Harriet8: think I have withdrawal syndrome - seeking connection, hope and support for action I can take to heal

[Gridley]

2 minutes ago, Harriet8 said:

Are you able to live a functional life? 

Yes, I'm pretty functional.  I go down to the village for errands twice a week though I'm more comfortable at home. I can travel if necessary.   I really don't have the energy to do much gardening like I used to.  I play with the dogs.  I cook, though not as ambitiously as pre-WD.  Luckily my brain is working and I do a lot of reading and some meditating.

 

Thanks for asking.

[Harriet8]

Hello everyone,

 

I have posted recently in the Great Britain group but not on my thread here for while.  Frankly, I'm in dire straits, in swirling chaos, unable to get any ground beneath my feet.  My condition is very severe, but I've also been away from my home now for 16 months, and living between 2 places where I am currently (to avoid a demolition site), going through an agonising process of trying to find a doctor, which is in turn preventing me from being able to decide where to live - because I am disabled by my condition, dependent, therefore needing to work out where I can best meet my care needs...etc.  

 

My question today relates to Zopiclone: since October of last year, I have been holding on 0.58mg of Zopiclone.  I began reducing from 3.75mg in May 2019, and had intended to continue to complete the taper, but the doctor I began seeing at the time suggested I paused the reduction whilst we established what might be going on (because we had only just met and I have a long and complex history).  I began developing aggression which is totally out of character and becoming hostile in my behaviour.  I told this doctor about it several times, deeply concerned, explaining that it was SO unlike me and thinking it must be related to the Zopiclone reduction, or to holding on the 0.58mg.  He put it down to difficulties in my relationships with my parents and our not having enough space from each other.  I told him that I was certain this was not the case, that I am a therapist myself, that I know myself etc.... He did not take it seriously.  I have been trying to find another doctor since him.  It has been an absolutely exhausting process, and I remain without a doctor at all - apart from my parents' GP who currently just renews my prescription every 3 months.  

 

I will continue to seek medical help.  I just wanted to ask here whether others have experienced becoming aggressive and hostile when reducing z-drugs, or holding at a lower dose?  It is deeply concerning.  The fact that it has persisted for 9 months or so now is very worrying indeed.  I have tried reaching out left, right and centre for advice, but cannot access any help.  I am running out of meds, so need to request more.  I am wondering whether to pick up the taper again and begin to reduce by 10%.  In terms of my sleep, I wonder if it is having a paradoxical effect?  I take the drug (along with Pregabalin and Diazepam) at midnight.  But I am not able to sleep for 4 hours or so.  It is not helpful at all to have such a disturbed sleep pattern.  But I am more concerned at the moment about the hostile outbursts.  It is extreme surging energy as well, bordering on psychotic?  I cannot control it.  The most effective thing is to lie under a weighted blanket - but this is almost always after the outburst has happened.

 

I would be grateful for any feedback on this.

 

Thank you, and wishing you all well.  Trying to keep going, desperate to see one step I can take in some direction, instead of swirling around in chaos for what feels like forever....

 

Harriet8

[Altostrata]

Harriet, you are taking a handful of drugs, is that correct? How's your sleep?

 

If your sleep isn't disrupted, it's unlikely tapering zopiclone or the small amount of zopiclone you're currently taking is causing your emotional symptoms. If your sleep is disrupted, I would stop tapering zopiclone until it settles down.

 

Lack of sleep can make people cranky. When you say you are aggressive, what do you mean? Are you impatient? Are you voicing frustration? Are you irritable?

 

Please review possible drug interactions  and other prior posts in this topic. As noted before, you may be experiencing adverse effects from your drug cocktail, but since you insist you must take 3 of the 4 drugs, we can't do much to help you.

 

[Harriet8]

21 minutes ago, Altostrata said:

Harriet, you are taking a handful of drugs, is that correct? How's your sleep?

 

If your sleep isn't disrupted, it's unlikely tapering zopiclone or the small amount of zopiclone you're currently taking is causing your emotional symptoms. If your sleep is disrupted, I would stop tapering zopiclone until it settles down.

 

Lack of sleep can make people cranky. When you say you are aggressive, what do you mean? Are you impatient? Are you voicing frustration? Are you irritable?

 

Please review possible drug interactions  and other prior posts in this topic. As noted before, you may be experiencing adverse effects from your drug cocktail, but since you insist you must take 3 of the 4 drugs, we can't do much to help you.

 

Dear Altostrata,

 

Thank you so much for responding, and so promptly.  I really appreciate it, as I feel so alone with this, and in real crisis.

 

I'm taking Citalopram 40mg, Pregabalin 100mg (50, 25, 25), Diazepam 8mg ( 4 x 2 daily) and Zopiclone 0.58mg.

 

It is very difficult for me to get off to sleep.  I have given up taking the meds and then putting my head down for sleep, because lying there with ear plugs in with just my tormented mind for hours and hours is intolerable.  I take the meds at midnight, I then try and occupy myself for a couple of hours - often try and watch something on Netflix (which is terrible sleep hygiene but is sometimes the only way I can manage how horrendous I feel).  Then I'll try an audiobook for an hour or so.  Then I'll put ear plugs in and turn over and over for another hour or more?  So, I probably get off to sleep around 4am?  Depending on whether the people in the flat above wake me, I might sleep until 9 or 11.  I can't get a healthy sleep pattern.  But, having had hideous insomnia where I didn't sleep at all for a month - which was when I introduced the Zopiclone in 2018, I am grateful that I do get just about enough sleep, just in a very laborious manner.  Plus, I then end up taking my 9am meds at 11.30......knocking on 1pm meds till 2.30......etc.

 

No, this is definitely not lack of sleep crankiness.  I do feel permanently frustrated  and "urgent".  I am irritable and impatient.  But not mildly.  Volcanically.  And so rapidly.  This is very very serious.  I'm invading my parents personal space, I'm right up in their faces, effing and blinding, shouting, screaming, slamming doors, hurling abuse.  The kind of thing you might call the police over.  It is serious.  Very serious.   And really nasty aggressive text messages using awful language.  And it happens very very quickly.  Really rapid energy with my heart rate up.  And then it comes crashing down, as if I just ran a sprint.  Then I am shocked, mortified, in floods of tears.  I can't believe it has happened again.  I have never behaved this way in my life.  I'm a counsellor!  I'm trained in non-violent communication!  My greatest skills were my interpersonal skills.  It is true that I have also never been as stressed or traumatised for such a long period, or without a therapist or a single friend left to talk to.  And back living with my parents, and between 2 places (packing twice a day) because there is demolition all around their place (and I have severe hyperacusis, and a very fragile nervous system).   But I really don't think that could account for this.  And if it does, then I'm in big trouble of a different kind.  The only other possibility is the Pregabalin.  This has definitely affected my hormones.  It did from day 1 for me.  I have not liked its side effects from the very start.  I suppose it's possible that being on it for 18 months has caused this to happen?  I don't know.

 

I have been reviewing everything here, my whole thread, over the past few days, trying to pull it all together.  I'm trying to understand for myself what I think is happening to me, and have something to try and approach a medic with, if there is anyone left to approach.  It has been so awful, I have started to consider Dignitas, and feel more and more grief, despair, shame and ..... just absolutely traumatised by the whole thing.  I need to be able to put a stop to the total overwhelm and powerlessness, see which direction to go in, and be able to take the first step, and then the next..... I continue to circle around deciding where to live, and finding medical help.  And both depend on each other.  And round and round I go.  Because my condition is so severe.   In 10 years, my life has been decimated.  Only in this past year have I found out that this is all because of withdrawal - and FROM chronic overdosing and drugs which should never have prescribed together.  I have gone from a healthy 34-year-old counsellor, driving around, seeing clients, playing music, loving making food....."living", to: totally dependent for most all of my needs - all of my food, struggling to eat it, just about managing to wash myself every 3/4 days, extreme hyperacusis which leaves me feeling completely cut off from the world (with silicone in my ears much of the time), housebound, basically existing between bed and sofa, more and more bed recently, in the pitch black, in despair.  

 

It's a very bad situation indeed, and a condition I simply do not know how to address.  I desperately want to believe that there is a chance of regaining my functionality, of being able to be independent again, of feeling like a human being again, of engaging in life.  I don't know how many people on here are so disabled that they are rendered dependent on others for most of their needs?  It is particularly tough if you are single.  And my parents have been caring for me for nearly 2 years now and they are cracking under the strain.  I know how to address my trauma, what I would do if my body permitted it, to begin to build a life again and start healing.  What I really don't know how to do is address these wretched drugs, what on earth to do, still, about them.  It is clear that it is not my current drug regime that is responsible for my condition.  That's what is fuelling the despair.  Because I have no life like this.  Just relentless suffering.

 

I won't waste more of your time now.  I will try and complete my summary of what I have ascertained from my time on SA since I joined, and perhaps post that here.  Try and believe.  Try and keep going.  Try and hope..... I have got to take some action.  I can't continue as I am.

 

Thank you, Altostrata.  I feel like I've been a pain in the neck for you.  Actually, one of the ways my symptoms manifest since April 2018 is in the form of urgent appealing to others for help, in total desperation.  And being unable to take "no" for an answer.  Normally, I would ask for something once, politely.  And if the person said they couldn't help, I would thank them and move on.  Possibly, ask once more if it was something really important or difficult.  This is a whole other creature.  I would text friends 55 times a day.  Constantly at them.  One by one they had to sit me down and tell me to stop because they couldn't take it.  I wonder if this was - is (it's still happening, I just don't have any friends left as a result) - a form of akathisia in me?  I don't know.  Anyway, I apologise that you also have been on the receiving end of this.

 

Very best to you,

 

Harriet8

 

PS I don't want to take ANY of the drugs.  I couldn't want anything more than to be rid of the lot of them.  I only mean that I'm not sure that the tremors would be manageable without them, for instance, the muscle spasms, etc.

[Altostrata]

Harriet, you are taking a lot of drugs that singly or together might cause a paradoxical reaction such as sleeplessness. Your tapering zopiclone probably is a non-issue, you're taking so many "brakes", the paradoxical reaction probably will continue without zopiclone.

 

I understand the overall effect of all those drugs might make you feel very poorly.

 

We have discussed reducing your drugs, but as I said before, you have been adamant that you need 3 out of 4 of the drugs to control a neurological condition. While my personal amateur opinion is that your symptoms might all be from drug overload, if you actually have a neurological condition, you need the help of a neurologist, not an online support group.

 

I don't think there's anything else I can add.

[Harriet8]

13 hours ago, Altostrata said:

Harriet, you are taking a lot of drugs that singly or together might cause a paradoxical reaction such as sleeplessness. Your tapering zopiclone probably is a non-issue, you're taking so many "brakes", the paradoxical reaction probably will continue without zopiclone.

 

I understand the overall effect of all those drugs might make you feel very poorly.

 

We have discussed reducing your drugs, but as I said before, you have been adamant that you need 3 out of 4 of the drugs to control a neurological condition. While my personal amateur opinion is that your symptoms might all be from drug overload, if you actually have a neurological condition, you need the help of a neurologist, not an online support group.

 

I don't think there's anything else I can add.

Dear Altostrata,

 

Thank you.

 

Implication, probably no harm in re-starting Zopiclone taper? 10%, holding for a month?

 

Have you come across any other cases of the hostility I describe?

 

Lastly, I share your opinion: I also think my symptoms result from the drug overload.  It's only that if the drugs (and withdrawal from them) have led to such a severe state of brain and CNS, it sort of becomes a neurological condition, even though I - like you - believe it is crystal clear what has caused it.  The question is, what can I do about it? I'm compiling a summary now, for my own clarification and to see what options I might have.

 

Thank you for your patience and care.  It means such a lot.

 

Warmest wishes,

 

Harriet8

[Altostrata]

I cannot answer your questions further.

[LaurafromCT]

Hi Harriet,

 

Sorry you are having such trouble. I am in a similar pickle with taking drugs that make me sick. I will share my theory. I don't think anyone outside of myself can figure this out. I have asked my psychiatrist and he basically always says the same thing: trial and error. Which SUCKS. But as far as I can tell we need to do the following:

 

1. Keep diligent and detailed daily notes of symptoms

2. Keep a separate journal for overall thoughts and trends 

3. Make small incremental changes in a change and hold pattern.

3a. Only change one drug at a time

4. Have one person who you trust to help you with judgment calls on what to change and when

5. Trust your intuition. This can be augmented with prayer, meditation or quiet time. 

6. You are stronger than you think. Think of how far you have come.

 

Personally, and this is just me, I have lately been more aggressive with making changes (within the above limits). I was feeling so incredibly sick a few weeks ago that I figured that I had nothing to lose so I decreased one drug by 30%. And I didn't die. (yet haha) Still riding out that rollercoaster. I actually much felt better for a few days but now feeling bad again and tweaking things little by little. It's definitely not fun. But I am gathering data every day and learning what works and doesn't work. I know you're in a much more fragile state than I am so feel free to completely ignore all that.

 

I guess my point is that you have to keep trying by changing something. Just start somewhere, even if it's tiny. You have to make some progress towards getting off all those meds you're on. Just keep moving forward. 

 

Maybe this is bad advice. But I do stand by the part about keeping a log and trusting your intuition. People on these boards are very knowledgeable but you have so much going on that we can't have a clue what to do. I stopped posting my symptoms because nobody is going to have a clue why I feel full of bees or pop rocks or battery acid. All we can do really is support each other. 

 

Whatever you do don't give up!! Keep coming back and post about your progress. Good luck!!!

[LaurafromCT]

I don't think I am able to edit my post at this point but if I could I would delete the mention of decreasing 30%. I did do that but I am now feeling the consequences and I shouldn't have mentioned it to you Harriet. I truly wish I could help you even a little bit. 

[Harriet8]

Hi Everyone,

 

[I messed up and posted my message on the z-drug thread by mistake.  @ChessieCat kindly flagged.  I'm in such bad times, I've been erratic on the site and less present.  Not because that's what I want.  Just such extreme adversity due to meds and fallout from it all. ]

 

Wondering if anybody could give any opinions on my dilemma:

 

I have been holding on 0.58mg Zopliclone for 17months (because a silly doctor suggested I pause, and then sent me off on a wild goose chase), and then sadly my living situation has been constantly stressful and unstable, and I am very unwell due to failed withdrawals, basically bed/sofabound and still on 3 other drugs (Citalopram 40mg, Diazepam 8mg, Pregabalin 100mg).

 

I have reached the point where I want to complete the taper, especially as I want to begin to reduce the Pregabalin I take and it feels ridiculous to keep ordering 0.58mg of Zopliclone and embark on a taper from Pregabalin.

 

I am able to sleep, thankfully, although getting off to sleep is difficult.  I am not so concerned about insomnia, although maybe I should be (even at this dose?).  I am more worried about any other effects because my nervous system is so fragile.

 

The guidance at the top suggests 25% reductions per week.  That would be awesome.  But I fear that could be too big a cut, too regularly.  I find myself considering so many options: ranging from 10% per month, to 25% per week.  And, given that I am on 0.58mg as my (now) starting point, I don't know how concerned/careful I should be.

 

Does anybody feel in a position to guide me at all?  I get my drugs compounded and so I plan to order a batch of a good number of reductions.  

 

Final question, what would the jumping off point be?

 

Thank you all.

[Shep]

On 1/29/2021 at 5:23 AM, Harriet8 said:

 I find myself considering so many options: ranging from 10% per month, to 25% per week. 

 

Considering how long you've been on these drugs, I would go no faster than 10% per month. 

 

On 1/29/2021 at 5:23 AM, Harriet8 said:

Final question, what would the jumping off point be?

 

You could aim for .375 mg, but it really depends on your symptoms. You're on a number of other sedating drugs, so they may be what's helping you sleep at this point. 

 

Please also make sure you're using good sleep hygiene when coming off any sleep drug.

 

Tips to help sleep: so many of us have that awful withdrawal insomnia

 

Non-drug techniques to cope with emotional symptoms

[Harriet8]

Dear Shep,

 

Thank you for replying.

 

It feels tough to go that slowly because my concern is that the Pregabalin is doing quite a lot of damage.  So I had hoped to go a bit faster.  But I really appreciate and value your opinion.  Could I clarify a couple of things:

 

1. If I'm now "starting" at 0.58mg, and not the original dose of 3.75mg, will it still be having that much of an effect?  Is your main concern about insomnia returning or of other withdrawal symptoms?  I personally don't think the Zopiclone is helping me to sleep now at all.  I feel the sedation of the other drugs a little for a short time when I take them.  It seems to me that, for now (fingers crossed), I am managing to get enough sleep without the drugs really contributing much to this.

 

2. If I only had to get to 0.375mg, 10% per month would be fine.  I had in mind that I needed to get to 98% of the original dose which I worked out to be 0.08mg.  Could you explain how to make decisions re when to jump off?  According to Ashton, I believe I could jump already at 0.58mg.  I didn't think this was right for me.  If I did 10% reductions, it would only take me 5 months to get to 0.375mg.  But to get to 0.08mg would mean I can't touch the Pregabalin for over another year.

 

Thank you.

[Shep]

A lot of people find Ashton's jump off rate to be too high. She advised stopping at 1 mg Valium, which is equivalent to about .667 mg of zopiclone. 

 

Your current dose of .58 mg zopiclone is equivalent to about .39 mg Valium.

 

My recommendation of .375 mg zopiclone is equivalent to about .25 mg Valium, which may be a more comfortable stopping point.

 

But again, it really depends on your symptoms. Some people can stop a bit higher and some a bit lower. 

[Harriet8]

Dear Shep,

 

Thank you so much.  I really appreciate it.  I have been in extreme adversity and sadly remain that way, with no secured living arrangements and back in family of origin trauma.  This has added hugely to difficulties in taking care of my condition.  And I'm sad and frustrated that it has disrupted my involvement here on the forum.  So, I really feel grateful to you for not.....well, sort of, just giving up on me!  I'm very conscious of not being the active peer I would like to be, and want to be, giving as well as taking, if I could only get to a secure living situation, and out of permanent prolonged crisis in that respect.  Because I also can't really address my meds properly in such instability.  I imagine I am not alone in this, especially in current global challenge.

 

Because my research and files are all inaccessible due to the above, would you be willing to remind me - if you can - where the 98% jumping off point comes from?  Have I got this right?  I'm sorry if I'm being a bit obsessive.  I'm just trying to gather and recall and remind myself of all the learning I had gleaned.  I thought the jumping off point for all meds was 98% of the original dose.

 

Thank you again.  In such tough times, and extreme isolation, I really appreciate your taking the time here for me.  It means a lot.  Thank you.

[Shep]

This may help:

 

When to end the taper and jump to zero?

 

You'll notice some of the more experienced staff members in that thread mention the individuality of this process, so I wouldn't go by any hard and fast rule about a certain amount or percentage. Your symptoms will be your guide. 

Edited February 1, 2021 by Shep
fixed typo