Carmie: accidently doubling up on Seroquel one day while tapering

[Carmie]

On 6/13/2018 at 12:47 PM, Rabe said:

Hi Carmie...I read quite a bit on histamine a while back...but of course can't remember much of it except that it can cause issues.   Good luck with it. Would be interested to know how things go with it! ♥️

 

 

Still too foggy in the brain to do a lot of research but I have been looking at low histamine foods. Some of the lists differ. One list says a certain thing is okay and another says something different. 🙄

 

I will get there and somehow figure it out. Deciding whether to buy the book Is Food Making You Sick? by James.L.Gibb. It’s a low histamine diet and it’s a best seller. 

 

My face is still really itchy and other parts of my body are a little bit itchy here n there, nothing major. I was reading something about histamine causing tinnitus too. A lot of people on this site have tinnitus.

 

Hope you’re doing okay Rabe💚

 

 

[Rosetta]

Someone here is eating a low histamine diet.  I don't remember who.  It's a woman.  She thinks it works for her.  You probably know this, but you can type survivingantidepressants and histamine into a search engine such as Google and you will get a list of SA pages that include the word histamine.

[Carmie]

12 hours ago, Rosetta said:

Someone here is eating a low histamine diet.  I don't remember who.  It's a woman.  She thinks it works for her.  You probably know this, but you can type survivingantidepressants and histamine into a search engine such as Google and you will get a list of SA pages that include the word histamine.

 

Thanks Rosetta, 

 

Yes,I had read a little about histamine intolerance on this site by googling it the other day. Just read a bit more. Someone else was saying an antihistamine diet is confusing as one person’s list of what you can n can’t eat is different from another person’s list. There are things you definitely shouldn’t have like fermented products, citrus fruits etc that everyone agrees on but there are certain foods different people don’t agree on. 

 

I was drinking lots lots of lemon water. Not a good idea.

 

I guess it’s all trial and error. We are all so different and what we tolerate one minute we can no longer tolerate the next.

 

Seroquel is supposed to be an antihistamine in low doses but my face is so itchy. I wonder if it’s a paradoxal effect or the itching is from something completely different? Who knows, so many of our symptoms are a mystery. 

 

I’ve been lying on the couch almost all day watching Netflix and crocheting. I get up every now and again to do some housework. Don’t have much energy and I’m trying to conserve it for a concert tonight. 

 

Sending hugs to you🤗🤗

 

 

[Carmie]

It’s 11pm now, I’m off to bed in a sec. Just went to a concert of one of my favourite 80’s bands. Have seen them before. I’m in a window n I’m doing my best to make happy memories so that when I taper again n get hit by the massive waves I have fun things to look back on.

 

Even in windows I still have symptoms but they aren’t too intense. I have a chronic illness too which limits what I can do. 

 

I really believe that when we are in windows we need to do fun things because it gives us something happy to look back on.

 

Please keep making memories everyone💚💚

[Songbird]

On 6/15/2018 at 3:55 PM, Carmie said:

Seroquel is supposed to be an antihistamine in low doses but my face is so itchy. I wonder if it’s a paradoxal effect or the itching is from something completely different?

 

When you are taping a drug, you are getting less of the effect.  Less anti-histamine -> more histamine -> more itching.

[Carmie]

46 minutes ago, Songbird said:

 

When you are taping a drug, you are getting less of the effect.  Less anti-histamine -> more histamine -> more itching.

 

Thanks Songbird, 

 

I kept reading that low doses of Seroquel are an antihistamine. I guess maybe that meant the lowest tablet of 25mg. I’m on 7.5mg now so maybe it’s not working as an antihistamine as much. I never had itching before being on these meds so I’m guessing I’ll get rebound itchiness from tapering it?

 

How are you doing? Hope you’re coping okay💚

 

 

[Songbird]

2 hours ago, Carmie said:

I kept reading that low doses of Seroquel are an antihistamine.

 

 

I think what this means is that at low doses it mainly hits the histamine receptors.  It doesn't affect the other receptors (serotonin, dopamine, alpha-adrenergic) until higher doses.  This means that at lowish doses it works mainly as a sedating anti-histamine, not an anti-psychotic, which is why it is prescribed off-label for sleep and anxiety.

 

I'm doing okay, Carmie, just holding at current dose for a while.  I hope you really enjoyed the concert.

[xyz]

hi Carmie,

i have never been on seroquel, but i was on mirtzapine and i had incredible itching when i got off it. whatever you feel, remember that it is not permanent.

how long will it last? nobody knows, but i bet your symptoms will ease up in a couple of months. they are manifestation that your CNS is healing, so just take it as they come.

you are right about building good memories when we feel good. i like to laugh a lot and make joke, so when i feel bad it helps to remember those silly moments.

sending you hugs and healing.

xoxoxo

[Carmie]

18 hours ago, Songbird said:

 

I think what this means is that at low doses it mainly hits the histamine receptors.  It doesn't affect the other receptors (serotonin, dopamine, alpha-adrenergic) until higher doses.  This means that at lowish doses it works mainly as a sedating anti-histamine, not an anti-psychotic, which is why it is prescribed off-label for sleep and anxiety.

 

I'm doing okay, Carmie, just holding at current dose for a while.  I hope you really enjoyed the concert.

 

Hi Songbird, 

 

Thanks for that. I gather though, the lower I go the less antihistamine affect it has, as you said. 

 

I’m glad you’re doing okay and holding. I’m holding too. In bed today, CFS is bad. Hardly any strength at all, but am keeping myself occupied. I’m watchng DVDs, crocheting a pink blanket for a friend, and I’ve ordered a few things off eBay. I don’t like owning lots of stuff but I love my music and DVDs and I order things for get togethers and lunches etc. I like to make everything fun and special when I have people around. 

 

When I’m too ill to do much I plan instead, decorations, what music to play etc etc. It keeps me entertained.😀 Last week I entertained my friends at lunch by playing ABBA music clips, I always decorate the table. We played air hockey, cards and other games. I can’t sing to save my life but it doesn’t stop me.😜 

 

The week before with other friends we were all dancing, we did the nutbush, the Macarena, the chicken dance etc etc. was a hoot!  I always think of the kind of things people like and then work around that. I love party planning, whether it’s a big group or just a few people for lunch. Doing smaller groups is easier when I’m not well. I planned a big party at a friend’s place a while ago, but it takes a lot of work. I’m sticking to smaller gatherings at the moment. 

 

I think its so important still to plan things when you’re not doing so well so you have things to look forward to. Whether it’s a holiday, a craft you want to do, places you want to go etc etc. Chronic illness and withdrawals makes life hard and you can’t always do what you want to do when you want to do it, but you can make some fun planning.

 

Yes, I did enjoy my concert. It’s really happy, upbeat music. Mental As Anything have been playing for nearly forty years. The only original band member now is Greedy Smith, one of the singers. He’s older than me and has so much energy. He looks like he has a ball when he’s on stage. Fun to watch and listen too, he still sounds the same as he did forty years ago.

 

Enjoy your hold and I hope you’re having some fun times too so that when the waves hit you will have fond memories 💚

18 hours ago, xyz said:

hi Carmie,

i have never been on seroquel, but i was on mirtzapine and i had incredible itching when i got off it. whatever you feel, remember that it is not permanent.

how long will it last? nobody knows, but i bet your symptoms will ease up in a couple of months. they are manifestation that your CNS is healing, so just take it as they come.

you are right about building good memories when we feel good. i like to laugh a lot and make joke, so when i feel bad it helps to remember those silly moments.

sending you hugs and healing.

xoxoxo

 

Hi xyz, 

 

It was good to hear you’re doing well. Yes, symptoms aren’t permanent, that is always a good thing to remember. They come and go, and one of these days they will be gone completely. Yay!

 

CNS healing sounds good. One day at a time. Some days I’m really itchy, and other days not so bad. I tend to live a day at a time.

 

Im glad you’re laughing a lot and making jokes, keep making those memories. I do a lot of laughing at myself. When brain fog is severe I don’t know what I’m doing half the time. I struggle with my memory too and people ask me things and I can’t remember at all. It’s bad sometimes. I’m ALWAYS losing things. I don’t stress about it though, I have to laugh because otherwise I’d cry. 

 

Im continually going into a room and haven’t got a clue why I went in there, or I’m thinking I’ve got to check that up on google, and soon afterwards I’ve forgotten already. I think a notepad n pen are a good idea. Carry them around and then when ideas come into our minds we can jot them down. 

 

Keep me updated on how your taoering continues to go.

 

Sending hugs🤗

 

 

[Rabe]

Hi Carmie...so glad you are planning more fun for your hold time!  I don't plan ... just go day at time which isn't as much fun .... just can't commit to anything right now.  DOnt like it but just is.  Feel like constantly fall short...is what is.  I smiled when reading your post...I used to be more that way.  I too have had CFS for years...and I would just do other things when not able to do my usual..just as you are.   At least i knew that would eventually get some better.  Guess its a bit like WD...better, worse, better, worse.  Wish you happy planning, happy music, and sweet dreams!! 💜

[Carmie]

It’s nearly bedtime but I just want to say I’m actually having fun watching Mental As Anything videos this evening, 

 

When I’m in waves I’m just in survival mode and trying to do the best I can to get through the day. I have lots of coping strategies.

 

Im actually feeling joy tonight. A lot of the time I’m anhedonic. It’s not just withdrawals, it’s CFS as well. I can’t stop smiling tonight. I enjoyed their concert so much this week. It’s great to be in a window even though I’m really sick and also still have withdrawal symptoms, but not quite as intense.

 

It’s nice to feel truly happy, again, I can’t stop smiling. I really hope that each and every one of you still have things that make u smile. 

 

It’s a day at a time, and a lot of days I’m just in survival mode.

 

Hang in there everyone💚😍

4 hours ago, Rabe said:

Hi Carmie...so glad you are planning more fun for your hold time!  I don't plan ... just go day at time which isn't as much fun .... just can't commit to anything right now.  DOnt like it but just is.  Feel like constantly fall short...is what is.  I smiled when reading your post...I used to be more that way.  I too have had CFS for years...and I would just do other things when not able to do my usual..just as you are.   At least i knew that would eventually get some better.  Guess its a bit like WD...better, worse, better, worse.  Wish you happy planning, happy music, and sweet dreams!! 💜

 

Hi Rabe, 

 

thanks for dropping by, it really is much appreciated,

 

I really appreciate all your happy wishes for me, it means the world to me. Yes, I love planning fun things and I looooove music. Go to a million concerts.

 

I know what it feels feels like to feel like you’re always falling short, but I tell you what, once you get into a certain rhythm things start to flow. I’m really sick with CFS, as you are too, but having people over for meals brightens my day. I make curries the day before, so all I have to do is boil some rice on the day. I’m finding that manageable. My oven is broken at the moment so I can’t bake anything, I just buy things from the supermarket for dessert. 

 

CFS is also an CNS illness. Please check out Dan Neuffer, he explains it extremely well. We really don’t have any chance of getting over CFS until our nervous system calms down and don’t won’t happen until we are off these dreaded meds. So sad, but there’s not much we can do. 

 

All we we can do Rabe is take a day at a time and try and find the blessings in our day, no matter how small.

 

Sending u the biggest hug ever🤗

 

[DMV64]

1 hour ago, Carmie said:

All we we can do Rabe is take a day at a time and try and find the blessings in our day, no matter how small.

I really needed to hear this today Carmie. Thank you. It is hard not to focus on all I can't do! It's great you enjoy people. I am having some isolation right now, so I hope that lifts.

[Carmie]

19 hours ago, DMV64 said:

I really needed to hear this today Carmie. Thank you. It is hard not to focus on all I can't do! It's great you enjoy people. I am having some isolation right now, so I hope that lifts.

 

Hi DMV, 

 

Hope you’re coping okay today. Yes, we should look at what we are still able to do and not worry too much about what we can’t do. One of my favourite quotes is CONSISTENCY OVER INTENSITY. The small things we do daily add up, no matter what it is, reading a book, doing a craft, doing housework etc. If we try to do things too intensely we get overwhelmed and then we do nothing at all.

 

Little and often is the key. I’ve found setting a timer with certain things is a great method. For example, if you want to declutter your place ( I’m a big declutterer😀Hate having too much stuff) set the clock for ten minutes or so a day and start getting rid of stuff. Throw out what is rubbish and give away the things that you don’t use. 

 

I find that one copes better and is not so overwhelmed when you don’t have as much clutter, very important when you’re sick or in waves. It ends up making housework a lot easier too. Less stuff, less to organise, less to clean.

 

So you’re having some isolation now. I love being with my friends but I love time on my own. I’ve been blessed with a really creative mind and I always find fun things I can do. I love creating. I’m never bored. Even when I’m stuck in bed I find things I can still do, even if I can’t think I can still crochet the same stitch over and over.  It makes for lots of presents to give to my friends too, which in itself makes me extremely happy. 

 

Sending hugs Hazel🤗

 

 

Had to edit. Autocorrect wrote pressures instead of presents. I certainly don’t want to give my friends pressures😂😂😂

[Carmie]

Hi one and all, 

 

How are we all faring today? One day at a time does it, hey? 

 

My brainfog has been severe and I’m struggling to read but I’m still trying to look at all the positives in my day. I love reading, could read novels for hours. It really is the best escapism, you know when they say someone is in flow, when I’m into a novel I really am in my own little world. My favourite author is John Grisham, that man can write! The last novel I started was Middlemarch, that’s quite a long novel. 

 

Listening to novels is a good idea too if you can’t concentrate on reading, I started to listen to a bit more of Middlemarch. YouTube has lots of books you can listen to.

 

If you can find something that can get into the flow while going through withdrawals it really is the best thing. It’s that feeling where you are so involved in something that time flies really quickly as you can’t seem to stop.  It doesn’t matter if you’re anhedonic at the time, it’s just something that has your attention and distracts you. I’ve also spent many, many hours playing Words With Friends on my iPad just to survive through a really severe withdrawal day. 

 

I’ve spent whole days photoshopping and editing photos when withdrawals have been severe and it helped me get through the day. Major photoholic here, I was one way before the digital age. 

 

 Still spent most of the day in bed (CFS) but I’ve almost finished crocheting a blanket for a friend and will give it to her tonight. Am catching up with friends tonight which I’m looking forward to.

 

Anyway, gotta go, have trouble focusing. 

 

Wishing everyine the best best in their withdrawal journey💚💚

 

 

[xyz]

hi Carmie,

your posts are always full of love and positivity! and i love them!

i am doing swell. dealing with insomnia at time but not too bad.

 

are you still itching? i just realized that i itch at times too due to the benzo taper.

and this is what i have been using and it works really well. don't know if you can find it where you live.

https://www.amazon.com/Sarna-Original-Anti-Itch-Lotion-Sunburn/dp/B002DUDEOY/ref=sr_1_5_a_it?ie=UTF8&qid=1529477621&sr=8-5&keywords=sarna+lotion

 

i have house projects that i would like to get done, and i am doing my nails tonight, i want to try the dipping powder. i am a fan of sterling silver/cubic zirconia rings and love to look at my hands. 

i can spend hours on poshmark to look at rings with blings!

you are right, distraction is key during withdrawal!

 

[Survivor1]

10 hours ago, Carmie said:

I love reading, could read novels for hours.

 

I agree!  It is one of the few pleasures I have been able to enjoy while in WD, although the past month I have not been able to do so for brain fog/lack of focus reasons.  Seems you like thrillers; try the Millennium series by Steig Larsson/David Lagerkrantz.  I'm on the latest book and it is riveting, like the others.

 

I admire how positive you are despite having CFS.  I have an acquaintance who is almost debilitated by it, so I know what a toll it can take on the body.

 

Keep on carrying on!  Best wishes.

 

 

[Carmie]

On 6/20/2018 at 5:00 PM, xyz said:

hi Carmie,

your posts are always full of love and positivity! and i love them!

i am doing swell. dealing with insomnia at time but not too bad.

 

are you still itching? i just realized that i itch at times too due to the benzo taper.

and this is what i have been using and it works really well. don't know if you can find it where you live.

https://www.amazon.com/Sarna-Original-Anti-Itch-Lotion-Sunburn/dp/B002DUDEOY/ref=sr_1_5_a_it?ie=UTF8&qid=1529477621&sr=8-5&keywords=sarna+lotion

 

i have house projects that i would like to get done, and i am doing my nails tonight, i want to try the dipping powder. i am a fan of sterling silver/cubic zirconia rings and love to look at my hands. 

i can spend hours on poshmark to look at rings with blings!

you are right, distraction is key during withdrawal!

 

 

Thank you for your kind words xyz, 

 

That was very sweet. I’m positive by nature, but when in severe waves I struggle like everyone else to keep my head above water, but I just keep distracting myself. I really don’t understand the concept of boredom. My brain always thinks of millions of things I can do to distract myself.

 

I’m glad you have projects to do too. Your nails must look amazing. I have a friend who gets her nails done in all these amazing designs. I’m partial to silver too, not a gold girl. Glad you can spend hours on poshmark. I’ve never heard of it, so I checked it out. I’m not a big shopper, I’m more a nature girl, I’m a bit of a minimalist. The most important thing in withdrawals though is to keep doing things to distract yourself. Things that get you in flow and make the hours fly by. 

 

I have lots of friends too, and it really breaks my heart to see people on here that don’t have much of a support system. It’s so sad😢. I was outdoors this morning with friends, saw the most beautiful flowers. Looking at nature and seeing the bigger picture really helps through withdrawals too. Having friends that care about you helps too. 

 

I had friends over for lunch. One little two year old was so adorable, she kept holding my hand and hugging me,  I think we’re friends for life now😂.

 

Thank you for the info about the itch cream. I’m not too bad at the moment but it might come in handy in the future. I’m sure other people on this site will find it beneficial too. 

 

Glad you’re doing swell, keep me posted on your taper. 

 

I’m in a window but brain fog is severe due to CFS and I haven’t been able to read much. 

 

Sending you big hugs and I hope your taper keeps going well 💚💚

 

On 6/21/2018 at 1:31 AM, Survivor1 said:

 

I agree!  It is one of the few pleasures I have been able to enjoy while in WD, although the past month I have not been able to do so for brain fog/lack of focus reasons.  Seems you like thrillers; try the Millennium series by Steig Larsson/David Lagerkrantz.  I'm on the latest book and it is riveting, like the others.

 

I admire how positive you are despite having CFS.  I have an acquaintance who is almost debilitated by it, so I know what a toll it can take on the body.

 

Keep on carrying on!  Best wishes.

 

 

 

Hi Survivor, 

 

Thanks for dropping by, 

 

I know what you mean about the brain fog, mine has been pretty bad lately and I can’t read much, listening to novels is always  always an option. 

 

Can’t wait until I can read a novel again. Thanks for the recommendation. I actually like novels with court cases and lawyers and John Grisham really does them superbly. I don’t really like gorey thrillers. I love the old classics too like Jane Austen, Charles Dickens etc. I reckon when one’s brain fog isn’t too bad it’s a great idea to read novels and escape in them. A good distraction from withdrawals.

 

I’m sorry your aquaintance has CFS as well, it’s a really disabilitating illness. I spend lots of time in bed, but I’ve learnt how to stay on a baseline so that I’m able to still go out and do things. It’s a CNS illness too. CFS causes massive brain fog, I have felt for over twenty years that everything around me is surreal. 

 

I’m struggling to read at the moment but when I’m able to I’ll check out your thread again. Thank u so much for thinking of me. 

 

Sending hugs🤗

 

 

 

 

 

 

 

[dj2010]

2 hours ago, Carmie said:

 

Thank you for your kind words xyz, 

 

That was very sweet. I’m positive by nature, but when in severe waves I struggle like everyone else to keep my head above water, but I just keep distracting myself. I really don’t understand the concept of boredom. My brain always thinks of millions of things I can do to distract myself.

 

I’m glad you have projects to do too. Your nails must look amazing. I have a friend who gets her nails done in all these amazing designs. I’m partial to silver too, not a gold girl. Glad you can spend hours on poshmark. I’ve never heard of it, so I checked it out. I’m not a big shopper, I’m more a nature girl, I’m a bit of a minimalist. The most important thing in withdrawals though is to keep doing things to distract yourself. Things that get you in flow and make the hours fly by. 

 

I have lots of friends too, and it really breaks my heart to see people on here that don’t have much of a support system. It’s so sad😢. I was outdoors this morning with friends, saw the most beautiful flowers. Looking at nature and seeing the bigger picture really helps through withdrawals too. Having friends that care about you helps too. 

 

I had friends over for lunch. One little two year old was so adorable, she kept holding my hand and hugging me,  I think we’re friends for life now😂.

 

Thank you for the info about the itch cream. I’m not too bad at the moment but it might come in handy in the future. I’m sure other people on this site will find it beneficial too. 

 

Glad you’re doing swell, keep me posted on your taper. 

 

I’m in a window but brain fog is severe due to CFS and I haven’t been able to read much. 

 

Sending you big hugs and I hope your taper keeps going well 💚💚

 

 

Hi Survivor, 

 

Thanks for dropping by, 

 

I know what you mean about the brain fog, mine has been pretty bad lately and I can’t read much, listening to novels is always  always an option. 

 

Can’t wait until I can read a novel again. Thanks for the recommendation. I actually like novels with court cases and lawyers and John Grisham really does them superbly. I don’t really like gorey thrillers. I love the old classics too like Jane Austen, Charles Dickens etc. I reckon when one’s brain fog isn’t too bad it’s a great idea to read novels and escape in them. A good distraction from withdrawals.

 

I’m sorry your aquaintance has CFS as well, it’s a really disabilitating illness. I spend lots of time in bed, but I’ve learnt how to stay on a baseline so that I’m able to still go out and do things. It’s a CNS illness too. CFS causes massive brain fog, I have felt for over twenty years that everything around me is surreal. 

 

I’m struggling to read at the moment but when I’m able to I’ll check out your thread again. Thank u so much for thinking of me. 

 

Sending hugs🤗

 

 

 

 

 

 

 

Hi Carmie, sorry to hear you are in a wave, wow you have done well tapering from 300mg of seroquel down to 7.5mg, it is a truly awful drug, i spent many years trying to get off it, once you manage to taper off completely I am sure you will get some relief from the CFS and brain fog, even at 7.5mg seroquel causes this bad, 

 

hoping for a window for you soon

 

take care

[Carmie]

6 minutes ago, dj2010 said:

Hi Carmie, sorry to hear you are in a wave, wow you have done well tapering from 300mg of seroquel down to 7.5mg, it is a truly awful drug, i spent many years trying to get off it, once you manage to taper off completely I am sure you will get some relief from the CFS and brain fog, even at 7.5mg seroquel causes this bad, 

 

hoping for a window for you soon

 

take care

 

Hi dj, 

 

Thanks for dropping by, so kind of you. I’m actually in a window but I still have symptoms. My severe brain fog is mainly due to CFS. 

 

I agree, Seroquel is an evil drug. I can only taper by small increments,  it’s going to take me another ten years or so to get off it, and I’ve been tapering  for many years. I’m having a bit of a break at the moment as I had concerts to go to, and I’ve got a holiday coming up, and I also wanted to have different friends over every week for lunch while I’m in a window. I don’t have much strength because of my illness so I always have to do things in a balanced way. 

 

 I totally agree with you though that once I’m off these meds I have a hope of recovering from CFS too. CFS is a CNS illness, check out Dan Neuffer. I only learnt about this the last couple of years. I don’t have a hope of getting over it until I’m off these meds. I’ve been following different people that have calmed down their nervous system and have gotten over CFS. There is hope. 

 

At the moment I’m just living a day a time. It gives me great happiness to do things for people, no matter how bad I feel. We can always do things no matter what our limits are, sending a thank u card, giving someone a present, encouraging someone with a message when we’re too sick to ring etc. When going through withdrawals it really is important to still think of others as it really gives you such contentment even if we’re feeling anhedonic. 

 

I hope you’re coping ok, haven’t been able to read much because of severe brain fog but as soon as I can will check your thread. Thank u so much again for checking in 💚💚

 

 

[dj2010]

3 hours ago, Carmie said:

 

Hi dj, 

 

Thanks for dropping by, so kind of you. I’m actually in a window but I still have symptoms. My severe brain fog is mainly due to CFS. 

 

I agree, Seroquel is an evil drug. I can only taper by small increments,  it’s going to take me another ten years or so to get off it, and I’ve been tapering  for many years. I’m having a bit of a break at the moment as I had concerts to go to, and I’ve got a holiday coming up, and I also wanted to have different friends over every week for lunch while I’m in a window. I don’t have much strength because of my illness so I always have to do things in a balanced way. 

 

 I totally agree with you though that once I’m off these meds I have a hope of recovering from CFS too. CFS is a CNS illness, check out Dan Neuffer. I only learnt about this the last couple of years. I don’t have a hope of getting over it until I’m off these meds. I’ve been following different people that have calmed down their nervous system and have gotten over CFS. There is hope. 

 

At the moment I’m just living a day a time. It gives me great happiness to do things for people, no matter how bad I feel. We can always do things no matter what our limits are, sending a thank u card, giving someone a present, encouraging someone with a message when we’re too sick to ring etc. When going through withdrawals it really is important to still think of others as it really gives you such contentment even if we’re feeling anhedonic. 

 

I hope you’re coping ok, haven’t been able to read much because of severe brain fog but as soon as I can will check your thread. Thank u so much again for checking in 💚💚

 

 

 

Hi Carmie,

 

you have done so well getting to 7.5mg, how much are you cutting by? surely it wont take 10 years to taper from 7.5mg? 

 

its great that you are doing all the normal things like going to concerts and having friends over, you sound like a really loving caring person who doesn't deserve to be going through this,

 

hope you have a nice weekend

[Carmie]

9 hours ago, dj2010 said:

 

Hi Carmie,

 

you have done so well getting to 7.5mg, how much are you cutting by? surely it wont take 10 years to taper from 7.5mg? 

 

its great that you are doing all the normal things like going to concerts and having friends over, you sound like a really loving caring person who doesn't deserve to be going through this,

 

hope you have a nice weekend

 

Hi dj, 

 

Yes, it’s a relief that I managed to get down to 7.5mg from 300mg. At least the meds are doing a little less damage in smaller doses. I didn’t know anything about tapering when I started tapering so there were many ups and downs. I remember at one stage I couldn’t get out of bed for months. I still kept trying to look on the bright side though and look forward.

 

Recently I’ve been cutting by about 4% or 5%, but I haven’t tapered for a while now.  I’ve got a wedding coming up, another concert  and also a holiday with friends. I’ll start tapering again at the end of August. I’m thinking of trying microtapering. I’m not exactly sure how long it will take to taper as I keep having to adjust it. But I will end up going down to zero point zero, zero something in the end. It feels like it’s going to take forever. I don’t know if ten years is a hyperbole or reality as yet, time will tell.

 

I would rather go slow though as when I go too quick akathisia gets really bad. There is no worse symptom. 

 

It really  does give me inner contentment to do nice things for people, no matter how much I struggle with withdrawals. Everyone seems to be battling with something. Even in a wave you can still do small things like send a card to someone to cheer them up. Whatever distraction we use can also be something we can give to others. I crochet millions of blankets and give them to friends. It benefits me as it calms me during waves and the end product is a present.🎁 It’s a win win situation. 

 

Hope you have a lovely weekend too dj, I’m having a quiet day at home today, and tomorrow morning I’m catching up with friends.

I’m lying in bed at the moment and getting up every now and again to do housework. I’ve got the heater on, it’s lovely n cozy. Even when it’s not too cold here in winter I still turn the heater on, I love the warmth and the  glow of it, it’s very soothing. My cat agrees, she’s asleep in front of it. 😺🔥

 

I think we need to do all we can to make our surroundings welcoming because this withdrawal journey is such a dark journey. We have to make the things around us happy. 

 

Sending big hugs🤗

 

 

 

 

 

 

 

 

[Carmie]

Hi everyone,

 

We can win this fight. We really can, it might take time, sometimes a lot of time, but we will get there. 

 

My  brain fog has been a touch better today so I’ve been able to read a little on a few threads and interact with a few of you most amazing survivors. 

 

Hope to interact with more of you in the future. We are in the fight of our lives, but we will win this battle.

 

When in waves, and I will repeat myself, Keep distracting yourself. Distractions! Distractions! Distractions! Play games, play cards ( there are millions of card games you can play in your own), paint and draw, colour in, play Words With Friends on your iPad, play sudoku, take photos, edit photos, go in nature ( look at all the details in leaves, in trees, in flowers etc), do crafts, learn new crafts, knit, crochet, listen to music, go and see bands ( one of my favourite things ever!) , watch Netflix, watch DVDs, send friends cards, write letters and read novels if your brain fog isn’t too bad, do crosswords. I could go on and on and on. 

 

There really is no limit on the things we can do for distraction. We can do this!

 

When we are in windows pleeeeeease make happy memories, so when we are in waves against n we have fun things to look forward to. 

 

Hang in there everyone, wishing you all the best 💚💚💚💚💚💚

 

 

[DMV64]

7 hours ago, Carmie said:

My  brain fog has been a touch better today so I’ve been able to read a little on a few threads

Isn't it amazing when clarity happens and you can read up on a few threads? This is something I look forward to, and I love your posts because they are so hopeful!

[Carmie]

Hi everyone,

 

A bit braindead at the moment (CFS) but I just wanted to say if you are not sound sensitive please use music to distract yourself from withdrawals. I’ve got the coolest boombox with lights that flashes along with the music.

 

I remember when I was in severe waves I would put on the headphones and just escape into music. It really helps. Put on the music you love and zone out. 

 

Hang in there everyone, we will eventually win this fight. 💚💚💚💚

[Carmie]

18 hours ago, DMV64 said:

Isn't it amazing when clarity happens and you can read up on a few threads? This is something I look forward to, and I love your posts because they are so hopeful!

 

Thanks for dropping by and for your kind words DMV,

 

Yes, it’s wonderful to get a bit of clarity here and there. I really want to read some more books but can’t do much reading at the moment. I read a little here and there, it all adds up. I love reading. When in withdrawals, when my brain fog isn’t too bad, reading novels really helps me to zone out. Haven’t read a novel for a while now though. Netflix and DVDs seem to be the go lately. 

 

Been having fun doing a flower competition with friends. We have to show each other photos of flowers we’ve taken. This is day two. I love nature. Two of my friends are in Vanuatu at the moment and one of them showed me this massive hibiscus, apparently it can cover your whole head. I think it’s so important to keep looking at the nature around us when going through withdrawals, it really is spectacular. Looking forward to seeing what they have taken photos of tomorrow.

 

I remember one day I was so sick with withdrawals but I felt the need the get outside, so I hopped on a bus and went to the parklands in the City and went snapping away with my camera. I love seeing the world through the eyes of a camera. I’ve been a photoholic for over thirty years. I remember when we had to wait to develop film, now everything is instant and there are so many editing apps. It’s such fun. When in waves I’ve spent lots of time editing. It’s a terrific distraction.

 

I remember in one severe wave I kept photoshopping my friends photos and I ended up making them really entertaining and funny. It gave me something to do when I was barely hanging in there. It gave my friends a good laugh too.

 

Hope you’re coping as best you can💚

 

 

 

 

 

[DMV64]

56 minutes ago, Carmie said:

I hopped on a bus and went to the parklands

See? This is amazing to me! You have so much positive energy and ability to get out there. You are an inspiration!

[DMV64]

58 minutes ago, Carmie said:

I remember when we had to wait to develop film

Me too! i have an undergrad degree in design and we spent some time in the darkroom. Winding the film into the canister! I remember!

[DMV64]

I guess I am trying to be interested in things but I can't seem to quite lock into anything. Part of the depression I guess and the taper.

[wantrelief]

I have this same problem, @DMV64.    Sorry, Carmie....I just realized this was your thread.

[Carmie]

Hi everyone, 

 

Hope everyone is coping as best as they can. I’ve crashed this afternoon because of my illness but I had the best morning. I got dropped off at the Parklands in the City, so lovely, waterfalls, a lake, flowers, trees etc. I really am in my element in nature. I haven’t had much strength lately but this morning I managed to walk from the Parklands to the botanic gardens in the City. I haven’t done this in a while so it lifted my spirits soooooo much.

 

Im still in a window so I’m making the most of it, I’m trying to make happy memories so when I’m in a wave again I will have amazing things to look back on. 

 

Im going on a beach holiday with friends in August, it’s winter here in Australia, I can’t go swimming but the weather is still pleasant most of the time. After my holiday I’m going to taper again. That will be at the end of August. 

 

I took a million photos today. Major photoholic here. When I’m too ill to do much I find great comfort in editing photos, making collages and the like. If you love photography as much as I do please take as many photos as you can when you can as editing photos etc can be an absolutely amazing strategy when you’re in a wave. It’s a great distraction. I remember barely being able to cope during some waves but doing things with photos got me through the day. 

 

19 hours ago, DMV64 said:

See? This is amazing to me! You have so much positive energy and ability to get out there. You are an inspiration!

 

Hi DMV, 

I can’t help it, I’m an extremely positive person by nature, it’s just my personality. I can tell you though that when waves have been severe I’ve barely kept my head above water. I just kept thinking though about the things I can do to get me through the day and I just kept doing them. I really well and truly from the bottom of my heart feel that we have to get out in nature. There’s nothing better🌷🌸🌳

19 hours ago, DMV64 said:

Me too! i have an undergrad degree in design and we spent some time in the darkroom. Winding the film into the canister! I remember!

 

I find the greatest comfort in creating things too DMV, 

 

I’ve got a canvas at the moment and I’m going to put a number of positive sayings there, as well as other arty things. Two of my favourite mottos are CONSISTENCY OVER INTENSITY and YOU DON’T HAVE TO EXPLAIN YOURSELF TO OTHERS.

 

Consistency over intensity is all about doing the small things regularly. People feel like they have to go all in with something and then they end up doing absolutely nothing because they feel overwhelmed. Whether it’s changing your diet, decluttering your home and your life, reading things that will help you, studying things etc etc.

 

Trying to constantly explain yourself to others is also very stressful. I find just going with the flow the best thing. My friends are really understanding though, and they take me as I come. I love helping my friends and I think even if we are going through withdrawals we need to think about others too. It can really help you get through withdrawals to do kind things for friends💚

16 hours ago, wantrelief said:

I have this same problem, @DMV64.    Sorry, Carmie....I just realized this was your thread.

 

16 hours ago, DMV64 said:

I guess I am trying to be interested in things but I can't seem to quite lock into anything. Part of the depression I guess and the taper.

 

 I’m sorry DMV and wantrelief that you’re struggling to lock into anything, 

 

I’m the same in a wave but I just force myself to do things. When waves are severe I don’t feel any joy at all but I just keep doing things to distract myself through them. 

 

My mottos really seem to be Distract! Dustract! Distract! during waves. And then when you’re in windows make memories,  lots of lovely memories to look back on, and also to know you will have more of those in the future. I made lots of memories today. In the botanic gardens today they had so many different hibiscus flowers. So many different colours.

 

Okay, my concentration is going, time for Netflix and crocheting. Crocheting takes no effort, I do it automatically.

 

Hang in there everyone. We can win this fight💚

 

 

 

 

 

 

[Rabe]

The walk sounds beautiful Carmie...and what you posted was beautiful!  Bless you!  Hope you feel better soon! 

 

I crashed yesterday...did too much for a few days.  Am realizing my body tried to tell me but I'm not listening or understanding and I keep going.  Trying to better place symptoms with activity level etc.  Hoping it will help in some way.  Thinking about you!!!! 💜

[Carmie]

On 6/26/2018 at 2:03 AM, Rabe said:

The walk sounds beautiful Carmie...and what you posted was beautiful!  Bless you!  Hope you feel better soon! 

 

I crashed yesterday...did too much for a few days.  Am realizing my body tried to tell me but I'm not listening or understanding and I keep going.  Trying to better place symptoms with activity level etc.  Hoping it will help in some way.  Thinking about you!!!! 💜

 

Hi Rabe, 

 

Thanks for dropping by. Yes, the walk was beautiful. Sorry you crashed yesterday. I can’t do too much either,  otherwise I crash (CFS). I can read my body really well now, but every now and again I do too much and then I pay for it and can’t get out of bed for days. I’ve learnt to live on a baseline though, so I can still go out and enjoy things. When waves hit though, I can really be out of action, the waves affect my illness a lot.

 

Today I’m resting for most of the day. I did walk up to the shops though, wanted to get a present for a friend who is in hospital, she just had an operation. I think doing things for others is one of the best things we can do for ourselves as well. It really brings great happiness and joy, something that is needed while going through withdrawals. I’ve got a card and a present, but if I’m too sick to go I’ll give them to someone else to give to her. There’s always a way. 

 

No matter how sick we are, we can always do nice things for others. In this age of technology how nice is it to get a card in the mail? We can make others happy by doing small things like that, even when we’re housebound. That in turn will give us contentment.

 

Hope you have a nice day Rabe💚

 

 

 

 

[Carmie]

Just journaling. 

 

Was just wondering whether to do microtapering at the end of August or to do the brassmonkey slide, but by 4% or so as my body can’t do 10% a month, and then have a two week hold in between each month as brassmonkey did. I’m down to 7.5mg. I’m crushing a 25mg tablet in 20ml of water and I’m taking 6ml of the water at the moment. 

 

I could continue to just keep water titratating my 25mg tablet of Seroquel n just go down by a little each week as per the brassmonkey slide ( haven’t gotten around to figuring out the math yet, will do that when brain fog is not so severe. Not a fan of math.)  Eventually I would have to add more water anyway to get the doses smaller. More math. Help! 

 

My brain always explodes when I have to figure out the math, but somehow I managed to get myself from 300mg to 7.5mg. Miracles still happen😄.

 

I do have a compounding script for 7.5mg of Seroquel too. Haven’t used it yet, still crushing the 25mg tablet. I’m going to get another script next week for the 25mg tablet and keep using that to take my 7.5mg a day. 

 

Because I’ve got a holiday with friends coming up in August I really don’t want to start taking a 7.5mg compounded tablet as it may end me up in withdrawals. I’ve learnt from experience the syringes and cylinders we use are all very different. The discrepancies can be immense. The compounding tablet will no doubt be accurate, but it may differ from the syringe I’ve been using. 

 

If if I decide to use the compounding capsules at the end of August I will take the 7.5mg and hold for a while to see if I do get withdrawals from the discrepancies and then go from there. 

 

Decisions! Decisions! Decisions! 

 

Hope everyone is coping as best they can💚💚

 

 

 

 

[Carmie]

I’m reading the book “ The Art Of Extreme Self Care” by Cheryl Richardson. 

 

I think its really important to take to take care of yourself when going through withdrawals. We can’t do all the things we were once able to do and feeling guilty about that doesn’t help. 

 

The chapter I’m reading at the moment is entitled: “ Let Me Disappoint You. “  In it she talks about learning to say no to people, it’s not easy if we’re a caring person by nature and we don’t like to disappoint people. We might feel guilty or stressed or feel like we’re not a good person by saying no, but we can’t say yes to everything. Even someone who is well can become ill from taking too much on. 

 

We need to take care of ourselves much more so when going through withdrawals. Our CNS has gone haywire and we have to calm it down as much as we can. Doing too much revs up the CNS. 

 

She says some people will get upset when you start to say no as they are so used to you doing everything for them. They might make more demands or tempt you with guilt. Her advice is :” When this happens, the worst thing you can do is give in, as that sends mixed messages and teaches others to doubt your word. Instead, you need to be honest, direct and resolved to take care of yourself. Don’t over explain, defend, or invite a debate about how you feel. The fewer words, the better.” 

 

Some of your friends may not stick around as they have been so used to getting their way and draining you of the bit of energy you have. It really just shows who our real friends are. 

 

Off course, we still want to say yes to our friends and build relationships but we need to do it to show love and strengthen our relationships, not out of guilt and obligation, as Cheryl says this can actually drive a wedge between you and the one you care about.

 

I guess it’s all a matter of balance. Everything in life has to be done in a balanced way. 

 

One good thing to do which I’ve done for years is something mentioned in the chapter too, and that is buy some time. Because of my illness I don’t always say yes to things as I don’t even know how I’ll be feeling on the day. At times I have said yes though, and then end up being too sick to go to something or do something anyway.  

 

Cheryl says instead of saying: “ Yes, I’m in ” take time to consider the consequences to your response and say: “ I’ll get back to you” or something to that effect. Secondly, let the person know up front that you may not be able to oblige. 

 

Anyway, that’s my pondering for the day.

 

Hooe everyone is coping as best they can, Sending hugs🤗

 

 

[Gridley]

Great advice, Carmie.  We have best friends who are moving away to Spain and they want us to go with them to a spa 5 hours away for a farewell couple of days.  My wife is generally supportive but she's not going through it, and when I've expressed reservations , she says wait, because she will really miss them and doesn't understand the bizarre state I'm in.  I will have to say no but perhaps gradually and gently.  

[Rabe]

Hi Carmie.  The fear of fear you talked about on Rosetta's thread and how you stay in the moment is so true...struggling with that as I taper.  Just always thinking about what is to come in the net minutes.  What you said was helpful.  Thank you.

Thank you too for your posts here...I have a terrible time saying no or advocating for myself.  My daughter expects so much of me, rightly so, and each time I have a little window she thinks Im all better and asks for more help with her 1 year old and more help in general....I am an hour away.  I love them so much but dont want to put her daughter in a position where I am not doing well and am caring for her.  Very hard to be in this position when for my kids whole life I was the parent and guardian and helper and problem solver etc.  I am going to try to get that book,  THANK YOU!!!

Wanted to say that when I switched to compounded capsules I found the dose to be very steady,,,even with new rx's and changes in dose with the capsules...all has gone well so far.  I am getting some new capsules soon...instead of .1mg capsules  and talking so many Im going to get .7 and .2 mg capsules so can take one since am holding this med now...also cheaper this way!  I'll let you know if any problems!  Thinking about you!💜