Carmie: accidently doubling up on Seroquel one day while tapering

[Carmie]

Hi everyone,✋I’ve been on a number of different meds in the past due to chronic pain: opiates, benzos, antipsychotics etc. I don’t remember all the names, but I was cold turkeyed at times with severe reactions. 

The reason I’m on the forum now is that I’ve been tapering off seroquel for many years, it’s the only medication I’m on. I’ve gone from 300mg to 7.5mg and am doing water titration now.

 

I just have a quick question. If I accidentally doubled up on my dose one day does that make the withdrawals worse?  I couldn’t remember if I took my dose of 7.5mg because of brain fog a week ago. I couldn’t sleep n thought maybe I didn’t take it as it usually makes me go to sleep, so I took another dose 1am 🌔 as I was so scared of what missing a dose might do.

 

I thought the withdrawals from the last dose were starting the settle, but they’ve ramped up again. I know this happens anyway in withdrawal but I was just wondering if the double dose might have have affected this too? Thank u in advance for your input😊

 

 

[Carmie]

Hi everyone, I just had a quick question. I tried putting it in before in introduction but I’m not sure if I did it right. I’m tapering off seroquel. I managed to get down from 300mg to 7.5mg but with lots of terrible withdrawals.

 

My question is I think I doubled up on my dose over a week ago when I forgot whether I had taken my dose or not. I took 15mg that day I think. I haven’t tapered since but my symptoms have started to rev up really badly. Would accidentally doubling up once cause this reaction? Thank u for your reply and hope everyone is coping as best they can

[Altostrata]

Welcome, Carmie.

 

You did everything right.

 

If you took the wrong dose only once, don't worry about it. Keep on taking your dose at the same time each day. You might want to keep daily notes on paper about your symptoms, when you take your drugs, and their dosages to see if the wrong dose made a difference.

 

How are you feeling now?

[Carmie]

Thank you Alto for your reply,

I’m going to keep symptom records from now on. I haven’t done that so far but I just went into my calendar to have a look at the things I was doing between tapers to remind me of how I was feeling at certain times. 

 

I’ve only kept the records of my tapering back to August 2016, though I’ve been tapering a few years before then. Since January last year I have been tapering about 4% or 5% or so each time and holding for about a month or longer. Looking back now I calculated how long I held before each taper and I realised in March 2016 that I only held for two weeks. The withdrawals were so severe and they hit a peak about over two months later. The akathisia was unbearable, though it did eventually settle again. I didn’t taper again until nearly September as I needed a break and was flying interstate to visit friends and relatives too. 

 

The akathisia has kicked in again this last week but not quite as severe as the taper I was just mentioning. I tend to get some akathisia with most tapers but this last week has been the worst for this year. That’s why I thought taking the extra dose of seroquel may have caused that. I looked at my records again and noticed I tapered after 24 days. I should have left it for a month or longer. My body is really sensitive as I’ve been cold turkeyed off things in the past, before I even knew the hell these meds can put you through. The doctors cold turkeyed me off fentanyl and Valium and I was on n off other things that I didn’t need to be on. It all started off with chronic pain n then there was a downhill spiral as the doctors kept giving me antidepressants n antipsychotics. It’s all such a blur. 

 

Thanks for inspiring me to look at my records. I’m not going to taper now for a little while as I’m still going through withdrawals but I’m thinking of starting a micro taper and see how I go with that. Thanks again

 

 

[Carmie]

 

How is everyone doing with slow tapers.

 

I put this post in answer to someone else’s topic but I thought I’d start a new thread focusing on micro-tapering.

I haven’t micro tapered before, I’ve been tapering for years using the cut and hold method. Have gone through severe withdrawals but have managed to get down from 300mg of seroquel to 7.5mg. Some of my holds were long as I needed a break from withdrawing and some of the withdrawals took longer to subside. 

 

Was thinking of doing a micro taper next with the smallest of amounts. Have been using water titration for ages now. I won’t be doing a micro taper as yet as I’m still going through withdrawals from my last cut and hold.

It took me forever to do the math though, as I have no concentration and memory is really bad. I’ll probably change it the lower my dose gets. If I need to hold I’ll hold. Might take me a million years to get off these meds😃.

 

This is what I’ve figured out for now: 

 

A 7.5mg compounded capsule in 300ml of water.

 

Each ml=0.025mg

Half a ml=0.012mg

Quarter of a ml= 0.006mg

 

5% of 7.5mg = 0.37mg

 

If I go down by 0.012mg every day for 30 days that is 0.36mg a month and 1.44mg every four months.

 

If it ends up being too quick I could go down a quarter of a ml a day which is 0.006mg, which would be 0.72mg every four months. That’s working on a 2.5% reduction every month instead of 5%.

 

My brain nearly exploded trying to figure out the math😃. Took me ages as I have no concentration.

 

Hope everyone is coping the best they can.

 

 

 

[Carmie]

Oops, I think I put this in the wrong section🤓.I don’t know how to move it to tapering.

 

Is anyone else doing microtapering at the moment? When these withdrawals subside I’m going teeny tiny increments.

[Rosetta]

Hi, Carmie,

 

Thanks for your note on my thread.  I've had PMS headaches for a long time and always worse in the Spring.  I used to be able to take pain medicine for them.  All I use now is ibuprophen, and it doesn't do much.  The perimenopause is making this more difficult, I believe.  Thanks for asking, Carmie.

 

Yes, Akathisia is rough.  I thought it was behind me, but I'm feeling it sometimes now at a lower intensity.  It's still difficult.  I'm sorry you have it, too.  You are a survivor!  All those meds, and now you have only one left.  Good job!  

 

By the way, your post about micro tapers will probably be merged with this post when a moderator finds the time.  The easiest way for the mods to help is for all posts by one member that relate to that member's WD to be under one thread in introductions.  They need to see everything you write about yourself in one place.  

 

You may get a post here asking you to keep everything related to your personal journey on this thread.  Please don't be upset or offended.  The mods find it very difficult to keep up with everything.  They are all volunteers and most are struggling with WD symptoms themselves.  They don't want to miss something important if it is in another place.  Each member gets only one introduction thread, and that way the Mods can keep it simple for you and for them.  Sometimes, I find myself writing something new about myself on someone else's thread or in the Symptoms forum. So, I put a copy on my thread, too.

 

Welcome to the forum.  You will get help with micro tapering here.  There are a few experts.  They will double check your math and help you get your doses right if you have cog fog.  Just remember to post in advance of making a change and wait for an answer.  You can write "Bump" on your thread and post it if you feel your post has been lost too far down the list.

 

Best of luck to you, Rosetta

[Carmie]

Hi everyone again,

Have just been pondering on how important holds are whether we do the cut and hold or microtapering. So far I’ve only done the cut n hold method but soon when this last batch of withdrawals subsides I will start microtapering. I’m even thinking of making this last hold longer just to have a bit of normalcy for a little while. I have CfS, so I’m pretty sick as it is, and every now and again in the past when the withdrawals from the last taper subsided I held longer so that I could live life, go on a holiday etc. 

 

I hit severe trouble a few times when I tapered a bit quicker than my body liked or when the holds were too short. Akathisia and feeling like I was physically being electrocuted were my worst symptoms. The feeling of being electrocuted was unbearable, so I went back up to the last dose I was on until it went away and then tapered slower. This was a couple of years ago and I haven’t had this symptom since. I’m glad I didn’t go back to the original dose but just to the dose I was on last. It worked and I think within a week or so the electrocution feeling stopped. 

 

The internal akathisia hits though if I don’t hold long enough. Usually I hold for more than a month but recently I tapered again after only 24 days. Not a good idea! It’s settling now. Let’s see how I do on microtaper. As you can see from above I will be doing the most minuscule of microtapers. I’ll have to figure out what kinds of holds I will need in between. It’s all trial and error and listening to your body as what works at one time might not work at another time. Here’s to taking it a day at a time.

 

Will post how I do on this microtaper.

 

Thinking of you all in going through the hardest thing anyone will have to go through in their whole life.

[Carmie]

Thank you for your message Rosetta, 

I didn’t realize until later that this will be my thread so I posted again on my other thread. Just figuring out how it all works now. I just put some more comments on the other thread I started but since you’ve contacted me I’ll continue to do it on this thread. I should just rewrite everything on this thread. I’m sorry about your headaches, that would be horrible. The withdrawals from my last taper are subsiding but I might have a little break before starting my microtaper. During my tapers I’ve had a lot of reprieve as long as I taper slow and hold a long time. 

 

Anyway, what I was saying on my other thread was that the thing I’ve learnt the most about this journey is not to rush it. A couple of times when I thought I’ll go just a tiny bit quicker it didn’t work. Not a good idea. I didn’t taper by much more, just a little and didn’t hold as long. Slow and steady wins the race. It might take many, many more years but if we have any resemblance of life through this it’s well worth it. As you know tapering isn’t linear either and we keep having to change things. 

 

The microtaper i will be starting once I feel like tapering again is so tiny, tinier than the ones I’ve read so far on this site so I’ll see how I go. I think I’m going to hold for a little while now as I have a number of social engagements and haven’t quite gotten over the last taper, though the internal akathisia is subsiding. I haven’t had much trouble with it for ages but I only held for 24days instead of over a month or more last time. 

 

Slow and steady does it. I hope you’re headaches go soon and thanks again for helping me to get back on this thread

[xyz]

hi Carnie,

a year ago, i switched to liquid daily micro taper after a 4 months hold. i didn't feel 100% after the 4 months but felt decent enough to tackle my taper again.

when i switched to liquid i also held my dose for 2-3weeks. if you are just crushing your pills, you might be fine.

i was able to cut very steadily and taper 2 meds at the same time (not recommended though) but i had to hold every 3 or 4 weeks or so for a couple of days.

i just came out of a 26 days hold on the valium and started micro tapering again 2 days ago.

 

with the microtaper, you still need to hold but not that long.

when i get hit with bad waves, i know that it usually take a couple days of hold to feel better which is really nice.

 

i am 125% functional 

 

[Carmie]

I’m soooo glad you’re functional xyz.

I started two posts in introductions n the moderators will eventually put them together I’m sure. I was still getting used to this forum and accidentally posted two different times. I’ve been doing water titration for over a year but haven’t microtapered as such. I’m a bit braindead at the moment but will be in contact soon. Thank u so much for your message. I’ll check out your posts as soon as I’m able to. Just going to have a little break from tapering as I have a few things coming up. Will keep in contact with u my microtapering friend. 

 

We can do this!

[Shep]

Carmie, I've merged your two threads. 

[Carmie]

Thank u so much Shep, I really appreciate it. This forum is amazing!!!

[Carmie]

Hi everyone, 

Hope everyone is coping as best as they can. Have been reading through quite a few of your threads and boy, you are all so brave!! This really is a struggle. I’m in withdrawals now, they are bad but bearable, I’m hoping to microtaper once these withdrawals subside and then also have a little break before doing that. 

 

I feel so so much for each and everyone of you. One of you said that you don’t want to mention all the horrible symptoms you get when you taper too fast as no one would believe you. Tell you, me, EVERYONE on this forum would be able to relate, and they would definitely believe you. 

 

Thank you to all you amazing people on this forum.

 

 

[Rosetta]

I'm glad you found SA.  It's important to know that what you are experiencing is not mental illness, and equally important that you know you can heal.  (Once one thinks about what the drugs do, it makes perfect sense that our neurotransmitters would be changed for the worse after quitting the drugs.). However, be careful when reading the threads.  Each person has a different journey.  You stand a good chance of not having a severe case, and I would not want you to become afraid because you saw something that scared you.  

 

SA, in a nutshell, says that once in WD the trick is to avoid new substances that may irritate the CNS.  Avoid adrenaline based numbing agents at the dentist for example.  Avoid alcohol, sugar, caffeine, and all supplements (except magnesium and Omega 3 fish oil.)  Avoid elective surgery!! Of course, avoid prescription pain meds and illegal substances.  Avoid muscle relaxants, and the list goes on.  Anything can affect the nuerotransmitters.  Some people can use ibuprophen or acetaminophen.  

 

This one is big: avoid antibiotics if you can especially those with "flox" in the name.  Cipro is a "flox" antibiotic.  They affect brain chemistry.  All antibiotics affect the gut flora which is disturbed by ADs, and we hope will return to normal after we stop using them. All changes to the gut can affect brain chemistry.  However, the "flox" antibiotics are reported on SA to be the most problematic.

 

I try to eat organic food to avoid what might be in the food that would cause me problems.  Some people avoid wheat and gluten and all carbs.  I've thought about doing that.  At the moment it's too hard for me.  

 

You can type " survivingantidepressants.org magnesium" into Google or any search engine to get a list of possible topics on SA.  (SA's search engine apparently doesn't work as well.). You can search any topic this way, such as "survivingantidepressants.org bruxism."

 

If you try magnesium use only a little at first, and up the dose after seeing how it affects you.  So, try it for a week before you raise the dose.  I use "Calm" which is magnesium citrate.  My Epsom salts are magnesium sulfate.  If one type of magnesium bothers you, there might be another that doesn't.  Don't try fish oil at the same time as magnesium, but wait until you have a chance to see how one or the other affects you first.  

 

I hope stabilize soon soon and have an easy taper!

 

Peace, Rosetta

 

 

[Carmie]

Thank you Rosetta for all your sound advice,

 

 I don’t eat dairy, sugar or any grains. I’ll get myself myself some magnesium and fish oil.

 

Hope you’re doing okay

 

 

[Carmie]

Distractions, distractions, distractions is all I can say when you’re going through a wave.

 

I watch Netflix and DVDs and crochet while doing so, just the same stitch over n over again to keep me occupied, It doesn’t  need much brain power, it’s just repetition. I make blankets for friends, I’m sure I’ve made over one hundred since the tapering started. I should have counted them. I find the constant motion of crocheting therapeutic. 

 

If you can make something to distract yourself that doesn’t take too much thinking, then you also have the delight in giving people presents.

 

Here’s to eventually healing

[Kristine]

Hey Carmie, Just dropping by to welcome you to SA and say hello from a one Aussie to another. Well done for tapering the Seroquel so slowly. You have done so so well! I was also on 300mg of Seroquel. Much Love K xo

[Carmie]

Hi Kristine, 

Thanks for the welcome. I’m not sure how to cut n paste so don’t know if you’ll get this message.

 

Im thinking of getting a weighted blanket for the next time I’m in a major wave. I’m still in a wave, but it’s bearable. I hear weighted blankets are very comforting. 

 

Have the headphones on at the moment, cranking up the music for distraction. Loooove my music. Go to a number of concerts every year, it’s somethimg to look forward to. Going to Celine Dion and Imagine Dragons this year. 

 

Thanks again

 

 

[Kristine]

Hey Carmie, I'm not very tech savvy and when I joined the site it took me a while to figure out how to "quote someone" I'm assuming this is what you mean by "copy and paste".....If you want to quote a member and reply to their post...

• at the bottom of each post you'll see 'quote' with a plus sign next to it
• click on the plus (+) sign
• hightlight what you would like to quote
• 'quote this' will appear below what you highlighted
• click on 'quote this'
• Your quote should then appear in the space where you usually type your posts...then you can add your own message befor you send the post. 
• i use an iPad not a laptop...I'm assuming the layout is the same. 

I hope this helps. I'm sorry you are suffering a wave. I hear weighted blankets are very beneficial for anxiety, I've been thinking of getting one myself. I'm so pleased you can enjoy music and go to a concert! This is wonderful Carmie 

[Carmie]

4 hours ago, Kristine said:

Hey Carmie, I'm not very tech savvy and when I joined the site it took me a while to figure out how to "quote someone" I'm assuming this is what you mean by "copy and paste".....If you want to quote a member and reply to their post...

• at the bottom of each post you'll see 'quote' with a plus sign next to it
• click on the plus (+) sign
• hightlight what you would like to quote
• 'quote this' will appear below what you highlighted
• click on 'quote this'
• Your quote should then appear in the space where you usually type your posts...then you can add your own message befor you send the post. 
• i use an iPad not a laptop...I'm assuming the layout is the same. 

I hope this helps. I'm sorry you are suffering a wave. I hear weighted blankets are very beneficial for anxiety, I've been thinking of getting one myself. I'm so pleased you can enjoy music and go to a concert! This is wonderful Carmie 

 

Thank you Christine for helping me work that out,

 

How did you manage to get off seroquel so quickly, especially seeing you were on 300mg as well. I’ve been tapering for many, many years and get withdrawals every time. I can’t go any faster as I feel like I’m being physically electrocuted if I do and the akathisia gets unbearable.

 

I don’t care how long it takes me to get off the meds. I’m going slowly all the way so at least I get lots of windows in between the waves. It’s unbearable otherwise.

 

Thanks for popping by, sending hugs

[Kristine]

You're welcome Carmie

28 minutes ago, Carmie said:

How did you manage to get off seroquel so quickly, especially seeing you were on 300mg as well

Firstly, I didn't manage. I was very sick and disabled. Still am, but I've improved.  Secondly, I'd already come on and off multiple medications in a short period of time...At the time I didn't know what w/d symptoms were caused from what drug or what were side effects or what were drug interactions.  I can say that after ceasing seroquel 300mg over just 3 weeks I didn't sleep at all for 2 weeks. 

39 minutes ago, Carmie said:

I don’t care how long it takes me to get off the meds. I’m going slowly all the way so at least I get lots of windows in between the waves. It’s unbearable otherwise.

You have the right attitude  I couldn't agree more!! You are doing so well!

[Carmie]

Just got a 7.5mg compounding script for Seroquel. The smallest tablet it comes in is 25mg. 

 

I’ve been doing water titration for quite a long time now n have been using a 25mg tablet to get down to 7.5mg. 

 

I have been using 20ml of water but because I eventually want to microtaper I want to make the decreases as tiny as possible so the next step is using the 7.5mg capsule in 300ml of water. I got a script of 200 capsules so that will keep me going for about six months or so once I start the taper. I ordered the measuring cylinders off eBay. I’ve only needed to use syringes so far.

 

Won’t be starting that for a couple of months yet. Still have withdrawals from the last cut and hold and want a little break from tapering.

 

Hope everyone is hanging in okay.

 

 

[Carmie]

Good night from Australia everyone,

 

This really is the the toughest battle any of us will go through. Hoping you’re all coping as best as you can through this immense trial, whether you’re doing the cut n hold taper or microtapering or doing a bit of both. 

 

If you’ve cold turkeyed I feel your pain too as that’s happened to me in the past as well. 

 

All we can do is take a day at a time and continue thinking about our brains healing with every day that passes. This can be so hard at times, especially when we’re going through a wave. Waves do eventually end, just as waves in the ocean eventually end. We never know when though and that’s the scary part. 

 

Here’s to taking a day at a time, sending hugs to everyone 💚

 

 

[Carmie]

Depersonalisation is such a weird feeling, isn’t it? I’ve had brain fog and feeling like I’m not really here for 23 years because of chronic fatigue syndrome but still managed to find joy in some things.

 

Withdrawals takes it into another level totally. Have had a bad week from a taper I did a couple of months ago. It was only a small taper but I tapered too soon as my withdrawals hadn’t subsided enough. I don’t usually do that. Won’t be doing that again. As we all know though, even when we do all we should do we can still get severe withdrawals. I’m just glad the akathisia isn’t too bad at the moment.

 

I was so pleased a couple of days ago when I looked at the flats next door and actually had a real sense of inner joy as I saw the most beautiful yellow flowers. I got my camera out straight away n took photos. I’m a photoholic and love photography but for weeks have been too numb to do much. I went to a fancy dress party the other week and took photos but had trouble finding the joy in it. I am really fortunate to have lots of amazing friends though. They don’t know what I’m going through but they are always so caring. 

 

 I’ve organised a tropical bbq at a friend’s place in a couple of weeks, got all the decorations, my outfit etc but I’m having trouble with how numb I’m feeling at the moment. I’m hoping the withdrawals will have subsided more by then.

 

I’m very creative by nature and I feel I need to keep expressing my creativity, I need to continue to be myself despite the pain I’m going through. 

 

What got me through a lot of the last couple of years too was having concerts to look forward to. One of the concerts I went to last year was Twenty One Pilots. I love them. I’m over fifty and went with a seventeen year old friend.  Most of the friends my age didn’t know who they were. Their music really resonates with me. It’s all about coping with the pain we go through in life and the beats are pretty cool! When I felt like dying I would crank up their music on my headphones, it’s funny that music about coping with depression actually uplifted me. 

 

As for akathisia here’s a good explanation I read:

“Like you’re trapped in hell, in a horror movie. Unbearable emotional pain, and no escape. A sense of terror, like I’m dying every single second.”

 

Yep, when it’s bad, that’s what it’s like. I’m okay at the moment though. 

 

Anyway, all you lovely people out there, sending lots of hugs to all of you🤗🤗🤗

 

 

 

[Rosetta]

HI Carmie,

 

Keep writing.  People are reading, but they may not comment and weekends are slow around here.  Yes, that's a good description of Akathisia for someone who has experienced it.  For someone who hasn't I don't know how I would make her understand!

 

Depersonalisation was something I had only a short while.  It would have terrified me if I hadn't found SA prior to experiencing that.  I still thought it would go on for ever or get worse, but I knew others claimed it would not.  They were right.  

 

Wonderful news that you saw beauty in the flowers!!  As for the tropical party, try not to think about whether you will enjoy it.  I have found that I worry and worry about that, but once I get there and there are people to talk with I don't feel anhedonia.  I might feel overwhelmed eventually, but I'm engaged, and that's what's important for rewiring my brain.  That's how I will get to the point that I can enjoy a party to the fullest someday in the future.  I'm very impressed that you planned a party and got decorations.  That's showing good cog function!  Yea!

 

-Rosetta

[Carmie]

Hi everyone, 

 

This is part of an article I read addressed to the public that I thought was really on point.  I don’t know who wrote it though. 

 

This part sums up what we are suffering in a nutshell:

 

Benzodiazapine and antidepressant withdrawal cannot be controlled. No amount of saying “Snap out of it” or “go and do something worthwhile with your life” is going to help. People with withdrawals are unwell because their central nervous system is temporarily compromised and unbalanced, resulting in a myriad of painful and bizarre mental and physical symptoms. 

 

What is happening must be regarded as physiological (organic in origin) and not “ mind over matter.” Even in cases where anxiety, depression or insomnia were issues before, this time around, in order to be truly supportive, you must ask yourself how you would treat a relative or friend with a temporary brain injury, and use the same approach. Recovery is the outcome, but it takes time.

 

Well written!!

 

 

 

 

[wantrelief]

Thanks for your visit to my thread, Carmie.  I like what this article is saying, it really doesn't feel like "mind over matter" when you are in the thick of this and does feel like a brain injury. 

[Carmie]

1 hour ago, wantrelief said:

Thanks for your visit to my thread, Carmie.  I like what this article is saying, it really doesn't feel like "mind over matter" when you are in the thick of this and does feel like a brain injury. 

 

It’s definitely brain injury, but we have to keep remembering it’s not permanent. Each and every one of us will eventually be success stories. While we are suffering it feels like it’s never going to end. I like the quote up above that I shared which said: “Recovery is the outcome, but it takes time.” 

 

I’m feeling really teary at the moment as I wasn’t able to go to an event this weekend that meant a lot to me. The reason I’m teary though is that I mentioned to a friend what I was going through and why I couldn’t come and she told another friend and they just contacted me to say they wanted to catch up to see how I was going. I am soooooo grateful for my friends. They can’t take away my pain but they always have my back. Here’s to good friends despite them not being able to help us. I hope that everyone here has lots of good friends. Just knowing that people care makes all the difference.

 

At the moment I’m cranking up the music, major music freak here. Have a cool boombox attached to my iPad. Spotify is amazing, though I own millions of CDs too. 

 

Here’s to surviving another day💚

[xyz]

Hi Carmie,

i hope you are doing okay. what were the reasons you couldn't go to that event?

i am a big fan of music too. anything that makes me wants to move, the popular big hits.

 

i read in your signature that you had chronic pain? how do you manage them?

how long have you been on seroquel?

 

[Carmie]

20 minutes ago, xyz said:

Hi Carmie,

i hope you are doing okay. what were the reasons you couldn't go to that event?

i am a big fan of music too. anything that makes me wants to move, the popular big hits.

 

i read in your signature that you had chronic pain? how do you manage them?

how long have you been on seroquel?

 

 

Hi xyz, 

 

I have trouble with memory but I think I’ve been tapering off seroquel four or five years, but don’t quote me on that😃. 

 

My chronic pain has subsided so I’m okay with that at the moment.

 

Couldn’t go to the event because of withdrawals and Cfs, pretty much stuck in bed. 

 

Hope youre okay, please keep me updated on your microtaper. You are doing amazing, sending hugs your way 🤗

[xyz]

what is CFs?

 

[Carmie]

48 minutes ago, xyz said:

what is CFs?

 

 

Chronic fatigue syndrome. It affects your whole body too, it’s very debilitating. I spend a lot of time in bed and lying down. 

 

It’s a CNS illness too, so I have no hope of recovering from it until I’m over withdrawals and I’m sure I’ll be tapering at least another five years if not more as I can only taper the minutest amounts. 

 

I look forward to seeing how you go with the microtaper, I will probably start microtapering in two months or so.

 

Still going through withdrawals from my last taper. Am trying to find something to watch on Netflix now to distract myself. The new Lost In Space was really good, can’t wait for season two. I think in the throws of withdrawals all we can do is distract, distract, distract. Still crocheting blankets non stop, have made over a hundred I’m sure, they make great pressies for friends and it’s very therapeutic. It makes me happy that even when I can’t do much I can still do something nice for others. 

 

Like I said in my last post, I am so grateful for all my friends. They would have no idea what I’m going through with withdrawals but they are so caring and I love them to bits. You really know who your friends are when you go through a hard time and I’m so glad all my friends are still with me. Hope you have a good support network too

 

Good night from Australia

[wantrelief]

I am so glad you have such understanding and caring friends, Carmie.  

[Carmie]

16 hours ago, wantrelief said:

I am so glad you have such understanding and caring friends, Carmie.  

 

Thanks wantrelief,

 

I hope you have lots of supportive friends too. I know they would do anything for me, but they can’t take the withdrawals away so you can still feel quite alone when you’re going through a  wave. I’ve socialised when I’ve been really ill and barely coping, but I kept thinking to myself that it’s a great distraction. This is especially the case when music is involved as it’s the best distraction ever! Major music fan here, love my concerts and live music. 

 

I spend a lot of time on my own though because too much sensory input can be overwhelming too. It’s a balance between the two.

 

Sending hugs your way 

 

[Carmie]

Journaling: 

 

I’ve started writing my symptoms down in a journal at home as all I’ve written down in the past was the amounts I tapered by. It’s good to have a book with all the symptoms written in as you can see that everything is temporary, things come and go, come and go.

 

Woke up this morning shaking and am really jittery. It’s day 52 since my last taper. 

 

Yesterday my whole day was waves and windows. Strange how you can be up, down, up, down all in one day. I just kept distracting myself by watching Netflix, crocheting and doing some housework.

 

One minute I’m really warm and the next minute I’m really cold. I go from turning on the heater to turning on the fan.

 

I’ve really learnt too that all the weird symptoms are not other illnesses but withdrawals. A couple of weeks ago I had tooth pain and earaches and thought I had infections, but no. Withdrawals! Last year I had a burning mouth and couldn’t figure out why and have now realised again, it was withdrawals. Now, every time I get a new symptom I know it’s more likely than anything to be withdrawals.

 

Hang in there everyone.