LinLina: Tapering mirtazapine

[LinLina]

Hi there :-)

 

I've been reading through many posts during the last few month and finally want to introduce myself :-)

 

I am a member of www.adfd.org, a german speaking community for tapering psychiatric medication and it really keeps me up to be able to share with others this difficult time and to contribute to the healing process and the awareness of side-effects and withdrawal.

 

Your site is a great source and inspiration for me - not only for tapering. I found many wise thoughts and great advice in other topics related with mental health and health in general during withdrawal.

 

 

My story:

 

I've been always sceptic about taking psychiatric medication, although I was struggeling with anxiety from my childhood on. So I learned how to cope with my inner stress without taking anything, and was quite stable and confident during the last years.

 

But after some years with a lot of travelling, changing relationships, moving and finishing my studies, I was quite stressed and exhausted - I realized I needed to rest and take more care about my health.

 

Just in the middle of this sensible moment, I heard about my sister's death - she commited suizide after a long story of mental problems and medication. I guess this moment, 2.5 years ago, was the beginning of my journey through what I now call the most difficult and challenging time of my life.

 

First, I was able to deal with my grief and all the follow-up bad situation with my difficult family, taking good care of myself and planning my future.

 

However, later, in summer 2014, after some months of sudden heavy pain in my hips and my legs and an adverse reaction to pain relievers and an antibiotic, I started suffering seizures and heavy shivering attacks which did not disappear but were getting worse.

 

I went to the ER several times, but nobody seemed to care nor have the slightest idea what was wrong with me, as all tests came back normal. I just knew, I had this seizures and cramping where I sometimes lost conciousness every 4-6 hours and was not able to walk anymore. Mentally, I was in a very good mood, not depressed, anxious or panicking. doctors wanted to send me to psychiatric treatment, but I didn't follow their advice -  for me it was clearly some body reaction and I was very afraid to be filled up with drugs.

 

Finally I started taking Lorazepam to be able to get through this time and to stop the seizures. It worked, but I still had unbearable pain and could hardly walk, and taking a benzodiazepine was the only way I could go on searching for a reason and a treatment.

 

Unfortunately, I got dependent within a few weeks, and was not able to stop it without unbearable symptoms. So I continued to take 1.5 mg every day.

 

2 month later, a psychiatrist introduced mirtazapine, to "ease the posttraumatic stress symptoms and to be able to go through the benzo-withdrawal".

 

By this time, I was in such a bad shape, I guess I would have taken almost anything that could possibly ease my pain and stress. In fact, it didn't help much with the withdrawal, but it almost immediately made me sleep - which was absolutely necessary for me. I didn't want to updose the lorazepam as I thought I was already in tolerance and was very scared about being dependent.

 

In autumn/winter 2014/15 I tapered 1.5 mg Lorazepam within 4 month on my own, just the information I read about withdrawal in the web kept me going. It was very difficult and I suffered strong symptoms, but I was so eager to be free of this stuff.

 

I am now benzo-free since Feb. 2015, and felt much better as soon as 2 weeks after the final dose (0.125 mg)

 

Mirtazapine helped me sleeping initially, but after the benzo-withdrawal I realized I suffered strong side effects like lethargy, dizzyness, agitation, emotional numbness and weight gain and I didn't want to be put on psychiatric drugs any longer, so short after I started my taper of mirtazapine.

 

I think I must have thought something like "this must be much easer than benzo-withdrawal, don't believe the crazy stories about AD-w/d"

Well - this turned out to be an even more difficult and longer process.

 

My dose was 30 mg, and I went reduced about 10-12% per month. At the moment I am taking 5.9 mg mirtazapine and I will continue the tapering in small steps.

 

Every small cut is followed by racing heart, anxiety, noise sensitivity, muscle cramps, pain, exhaustion, sleeping probs and more symptoms, and so I still have a way to go.

 

Most days I am housebound, feeling sick and in pain, just being able for a short walk - I was already in this condition before starting the tapering, but now I am much more positive and not doing worse than before on a higher dose. My mind is clearing up and I got part of my feelings back.

 

Being in withdrawal since 1.5 years now feels difficult, but I think I learned something very important from this process: How a stressed autonomous system can produce very bad symptoms, without any "underlying depression/psychiatric illness" (as I was told by many doctors - they seem to know nothing about it).

 

Fortunately, I have a very helpful therapist who always assures me that what I am going through is not depression, but was a strong body reaction to challenging life events, adverse drug reactions and now withdrawal.

 

I have realized that I have a weak point in my upper back bone and I tend to have very tight muscles, which was the initial reason for my pain, and I need to do very careful exercise and relaxation to improve it.

 

Finally, I think I understand what happened to me and my body, why I got sick and, even more important, I know the things I need - and the things I need to avoid. Withdrawal seems to delay and sometimes set back my recovery, but that's something I can accept most of the time.

 

Lina

[mammaP]

Hi LinLina, welcome to SA.  I am so sorry for the loss of your sister, it must have been a terrible time for you.  

Well done for tapering the benzo, they are very difficult to taper  as you know. 

 

I would hold the mirtazepine taper for a while now and let your body have a rest from tapering, then you could restart and do a very slow taper from the remaining small dose.  Many people feel better after holding for a while, it gives the brain and nervous system time to catch up.  From you signature it seems that the cuts have been a bit erratic and would lead to your feeling withdrawal. I am not criticising you, many of us were unaware that the way we tapered was making us feel ill, I tapered badly before I came here but thought I was doing it right. I couldn't understand why I felt so ill. Once I learned how to taper properly I took another 2 years to taper the last 5mg of effexor, a long time but got there in the end  

 

I will find some links for you to read that might help. 

 

http://survivingantidepressants.org/index.php?/topic/5301-tips-for-tapering-off-remeron-mirtazapine/

 

Many of us here find a good quality fish oil and magnesium help with withdrawal symptoms. 

http://survivingantidepressants.org/index.php?/topic/1300-magnesium-natures-calcium-channel-blocker/

 

http://survivingantidepressants.org/index.php?/topic/36-omega-3-fatty-acids-fish-oil/

 

It sounds like you had an awful time with the pain and adverse reactions to the pain drugs, was it tramadol that you took for pain? 

Just curious because I have had a terrible time with it and it made me ill, withdrawal is as bad as the other drugs! 

[LinLina]

Hi MammaP,

 

thanks for reading my story and for the warm welcome :-) Congrats for your successfull tapering of Effexor! Thats great to hear, you had so much patience from 5 mg on and finally made it.

 

Thank you for your advice about my tapering. I totally agree that I went a bit erratic from time to time, although usually I try not to cut more than 10 % from the last dose.

 

I must admit I was not able to find a rate that feels really good so far, although I am very well infomed. I have read so much about the benefits of long holds and very small cuts, I believe in it and I keep on advising others about it in our community I must admit , but I found it difficult for myself to do a very slow taper with real long holds.

 

The main reason is, I was feeling terrible on mirtazapine from the beginning on. Never felt like that before. It induced nightmares and depression and, at higher dosage, inner stress that made it impossible to rest. I just kept taking it for some months because I thought it helped with the benzo withdrawal - at least it made me sleep but in hindsight I realized it didn't help much but added to the w/d increased agitation and feelings of numbness, tiredness, dizzyness and depression.

 

I feel terrible on this drug, and this is the reason I am still impatient, although I am very much aware that generally, slowness is the key to success when it comes to tapering drugs.

 

If I hold longer than 2-(3-4) weeks, the withdrawal symptoms decline, but the initial drug-feeling of not being myself and lethargy increases again, which is hard to endure and I feel even worse.

 

I will see, hopefully the sideeffects start to get even less the lower I get, and I can be more patient, for my own sake. I am planning to start a longer hold during the summer, for hopefully not suffering so much from the heat.

 

Overall, I feel better now on a lower dose, even while suffering withdrawal after the cuts, but at the same time the low dose makes me very tired.

 

Actually, I am trying to do smaller cuts with shorter holds, to balance it better. So, still, I am trying to find the "perfect" way between withdrawal and side-effects - which is impossible I guess, as symptom patterns are changing during the process, but watching carefully my body while not being anxious is the way I hopefully will get through this.

 

I take fish oil and magnesiumcitrate, take epsom salt bath and eat a lot of almonds and carrots - I am craving them, I guess my body needs it.

 

I never took tramadol for my pain, so sorry to hear you had such trouble with it and need to taper it as well. I just took diclofenac and ibuprofen a couple of times, but I had a bad reaction on it (increased muscle pain, shivering, fainting) and doctors said I might suffer a mysterious infection, gave me antibiotics, then I started to have heavy cramps and my legs and arms were totally numb for some weeks. I had to learn to walk again after that. I was scared of drugs after that experience, and I was very afraid to take other pain medication.

[mammaP]

It is an awful situation to be in,  whatever you do makes you feel ill.  It was the same for me  when I was tapering effexor. I felt mild withdrawal after a cut, then felt better, then started to feel the side effects again, which told me that it was time to cut again. I now know that I should have held a bit longer and made smaller cuts.  I  wish I had found this forum before starting to taper and known then what I know now!  Our brain needs stability, and I feel the slow taper with tiny cuts is the best way to go.  When the cuts are very small it's like sneaking the drug away so there is very little difference. I'm doing this now with tramadol, I feel withdrawal at 10%, so tried 5% and now cut just 2.5%. It's taken around 2 months to work that out by listening to my body. I advise people here to go slow and yet when I started this taper I was tempted to cut by 25% because I didn't want to be tapering forever, I think we all feel that way even when we KNOW the right way to go. It's like going somewhere and there is a rocky road that's a short cut. It's hard going and treacherous but it will get us there in half the time. We see people take that road all the time and wait for them to hit the craters, yet I was still tempted to go that route! I'm so glad that I didn't. Not saying you are doing that, just rambling on a bit. 

 

The side effects will get better as the dose lowers, but can be replaced by withdrawal which can be worse than the side effects, it's a fine balancing act.

We have a topic on micro tapering, I'll post up the link for you if you would like to read it.

 

http://survivingantidepressants.org/index.php?/topic/2878-micro-taper-instead-of-10-or-5-decreases/

[LinLina]

Thank you very much, mammaP. I was thinking a lot about your words during the last days and I think I should really try to adjust my strategy again. I think after the next hold I will try a 5 % reduction every 2-3 weeks.

 

I was doing the benzo-taper very stubborn, always cutting the same amount (also, my doctor put a lot of pressure on me) It was getting harder and harder, and it felt almost impossible to get through, but I made it, and I felt a lot better (sometimes even better than before taking the benzo) within weeks after the last dose, so it was very tempting to try the same.

 

I already learned that for me, tapering mirtazapine is very different, but still from time to time there are thoughts crossing my mind like "there has to be a faster way! Don't be oversensitive, get rid of this stuff!"

 

 

 

It's like going somewhere and there is a rocky road that's a short cut. It's hard going and treacherous but it will get us there in half the time. We see people take that road all the time and wait for them to hit the craters, yet I was still tempted to go that route!

 

 

Yes, it's always the same - we try to go too fast, even though we should know better. There are few people around who are patient enough to do a real slow taper before our body says "stop it, please".

 

Spring is arriving very fast, with all the green and birds singing and people getting more active and happy - a difficult time to taper. I prefer winter, when I can do all the nice and comfortable stuff inside like watching movies, knitting, sleeping :-)

 

Still, after one year of tapering, I have a hard time to accept that I have to take mirtazapine for years, after being on it for just 5 months. However, since I've been reading and writing a lot in my online-community I've seen that happening to many people :-(

 

Do you have a topic about when to get off / final dose?

[mammaP]

Some people manage to taper faster when they've been on a drug for a short time but others find it very hard. It becomes more difficult when there have been other drugs. The most important thing is consistency and listen to your body, if you feel withdrawal the cuts are too big or too close together. 

 

Here is the topic on when to end the taper. I carried on reducing effexor until I couldn't go any lower!  

 

http://survivingantidepressants.org/index.php?/topic/11051-when-to-end-the-taper-and-jump-to-zero/

 

The 3 KIS  Keep it simple Keep it slow Keep it stable. 

 

http://survivingantidepressants.org/index.php?/topic/6632-the-rule-of-3kis-keep-it-simple-keep-it-slow-keep-it-stable/

Edited June 7, 2016 by JanCarol
corrected old link

[JanCarol]

Hey Linlina - welcome to SA!  I have sent German speakers to your other forum, so it's nice to see someone come from there, too.  Like sister-sites!

 

I am so sorry for your loss, and the horrific things you have been through.

 

I'm not a doctor or diagnostician, but we do hear that certain gene types are very poor metabolizers of these drugs.  That might explain the trouble your sister had, as well.

 

The difficulty is - you have symptoms going on - AND - you have symptoms coming off.  It's a hard road either way you walk it.

 

Congratulations on your successful benzo taper, and it sounds like you have been very reasonable in your tapers so far - thank you! 

 

However, you are having symptoms, and our harm reduction approach here is to minimize symptoms so that you can get on with your life.  I agree firmly with Mamma's idea to hold for awhile, and let your system settle down.  

 

And MammaP has already covered the microtapering, too. http://survivingantidepressants.org/index.php?/topic/2878-micro-taper-instead-of-10-or-5-decreases/  

 

Once your system has settled down, consider microtapering for the remainder of your dose.  I'm a big fan of Rhis's Start Small Listen to Body Taper Plan - where you throw away your calendar, and track your symptoms, and just take it as s-l-o-w-l-y as you can, letting your body and your symptoms guide the rest of your taper.

 

It feels like you are more than halfway through the dark forest - stay the path, and be kind to yourself.  It gets better, and you can get through this!

[LinLina]

Hi JanCarol,

 

thank you for your kind and encouraging words.

 

yes I also feel we are like sister-sites, we sometimes send english-speaking people to your site :-) We translated some of the great information and advice from alto and some other valuable stuff from your site into german and refer to it a lot.

 

Concerning my sister, maybe you're right about the slow metabolizer. Unfortunately I don't know what trouble exactly she was in concerning the meds. Before her death, I never took any of these drugs, and I just tried to stay away from it, so I was very uninformed and I could not imagine the drugs being sometimes much worse than the illness.

 

Shortly after she died (age 25) I was told that she was diagnosed "schizophrenic" 3 months before her death. I knew she's already been addicted to benzos in the age of 16 (!) because of sleeping problems and she's been several times in psychiatric wards because of "borderline disorder". She must have been taking many meds, at least for some time, and changing them many times, quitting c/t, or fast taper, that's the only thing I am quite sure about.

 

If I wouldn't have gotten into drug dependence and withdrawal myself, I'd never had too much doubt about her fate, but now I sometimes feel very sorry that I was not able to understand earlier what she was going through, besides her initial problems.

 

It is much easier to write about that in english than in my mother language. I guess it's still very sad talking about it, and foreign words don't trigger my emotions as much as I have to process them kind of before grasping the meaning.

 

Maybe we have this drug sensitivity in familiy, as my mum is also not doing too well with taking AD's and stuff (she's taking sertraline and lorazepam), but still she's on them since many years now. She mentioned that she wants to start a taper maybe next year or so, and I hope I can convince her to do it very slowly and very carefully.

 

 

I have been thinking a lot about my taper during the last weeks, and I think my mind is about to change. I knew about the importance of slow tapers, and I tried to follow it, but always had this very prominent part of my mind saying "I want to get rid of it asap".

 

Thanks to mammaP and your advice, and because of spring time arriving, I have started to feel more compassion for my suffering self, my aching body, my vibrating nerves, my vulnerable brain. this feeling has grown stronger, and the obsession to get off the drug has diminished a bit.

 

I will now try to nourish and appreciate this new feeling, this new hope, that I might be able to stop suffering so much even before I have finished my taper. I don't actually know, if some of the symptoms I identified as been there before my taper, might disappear or get much better if I hold and then do a real slow taper, but I start to be curious about it.

 

To be honest, the words "to be able to go on with my life" scare me as much as they make me happy. I guess it's just general fear of changes, be they good or bad. Usually, I feel like the happiest person in the world, when feeling better after recovering from illness and grief and have to be very careful to avoid doing to much at once :-)

 

I like the "throw the calendar away" idea, and at the same time it makes me feel insecure, not having any kind of "plan".  At some point I have scheduled my reduction with my period and this seemed to work well, although I was still reducing a bit too much per cut to feel really good.

 

It's very true that bodys were there before calendars and it doesn't work forcing them into a fixed schedule while healing. However, we have kind of our "inner calendars" like circadian clock and also monthly changing hormones, so it might be possible to adjust to these inner natural cycles?

 

It feels like you are more than halfway through the dark forest - stay the path, and be kind to yourself.  It gets better, and you can get through this!

 

 

Thank you for those encouraging words. I also think I am already halfway through the forest, and while walking I learned how to survive within the forest, which is very important as well.

 

Hope I'll recognise the open landscape again when finally reaching it!

 

Lina

 

P.S. could you check for the link in MammaP's last post, the one about when to end the taper? It doesn't seem to work.

[JanCarol]

Hey LinLina, just checking in - 

 

You wrote:

To be honest, the words "to be able to go on with my life" scare me as much as they make me happy. I guess it's just general fear of changes, be they good or bad. Usually, I feel like the happiest person in the world, when feeling better after recovering from illness and grief and have to be very careful to avoid doing to much at once :-)

 

WOW what a powerful insight!

 

You have beautifully described the fine line between sheer terror of "being just myself" and the absolute joy of "being just myself," as well as the balance we walk between "wanting a plan," and "listening to intuition."

 

I have looked at Mamma's link - I'm glad I did, because I've been using the same one (sometimes threads get moved, but our "toolkits" still contain old threads), so I have fixed it now:  http://survivingantidepressants.org/index.php?/topic/11051-when-to-end-the-taper-and-jump-to-zero/

 

So your signature says you were on 5.9 mg mirtazapine in March, have you tapered, or held?  How are you going?

 

I hope you see the sun today!

[goodrich]

Hi Lina

Sorry for trying to approach you via SD but ADFD has been down for a few days. They have apparently problems with the domain provider because their website shows up when entering ADFD. Do you have more details? Hope they will have the issue fixed soon.

Cheers

gelblack

[LinLina]

Hey,

 

I 've not been checking in here for - uhh way too long. I'd lost my password for some time and it was just too much during withdrawal to take the effort on getting a new one, strange as this sounds :-O With the cognitive symptoms I can easily forget things and postpone stuff for days, weeks, month and then remember again.

 

gelblack, I did not get your message last year, sorry. No worries about contacting me here :-)  ADFD is online, the issue has resolved some time later, fortunately. you know about that, but I want to put the information here in case somebody still reads your post. Congrats again for your successful taper. Maybe you want to share it here on this page as well?

 

I'm still in the process, down to 0.25 mg Mirtazapine. Hopefully I will be able to jump this year. I am doing ok, although it isn't easy, but overall feeling better than last year.

 

I will update my signature later, I have to go for a walk with my dog and catch a bit of sun :-)

 

Lina

 

 

 

 

[Starboy17]

Hi LinLina,

 

Sorry but i'll keep my post brief, like yourself i'm tapering mirtazapine and this has got to be the most difficult thing i've ever done in all my life.  The pain and suffering is beyond belief and if i hadn't experienced it myself,  i would have never believed that a drug that has such debilitating withdrawals would be legal world wide.  I wish i was at the lower end where you are, but i'm stuck on 2.5mg and its just **** house....

[LinLina]

Hi Starboy, I'm sorry to hear you are suffering so much. I can totally relate. I've never experienced something like mirtazapine withdrawal in my life, and I've been through pretty rough times before.

 

If we take it really slow and listen to our body,  we're gonna make it. One year before, in the beginning of 2017, I think  I've been at your current dose, and I've started in 2015 - so you see we've been tapering at similar speed :-) I think it is very important to stabilize when withdrawal symptoms hit you too hard.

 

I hope you can recover a bit within the next weeks. I wish you a lot of strength and patience.

 

Lina

 

 

[slowphie]

Just read your story. You were on quite the journey, I hope you’re doing well these days. ☺️