Quetiapine withdrawal continues: there is a light at the end of the tunnel, but I need way more R&R!
Updated: Sep 5
I promised I would be back on the blog at the end of this week with an update, and because I always try to stick to my word – here I am with another post this morning.
I have to warn you though, that I won’t be back for long, because although I had a fantastic holiday in Yorkshire, there has been an awful lot to contend with mentally, for all sorts of different reasons, which I will now attempt to explain in this morning’s post!
Reconciling with the past: a cathartic experience
It’s nearly twenty years since my first episode of severe depression when I bolted out of Oxfordshire in an (antidepressant induced) state of panic and fear, and went up to Yorkshire to stay with my grandmother.
So much has happened since that fateful first brush with mental illness, and although I’ve been back to Yorkshire a few times since, I haven’t ever been well enough to really appreciate and enjoy it.
So, I found myself feeling quite emotional as I was driving up the M1 because so much suffering has occurred in those two decades and it really is a miracle that I’m still here.
The other reason for this residual emotion is that there is an awful lot of reconciliation with the past that you have to go through when you get to the end of one of these prolonged mental illness battles – this isn't appreciated by anyone yet because I don't think that surviving the extent of suffering that I have, and then coming out of the other side, has ever been done before!
Honestly – I really don’t!
Educating the haters
This is something that the ‘haters’ (narcissists who are wrapped up in their egos – post to come in the future on this), won’t understand, empathise or sympathise with at all because they expect you to ‘get over it’ and move on with your life as soon as you stabilise and recover.
This isn’t possible you insensitive idiots because us poor buggers need way more time to heal!
So, once again I am having to be the ‘expert of myself’ and go against the ridiculous pressure and inconsiderate, unfeeling, and hurtful comments that have been hurled in my direction recently, and only do what’s right for me – I am well practiced at this by now, so this doesn’t faze me in the least – but I do admit - it is bloody annoying and something I could well do without!
Anyway, in my attempt to understand all of this fall-out and general unhelpfulness, I resorted to my usual ‘go to’ of bibliotherapy while I was away, and I read two books on the subject; both of them helping me to understand other people and their reactions to those of us who are struggling with our mental health.
One of them reminded me of something I learnt in psychology called ‘Conditions of Worth’ – another Carl Rogers epiphany moment – whereby the individual in question will only love me if I do XYZ or am XYZ, NOT unconditionally just for being me and me alone.
The other is to do with them being too wrapped up in their own ego to be able to be empathetic, and essentially being bitter, self-absorbed, and narcissistic.
The book made me realise that the only way to deal with this is to cut these people out of your life, to protect yourself – it is their job to work on themselves and see the error of their ways through self-development - so that is what I’ve decided to do – bye bye!
More on that in a future post too!
Cutting out the ineffective, ‘brain disabling’ drugs as well
The other thing that people need to understand is that those who have ‘recovered’ (basically cheated death and survived the most brutal of mental illnesses), are going to have been medicated with all sorts of drugs which have damaged their brains and given them a myriad of new side effects and withdrawal problems.
This damage can take a long time to heal, and sometimes withdrawing and recovering from the pernicious effects of these drugs can take months or even years to complete. Very often the doctors will try to tell you that your symptoms are part of your disorder too, which is where you have to stand up for yourself once AGAIN and hold your ground!
I am currently going through this perturbing stage while I still suffer the after-effects of withdrawal problems from the BASTARD antipsychotic quetiapine which I have now been stuck on for nearly four years because of chronic insomnia without it (more to come on this in a future post too).
It's like the ‘sting in the tail’ of this bloody mental illness NIGHTMARE, because when you finally, finally, and MIRACULOUSLY get to the end of one of these severe mental illnesses (unbelievably rare if possible at all), then you are going to have the residual problem of withdrawing from the drugs that were forced on you and then failed you, and this bit, (like all parts of this battle) is not easy to deal with at all!
God help anyone going through this living nightmare – and really I mean it -
God please help us!
The ‘drug culture’ needs addressing!
Not only are the psych medications feeding the epidemics of mental illness but it would also seem that others are falling into the drug trap too – everyone’s on something or other these days – and I don’t care if it’s proscribed, prescribed, pharmaceutical or recreational – they’re all drugs and if they are given to a sensitive brain (whatever they are), then the effects can be catastrophic.
Even caffeine or sugar can be enough to set off a bipolar brain – and you really have to consider a complete rethink when it comes to every stimulant and suppressant that’s going into your body because guess what?! It’s all affecting your brain and therefore your mind as well!
Because of the HELL I’ve been subjected to (hospitalisation, and side effects of: sweats, brain zaps, hallucinations, mania, suicidal thoughts, racing thoughts, mixed state, hives, sleep paralysis, night terrors, etc, etc, etc), I am now anti virtually all drugs, and would definitely never take another psychiatric medication ever again.
I’m one of the lucky ones though, because I didn’t end up with tardive dyskinesia or akathisia from taking and withdrawing from them (at least not yet anyway) – look them up (I’ve added links), and you’ll never take another one of these ever again either!!
Doing what’s right for me and speaking up for others
Having finally withdrawn from quetiapine (Seroquel) by a seven-month slow taper of 10% percent cut of each new dose every 2 to 4 weeks, I’ve now realised that this suggested dose reduction is way too fast!
This has meant that since finally getting off the bloody thing, about two weeks ago now, I have been struggling to sleep again which is just so utterly irritating, boring, and frankly NOT OK FOR VULNERABLE PEOPLE!
On the first night of my holiday, I didn’t sleep at all and at 6a.m I’d finally had enough, so I got up and went for a walk on the beach.
I was thinking about my friend Tom, as well as every other victim of suicide who’s been let down by the substandard system and the ineffective (and sometimes) dangerous and deathly drugs that are being dished out to trusting patients.
While I was walking, I started to feel such rage boiling up inside because I know that some of my friends have died because of the medications, and I very nearly could have done too! (see ketamine FIASCO!)…
Anyway, crossing this with the insomnia and general hell that I’ve been going through with quetiapine withdrawals recently, and I decided to make a pact with myself that I would start speaking the truth from now on, with no hints or evasions - so expect some very honest and assertive opinions when you hear me discussing these medications and treatments in the future!
Resisting the temptation to self-medicate!
When you get to this point in the withdrawal process, and you haven’t slept properly for days, the temptation to revert to self-medicating with caffeine and alcohol is huge. You get desperate because you know that you’ve been through enough suffering, and you can’t put yourself through any more.
I didn’t want to miss any of my holiday either, so I was really tempted to start drinking coffee again to try to stay awake in the day so that I could get through without missing anything, I even started thinking about cigarettes too which was really quite distressing!
This is exactly what happens to people; they revert to old habits and ‘crutches’ because they can’t cope with any more suffering, but the result is that they remain unwell because they are never drug-free and stable.
I don’t blame people who self-medicate because I know the desperation is way too much to bear – especially when the psychiatric meds fail you repeatedly and cause you so much grief, but then there are those who are in denial too - (and brainwashed!) - who go back to their doctor and get medicated for their withdrawal symptoms with another f***ing drug!
They are then in ‘clinical handcuffs’ for the rest of their life which some would argue is even worse than self-medicating – it’s a ridiculous situation and one I’m just not going to get sucked into anymore! Goodbye psychiatric profession!
Fortunately, I managed to resist the temptation to self-medicate, and I resorted to drawing on reserves of patience and persistence, and grounding myself through lying on the grass with my head in the ground and walking on the beach barefoot – surprising how this works and revitalises even the most damaged and sleep deprived of brains!
Anyway, after the first night of complete insomnia, I did then start sleeping again, probably four or five hours on the second night and since then, up to about six to six and a half hours.
I would obviously like more than this but I’m beginning to wonder if the sacred eight hours thing is in fact, a myth, because, as it is with everything else, the right route is going to be different for each individual person.
I think I can cope on six hours sleep if I have to, so I’m just not going to question it anymore. I need to take a few more days away from people and writing to work this out and see if I can settle my brain a bit more than this before I start my NLP (neurolinguistic programming) course a week on Monday!
There is another reason that my sleep has been affected in recent weeks and although I’ve been hesitant before discussing any of this, because I seem to be in a f*** it mood, I have started to talk about this stuff more recently.
This is the icing on the cake in all of this for me because spirituality and mental illness are inextricably linked – I don’t care what anyone else says – I know this to be true!
Astrological influences are also deeply connected to the way we are feeling because we are all made up of cells, and every cell is energy – it’s all related whether you want to believe it or not!
So, having read some more on the subject, I now realise that I am ridiculously aligned to all of this because there was a blue moon on the 22nd August at 8a.m and it was the 21st night that I didn’t sleep at all!
If you are a sensitive empathetic person (an empath) then all of this is going to have an effect on you too…. This is what I’ve had to work out….. many people with mental illness are in fact, very sensitive empaths - this has all become clear to me in recent weeks because my sleep patterns have matched the astrological patterns so uncannily….
Make of this what you will but I know it’s related!
The path out of mental illness and into self-awakening
While I was away, I think I worked out exactly what you have to go through and understand, if you are going to defeat a serious bout of mental illness and start to self-actualise or ‘awaken’.
I’ve written it down to make it clear for myself first, and hopefully then it will help other people in the future too.
It goes something like this:
1. Identify that there’s a problem and be brave enough to confront it
2. Stop and sacrifice everything including independence, plus be the expert of self always
3. Block out the haters, critics and learn to ignore stigma and shame
4. Suffer relentless pain and suffering at the hands of brutal illness
5. Suffer relentless pain and suffering at the hands of the psychiatric drugs
6. Find activity to engage in to access present moment
7. Let go of the ego
8. Learn about the disorder and challenge own mind through extensive reading and education (bibliography)
9. Endure failures, side effects, iatrogenesis, and traumatic psychiatric hospitalisations
10. More and more brutal suffering as a result of having condition much worsened
11. Eventually find treatment and have thyroid properly medicated
12. Bankrupt self in process
13. Let go of all material thinking
14. Cut out all suppressants and stimulants including caffeine, nicotine, and alcohol
15. Realise profound change
16. Appreciation of simple pleasures
17. Regain interests slowly and surely
18. Work on massively depleted confidence issues
19. Reconcile with the past – easier said than done but essential!
20. Address holistic principles; physical, emotional, intellectual, and spiritual
21. Understand the ‘Wheel of Awakening’ and the anticlockwise rotation
22. Cut out the unhelpful people from my life
23. Forgive the unhelpful people in my life
24. Withdraw from poisonous and ineffective psychiatric drugs – this is a biggie unfortunately!
25. Start again from scratch as a new and improved person
26. Help everyone else!
27. Change location, change luck
28. Become fully independent
29. Continue to work on self-development, awakening and self-actualisation for life
30. Die happy!
THE END (or not?)...
This is not going to be easy, but I am now at about the 24/25 stage, and I’m determined to complete all of these steps to show people that it IS possible to defeat these hideous illnesses and make something good come out of something so catastrophically bad!
I was just starting to relax and get my sleep back on track when the four days of my holiday were over, and I realised that I really needed much more time away.
I found being by the coast very healing and it’s made me consider my next move – this chapter is nearly over and there has been far too much trauma in Oxfordshire / Buckinghamshire for me to want to stick around!
Ultimately this is going to involve leaving the country completely, but in the shorter term I think moving out of the Oxford area would probably be a good move!
I need somewhere quiet where I can continue to work on self-development and healing as well as write the other three books (two basically written already), that I realised I have in me while I was away!
In the meantime, while I take more time to adjust to being quetiapine free and focus on rest and recovery, there is a podcast that I recorded a few months ago to keep people going!
It was recorded with a show called ‘From Survivor to Thriver’ (quite apt for me), with two really great American guys called Erik DaRosa and Marc Fernandes. It’s quite an eye opener, and a fair few points were discussed in detail – let me know what you think!
I have added it to the podcasts page on this site, but you can also find it here.
I have now decided to only blog when it feels right for the next week or so - I think there will be one or two posts next week (when I know how I’m doing on the quetiapine sleep saga front), and then I start NLP on Monday the 6th, so in between I’ll be doing the pre-study for that and trying to get my brain in as good a shape as I possibly can!
Thanks for reading,
Speak to you soon,