Koala: Hello - I am very pleased I have found you

January 12

Okay. I may have done something unwise. Persuaded by concerned family that this is going on so long, and with the assurance of my psych that it would be safe, I have increased my dose to 10 mg.

I did this on Thursday and have taken 10mg for 3 mornings now.

I can’t say it’s made things clearly worse, because on both Thursday and yesterday in the evening things lifted and I felt mostly okay.

But because the wave is very intense I cannot help but be scared I have done something bad to myself. This of course is feeding the wave.

It would be reassuring to know this does not sound like some kind of kindling reaction.

January 14

How's the up-dose treating you, Koala? Has it been 5 days?

On occasions when I've considered up-dosing, I've just considered going back to my previous dose, so less than a 10% increase.

I appreciate when you're doing it tough; you're just desperate for relief. At the same time, the higher you go, the higher your starting dose when you recover and want to taper...slowly. Although, tapering is probably the furthest thing from your mind right now.

Wishing you well with your continued recovery.

January 15

Hi @Emonda

I am scared I’ve done something stupid with the up dose and am starting to panic a bit. Yesterday was fine, but I woke at 2.30am and perhaps just the worry of things has me in terror today. I think I need to reduce again. I discussed with my psych going back to 8mg tomorrow and holding there but I don’t want to destabilise myself further.

Are things worse in the last 5 days? The 3 days before were pretty bad too. Yesterday, day 4, was fine - almost no symptoms. I think some at least of what I’m feeling now is fear about the dose change.

January 15

I should add that something that got me worrying was noticing that I have little feeling in my genitals. But perhaps this is not surprising in the context of the past week.

January 20

Thanks for your reply LukeUK.

I think you’re right. Unfortunately I got despondent and scared by a particularly bad window that occurred when I didn’t have my usual supports around me. I was persuaded to up dose to a standard dose and then got terrified I had done terrible harm to myself (hence most recent posts). I have since reduced a little without any catastrophic consequence and am once again heading towards stabilisation, albeit at a higher dose than before. I have had 5 days of relative stability.

i am taking life very slowly and will continue to do so for a little while. I have some life changes happening and coming up and will need to be particularly kind to myself around them.

It would be great if someone could put a timeframe on things for me, but I know that is just not possible.

Thanks again for your reply.

January 30

Update: I have had relative stability for 2 weeks now. I say “relative” stability because it is by no means complete. I have had moments of terror and also something like depression. Right now as I write, however, things are pretty fine.

I have played with my dose too much and am now taking more escitalopram than I would like to be tapering from when I am stable again. Even so, when I get in a wave I still have a strong urge to up dose. This is based on knowledge that things felt fine for years when I was taking a standard dose and, in the past when i ran into AD withdrawal trouble without knowing that was what it was, I recommenced at standard dose and things settled down (though by no means straight away). But I am determined to hold at my current dose (8mg), and accept that there will be more waves, although hopefully not too many or too strong.

I am going to take a bigger break from work for the next 6 months, which luckily I am able to do (it hurts but it will not be catastrophic). During this time I will hand over most of my work to a trusted colleague and maintain only very minimal supervision. This will allow me to complete the study I was doing before withdrawal hit without becoming overwhelmed.

This has been and is a very difficult period in my life, but hopefully I am learning things and strategies that will ultimately make me better, stronger and more compassionate.

Thank you to those of you who have responded to my posts and questions.

I will update from time to time.

January 30

Hey Koala,

Only last night, I was wondering how you were doing. Thanks for the update.... I will read it again after work and reply properly.

3 minutes ago, koala said:

Update: I have had relative stability for 2 weeks now.

Good news.

Emonda

January 31

9 hours ago, koala said:

I have played with my dose too much and am now taking more escitalopram than I would like to be tapering from when I am stable again.

It's not easy, especially when well meaning friends and family think ADs are the answer to everything. When you are stable, and some months have passed, you are now better informed to taper successfully.

9 hours ago, koala said:

I am determined to hold at my current dose (8mg), and accept that there will be more waves, although hopefully not too many or too strong.

Good to read. As you now know, windows and waves are just part of the process to healing.

9 hours ago, koala said:

I will update from time to time.

Please keep us posted on your progress.

February 19

Hi @Emonda - only just saw your last post now. Sorry for not acknowledging this before. I am grateful for your posts.

This is difficult. I keep feeling like I’m through the trouble and then hit a wave. For me, waves generally mean strong fear - physical feelings of fear and frightening thoughts particularly about mortality and of all the things needed to sustain life running out or collapsing. These are all difficult to live with. All I can do is remind myself that only days before mortality and climate change etc did not induce terror and neither will they again in a day or two. My insomnia gets worse in waves and that certainly does not help.

As my trouble has gone on now about 5 months - with some good periods - do I conclude that reinstatement hasn’t worked? Is that what the moderators would say?

Perhaps it makes no difference. I still have to wait for stability right? There’s no other strategies likely to bring this about sooner?

It makes me terrified of ever trying to stop again.

Right now, back to walking like a zombie along the river and trying not to engage with my thoughts.

February 20

9 hours ago, koala said:

Sorry for not acknowledging this before

All good 👍

9 hours ago, koala said:

I keep feeling like I’m through the trouble and then hit a wave.

Sounds just the windows and waves to me.

9 hours ago, koala said:

fear and frightening thoughts

I know I've given you the links before, but is it worth reading this again? Emotional Spirals

I have waves of fear at times. I am fearful about things only a few days prior weren't even on my radar. Your experience sounds quite common on this journey.

9 hours ago, koala said:

As my trouble has gone on now about 5 months - with some good periods - do I conclude that reinstatement hasn’t worked? Is that what the moderators would say?

I know of someone on here that took 7 months to stabilise.

Reflect on where you were 5 months ago to now; there's been improvement, right? I read from ChessieCat (not active on here anymore) recently that you need to look at how far you've come, not how far you have to go. I found that helpful in my own situation.

9 hours ago, koala said:

I still have to wait for stability right? There’s no other strategies likely to bring this about sooner?

I'd be patiently waiting....there are no shortcuts, sadly.

Hope this helps.

Emonda

February 20

Thanks for your reply. I will look again at the emotional spirals thread to see if there’s any more pearls of wisdom to absorb. The best thing I’ve found is long slow walks ideally with talks to a trusted and supportive friend - I am very grateful for the one or two who have been unconditionally supportive.

Another crap nights sleep, but I’m feeling much more like myself this morning. Such a relief every time. The waves can feel almost like psychosis sometimes (or what I imagine psychosis to be like). My perception can be so altered and everything starts to feel threatening and alien. It’s a bit like circling around the earth and having to keep faith that just down there there is a planet where you can breathe and be nourished and be safe - having to have faith that you will be back there again. Luckily the worst of these times are usually brief and are happening a lot less often.

February 20

1 hour ago, koala said:

The best thing I’ve found is long slow walks ideally with talks to a trusted and supportive friend

This is brilliant. I do likewise.

1 hour ago, koala said:

Another crap nights sleep

Melatonin helps some with their sleep.

1 hour ago, koala said:

Luckily the worst of these times are usually brief and are happening a lot less often.

This is positive

February 20

1 hour ago, Emonda said:

Melatonin helps some with their sleep.

Not so much help for me sadly.

March 5

Just checking in. I admit I am feeling a bit despondent. I have been taking 80% of a standard dose for 6 or 7 weeks now. It is over 5 months since my ordeal began. I have known weeks of stability in there and have even felt good - sometimes for a couple of weeks. But I am still getting waves of fear (but nothing at the level of terror for six weeks or so now) but also sort of confusion and disintegration - that sort of lack of reality - that last on and off for days. Even though I am taking 80% of a dose, is this still linked to withdrawals? It’s just hard to understand what is happening - what sort of rebuilding is still needing to happen - it’s not like my nervous system is having to adjust to an absence of the drug. I feel frightened and as time goes by I feel like people are giving up on me. I don’t trawl through lots of other people’s accounts, because I find this triggers fear. But it would be great to know that my experience is not that unusual and will pass.

March 8

I’m not sure if I’m using this site properly. I would love some advice from moderators in response to my post above. Should I be requesting this somewhere else? On a different thread? I’m just a bit confused about stabilising after reinstatement. What I’m trying to get clearer is whether I’m still experiencing withdrawal symptoms, or whether I genuinely have some kind of ongoing treatment resistant anxiety disorder. Obviously no one can give me a diagnosis. But what would be really helpful would be to know whether my experience - that despite reinstatement stability can take 5 or 6 months or more to achieve - is shared by others. I guess I am looking for a reason to think that my fear symptoms are going to end. Hoping to have some help and thanking in advance.

March 12

Hi Koala,

You are posting in the correct spot. I've been away for a few days, and the team of volunteers is very small.

On 3/8/2024 at 11:22 AM, koala said:

But what would be really helpful would be to know whether my experience - that despite reinstatement stability can take 5 or 6 months or more to achieve

Plenty of others have taken longer than you to stabilise.

Reflecting on your first post some months back, you've seen reasonable progress, right?

March 13

Hi Emonda - thank you for your message. I am grateful for all volunteer efforts.

If I am not taking unusually long to stabilise after reinstatement that is very useful to know. I am aware that PWS can last longer but wasn’t sure what the usual experience was for people reinstating. Yes, there have been real improvements overall. This wave period has lasted almost 2 weeks though (with short periods of relief) and that makes it harder to believe in the improvement.

I have been 8 weeks on 8mg. I am wondering about an increase.

March 13

15 hours ago, koala said:

I have been 8 weeks on 8mg. I am wondering about an increase.

Why not draw a line in the sand, give yourself another 2 or 3 weeks and reassess? You've seen improvement.

I recall when you increased previously, you later regretted it.

March 14

I think you’re right emonda. Like many here I am just finding this about the hardest thing I have had to go through in such a sustained way.

The good news is that I have been experiencing less of that awful gripping terror. The more recent waves have been less about that and more about mood swings and being weepy.

Amongst all this though, the insomnia has been getting worse. I am just wide awake for a lot of the night. I have just had another night with maybe 3 hours sleep.

I have quit my work to give myself space to stabilise. I also recommenced study that I had found enjoyable. I am now doubting that I can keep going with that. It is very hard hanging like this.

I have been reading more on this forum again. There seems to be some suggestion that reinstatement/updosing can be activating for some. I wonder if this is what’s happening for me and my sleep?

March 15

Hi Koala,

I am from Australia too. I have just been reading your thread and thought I would respond. Last year I tapered too quickly (incorrectly myself and bad GP advice) and in September ended up with severe withdrawal symptoms. In October I ended up in hospital with high blood pressure (didn’t link it to withdrawal at the time) where they loaded me with tons of drugs including anti nausea, anti anxiety and sleeping tablets which looking back would have further destabilised me. When I got out of hospital I panicked and went up to my full dose from 10mg to 20mg of Paroxetine which I have been on for 27 years. Again this probably destabilised me further however taking the advice of the moderators on this site I have held for 4 months and my feelings of dread and chemical anxiety have significantly decreased. Yes I still have minor sleep disruption and anxiety symptoms in the morning but they are much milder. The symptoms I have left that are still unpleasant are head and upper back pain but I am hoping they will improve soon. Unfortunately the process is not linear but looking back I am definitely much better than I was in relation to chemical fear and anxiety. Stabilisation can take far longer (my withdrawals started at the end of September) than we would like or thought possible but is DOES happen… Please feel free to PM me anytime.

March 15

Thanks for your message xcaretuk. It sounds like you’ve been through the wringer. I’m glad you’ve seen improvement in some areas. I have too. I just didn’t expect such a long journey after reinstating. This takes a lot of patience!

March 15

2 hours ago, koala said:

Thanks for your message xcaretuk. It sounds like you’ve been through the wringer. I’m glad you’ve seen improvement in some areas. I have too. I just didn’t expect such a long journey after reinstating. This takes a lot of patience!

It certainly does!

March 24

Just posting an update. I have just had 9 good days, and am now in a bit of a wave. This mostly means worse sleep and the now familiar fear returning. Truth is I felt it starting to seep back in at times yesterday but was able to manage it. It’s very disappointing but I’ll just have to do my best with it. Maybe it will be a short one.

March 25

4 hours ago, koala said:

Just posting an update. I have just had 9 good days, and am now in a bit of a wave. This mostly means worse sleep and the now familiar fear returning. Truth is I felt it starting to seep back in at times yesterday but was able to manage it. It’s very disappointing but I’ll just have to do my best with it. Maybe it will be a short one.

Hi Koala,

So sorry you are feeling like this. I think 9 good days is a positive. I would be kind to yourself while going through this wave and keep reminding yourself that you had 9 good days so you will get them again. 🌸

March 25

Thanks @Xcaretuk. Hope you’re okay.

On a slightly positive note, I see a psychiatrist who this morning showed me his copy of the Maudsley deprescribing guidelines. I had only a quick look, but they appeared impressively detailed with a range of tapering plans. Great to see this out there and I’m pleased I’m seeing a doctor who cares. When I’m ready I’ll have a good look at the recommended slow plan with him.

March 25

37 minutes ago, koala said:

Thanks @Xcaretuk. Hope you’re okay.

On a slightly positive note, I see a psychiatrist who this morning showed me his copy of the Maudsley deprescribing guidelines. I had only a quick look, but they appeared impressively detailed with a range of tapering plans. Great to see this out there and I’m pleased I’m seeing a doctor who cares. When I’m ready I’ll have a good look at the recommended slow plan with him.

That’s so good to hear about the Psychiatrist having the Maudsley Guidelines. 🌸

March 25

3 hours ago, koala said:

On a slightly positive note, I see a psychiatrist who this morning showed me his copy of the Maudsley deprescribing guidelines.

That's great news.

I bought myself a copy and have enjoyed what I have read so far.

11 hours ago, koala said:

Just posting an update. I have just had 9 good days

You've got to celebrate 9 good days, Koala 🎉

Yeah, the waves are not nice at all, but 9 good days is awesome news!

March 25

Thanks Emonda. Yes, we do have to remember to celebrate the good times on this journey. And I certainly was celebrating each good day as it arose last week. There will be more and more of them.

March 26

What we’re all going through is miserable. It is so hard when you’re in these waves to be able to make contact with the sense that there is something good and precious in life. The only reality I can find in my experience at present is fear and insecurity and a feeling like I’m in an alien world. And yet just a few days ago everything felt right and safe. I was looking forward to the Easter break but now I am back to just getting through the day moment by moment. Obviously I knew pain in my life before - I didn’t accept a script for antidepressants for no reason. But I do not believe I ever felt this way other than in the wake of quitting them. The waves do pass and eventually there will be stability. I wish this for everyone using this site.

March 26

1 hour ago, koala said:

And yet just a few days ago everything felt right and safe

It sounds just like the windows and waves to me, and I can relate completely to what you are saying.

In my experience, the windows have become longer, but the waves are still just as intense. The fear that was not there only days prior hits so hard (normally in the days following a reduction in my medication), but it seems to pass quicker these days. I seem to be comfortable enough with the process...at the moment.

I've been at this process for two years, and it gets better, mate.

1 hour ago, koala said:

I was looking forward to the Easter break but now I am back to just getting through the day moment by moment.

The weather looks good for the Easter break. Make sure you get out and about every day. Go for a walk with a friend/family member that understands.

1 hour ago, koala said:

Obviously I knew pain in my life before - I didn’t accept a script for antidepressants for no reason

Yeah, same. I was in a dark place when I first took them, but, what I've experienced to get off them...wish I never took them.

1 hour ago, koala said:

The waves do pass and eventually there will be stability.

100%

March 26

BTW: how do you measure 8mg?

Are you 100% consistent and accurate?

Same does, same time, each and every day?

Sticking to the same manufacturer of the drug?

March 26

I take a liquid form of Lexapro (the only AD available as a liquid in Aust I think). I measure it out carefully with a 1ml oral syringe (0.4ml because the liquid is 20mg per ml) taking care to get rid of air bubbles. I take it at 8am - or within a 30 minute window of 8 am. I have not missed any days, although once I forgot until after 9am. So yes, I am being pretty consistent about it.

Thanks for your messages Emonda. It’s good to know you’re not alone with this stuff isn’t it.

March 30

sh*tty day yesterday in which I found it hard to find any sense of myself apart from the fear. In those times I find it is difficult to believe in getting over the this time - difficult to believe that the fear is not all there is. Luckily it finally started to lift around 6pm after talking to a friend who has been a real rock for me through this. When the wave hits it’s so important not to lose faith that it will end.

March 31

7 hours ago, koala said:

sh*tty day yesterday in which I found it hard to find any sense of myself apart from the fear. In those times I find it is difficult to believe in getting over the this time - difficult to believe that the fear is not all there is. Luckily it finally started to lift around 6pm after talking to a friend who has been a real rock for me through this. When the wave hits it’s so important not to lose faith that it will end.

Hi Koala,

Yes I must admit I have felt like that over the last few days again. It’s such a roller coaster and I think all of us feel like this intermittently. I agree we need to try and keep faith, easier said than done some days I know…

April 20

I have been reading James Nestors book Breath and this inspired me to make a point of long slow nose breathing with full exhales. I’ve been making an effort to do this as I go about all activities including exercise. I’ve also been doing some sessions with an app which simply sets a rhythm for your breath to follow. Anyhow, I have found this useful, particularly around bedtime, and thought others might too. I’ve also found that nose breathing felt a little restrictive at first my nasal airways have been gradually opening more.

April 20

1 hour ago, koala said:

I have been reading James Nestors book Breath and this inspired me to make a point of long slow nose breathing with full exhales. I’ve been making an effort to do this as I go about all activities including exercise. I’ve also been doing some sessions with an app which simply sets a rhythm for your breath to follow. Anyhow, I have found this useful, particularly around bedtime, and thought others might too. I’ve also found that nose breathing felt a little restrictive at first my nasal airways have been gradually opening more.

Thank you Koala I will look into this 🙏

Koala: Hello - I am very pleased I have found you

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