Oaktree1: tapering from Remeron while dealing with Cymbalta withdrawal

[Oaktree1]

I am newbie here.  I have a long history with other psychotropic drugs and several DSM diagnoses over the course of my life and I am now well over 40 years of age.  I won’t go into the totality of it as it would take too long and the moderators have enough to do.   I just want some advice on getting off Remerone (Mirtazpine) and dealing with what I think may be ongoing withdrawal from Cymbalta which I stopped taking 2 and half years ago.

 

My story in as brief as I can make it (not great at editing)

I started to suffer with chronic back pain in 2007 when I was 36 years of age which resulted in severe insomnia and work absences and was not resolved by manual treatments or exercises.  It was eventually diagnosed as fibromyalgia and I started to take 50mg Trimipramine, brand name Surmontil for sleep in 2007.

 

By 2014 it was no longer working for the pain.   I had met people on a pain management course for arthritis who were taking Cymbalta.  I saw the rheumatologist about it.   She said Cymbalta was good for nerve pain so I decided to give it a go as I was desperate for the pain to stop.

On the first night I stopped the Surmontil I got no sleep and began in the next three days to experience severe anxiety, restlessness and insomnia. 

I took my first Cymbalta pill (30mg) four days after stopping the Surmontil.  The back pain went away within 24 hours of taking it.  I was ecstatic.  However the anxiety and insomnia that started when I stopped the Surmontil got worse.  For the first time in my life I got akathisia and panic attacks.  I could not sit still or concentrate – I couldn’t even watch TV and I’m a big TV watcher.  I walked about 12 miles a day and could not eat.   I was prescribed sleeping pills but still got no sleep.  I spent the night pacing around the house and lost over a stone in weight (I’m relatively slim for my age so a stone is a lot for me).

 

After six weeks of this was I was near breaking point and saw a psychiatrist.   A friend of mine had been taking Remerone (Mirtazapine) and found it wonderful for sleep.  I was desperate for sleep so I asked the psychiatrist if she could prescribe me some and she gave me 30mg of it and some Rivotril and Seroquel to take as needed.  To be honest I think if I hadn’t gotten the Remerone I might have gone psychotic from the lack of sleep.  I got my first night’s sleep in six weeks and stabilised within a month.  After two weeks I reduced the Remerone to 15mg.

 

For the next four years I was ‘stable’ on 30mg Cymbalta and 7.5mg Remeron except for regular appalling migraines which I put down to approaching menopause.  After approx. eight months the pain killing properties of the Cymbalta pooped out and I started to get pain again but it was manageable. 

In 2018 my blood results showed dangerously high cholesterol and liver enzyme readings.  I rarely drank – maybe a glass once every six weeks.  My psychiatrist said it was the Cymbalta and said I could have a drug holiday as she called it.  She told me that I could stop the Cymbalta immediately as 30mg was a low dose but by this point I had finally realised from stopping the Surmontil that this would not be a good idea. 

 

 I looked up the instructions on tapering on this site and some other sites and purchased the book ‘The Antidepressant Solution’ by Dr Joseph Glenmullen on withdrawal from antidepressants.  I bought a milligram scale and started a journal documenting my titrations by removing a number of beads and decreasing by 10% of that reduction every two weeks.  I documented my withdrawal symptoms in a journal.  I started the titration on the 2^nd of June 2018 and finished on the 20^th February 2019.  

 

Even with extremely slow titration I began to experience insomnia, anxiety and restlessness and my mood began to drop in July 2018.  I took herbal, vitamin and omega three supplements throughout but to be honest I don’t think they helped greatly.   I thought once I was off the drug the side effects would dissipate completely but two weeks after my last taper they got much worse.   I had constant debilitating anxiety, insomnia and began to experience regular suicidal ideation.   I was unable to concentrate.   I had also tapered my dose of Remeron down to 3.75mg in tandem. 

 

I had developed eczema on my hands and feet four months before I started the taper from Cymbalta and this continued unabated.   The only thing that brought down the anxiety was HIIT workouts but the hip issues I had been dealing with for the previous 4 years acted up again I had to stop the classes.

I started bioidentical HRT in September 2019 and though the progesterone did help with sleep a little bit it did not resolve the anxiety and suicidality.

 

The following year 2019 I again sought psychiatric ‘help’ as I was at the end of my tether with suicidal thoughts and severe anxiety.   I was told I was bipolar.  I got a prescription for Lamotrigine 50mg in January 2020.  

 

 I got assessed for Autism spectrum disorder as a therapist I had been attending had kept banging on about my being on the spectrum for several years.  Two weeks before the lockdown occasioned by the pandemic in 2020, I got a diagnosis of ASD and was told the other diagnoses I had been given over the course of my life of borderline and bipolar disorder were probably incorrect.  

 

The local mental health clinic had shut down due to the lockdown.  My anxiety was very bad and I had no other meds to ‘help’ so I started taking the Lamotrigine in June 2021 and within nine days developed a rash.  I sent photos to my GP who told me to stop taking it because it could prove dangerous.  I tried taking it again three weeks later – same rash.  On this occasion my GP told me I could not take it again.

 

I finally got an appointment with the Mental Health day clinic and got 150mg Seroquel.  I had upped the Remeron up to 7.5mg again.  After being on the Seroquel one month I developed stomach issues and was prescribed Omeprazole.  I had to take laxatives and enemas for constipation.   I lasted on this dose until October 2020 when I got a bowel impaction an enema did not fix which was scary.  I gradually weaned the Seroquel dose down not very scientifically until December 2020 when I stopped taking it completely.  I noticed that since taking the Seroquel that I had developed muscle cramps and pains in addition to the chronic pain I already had.  In the last month I started doing somatic exercises which have proved quite helpful.

 

My anxiety has continued but I have held off taking anything else like Rivotril or Lexathan which I had a small supply of as the rebound anxiety they cause is not worth it. 

 

I am 2 years and four months off the Cymbalta and am currently still on 7.5mg Remerone in tablet form.  I would like to get off Remeron but accept that it might not be possible.    Once I had titrated down previously to 3.75mg the weighing scale would not register any further decrease in weight and there are no chemists where I live who will liquefy the dose down.   I missed the dose by two days once when I ran out once and nearly ended up in A&E with fever, vomiting and diarrhoea. 

 

My immediate concern if someone has managed to read this far is how much longer does the Cymbalta withdrawal last?   

And if this any way in hell that I could ever get off the Remerone?  

 

My sleep has stabilised somewhat over the last three months and I now get five/six to seven hours per night most nights.  My anxiety is still very high but my living situation is very difficult and I don’t have any significant support.  The pandemic removed the few support structures I did have so I think this has a bearing on things.

 

I have found that the amino acid Lutein helped the eczema which is now (touching a lot of wood) manageable though I still can’t wear jeans because of the nickel.

surviving antidepressants timeline.docx

Edited June 21, 2021 by arbor
had to upload timeline

[arbor]

Dear @Oaktree1,

 

Welcome to Surviving Antidepressants. 

 

I'm sorry you've had to experience such a difficult time both on and off these medications.  As you can read on this site, you are certainly not alone.

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 listing your medication signature.  This will help us in responding to your questions now and in the future.

 

As I read your introduction, I'm struck by your strength and perseverance.  Even as you are going through Protracted Antidepressant Withdrawal (PAWS) from Cymbalta, perhaps increased by exposure to some of the other drugs, you have held off from taking more medications in case there could be further complications.  Two years and four months of w/d can feel like a terribly long time, so let me address your first question now:

 

On 6/20/2021 at 5:28 AM, Oaktree1 said:

how much longer does the Cymbalta withdrawal last?

The symptoms you describe are typical.  The damage is not permanent but we can't predict how long it will take for you to heal.  Some people return to normal fairly quickly while others take longer.  But what you're experiencing isn't a permanent condition.  Time is the great healer here.  We need a lot of patience to deal with the healing process.  The following links address some of the conditions you may be experiencing:

 

 

Brain Remodelling 

 

Video:  Healing From Antidepressants - Patterns of Recovery

 

What is withdrawal syndrome?

 

I want to comment that this is a very good sign:

On 6/20/2021 at 5:28 AM, Oaktree1 said:

My sleep has stabilised somewhat over the last three months

 

To deal with anxiety and other issues of distress, these sites can be useful:

 

Non-drug techniques to cope with emotional symptoms

 

The Dr. Claire Weekes Method of Recovering from a Sensitized Nervous System

 

In fact, there is a wealth of information and experience that you can browse here, especially under:

 

Symptoms and self-care

 

Your second question:

 

On 6/20/2021 at 5:28 AM, Oaktree1 said:

And if this any way in hell that I could ever get off the Remerone? 

 

It is my opinion that you can.  If and when you should decide to do so, moderators can help you consider the best course for tapering.  My sense is that for now, allowing your system to stabilize is useful, and as you feel comfortable, then go forward with reducing Remeron.  You have good experience at this point to have learned to attune to your body going through this.

 

This is your Introduction site where you can ask questions and connect with other members.

I'm glad you've found us, and I encourage you to share here and keep us updated.

All my best to you,

Arbor

[Oaktree1]

Dear Arbor,

 

Thanks so much for the information and links you have provided and for the remarks about strength and perseverance - means a lot.  I will take my time to read through them all and consider my options.  

 

Unfortunately I have to watch myself around my family of origin.  When I had the cold turkey reaction to stopping the Surmontil and experienced the side effects from both starting and stopping the Cymbalta, that was interpreted by them as my 'illness' and strong pressure was put on me to re-enter the psychiatric services on these occasions - I did re-engage with the services as is written above.   None of them are interested or support the idea that what I experienced was withdrawal - I have tried to share information with them but they either don't reply or say that they don't want to talk about it so I have  tried to respect their boundaries now and try not to do so any more.   My biggest fear is being put into a psychiatric hospital so I know I've got to watch myself around that.  

 

 I appreciate that if you are dealing with someone who is continually distressed and suicidal as I was, that is extremely wearing on the people you may be connected to by family ties and over time and it does wear other people down.  I suppose it's only natural that when other people are continually dealing with a distressed person - that want the person to seek 'help' and see the person as irresponsible for not having done so.   Unfortunately there is someone within my family of origin who is directly involved in that service and that person was contacted about me when I was very distressed in the middle of withdrawal without my knowledge.  So I have to be very careful about monitoring my symptoms and not being emotionally reactive on any level.  

 

I am a pretty angry and reactive person generally so quite trying to be around so can appreciate their response - I am working on that.

 

Oaktree1

 

[arbor]

Hi @Oaktree1

 

I sympathize with how difficult this can be.  I'm sorry that your family doesn't understand the crippling power of these medications to cause distress.  In dealing with my angry neuro-emotions I have found these sites helpful:

Stress During Withdrawal

 

and especially:

"Change the channel" - dealing with cognitive symptoms ...

 

I'm glad to hear from you.  Keep us informed as to how you're doing.  And remember, you're not alone...💜

Arbor💜

 

 

[Oaktree1]

Thanks Arbor,

 

I appreciate your post.  I will check out the links you have supplied.  I have decided not to proceed with the Remerone taper for the moment although I am gathering up the 'tools' to do so such as the syringes, and Maple syrup etc.  I plan to liquidise the dose with a stabilising agent like Maple syrup.  

 

In the past week I have been very shaky.  I regularly feel hopeless and not a day passes but I don't look forward to the 'end' not that I would do anything about it - I think psychiatrists call it a 'PDW short for passive death wish'.  

 

Will check back again when I start my taper hopefully within the next few months.

[arbor]

Dear @Oaktree1--

Gosh, considering about what you've had to go through with these medications, no wonder you're feeling very shaky and hopeless.  I wish I could give you a hug.  I also know that feeling of so-called "PDW".  These drugs and their doctors are causing untold suffering.  Please know that I'm with you.  It's not unusual to still be suffering the effects of Cymbalta w/d.  Also, my guess is that your system is still reeling from the effects of Lamictal and Seroquel.  The fact that you've got off the medications you have is really impressive.  I support whatever is calming for you right now.  How are your stomach issues?  Have you been able to regain weight?  I truly believe a healthy future is waiting for you.

Keep in touch 🍀

Warm wishes 💗

Arbor

[Oaktree1]

Dear Arbor,,

 

Thanks so much for your message and the encouragement about the med taper.  Since I stopped the Seroquel thankfully I don't have stomach issues.  

 

As soon as Mirtazapine was added to the Cymbalta mix back in 2014 the weight piled on and it was hard to keep it off.  I will try and read the links you have posted.   Last week things were so tough I did take one Seroquel and a Rivotril one night but haven't done so since.    I will try and read up on the Claire Weekes book and other things to calm down. 

 

Thank you again

Oaktree1

[Greatful]

@Oaktree1Hi, I was reading you into.  I am sorry you are going through all this.  I am very impressed with your strength and courage.  To go through all that pain and suffering by yourself really does show how strong you are.🌺

You are not alone.  Look through the into page, find a few members to connect with.  It does help to share stories and give and receive support and encouragement. 

I will be around if you want to talk☺️

 

[arbor]

Dear @Oaktree1--I hope you will be feeling a little bit better soon.  Healing from these drugs is often a very slow process.  Here's a site that might help with recognizing the up's and down's of what we're going through:

Windows and Waves Pattern of Stabilization

 

3 hours ago, Oaktree1 said:

Last week things were so tough I did take one Seroquel and a Rivotril one night but haven't done so since. 

 

Unfortunately, there's the risk of making our symptoms worse when we take these drugs randomly, so I want to share this site with you that explains what happens:

Keep it Simple, Slow, and Stable

Considerations About Stability Stop Jumping Around

 

I know I've given you a lot of things to read at a time that it's especially hard to concentrate.  This is hard.  You're doing a good job hanging in there.  My thoughts are with you.

Arbor💜

[Oaktree1]

Thanks Arbor and Grateful,

 

I appreciate your posts.  I have been so low that I haven't read any of the links but I will try to do so over the next week I think.

 

I appreciate that there are other people on the site but I am extremely alone unfortunately and and since the pandemic that has gotten worse.   I have not worked in years and I come from a family background where there was serious abuse and neglect.  I am pretty crap with people generally; tend to get used and thrown away and was frequently bullied in work and social situations (that's now being put down to autism but I don't know if I buy that).  

 

I have decided to stay on the drug I am on as I can't risk going any lower.   I think my main aim is to try as you have posted above to stabilise if that is possible or at least to find some sort of acceptance with where I am at at present before I reduce anything further.  I have to accept that that might not happen and I might be on Remerone long term but if I decide to do so I will post on here again.  The main thing for me is to avoid going into a psyche hospital - I would jump in a river rather than go into one of those places again.    

 

Oaktree1

[arbor]

Dear @Oaktree1I'm truly sorry you're feeling low.  I can commiserate.  Yes, I imagine there are many of us who feel alone--made worse by the pandemic, and especially made worse by the way w/d affects our thinking.  It feels like it kindles that part of the brain responsible for feeling alone and isolated.  People who haven't experienced this could never imagine how horrible it is.  I agree, it's good to stay as far away from the psyche hospital as possible.  

14 hours ago, Oaktree1 said:

I think my main aim is to try as you have posted above to stabilise if that is possible or at least to find some sort of acceptance with where I am at at present before I reduce anything further.

I support you, and hope that you will be able to bring kindness and compassion to yourself as you find your way.  Stay in touch as you wish.  It's good to hear from you.

🌳Arbor

[Greatful]

@Oaktree1 Hi, stopping by to see how you are doing?

 

[Oaktree1]

Hi Grateful and Arbor,

 

I have survived a few bouts of suicidality over the past while -  I liken it to the cravings I got when I gave up smoking only the suicidality lasts longer.  the craving for a cigarette generally lasted 15 minutes or so but the suicidality lasts on and off for a 1 to 2 days.  I am over it presently.  I find that if you accept the desire to do away with yourself and ride it out it generally dissipates eventually.

 

The reason why I am specifically posting here today relates to muscle/joint pain with Mirtazapine.   I have been suffering from this for a while.  The issue is complicated by the fact that i was diagnosed with fibromyalgia in 2007 due to back pain but fibromyalgia relates to widespread pain and I only ever had pain in my lower back on the left hand side.  That was the reason why i started to take Trimipramine at 50mg and was on this for 7 years when I was switched to Cymbalta 30mg.  I had to take Mirtzapine six weeks after starting the Cymbalta because I could not sleep on the Cymbalta.  As you can see from my intro, I am off Cymbalta a while now.  I was put on Seroquel in June 2020 and came off it myself in December 2020.   In September 2020 i started to get joint pain in the ring finger of my right hand - that has spread now and I am now getting pain at my elbows, shoulders, and on both hips.  I cannot walk fast anymore and tend of hobble along and am stiff all over like I have a layer of wet cement all over my body.  I have attached an article on aralgia induced by Mirtazapine.  Given that I have been on the drug since 2014 - is it likely that it is causing some of the pain?  The pain is specifically tonicity or widespread muscle spasms.   I am off Seroquel for over six months and off Cymbalta since February 2019.  I am also mid menopause which complicates matters

I have attached the link below to the article associating Mirtazapine and aralgia.  Could the Mirtazapine be causative of it or would it be other factors/previous drugs etc?  Any advice would be appreciated 

https://databankws.lareb.nl/Downloads/bjcp2005_1375.pdf 

Oaktree1

[Greatful]

@Oaktree1 I am sorry your pain is getting worse.

 

2 hours ago, Oaktree1 said:

diagnosed with fibromyalgia in 2007 due to back pain but fibromyalgia relates to widespread pain and I only ever had pain in my lower back on the left hand side. 

Are you thinking that you were diagnosed wrong?  

When you want someone attention tag them by @ start tying  their name , it will appear,  click their name and it will highlight in blue.  This will notify the person.

 

You are doing a great job working your way through this painful journey.   

I am encouraged by your strength and perseverance, you truly are a strong woman to go through this alone with no support at home.

We are here for you if and whenever you need us.😊

 

[Oaktree1]

@arbor @Grateful

 

Thanks for the tech support Grateful and your other supportive comments.   Initially yes I think I was (diagnosed wrong)- what I am concerned about is whether the Mirt is contributed to the muscle spasms/joint issues. I've been on it now over 7 years.

 

I am also beginning to wonder whether it could be contributing to the eczema but more particularly to the allergic reactions I keep having to products (even hypo allergic) products I have been using.  It started in 2018 when I got a serious allergic reaction to nail polish (which I've worn on and off all my life).  since then I have gotten allergic to nickel (I can't wear jeans anymore because of the metal in the zip and buttons) and then the allergy spread to other things.  I had to stop using soap, then the scented body butters I've been using for years so finally I ended up using hypo allergic products - they are now causing a reaction so It's gotten to the point where I am using baking soda to wash my hair.  Up until I was 48 I'd never had an reaction to any skin product in my life and lived in jeans.  I know that Mirt acts as an anti histamine but I am wondering whether the long term use of it contributes to eczema/allergies by perhaps wearing out the receptors that control histamine response in the brain.  I am a worrier and a catastrophiser so perhaps I am imagining it but was wondering if anyone else on Remeron had this experience.

[Greatful]

@Oaktree1  I have read from other members that they experienced allergies, dry skin, muscle soreness  from Remeron.  I think your right it has to do with the antihistamine in the drug.

Check out atimirt   thread.  Go to the search bar at the top of the page and type in atimirt  it should bring you to her posing history.  Find her intro page.

That is the only way I know how to find someone, maybe there is a quicker way?

[arbor]

9 hours ago, Oaktree1 said:

I have survived a few bouts of suicidality over the past while - 

Dear @Oaktree1!  I am terribly sorry you've been going through these kinds of feelings.  Incredibly difficult.  Your hard-won wisdom is a gift to all of us:

9 hours ago, Oaktree1 said:

I find that if you accept the desire to do away with yourself and ride it out it generally dissipates eventually.

 

As for your questions about mirtazapine in relation to your fibromyalgia, there seem to be a few complicating considerations, but psycho-drugs, especially, AD's, are being linked often with it.  Other members also report tendon and joint issues related to the drugs.  By complicated, I refer to the fact that it may be hard to discern how much symptoms are related to w/d from Cymbalta and even Seroquel, how much to mirtazapine, and how much to their interaction.  Perhaps these links can be helpful:

Fibromyalgia Flare Up and Withdrawals - Symptoms and self ...

Fibromyalgia caused by serotonin syndrome? - Symptoms ..

Sending you hugs and support,

Arbor

 

[Oaktree1]

@Grateful thanks very much that thread was very helpful - I read all of it.

 

@arbor - thanks very much for sending on the other link to the fibromyalgia threads - I will read them tomorrow.  It's 11pm where I'm from so time to try and wind down now.  And thanks for the kind words - means a lot.   

 

I had a lot of pressure from family members to go back on drugs/into hospital over the past few years and  at one point I really felt like I should go back on drugs and into hospital as I felt so awful during and after the withdrawal.  The word from one of them was 'she's not adequately medicated' - that's from the one who's involved in the area directly. 

 

I am working as hard as I can on emotional regulation which is vital if you are connected to people who are not able to be supportive with taper/withdrawal.  Don't be needy/don't shout-cry/and deal with your feelings yourself - that's what I try do to mostly.  Don't always succeed but I am getting better.

 

I did my test run on liquidising the Mirt today.  I hope to be starting this journey soon.  

 

Oaktree1

[Greatful]

@Oaktree1  How are you holding up?

[Oaktree1]

@Grateful Hi,

 

Thanks for taking time to ask how I am doing as you seem to be helping a lot of people out here.

 

I am afraid I would not really be in a position to offer advice to anyone at the moment as I still get hours during the day  when I gets bouts of suicidal ideation.   Not every day and some days it's worse than others.  Last week when something really upsetting happened I was MIA lying under a weighted blanket from 3pm until 10pm as I became overwhelmed - that was only once last week though.

 

I transitioned to liquid Mirtazapine using the instructions from the Facebook group Mirtazapine, Support, withdrawal, recovery on the 6th of August so I am into my third week of that now (still on the same dose 7.5mg) and I have had some 'issues' with sleep (not every night), worsening muscle spasms and anxiety and depressed mood.  Apparently some people also had issues with the transition so I will need to stay on it for six weeks. 

 

After that time if I still am on planet earth i.e. not ravaged by Covid or a hurricane, I may make the first cut - probably not more than 7%.  It was fun learning how to use the syringes and dissolve the tablet in the water and maple syrup.  That was the part of coming off Cymbalta I really enjoyed- using the weighing scale to weigh my dose reduction and then putting the beads into a rice capsule and filling in a journal - for once I felt in control. 

 

It's shocking when you type Cymbalta into Google and see it advertised by numerous health and medical websites as being useful for pain without any warnings whatsoever about the withdrawal.   I don't know how much of my issues (mainly pain) relate to Cymbalta withdrawal and how many relate to Mirt.  I have read all of Arbor's links but I can know for definite and I probably won't know until I get off Mirt which will take a long time.

 

I started acupuncture for pain/anxiety/sleep two weeks ago and have had three sessions - so far it hasn't made a huge difference but I will give it a go for another few sessions.  Not hugely hopeful though.  I am trying to do Ingrid Bacci's meditation - her recorded meditations are the only ones that have ever worked for me - she is a craniosacral and Alexander therapy teacher and wrote the book 'Effortless Pain Relief' - I love her voice and find her quite inspirational.  I am not that organised about my time though and sometimes forget.  Thanks again for asking. 

 

oaktree1  

[arbor]

Glad to hear from you @Oaktree1

It sure is amazing what these drugs do to us--

The meditation with Ingrid Bacci sounds good.

[Greatful]

@Oaktree1

5 hours ago, Oaktree1 said:

I still get hours during the day  when I gets bouts of suicidal ideation.   Not every day and some days it's worse than others.

These are scary.   AWFUL to deal with.  One day at a time........

 

5 hours ago, Oaktree1 said:

 lying under a weighted blanket

Don't you just love these.  I have one.  I used it a lot last winter when I was struggling so bad,  I would drag its from room to room.  It really did help with some of the anxiety.  It is great  meditation under. In fact I still sleep with it on the bed.

 

5 hours ago, Oaktree1 said:

It's shocking when you type Cymbalta into Google and see it advertised by numerous health and medical websites as being useful for pain without any warnings whatsoever about the withdrawal. 

 Didn't you know that SSRI'S heal whatever ails you.😵

 

Good luck on your cut.  Are you going to do the Brassmonkey slide taper?

Hang in there you are doing awesome😚

[Oaktree1]

@grateful - yes when I first got mine I was not convinced but have started using it again and it definitely helps.  I am glad it proves a comfort to you.  It beats taking pills that's for sure.

 

@arbor - I got the cd's from Ingrid Bacci's site as I attended a retreat of hers once and I had the best sleep of my life following a day in her presence - some people actually are healers so I recommend her cd's wholeheartedly.  I sometimes fall asleep with them and have never been able to do that with anyone else - I have an issue with trust of men generally doing meditation because of stuff in my past so I can't relax when confronted with a male voice - particularly the voice of an older man.  

 

 

[Oaktree1]

@arbor

 

 

I read your introduction which gave some details of great personal suffering

 

; I read @Grateful too which while concentrating more on reaction to drugs and tapering with less personal detail is sad to read because of the amount of drugs you were on and time you spent on them.  It is sad that so much life is lost in additional suffering as a result of these drugs such as Arbor ending up in hospital because of seratonin syndrome  when life is already full of suffering anyway like @arbor's husband's Huntington's diagnosis. 

 

And yet on the radio in Ireland yesterday I heard yet another person talking about their mental health issue and read subsequently that they praised the  new 'medication' they were on as really helpful.  I am on a menopause site on Facebook and every few days someone will come on and praise their anti depressant as 'life saving' or some other praiseworthy term.  It is hard to live in a culture like that but I have to accept that as Stuart Shipko MD said in an interview I saw recently 'people are very variable'.   A lot of people seem to find their drugs helpful and I know of at least one person ( male) who stopped them with very few side effects.

[arbor]

Dear @Oaktree1

Thank you for posting.  Yes, the use of AD's is confusing.  Zoloft worked really well the first 2 years I was on it.  Of course I didn't realize the damage it was beginning to do in my body (diabetes, fibrosis, etc.)  Nor was I conscious of how it was blunting my responses to others.   I feel a lot of regret for these effects, especially the last--as I can't go back and undo that.  I wonder about a culture in which people need pills to feel good.  In fact, I would be so bold as to draw a similarity between what the pharmaceutical industry is doing to the culture and what burning fossil fuels has done to the climate.  Unfortunately, people who have not had a problem with withdrawal are taken what the norm should be.  Who knows if they ever go on the drugs again, that their ease in going off has changed.  There's fertile ground for judgement in all of this, and so I should watch my reactivity and not add to the judgements, I suppose.  Still, I think the issues you're bringing up are important.

(Again, thanks for the info on Ingrid Bacci.  I'm glad you found her.)

Arbor🙏

 

 

[Oaktree1]

@arbor

thanks for replying .  I hope I did not cause offence by my previous post as I think I lack cognitive empathy which goes with being ASD - I am not much good with people .  
 

I am very taken with your response which compared AD’s to fossil fuels. I think it is more than apt. Like the soma in Brave New World only the soma didn’t destroy  people’s physical health but certainly it did blunt emotional pain.  I do think emotional pain is necessary for growth.  I am sorry to hear about the diabetes but I suppose it is a mark of your empathy that you are more concerned about the emotional blunting you sustained while on the drugs.

 

I also thought the drugs were helping me and would have stayed on Paxil for ever but I became suicidal on it and self harmed something I had never done before or since. I also did things on it that were out of character .  

 

thanks anyway for responding . At least this site is bearing witness 

 

Oak tree 1

[arbor]

Hi @Oaktree1

Thank you for your response--I appreciate how you related it to the soma in Brave New World.

Also, you mentioned:

4 hours ago, Oaktree1 said:

 I hope I did not cause offence by my previous post as I think I lack cognitive empathy which goes with being ASD - I am not much good with people .  
 

I didn't notice anything that could have caused offence at all.  (I feel really terrible with people--especially right now🥴)

Thank you for posting.  It means a lot--

Arbor

[Oaktree1]

@arbor @Grateful

 

I am just checking in here.  I don't come on here at lot as I am addicted to Facebook although many of the support groups can be extremely negative.  People post and state they are in a dire state and then there is a multitude of replies also vouching for their own dire state. 

 

I also feel in a weird way that this site is more public as it is an open forum and is accessed by clinicians as research.  Grateful posted about the brass monkey slide taper - I will have to investigate that one.  I am still on the liquid Mirt at the same dose 7.5mg and will be staying on it until the 17/9/21.  My mood is low - I remember seeing a poster once of a sunset of Jordan with the caption 'Jordan - the lowest point on earth'.   I think of that poster every now and then.   What I am concerned about is that I slide so low that I will not be able to function at all.  I am managing at the moment but am completely joyless.  I can't remember the last time I laughed or smiled.

 

Since the autism diagnosis in 2020 I have not felt part of the neurotypical human race.  I always felt different at some level and could never get on with my female peer group and now it's been confirmed.  I had what I thought were friendships with my own gender but they always ended badly - I haven't had one female friendship that has endured.  Apparently autistic women kill themselves (if they are so called high functioning) on average at age 54 according to a Swedish study.  

 

I read some of the histories here and everyone here has had relationships and/or marriages which I never really had.  I am very odd.  There was abuse in my background and it had the result of making me celibate although I do think if I had not been autistic I would have overcome that.

 

So there are a fair few issues with me even before I took anti depressants.  What I can say with absolute certainty though is that I was managing far better before I was put on them in my 20's.  My primary issues related to loneliness, not being able to be intimate and not being able to make and keep friends - none of that was ever dealt with in the psychiatric system.   I am putting this info here in case some clinician is reading it.

 

I have read that autistics lack cognitive empathy.  I have had to take a crash course in autism since my diagnosis in March 2020 so I just put this here in case I do offend anyone.  I follow both of  your other posts and am impressed at the way both of you support other posters in addition to the support you have given me so just would like to say thank you 🙂 

 

oaktree1

 

[arbor]

Dear @Oaktree1
It's good to hear from you.  You mention

7 hours ago, Oaktree1 said:

Since the autism diagnosis in 2020 I have not felt part of the neurotypical human race. 

I hope it's ok to caution you from taking diagnosis of adult autism too seriously.  It's a fashionable label right now, and as with the other diagnostic labels, usually objectifying and usually alienating. 

 

7 hours ago, Oaktree1 said:

Apparently autistic women kill themselves

Sadly, this is the kind of headline that our worst Neuro-emotions immediately zero in on.  What I've been learning is to doubt studies more and more, especially as we see how studies on AD's have been consistently skewed.  Your nervous system has been roughed up by these drugs.  Allow me to encourage you to bring as much love and compassion to yourself as you can--now while you're riding the terrible waves more than ever.

Check out these links and see if they might help:

 

Non-drug techniques to cope with emotional symptoms

 

Music for self-care: calms hyperalertness, anxiety, aids relaxation and sleep

 

Ways to cope with daily anxiety

 

Dealing With Emotional Spirals 

 

Shame, guilt, regret, and self-criticism

 

7 hours ago, Oaktree1 said:

I have read that autistics lack cognitive empathy.

One of my heroines debunks the universality of this stereotype.  You may be familiar with her:
Animal welfare expert Temple Grandin: Creative problem ...

 

We're all feeling incredibly out of sorts which is so very, very hard to be patient with.  Remember the neuro-emotions thrive on delving into the past and all our failures.  When the temptation arises again (and dang-it, it will) try looking at some of these links:

"Change the channel" - dealing with cognitive symptoms

 

 

Non-drug techniques to cope with emotional symptoms

 

The Dr. Claire Weekes Method of Recovering from a Sensitized Nervous System

 

Many of us are feeling alone.  There are a lot of reasons for this in the world.  The struggle (as I see it) is to recognize that it's only a feeling--often a habit of thought in reaction to pain.  Finding some peace with our pain is a tall order--but may help us for the rest of our lives.  I'm sure with you, @Oaktree1 💗

It's good to hear from you,

Arbor

[Greatful]

@Oaktree1

10 hours ago, Oaktree1 said:

Since the autism diagnosis in 2020 I have not felt part of the neurotypical human race. 

I am saddened that you feel this way.  Please don't ever discount yourself.  We are all apart of the human race and each one of us deserve love and respect.  We are all special and unique in our own special way.  The first place I would like you to start with is, learn how to love  and respect yourself just the way you are.  Autism doesn't make you unworthy or different than the rest of us.. We all have different personalities, different gifts to offer the world, and we all have different  short coming from each other.  You are not odd, you just haven't connected with people that have the same values and personalities.  I have friends that come and go, we are always changing and sometimes that means we will move on from some people.  

10 hours ago, Oaktree1 said:

I have read that autistics lack cognitive empathy. 

Autistics and as with all of the human race can be affected with lack of empathy.  Try not lump yourself in a stereotypical assumption.  I know someone who is very close to me that has high functioning autism and he has a very big and soft heart.  My guess is it could be the ssri's that have caused the lack of empathy and also WD.  

 

11 hours ago, Oaktree1 said:

What I can say with absolute certainty though is that I was managing far better before I was put on them in my 20's.  My primary issues related to loneliness, not being able to be intimate and not being able to make and keep friends - none of that was ever dealt with in the psychiatric system. 

This should tell you a lot!  The ssri's have changed who you really are.  Maybe some of your loneliness and that you feel you can't  connect with people could be left over trauma from your past.  We can develop really unhealthy and distorted thinking from trauma and if you never got help for it you could be shielding yourself unknowingly from vulnerability in connecting with people.  Maybe you would benefit from a good therapist.  Maybe you are not even autistic(even if you are that's okay)and are suffering from unhealed personal trauma,  either way getting good positive help for yourself will help you find the true you.  A healthy you.☺️

 

3 hours ago, arbor said:

We're all feeling incredibly out of sorts which is so very, very hard to be patient with.  Remember the neuro-emotions thrive on delving into the past and all our failures.  When the temptation arises again (and dang-it, it will) try looking at some of these links:

This is so true.......Everything that is going on with us in WD is morphed and our emotions and thoughts are so out of wack.  They seem so real and true, but try and remind yourself that even if a small fraction is true, it is in no way as bad as our thoughts and emotions want us to believe.   When you feel out of shorts with yourself I want you to stop and take a good look at yourself, I mean deep inside and you will see the real you, the loving, compassionate, caring person that you are......The real you without all the personal negativity, crazy expectations that who we think we should be, labels that we use to define us, you are you and that is okay.  Learn, expand, grow and accept, love who you are.❤️

 

This is a tough road to travel and I don't want you to feel alone or different then the rest of us suffering though WD and finding ourselves....

We are all in this together, even with all our personal differences.❤️

[Oaktree1]

@arbor@Grateful

Thank you both so much for your kind and thoughtful replies.  I have read and re- read them and will continue to do so and the links over the next while.   

 

Oaktree1

[Oaktree1]

@arbor @Grateful

 

I started tapering last Friday using the brass monkey method Grateful recommended by 2.5%.  I have followed some of your posts Grateful and am sorry you have been having such an awful time of it recently.   I am going to try and make a positive observation - you do seem to have people in your life who love you a lot and from reading the support you offer people on this site I can see a little bit as to why.  To be loved and accepted for who you are - withdrawal and neuro emotions notwithstanding - is a wonderful thing.

 

For me I still live with suicidality most days.  The suicidality relates directly to what happened in my life and how powerless I feel about what happened to me and the situation I am in now.  I am so angry about the hold that psychiatry took on my life - how I was diagnosed early on following a manic episode after being on a high dose of anti depressants with bipolar, then borderline and now autism.  How these diagnoses when I was stupid enough to disclose them led to further ostracism by family members and so called friends  and how I could finally only really connect with animals.   How the reason I was led to psychiatry in the first instance was I now believe due to a lonely, neglectful and abusive childhood which I will not go into.  Self pity is not a nice trait and I have it in spades. 

 

However the only way I can explain the inhumanity and stupidity of psychiatry is to compare it to how we understand a dog or a cat that has behavioural issues.  We have no problem in recognising that an animal who has been beaten or  otherwise mistreated will become withdrawn, or flinch from human touch, or have fear related aggression or be unable to sit quietly.  However we don't diagnose mistreated dogs or cats with pathological disorders or state that 'yes this animal was mistreated but that triggered the latent bipolar disorder and stick it on a mood stabliser'.  Humans are mammals just like dogs or cats or horses....If someone takes on a mistreated dog or a cat as opposed to euthanising them, the prescription is to treat them with kindness and to be consistent in that so that you can build trust - if you have a damaged animal that may take a long time.   We seem to be unable to do that for our own species though.  The prescription for humans appears to be that if someone is mistreated and develops behavioural issues that you treat them with as much cruelty as possible.

 

When I was young and in emotional pain I had no idea or insights into why I was in pain and I looked to psychiatrists for answers - I thought they were the experts...now I know it was BS...

 

I know of some people who work for Johnson and Johnson (they have a large plant a few miles away from me) and another in another county (state), and they do financially very well out of it and have large benefits and pensions and large houses in the country with land.  Every time I pass that place now - I just think of the Nazis.  Ireland is full of these plants - Eli Lily - the gang behind Cymbalta...  I feel such rage.  I feel rage that two members of my family of origin are psychiatrists and at one point or another pronounced definitively on my difficulties as 'borderline personality disorder' and only two years ago as 'pervasive development disorder'.  One of them was a bio medical academic psychiatrist who had emigrated to the US; back in the 1990's on one of his visits to Ireland when I had my first nervous breakdown and came back to help he said to one of my family members that the research pointed in the direction that it was all biochemical.    I actually believed that crap.

 

That man left my mother a copy of the first definitive book about borderline personanlity disorder which was not even available in Ireland at the time - 'I hate you - don't leave me'.  I can still remember finding this book and reading it from cover to cover desperate to find solutions to my despair and terror only to find out that I was just a defective human being for whom there was little hope. 

 

Since that time they haven't found any bio markers and he has I understand retired and practises Zen Buddhism on a relatively I would imagine large pension.  I looked up to him as having the answers.  I wonder if he ever feels guilty about what he must have done to the thousands of people he put on MAOI's and mood stablisers whose physical health was destroyed by them.  I can't believe I once looked up to him.  Now I see he was just a fraud.  

 

I won't say much about the other one except that I have now cut off contact with them.  I am frightened of them though and am dreading future occasions where I might have to meet with them however briefly.   

[arbor]

Dear @Oaktree1

Thank you for this beautiful (and heart-rending) post.  Isn't it painful when those close to us choose to turn away--

You might appreciate a book that just arrived to me from the public library: "The Book of Woe: The DSM and the Unmaking of Psychiatry" by Gary Greenberg.  Psychiatry is a toxic institution in my opinion, and I'm sorry to hear how its practitioners have affected your life from their self-serving labels to these terrible drugs.  What an insult to buddhism that this man hides behind it.  I'm glad you're going slowly with your taper.  What a survivor you've been.  I look forward to hearing more of your story as you continue your journey.

Hugs to you (and all the animals in your life) (where would we be without them!!)

((((Oaktree1))))

Arbor💗

[Oaktree1]

@arbor Thanks for your kind reply - I am feeling very isolated and frightened at present so it is good to hear some kind words.

 

The retired psychiatrist relative was an extremely charming and charismatic person - he was a good listener too which I think is the essence of being charming and that may be one of the reasons why he did so well in his private practice.  He corresponded to my mother at one point in my life that I was a narcissist. 

 

After my breakdown and time in a psychiatric hospital, I was eventually placed into a secretarial school so that I could get employment but my nerves by that point were very bad indeed.  I was set a typing test and my hands got the shakes and I could not type properly.  The head of the school was present for that and subsequently he spoke to one of my parents and asked whether I wanted a job as a secretary (I presume to avoid trying to place me on his employment database as I was by that point clearly not employable as a secretary). 

 

Neither of my parents spoke to me about what he said.  They went straight to the psychiatrist relative and the story then became that 'I had sabotaged my job interview's'  and as a result that 'I was a selfish narcissist' and so on.  I was at that point really desperate to get any sort of a job and trying to control my nerves so that I was not put back into a psychiatric hospital so that was a pretty dire situation to be in.   I remember trying to defend myself at the time.  I would have loved to be able to do a job as a secretary.  Anything to be part of the normal human race.  I don't recall any of my family bar my mother (initially) being kind to me during that time.  I just became an embarrassment.   One of my family members broke into my room at night and beat me up once during that time.   

 

Anyway after that time my psychiatrist relative fell out with another relative over something else and decided to cease coming back to Ireland so that was that... I agree that it is  very painful when people who are family are or who are 'meant' to be close to us turn away.  I never really had a family in the sense of people who loved and communicated with one another.  My family of origin actually don't communicate much with each other either and don't like each other much.

 

Thanks for the book recommendation.  I might add it to my list although I find that if I read too much or watch too many online talks about the real horrors of historical or current 'mental health' setup that it can become quite overwhelming.  

 

Thanks anyway for the hugs for me and the animals - I appreciate your kindness.   

 

Oaktree1

 

 

[Greatful]

@Oaktree1  My heart goes out to you Oaktree1.  You must know that you are a strong and  a very courageous woman.  You have endured so much and with out the support of family is a testament to your will to succeed in life.   Find the inner self love and foster it.  You can do anything you want in life if you can build yourself esteem.  The biggest support you can find for yourself is you.

 

 Reach out and make friends here on SA.  Everyone here has no preconceived notion of who you are.  We will except you as you are a human being that deserves respect and kindness.  You know we already have something in common, we are in a mess from these drugs.  

If you want to talk to someone more private and maybe have a short conversation daily use the private messaging on the top of the page (the envelope)  

 

I am sending you a big hug🤗

[Oaktree1]

Thanks @Grateful,

 

I am kind of in awe of people like yourself and most of the people that I read the reports of on this site to be honest.  People who are or were married and have friends and families.  I don't have anyone except my poor long suffering mum whom I love dearly .   I lost my last friend in September 2020 last year.   As I said before - rubbish with people.  I am not looking for sympathy here - just underlining a difference.   I was never able to contemplate an intimate relationship due to stuff that happened to me when I was a kid.  Perhaps I am looking for sympathy...when you spend a lot of time on your own as I do sometimes it's hard to know your own mind.

 

 

 Sorry for rambling on a bit...I feel tired and sick tonight.  I did a second reduction two days ago to 5%.  My hands and scalp have been very itchy and sore.  I have decided that I will stay at the 5%  reduction for  the next 5 weeks.  My keyboard is going wonky... and keeps deleting stuff so I'll stop now.  I had three more paragraphs written earlier (long ones!) and then when I pressed the 'enter' key the cursor kept moving to the start of the paragraph and then deleting my paragraphs..very frustrating....I sincerely hope I do not have a virus.  

 

I am glad to read that you appear to be having a few 'windows' over the past while or so in your own posts and have decided to make a further small reduction.  

 

@arbor I read your story online tonight - it moved me to tears.  You write so eloquently as does Grateful - as if you were speaking.  What a story of dreadful suffering.  And of your experiences with your local hospital in thrall to pharma and how you let them have the full brunt of your WA rage.  I hope your sleep improves a little bit over the next while. 

 

Oaktree1