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Sacredohana: Intro


sacredohana

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1 hour ago, sacredohana said:

trying to keep it all together for the kids.  Mine are teenagers and I am wracked with pain around what my situation is doing to them and not being able to be the parent I want to be, the parent I have been in the past. I worry about the long term damage to our relationships and to their future lives. They have both just given me their Christmas lists and I feel incapable of fulfilling them and creating a Christmas they would enjoy. And this fills me with such angst and sadness.

Everything you just wrote brings tears to my eyes as I feel the exact same way. If I didn’t have them then I really wouldn’t worry as much and it’s such a struggle trying to be the mother they know and now I feel like I may never be. My sons 10th birthday is in two weeks and I know he wants a party at home like I always do but just thinking of  how I’m going to do it and will I be okay that day is so hard . 

1995 started Paxil 20mg slowly increasing to 50mg until 2014

-2014 I decided to tapper myself not knowing how too and crashed , DR added 50mg Seraquel

-2015 tried tapering again and crashed

 

Started Tapering Both drugs at the same time 6% per month doing daily micro-taper 

Guided by Mark Horowitz

24/09/23  14.47mg Seroquel.  16.19mg Paxil 

27/11/23.  12.13mg. Seroquel.   13.85mg Paxil

 

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1 hour ago, sacredohana said:

Have you got a lot of work this week? Such strange times for us here in NSW & VIC. I am just about holding down my work. J

I run a  hairdressing bussiness in the city of Sydney and have had to work everyday the last 2 weeks. In one way it distracts me but in another I’m running on survival mode. I’m just hanging on to hope I will stabilise soon. 

1995 started Paxil 20mg slowly increasing to 50mg until 2014

-2014 I decided to tapper myself not knowing how too and crashed , DR added 50mg Seraquel

-2015 tried tapering again and crashed

 

Started Tapering Both drugs at the same time 6% per month doing daily micro-taper 

Guided by Mark Horowitz

24/09/23  14.47mg Seroquel.  16.19mg Paxil 

27/11/23.  12.13mg. Seroquel.   13.85mg Paxil

 

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1 hour ago, sacredohana said:

Michael Priebe went well. 

It went well but at the end of the day, it’s not gong to take away my problems , just nice being validated. 
Have you got a supportive family?

1995 started Paxil 20mg slowly increasing to 50mg until 2014

-2014 I decided to tapper myself not knowing how too and crashed , DR added 50mg Seraquel

-2015 tried tapering again and crashed

 

Started Tapering Both drugs at the same time 6% per month doing daily micro-taper 

Guided by Mark Horowitz

24/09/23  14.47mg Seroquel.  16.19mg Paxil 

27/11/23.  12.13mg. Seroquel.   13.85mg Paxil

 

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Just now, Cheeky said:

It went well but at the end of the day, it’s not gong to take away my problems , just nice being validated. 
Have you got a supportive family?

I’m here if you need support, we both have to get through this  and I’m happy to be here for you for encouragement. We both have beautiful kids and we will do it for them . 

1995 started Paxil 20mg slowly increasing to 50mg until 2014

-2014 I decided to tapper myself not knowing how too and crashed , DR added 50mg Seraquel

-2015 tried tapering again and crashed

 

Started Tapering Both drugs at the same time 6% per month doing daily micro-taper 

Guided by Mark Horowitz

24/09/23  14.47mg Seroquel.  16.19mg Paxil 

27/11/23.  12.13mg. Seroquel.   13.85mg Paxil

 

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@Cheekyits good to have someone to chat to who "gets it" so completely. I run my own business too. I left my employed work at the start of this year and set up my own real estate agency. I should be flying right now. I'm completely faking it and just about managing with the work that I do have but each time a potential new client comes along I have to think long and hard about whether I can commit to the job. It adds stress but also reduces it in terms of making ends meet.

I don't have any family here in Australia. I'm from the UK and all my family are over there. I am missing them all very much right now and having that support network. My dad is calling me everyday at the moment just to check in. I have a few friends who know whats going on.

I wish I was in Sydney so I could pop in for a cup of tea. Some advice that I have been given lately is to completely lower all expectations on myself. It's the idea that you "should" be capable of doing these things that creates the conflict. Easier said than done, I know.

I'm here for you too. I'm not in the position to offer much in the way of solutions but definitely in heart and spirit and courage.

1990 - 2004 citalopram 2010 lexapro 2016 DIY taper off lexapro 2016 Pristiq Oct 2020 - Jan 2021 DIY taper off Pristiq 100mg to 25mg Feb 2021 Pristiq 100mg + Seroquel 100mg March 2021 began taper of Pristiq to 0mg 06/21 June 2021 Seroquel taper 25mg at a time 4th Aug - 18th Aug 15mg of Mirtazapine - Came straight off. August 2021 50mg Seroquel

1st Oct 2021 - tried a reinstatement dose at 2mg of effexor became highly anxious. Will not continue.

21st Nov 2021 - 25mg XR Seroquel 
24th Dec 2021 switch to straight Quertiapine (not extended release)

01/01/22 - 22mg

Probiotic, Vit C, Zinc, Magnesium & Fish Oil

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29 minutes ago, sacredohana said:

wish I was in Sydney so I could pop in for a cup of tea.

That would be great , we could winge together  about our symptoms lol 

1995 started Paxil 20mg slowly increasing to 50mg until 2014

-2014 I decided to tapper myself not knowing how too and crashed , DR added 50mg Seraquel

-2015 tried tapering again and crashed

 

Started Tapering Both drugs at the same time 6% per month doing daily micro-taper 

Guided by Mark Horowitz

24/09/23  14.47mg Seroquel.  16.19mg Paxil 

27/11/23.  12.13mg. Seroquel.   13.85mg Paxil

 

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30 minutes ago, sacredohana said:

Some advice that I have been given lately is to completely lower all expectations on myself. It's the idea that you "should" be capable of doing these things that creates the conflict. Easier said than done, I know.

I’ve been told the same but I’ve always been so driven to succeed and this has made be a vulnerable baby. 
You probably know that running a bussiness you need to be on top of everything and this is so dam hard. 

1995 started Paxil 20mg slowly increasing to 50mg until 2014

-2014 I decided to tapper myself not knowing how too and crashed , DR added 50mg Seraquel

-2015 tried tapering again and crashed

 

Started Tapering Both drugs at the same time 6% per month doing daily micro-taper 

Guided by Mark Horowitz

24/09/23  14.47mg Seroquel.  16.19mg Paxil 

27/11/23.  12.13mg. Seroquel.   13.85mg Paxil

 

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33 minutes ago, sacredohana said:

I'm here for you too. I'm not in the position to offer much in the way of solutions but definitely in heart and spirit and courage.

Me too , I can be your cheerleader when you need one and someone you can cry too. I get what your going through and it’s so nice to meet you .

1995 started Paxil 20mg slowly increasing to 50mg until 2014

-2014 I decided to tapper myself not knowing how too and crashed , DR added 50mg Seraquel

-2015 tried tapering again and crashed

 

Started Tapering Both drugs at the same time 6% per month doing daily micro-taper 

Guided by Mark Horowitz

24/09/23  14.47mg Seroquel.  16.19mg Paxil 

27/11/23.  12.13mg. Seroquel.   13.85mg Paxil

 

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  • Moderator Emeritus
On 10/28/2021 at 11:55 AM, sacredohana said:

Dearest @Carmie

Thank you for stopping by and lending your support. Lockdown has been so hard in Melbourne. Not the easiest time to be in the depths of WD. Good to make a connection with someone else based in Australia and also withdrawing from Seroquel. I am super impressed at your patience and current low dosages and your support of others. I would love your help and advise when the time comes for me to recommence my tapering.

In the meanwhile, I wonder if you could share your experience of actually being on the drug. I did a too fast taper off Pristiq entirely and was on 100mg of Seroquel before my naturopath started me on another too fast taper to 50mg.  I am holding here as the WD from both and the anxiety of my current situation are just too much. The advise from SA has been to hold for 6 months with no additional drug changes.  How do you experience being on Seroquel? I sometimes wonder if the drug itself is causing some of my symptoms. I have a psychological dread of taking it each night. It seems to exacerbate symptoms sending lightening through my chest and down my arms and doesn't have any kind of calming affect. I will actually be feeling tired and ready to sleep before taking it and then I pop the pill and wham! pins and needles in my body and sleep is hard to drop into.  I feel that my body is rejecting the drug at the same time as needing it, does that make sense to you? I so don't want to be taking it at all and am worried about long-term effects the longer I take it. I was prescribed it off label for insomnia which was most likely due to a DIY taper of my antidepressant.  I know its super complicated and multi-layered but if you have time I'd love to hear your thoughts.

Hugs received and returned. 🤗🤗

Hi Ohana, 

 

Yes, I can imagine it’s been really hard in Melbourne. We’ve had it pretty good here in Queensland, only a few lockdowns. I have had to put myself into lockdown though a few times too, when there was community transmission, because of my lung problems. But for most of the time we’ve lived fairly normally, except for the mask wearing and social distancing. 
 

You were asking me about my experience on Seroquel, I’m really sick with CFS and barely functional a lot of the time, so I’m not sure Seroquel has added to that. The main problem I’ve had, and that happened with the other meds I was on too, was the severe Akathisia from withdrawals. That’s why I have to taper really slowly. It’s one of the most horrific things one can experience. Yes, feel free to let me know when you start tapering again.

 

I’m sorry your symptoms get worse straight after you take it, maybe when you get to the lower doses that might not be as bad. I used to get a buzzing throughout my body after taking it, but I haven’t had that in a while. It wasn’t anything major. It’s more the withdrawing off it that affects me badly. 
 

I don’t work, I’m on a disability pension because of my health problems. I’m sorry you’re struggling with work, it must be hard working while going through withdrawals.

 

I agree with SA here, I would be holding for as long as it takes to stabilise again. Making lots of changes can just make things worse. I’ve had extremely long holds so I could stabilise before I started to taper again, and as I mentioned, I’m tapering so slow now as I don’t want to get the severe Akathisia again. Even tapering at the amount I’m tapering I still get waves, you can’t stop them in this journey. 
 

We just have to learn coping skills and have a lot of patience. My motto has always been: “ Distract! Distract! Distract! 
 

I hope you’re coping okay today🧡

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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  • 4 weeks later...
  • Moderator Emeritus

Hi Ohana, 

 

How are you doing?🧡

Been on APs, benzos, ADs and opiates, for chronic pain. Had Akathisia in the past that made me suicidal. Still on Seroquel. 2019:➡️ March10=7.25mg ✔️ April17=7.0✔️ June5=6.75✔️ July14=6.50✔️ Aug28=6.25✔️ Oct10=6.20  ✔️ Oct21=6.0✔️ Dec16=5.80 ✔️ 2020➡️ Jan 21=5.60 ✔️ April2=5.40 ✔️ May29=5.20 ✔️ Aug14= 5.0 ✔️Sep29=4.80✔️2021➡️ Jan31=4.60 mg✔️ April24=4.40mg✔️Jul17=4.30mg ✔️ Aug 28=4.20 ✔️ Oct 11=4.15✔️Nov1=4.10 ✔️ Nov21= 4.05✔️ Dec13= 4mg ✔️2022 ➡️ Jan8=3.95✔️ Jan31=3.90✔️ March2=3.85 ✔️ April4=3.80 ✔️ June16=3.75✔️ July26=3.70✔️ Sep2=3.65✔️ Oct21=3.60 ✔️ Dec8=3.55✔️2023➡️ Jan 26=3.50✔️ March 17=3.45✔️ June12=3.40✔️ July30=3.35✔️ Sep14=3.30✔️ Oct31=3.25✔️This is NOT medical advice.Consult your doctor.

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  • 2 weeks later...

Hi @Carmiethanks for checking in and sorry it's taken me so long to respond. In a way things have settled down for me. I am not in "crisis" at the moment. I have actually managed to reduce from 50mg to 25mg of seroquel without too much trouble and even the 25mg I am shaving a subtle amount from each night. I do get tingles down my arms and a racing heart and pulse that I feel in my neck just after I take the dose at night.

So while I am not in major crisis I am still just getting by. Life is very far from being liveable. My motivation is at ground level, I can hardly get myself up most mornings, I take no pleasure in anything. My confidence is gone. I can just about scrape a few words together if I need to communicate. Luckily I can pull it together for the few work related things I have to do but the rest of the time I am on the sofa either watching tv or reading to distract myself from my sadness. I have zero personality. I cry most days at what I have become. I have been seeing a therapist who is helping me try to break through this existential despair I have. She is helping to heal the child in me and to love myself again. But I can't feel love. The emotion just isn't there. Is this the Seroquel or the withdrawal or is this my natural state of being?

I feel the way I have felt in the past when I have ended up back on antidepressants again.  I wonder if this is who I am without the drugs.  It's hard to keep to the plan of healing from the withdrawal when I don't know if things will improve to a tolerable level. For me I need to be able to feel love and joy and to laugh again. 

I worry about my kids and what this is doing to them. It feels irresponsible and dangerously self-indulgent to be putting myself through this process when I could just go back on ADs for the sake of my kids. They don't deserve this.

And then when I consider going back on ADs I feel like such a failure and I remember something Altrostrata said about not being ready to "unpatient" myself and I feel ashamed. I beat myself up about not being able to "get it" - to find transcendence, acceptance and peace in this world.

My patience is wearing thin.

How are you? I hope you are managing your CFS. Sending hugs.

1990 - 2004 citalopram 2010 lexapro 2016 DIY taper off lexapro 2016 Pristiq Oct 2020 - Jan 2021 DIY taper off Pristiq 100mg to 25mg Feb 2021 Pristiq 100mg + Seroquel 100mg March 2021 began taper of Pristiq to 0mg 06/21 June 2021 Seroquel taper 25mg at a time 4th Aug - 18th Aug 15mg of Mirtazapine - Came straight off. August 2021 50mg Seroquel

1st Oct 2021 - tried a reinstatement dose at 2mg of effexor became highly anxious. Will not continue.

21st Nov 2021 - 25mg XR Seroquel 
24th Dec 2021 switch to straight Quertiapine (not extended release)

01/01/22 - 22mg

Probiotic, Vit C, Zinc, Magnesium & Fish Oil

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  • 2 weeks later...

How are you doing @sacredohana?

I see you have gone from 50 mg Seroquel to 25 mg quite quickly and your last post describes you not being in great shape. I am so sorry for that.

I have no other authority to back me up except the advice on this board - that drop could have been too steep. And I don't know what would be better now - to reinstate a bit or try to ride it out.

Hope somebody will offer you some advice, it's horrible what these drugs are doing to people.

Hold tight @sacredohana. Best wishes!

October 2019 - March 2020 - Trazadone 150 mg

October 2019 - March 2020 - Halcion (triazolamum) 0.25 mg - for sleep

October 2019 - March 2020 - Neurontin (gabapentinum) 300  mg

October 2019 - March 2020 - Lamictal ??

October 2019 - March 2021 - Fluanxol 1 mg

June 2020 - April 2021 - escitalopram 10 mg

March 2020 - April 2021 - Lorafen (lorazepam) 2.5 mg

29.11.2021 - quit coffee CT.

March 2020 - 100 mg Quetiapine, 16.06.2021 90 mg, 16.07.2021 85.5 mg, 13.08.2021 77.5 mg, 10.09.2021 69.3 mg, 08.10.2021 65.8 mg, 29.10.2021 62.5 mg, 13.11.2021 59.4 mg, 06.12.2021

57.9 mg, 13.12.2021 56.5 mg, 20.12.2021 55.0 mg, 27.12.2021 53.5 mg, 03.01.2022 52.1 mg, 10.01.2022 50.8 mg, 17.01.2022 49.5 mg, 24.01.2022 48.3 mg, 31.01.2022 47.1 mg, 07.02.2022 45.5 mg, 14.02.2022 44.0 mg, 21.02.2022 42.9 mg, 28.02.2022 41.5 mg, 07.03.2022 40.0 mg, 14.03.2022 39.0 mg, 21.03.2022 37.0 mg, 04.04.2022 33.3 mg, 25.04.2022 30.0 mg, 15.05.2022 27.0 mg, 03.06.2022 24.3 mg, 24.06.2022 22.0 mg, 13.07.2022 19.8 mg, 01.08.2022 17.0 mg, 15.08.2022 15.3 mg, 01.09.2022 13.8 mg, 15.09.2022 11.5 mg, 01.10.2022 10.0 mg, 15.10.2022 8.0 mg, 01.11.2022 7.0 mg, 22.11.2022 5.5 mg, 11.12.2022 4.0 mg, 16.12.2022 0 mg !

 

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  • 2 weeks later...

@EveningMuffin so spot on, thank you for the nudge. I’m so impatient and hadn’t really worked out how to reduce small amounts accurately. I’ve been cutting 50mg XR into two but it’s way off being a precise 25mg each time. I want so badly to get this drug out of my system as I believe that my cognition and happy hormone levels are badly effected. I want this layer of numbness gone from my heart. I want to feel love again. Yes the drop from 50 - 25 was too quick and I’m sure is responsible for my unstableness.

Another component that knocked my sleep out of whack temporarily was taking a B12 supplement. (My levels are low). As soon as I started taking it my ability to fall asleep and sleep depth were affected. I had read about Vit B supplementation being too activating when in withdrawal so I was able to recognise that as the culprit. I’ve decided to try and increase my levels through diet instead. Lots of red meat and sardines for me.

Excitingly, I have found a psychiatrist here in Melbourne who will support the final stage of my tapering journey by prescribing Quertiapine in 10mg, 5mg and 1mg caps so that I can reduce incrementally.
I am going to try a reduction of 1mg every 5 - 7 days and then as I get lower I can split open the caps and cut the powder to reduce by even smaller amounts if necessary. I was nervous to make the switch from extended release to straight Quertiapine however my fears were groundless. If anything just swapping from 25mg XR to 25mg has improved my clarity of mind during the day.
Since my last post my mood has levelled off and increasingly my days are brighter and lighter. And my sleep is pretty good. I even had a day last week when I felt relatively normal with a level of motivation I have not felt for a while. The following day was hard as the good feelings evaporated and my hopes of a more sustained normality dashed but overall if I step back I can see improvement over time. I believe the withdrawal symptoms from the too quick taper of Pristiq have abated and the reduction of Quertiapine in

my system is improving my cognition and thereby my satisfaction with myself.
Thank you for your support @EveningMuffin Hope your are continuing with your steady progress. Here’s to slow reductions and healing in 2022.

1990 - 2004 citalopram 2010 lexapro 2016 DIY taper off lexapro 2016 Pristiq Oct 2020 - Jan 2021 DIY taper off Pristiq 100mg to 25mg Feb 2021 Pristiq 100mg + Seroquel 100mg March 2021 began taper of Pristiq to 0mg 06/21 June 2021 Seroquel taper 25mg at a time 4th Aug - 18th Aug 15mg of Mirtazapine - Came straight off. August 2021 50mg Seroquel

1st Oct 2021 - tried a reinstatement dose at 2mg of effexor became highly anxious. Will not continue.

21st Nov 2021 - 25mg XR Seroquel 
24th Dec 2021 switch to straight Quertiapine (not extended release)

01/01/22 - 22mg

Probiotic, Vit C, Zinc, Magnesium & Fish Oil

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@sacredohana - glad you are going good now. Yes, I can understand the impatience to get this drug out of the system and it's great you survived the big drop so well.

Also, great for having the possibility for different quetiapine doses. It's not possible in my case so I'm cutting the pills, shaving with a file and weighing with a microscale. I'm sticking to 2.5% drop every 7 days aiming at 10% monthly as suggested on this board. It will take while but I want to avoid a risk of running into WD symptoms even if that means being on the drug longer.

So good luck to you reducing and healing in 2022.

Best wishes and thanks for the support!

October 2019 - March 2020 - Trazadone 150 mg

October 2019 - March 2020 - Halcion (triazolamum) 0.25 mg - for sleep

October 2019 - March 2020 - Neurontin (gabapentinum) 300  mg

October 2019 - March 2020 - Lamictal ??

October 2019 - March 2021 - Fluanxol 1 mg

June 2020 - April 2021 - escitalopram 10 mg

March 2020 - April 2021 - Lorafen (lorazepam) 2.5 mg

29.11.2021 - quit coffee CT.

March 2020 - 100 mg Quetiapine, 16.06.2021 90 mg, 16.07.2021 85.5 mg, 13.08.2021 77.5 mg, 10.09.2021 69.3 mg, 08.10.2021 65.8 mg, 29.10.2021 62.5 mg, 13.11.2021 59.4 mg, 06.12.2021

57.9 mg, 13.12.2021 56.5 mg, 20.12.2021 55.0 mg, 27.12.2021 53.5 mg, 03.01.2022 52.1 mg, 10.01.2022 50.8 mg, 17.01.2022 49.5 mg, 24.01.2022 48.3 mg, 31.01.2022 47.1 mg, 07.02.2022 45.5 mg, 14.02.2022 44.0 mg, 21.02.2022 42.9 mg, 28.02.2022 41.5 mg, 07.03.2022 40.0 mg, 14.03.2022 39.0 mg, 21.03.2022 37.0 mg, 04.04.2022 33.3 mg, 25.04.2022 30.0 mg, 15.05.2022 27.0 mg, 03.06.2022 24.3 mg, 24.06.2022 22.0 mg, 13.07.2022 19.8 mg, 01.08.2022 17.0 mg, 15.08.2022 15.3 mg, 01.09.2022 13.8 mg, 15.09.2022 11.5 mg, 01.10.2022 10.0 mg, 15.10.2022 8.0 mg, 01.11.2022 7.0 mg, 22.11.2022 5.5 mg, 11.12.2022 4.0 mg, 16.12.2022 0 mg !

 

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