker! It just shows how much we are affected by these meds

 

So I'll keep updating this thread now and again to tell you how I am doing 

 

Malbec x 

[Ramona]

26 minutes ago, Malbec37 said:

 

Hey sunny thanks for checking in!

 

Yes I'm doing very well and things are very steady and stable. I am going to switch to the liquid mirtazapine next week and hold at 15mg liquid for 4 to 6 weeks and see if there is any reaction. Then I'm going to do a reduction to 14mg and see how I feel. I am excited to get moving again, a little nervous too but I need to keep moving forwards towards my goal of being medication free.

 

My nervous system is still highly sensitive but I'm getting better at understanding what it likes and what it doesn't! For example I had been having one cup of coffee at 7am for a while but my sleep was still a struggle and since I have eliminated this one cup of coffee I fall asleep a lot quicker! It just shows how much we are affected by these meds

 

So I'll keep updating this thread now and again to tell you how I am doing 

 

Malbec x 

Love you hope all will go well

[Malbec37]

3 hours ago, Ramona said:

Love you hope all will go well

 

How sweet thanks Ramona

[Gridley]

4 hours ago, Malbec37 said:

I am going to switch to the liquid mirtazapine next week

You may be aware that we recommend a gradual switch from tablet to liquid:

 

3/4 dose tablet, 1/4 dose liquid for 1 week or longer

1/2, 1/2 for 1 week or longer

1/4 tablet, 3/4 liquid for one week or longer

all liquid thereafter 

 

Holding for 4 to 6 weeks after the switch to liquid is complete is a good plan.

[Malbec37]

Hi everyone 

 

Quick update: I transitioned to 15mg liquid homemade mirtazapine 4 nights ago and very happy to say I have now stabilised! The first two days were very tough with an increase in all symptoms and I was close to going back to the pill...but I stuck it out for a third night and did a lot of work on my anxiety and fear (which was making things worse) and now I feel much better so I'm relieved!

 

It's a big step for me as I've been holding for 15 months now and previously tried unsuccessfully to transition onto the prescribed liquid with no success

 

So now I'll stay on 15mg liquid for a couple of months to get very steady...it's also my 40th birthday on 18th June so want to be stable for that! Then I'll make a reduction after that...probably about 6% down to 14mg and see how I fare 

 

Definitely feeling positive right now 

[Ramona]

8 minutes ago, Malbec37 said:

Hi everyone 

 

Quick update: I transitioned to 15mg liquid homemade mirtazapine 4 nights ago and very happy to say I have now stabilised! The first two days were very tough with an increase in all symptoms and I was close to going back to the pill...but I stuck it out for a third night and did a lot of work on my anxiety and fear (which was making things worse) and now I feel much better so I'm relieved!

 

It's a big step for me as I've been holding for 15 months now and previously tried unsuccessfully to transition onto the prescribed liquid with no success

 

So now I'll stay on 15mg liquid for a couple of months to get very steady...it's also my 40th birthday on 18th June so want to be stable for that! Then I'll make a reduction after that...probably about 6% down to 14mg and see how I fare 

 

Definitely feeling positive right now 

So happy for u is been my 42 few days ago has been so far the hardest year of my life in which i ve lost all job friends life family and joy now I m tapering off benzos asked the doctors to help and they did prescribing other meds as usual I ve aske how I can wean off he said is not need it you can taking it just because they know how to put people on but no one knows the hell and the trauma of getting out I thi k what we ve gone to treat comes out ten times more anyway is a. Long fight is going through hell and hope I m gonna make it as u did I find the liquid with ups and downs but soon mate we will be free maybe of all this i hug u tight keep going don't look back your brain will tell u lies and scary stories and your body will be in so much pain but slowly will recover so don't belive it don't get scared we will heal

[Ramona]

Just now, Ramona said:

So happy for u is been my 42 few days ago has been so far the hardest year of my life in which i ve lost all job friends life family and joy now I m tapering off benzos asked the doctors to help and they did prescribing other meds as usual I ve aske how I can wean off he said is not need it you can taking it just because they know how to put people on but no one knows the hell and the trauma of getting out I thi k what we ve gone to treat comes out ten times more anyway is a. Long fight is going through hell and hope I m gonna make it as u did I find the liquid with ups and downs but soon mate we will be free maybe of all this i hug u tight keep going don't look back your brain will tell u lies and scary stories and your body will be in so much pain but slowly will recover so don't belive it don't get scared we will heal

I ve stopped mirtazapine all toghether 5 month ago but I m still caught on diazepam and I sleep with melatonine 10 mg from us pharmacy it helps with 6 hours of sleep anyway during the day the rushes of adrenaline are tough and the anxiety is at the top the crazy scary thoughts are hightened I put music on loud and pray a lot and do lots of midfulneas one day this will be gone mirtazapine left me with a brown mark on my skin that is painful around my liver I don't even want to know what damage did inside few days ago the doctor repriscribed to me I said ok I just wanna go out this hell whithout meds and doctors what I had before anxiety and depression was far much tollerable that the hell I m in now so I hang on hope 

[Ramona]

5 minutes ago, Ramona said:

So happy for u is been my 42 few days ago has been so far the hardest year of my life in which i ve lost all job friends life family and joy now I m tapering off benzos asked the doctors to help and they did prescribing other meds as usual I ve aske how I can wean off he said is not need it you can taking it just because they know how to put people on but no one knows the hell and the trauma of getting out I thi k what we ve gone to treat comes out ten times more anyway is a. Long fight is going through hell and hope I m gonna make it as u did I find the liquid with ups and downs but soon mate we will be free maybe of all this i hug u tight keep going don't look back your brain will tell u lies and scary stories and your body will be in so much pain but slowly will recover so don't belive it don't get scared we will heal

I didn't feel much damage from the mirtazapine at that point cause the doctors in Italy put me on gabaoentin and depakote and they took it out as they said I ve got a mixed state induced by antidepressants anyway is gone whothout feeling it and after 30 days I took off the other 2 now left with 5 mg of diazepam and that s a rough ride

[Malbec37]

Hello friends and whoever is out there reading this 

 

My update: I ended up giving up on the homemade liquid after one week...I was just feeling awful and thrown back into waves and felt very bad. I know I posted on here that things were settling but that didn't last and in the end I decided to go back to tablets to get stable again....I also really hated the whole process of making this liquid each night so I am glad not to be doing that! 

 

I am going to take a bit of time out to be as stable as I can be for a few months...it's my 40th birthday coming up so would like to feel good for that and also a couple of small festivals I want to go to.

 

So the only option left really is to cut and measure doses. I know a couple of long term users of mirtazapine who came off in this way so I am going to try and make it like this as it is clearly hard but possible. I believe in my heart that somehow it will all be ok in the end.

 

I have come to think that possibly my CNS is kindled over the long term due to the many abrupt changes I have made in the last 18 years to my meds without realising the consequences....this includes a previous CT, switching meds 3x, coming down quickly over one month to 0 etc....so it's possible that the reason I struggle so much is due to a kindled CNS...has anyone got any thought on this?

 

Regardless life goes on and I will keep moving forwards step by step 

 

Thanks all

 

Malbec x 

[Ramona]

1 minute ago, Malbec37 said:

Hello friends and whoever is out there reading this 

 

My update: I ended up giving up on the homemade liquid after one week...I was just feeling awful and thrown back into waves and felt very bad. I know I posted on here that things were settling but that didn't last and in the end I decided to go back to tablets to get stable again....I also really hated the whole process of making this liquid each night so I am glad not to be doing that! 

 

I am going to take a bit of time out to be as stable as I can be for a few months...it's my 40th birthday coming up so would like to feel good for that and also a couple of small festivals I want to go to.

 

So the only option left really is to cut and measure doses. I know a couple of long term users of mirtazapine who came off in this way so I am going to try and make it like this as it is clearly hard but possible. I believe in my heart that somehow it will all be ok in the end.

 

I have come to think that possibly my CNS is kindled over the long term due to the many abrupt changes I have made in the last 18 years to my meds without realising the consequences....this includes a previous CT, switching meds 3x, coming down quickly over one month to 0 etc....so it's possible that the reason I struggle so much is due to a kindled CNS...has anyone got any thought on this?

 

Regardless life goes on and I will keep moving forwards step by step 

 

Thanks all

 

Malbec x 

Hope all will go well love you 

[getofflex]

On 5/17/2021 at 7:43 AM, Malbec37 said:

I am going to take a bit of time out to be as stable as I can be for a few months...

This is an excellent plan. 

 

On 5/17/2021 at 7:43 AM, Malbec37 said:

I have come to think that possibly my CNS is kindled over the long term due to the many abrupt changes I have made

You are in good company.  Many of us here have done the same, including me.  

[Malbec37]

On 5/19/2021 at 8:53 PM, getofflex said:

You are in good company.  Many of us here have done the same, including me.  

Do you think it’s still possible to get off these meds with a kindled nervous system? Do you have any advice? 🙏

[Ramona]

11 minutes ago, Malbec37 said:

Do you think it’s still possible to get off these meds with a kindled nervous system? Do you have any advice? 🙏

I feel awful too because this whidraw brought me in so much fears agitation and awful thoughts that it seems I m possed by some evil  spirit I do hope the restlessness will calm down and those horrific thoubgts will go away I hug u we are gonna make it and survive this and will be left only a nightmare of the past I do hope this 

[getofflex]

13 hours ago, Malbec37 said:

Do you think it’s still possible to get off these meds with a kindled nervous system? Do you have any advice? 🙏

Yes, absolutely, it is.  My suggestion is just to go extremely carefully, and slowly.  I'm getting off my meds, and I have a kindled nervous system.  Many of us on here have a kindled nervous system.  

[autimom4ever]

Getofflex,

 

I think we are in similar situations but mine is gabapentin and visteral.  
 

I stopped cymbalta in 2012 and klonipin in 2016.  I reluctantly started gabapentin and visteral in 2016 for the K wd.   It took me 18 mo to recover from K wd.   
 

2 years ago I started to taper the gaba and visteral.  Did great during the 2 year taper but crashed about two months after my last dose.  I felt like my benzo withdrawal was back.  Restarted the visteral at a higher dose (from 25 a 50g a day) and tried to hold off on reinstating the gabapentin.  But gave up in March when I became suicidal.  
So my doc reinstated me at 400 a day (up from 300).  So now I’m kindled on both 
 

I’m no longer having akasthesia or nausea but I continue to have severe weakness/ fatigue, adrenaline rushes, reactive hypoglycemia, dizziness, food intolerances and panic.   I have lost a lot of weight in this.  Weight I can’t  afford to lose 

 

I see you are also on thyroid replacement and HRT.  I am as well.  
 

I kind of wonder if our hormones are contributing to our symptoms and making our withdrawal worse?

 

I can’t work and have severe exercise intolerance.   I’m so scared I am a lost cause.   
 

 

[Ramona]

On 5/21/2021 at 7:23 AM, Ramona said:

I feel awful too because this whidraw brought me in so much fears agitation and awful thoughts that it seems I m possed by some evil  spirit I do hope the restlessness will calm down and those horrific thoubgts will go away I hug u we are gonna make it and survive this and will be left only a nightmare of the past I do hope this 

I hope u ok I m. Not gonna make it as soon as I try to stop all the hell broke loose again 

[sunnysideup69]

Hey @Malbec37, sending good wishes.

Have you settled down again now or still having windows/ waves?

[Ramona]

Oh my love I happy u feel better I m. Not ok it looks like this depression is a bipolar mixed state that I never knew I had it and it doesn't go away so I m. Still looking for a doctor to help me this illness killed me 

[Malbec37]

On 6/21/2021 at 12:38 PM, sunnysideup69 said:

Hey @Malbec37, sending good wishes.

Have you settled down again now or still having windows/ waves?

 

Hi @sunnysideup69thanks for checking in! I'm doing pretty well today...I've been mostly stable for some time now but yesterday I dropped to 14mg from 15mg and, aside from a patchy night sleep, I feel pretty good today which is nice. I tried the liquid routes but my body didn't like it so I've been using the gemini scale to cut and measure and feel much more confident about that method...it only took me one hour to prepare 3 weeks worth of 14mg.

 

So all in all I'm doing ok and, although a long road ahead, I'm trying to take it one day at a time and not look too far into the future.

[Ripley]

Hi @Malbec37

I hope all goes smoothly for you at 14mg and it's good you've found a method that feels right.

Onwards and downwards! 🙂Rx

[Ripley]

Hello @Malbec37

 

I was wondering how you were getting along? Did the 1mg drop go OK and was your sleep OK? What are your thoughts on the next steps?

 

I hope things have been going well for you. 

 

Rx

[Malbec37]

@Ripleythanks so much for thinking of me 

 

I’m now on 13mg….I dropped by a mg to 14 initially and definitely had some tough days with usual symptoms of insomnia, low mood, anxiety….but I had plenty of better days too. 
 

I’m just very fragile and find things that I used to find quite straightforward much more challenging….like social things in particular and going away from home Is hard 

 

So I dropped again after 1 month on 14mg down to 13mg and been here 4 days now….I feel ok today, slept better last night which, as you well know, makes a big difference. So holding for now and letting my system get used to the new level 

 

I have managed to get hold of the prescribed liquid again so I think I’ll give that another try as cutting and measuring is just not very precise and I’m very sensitive 

 

So I keep going, trying to practice acceptance and live day to day, try not to get too weighed down by it all 

 

making progress which is the important thing 

 

Malbec x 

[Ripley]

Hello @Malbec37

 

I'm pleased to hear your update - it sounds very positive and how satisfying to see the dose reduce by whole milligrams! It seems like your symptoms have been manageable but not absent. You could always reduce by a little less next time and see if it's easier for you. 

 

I think the liquid will be easier too if you can manage the switch. At least until it needs diluting! 

 

How long did you hold for after you felt stable again? 

 

Hope things continue well for you.

Rx

[Malbec37]

9 hours ago, Ripley said:

it sounds very positive and how satisfying to see the dose reduce by whole milligrams!

Hi @Ripleythanks and yes it is satisfying to see it coming down...I don't feel great today, nauseous mostly and sleep could be better but just keep going.

 

9 hours ago, Ripley said:

At least until it needs diluting

 

What do you mean about diluting the liquid? I think I'll probably get as far as I can then just CT...I do aim to get as low as possible though...I know there are risks from CT at any dose, even a low one, but one psychiatrist in the know said that no-one has any idea how people are going to react to coming off meds...some people can do well from a CT others do a slow taper and feel terrible after despite going slow...some people are on meds for a few weeks and cannot get off and others on them for decades and get off easy...there is NO explanation for what happens that fits everyone.

 

 It is high risk though to CT so for now all I can do is keep getting lower and just push on and do everything I can to support my body 

9 hours ago, Ripley said:

How long did you hold for after you felt stable again? 

 

I held the drop from 15 to 14mg for one month...I wasn't particularly stable at the end but that was because I went away to a festival which was all too much for me and I couldn't sleep and was very anxious. Overall in that month I had many more better days than worse days so that's a positive sign 

 

I'm not rushing but I also have my eye on the goal of being meds free and I'm not going to take forever getting there  

[sunnysideup69]

How you doing today, @Malbec37?

 

[Malbec37]

@sunnysideup69yes not too bad….a week into my reduction to 13mg and not feeling too bad. Had a good sleep last night which is great. One day at a time…

[Malbec37]

Hi everyone

 

Here is my update on progress with tapering mirtazapine:

 

I am now 3 weeks into my latest reduction from 13 to 12mg using the cutting and measuring method. It has been a rocky road with the main symptom being this pesky mirtazapine insomnia which is pretty relentless but I have been finding that I am still able to function on surprisingly little sleep and I keep finding a way to get through my days....things have picked up mood wise recently and last night I had an uninterrupted 7 hours sleep which was wonderful!

 

The other issue I have is IBS issues which could also be affecting my sleep...I am eating well, low histamine diet, using DAO supplements when eating higher histamine foods occasionally or having the odd beer (we do need to have some enjoyment in our lives after all), also using a probiotic....hoping this IBS will clear up in time 

 

I also continue to have weekly counselling which helps a lot and then I am also having a few sessions with a Wellness coach who specialises in supporting people off AD's and this is really useful.

 

I am going on holiday next to see my parents in France and I am going to try and switch again to the prescribed liquid mirtazapine and see if I can settle on this.

 

So there we go....keeping moving forward step by step and doing all I can to not let this process drag me down or ruin my quality of life 

 

Malbec x 

[sunnysideup69]

Hey @Malbec37

How r u doing?

SEnding hugs xxx