It’s now been two months since I’ve been trying to stabilize and today I’m having a bad day and feeling uncertain about whether I’ve made any progress at all. The brain fog and negative emotions today are intense. Right now I’m crying in my kitchen with my cat in my lap. But I’ll keep going trusting that this is the best path forward.

Really grateful for the community here. Sending love to all of you 💜

Cat therapy can be wonderful! 😺

Its a bump in the long road to recovery, but you'll be back on track before you know it!

10 hours ago, SarahMc said:

It’s now been two months since I’ve been trying to stabilize and today I’m having a bad day and feeling uncertain about whether I’ve made any progress at all. The brain fog and negative emotions today are intense. Right now I’m crying in my kitchen with my cat in my lap. But I’ll keep going trusting that this is the best path forward.

Really grateful for the community here. Sending love to all of you 💜

So incredibly hard to feel any progress in this brutality but that is where the system heals the most.

Hang in there @SarahMc and don't let doubt creep in, you are constantly moving forward and very strong to deal with this as you continue to prove it to yourself.

Sending my love and wishing you a much easier day today 💗

Edited June 4Jun 4 by Fullhealing

@SarahMc Some days all we can do is cry (with a cat in our lap). But this is the right path. We've been led down a wrong path previously, and now we have to find our way back to the right one. It's terribly hard, but nothing good ever comes easy, sadly. Sending a hug. ❤️

12 hours ago, SarahMc said:

It’s now been two months since I’ve been trying to stabilize and today I’m having a bad day and feeling uncertain about whether I’ve made any progress at all. The brain fog and negative emotions today are intense. Right now I’m crying in my kitchen with my cat in my lap. But I’ll keep going trusting that this is the best path forward.

Really grateful for the community here. Sending love to all of you 💜

Sending some love Sarah, sorry yesterday was hard, I know that feeling of doubt, but we know that time is the healer, unfortunately it can be more time than we would like. Hope today feels more hopeful. xxxx

Thanks @mstimc60, @Fullhealing, @Marina and @Chippy. Appreciate you all.

Unfortunately I’ve woken up in the same place I was yesterday. Looks like I’m back in a wave. It’s so frustrating because it feels like I can’t fully get rid of any of my symptoms. And I can’t even say that I know what “WD normal” should feel like yet. On my best days so far my symptoms have probably gone down to a 4 or 5/10 (on my own subjective scale, of course) and on days like yesterday certain symptoms still spike up to a 7 or 8/10. Stabilization feels so far out of reach.

Yesterday evening I felt this intense anger but I couldn’t tell if it was a “neuroemotion” or just genuine rage at the situation I’m in. Maybe a bit of both. What a journey.

Anyways, thanks for listening 💜

20 hours ago, SarahMc said:

Unfortunately I’ve woken up in the same place I was yesterday. Looks like I’m back in a wave. It’s so frustrating because it feels like I can’t fully get rid of any of my symptoms. And I can’t even say that I know what “WD normal” should feel like yet. On my best days so far my symptoms have probably gone down to a 4 or 5/10 (on my own subjective scale, of course) and on days like yesterday certain symptoms still spike up to a 7 or 8/10. Stabilization feels so far out of reach.

Hey Sarah, sorry to hear you had a rough day again yesterday. What a journey indeed! You'll know when you hit WD Normal, you'll recognise it for yourself, it will feel like you are basically ok, managing, you can still feel symptoms but they don't effect your day to day life, and whilst you wish they were gone you are basically living ok with them. It's good to see your symptoms lessen quite a bit, that cycle of waves and windows so famous with this process, all signs of your body healing/adjusting and looking for something balance, homeostasis. It is coming. Be reassured that this is the normal process. Honestly the amount of different drugs and doses you have had, your body may need some time to get stable, think months rather than weeks, there will be healing going on there too, not just adjusting to your current dose regime, I don't say this to dishearten you, just to reassure that you are doing the right thing.

20 hours ago, SarahMc said:

Yesterday evening I felt this intense anger but I couldn’t tell if it was a “neuroemotion” or just genuine rage at the situation I’m in. Maybe a bit of both. What a journey.

Could be a bit of both of course, but when you think stress can agravate WD, any natural anger you rightly feel over this can't be processed in the way you would 'normally' and just feeds the neuro-emotions. It is why they feel soooo real! Anything you can do to distract yourself from those thoughts and keep yourself in the present and out of the past can definitely bring some peace to your mind and help keep things calmer.

20 hours ago, SarahMc said:

Anyways, thanks for listening 💜

Thanks for being awesome!

Hope things settle a bit at least soon for you xxxx

@SarahMc Your body has had to cope with a lot in the last 6 months or so.

Hopefully in some more time, you'll have more ok days.

21 hours ago, SarahMc said:

Yesterday evening I felt this intense anger but I couldn’t tell if it was a “neuroemotion” or just genuine rage at the situation I’m in. Maybe a bit of both.

I often have difficulty separating the two. Being unhappy with the situation is completely reasonable, and valid.

22 hours ago, SarahMc said:

Thanks @mstimc60, @Fullhealing, @Marina and @Chippy. Appreciate you all.

Unfortunately I’ve woken up in the same place I was yesterday. Looks like I’m back in a wave. It’s so frustrating because it feels like I can’t fully get rid of any of my symptoms. And I can’t even say that I know what “WD normal” should feel like yet. On my best days so far my symptoms have probably gone down to a 4 or 5/10 (on my own subjective scale, of course) and on days like yesterday certain symptoms still spike up to a 7 or 8/10. Stabilization feels so far out of reach.

Yesterday evening I felt this intense anger but I couldn’t tell if it was a “neuroemotion” or just genuine rage at the situation I’m in. Maybe a bit of both. What a journey.

Anyways, thanks for listening 💜

No doubt neuroemotions, the awful rage with all the emotional chaos, so damn brutal but we know how different it feels on good days so hang in there and keep being strong @SarahMc better moments just around the corner!

Much healing, strength and peace to you 🙏🩷

Edited June 5Jun 5 by Fullhealing

@SarahMc sending lots of virtual hugs and support! i hope you get some more relief soon. the feeling of being in a wave is really deceitful because it really makes you think that youll never get any better and that youve never had good moments. but that is what it does, it clouds your better judgement and when you feel a bit better that cloudiness is lifted just a bit to allow you to actually see and think more rationally.

Thank you so much everyone. Woke up with a headache today but a bit less intense despair so 🤷‍♀️. Every day is a new adventure!

3 hours ago, Chippy said:

Be reassured that this is the normal process. Honestly the amount of different drugs and doses you have had, your body may need some time to get stable, think months rather than weeks, there will be healing going on there too, not just adjusting to your current dose regime, I don't say this to dishearten you, just to reassure that you are doing the right thing.

I know. Thanks @Chippy, it’s not disheartening — in fact the opposite. I think my real fear is that I won’t stabilize at all and I’ll just be like this, or worse, until long after I get off these drugs. And I know that no one can tell me for sure whether or when I’ll stabilize, so some days I just feel lost.

Just to give myself some structure, I think I’m going to tell myself that I’ll hold for at least 6 months (until Oct) and check in with myself at that point. I want to get out of my constant internal dialogue of “Will I stabilize? When will I stabilize? Etc” and I think a long hold and firm check-in date will help take my mind off it a little bit.

3 hours ago, SarahMc said:

Just to give myself some structure, I think I’m going to tell myself that I’ll hold for at least 6 months (until Oct) and check in with myself at that point. I want to get out of my constant internal dialogue of “Will I stabilize? When will I stabilize? Etc” and I think a long hold and firm check-in date will help take my mind off it a little bit.

That sounds like a good strategy. This isn't a race--you'll taper when your body says the time is right. The doubts and "what ifs" can make the journey so much more difficult than it should be, but you're doing great and taking the right approach.

@SarahMc , just stopping by.

sorry your struggling You've helped me keep perspective during the dark days, and I hope you can hold on to the fact that you've had better moments too and better moment will come even if they're hard to see right now.

Time really does heal. Recovery isn't linear, but over time things do become more stable, even when it doesn't feel that way in the moment.

Keep holding on. Better days will come again!!

20 hours ago, SarahMc said:

Just to give myself some structure, I think I’m going to tell myself that I’ll hold for at least 6 months (until Oct) and check in with myself at that point. I want to get out of my constant internal dialogue of “Will I stabilize? When will I stabilize? Etc” and I think a long hold and firm check-in date will help take my mind off it a little bit.

I think this is a great idea!

Thanks all. This wave is a real b***h, but I’ll get through it (as will all of you) 💜

15 minutes ago, SarahMc said:

Thanks all. This wave is a real b***h, but I’ll get through it (as will all of you) 💜

Love that spirit @SarahMc wishing you blessed relief now.

Edited June 6Jun 6 by Fullhealing

9 minutes ago, Fullhealing said:

💜

Love your fighting spirit @SarahMc wishing you blessed relief now 🩷

Thanks @Fullhealing, I hope things are a bit better for you today.

Hi all -- logistics question time. So far I have been getting my 12.5 mg dose of seroquel by cutting a pill in half. I know this is absolutely not ideal, but I felt very out of my depth reading about weighing and making DIY liquids, and honestly my brain has often felt too cloudy to process that kind of information. But I'm a bit clearer today so thought I'd take advantage.

I'm currently only prescribed 12.5 mg/day so I can't afford to waste a whole pill each time I make my dose. It seems potentially easiest to make a DIY liquid every second day and keep the second half in the fridge for the next day -- but I'm not 100% sure if seroquel is water soluble and if the liquid will keep for 24h. Can anyone comment on that?

Also, the DIY liquids instructions on here say that it should be prepared in a dark glass jar. How important is that?

Finally, if anyone thinks that for some reason I shouldn't be going the liquid route, let me know. The main reason I'm leaning that way is because the math involved seems much simpler and I'm afraid of making mistakes going the weighing route, especially when I start tapering down further.

13 hours ago, SarahMc said:

Hi all -- logistics question time. So far I have been getting my 12.5 mg dose of seroquel by cutting a pill in half. I know this is absolutely not ideal, but I felt very out of my depth reading about weighing and making DIY liquids, and honestly my brain has often felt too cloudy to process that kind of information. But I'm a bit clearer today so thought I'd take advantage.

Hey @SarahMc sorry for the delay in getting to this.

If you are cutting your pill in half and not weighing it at the moement, I would get set of scales as soon as possible and start doing so. Cutting the pill just gives a really inaccurate dose that will vary each day. It is really easy to weigh your pill and we can help you with this :)

13 hours ago, SarahMc said:

I'm currently only prescribed 12.5 mg/day so I can't afford to waste a whole pill each time I make my dose. It seems potentially easiest to make a DIY liquid every second day and keep the second half in the fridge for the next day -- but I'm not 100% sure if seroquel is water soluble and if the liquid will keep for 24h. Can anyone comment on that?

No need to waste the pills, either route you can be nice and effcient with them.

13 hours ago, SarahMc said:

Also, the DIY liquids instructions on here say that it should be prepared in a dark glass jar. How important is that?

It is only needed if you store the solution for any length of time imo. If it's in fridge I think it would be fine any tbh. They sell on Amazon these small dark pots for makeup and so on in sets of 4, they are inexpensive and you can buy them in sizes that best suit the liquid solution you are working with. I like them a lot.

13 hours ago, SarahMc said:

Finally, if anyone thinks that for some reason I shouldn't be going the liquid route, let me know. The main reason I'm leaning that way is because the math involved seems much simpler and I'm afraid of making mistakes going the weighing route, especially when I start tapering down further.

No reason why you can't go the liquid route. Few things. Don't switch at this point. Changing format can be destablising so you want to do it from a place of stablity and perform a crossover taper to get you there. It won't be a waste of money to get a set of scales, as scales are really useful when on liquid to help make up smaller doses, this means you can make a dose even everyday if you want so it isn't stored at all and is fresh, whilst not wasting pills :)

First things first grab yourself some scales. Gem-20 from amazon or eBay is perfect for the minute, particularly if you are going to switch to liquid to actually taper.

Hope that helps.

I would assume that the "dark glass jar" thing is to avoid UV degrading the potency of the dose, but I think if you're not storing it for long periods and it's out of direct sunlight it will be fine.

17 minutes ago, Luke said:

I would assume that the "dark glass jar" thing is to avoid UV degrading the potency of the dose

That is correct

3 hours ago, Chippy said:

Hey @SarahMc sorry for the delay in getting to this.

Please don’t apologize Chippy, this wasn’t urgent and you are already doing so much!

3 hours ago, Chippy said:

No reason why you can't go the liquid route. Few things. Don't switch at this point. Changing format can be destablising so you want to do it from a place of stablity and perform a crossover taper to get you there

Ah ok, thanks. I’ll wait until I’m stable to make the switch then, and perhaps cross to liquid before I start actually tapering.

3 hours ago, Chippy said:

First things first grab yourself some scales. Gem-20 from amazon or eBay is perfect for the minute, particularly if you are going to switch to liquid to actually taper.

Ok, I’ll order these today. I have no idea how to use scales so I may reach out with a question or two when they arrive 😅

In terms of not wasting pills, I guess my concern was that if I’m cutting the pill in half and then shaving from one half to get the correct weight, I’d be left with a second half that’s too small. But I suppose I can just use that second half along with the shavings from the first half? Or is it best to crush the pill and weigh the powder?

2 hours ago, SarahMc said:

n terms of not wasting pills, I guess my concern was that if I’m cutting the pill in half and then shaving from one half to get the correct weight, I’d be left with a second half that’s too small. But I suppose I can just use that second half along with the shavings from the first half?

That's what I did. I just put the "leftovers" in a bottle for when I needed a smaller dose. As long as the pills don't expire I think you're good. But there are others here with more tapering expertise than I have.

2 hours ago, SarahMc said:

Ah ok, thanks. I’ll wait until I’m stable to make the switch then, and perhaps cross to liquid before I start actually tapering.

It would be your call which is at you went. It makes perfect sense to do the whole taper in liquid though, so crossover first.

2 hours ago, SarahMc said:

Ok, I’ll order these today. I have no idea how to use scales so I may reach out with a question or two when they arrive 😅

No problems at all!

2 hours ago, SarahMc said:

In terms of not wasting pills, I guess my concern was that if I’m cutting the pill in half and then shaving from one half to get the correct weight, I’d be left with a second half that’s too small. But I suppose I can just use that second half along with the shavings from the first half? Or is it best to crush the pill and weigh the powder?

Once you have an average pill weight you can then see how that pans out. Each pill varies a little so weighing is more accurate than a whole pill believe it or not!

Worse case you can do exactly as you said here use bits to make up a dose so no wastage.

You can crush 20 pills for example and make up multiple doses by putting the powder in empty capsule that you can buy online.

A few options.

10 minutes ago, Chippy said:

Once you have an average pill weight you can then see how that pans out. Each pill varies a little so weighing is more accurate than a whole pill believe it or not!

Worse case you can do exactly as you said here use bits to make up a dose so no wastage.

You can crush 20 pills for example and make up multiple doses by putting the powder in empty capsule that you can buy online.

Ok, thank you so much @Chippy. This makes a lot of sense, even if it also seems totally absurd to be put in this situation 😅 Appreciate you!