ManxKnob: hello world

[ManxKnob]

A ManxKnob is a popular boiled sweet native to my country a little like Knob Creek is a popular Bourbon.

My history is in my signature and like a lot of you beautiful people have been abused and misinformed by the Health Service.

I have been over prescribed AD and when it all went wrong nobody was there to pick up the pieces other than prescribing more AD and my health practitioner retrospectively altering my medical records to indicate congenital depression and historical regular medication reviews to protect themselves.

I am lucky to be alive and am currently trying to recover from Mirtazipine which was over prescribed for insomnia.

4 years after CT am still trying to piece together my life.

Edited June 21, 2021 by arbor

[arbor]

Welcome to the forum @ManxKnob, I'm so very sorry to hear you have been struggling with the effects of these medications.  I can certainly relate to what you are describing.

We are a non-profit site run by volunteer Administrators and Moderators who have been through or still are going through withdrawal.   

Thank you for setting up your drug signature.  I gather that the CT from Mirtazipine is still causing many current symptoms typical of withdrawal from psychiatric drugs.  Some symptoms return to normal fairly quickly while others take longer.  But what you're experiencing isn't a permanent condition though it can take a very long time to heal.  Time is our greatest healer.

 

These sites explain the healing process really well.

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

.

I also gather that you are currently tapering off Duloxetine and that the tapering has become problematic.  If you could describe in greater detail the problems you are having with the taper, then we can address those issues more specifically.  Bes sure to include the dosages and time tables of your taper.  It may be that you are tapering too quickly.  Its important to taper slowly as the dose gets lower.  What we recommend is a taper that's based on a percentage of your current dose not of your original dose. Here is why: 

 

Why taper? Paper demonstrates importance of gradual change in plasma concentration

 

Why taper by 10% of my dosage?  (The general philosophy of gradual tapering)

 

Please read this site as well:

Tips for tapering off duloxetine (Cymbalta) - 

 

 

Here is the link to our symptoms and self care section, you may find some useful ideas to help manage symptoms as you recover. 

 

This is your Introduction site where you can ask questions and connect with other members.  There is a wealth of information and experience on this site, so I invite you to browse and read as much as you can.  We can address more issues in particular as we become more familiar with the specific problems you want to address.

 

I'm glad you've found us, and look forward to hearing more from you,

Arbor

 

PS Thanks for the definition of your name!

 

Edited June 21, 2021 by arbor

[ManxKnob]

Thank you for your helpful and reassuring response.

I was prescribed Duloxetine by my GP as a "last-ditch" attempt to find some medication that would control the headaches (which I have only had since Mirtazipine WD)

As I want to get clean from all Pharma I have started to taper gradually following guidelines from forums such as these.  If I listened to my GP again I would be back in ICU following my last train crash.

I started to reduce about 8 months ago very gradually.  The pharmacy fulfils my repeat prescription and issue what ever brand is in stock.  The brand can change from month to month and can be caplets in a shell or beads in a shell.  This makes it hard to weigh precisely and they will not change that policy without authorisation from my GP who is not aware I am tapering: I do not want to involve my GP any further (understandably - as it was the same GP practice that put me an the road to hell in the first place)

Things go well with tapering but I seem to hit a wall around a month ago.  The symptoms were similar to Bell's Palsy on the right side of my face.  It felt like I have been punched by a boxer: my ear was sore and ringing like a bell and my face was tender and sensitive.  My hearing was super sensitive and partially distorted in one ear (RH).

Before you jump to a diagnosis, I saw the GP Practice Nurse (skilfully bypassing the Doctor himself - thank god) and she checked the ear out and said all was well with no physical presentations.

Therefore it was not an infection. The only explanation is a flareup of my original WD effects either due to Duloxetine tapering or just a window of deterioration on the timeline to recovery from my original Mirtazipine CT. Currently I am at 50% of the originally prescribed dose of Duloxetine and reducing by no more that 10% or the last dose each month.

I still have the ringing tinnitus which moves around my head and on bad days is pulsing with a vibration in my right ear. Hyperacusis persists so I can no long engage in noisy social interactions.  Dizziness and a feeling of dissociation with my surroundings is still present to a slightly improved degree which has now stopped me from doing anything on two wheels or up a ladder with any confidence. I had to change jobs after being signed-off work for a year to recover. Nightmares still persist.

One thing I have noticed is that on 60mg of Duloxetine I had a craving for hard liquor. I could easily consume half a bottle of scotch in one session and still wake up feeling fine (!!!) 

At my reduced dose I have reduced cravings for alcohol and my alcohol intake has subsided. I still find the smell of spirits very appetising.

Prior to all of this and prior to any medication my hearing was perfect and I did not drink much.  Mirtazipine made me over-eat and Duloxetine has turned me into a near alcoholic.

However on a bright note, I am still alive but life is no fun.

Any thoughts on the above ?

[arbor]

Hi @ManxKnob--It's amazing how these drugs change our whole systems😬  You've gone through so much...  I'm glad you're "still alive" but sorry that we'd ever have to experience this hell.  Here's some sites that might help in the meantime:

Recovery Success Stories 

 

The Power of Neuroplasicity

 

I recommend browsing the Symptoms and self-care sections for tips from others on getting through this.

 

We don't suggest many supplements, but 3 that many of us find helpful are magnesium, omega-3, and melatonin. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

 

Magnesium

Omega 3 Fish Oil

Melatonin

 

Personally, I try to keep in mind that every day is a day closer to recovery.  Hard as it is to remember some days, healing does happen.

Glad to hear from you,     

Arbor

[ManxKnob]

Thank you for your kind words of encouragement...lots of people are quick to judge and have had no experience of this - particularly Doctors who just look in the BMA drug bible.

So much for the 2 week discontinuation syndrome.....

[arbor]

It's so creepy that they continue to claim such (as my grandfather would say) rubbish...

 

[ManxKnob]

Just an update:  down to 10.5mg of Duloxetine (Cymbalta) which was my pain med for my head symptoms. Now having a resurgence of grinding headaches and buzzing together with deep ear pains.

So is this withdrawal from Cymbalta or a bad window of recovery from Mirtazipine ? Driving me nuts and is making me feel dreadful on waking....basically what I call 3 dimensional Tinnitus....

Any help most welcome. 

[arbor]

Dear @ManxKnob--Good to hear from you, though I'm sorry you're experiencing worse distress.  Gee--3 dimensional Tinnitus. 👺😞👾  I find my Tinnitus is worse in the night and early AM.  It's hard to tell which is causing the resurgence of your symptoms.  Mirtazapine seems to continue to affect the nervous system for a long time.  However, since you're tapering Duloxetine, the cuts are clearly disruptive.  Do you want to reinstate a tiny amount of Duloxetine, or to hold and let the headaches and pain subside?  What has been your pattern as you've tapered Duloxetine?  Do you usually have some destabilization?  Do the symptoms get better later in the day?  My main concern, reading this, is for the destabilizing effects of your most recent cut.  When did you make that cut?  I'm peppering you with questions:  are you taking any herbs?  Alcohol? Nicotine?  Here's a link for reinstating:

About reinstating and stabilizing to stop withdrawal symptoms

After reading this, and answering the questions, let me know and I can share your situation with the other moderators as well who have more experience with Duloxetine.

Sure thinking of you, @ManxKnob,

Arbor

[ManxKnob]

Thanks fo your swift response and caring thoughts.

Latest news is:

I seem to have stabilised at 11.5mg Duloxetine.  The headaches passed and tinnitus started to become tolerable. Yes I do have periods of stabilisation and windows of recovery but the pattern is random. I am tapering at less than 10% per calendar month. I usually feel like death on waking and often wish I was,;  it usually takes all day to feel good. symptoms lifting around late afternoon.  I feel very tired and the tinnitus is desperately bad in the morning. I am popping all sorts of vitamins and oils too numerous to mention here but have hammered the paracetamol and it is not usual for me to consume alcohol to help blot out the noise. I don't smoke.  3 dimensional tinnitus is how I describe the feeling of my brain vibrating like a transformer with a low humming noise and a whistling noise as well.  My ears still hurt from time to time or most of the day and I can't tolerate loud noises and often have a dissociated and dizzy feeling. I can no long participate in hobbies, social occasions or strenuous physical exercise as it makes my head want to explode..  Suicidal ideation is under control but an escape from the tinnitus and pain is often very appealing. 

I had none of this before taking Mirtazipine.  Once again for the record all my health professionals do not believe the drugs would have caused this and it was something that would happen to me anyway - this in itself makes me feel bitter and suicidal.  5 years into this now and not looking forward to much more of it.

 

[arbor]

Hi @ManxKnob

I'm glad you're feeling better--though sorry that the terrible symptoms are with you.  It takes such strength to live through this.

On 9/25/2021 at 6:17 AM, ManxKnob said:

Once again for the record all my health professionals do not believe the drugs would have caused this and it was something that would happen to me anyway

Knowing that the pharmaceutical companies and their doctors haven't slowed down their prescribing and in fact are now focusing more than ever on children, I'm trying to speak out when I can, or when w/d symptoms don't make speaking at all nearly impossible.  Here is a link to Alto's recent publication that I think we can ask our doctors to read:   

 

What I have learnt from helping thousands of ... - PubMed

 

All my best to you, ManxKnob.  I will be so happy when you (and all of us) are feeling better--

In the meantime, good to hear from you,

Arbor

[ManxKnob]

On a lighter note, I can recall some of the advice I was given when I was in the depths of despair, suffering and suicidal with W/D.  This advice was dispensed was family and medical professionals...

• I am telling you its not withdrawal you are just suffering with rebound depression (NHS Psych) 
• move your wife into the spare room. (so I could sleep better)
• it has made you a better person (was I a bad person before ?)
• Go for a walk / swimming. ( when I felt sick with pain and dizziness)
• stop reading **** on the internet
• get a hobby
• tell your in-laws to stay in a hotel (when they had to stay for a few months between house moves)
• do [fill in the blank] to take your mind off your-self / problems
• just start taking the pills again
• everybody has ringing in the ears !

...ad nauseum 

Edited September 30, 2021 by ManxKnob
additions and typos

[arbor]

I'm glad you can laugh at this list @ManxKnob--

Also hope you're doing ok.

Thinking of you,

Arbor💜

[ManxKnob]

I am getting headaches and increased tinnitus whilst tapering on Duloxetine. Currently on 10mg. Help !

is this drug worse than Mirtazapine?

[arbor]

Hello @ManxKnob  I'm sorry you're suffering these increased symptoms.  I have been away and so apologize for not responding sooner.  It could be that Duloxetine was masking some of the w/d effects of Mirtazapine.  You may want to hold until your body senses greater stability and then taper more slowly at lower percentages.  I'll send you links to tapering more slowly when I'm on a different device. 

How are you doing today?

Arbor

[arbor]

Here are some links I hope will be useful @ManxKnob.

You may want to try smaller cuts and longer holds. Some people need to really slow down as the dose gets lower. Possibly making cuts between 1% - 5%. 

Micro-taper instead of 10% or 5% decreases

The Brassmonkey Slide Method of Micro-tapering

 

Meanwhile, when do you feel the headaches and tinnitus the most?  How is your sleep?  Do you feel any increase in other symptoms?

Healing wishes--💜

Arbor

 

[ManxKnob]

Hello Arbor - many thanks for your kind words and the links to tapering.  Latest news is that the symptoms made me consult my GP Practice Nurse who is very helpful and she has spotted ear infections in both ears.  This is good news one one level as it gives a physical reason why I have been feeling rough.  Since starting Mirtazipine , historically I have had a spate of these infections over the years and have heard this can also be linked to antidepressant use.

Has anybody else experienced this I wonder ?

I am now holding my Duloxetine dose at 10mg for a while until I sort out the ear infection  and the tinnitus decreases to its baseline. The ear drops prescribed are actually eye drops as the alternative is ototoxic.

In answer to your questions the headaches and tinnitus are most bothersome first thing in the morning.  The tinnitus is also aggravated by exercise as I can feel the blood rush to my head and ears with a sensation of pressure. Sleep is actually pretty good now. I slept through from around 11pm to 5-30 with a 3-30 wakeup.

I'll proceed with a micro-taper in the new year......

[arbor]

Dear @ManxKnob   I'm glad you got some help for your ears!  

I've been having problems with my left ear on top of the ongoing tinnitus.  Recently I've been icing my ear and the glands below it--which has improved it  Amazing--something helping!  It also seems to help the tinnitus which I have only in my left ear.

 

So glad to hear about your improved sleep!!

 

Thanks for the update 🙂

Arbor

[ManxKnob]

What actually causes the Tinnitus?

Is it the CNS shock in withdrawal?

mirtazapine is supposed to be non ototoxic. 

[arbor]

Hi @ManxKnob

I don't think there's a definitive answer right now.  Plus there may be different kinds of tinnitus, caused by different issues.  My guess is that ours, related to psycho-drugs, is--in complicated ways--related to inflammation of the inner ear.  I recommend Omega 3 Fish Oil.  And, of course, avoiding stress.

I send you healing wishes,

Arbor

[ManxKnob]

Well,  just a New Year update.

Down to 9.0mg Duloxetine.  Not doing too bad but Tinnitus is still a distraction.  However I think I am experiencing periods or windows of stability or recovery.  Not taking as much paracetamol and limiting alcohol units as much as possible as this does nothing to improve sleep which is a valuable commodity.

I still have problems with concentration and focus and feel the W/D has made this worse - probably given me a dose of ADHD ?

[Blossom71]

Hi @ManxKnob

 

I've just read through your thread and it sounds like things are a bit easier for you at the moment. I’m glad for you.

 

I get you with the tinnitus. Mine probably started about 2 years ago which funnily enough lines up with around when I started to reduce my drugs. It’s ramped up again a little bit this last 2 weeks since I started tapering again. Most of time it isn’t too bad and can ignore but today it’s whistling up a storm 🙄

[arbor]

5 hours ago, ManxKnob said:

I think I am experiencing periods or windows of stability or recovery.

Hi @ManxKnobI'm so happy to hear this!  Thank you for the update.  Yes, the tinnitus seems to be a longer lingering symptom.  I look forward to it disappearing for you and for all of us💗🙏🕊️

[ManxKnob]

Well,  having a relapse.  Feeling spaced out, nauseas and tinnitus is dragging me down.

How long is this to go on for ?  it'll be 5 years in July since CT and being hospitalised.  Now finding the symptoms are in danger of dragging me down but I'm not increasinging any AD meds.  Im just sticking with Duloxetine at 8.0mg (measured by weighing beads)....

[arbor]

So sorry you're having to go through this relapse @ManxKnob.  I send you wishes for stamina and healing.  💜💜💜

Arbor (as if to sympathize, my tinnitus is also in high gear)

[ManxKnob]

It's really difficult to understand and describe. The medical profession just look at you as you are crazy.

This issue is a direct result of Mirtazapine / Remeron. 
Has anyone taken a U.K. Class Action against the people who push this stuff?

it's certainly cost me £1ks in lost earnings due to debilitating symptoms.

[arbor]

Hi @ManxKnob  If you type in "legal action: survivingantidepressants.org" to your browser, various threads will lead you to conversations on this topic.  

Utterly depressing.

All my best to you, ManxKnob.  I look forward to you being free of this.

Arbor

[ManxKnob]

interesting reading...seems like I may have jumped from the frying pan....

Continuing to taper Duloxetine by weighing the beads however I am not using a capsule. The sooner I am free of medication the better.  My pharmacy has told me they can not guarantee which type they are supplied: either beads or mini-tablets.  They are sent whatever the drug wholesaler has in-stock at the time.

The soon I am off dependency and at the mercy of all of this the better...

[arbor]

Hi @ManxKnob

 

Good to hear your update.  As you know I support your freedom from these unconscionable drugs.  I'm glad I'm off of them, though I'm still suffering.  But I do want to stress caution around tapering too quickly towards the end of your taper.  I hadn't found SA when I was "tapering" and reduced, then quit too quickly.  I ended up being taken by friends to the ER.  I urge you to go very slowly, patiently, carefully.  We can message more on as you go, if it's useful.  You might be finding other people's testimonies useful as well.  You've accomplished so much in terms of w/d, but this last drug can be daunting because then you won't have any AD support at all.  I wish so very much that you could just walk away from them, that we all didn't have to deal with the excruciating effects of these drugs.  Please keep in touch--

Best to you.

Arbor

 

[ManxKnob]

As way of update I am now down to 50 beads of Duloxetine.  Head symptoms have flared up and now suffering with pressure and Tinnitus    is on debilitating mode.

Not sure what to do......

[arbor]

Hi @ManxKnob--So glad to hear that you're down to 50 beads.  Good for you.  How debillitating are the head symptoms?  Do you find they vary?  It can be useful to keep track of the severity and times as well as circumstances (before meals, night, day, social interactions, diet, exercise, etc.).  They might all have an effect.  I still recommend fish oil, melatonin, and magnesium for these symptoms.  Also, for myself, I've found taurine supplementation helpful.

 

Rate symptoms daily to track patterns and progress

Magnesium

Omega 3 Fish Oil

Melatonin

 

Thank you for the update.  It means a lot to know how you're doing.

Sending best wishes,

Arbor

 

[ManxKnob]

Hello again - Just a further update.

I have updated my signature and you will see I am now medication free.  However the head symptoms have worsened and have daily headaches.  The tinnitus can be particularly bad with multiple frequencies occurring together with pressure. Sensitivity to noise is still there and this is making life miserable.

Currently not really working as the head symptoms are debilitating on some days.

Occasionally also have gastric issues but this has improved.

My GP wanted me to go back onto Duloxetine (Cymbalta) but I have refused as I can not risk another episode of withdrawal.

I can live with some Tinnitus - but not at this level as it is dominating my life and is cognitively disabling.

So, not sure what to do now. Hopefully it will improve? Who knows ?

Sleep is better but waking up and functioning is difficult.

Just to recap - my hearing was perfect before taking medication.

I can't believe doctors still push this poison.......

[arbor]

Wow, you've reached zero!  Talk about a celebration!  I am so glad for you, @ManxKnob🍺--This is truly big.  And you're hanging in there.  I think it takes a lot of wisdom and stamina to withstand the offer when our doctors are still pushing poison.  I too suffer from ongoing tinnitus and the misery of noise sensitivity.  I want to let you know that it is steadily improving, and some mornings I wake and the tinnitus is hardly there.  Even if it takes awhile, I predict it will get better and better for you.

6 hours ago, ManxKnob said:

Sleep is better but waking up and functioning is difficult.

This is also good news about your sleep.  It would seem bound to make a difference as you progress.  If it's useful to know, my functioning is slowly, slowly better.

Thanks for the update.  It means a lot.  

Thinking of you,

Arbor

 

[getofflex]

Wow good on you for getting off the drugs and refusing the cymbalta!! Woohoo!   Like arbor said give it time.  Natural self care and nondrug skills are the ticket. I got off drugs a few months ago and am improving very slowly and haltingly. But it’s improvement so I’m thankful. 

[getofflex]

This person had tinnitus throughout withdrawal and now he is recovered and the tinnitus is gone.

 

https://www.survivingantidepressants.org/topic/24768-dabro-2-years-not-2-weeks-pfizer-but-finally-healed/#comment-531268

 

[ManxKnob]

Thank you to Arbor and Getofflex for your encouraging words and wisdom.  

Yes there is cause for celebration but somedays I wonder if I should take something just to enable me to work properly and deal with the symptoms.  However I can not go back to that situation.  I shall continue with the self care and will let you know how I progress.  I have found some support on FaceBook with helpful groups for Mirtazipine and Duloxetine and there are doubtless people out there who are really suffering.

Is this the best place on the site to post further updates or should I start a thread elsewhere ?

I do have some tips and findings which I have learnt over the past 5 years which other members may find helpful.

Many thanks !

 

 

[ManxKnob]

So, just a new year update really.

still Anti-depressants free and the only med I’m taking is occasionally paracetamol for the headaches.

I don’t seem to have any histamine issues since Mirtazapine although I did have a week of stomach cramps in late December which could be a Duloxetine legacy.

Remaining issues now are the grinding Tinnitus and Dizziness.

Dizziness may be too strong a description: it’s more like a spacey disassociation foggy sensation on moving my head too quickly. Both issues are debilitating on a bad day especially combined with headaches and a bad nights sleep. I’m looking into the links provided above but I live in hope this will improve in time…?  
Thank you….