Nikki74: Lexapro mirtazapine diazepam akathisia

[Nikki74]

Thank you @Boris

 

Kind of you to write. Yes I’ve tried vaping and gum, both made me worse. It’s like any change at all is bad.

 

so I feel stuck.

 

Ive had akathisia without a single break for 35 months. 

 

I don’t think anyone can help me as it’s been so long. And I react so badly to the smallest reduction. It becomes utterly horrific. 

 

Apart from quitting smoking, I don’t know what else to try. The akathisia makes me smoke! No one can understand this unless they’ve experienced this.

 

Thank you for writing, Nikki

 

 

[Frogie]

Nikki:

 

2 hours ago, Nikki74 said:

Apart from quitting smoking, I don’t know what else to try. The akathisia makes me smoke! No one can understand this unless they’ve experienced this.

 

 I know exactly how you feel. I smoked for 40+ years. The akathisia is horrific during wd. I’m going through some internal shaking right now. At one point I was smoking almost 2 packs a day. I tried Chantix. I had to take it twice but it worked for me. I don’t know if you could try it? The only thing it did was give me very vivid dreams. It’s the hardest thing in the world to do. But I’ve been off for 4 years now.

 

I wish you all the luck in the world to stop smoking and with your taper. You have had it rough.

 

 I have to tell myself look how far I’ve come, not how far I have to go. 
 

Hope you feel better soon.

 

Take care,

 Frogie xx

[brassmonkey]

Something that most doctors won't tell you and advertising avoids telling you is that Chantix is just a brand name for Bupropion or Welbutrin. It is a low dose of an antidepressant that many of our members are having a very had time getting off of. I very happy that it has helped Frogie, but SA can not and will not recommend taking this drug for smoking related WD.

[Frogie]

2 hours ago, brassmonkey said:

Something that most doctors won't tell you and advertising avoids telling you is that Chantix is just a brand name for Bupropion or Welbutrin. It is a low dose of an antidepressant that many of our members are having a very had time getting off of. I very happy that it has helped Frogie, but SA can not and will not recommend taking this drug for smoking related WD.

@brassmonkey

 

I’m sorry I ever mentioned it. I had no idea what it was. It did work for me and hubby.

 

 I would never recommend anything like that to anyone if I knew what it was.

 

 I hope I didn’t offend anyone.

 

Frogie xx

Edited May 21, 2020 by Frogie

[brassmonkey]

No problem Frogie-- you didn't actually recommend it, you just said it worked for you. Which is fine. But because it's really an SSRI as a moderator I have to say something on behalf of the site. No harm, no fowl.

[Nikki74]

9 hours ago, brassmonkey said:

No problem Frogie-- you didn't actually recommend it, you just said it worked for you. Which is fine. But because it's really an SSRI as a moderator I have to say something on behalf of the site. No harm, no fowl.

Thank you Frogie and Brassmonkey.

 

I had heard of it and remember a smoking cessation worker telling me about it a few years ago. She’d said it can cause depression and I looked it up. I would not have taken it. I know Frogie too was just trying to help. Thank you for explaining Brassmonkey.

[ChessieCat]

Hi Nikki,

 

Just a thought, please do your research.  I'm under the impression that nicotine patches provide a low dose of nicotine throughout the day.  It could be that nicotine gum provides too much in one go.  Also, the patches might be able to be cut down.  I haven't used them or know of anyone who hasm.  Maybe someone here might know more about them.  You could check out this topic:  smoking-cessation-nicotine-e-cigs

 

And you could ask your doctor.

 

 

[Nikki74]

2 hours ago, ChessieCat said:

Hi Nikki,

 

Just a thought, please do your research.  I'm under the impression that nicotine patches provide a low dose of nicotine throughout the day.  It could be that nicotine gum provides too much in one go.  Also, the patches might be able to be cut down.  I haven't used them or know of anyone who hasm.  Maybe someone here might know more about them.  You could check out this topic:  smoking-cessation-nicotine-e-cigs

 

And you could ask your doctor.

 

 

Thank you for commenting ChessieCat.

 

Everyone is being so kind in coming forward with suggestions and yet I must sound I’m not taking them on board when I say nope can’t do that.

 

Unfortunately even before wd I couldn’t tolerate the patches as they caused itching. It’s a listed side effect. Just not doable. 

 

I had a read of the thread you gave me a link to. 

 

Mixed experiences as with everything. 

 

I feel my only option is the one to cut down. Taper. 

 

But i do this, very strictly, by writing down the times I had a cigarette which helps me to see if I’m sticking to things. So I get down to 8. Then after a while symptoms get worse because of a cut or wave on a wave, and it creeps up again and I’m back to 12. This is better than 20-26 I was smoking in 2017-18 but it’s not quitting.

 

Can anybody tell me if there is any hope for me at all regarding the relentless akathisia now 34 months since cold turkeys never ever having gone? It gets so severe with a reduction and I don’t know what to do anymore. I don’t.  Because I’m truly feeling that I’m an exception and this is it. I am terrified. I have fought with every sinew I have to keep going. Thank you. 

 

Does my recovery hinge on quitting smoking? 

 

@manymoretodays 

 

Edited May 22, 2020 by Nikki74

[Altostrata]

Please discuss smoking cessation in this topic

 

[Nikki74]

Log for @manymoretodays

11am wake with adrenaline surging, panic heart ponding and forced to move (akathisia)

 

severe diarrhoea 

 

11.15 2.5mg escitalopram, some agitation comes down 

 

11.30 .25mg Klonopin 

some more reduction in adrenaline, panic, agitation 

 

12 noon unable to stay still so get up again and smoke, then lie down, full body and mind agitation continues 

 

12.30 eat eggs and rice crackers

body is shuddering all over, lie down crying with the intensity

 

Suddenly get explosive level akathisia and start pacing. Can’t sustain due to weakness and have to sit with legs juggling up and down. 

 

2pm movement akathisia stops, inner continues, lie exhausted.

 

put tv on for distraction 

 

3pm .25mg Klonopin 

3.15 tears, feel like disappearing into a hole of nothingness, panic, heart rate increases

3.30 feel drunk, drugged, awful empty feeling. Cry curled up on sofa.

 

4 cigarette, heart rate increases 

4.30.  able to watch some tv

 

5 cig craving. Resist, eat a carrot stick instead.

 

Feel drowsy but also a bit calmer 

 

6.30 sudden onset of 

Terror

Visual distortions 

feeling of going to scream

feeling of rage

fear of doing something violent, horrific 

Mind racing too fast to feel any control 

stuttering speech when try to tell carer

see strange shapes in things on tv

feel like disappearing down a hole

horror

tree outside seems to be swaying in slow motion

panic

feel will pass out

carer sits down in peripheral vision and looks like a completely different person, like a hallucination 

Start crying because it’s all so horrific 

Feel like body will start convulsing 

 

Massive cig craving

desoerate to eat

 

Have Cig (been 2.5 hours since had one, don’t normally leave it so long but was trying to cut back)

Eat meal carer has made

7.10 Symptoms come down and I am absolutely void of all strength. Lie in a blanket on sofa, feel paralysed by the weakness. 

 

7.15 .28mg Klonopin 

Don’t feel much. Yesterday started pacing after this dose. 

Shocked by how severe the mental symptoms got there. 

 

Takes an hour before I can even move my arms.

 

8.30 manage to go to bathroom

have cigarette

lie down and stare at tv

 

9.30pm talk to friend via video message, not much strength to talk,  we then stay on not talking but knowing each other is there. 

 

Feel like a zombie but the inner restlessness and mental restlessness means not relaxed.

 

Eat potato chips 

 

11.00 last cigarette, 10 small half size cigarettes today. 

 

11.30 go to bed

12 midnight 15mg Mirtazipine 

Have to Eat a lot 

2am ish fall asleep 

...........................

 

Cutting down cigarettes is very very hard and it scared me what happened after I held off today. 

 

In past i went 12 hours and experienced such intense paranoia and panic, I caved in and smoked.

 

I cut .001mg from .047mg escitalopram weight pill on 16th April. 

 

What shall I do about tapering to move forwards? 

 

 

 

 

 

 

Edited May 23, 2020 by Nikki74
Extra detail and notes at the end

[Nikki74]

Extreme Terror (with additional symptoms) 

 

Just wanted to post about the terror I get. It can surge up at any point of the day or evening, I often wake with it. I had it for months after the cold turkeys. It never left completely but lowered when I took clonazepam, yet within a week or two that was causing it when I took it so I tapered some of it. And it’s got more prominent the past year with escitalopram reductions. Becoming worse between 3mg down to 2.5mg.

 

It grips my mind and body. It feels like I’m going into a psychotic kind of state where I feel extremely detached from everything. My heart pounds, I shake, I feel I will run screaming, or attack myself in some way, intrusives of this and at worst, urges totally against my will that I have to fight,  (I hope that’s ok to share, I have a wd friend who has same tapering valium and has the akathisia too). I have an intense fear of sharp objects, even non sharp like pens! No I’ve never had this in my life ever before these drugs. It feels like I’m falling into a hole, away from reality, the akathisia inside is intense, everything is too much (sound, movement, my surroundings). I repeat to myself that I’m safe. I hug myself which then makes me cry. 

 

My head squeezes. It’s hard to catch my breath. I can only hide in my bed or under a blanket, in a ball. 

 

It is terrifying. As terror suggests! 

 

All of what I’ve described above went pretty much completely (not the akathisia, the terror etc) for a couple of weeks in December and again mid March until about week 3 in this reduction (though in the three weeks it had surged here and there). 

 

I could do with some normalising of this. Or anyone who has it like this. And what this means for my path coming off these drugs. As I’m back to where I was after cold turkeys and before I took the clonazepam. The clonazepam can sometimes cause this symptom after dosing, it’s not consistent though. 

Edited May 23, 2020 by Nikki74

[Repent]

Youre not alone. i have it too. The akathisia inside. All day, everyday. Sometimes it gets so intense im starting to either run in circles til i collapse or i scratch myself to feel something on the outside.. and crawl to a Little ball. Terror haunts me aswell. I would say those two along with the flu/virus/infection-feeling goin on nonstop are my worst 3 sympthoms. So, i just wanted to let you know youre not alone in this. Im almost 21 months from ads and benzos. But we will make it! We will! 

[Nikki74]

Thank you for replying and identifying and I’m so sorry you have this lot too!

 

i’m 34 months out from ct off ssri and pregabalin then short use Zopiclone but trying to get off ssri, Mirtazipine and Clonazepam. Taking years. One cut sends me into worst state of all this stuff which I had already before going on clonazepam. Praying I can survive the tapers to healing 💕 

Got to make it!! X

 

Edited November 3, 2020 by ChessieCat
removed name

[Repent]

2 minutes ago, Nikki74 said:

Thank you for replying and identifying @siwoue and I’m so sorry you have this lot too!

 

i’m 34 months out from ct off ssri and pregabalin then short use Zopiclone but trying to get off ssri, Mirtazipine and Clonazepam. Taking years. One cut sends me into worst state of all this stuff which I had already before going on clonazepam. Praying I can survive the tapers to healing 💕 

Got to make it!! X

 

Its so strong to taper! I can only imagine the shock after each drop. I wish i knew about tapering.. but Im too impatience as a person so even if i knew i prob would have done all cts anyhow ^^  Hows pregabalin working out for you? Do you take it for nervepains, im guessing you have them too? I got a lots of them, moving around everyday. Stabbing in my inner ear, head, eyes, tooth, hands. lungs or whereever. 

[Nikki74]

47 minutes ago, siwoue said:

 

Its so strong to taper! I can only imagine the shock after each drop. I wish i knew about tapering.. but Im too impatience as a person so even if i knew i prob would have done all cts anyhow ^^  Hows pregabalin working out for you? Do you take it for nervepains, im guessing you have them too? I got a lots of them, moving around everyday. Stabbing in my inner ear, head, eyes, tooth, hands. lungs or whereever. 

I wish I’d known to taper too. I just did what my Dr said and stopped 5 years of ssri and pregabalin and I’ve been in hell since, nearly three years. I was put back on ssri, was given benzos and was already on Mirtazipine so I’m in cold turkey and trying to taper for past two years and only dropped 2.5mg ssri. Now can hardly cut a pin prick without more torment for weeks on end. Never get stable. Akathisia never goes. 

 

Sorry so im not on pregabalin that was a ct. big mistake. 

 

Yeah i I have a lot of pain like you xx

[Nikki74]

Dear @Altostrata

I watched your video and read your story. Thank you for your ongoing campaigning.

 

I know you are very busy and I hope it’s ok to write and ask you some questions. 

 

Because I went through numerous cold turkey stops of drugs (2016 and the most in 2017) and have continued to suffer relentlessly since with akathisia, and a multitude of other symptoms including terror (which I wrote about on my thread yesterday) I wonder what my way forward is regarding tapering.

 

The reinstatement of the escitalopram a month after stopping in 2017 (my Dr put me back on, before I knew anything about withdrawal and he was unaware) did not halt my suffering and was further worsened by halving the dose on the instruction of a psychiatrist because at that point they wanted me to stop the escitalopram again and the Mirtazipine so that I could start on Sertraline. 

 

It was at that point with halving the reinstated 10mg and cold turkey stopping the Zopiclone I’d been on for 8 weeks (and suffering severe side effects from) that the akathisia became severe and I started to google what I was experiencing, and found SA. 

 

The damage had been done.

 

it has been nothing but severe since. I have never stabilised.

 

i know you don’t have time to look at everyone’s cases in depth but as you say you’re one of about 5 experts on this in the world, I wonder what you can say about this terrible situation I continue to exist in?

 

I wanted to ask also about recovery, you said in the video everyone recovers. What might be my path to recovery? Is it to get off these drugs (slowly) or should I be not tapering at all until such a time that I barely have any symptoms and the akathisia has gone?

 

Finally, my pattern with any reduction I make goes like this:

make reduction

 

feel uptick within 24 hours

also feel some improvement 

 

gradually things get more difficult

until suddenly at week 3.5-5 into the cut things tip over into extremely severe akathisia, terror etc

 

this continues into weeks 8-12 until things start to return to the miserable baseline of constant but more tolerable akathisia, less or no terror etc. 

 

Why is this? If I cut 5% or a bit more or half that. It’s the same pattern.

 

I wonder if you have insight into why this is the pattern please?

 

In practise it means that I won’t get off the drugs in my lifetime. 

 

As time from the cold turkeys goes on, is this likely to improve? 

 

Kind wishes

Nikki 

[Altostrata]

On 5/10/2020 at 12:12 PM, Nikki74 said:

@Altostrata, I feel such strong cravings and agitation that I feel ‘forced’ to smoke. Then I get some relief from the desperate need to smoke but  worse generally.

 

I feel massively toxic from it. Everyday I long to kick it but it’s the first thing I crave once I’m awake and the akathisia is surging.

 

I've been known to have terror and then it’s come down when I’ve smoked. 

 

I know that that sounds contradictory. I want to quit. But it’s like I’m driven to by the akathisia.

 

Right now I’m two days into severe migraine, nausea and worsened fatigue and smoking makes that worse.

 

 

The problems with smoking are still in effect, Nikki. It seems to make you worse.

 

If you are smoking several times a day, this sets you back several times a day.

 

There's a possibility you are experiencing interdose withdrawal from clonazepam, drug-drug interaction between mirtazapine and clonazepam, or you are sensitive to mirtazapine's active metabolite, desmethylmirtazapine.

 

What is your clonazepam schedule? It looks very irregular. Att: @Shep

 

As you know, daily symptom notes are what we use to unravel adverse drug effects. Yours would have to include each cigarette. But this would be difficult to interpret with adverse reactions to the cigarettes you're smoking X times per day.

[Nikki74]

1 hour ago, Altostrata said:

 

The problems with smoking are still in effect, Nikki. It seems to make you worse.

 

If you are smoking several times a day, this sets you back several times a day.

Thank you @Altostrata

Ok.  Yes. If I try not to smoke, the symptoms get worse eventually. So then I smoke.

1 hour ago, Altostrata said:

There's a possibility you are experiencing interdose withdrawal from clonazepam, drug-drug interaction between mirtazapine and clonazepam, or you are sensitive to mirtazapine's active metabolite, desmethylmirtazapine.

 

I have wondered about Mirtazipine. When I went through the change in generic, it was like I was on a completely different drug. It revved me up, I hardly slept, I’d wake up with vomit I’m my mouth two hours after falling asleep, the akathisia went to extreme levels. That was in February. 

1 hour ago, Altostrata said:

What is your clonazepam schedule? It looks very irregular. Att: @Shep

 

11.30 am 

3/3.30pm 

7/7.30 pm 

 

it is squeezed into too short a time. 

 

The mirtazipine drugs me until 10am or later. So my morning drug doses are pushed to late morning.

1 hour ago, Altostrata said:

As you know, daily symptom notes are what we use to unravel adverse drug effects. Yours would have to include each cigarette. But this would be difficult to interpret with adverse reactions to the cigarettes you're smoking X times per day.

So shall I do the daily symptom notes? 

[Altostrata]

You have hangover from mirtazapine? Yes, please post daily notes.

[Altostrata]

Please post those daily notes and respond in your benzo topic

 

[Nikki74]

46 minutes ago, Altostrata said:

You have hangover from mirtazapine?

Yes, until the akathisia fills me. 

 

I can feel feel the akathisia ‘filling’ my body from about 10am, sometimes later, but cannot move or wake properly.  Then normally around 11am I am shocked awake by it, sometimes shuddering and I involuntarily shout out, then I’m frantic with it. But yet in a very confused state sometimes until 1pm.

 

Also a note on taking it. 

I take it at midnight often, sometimes 11.30. I used to take it maybe 10.30pm I think. But regardless of when I take it, I do not get drowsy until 1.30am sleep around 2am. The inner and mental akathisia persists until that point when I’m knocked out.

 

I also have to eat a lot of snacks after dosing it to get it to ‘work’. 

 

 

46 minutes ago, Altostrata said:

 

Yes, please post daily notes.

Ok. Will do.

[Altostrata]

It appears to me your main problem is the clonazepam, Nikki, as it has been for at least a couple of years. Please respond in your benzo topic.

[Nikki74]

Daily Notes Monday 

@Shep

10am start to feel adrenaline surging up my back. But still drowsy. 

10.50 whole body is agitated and I must move. Heart racing. Have to rush to bathroom but lose control of bowels before can get there. This happens often.

11am Take 2.5mg escitalopram 

very slight lowering in akathisia, lie down, but uncomfortable inside with inner akathisia. 

11.30 .25mg clonazepam 

Agitation of the inner akathisia lowes briefly then surges again. Have to pace. Heart racing, whole body in high akathisia. Mind racing. 

12.15 small cigarette. Feel some buzzing I’m limbs. 

12.20 sit in lounge. Heart racing. Lie down. Tv on, mind non stop, inner akathisia non stop but not as severe as was just a little earlier. 

12.40 Gut noisy, acidic and churning (this has been for years everyday since CTs)

12.55 wave of shivers through body

Obsessively check phone, rewind tv, ocd bad and mental akathisia. No peace. Try breathing. Too agitated to be still.

1.15 small cigarette as so restless and can’t focus on anything.

1.20 Make eggs and rice crackers. Eat but too weak to sit up and eat it all. Lie back down. Inner akathisia continues. Stomach churning and gurgling.

1.30 Akathisia getting very bad. Panic, shivers, chest is bursting with agitation, adrenaline surging through me, heart pounding.

1.40 whole body now vibrating,feelings of rage, intrusive thoughts of attacking self, heart racing, burning inside. Head racing.

2.30 small cigarette 

Ocd, head just wont stop. 

2.45 Things calm down suddenly. Not gone. But much lower.

3.30pm .25 Clonazepam 

4pm panic inside

4.15 head squeezing 

4.30 small cigarette 

5.15 terror and shaking starting to emerge. Can’t stay still.

5.20 small cigarette in panic 

5.35-6.05 panic, terror, intrusives, si, akathisia bad, fear of objects, mind racing, vibrating inside, crying frantically, reaches a massive peak at 6pm now wailing, mental torment, head squeezing, terror etc.

6.05-6.50 exhausted. Terror stopped, eat dinner made for me by carer.

6.55 terror increases again

small cigarette 

terror, panic, agitation continues then 

7.25pm comes down a few notches 

7.30 .28 clonazepam 

8pm heart pounding and akathisia agitation increasing. 

8.30 small cigarette 

Able to watch some tv

9.15 crying 

9.45 small cigarette 

watch some tv bit feeling very down, another traumatic day, still inner and mental akathisia but lower.

 

11pm small cigarette.

Watch tv, exhausted but never restful.

Midnight go to bed take 15mg Mirtazipine, eat several healthy snacks, try to watch silly stuff on Twitter, drowsy by 1.30, sleep by 2am. 

 

I have Tuesday to post next and then today’s 

 

[AlaskanGlacier]

On 5/23/2020 at 10:04 AM, Nikki74 said:

Extreme Terror (with additional symptoms) 

 

Just wanted to post about the terror I get. It can surge up at any point of the day or evening, I often wake with it. I had it for months after the cold turkeys. It never left completely but lowered when I took clonazepam, yet within a week or two that was causing it when I took it so I tapered some of it. And it’s got more prominent the past year with escitalopram reductions. Becoming worse between 3mg down to 2.5mg.

 

It grips my mind and body. It feels like I’m going into a psychotic kind of state where I feel extremely detached from everything. My heart pounds, I shake, I feel I will run screaming, or attack myself in some way, intrusives of this and at worst, urges totally against my will that I have to fight,  (I hope that’s ok to share, I have a wd friend who has same tapering valium and has the akathisia too). I have an intense fear of sharp objects, even non sharp like pens! No I’ve never had this in my life ever before these drugs. It feels like I’m falling into a hole, away from reality, the akathisia inside is intense, everything is too much (sound, movement, my surroundings). I repeat to myself that I’m safe. I hug myself which then makes me cry. 

 

My head squeezes. It’s hard to catch my breath. I can only hide in my bed or under a blanket, in a ball. 

 

It is terrifying. As terror suggests! 

 

All of what I’ve described above went pretty much completely (not the akathisia, the terror etc) for a couple of weeks in December and again mid March until about week 3 in this reduction (though in the three weeks it had surged here and there). 

 

I could do with some normalising of this. Or anyone who has it like this. And what this means for my path coming off these drugs. As I’m back to where I was after cold turkeys and before I took the clonazepam. The clonazepam can sometimes cause this symptom after dosing, it’s not consistent though. 

 

I'm sorry you're dealing with this terror feeling. I haven't had it in 4 years since I was in the middle of Valium w/d, but now 11 months off Prozac, the past few weeks I've had it most of the time. It's arguably one of the worst sxs tbh, as it is almost completely incapacitating. My vision gets blurry and distorted and dark, almost like I'm on the brink of some psychotic state (even though I'm not). It usually accompanies a severe anxiousness/fear of being in danger of dying. Like if someone were to break into your home and shove a gun in your mouth and tell you they were going to pull the trigger. Pure terror. No reason. It's just there and you have to sit with it and try to move about the day the best you can. I get very OCD about my health when it happens, as that goes with the fear of imminent death and doom. It makes everything seem scary and horrible. It's honestly one of the most intense sxs I've ever had. I'm sorry. It's so hard. Just got to keep waiting it out and realizing we are not in any danger. 

[Wania]

Nikki how have You been doing?

[Wania]

Guys do You know how Nikki is doing?

[Biloelagirl89]

On 9/30/2017 at 4:52 PM, Nikki74 said:

I think I could cope if it weren't for the extreme restlessness/ akasthesia. I'm sure it is akasthesia. I've had it now for months and all I want is to be able to take something to stop it. But I know this is it now for however many months/ years. It's a waking nightmare. I really appreciate all your support thus far so early in my time on here. I wish I'd known about this stuff before June when I so abruptly stopped the pregabalin then the lexapro. 

 

I'm holding out to take my Mirtazipine. Resisting a diazepam.

 

i just want some let up. 

 

 

Do u still u still have the akathisia? Are you better now?

[Nikki74]

I’ll post 24 hour notes tomorrow morning, beeb keeping them since woke today.

 

Things were generally showing signs of improvement in the akathisia til recently. Now very bad again. 

 

To clarify about clonazepam situation: 

 

started to get severe dosing reactions - within ten minutes - - to every dose from Saturday 30th January.

 

I realised after a few days it coincided with when I started a new box of clonazepam.

 

Friday 5th Feb I decided to stop using that new prescription and use some leftover pills from previous boxes. Slowly the severe reactions to every dose, additional symptoms like diarrhoea and violent shaking have improved but I’m still suffering badly not directly connected to taking the dose. 

 

I have received a replacement prescription as complained to TEVA uk that I was having a severe reaction. Dr sent new script and I have new box from a different batch number to the ‘bad box’.  I’ve not yet started to take these as am too scared to but must use soon as limited leftover supply.

 

TEVA uk package their clonazepam either in a white Teva livery box, or a gold Almus livery box. 

 

The contents are identical - sane leaflet, same foil packs, TEVA on the packs, same pills in the packs.

 

Ive had both the white had gold boxes over the past year.

 

This time it was a gold box that was v v bad, I’m now taking TEVA leftover pills from a white box. 

 

The bad gold box was replaced with another gold box but different batch number, I’m extremely worried about commencing use of the pills in this new box given what happened with the one I started on 30th Jan. 

 

TEVA assured me the contents of their white box and the Almus gold box are identical. That it could have been a bad batch. 

 

So I’m currently in limbo scared to start the new box in case it’s as severe. 

 

Will post notes in the morning once i have 24 hours.

 

Thanks 

 

 

 

 

[Nikki74]

I’ll post 24 hour notes tomorrow morning, beeb keeping them since woke today.

 

Things were generally showing signs of improvement in the akathisia til recently. Now very bad again. 

 

To clarify about clonazepam situation: 

 

started to get severe dosing reactions - within ten minutes - - to every dose from Saturday 30th January.

 

I realised after a few days it coincided with when I started a new box of clonazepam.

 

Friday 5th Feb I decided to stop using that new prescription and use some leftover pills from previous boxes. Slowly the severe reactions to every dose, additional symptoms like diarrhoea and violent shaking have improved but I’m still suffering badly not directly connected to taking the dose. 

 

I have received a replacement prescription as complained to TEVA uk that I was having a severe reaction. Dr sent new script and I have new box from a different batch number to the ‘bad box’.  I’ve not yet started to take these as am too scared to but must use soon as limited leftover supply.

 

TEVA uk package their clonazepam either in a white Teva livery box, or a gold Almus livery box. 

 

The contents are identical - sane leaflet, same foil packs, TEVA on the packs, same pills in the packs.

 

Ive had both the white had gold boxes over the past year.

 

This time it was a gold box that was v v bad, I’m now taking TEVA leftover pills from a white box. 

 

The bad gold box was replaced with another gold box but different batch number, I’m extremely worried about commencing use of the pills in this new box given what happened with the one I started on 30th Jan. 

 

TEVA assured me the contents of their white box and the Almus gold box are identical. That it could have been a bad batch. 

 

So I’m currently in limbo scared to start the new box in case it’s as severe. 

 

Will post notes in the morning once i have 24 hours.

 

Thanks 

 

 

 

 

[Nikki74]

Prologue to daily notes:

 

I use scale of 1-10, 1 being very low (never got to that level yet), 10 being the worst possible. 

 

Constant for 42 months - baseline of restlessness and agitation accompanied by subjective fear as a minimum, no peace or stillness in brain but level can be around a 3-4 as opposed to consistently at a 7+, having to move about every hour or so, then lie down again. Inability to engage in normal activities like reading a book, doing creative things, social interactions other than brief exchanges. Talking increases agitation, inner vibrations, fatigue, and can trigger migraines. 

 

Notes

10am wake up after 8 hour sleep, with moderate agitation 6 and have to get up and move, eat cracker before dose

 

10.30 lexapro 2.5mg 

             Agitation reduces to 4

 

11am 0.25 clonazepam 

      Eat cracker

 

11.15am as drugs hits brain, feel ‘locked in’, stare into space, while mind whirs with intrusives 

Sneezing 

 

11.40am have to move due to agitation, like earlier when woke up

 

12noon eat rice cakes, lie down, have to be on phone and tv on due to mental and inner agitation, level 4.

Tv on, have to keep pausing and rewinding (ongoing ocd-like symptom that fluctuates)

 

12.45pm adrenaline feeling whooshing up from base if back, bladder urgency, stinging, increasing then have to jump up and dash to bathroom then dash around doing things, intense agitated panicked feeling, level 6, not quite active akathisia level. 

 

1.15 sit down but still racing inside and outer shaking

 

1.20 able to lie back but heart racing and level 5

 

1.30 onwards Rises again and quite frantic level 7 akathisia 

2pm down to a 5-6

 

2.15 worse and can’t sit still, gasping and shaking level 7-8

 

2.40 can’t contain it, pacing, feels like I will start to scream level 8

 

3pm level drops and collapse, down to a 5, still feel wired, bladder urgency 

 

3.15 .25 clonazepam 

3.45 lie in state of shock and exhaustion 

4.05 jump up and move

4.15 sneezing

4.45 bladder urgency

5 exhausted and feeling sick of this existence 

5-8pm ongoing restlessness, need to urinate, unable to focus for long on tv or phone, going between the two and moving around as needed. Exhausted. 

8.15pm .28 clonazepam 

Sinking, disappearing zombie feeling for 30 minutes while muscles twitch. Right side leg, arm squeezing numbness. Brain feels like it’s being squashed.

 

8.45 sudden agitated gut hunger, must eat urgently. This happens often after this dose.

 

9.25 sneezing, eyes watering 

 

10.20 sneezing, think I am coming down with a cold, first in years. 

 

Generally restless all evening. Yet completely wiped out on my back between moving around every hour or so. This is a baseline thing, no peace yet no strength.

 

A lot of bladder urgency (ongoing since last September)

 

12midnight 15mg Mirtazipine, have to eat 6 crackers, bit of apple and potato chips as drug causes sudden extreme hunger. 

2am fall asleep 

 

9.20am wake up in shuddering panic and agitation level 7, bowel and bladder urgency, need to be on phone looking at things as mind won’t stop.

 

10am 2.5mg lexapro 

Heart rate increases slightly 

Panic level comes down to a 4

 

10.20 agitation level 5

 

 

 

 

 

 

 

 

 

[Nikki74]

Thursday notes continued 

 

10.50am .25 clonazepam 

 

11.20 explosive reaction- pacing and shaking, shivering, like being powered by high voltage electricity, bladder and bowel urgency  

 

12 level reduces, sit down exhausted and stunned 

Agitation level 5 ongoing 

 

2pm  bit lower, 3-4 level 

 

2.15 sneezing (I don’t have a cold, this sneezing is new though) 

 

3.10pm .25 clonazepam 

Some of the zombie feeling 

 

4.30 head bobbing side to side 

 

6pm agitation increased to about a 6 - not helped by stressful situation at home (well, I’m always at home)

 

8.15 .28 clonazepam 

Ate some chicken with it in hopes it would ‘cushion’ the dose.

 

8.30 sneezing and eyes a bit watery. 

 

9pm Slight spike in agitation and food craving as gut feels agitated - very common with this dose. 

Agitation lowered and remained level 3 the rest of the evening and was able to hold a conversation, had a few laughs, feeling relatively sane and at ease (in my scheme of things) - this is rare!

 

12 midnight 15mg Mirtazipine 

Eating crackers, apple, crisps for my Mirtazipine ‘picnic’ I always have to have. 

 

1.30am waiting for sleep, usually comes by 2am

 

[DataGuy]

Sorry you've had to go through this @Nikki74, but glad you had some temporary relief and normality yesterday. We will try to find a solution for you. I'm sure there are a few things you haven't tried yet. Maybe we can make your days a bit less hellish. I will get back to you soon with something to try. Stay strong 💪

Edited February 12, 2021 by DataGuy

[Nikki74]

10 hours ago, DataGuy said:

Sorry you've had to go through this @Nikki74, but glad you had some temporary relief and normality yesterday. We will try to find a solution for you. I'm sure there are a few things you haven't tried yet. Maybe we can make your days a bit less hellish. I will get back to you soon with something to try. Stay strong 💪

 

Thanks so much @DataGuy

after so many years and the level of damage I have, I mean no part of my body or mind is functioning normally, I don’t know what to do anymore. It’s been nearly 4 years of akathisia, agitation, disability, fearing for my life, and pure survival everyday. 

 

A new thing i now have is the sneezing and eye watering reaction to when I dose the clonazepam. It’s so minor compared to other things but adds to the red flags about the clonazepam yet my experience of tapering anything has been extreme akathisia, terror and mental torment ongoing.

 

Been housebound since the start too.

 

Ive yet to start on my new box of clonazepam and terrified it will be adverse (using up old stock currently) like the previous box which made the akathisia life threatening. 

 

Am exhausted from no rest for so many years and seems no way out of this mess.

 

Thanks again, Nikki 

[DataGuy]

Can you remember exactly when the akathisia began, @Nikki74? Has it gotten worse over time? Is there any point since it began where it got better? Do you remember what potential causes there were for the akathisia getting better or worse? Has any of the shifting around of dosing schedules helped? 

[Nikki74]

45 minutes ago, DataGuy said:

Can you remember exactly when the akathisia began, @Nikki74? Has it gotten worse over time? Is there any point since it began where it got better? Do you remember what potential causes there were for the akathisia getting better or worse? Has any of the shifting around of dosing schedules helped? 

I think there was a ‘prodrome’ phase between summer 2016-mid 2017 with all the drug messing that set me up for it, where I had the beginnings of it.

 

I stopped Lyrica May 2017 and was getting restlessness then from a few days out of quickly stopping lexapro June 2017 is when I entered withdrawal and the inner restless agitated feeling started and has never left.

 

it got progressively worse as more drug messing ensued:

 

mirt doubled 

mirt halved

during which time regular  valium use started

lex reinstated at 10mg

same time I started Zopiclone 

 

lexapro halved and Zopiclone stopped ct (I had terrible adverse effects on top of things with that drug)

 

By September 2017 when that last stage happened 👆I knew I had severe akathisia (by researching online)

 

I then held for 4 months and suddenly the akathisia went to extreme levels January 2018. It was suicidal level. I ended up in ER and not believed but given clonazepam 

 

that stopped the movement and frantic distress but caused terrible depression and intrusives and crying like my brain was crying in response to taking each dose

 

Soon the doses became explosive and I had to start reducing it

 

But then had to stop as the akathisia (and mental torment with it) was becoming severe again

 

I then had to start reducing the lexapro as the 5mg doses suddenly became adverse - like instant serotonin Syndrome 

 

The whole time I was tapering it from mid 2018 to April last year I was getting worse and worse akathisia, terror, other movement issues, and about 50 other symptoms, terrible mental racing and intrusives, violent feeling rage, just horrific stuff.

 

so I’ve been holding since then

 

the severe level started to come down around September 

 

things that make it worse:

any change - brand of any drug, going from pill up water dosing, moving clonazepam dosing times, chemicals or foods, often dosing the clonazepam can cause a massive worsening til it then dies down, sometimes all doses, sometimes none, sometimes occasional; if I eat something with the dose it can reduce this effect but not always. Tapering made it worse. 

 

Or it will just randomly get worse very suddenly. 

 

Ps I now sneeze and feel I’m having a histamine reaction every time I take the clonazepam.

 

Nothing helps it. Only long hold has reduced the constant severe level but not consistently and it’s still there all day. 

 

I firmly believe if i had never been given gaba drugs after those CT stops summer 2017 I would not be still suffering like this.

 

[Nikki74]

I will add that supplements, hormone changes, make it worse too. 

 

I feel trapped on these drugs.

 

i never micro cut before, only cut and hold, and even a 2% reduction brings months of worsening.

 

I used to experience a thing where I’d cut and feel a bit better in some ways (clearer mind, reduced agitation level at times, then around week 2-3 things would go off the charts and just keep getting worse for 3 months or so.