Nikki74: Lexapro mirtazapine diazepam akathisia

[manymoretodays]

Hi Nikki74, @Nikki74@DataGuy

 

Good to see you back Nikki!

And I'm just transferring some of the posts, well most of the recent posts from your benzo thread, on back to this one, your main thread as we are looking at the whole picture, and gathering more recent data.

 

Nikki, If you'd like to do another day of notes that would be grand, and then just post them all in one response block.  I'm in and out today, but had a heck of a time with the last set, trying to figure out which day was which, as the times just flowed into a second post.

 

Sometimes using military time helps, or just noting the date, day clearly at the top, and then you can note a.m. or p.m. after the times.  Or maybe it's just me.

 

And so you have transitioned to liquid Lexapro now?  Or did I read that wrong?

And if I read correctly, it sounds like you had some good help, but they are no longer available to you, due to their own WD being bad........and sorry about that, that's hard.

And then I read about your worries on manufacturers as well.  And try, try to breathe easy, if it is the same manufacturer, just a different lot #.  I know you have had difficulties with this kind of thing, but realistically, this may all go just fine.  Or minds can do funny things to outcomes.  So......my fingers are crossed, and all intentions toward successful transitions to new batches of your drugs/meds.

 

Happy Valentines day too!  ❤️❤️🤗

 

L, P, H, and G,

mmt

Edited February 14, 2021 by manymoretodays
grammar

[Nikki74]

On 2/11/2021 at 10:29 AM, Nikki74 said:

Notes

 

Wednesday 10th February

 

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 

 

[Nikki74]

 

 

 

On 2/12/2021 at 1:26 AM, Nikki74 said:

Thursday 11th February 

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

10.50 .25mg clonazepam 

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

 

12 noon level reduces, sit down exhausted and stunned 

Agitation level 5 ongoing 

 

2pm  bit lower, 3-4 level 

 

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

 

3.10pm .25 clonazepam 

Some of the zombie feeling 

 

4.30pm 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)

 

8.15pm .28 clonazepam 

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

 

8.30pm  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

 

 

[Nikki74]

Dear @manymoretodaysthank you for writing!

 

I’ve quoted my notes separated into each day above. I will add a further day. Not been taking notes today so will do tomorrow.

 

Yes, that’s right, I transitioned to water lexapro dosing end of June 2020. So I now get two equal doses from one diluted pill. It was a shock of a crossover and took til September to adjust. Though new symptoms appeared around that time that haven’t left. However, my daily diarrhoea (of two years) started to remit once I was on the water. I have to eat before the dose to ‘slow it down’ or cushion it as it was hitting me very fast.

 

The clonazepam box brand batch affair is a mystery, but I started on a new script 30th January, a branded box with Teva inside that I’d had before and it caused such severe increase in akathisia from every dose (plus violent shaking, return of diarrhoea and more) that I had to stop using it - it was dangerous level - and request a different box. I’ve not started on it yet, it’s same outer brand as ‘bad one’ (Teva inside) but different batch no. Currently using pills from a little stockpile I have from the other Teva packaging til brave enough to try the new box. 

 

Both have Teva inside! Teva UK send out their clonazepam in two different boxes - an Almus one or a Teva one. I’ve had both without having this issue before. So it’s shocked me a lot that this happened and fearful of new box. I simply wouldn’t be able to continue taking it causing that level of akathisia. 

 

I hope you’re ok, notes coming soon, N x

 

 

 

 

[Altostrata]

Nikki, haven't we been discussing a different schedule for the clonazepam since at least a couple of years ago?

 

You're still getting a paradoxical reaction from your clonazepam dosing. Nothing has changed over the years. Same deal as ever.

 

You will need to discuss your reactions to various brands of clonazepam with your pharmacist. They will need to see the boxes so they can trace the lot numbers. We cannot resolve that for you here.

[Nikki74]

5 hours ago, Altostrata said:

Nikki, haven't we been discussing a different schedule for the clonazepam since at least a couple of years ago?

 

Altostrata 

I addressed the we’ve been talking about changing dosing on my benzo thread. I said I realise this and if that’s the main feedback from me recent posts, I understand. I also explained before the extreme difficulty I had in doing this and how is worsened the akathisia. 

5 hours ago, Altostrata said:

You're still getting a paradoxical reaction from your clonazepam dosing. Nothing has changed over the years. Same deal as ever.

What would you suggest?  

Paradoxical reactions aren’t to do with the above schedule issue. I got them when I used to take .5mg at 10am and 6pm from early days on it. And it varies. 

 

As you point out, nothing has changed over the years, same deal, so what would be a suggestion regarding paradoxical drug reactions?

 

 

 

 

5 hours ago, Altostrata said:

You will need to discuss your reactions to various brands of clonazepam with your pharmacist. They will need to see the boxes so they can trace the lot numbers. We cannot resolve that for you here.

Understood. Teva recorded that box as a bad batch and took it back. I was writing it here because it’s frightening and support, understanding is hard to find in this experience. 

 

 

 

[DataGuy]

Thank you for the notes @Nikki74. A couple additional questions:

 

1. What supplements have you tried and which ones made you worse? How much worse?

2. Do you feel you are worse at any particular time of day? Any time of day when symptoms are typically less intense? Is there any consistent pattern throughout the day?

3. When was the last time you tried to reduce the Mirtazapine? 

 

I notice the akathisia started right around the time you began the Mirt. This drug has some odd properties. At higher doses the noradrenergic effect becomes dominant and it is more activating, while at lower doses the antihistamine effect is more dominant and it is more sedating. I think the inflection point where it becomes more sedating or activating can differ depending on the person taking it. I am wondering if, given your sensitive nervous system, the drug is having a more activating effect?

 

Other things can happen with this drug: interdose withdrawal could cause you to feel more agitated as the peak effect of the drug wears off (the peak effect should occur shortly after taking it). The drug can also cause akathisia itself, although that effect might be suppressed by the sedating effects it has initially. So while it may allow you to sleep, it could be making your days more hellish. I took Mirtazapine myself and had a terrible withdrawal. While I was reducing it, I often found that although larger reductions made it difficult for me to sleep, I often felt better with almost no sleep vs a full night of sleep at higher doses. The higher doses can cause dysphoria / akathisia that is a bit delayed and so difficult to connect to the drug. I also noted that I didn't have any agitation or akathisia when I started the drug, but it began some months afterwards and I had a very difficult time figuring out it was the drug that was causing it. The drug did seem to make me more irritable initially (which was odd because I was sleeping better than ever). 

 

I think at this point, trying to reduce mirtazapine might be your best avenue to make progress. It may even make you feel a bit better. What do you think, Nikki? That or making a concerted effort to quit smoking, which would remove a confounding factor and likely improve your health a bit. 

 

Here is an explanation of the drug effects: https://proceedings.med.ucla.edu/wp-content/uploads/2016/11/Dose-Dependent-Sedating-and-Stimulating-Effects-of-Mirtazapine.pdf

 

Edit: Another question I just thought of: what happened when you went from 15mg to 30mg of Mirtazapine? Then back down to 15mg? Thanks @Nikki74

Edited February 15, 2021 by DataGuy

[Nikki74]

45 minutes ago, DataGuy said:

 

1. What supplements have you tried and which ones made you worse? How much worse?

2. Do you feel you are worse at any particular time of day? Any time of day when symptoms are typically less intense? Is there any consistent pattern throughout the day?

3. When was the last time you tried to reduce the Mirtazapine? 

Thank you for your considered response @DataGuyand kindness. 

 

I’ll answer your questions in separate posts using this quote tool if that’s ok.

 

1. Pre cold turkeys in 2017, post the serotonin Syndrome caused by adding trazodone to the lexapro, I found any supplement caused worse anxiety - magnesium, b vits, vit c, omega oils, d vit, multi vits. Was perplexed.

 

Since being in wd, I’ve not tried supplements but found foods that have B vits added rev me up more, badly. I’m uncertain on D vit. I’ve not wanted to try any supplements as a result of this and how sensitive I was even before wd. 

 

Foods high in omega 3 like oily fish rev me up and cause some insomnia. Dark green leafy foods like spinach are also revving.

 

2. Waking is consistently very bad. I’ve never woken without extreme agitation, panic, and often terror, having to leap out of bed immediately since July 2017. Worse when tapering lexapro or clonazepam. 

 

It often remains very bad until maybe 3pm. 

 

Providing I don’t then get a bad reaction to clonazepam, things generally though not always, are ‘better’ after 4/5pm onwards. 

 

When tapering lexapro, it became severe all day til gone midnight.

 

this can still happen sometimes though not as often since I’ve been holding. And like I say it depends if the clonazepam goes crazy on me (after 8.15pm dose last night, terror kicked up 9-11pm)

 

3. I’ve never tried to reduce it. 

 

You observed the akathisia seemed to start around the time I was put on the mirtazipine - 

 

It’s difficult to say - my Dr gave it to me As I was experiencing such terribly anxiety and panic months into being on pregabalin given after serotonin Syndrome. I believe I had the beginnings of akathisia at that stage (before mirt) as it wasn’t any kind of anxiety I’d known before and was restless. I remember trying to increase pregabalin one day I’m April and instantly got the wanting to jump out of my skin reaction (now I know that was akathisia). I never stuck to the increased dose because of this. And the reaction came down but I was still full of chemical anxiety. 

 

The Mirtazipine calmed it down the instant I started on it. April 2017. 

 

Which is why my Dr said to just stop the lexapro and pregabalin. Utter disaster.

 

i do though recall having moments after starting 15mg Mirtazipine where I’d have dark intrusives. I’d wake with depression and also had one occasion where I lost my temper over something minor and it scared me, where I never lost my temper normally. 

 

 

You then asked what happened when I went from 15 to 30mg then back down again - 

 

The specifics are confused because I had just come off pregabalin and lexapro and was thrown into a severe withdrawal state which slammed me suddenly which included panic, paranoia, intrusives and restlessness (I recall getting v restless including legs the moment I started to reduce pregabalin). I called my Dr that day and he said double the Mirtazipine. So I did that night.

 

The next day I woke with a churning gut - which I still have to this day and is like the core of my akathisia. What I thought was restless legs, and leaping up out of bed needing to smoke continuously. 

 

Over the following month I ended up being given valium to use and referred to a psychiatrist. I was in severe withdrawal (though didn’t know it!). 

 

I halved the Mirtazipine a month later and at the same time was told to take 10mg lexapro and start on Zopiclone too and use valium more. 

 

I don’t remember anything improving from that moment, it just got worse. It was such a mess that everything blurred by that point.

 

 

Thank you for the info on the Mirtazipine. Very informative. 

 

i would be open to considering a very small reduction in Mirtazipine.

 

However my questions are- what if it makes my withdrawal worse?

 

if I end up losing my only sleep, my only break in non stop agitation and the akathisia gets worse, I’ll be up a certain creak and then what? 

 

Insomnia without akathisia is potentially almost bearable short term but insomnia with akathisia is not.

 

Thanks so much! N

 

 

 

 

 

 

 

[Nikki74]

1 hour ago, Nikki74 said:

The next day I woke with a churning gut - which I still have to this day and is like the core of my akathisia. What I thought was restless legs, and leaping up out of bed needing to smoke continuously. 

Just to note that the previous day was what I’d call day 1 of acute withdrawal, it hit me like a ton of bricks, overnight from a few weird symptoms and sense of restlessness to boom! The fact I doubled the Mirtazipine that night (after calling my Dr in supreme distress) collides with onset of acute wd so I don’t know if what I woke up with the following day after doubling dose, was on the cards anyway or was result of doubling Mirtazipine? 

[Nikki74]

Sorry to write so much.

 

interesting that peak is 90 minutes and that fits with when I finally get knocked out by it. 

 

Also interesting that half life is 16 hours - kind of fits with when my symptoms can come down (not so some days though, and certainly not when tapering has just made it unbearable all day).

 

so despite it knocking me out, it could be causing this non stop akathisia- agitation restlessness at lower level? 

 

Do you think there’s yet hope for me? 

 

I really appreciate your input on this @DataGuy

[DataGuy]

Yes, of course I think there is hope for you @Nikki74. We haven't exhausted all avenues. I think it is encouraging that you have never really tried to reduce the mirtazapine. It can be very insidious, since it is very sedating and does promote sleep, but the next day there can be a very big price for that sleep. However, the patient may not connect their feelings the next day to Mirtazapine, especially if they come on slowly and subtly over time and there are other confounding factors. So people can think it is helping them when in reality it is doing the opposite. 

 

I don't know if it is the main problem for you, but if you can make progress on reducing it without too much pain, it may open up other doors to reducing the other meds. However, it's still possible that it isn't the primary problem, so try not to get too discouraged if it doesn't work. I think we can hope it is, though. It would make things a bit easier. 

 

If reducing Mirt makes things worse, we can always go back. I think it is a good idea to start slow. And I agree, you don't want insomnia and worsening akathisia. These could be signs that the reduction isn't working. You'll have to rely on your ability to distinguish whether it is the reduction making things worse or something else. May be helpful to continue taking notes before, during and after attempting to reduce the Mirtazapine. 

 

I was also going to ask what your diet was like? If you have written that out before and it is pretty representative of how you are eating, you can just copy and paste it. If not, it's not anything urgent. @Shep had just expressed some concern that you weren't getting enough nutrition, and I agree, that is an important aspect. 

 

I will not always be on the site, as I have to work and am dealing with withdrawal of my own, but I will always reply eventually, it just may take a few days sometimes. Plenty of great moderators here though : )

 

 

Edited February 15, 2021 by DataGuy

[Nikki74]

@DataGuyand @Shep

 

First, thank you for your response dataguy.

 

Today has been brutal severe akathisia all day. 

 

Just to respond re diet. It’s v limited. Histamine issues.

 

My list of foods that meals are made from is:

 

Fresh beef, chicken, cod

 

potatoes, sweet potatoes, carrots, parsnips, peas, sweet corn, green beans

 

Half an apple a day (any more or any other fruit causes migraine)

 

rice

rice cakes 

eggs

sunflower oil for cooking 

sunflower spread (unfortunately the one I’ve beeb using throughout wd that used to just have Vit E supplement in it, now has A,D and B12 added and I can no longer use it; I searched to the end of the internet for a replacement without those added vitamins, no coconut as makes mouth itch, no preservatives etc and not found one. I have a couple to try, one with fava bean protein vit E and D, one with just vit E and a few preservatives; I’m worried I’ll be affected badly but suddenly not have vit E? The spread is an essential part of my diet and my only good fats).

 

That’s all I eat. 

 

Been gluten free for 14 years and dairy free in wd, can no longer tolerate.

[Nikki74]

Monday 15th February 

 

9.30 - terror, akathisia, DR, level 7

10 2.5mg lexapro 

Symptoms come down to a 5/6

11am .25 clonazepam 

11.20 body and mind explodes with level 8 akathisia and have to pace, crying and chemical terror.

Paced until 2.10pm

Collapse in exhausted yet still agitated state 

3.15pm .25 clonazepam 

3.40pm much more revved again,  have to move

Urgent peeing - about 7 times today so far 

4.40pm lying down exhausted but squirming 

5.15pm things drop down more level 5

6.30pm bit more agitated 

7.15 legs very agitated and moving around, feel like might start pacing, start kicking and bouncing legs 

7.30 legs stop kicking and bouncing 

8.15pm .28 clonazepam 

9pm onwards more agitated and panicked, restless, unable to focus on tv for more than 5 minutes 

11pm lowers

12midnight 15mg Mirtazipine 

2am sleep 

 

This has been a very bad day.

 

Tuesday 16th February 

 

9am abrupt wake up shaking, mind racing, akathisia, panic, distress, leap out of bed, bathroom 

Go back to bed, put on relaxing music and somehow manage to sleep an extra hour before I start taking doses. 

[DataGuy]

On 2/15/2021 at 6:52 PM, Nikki74 said:

First, thank you for your response dataguy.

 

Today has been brutal severe akathisia all day. 

 

Just to respond re diet. It’s v limited. Histamine issues.

 

My list of foods that meals are made from is:

 

Fresh beef, chicken, cod

 

potatoes, sweet potatoes, carrots, parsnips, peas, sweet corn, green beans

 

Half an apple a day (any more or any other fruit causes migraine)

 

rice

rice cakes 

eggs

sunflower oil for cooking 

sunflower spread (unfortunately the one I’ve beeb using throughout wd that used to just have Vit E supplement in it, now has A,D and B12 added and I can no longer use it; I searched to the end of the internet for a replacement without those added vitamins, no coconut as makes mouth itch, no preservatives etc and not found one. I have a couple to try, one with fava bean protein vit E and D, one with just vit E and a few preservatives; I’m worried I’ll be affected badly but suddenly not have vit E? The spread is an essential part of my diet and my only good fats).

 

That’s all I eat. 

 

Been gluten free for 14 years and dairy free in wd, can no longer tolerate.

 

Thanks @Nikki74. Sorry your diet is limited. So you have found you tend to react badly to foods high in histamine? I found that I tended to tolerate peaches well, early on in my withdrawal. Have you tried avocados or red bell peppers? Both have vitamin E. Bell peppers I think are Ok for histamine. Avocados are supposedly high in histamine, but would be interesting to see if you tolerate them. I found them to be ok. They also have plenty of good fats. 

 

Many dairy products like milk and cheese are also ok for histamine, according to this list: https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf

Might be a way to get some different nutrients. Have you ever tried an elimination diet to see what you can and can't tolerate? Ever tried intermittent fasting or a ketogenic diet? Is your weight ok (in the normal range of BMI)? I initially thought I had a problem with histamine, but it turned out after some experimentation that carbohydrates in general were a problem. I had particular problems with grapes, melons and blueberries (not sure why, used to tolerate these fine). Peaches, apples, cherries and nectarines were some of the fruits I tolerated best. 

 

How has the rest of your week been since Monday? Glad you were able to get an extra hour of sleep on Tuesday : )

Edited February 21, 2021 by DataGuy

[Nikki74]

On 2/21/2021 at 11:52 AM, DataGuy said:

 

Thanks @Nikki74. Sorry your diet is limited. So you have found you tend to react badly to foods high in histamine? I found that I tended to tolerate peaches well, early on in my withdrawal. Have you tried avocados or red bell peppers? Both have vitamin E. Bell peppers I think are Ok for histamine. Avocados are supposedly high in histamine, but would be interesting to see if you tolerate them. I found them to be ok. They also have plenty of good fats. 

 

Many dairy products like milk and cheese are also ok for histamine, according to this list: https://www.histaminintoleranz.ch/downloads/SIGHI-Leaflet_HistamineEliminationDiet.pdf

Might be a way to get some different nutrients. Have you ever tried an elimination diet to see what you can and can't tolerate? Ever tried intermittent fasting or a ketogenic diet? Is your weight ok (in the normal range of BMI)? I initially thought I had a problem with histamine, but it turned out after some experimentation that carbohydrates in general were a problem. I had particular problems with grapes, melons and blueberries (not sure why, used to tolerate these fine). Peaches, apples, cherries and nectarines were some of the fruits I tolerated best. 

 

How has the rest of your week been since Monday? Glad you were able to get an extra hour of sleep on Tuesday : )

Hello @DataGuythank you for your kind post and dietary suggestions.

 

I’m not sure of my weight, I’m tall and slim but do carry some extra pounds due to this drug situation. 

 

I’ve been and continue to be in the most severe state of akathisia, agitation, terror, si induced by the akathisia, urges, adrenal surges, intrusives, whilst being incredibly weak and dizzy to point of nearly passing out at times, since early February.

 

At 44 months since this all started and no windows yet, and the worst akathisia I’ve had consistently and with no pattern for a long time, I’m at a loss.

 

I fear and feel that I tapered the escitalopram ssri too low and I’m just not adjusting. It feels this could be a huge wave that’s hit me months out from those last cuts a year ago and subsequent water cross over end of June that was so harsh. 

 

Looking at my personal notes from 2019, I can see that I was in severe crisis tapering the escitalopram/ lexapro and yet continued to cut it as advised by people (not here) at the time. I believe I should have stopped at 3.25 or 3mg and held a year at that point. 

 

Im still suffering so much of what came to the fore even more during those cuts from 3 to 2.5mg. 

 

I can’t updose as I tried a year ago to reinstate a cut and it went very badly with the akathisia shooting up to unbearable levels, so I had to stick with the cut.

 

Im really at a loss to have akathisia this long and struggling to cope or see my path out.

 

I also developed severe histamine issues and gut issues, involuntary movements (head bobbing) and shaking during tapering those last few cuts from 3 to 2.5mg.

 

my sleep is no longer a given 8 hours on the Mirtazipine and the akathisia, terror etc can surge badly upwards at any time even at midnight. 

 

im currently very very slowly moving my benzo doses a bit further apart. 

 

I’ll post a new lot of daily notes.

 

my current dosing is 

 

9.45am 2.5mg escitalopram 

10.30am .25mg Klonopin 

3pm .25mg Klonopin 

8.30pm .25mg Klonopin 

midnight/00.30 15mg Mirtazipine 

 

sleep around 2am, wake 7.45/8.45am

 

I’m deeply concerned I tapered too low on the escitalopram in 2019/early 2020

 

I continue to have unpredictable and often adverse reaction to Klonopin 

 

mirtazipine is no longer keeping me asleep as long but does still work 

 

I feel like an extreme case wherever I look and don’t know my way to freedom and recovery.

 

Nikki 

[Nikki74]

Tuesday 16th March

7.45 wake with bladder urgency, lower back agitation and burning, akathisia surging, terror and panic.

 

Go to bathroom

 

Doze with sleep music on until 9.15, shaking, highly agitated and mind full of si intrusives and terror, can’t stay still

 

9.45 dose 2.5mg lexapro - slight improvement of symptoms but then they increase again after 20 minutes

 

Very weak, shaking, highly agitated and panicked, have to keep moving

 

10.30 .25mg Klonopin some minor relief, then 11 onwards akathisia, terror etc gradually worsens, in very bad state ongoing

 

3pm .25 Klonopin a bit more relief of sorts though hardly any

 

day continues as already described, hiding in my bed as body surges with adrenaline and agitation and mind in terror and si intrusives v v strong. Grunting and weeping from the intensity of the akathisia in my body, squirming around in agonising agitation.

 

surges and dips and surges over and over.

 

5pm so weak when try to walk I feel I will pass out, legs feel numb (been getting this more and this was always a benzo wd symptom when I used to taper it)  and like will give way, slump on stairs halfway down

 

7pm able to go downstairs for about an hour, tv on but too stimulating and terror and agitation increases so have to return to bedroom.

 

8.30pm .28mg Klonopin increase in panic, mental terror, si, adrenaline for an hour. Horrific and think must cut this drug! I always feel this after dosing it: I want off this drug! 

 

10pm able to venture downstairs again and watch 45 mins of tv but again the stimulation is too much and terror, panic agitation increases so return to bed with heated blanket and just hold on.

 

11.30pm less intense, go downstairs to gather foods for bed to help after dosing Mirtazipine (chicken, apple, crackers, boiled egg, potato chips). Feel best I’ve felt all day.

 

though other nights this can be a horrendous time.

 

00.15 15mg Mirtazipine 

1.30 am sleep 

 

Throughout day:

gurgling agitated gut just like I had after the cold turkeys in 2017 and pretty much all the way 

 

bladder urgency with lower back burning and agitation every 45 mins - this started and has fluctuated since last October. I don’t have an infection.

 

non-stop agitation and restlessness

 

[Nikki74]

Sorry @DataGuy

 

Writing a lot! 

 

I’ve not made a Mirtazipine reduction attempt yet. Things just so frightfully severe so, yes, I’m scared to try it!

 

I didn’t respond to food info and questions-

I found I can’t tolerate any dairy, no aged foods, nothing with yeast extract, olive oil, coconut, avocado, oily fish, nuts, seeds, fruit apart from half an apple (migraine trigger - fruit), salads (causes bleeding, raw foods), spinach, broccoli, cauliflower. 

 

Nikki

 

[DataGuy]

Thanks @Nikki74 for the detailed descriptions. So you usually have a reaction to the clonazepam dosing, but not the mirtazapine or lexapro?

 

When you say you have a slight improvement in symptoms after taking the lexapro, do you mean immediately after you swallow it? Then 20 minutes later things got worse again?

 

I am concerned the Clonazepam is not really helping you. I know we never recommend skipping doses here, but have you ever skipped a dose in the past or had a much larger reduction than usual? I am just wondering how you felt after that, if you did it.

 

Ever skipped doses of the other two meds? Interested to know what happened if you did.

 

I think we have many possible routes that might help you. One thing I have been thinking of is that generally antipsychotics have a dose dependent risk of akathisia (the more cumulative doses of of the drug, the greater the risk). Although the general theory has been that akathisia is caused by the effect on dopamine, what most antipsychotics have in common is a powerful antihistaminergic effect, which could also be a contributing factor. Mirtazapine has this powerful antihistamine effect in common with antipsychotics, which is why it is so sedating relative to other antidepressants. I am concerned that continuing to take the Mirtazapine may be worsening the akathisia in a dose dependent way. That is one possibility.

 

The second one is that you seem to clearly have a paradoxical reaction to the clonazepam, although it is not always consistent or exactly the same every time. When people take benzos for long periods, they tend to become ineffective over time and people can even develop paradoxical reactions to them. I was just reading this paper on how GABA-A receptor stimulation actually becomes stimulating rather than sedating in cases of status epilepticus (prolonged seizures). I am wondering if a similar type of mechanism is happening with your paradoxical reactions to the benzos. That is another (highly speculative) possibility. Another question: do you ever feel sedated or relaxed after taking the benzo, or do you almost always feel excessively stimulated now?

 

Obviously there is no clear cut solution to either of these problems, if they are indeed the cause of your suffering. But I think identifying the cause of the biggest problems is the first step to trying to find a solution to eliminate it. 

 

 

Edited March 18, 2021 by DataGuy

[DataGuy]

This next suggestion and paper may be a bit triggering, but I think it's important you have every option possible.

 

https://www.pnas.org/content/111/50/18031

 

"Tobacco smoking interferes with GABA_A receptor neuroadaptations during prolonged alcohol withdrawal"

 

"Alcohol dependence and tobacco smoking are highly comorbid. Although continued smoking during alcohol withdrawal may reduce relapse risk, most of the morbidity associated with alcohol dependence is due to tobacco smoking and many individuals in alcohol treatment express a desire to quit smoking. We conducted a parallel study in alcohol-dependent humans and nonhuman primates to identify the impact of tobacco smoke and nicotine on the neuroadaptations in the GABA-ergic system that occur during alcohol withdrawal. Our findings show that tobacco smoking, but not nicotine consumption, blocks the recovery of GABAA receptors during extended alcohol withdrawal and that sustained elevations in GABAA receptor levels in alcohol-dependent smokers are associated with alcohol and cigarette cravings, possibly contributing to continued smoking."

 

So it is possible that smoking is making tapering the benzo more difficult. Benzodiazepines and alcohol have a similar primary mechanism (binding to the GABA-A receptor), so it is likely this research is relevant for benzodiazepine withdrawal. The good news is that if you can manage to switch to nicotine rather than cigarettes (via a gum or patch), this might help make tapering a bit easier by removing the impediment of smoking to GABA receptor adaptation, which is the hypothesized way we adjust back to normality from withdrawal. 

 

Sorry you've had to suffer so much @Nikki74. Hope we can find a solution to get you back on the road to recovery. 

 

 

[Nikki74]

58 minutes ago, DataGuy said:

Thanks @Nikki74 for the detailed descriptions. So you usually have a reaction to the clonazepam dosing, but not the mirtazapine or lexapro?

 

Yes, I’ve always had some paradoxical reactions to the clonazepam, then with my long hold it mostly improved but not 100%, the doses never calmed. Maybe for short time if not paradoxical.

 

since January, pretty much every dose is torture. It might react v fast and literally make me feel (word I can’t say), I go into deep DR terror state, and feel near psychotic (not truly but like that) and it’s horrifying, the intrusives and worse akathisia are enough to make me want to scream it’s so bad, I fear for my life, but that’s also how the akathisia is when it’s so bad any other time too so it’s very frightening,  and that’s how it was shortly after I started clonazepam for the akathisia and why I cut the dose pretty fast 2018.

 

Or it sedates a bit for an hour maximum.

 

i dread taking it now. But my brain tells me when dose is due?! 

 

I did get bad reactions to the lexapro after a few months on the clonazepam in 2018 which is why I then turned to cutting the lexapro. 

58 minutes ago, DataGuy said:

When you say you have a slight improvement in symptoms after taking the lexapro, do you mean immediately after you swallow it? Then 20 minutes later things got worse again?

 

Yes, immediately after I drink it, then I start to go back to how I was when I woke up. 

58 minutes ago, DataGuy said:

I am concerned the Clonazepam is not really helping you. I know we never recommend skipping doses here, but have you ever skipped a dose in the past or had a much larger reduction than usual? I am just wondering how you felt after that, if you did it.

 

No never skipped a dose. 

I cut 12.5% in one cut after 5 weeks on it as it had turned on me badly. That helped. But then the more I cut, the worse the akathisia I’d been given it for, got. 

 

But I truly wish I could get off this drug @DataGuy. It is very bad.

 

what I don’t understand is sept-Dec things got a lot better akathisia wise for some of the time but the clonazepam was never that helpful or was still v v bad at times.

58 minutes ago, DataGuy said:

Ever skipped doses of the other two meds? Interested to know what happened if you did.

 

No never skipped them either. Since the cold turkeys I’ve been very careful not to. 

58 minutes ago, DataGuy said:

I think we have many possible routes that might help you. One thing I have been thinking of is that generally antipsychotics have a dose dependent risk of akathisia (the more cumulative doses of of the drug, the greater the risk). Although the general theory has been that akathisia is caused by the effect on dopamine, what most antipsychotics have in common is a powerful antihistaminergic effect, which could also be a contributing factor. Mirtazapine has this powerful antihistamine effect in common with antipsychotics, which is why it is so sedating relative to other antidepressants. I am concerned that continuing to take the Mirtazapine may be worsening the akathisia in a dose dependent way. That is one possibility.

 

Yes another possibility for sure.

58 minutes ago, DataGuy said:

The second one is that you seem to clearly have a paradoxical reaction to the clonazepam, although it is not always consistent or exactly the same every time. When people take benzos for long periods, they tend to become ineffective over time and people can even develop paradoxical reactions to them. I was just reading this paper on how GABA-A receptor stimulation actually becomes stimulating rather than sedating in cases of status epilepticus (prolonged seizures). I am wondering if a similar type of mechanism is happening with your paradoxical reactions to the benzos. That is another (highly speculative) possibility. Another question: do you ever feel sedated or relaxed after taking the benzo, or do you almost always feel excessively stimulated now?

80-90% stimulated by it now I’d say, especially since January but was the case soon after I started it (though had severe akathisia I was given it for!) and also over the years since it’s had that effect many times.

58 minutes ago, DataGuy said:

Obviously there is no clear cut solution to either of these problems, if they are indeed the cause of your suffering. But I think identifying the cause of the biggest problems is the first step to trying to find a solution to eliminate it. 

 

 

Thank you

 

I’m absolutely desperate for help! 

 

I have to dose the clonazepam now and I’ve not come down from severe akathisia yet today. Yesterday the 3pm dose was extremely severe and the 8.30 one, I had calmed a little before it but got worse after it.

 

Much gratitude @DataGuy

 

i wish I could share with you a benzo buddies thread I found of mine going back to just after I started on the clonazepam 3 years ago, I found it last night and it’s just like I am now. 

 

I desperately feel the benzo is not ok.

[Nikki74]

3pm clonazepam dose was bad for 30 minutes then brought some relief. Not much but enough to not be completely frantic.

 

Totally unpredictable. 

 

Yesterday it was brutal for 2-3 hours 

 

some days every dose does opposite to what it should.

 

Thank you for smoking article. 

 

As someone who quit alcohol 8 years ago, I think allll of this mayhem was kicked off by my taking 3 doses of Zopiclone in 2016 - which led to my gaba receptors being thrown (all in hindsight) and the start of polydrugging. 

[Nikki74]

17.30 and things deteriorating again. The akathisia level is building badly. 

 

Just wanted to give a real time update. 

[Nikki74]

On Mirtazipine 

 

A few notes on this - after my cold turkey stops and I went into crisis state (didn’t know it was wd)  I was told to double the Mirtazipine dose. I did and woke the next day with churning gut (I call it akathisia gut as it’s deeply agitated feeling that makes you feel terrorised and I have it all the time), what I thought were restless legs and the same kind of explosive start I have to this day (this was though as I’d just fallen into severe wd state too). 

 

I lasted a month on 30mg before my GP switched things round again and lowered it back to 15mg.

 

When I dose it I have the most urgent panic-hunger, so the drug does take the edge off the akathisia but I have to eat a heap of food to get it to ‘work’ to make me sleep. Always been the case since I got the akathisia. 

 

I was on Mirtazipine for 2 years prior to this time, 2009-2011 I think 30 or 40mg

 

Finally, last year I had a change of genetic. I’d had changes many times before but not noticed a difference. This time was terrible. It was like a different drug. I had adverse reaction to it and had to find a different generic  to try. 

 

It gave me terror, flashbacks and racing mind, I’d sleep annhour or 2 then wake up from vomiting in my sleep. I had frantic akathisia. 

 

I found a generic  that so far have been able to keep getting and eventually worked for sleep again. 

 

 

 

 

[DataGuy]

Hi @Nikki74,

 

Thanks for the updates. Do you remember if you also had a paradoxical reaction to diazepam? Do you remember the reason you switched from diazepam to clonazepam? I am just wondering if it is a general paradoxical reaction to benzos or if it is unique to clonazepam. (Some people just have a paradoxical reaction to benzos in general). 

 

Sorry for all the questions, I don't have time to go back and read your entire thread.

 

If your paradoxical reaction is mostly about the clonazepam, we could try crossing over back to diazepam.

 

If it is a problem with benzos in general, there are not too many options. Rapid discontinuation is one but I think that is too dangerous except as a last resort.

 

Subbing in phenobarbital has been shown to help some patients who have paradoxical reactions to benzos or propofol, but this is mostly in the emergency critical care area according to this post. Although it would be pretty unconventional to switch from a benzo to a barbituate (benzos are generally seen as safer than barbituates), I don't think you can just carry on as you have been. I have seen someone tapering from phenobarbital before, so it's not unprecedented. Do you have a doctor who would be willing to prescribe phenobarbital in place of the clonazepam?

 

Switching to phenobarbital, we are hoping that your reaction is exclusive to benzos and not GABA-ergic drugs in general. If you also have a bad reaction to pheno, then we will have to try something else (assuming you are even able to try this). 

 

Of course this may not be the problem, but at this point anyone who helps you, doctor or otherwise, will just be guessing as to what the best solution is (or what the least harmful one is). 

[Nikki74]

3 hours ago, DataGuy said:

Hi @Nikki74,

 

Thanks for the updates. Do you remember if you also had a paradoxical reaction to diazepam?

 

I didn’t to low doses initially, like 2mg here and there. 

 

I had severe reaction to Zopiclone though.

 

i tried to take 8mg Diazepam I’m one go once after the cold turkeys and it was 100% paradoxical. 

 

This may have been because I was also on Zopiclone at the time and adverse to that.

 

After holding for 4 months after the final cold turkey assaults - I was holding on 6mg Diazepam, 5mg lexapro and the 15mg  Mirtazipine - 

the akathisia very suddenly became extreme, at that point suddenly the Diazepam was then behaving paradoxically for many of the doses too, and I tried to take more but it had either paradoxical or minor effect for 20 mins then the severity of the akathisia raged again.

 

I lasted 2 weeks in this 21 hours a day pacing frantic state before ending up in A&E (ER). There I was kept on the emergency ward and prescribed 1mg Klonopin. I didn’t want to take it but I was at risk and so tried it. It immediately drugged me heavily and stopped the pacing. I was allowed to go home.

 

Even though it initially covered the akathisia (not totally), it quickly caused other sxs including depression, I would cry every time I dosed it (a brain response, like it was crying!), get very dark intrusives and then soon it started to make me hyperactive on dosing, so I had no choice but to try to reduce the dose. 

Quote

Do you remember the reason you switched from diazepam to clonazepam? I am just wondering if it is a general paradoxical reaction to benzos or if it is unique to clonazepam. (Some people just have a paradoxical reaction to benzos in general). 

 

In hindsight, gaba drugs in high amounts or even just 3.75mg Zopiclone have not been ok for me. Lyrica - pregabalin - was v bad also. 

Quote

Sorry for all the questions, I don't have time to go back and read your entire thread.

 

If your paradoxical reaction is mostly about the clonazepam, we could try crossing over back to diazepam.

 

If it is a problem with benzos in general, there are not too many options. Rapid discontinuation is one but I think that is too dangerous except as a last resort.

 

Subbing in phenobarbital has been shown to help some patients who have paradoxical reactions to benzos or propofol, but this is mostly in the emergency critical care area according to this post. Although it would be pretty unconventional to switch from a benzo to a barbituate (benzos are generally seen as safer than barbituates), I don't think you can just carry on as you have been. I have seen someone tapering from phenobarbital before, so it's not unprecedented. Do you have a doctor who would be willing to prescribe phenobarbital in place of the clonazepam?

 

Switching to phenobarbital, we are hoping that your reaction is exclusive to benzos and not GABA-ergic drugs in general. If you also have a bad reaction to pheno, then we will have to try something else (assuming you are even able to try this). 

 

Of course this may not be the problem, but at this point anyone who helps you, doctor or otherwise, will just be guessing as to what the best solution is (or what the least harmful one is). 

It’s a catch 22 I’ve been stuck in all these years because the akathisia and agitation is my biggest and chronic symptom, and gaba drugs were added so soon after the cold turkeys that started it (tho it got much worse after all the drugs were messed with in those 2-3 months following the CTs) that its possible that all along they’ve been the reason I actually still have it now. But the issue is, when I tried to taper down on the Klonopin in 2018, the akathisia got much worse. So I have awful reactions and awful wd and akathisia the whole time. 

 

I dont think a GP in England would prescribe phenobarbital. I have to keep my head down and not raise any issues just to continue to get my prescriptions as they are. 

 

On another note, I’m concerned about the amount of agitation in my gut, it’s so bad when the akathisia is this bad but I assume that’s part of the drug damage situation. It’s like a frantic insatiable hunger. And I eat as much as I can. When the clonazepam goes it, it goes wild a lot of the time too.

 

 

[Nikki74]

@DataGuy

 

Last night I took the Mirtazipine at midnight and it caused an adverse reaction about 40 mins later. 

 

Was back in full terror, si, intrusives and torturous inner akathisia. Made me then drowsy but wcerytime I closed my eyes I would go into more terror then have myclonic jerking and wake again.

 

Eventually after 2.5 hours I was knocked out but woke in severe akathisia, rage, terror, DR and been going on all day like every other day. Deep DR too. So weak I feel I’ll pass out (and I’ve dealt with weakness the whole time so I know this is bad). 

 

I cant stay still but am bedbound squirming and kicking.

 

This is not sustainable, Ive fought all these years so hard to get through existing with this torture. Saw improvement sept- January finally just enough to give me hope that healing might be happening and since end of January I’ve been in this most severe state since January 2018.

 

i feel like I’m metabolising the drugs completely differently. There is no let up. 

 

Thanks for listening. 

[Crochet]

Nikki, I'm so sorry, I'm praying for you.

[Nikki74]

Considering small Mirtazipine reduction at this stage @DataGuy 🙏😰🙏

[Nikki74]

Hello

I fear at this stage I’m just too injured. I am so incredibly sick and disabled, never get a single break from the suffering, from the agitation and flaring akathisia, from psych symptoms with it that are terrifying, from being completely bedbound apart from if I need to pace or go bathroom, for nearly 4 years I’ve been like this, unable to rest, read a book, do my art (my brain is just unable to access or be still enough to do those things), listen to music, see family or friends, it’s an empty tortured existence. Dealing with S level akathisia, intrusives, awful violent things in mind, urges and terror, feeling like I’m simply fighting the S urges or rage feelings all day everyday, or twisting and squirming endlessly, is

no life. Adrenal surges and explosive feelings round the clock. Shaking, twitching, shuddering, head bobbing.

 

I was a gentle, funny, creative person, still am inside but the drugs have done this and it’s been 44 months and I see no way out. 

 

I am severely affected by so many foods, even a small amount of perfume in something or on a carer, or chemical smell, my period is absolutely catastrophic in its effect, I have migraines, drooping eye lids, periods of nearly blacking out, whilst remaining agitated from head to toe non stop. My legs are like jelly. I can’t even watch any tv anymore which I could all of last year. 

 

I was able to wash, dress, be on the sofa with TV on at least, better with my long hold. Still v symptomatic (lower agitation, no peace in mind, migraines, histamine, some terror, unable to walk apart from round the house briefly) and non functional but I at least had something. I started to look and be more me.

 

I’ve lost all of that progress now. Since end of January. 

 

I fear this is mast cell, or some kind of inflammatory disease caused by the drugs and endless stress of akathisia.

 

If anyone has any ideas of how I can recover, if there is any hope for me at this stage I’d be very grateful. 🙏

 

 

[DataGuy]

Sorry you are feeling so terrible, @Nikki74. At the moment I don't have any other ideas. You may have to take some radical steps soon (like skipping doses of the clonazepam to see if that makes you feel better). I don't think your body wants to be sedated with drugs anymore. I will try to think of something when I get back from work, but you are going to have to decide on a course of action and take it. Do not succumb to helplessness. 

[Nikki74]

10 minutes ago, DataGuy said:

Sorry you are feeling so terrible, @Nikki74. At the moment I don't have any other ideas. You may have to take some radical steps soon (like skipping doses of the clonazepam to see if that makes you feel better). I don't think your body wants to be sedated with drugs anymore. I will try to think of something when I get back from work, but you are going to have to decide on a course of action and take it. Do not succumb to helplessness. 

Thank you @DataGuyfor being there! It means a great deal. 

 

It’s the first time in all these years I feel myself being dragged down from the fighting warrior spirit to hopelessness. Yes it’s been strong throughout this, how can it not be with akathisia this long, but I am not someone in my prior life who did not fight through challenges so this is a scary place to find myself.

 

Would a careful taper of the clonazepam not be an option?

 

yes I feel the sedating drugs are not agreeing at all.

 

Hopefully ‘speak’ later. 

[DataGuy]

@Nikki74 a careful taper is always best, but that hasn't happened thus far. I hope you can manage it. I just do not like the state you describe yourself in. 

[Nikki74]

30 minutes ago, DataGuy said:

@Nikki74 a careful taper is always best, but that hasn't happened thus far. I hope you can manage it. I just do not like the state you describe yourself in. 

Can you explain what you mean, sorry not understanding. 

 

That hasn’t happened thus far? 

You mean a careful taper?

Or tapering hadn’t worked?

 

And

 

The state I’m in? As in the drug effects and symptoms  or feeling hopeless? 

 

And you hope I can manage it? 

 

Like it’s not going to be doable? 

 

Thanks.

 

[Wania]

I wonder if some antihistamine could help? It can be calming and it also lower histamine, if its mast cell it could help some.

 

Im in severe wave 2 weeks now, reacting to foods, water, smells, and also suspect mast cell.

[Nikki74]

32 minutes ago, Wania said:

I wonder if some antihistamine could help? It can be calming and it also lower histamine, if its mast cell it could help some.

 

Im in severe wave 2 weeks now, reacting to foods, water, smells, and also suspect mast cell.

Thank you Wania and I’m sorry you’re in a wave.

 

The Mirtazipine I’m on had strong antihistamine effects so I don’t think I could add one on unfortunately but thank you.

[Wania]

Yes I was on it as well. Some people with mast cell need to be on few and different h blockers, also mast cell stabilizers. I often wonder if protracted withdrawal isnt mast cell thing. So many things that can be caused by mast cells. I developed seizures have multiple times a day and I highly supsect its mast cell related. Dont tolerste meds and supplements tho.