Carmie: accidently doubling up on Seroquel one day while tapering

[Carmie]

Just documenting: This year so far I’ve been going down by 0.05mg  every five weeks or a little over five weeks. I’m not doing the 0.05mg drop all in one go, I’m actually doing it by 0.01mg every time, which adds up to the 0.05mg every five weeks or so. Some of the 0.01mg drops I hold a little longer than others, I’m just listening to my body. I’m going down by such a tiny percentage, that I’ll be tapering for many, many, many years still. Can’t go any faster, because I’ll get Akathisia again. 
 

Despite going this slow I still go through waves, but I also have a lot of windows. We can’t escape those dreaded waves. Our poor little brains trying ever so hard to reach some equilibrium. 
 

I’m only documenting every time I go down by 0.05mg, otherwise this year’s drug signature will be way too long. Last year I did the 0.05mg drops all in one go, and that hit me harder. Going down by 0.01mg is a lot easier on my brain. 
 

Last year I only went down by 0.25mg for the whole year. I wasn’t coping with my health issues ( unrelated to withdrawals), so I just couldn’t cope with too many waves on top of that as well. Still not coping with my health issues, but I want to get the tapering momentum happening again. One day at a time does it. I’ve had a bearable day today healthwise and withdrawal wise. What will tomorrow bring?
 

This year I’ve already gone from 3.20mg to 3.05mg. So I’m down 0.15 mg already. Yay! I’ll get to 3mg sometime at the beginning of next month. At the moment I’m at 3.03mg. 
 

Okay, all documented. Let’s see how I go for the rest of the year. 

[Catina7]

You are such an inspiration to us all @Carmie.  Your positive attitude is appreciated, and you even try to keep a sense of humor on top of it.  We are so grateful for you!  It's people like you that help the rest of us keep going and persevering.  Thank you for being the amazing YOU!

 

Love,

Catina ❤️

[Carmie]

You’re such a sweetie pie @Catina7, thank you for your generous words😘

 

My cognition has been really bad, such severe brain fog. Yesterday, I couldn’t even focus on a whodunnit on Britbox, or anything much for that matter. I kept rewinding a million times, and still couldn’t understand what was happening, who was who etc.

 

My brain is the same this morning. I don’t have the brain function to write a gratitude list. I don’t think I’ll be watching anything that requires me to focus. The brain fog is mainly from CFS, I’ve had it for three decades, but some days it’s worse than others. 
 

I am in fairly good spirits though, I just won’t be able to do things that require a brain🧠😂. The last two days I went for some lovely walks, I think I’ll get outside again today. There’s a cute little outdoor cafe not far from my place and before my walk yesterday I sat there and had a cup of tea and a snack. The arancini rice balls with a meat sauce are so delicious, and they use tea leaves for their tea, not teabags. Some places just stick a teabag into a pot. 
 

The hospital is going to ring me this morning as they want more info for my husband’s visit. They rang early and left a message. I didn’t answer as I didn’t know who was ringing. I only answer phone calls I know, and besides that, I couldn’t think to save my life. I called them back a bit later, and they were busy so will get back to me. Come on brain! I know you can deal with this phone call☎️🤪. I can always get them to ring the nurses where my husband lives. It’s called delegating😂😂. 
 

Hope you have a delightful day with your beautiful cats🐈🐈‍⬛🐈🐈‍⬛💛

[Carmie]

Well, it’s nearly 5 pm. I managed to survive the day so far with my severe brain fog. I really, really, really want to read the fourth novel in my series, but my brain won’t let me. I couldn’t watch any shows that needed concentration either. Guess what I just watched? Barbie😆. Can you feel the kenergy? 💪😜 Okay, now trying to figure out how to entertain myself for the evening. Let’s see what other fluffy thing I can watch. 
 

I went for another walk today and then sat in a park for a little while🌳🌳. 
 

My brain fog has been there for about thirty years due to CFS, but the addition of withdrawals would certainly be affecting it as well. 
 

Okay, now to find something else to watch that needs no brainpower📺🎞️

[Ariel]

Hello dear @Carmie

 

I can relate to the experience of brain fog making it impossible to follow the plot of a show or book! Sometimes it makes me laugh when I feel so disoriented I'm constantly like, who? what? Makes me feel like a character in a comedy sketch about Lady Who Doesn't Get It or something. 

You're so good at having a sense of humor about these things. I find that's the best way to go. Also when I'm so tired and my brain is so foggy, it's like I don't even have the energy to be grumpy or complain! My mind just completely surrenders and most everything becomes amusing and absurd. Silver lining I guess!

 

Good on you for managing a walk, posting here, making it through "Barbie" (which may require brain fog to watch!? lol) (although I do love Ryan Gosling, he really made the movie for me).

 

I'm very impressed with your commitment to tapering, you are a rock star! So brave and tenacious and patient. Thank you for documenting your process. You're doing an amazing job, truly. 

 

Sending you love (imagine the sound of a foghorn!) and healing vibes,

A. 

[Ariel]

10 hours ago, Carmie said:

Come on brain! I know you can deal with this phone call☎️🤪. I can always get them to ring the nurses where my husband lives. It’s called delegating😂😂. 

 

Thanks for making me laugh! 

[Carmie]

Dear @Ariel, thanks for popping over. I’m glad I made you laugh, you made me laugh too when you said that we need to be in a brain fog to watch Barbie😂. 
 

Well, I think it’s time for another gratitude list, so here goes: 

 

1. I’m kind of a bit numb again, really blah, but I caught up with my friends at the park🌳🌳🌳 around the corner, which was nice. It’s always nice to see a friendly face. One of my friends is going to Japan at the end of the year, and I’m very happy for her. 
 

2. I did manage to watch the whodunnit that I couldn’t get my head around the other day, and I actually understood the plot and the characters this time. When cognition 🤪is bad it’s hard to understand anything much. Yay 🎉for understanding the plot! I just watched another whodunnit and I got through it okay too. I still can’t read my novel 📖though, my brain won’t let me. I’m grateful I have a novel that I’m looking forward to reading when my brain does eventually let me again. 
 

3. The walk🚶🏻‍♀️ I took on Monday was delightful, I walked quite a way along the bike track. I’d never been that far. Time for exploration. I came across a footy club 🏈where teenagers were playing AFL. I’m not really a person who enjoys watching sports, though many years ago I used to like watching tennis🎾I wonder if I actually sat there for a while and watched an AFL game there I might like it? 
 

4. There were lots of really beautiful yellow flowers🌼🌼🌼 along the creek. They brightened my day. 
 

5. I just got some Uber🚙eats again. So handy. 
 

6. Not sure what I’m doing for the afternoon as I’m pretty numb🫤, but I might just chill to another whodunnit. I’m grateful there are distractions, no matter how we are feeling. 
 

7. I’ve got the heater🔥on, and my cat is contented sleeping in front of it. It’s cosy. 
 

8. I finally gave my friends the copies of my medical directive, I still have to give a copy to the doctor. I’m always happy to get administrative things done, because I’m not a fan of paperwork📄📄📄
 

9. I find knitting comforting🧶
 

10. Come on Carmie! You can do this! Think of a number 10🤔. The sun is out again☀️

 

Okay, well I got through that. I’m just so numb. Just a general blah feeling, I’m not sad and I’m not happy. I just am.
 

💛💛💛 

Edited May 22 by Carmie

[Carmie]

Okie dokie, time for a gratitude list. I haven’t done one in a little while, so it must be about time. Here goes: 

 

1. Recently I started playing an online📱word game again, Wordscape. That has kept me entertained for many hours ⏰the last couple of days. I was feeling really numb and just needed to pass the time. I got really involved and the hours just passed. Waves hit me the last couple of days too, though they’re not too bad today. It’s good to find distractions. I was in flow, and that’s exactly what one needs when in waves. 
 

2. I love doing crosswords too, though I buy crossword books📚. I’ve  never done them online. Maybe one day I’ll check them out though. I love word games.

 

3. Caught up with a couple of friends in the park on Friday, and we had a lovely time together🌳🌳🌳. Hoping to catch up with one of these friends again this week. 
 

4. Got groceries delivered today. Yay for home delivery🚗🚙
 

5. My husband’s dental surgery at the hospital went well today🦷🦷.

 

6. I haven’t been up to going for walks the last few days, as I haven’t had the strength. Maybe tomorrow. I’m grateful for walks, and looking forward to my next one. 
 

7. I dropped to 3.02mg on Friday. Another teeny tiny drop, but heading in the right direction⏩️. I’m only putting the drops in my signature every 0.05mg at the moment,  otherwise this year’s signature will be as long as my arm. It’s amazing how such a tiny drop can still affect us. I’m grateful for any drop though. 
 

8. A friend popped around a nice gift and a card, a colouring book with cats and dogs on it🐶🐈
 

9. Speaking of colouring books, I’ve been colouring a number of pages of country towns🖍️🖍️🖍️ Colouring in is a good distraction when you can’t focus on much. I don’t have the brain power today to do my word puzzles. I tried this morning, but my brain was in Lala land. 
 

10. I’m grateful for my heater on those cool mornings🔥🔥

 

💛💛💛

[LostInCanada]

8 hours ago, Carmie said:

Wordscape

Candy Crush and Phase 10 are my go to's at the moment. Such a blessing 

8 hours ago, Carmie said:

My husband’s dental surgery at the hospital went well today🦷🦷.

Happy to hear 

8 hours ago, Carmie said:

I’m only putting the drops in my signature every 0.05mg at the moment,  otherwise this year’s signature will be as long as my arm.

Good suggestion...I need to condense mine

8 hours ago, Carmie said:

Colouring in is a good distraction

I used to love it and doing puzzles. Since WD I can't look down at that angle without pressure, dizziness etc. Looking forward to doing it again one day. ❤️

 

Gratitude is so important. Thanks for sharing. 🤗

[Catwoman73]

I LOVE gratitude lists!  I do one in my personal journal, never thought about transferring it here!

 

I totally hear you on the brain fog... long covid has completely removed my mental sharpness.  I, too, test it by playing games and doing crosswords.  I think I've seen a small amount of improvement since I started reluctantly taking low dose naltrexone.  But I won't commit to that statement until the improvement is maintained for a while... My fave game at the moment is Twisted Tangle- where you untangle all the twisted up ropes.  It's quite challenging, but not on the level of chess or anything... I'm nowhere near ready for that.

 

I love your positivity, Carmie!  Keep being you- you're a ray of sunshine around here!

[Carmie]

Dear @LostInCanada and @Catwoman73 thanks for popping over to my neck of the woods🌳🌳🌳

 

I hope you’re having fun with your candy crush LostInCanada. I only really play word games on my iPad. Maybe I should widen out😁. 
 

I’m on LDN as well Catwoman, I have chronic fatigue syndrome, I’ve had it for three decades. My brain fog is from CFS. I was put on LDN last year though because now I have autoimmune issues as well, my immune system attacks my lungs. I saw that you are having trouble with allergies, I’m actually finding that the LDN might have helped with my allergies last year. It wasn’t until after allergy season that I thought I hardly had any this time. It might have been the LDN. Who knows? Let’s see how I go next allergy season. I hope you have fun with your Twisted Tangle game. 
 

Sending you both big hugs🤗🤗

[Catwoman73]

6 hours ago, Carmie said:

I’m on LDN as well Catwoman, I have chronic fatigue syndrome, I’ve had it for three decades. My brain fog is from CFS. I was put on LDN last year though because now I have autoimmune issues as well, my immune system attacks my lungs. I saw that you are having trouble with allergies, I’m actually finding that the LDN might have helped with my allergies last year. It wasn’t until after allergy season that I thought I hardly had any this time. It might have been the LDN. Who knows? Let’s see how I go next allergy season. I hope you have fun with your Twisted Tangle game. 

That's so interesting- I honestly think that I have had CFS for most of my adult life, but I've never been formally diagnosed.  Long covid just kicked me over the edge, so I couldn't work anymore, so that's the label I've been slapped with.  Prior to that, I had five separate leaves of absence from work over 25 years due to what my doctor labelled as stress/depression- I truly think I was just completely exhausted, and couldn't function anymore.   Have you found the LDN helpful for your brain fog?  And what dose are you at?  I think it might be helping my brain fog a bit, even at just 1.5mg.  I'm going to try to updose to 2.0mg in a month or so, as long as my next drop in escitalopram dose goes ok.  

 

Do you have a formal autoimmune diagnosis?  I have a friend with rheumatoid arthritis that has had some lung involvement.  Back in my working days, I certainly saw a lot of autoimmunity- I worked in intensive care, so I saw the worst of the worst.  Having autoimmune issues has to be scary in the context of withdrawal- the first thing they want to do typically is load you up with steroids... probably not desirable while tapering.  

 

Anyway, I'm off to take my daughter to school... I hope you're having a lovely day!  

[Carmie]

On 5/29/2024 at 9:50 PM, Catwoman73 said:

That's so interesting- I honestly think that I have had CFS for most of my adult life, but I've never been formally diagnosed.  Long covid just kicked me over the edge, so I couldn't work anymore, so that's the label I've been slapped with.  Prior to that, I had five separate leaves of absence from work over 25 years due to what my doctor labelled as stress/depression- I truly think I was just completely exhausted, and couldn't function anymore.   Have you found the LDN helpful for your brain fog?  And what dose are you at?  I think it might be helping my brain fog a bit, even at just 1.5mg.  I'm going to try to updose to 2.0mg in a month or so, as long as my next drop in escitalopram dose goes ok.  

 

Do you have a formal autoimmune diagnosis?  I have a friend with rheumatoid arthritis that has had some lung involvement.  Back in my working days, I certainly saw a lot of autoimmunity- I worked in intensive care, so I saw the worst of the worst.  Having autoimmune issues has to be scary in the context of withdrawal- the first thing they want to do typically is load you up with steroids... probably not desirable while tapering.  

 

Anyway, I'm off to take my daughter to school... I hope you're having a lovely day!  

Good morning from Australia, dear Catwoman, 

 

No, I haven’t found that the LDN has helped with brain fog. I’m on 1.5mg too. Wishing you all the best with updosing it. I started at 0.25mg and upped it by that amount every time, until I reached 1.50mg. When I tried to updose to 1.75mg I had a bad autoimmune reaction, I think it was too fast. If I ever decide to updose in the future, I think I need to updose slower.

 

Everyone is different as to how they react to it. There is an LDN group on Facebook. As regards allergies, some on there have said that they too had a reduction from seasonal allergies, while others said it didn’t help at all. We all react differently. I just thought it was weird that after allergy season I realised I hardly had any. I wasn’t even thinking about it during allergy season. I wonder if it was the LDN. The year before that the allergies were severe. Let’s see how I go this year. It’s winter tomorrow, so allergy season is still far away. 

 

I don’t have a formal autoimmune diagnosis as my immune system only attacks my lungs. Recently I’ve been in a flare for more than two years since the vaccine. I’m getting a bit of reprieve here and there now. I was struggling to breathe 24/7 for all that time. I injured my lungs many years ago, then around 2020 or so I started getting an autoimmune reaction. 
 

Sending hugs your way🤗

[Carmie]

Hi one and all,

 

Thanks for all you kind people who are interacting with me on here. It’s always much appreciated. 
 

I just wanted to let you know I’m having a break from this site for the month of June. I need to have a break from reading everyone’s sad stories every now and then. I need to take care of my physical and mental health as I’m chronically ill. 
 

Keep taking care of yourselves and make sure to find healthy distractions. 
 

Sending much love to everyone🤗🧡💛

[LostInCanada]

@Carmie ❤️🤗❤️

[Catina7]

Take good care of yourself @Carmie!  We'll miss you big time, but we all need to do what's best for our health.  We look forward to having you back again when you feel up to it.  💗

[Emonda]

9 hours ago, Carmie said:

I just wanted to let you know I’m having a break from this site for the month of June

 

Enjoy your break, Carmie. We will miss you.

 

I look forward to reading your next gratitude list on 1 July 😊

[Catwoman73]

Have a lovely break @Carmie!  You deserve it!  

[j1290]

On 5/30/2024 at 4:17 PM, Carmie said:

I need to have a break from reading everyone’s sad stories every now and then. I need to take care of my physical and mental health as I’m chronically ill. 

Absolutely get this, Carmie.   Thinking of you and hope you're doing well ❤️

[direstraits]

Take care, Carmie... thinking of you ❤️