Atao: Mirtazapine CT and withdrawal

[Atao]

Is it possible that I have permanent brain damage from an anti-depressant.  I came of Zispin 12 years ago cold turkey and am still suffering withdraw symptoms that come and go. The symptoms are so severe at this moment that I think I'm losing my mind.  I am keeping two words in mind 'Courage & Dignity".  I'm going through this so long now that I don't talk about it any more to the people in my life.  However, its getting harder to deal with because I'm getting older (60) and my physical health is poor.  Two years ago I was told I had terminal cancer I was scared but also relived to know I was getting free of this withdrawal problem.  The doctor then decided to operate, she told me I had less than a twenty percent chance of surviving.  Well, I got free of cancer, I had my lung removed (and my quality of life) and everybody said I was a miracle.  I don't feel like a miracle, I feel like a pathetic mess.  Can anyone give me a little hope please.

[SkyBlue]

Atao, my heart goes out to you. You have really been through a lot, to say the least. 

 

You may want to read AltoStrata's story. She has healed from iatrogenic damage from Paxil. It did take quite a while. 

Other stories that come to mind are Happy2Heal--she came off psych drugs after many decades. 

 

There are also Success Stories on this site, as well as others sharing what works for them. I admire your mantra, "Courage and Dignity."

 

If you are up to it, feel free to share more of your story here; this can be your Introductions Thread to get support during your journey.

People might be able to offer self-care strategies that might work for you, as well as general encouragement.

 

There is hope for healing. Please hang in there. 

 

[Atao]

Hi SkyBlue

 

Thank you for your reply.  This is the first time I have posted anything on a website and it is also the first time anyone has truly believed me.  I read AltoStrata's story and you're right it is very encouraging.  

 

In 1998 I too was put on Zispin, as it's called in Ireland, for no good reason.  It caused me terrible nightmares, keep me asleep for ten hours every night and generally made me feel bad.  It made no difference to my mental state, which was fine anyway.  While I was on it, it interacted very badly with other medications and certain food, so I could not take certain things into my system.  I tried to come off it by reducing several times and always failed.  When I diagnosed with an underachieve thyroid I could not take the necessary medication to remedy it while on Zispin.  So in 2006 after eight years on Zispin I decided to go cold turkey.  It was pure hell but I thought it would only be for a few weeks.  The very severe withdrawal lasted two years, then a new, not quite as bad lasted another four years.  At the end of these six years I really thought it was over.  Then in 2012 the worst of it came - tremor, numbness, pins & needles, burning sensation with anxiety and panic attacks.  This is the way it has been for six years now coming and going.  It has been so terrible for the last two months, I can't eat, sleep, go out or be with people.  I am in total despair.

 

Medically: I seen a lot of all sorts doctors and had a lot of tests over the years.  And as a result I have been very abused by them.  I have not spoken to a doctor about this problem in four years and never intend to again.  Doctors are my enemy, they are dangerous to my mental health.  Family and friends don't understand and treat me like I have depression, so I don't want them around either.  Given my physical health I don't think I am going to, or indeed want to, get through this patch as I'll just be waiting for the next one.

 

I'd also like to add that in 2012 my doctor rang me and told me he had a pill that could cure my symptoms.  He'd bee to a conference and they had this wonderful new drug called Lyrica and that it was made for people like me.  I asked him was it addictive and he said no. I asked him was he sure and he said 100%.  So I took it, Yes fooled again.  It didn't help at all and I was addicted within a few weeks, shame on me for been so stupid.  I am now six years on Lyrica, it causes me no problems, nor does it help.  Basically it does nothing expect make Big Pharma rich.  However, I am not prepared to come off it and add to my withdrawal.  

 

I contacted your website and asked for my initial post not to be posted because I felt my cancer story made me identifiable.  On reflection, what does it matter, anyone on this site is on it for the same reason as me.  

 

I would appreciate any advice and I will over time explore the site.  It had been somewhat difficult for me to write this email because I am very disoriented at the moment.

 

Thank you so much for your help.

Atoc

[LexAnger]

My god, I'm so sorry you were harmed for so long! I'm in total agreement that doctors nowadays are the most dangerous!

 

did you take lyrics before or after the new terror started in 2012?

 

if after, what do you think triggered the new symptoms that ramped up? you said lyrica is not doing anything to you. Have you been having those symptoms all these 6 years?

 

hope you are having some relief soon!

lex

[Atao]

Hi LexAnger 

Zispin/ Mirtazpine/ Remeron

Thank you for your reply.  The symptoms started before I took the Lyrica.  Its the Zispin that is causing my problems.  The symptoms appeared to be dying down after six years but they then flared up again.  So my doctor thought that the Lyrcia would help ease these symptoms.  But the Lyrcia did nothing at all for me, they had no effect good or bad.  I am just now addicted to another pill.  Although he was trying to help he insisted they were not addictive.  What bothers me is how could he be so emphatic about something he knew nothing about.  To me doctors are just outlets for Big Pharma.  They believe everything they tell them or they don't care, they just go with the leaflet.  They are like a newsagent, they don't check if the story in the paper is correct. The newsagent is not responsible for whats printed, but the person with the MD is.  I think the GP's should be held responsible for the dangerous drugs they push on the unsuspecting masses.  

 

Atao

[LexAnger]

It's so heartbreaking to hear your horror experience with doctors!

its a relief to know lyrica didn't cause more problems! 

 

Do you see any improvement in the past 6 years? How did you survive all these years? 

 

the whole medical system is set up for wrong doing and irresponsible behaviors from each. Pharmaceutical play numbers and FDA can be part of the deal to have a drug approved, then doctors are not responsible to know drugs from any other source or training except for the salesperson or leaflet. Pharmacist is the one knowing the drug but has no authorities to prescribe. See the loop with no one holding responsibilities for proper priscribing drug? 

 

 

[Atao]

Hi LexAnger

 

The first six years were bad, but the second six years were much worse.  I'm not as bad as I was six years ago, but I'm not much better.  I have been unable to function for the last two months, its about two years since I've had it this bad. It comes in windows and waves as it has been described on the site.  Its never less than a 3 out of 10 and fluctuates between that and a 9 out of 10.  I don't want to scare anybody by talking about 12 yrs of withdrawal but I have to because I need help and support too.  I don't want to get too angry because that will only cause me pain.  I recently read the book The Sedated Society and it suggested that these drugs could cause permanent brain damage and that terrifies me.  The only good thing I feel is that I believe this dam is about to burst soon.  These people will be exposed for poisoning people.  But I guarantee the GPs will get off scot free.  I'm going to bed now and I hope I sleep and get a few hours relief.  I don't know what time zone you're in, its 1am here.  Thank you so much for your reply and kind words.  I hope you will keep in touch.

[Atao]

Hi. Could somebody tell me how to add Mirtazpine to my user name.  I feel if I put this in I might get more replies.

 

[manymoretodays]

Hi Atao and welcome,

I can add Mirtazapine to your user name.   Zispin is Ireland,s mirtazapine.   And I'll also add a tag......that goes above your introduction here.

It sounds like you've been through the wringer, and just would like help and support for protracted withdrawal/discontinuation now?

 

Could you do a signature for us?  Please put your withdrawal history in your signature

This is what you see below members posts.  This gives us an idea of your medication history at a glance.  Please add your Lyrica, even though you are not tapering.

 

You'll get more replies soon.  I'll also include a link to our symptoms and self care section

There are a lot of topics over there that should help with coping, and more knowledge around your situation now.  Self knowledge can be empowering.

 

This is your main page......your introduction/journal......introduction to the community, a place to ask questions, as well as post updates specific to your situation.  Feel free to explore around the site and get familiar, and visit and support other members as well.

 

Love, peace, healing, and growth,

mmt

 

 

Edited August 13, 2018 by manymoretodays

[Atao]

Hi manymoretodays.

 

Thanks for your help, I've added a signature as suggested. I'm feeling pretty desperate at the moment. Don't seem to have the physical health to deal with this level of withdrawal. Just struggling and trying to keep my dignity. I've had too much abuse in the past, not opening that door again.  I will explore the link your suggested. 

Thanks again

[ResALD]

Im so very sorry for what you’ve been through. Just terrible.

 

i hope it’s okay to ask, but what mg mirtazapine were you on?

[Atao]

Hi ResALD

 

I was on 15mg. Not a lot really.  Hope my story is not too scary.  But I think I’m just unlucky. I’m sure most people will recover quicker. 

[ResALD]

For how long were you on 15mg before you CT?

 

And what are you symptoms over the last 12 years?

Edited August 14, 2018 by Altostrata
removed mod note

[ResALD]

Also aside from the Lyrica, did or do you take anything else (herbs, pharms, OTC, Supps)?

[ResALD]

Couple more questions please.

 

Why did you take mirtazapine?

 

Did mirtazapine help you for reasons that you took it, or did it always harm you?

 

And if it did harm you, what were the symptoms?

[Atao]

He ResALD 

 

Thanks for your message, only seeing it now

I took 15mg mirtazapine for 8 yrs, (1998-2006) it was given to me for no clear reason, I think antidepressants were just fashionable.

I got no benefits from mirtazapine.  The symptoms were unpleasant, nightmares, sleeping all the time and most serious of all - I couldn't take other meds while I was on it.  I was diagnosed with an underactive thyroid in 2004, which required me to take Eltroxin.  I couldn't get the medication into my system, the mirtazapine wouldn't let it in.  Every time I tried to take the thyroid meds I went into withdrawal.  I tried to stop mirtazapine in the first few weeks of taken it but I was already addicted.  I tried for eight years to get of it slowly with no success.  In 2006 my thyroid problem was so bad I just had to stop the mirtazapine so I felt I had no other choice put to go cold turkey.   The only medication I take today is Lyrica and Eltroxin (thyroid med).  I also take inhalers for lung problems.

Withdrawal symptoms over the last 12yrs

2006 initially panic attacks, anxiety, sleeplessness, crying, dizziness, confusion, stomach pains, walking up and down the floor.

3 months later for 5 yrs: Numbness all over, tremor, anxiety, disorientation and headaches. all symptoms consistent, no windows or waves

Then I got a break, things started to get better for a few months.

2012 It all started up again, this time it was worse but there was windows and waves (more waves than windows).  the symptoms like before included numbness all over, tremor, anxiety, disorientation and headaches and an extra symptom burning.  It is this burning that is the worst and hardest to manage and very ofter makes me wish I was dead.

 

I hope I've answered your questions, feel free to ask more its lovely to have contact with someone, but I hope I'm not frighting you.

[ResALD]

Thank you for the info. It’s very helpful. I’m so sorry for everything you’ve been through. Just so wrong.

 

Can you tell me what kind of taper schedule you tried when you say you tried to slowly come off mirtazapine in the past?

[Atao]

I tried reducing by 1/4. Didn’t work

then 1/8 then 1/16. Then shaving a tiny bit off of it. Each time I failed.  And each time I ended up back on the 15 mg. 

[ResALD]

Thank you for your thoughtful & swift answers.

 

How far down from 15mg did you get when you tried tapering by those different percentage drops (25%, 12.5%, 6.25%) before reinstating or up-dosing?

 

Also, have you ever had DNA Pharmacogenetics testing to know where you land as far as mirtazapine compatability (metabolization)?

[ResALD]

And did reinstating ever but you anything? Meaning did it alleviate your w/d symptoms?

[Atao]

I really don’t remember how far I got it was so long ago.  But I do know not very far. I always bounced back as soon as I reinstated.  I would reinstate with 30mg for one day then back to 15mg after that. No I never did any testing.  It’s 2.45am here now so going to bed. But will read up on this testing in the morning. Might need to ask you more about it then. 

[ResALD]

Thank you, I hope you sleep well. Just know no matter what, there is always hope. Always.

[Atao]

Thanks ResAld

 

I did sleep well, but I don't feel too good this morning.  May I ask you how you are.  Are you struggling with Mirtazpine?

[Atao]

Hi I'm wondering if anybody knows anything about lamotrigine and how a small dose could with protracted withdrawal syndrome.

[manymoretodays]

Hi Atao,

I'm going to give you 2 links to carefully read through. 

Read this one first:  One theory of antidepressant withdrawal syndrome

And then this one:  Lamictal(lamotrigine) to calm post discontinuation withdrawal symptoms

There's one more post on the subject that is linked in red in the above, to read before the 2nd link as well.

 

It helps when the alerting system is thrown off due to discontination- protracted withdrawal.  How is your sleep Atao?

 

It can be very tricky.    The starting dose is very small too, < 2mg.  

The founder of this site got relief from using this.  So if, once you've read through a bit........if it's something that you think you might benefit from........I'll have Altostrata stop in.  She may notice the post and stop in before too....... 

 

I don't have much experience with it myself......yet, was considering it not too long ago.  I seem to have crossed over into calmness(for the most part), and sleep is not a problem for me anymore........has not been for a long time.

 

You can use any doctor to get a prescription for it.......but as the starting dose is really low......you'd have to be able to explain to Dr. what you need..........we can help you with that.

 

Love, peace, healing, and growth,

mmt

 

 

 

Edited August 15, 2018 by manymoretodays

[Atao]

Hi manymoretodays

 

Thank you so much for your reply.  I have read what you recommended.  I already read 'One Theory' In Atostrata's story thats when I first heard of Lamictal.  I'm scared of trying something new (with good reason) but I'm also desperate.  I did message Atostrata but I sure she must be very busy.  

 

I thought I was improving then about two months ago it came back with a bang.  I have been totally in capacitated since.  I can take the numbness, the dizziness and terrible sensations in head are very troubling, but the worse part is the burning sensation that brings anxiety and panic attacks.  

 

I lost a few nights sleep a week or so ago, other than I sleep like a baby - always did except for the acute withdrawal period 12yrs ago.  I know from browsing the site I am very lucky that I can sleep, still it does not negate the horror of my situation.  

 

I take on board the advice to start low and would follow it.  I also take full responsibility for my actions after careful consideration of that advice.  I have zero confidence in the medical profession, but if this drug is available in Ireland my GP will give it to me and he would let me tell him what dose I want start on.  

 

I know he feels bad about swearing to me at the time I took Lyrica that is was not addictive.  I like many people on this site am sensitive to medications, alternative remedies, certain foods and washing power.  A sensitivity I did not have before I took Mirtazpine/Zispin.  

 

As I already said I'm taking Lyrica 100mg 2daily, it does not seem to help or harm me in anyway that I'm aware of, but I can't come off it because it is highly addictive.  I will leave this as it is because I cannot face anymore withdrawal.  Maybe you could comment on my taking Lyrica, do you think this is a wise decision.  At the moment - my physical health is very poor and on top of this I'm not eating very well or excising and the weight loss is showing.  Two things I have been strongly advised to do by the better half of the medical profession.  I live alone and have no family support I have lots of friends but I lost the ones I confided in, so I'm keeping my distance from the others.  I don't say this with self-pity, I have done a lot of study of human nature and this reaction is to be expected, besides I make friends easily.  However, at this stage I don't know if I want to live or die. Please tell me if you think its ok to go with my GP if I do decide to take Lamictal. 

Edited August 16, 2018 by manymoretodays
spacing

[manymoretodays]

Hi Atao,

 

Did anything happen 2 months ago when you got worse again?

We don't have any magic bullets or immediate relief type strategies, yet, I think we can get you on a path to healing.  Lot's of patience required of course.

 

It may be that the Lyrica is affecting you.  I know you've stated you don't want to come off the Lyrica, but it's possible that the Lyrica might be causing your difficulties, or at least responsible for some of them.

We've had members taper off Lyrica(pregablin).  It's the same deal..........10% or less from the previous dosage.

Tips for tapering off Lyrica

I'm not pressuring you to get off of it right now........ let's just have you read up on it a bit.  Yours might be a case where your drug is your problem......or at least part of it.

You can also check it at drugs.com

Just plug in Lyrica(pregablin) there.  I just glanced at it a bit.  Look at some of the reported side effects and see if any apply.

The link is also in the first post in the Tips for tapering post.

 

You have to eat Atao.  Can you just do some real simple stuff or nutrient type drinks or shakes of some kind?  And poke your head outside. 

Try and realize that you are not going to feel this horrible forever.  Anyone you can call or have come by?  That might help.  Honest, I was kind of the same way when I got here......on some days.

I think you would be okay going with your GP, If Lamictal seems like the best option for you.

 

Yes, Altostrata is very busy.........Let's gather some information, and then I'll ask her to take a look see, and advise.  I'm going to ask you to try real hard to do some daily symptom logs before that.   

You could do them on paper for a day or two and then post here in your introduction. 

Daily symptom logs

It's really pretty simple.  Time.  Drug. Dosage.  Description of symptoms.  Include any supplements that you might take.

 

I just want to gather a little more information right now. 

 

Also please wander over to symptoms and self care  Look at some of the pinned topics at the top.  The non-drug techniques for coping there has a whole indexed section in the first post that you can choose from.  Eat, eat and try to watch some videos, or do a pleasant guided meditation.

 

 

Hugs.  Love, peace, healing, and growth,

mmt

Edited August 16, 2018 by manymoretodays

[Atao]

Thanks for your reply manymoretodays

 

For 6 years the symptoms have been going from 3-9 out of 10.  For the last two of these years it has been 3-7 out of 10 with the 7s lasting for a shorter time.  Then for no reason I can think of it flared up again to a 9 two months ago.  This happened six years ago, Just when the symptoms seemed to be going away they came back twice as bad.  This was pre Lyrica, in fact this was why I took Lyrica.  Over the last 12 years I have had permanent numbness and pins & needles in my feet and legs below the knee.  When a bad time is coming these symptoms get worse and rise to my upper legs then all over my body (Its like a snow globe).  I suppose I should have explained that the symptoms are there all the time, it is the severity that has changed.  This is why I am convinced that the Lyrica is not the prblem.  That said, I will read the information you recommended in the morning  as I'm off to bed now its 2am here.  I will read it with an open mind and get back to you, if thats ok.  I truly appreciate your time and kindness, I didn't expect the people on the site to be so caring.  You have given me hope and I look forward to learning more about my condition and making every effort towards improvement.  Again thank you

[manymoretodays]

Hi Atao,

Include the Eltroxin(in your signature below posts, as well as in your logs) and inhalers(if using now).

When was the last time you had your thyroid levels checked?

[Atao]

Hi manymoretodays

 

Thank you so much for your advice.  I looked up Lyrica as you suggested and I can't identify it as causing todays problems.  Some of the adverse effects that I read about, where there before I took it.  I did make a few attempts over the years to come off it but the withdrawal was too severe.  I am on 200mg a day, I reduced by 25mg and all hell broke loose so I went back to full 200mg.  However, after reading how to come off it I am willing to give it a go, but I don't know if this is the right time.  I didn't know you could put it in water, so if I am to taper off I would start with 5mg - can't take any more symptoms.  I know this would take a long time, but I am very patient and I could stick with it.  I would love not to be on it, but if the withdrawal is like the Zispin I am not able to go through that again.  No matter how little I scraped off the Zispin, the withdrawal was unbearable.  Thats why I went cold turkey I thought I might as well have all the withdrawal at once, but I can't go through that again.  I have bloods checked regularly thyroid seems to be in check.  What do you think.  Very grateful for your help.

[Atao]

Hi.  Could I open a Lyrica 25mg, discard 5mg and put 20mg back in the capsule and close it up again.  Would this be a good way to taper off.

[manymoretodays]

A 10% or less reduction of your present dose or less would be best. 

Why taper by 10%

this applies to Lyrica  too.

 

So.....that might work,  to get started, as it would only be a 2.5% 5% reduction from your current dosage of 200 mg, if you did that with both 100 mg doses.  You'd be down a total of 2.5 5% from your total daily dose of 200 mg.  Good slow/cautious reduction.

 

Consistency of measurement is really important though.  That you measure the same amount out, over time.  That the measurement method is consistent.  So you might consider working with a scale or liquefying part of each dose. 

Using a digital scale to measure dosages.

How to make a liquid from tablets or capsules.

 

If you go to the top right of the screen, you can type in Lyrica and do a search for other members who have taken it and tapered.   I know we've had some.  Sounds like you are anxious to get going with something/anything Atao.   I'll try and help some more when I get a chance.

 

L, P, H, and R,

mmt

......and thank you for the signature update including more of your current medications

Edited August 17, 2018 by manymoretodays
math error, additional link

[manymoretodays]

I just edited Atao.  Math error.  Corrected in red.

[Atao]

Thanks manymoretodays

 

I did read up a lot on tapering of lyrica.  My pharmacist said if I put it in water and swallow it, it could cause stomach problems, so I just thought ditching the power might be easier.  Anyway I have more faith in fellow suffers than doctors or pharmacists, so I'll go with the liquid taper.  Also I will purchase a scale on Amazon.  The reason for the slow taper is to find out if is possible for me to make any reduction, because it wasn't with the Zispin.  I'm having a really bad day today with symptoms, feeling a lost and frightened.   I know you're busy, but when you get a chance let me know what you think of me tapering of Lyrica and going on Lamictal.

 

Thanks again

[Altostrata]

Hello, Atao.

 

Your nervous system may be extra hyper-sensitive because of your history of cancer treatment and surgery.

 

You have found the Lyrica has absolutely no effect? Please wait on tapering it until we can unravel potential drug interactions.

 

What times of day do you take your drugs, and their dosages? Please keep daily notes on paper about your symptoms, when you take your drugs, and their dosages. Use a simple list format with time of day on the left and notation (symptom, drug and dosage) on the right.

 

Please put ALL your drugs in the Drug Interactions Checker https://www.drugs.com/drug_interactions.php
and copy and paste the results or a link to them in this topic.

[Atao]

Altostrata Thank you for your reply

 

These are my meds and they show no known interaction, however the drug checker would not recognise Ultibro, an inhaler I take every morning for COPD.  The other inhalers I don't take very often.

Eltroxin

Treatment for Underactive Thyroid75 mcg (0.075 mg) oral capsule one time

Lyrica

100 mg oral capsule two times per day

Ventolin

Treatment for COPD, Acuteinhalation aerosol as required

Combivent

 

Treatment for COPD, Maintenance2.5 mg-0.5 mg/3 mL inhalation solution as required

I have COPD (Chronic Obstruction of the Pulmonary Disease) for twenty years now and have never had any problems with inhalers.

Just to say about the cancer, I had major, major surgery two years ago.  I was cut from under my arm into the centre of my chest.  I spent three days in ICU under heavy sedation.  When I retuned to my room I became aware of the amount of pain medication I was on and promptly dumped it into the toilet.  Such is my fear of medication that I went through two months of serious pain rather than risk addition.  Also the cancer had spread to my heart and windpipe.  A very gifted surgeon removed my lung and scraped the cancer of other vital organs, and no other treatment was necessary.  I did not have Chemo or radiation.  However, I do have a lot of breathing difficulties.  I will hold off on tapering off Lyrica and will make the list of symptoms you suggested

Again many thanks