Nikki74: Lexapro mirtazapine diazepam akathisia

[DataGuy]

On 3/22/2021 at 7:55 AM, Nikki74 said:

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.

 

 

Yes. From looking at your history, it seems like your dosage of each drug has barely changed in 2 years. I don't know if you would consider that tapering or holding, but, reading your entries from 2 years ago, I can't tell if you are better or worse. What do you think? It is hard to remember how you felt 2 years ago, but to me it looks like you describe a similar level of suffering back then. 

 

So it seems like tapering hasn't worked, updosing hasn't worked, holding hasn't worked. I don't know if you think tapering is possible when it seems it wasn't for the last 2 years? My suggestion was that the paradoxical agitation from the benzo might be making tapering impossible, so to try and switch to phenobarbital. It is a very flawed solution, no doubt, but I'm not sure what other solution there is. I don't think there are any easy or obvious ones at this point. Maybe a neurologist or EM doctor could suggest a safer drug to substitute and taper from. 

 

The other option is to just continue to hold and hope that things improve. It sounds like you might have had some improvement doing that? I have also seen that very long holds have helped people. During that time you could try to very slowly quit smoking to help improve your health. 

 

I'm sorry you are in such a tough situation @Nikki74. Very difficult to see you suffer for so long. 

Edited March 23, 2021 by DataGuy

[DataGuy]

The other option is to skip a dose or two of the clonazepam for a little while and see if that makes you feel better. Then switching from the benzo might seem more like a viable solution. The only time we ever really recommend rapid tapering is when someone is having and adverse reaction to the drug. Don't think that is too advisable in your case since you've been on it so long, so drug switching would be the slightly less bad option. Assuming of course that the benzo is the main obstacle. 

[Nikki74]

@DataGuythanks for your kind responses. 

 

I tapered half the lexapro I’m huge cuts over 2018-April last year and got so much worse so I had to hold. Lexapro is so very potent and was my reinstatement that never helped to stem the severe wd stopping it had Lyrica put me in.

 

By September things were finally improving for the first time in 3 years. Just enough to take me out of crisis zone. And moments of real hope too. So I kept holding.

 

Then suddenly end of January things went totally through the roof and I’ve not come back from it. It’s worse than it was even tapering in some ways.

 

I don’t understand.

 

I had a video consult with a Neuro last month. He dx akathisia but had little understanding as most don’t, of the extreme horror of it. He suggested propranolol or updosing clonazepam then. taper off it. Then referred me for CBT. He also noted I have a fear of medications but didn’t explain why I’m his letter to my GP. No one wants to acknowledge harm done.

 

I could go back on the waiting list to speak to him again and ask for a drug like tegretol, or talk about phenobarbital. He said during our consult ‘no more poisons for you’. 

 

I can barely talk it’s so intensely bad.

 

in all these years I’ve not been this severe apart from just before I updosed from Diazepam to Klonopin.

 

 

 

 

[Nikki74]

Can I ask if it’s too late and too risky to reinstate some of the lexapro?

 

i feel I tapered way too low after it was a ct reinstatement and I’m just not adjusting. I could be wrong but it’s so severe.

 

i know once when I tried to reinstate a 3% cut two days after making it, the akathisia went crazy for a couple of hours and so it put me off and I stick to the cut. 

 

@dataguy or any mods? Thank you 

 

I’ve been at 2.5mg for a year 

[DataGuy]

Hi @Nikki74,

 

I don't know if updosing the lexapro will help, but if you are going to do it, I would do it very slowly, just as you would taper downwards.

 

Based on your experience and the information given in this thread, maybe you can suggest a plan or course of action for yourself. Start with whatever you feel the biggest problem is, or alternatively what a plausible route forward might be to get to your goal. I have made most of the suggestions I can think of. 

[Nikki74]

On 4/18/2021 at 9:20 AM, DataGuy said:

Hi @Nikki74,

 

I don't know if updosing the lexapro will help, but if you are going to do it, I would do it very slowly, just as you would taper downwards.

 

Based on your experience and the information given in this thread, maybe you can suggest a plan or course of action for yourself. Start with whatever you feel the biggest problem is, or alternatively what a plausible route forward might be to get to your goal. I have made most of the suggestions I can think of. 

Thanks @dataguy

I simply have exactly the same injury I got at the very start of this in 2017, my mind and body have never once had peace since the cold turkey stops. Never regained anything back. 

 

Though with long hold was getting some glimmers.

 

Then this almighty crash end of January.

 

I know you’ve made many suggestions.

 

it seems I’m just in very severe protracted withdrawal, made worse by tapering.

 

There doesn’t seem to be a path. I know what tapering did and that was make me worse. 

 

I feel Im in acute withdrawal still while the drugs vary in reactions and effectiveness to stem the intensity.

 

my goal would be to recover from chronic 4 year constant akathisia but there is no fix for that.

 

then to slowly free myself of these toxins. 

 

N

[DataGuy]

Yes, ok @Nikki74. Very possible you are still suffering from protracted withdrawal from the initial cold turkey. We have seen it before. Likely the polypharmacy and other attempts at tapering haven't helped things, if that's the case. No easy way out, but since holding did seem to have some benefit, might be ok to try that again. If that seems to be going nowhere, you can always try some of the suggestions. I know other members have felt better upon reducing smoking or switching to a patch or gum. May help with healing too.

 

Good luck and hope you start feeling better soon. I will periodically check back in. Hang tough. And please don't be afraid to ask for support if you need it. 

 

 

[DataGuy]

@Nikki74, also important to remember that healing happens in windows and waves. Why? I don't think anyone knows. But the crash in January could very easily have been a wave. Waves can last quite a long time (months) and arise for seemingly no reason. So don't get discouraged. Stick to your plan and try to be healthy, and reach out for support when you need it. Very difficult situation, but you can survive it. Hope you start feeling better soon. 

[Nikki74]

Thank you @DataGuyfor your kind responses.

 

yes the crash or wave is ongoing unfortunately, it seems to be a new baseline that’s not really shifting as I’m still stuck in my bedroom with such severe agitation, akathisia surges, mental stuff, urges (the self attack urges I get with the aka which are horrifying), despair, my gut is crazy and I now have even worse histamine issues.

 

I changed back to the Teva branded Klonopin 4 weeks ago and it seems less adverse yet still can be and really isn’t bringing the akathisia and agitation down like it was during the latter months of my long hold, before this happened.

 

I just wish I had a pathway out of akathisia and these drugs. 

 

The smoking continues to have a hold. I tried gum and it was like too big a hit of nicotine and things got worse so had to spit it out, that was a while ago before my even more sensitive histamine stuff I have now. It’s like my body ‘handles’ (use that loosely) things it knows but dare change or anything new and it’s very bad. Highlighted recently by ongoing allergic reaction to a new laundry detergent frangrance.

 

I wake in interdose I believe on both the ssri and Klonopin.

 

It feels like as the Klonopin rises in my bloodstream, the akathisia intensifies. Like up to 3-4 hours after dose it’s so confusing. It bring it down then things intensify like this, then lowers often just before the next dose is due;  or it quickly causes intensity and comes down (down as in not ok just not frantic) later before next dose.

 

I consider trying a micro taper on it everyday. But the fear is worsening and the memories of tapering making it so much worse exponentially. And the fact I ended up on it because it was extreme.

 

peri menopause is also conflicting things and I get much worse at time of period as the progesterone drops off.

 

I long to have peace and freedom from suffering and all the poisons. 

 

As i have pre existing ME (from a virus 15 years ago) this is very bad in this. I could ‘manage’ it quite well prior to polypharmacy and then the catastrophes of 2017 that landed me here. 

 

Just trying to figure out my way to freedom.

 

wish I had more in the ground support as I’m trying to support my teenage son through anxiety (keeping him well away from prescribed harm!!) while I’m in this and I fear if I taper and get worse then he’ll have no one. Family simply doesn’t want to know. 

 

 

[Nomansland]

Hello @Nikki74,

 

regarding nicotine, maybe you could try to change to a e-cigarette?

 

I changed over from cigarettes to a e-cigarette a few years ago. You can adjust the amount of nicotine quite easy,

if its too much in withdrawal. Because of withdrawal i had to adjust the nicotine from 3 mg/ml to 1 mg/ml and it was much better

regarding activation/agitation.

 

Greetings

 

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2021 IMPORTANT WITHDRAWAL SURVEY, PLEASE PARTICIPATE: https://uelpsych.eu.qualtrics.com/jfe/form/SV_0AR9IsQ61jsiXBk

 

[Nikki74]

Hello

Things remain pretty much the same.

 

Akathisia now 4 years;

Other movement/ Neuro symptoms;

Housebound - severe ME;

Multiple severe psych symptoms (incl OCD);

Now episodes of severe depression too;

MCAS and MCS very bad;

Hormonal influence on symptoms has become a major issue. I’ve had severe akathisia, terror and panic and much more at high level since my period started. Very bad depression si too.

 

My memory has deteriorated in recent months to the point I’m making mistakes I’ve never made before in this hell journey - 2 weeks ago I forgot to take my Mirtazipine one night for example. This was very bad.

 

I don’t get adverse dosing reactions to the clonazepam much currently

 

For about 10-12 days per 28 days, when hormones are more stable, my worst ‘high rev’ symptoms can reduce a lot and I’ve had moments where parts of my brain come a little alive that have been shut off for 4 years. Eg I’ll notice a flower in my garden and take a photo. This is so minor and fleeting but as an artist I’ve not been able to access that part of my brain in 4 years. 

 

Despite this, I’ve not seen any big improvements in my condition and certain things are worse - hormone impact, mcas, my sensitivity to any and all is worse. I tried to go in a car with a carer for the first time in 7 months last week and had to abandon due to panic, terror and weakness. Afterwards my muscles jerked and I shook in terror for 2 hours. 

 

Would love to know how I’m going to get out of this and if I even can. 

 

[DataGuy]

Hi @Nikki74,

 

Sorry for the long delay. Did see your post but then I got busy and forgot to answer. 

 

Is your plan to continue to hold as you have, or are you looking at trying something else? Sounds like the suffering hasn't let up much. Do you have any inkling that you are better overall, or worse? Have you been keeping a symptom journal (even just doing this the odd day when you are feeling very good or bad can be a good marker). 

 

I think if you could taper something, that would be good. Since the Lex and benzo tapers didn't work out, seems like the only candidates are cigarettes and mirtazapine. That, or if you feel the hold has been beneficial, you can continue that. It is tough to say. You know what you are experiencing best. I think my instinct would be to try and taper, but I am not the one who has to suffer the symptoms. I don't think any of those 4 drugs is good for you, but right now it is about getting in the best position to get off of them. I think memory and cognitive problems can be a long term effect of taking sedatives like clonazepam and mirtazapine....but withdrawal can cause some problems like that as well. So very hard to say. I am inclined to think one of your drugs is preventing you from tapering due to adverse effects ie mirtazapine could be causing akathisia from taking it while you also suffer from withdrawal akathisia from the other drugs. But this is just a hypothesis. It would be great if you could get rid of the mirtazapine or cigarettes and then that made the other drugs easier to taper. I think that is the hope I hold. 

[Nikki74]

16 hours ago, DataGuy said:

Hi @Nikki74,

 

Sorry for the long delay. Did see your post but then I got busy and forgot to answer. 

Hello @DataGuythanks for your response. Long reply coming up...

Quote

Is your plan to continue to hold as you have, or are you looking at trying something else? Sounds like the suffering hasn't let up much. Do you have any inkling that you are better overall, or worse? Have you been keeping a symptom journal (even just doing this the odd day when you are feeling very good or bad can be a good marker). 

I go through a couple of weeks where things are much lower, I’m not functional and gain nothing back but I’m just not as severe with the ‘high rev’ symptoms. I sleep a bit more and I smoke less because the symptoms are naturally lower. 

 

Then boom, it all goes to severe levels. Hormones can cause this sudden shift, and then it’s stuck like that (as I am

currently) for weeks on end or months. 

 

Things ‘better’:

The really extreme level stuff I’ve got from tapering is less, but that’s also not saying much as it’s still horrendous. 

 

(The extreme stuff is:

Rage feelings, frantic all day, waking with incontinence and shouting out in terror as soon as wake and run through the house, what I call mental Tourette’s where I have loud intrusive swear words, awful violent intrusives and urges (terrifying), non stop si urges, feelings of such terror I have to hide in room, feelings of being pulled out the window (it’s as though it’s actually happening though I know it’s not, I have to cling to my bed), terrible urges to hit or scratch or bite myself (I don’t but it’s very real), non stop head movement rocking side to side, shaking and jerking all day, feeling like my brain is screaming and like I’ll scream uncontrollably, pacing/ rocking/ kicking/ twisting exploding, grunting and gasping hours on end every day,and more... I was last like this from Feb-May when I was on a different Teva clonazepam, it coincided with starting Teva boxed in an Almus livery, everything was the same about the pills and were made by Teva but I reacted dramatically paradoxically to them. I eventually asked to have the Teva boxed ones and things started to be less extreme. The only thing I can think is that the ones in the Almus box are made somehow slightly differently despite Teva telling me otherwise.) 

 

i do have some times this extreme very suddenly but not ongoing at that level. However it is very bad.

 

Things Worse:

Impact of hormones 

chemical sensitivity (not roll up cigarettes weirdly, but stuff like fragranced household products, cause neurological effects, insomnia and gut issues)

Weakness 

General cns sensitivity to noise, stress, when I tried to go in a car - bad payback 

Bladder frequency 

Food sensitivities 

Hormone Migraines 

Needing to eat soon after benzo doses (stimulates hunger reaction that is quite frantic)  and Mirtazipine (Same)

OCD severe!

Mind never ever stops whirring 

 

A good day is wake less severe, be able to be on sofa and stare at tv emotionless but mind looping though less intense, move every hour or so, reduced DP/DR so feel more in myself and the world, wash and  dress at some point in the day. I mark these in my diary and the last one was 15th July, 9th July and 23rd June before that. 

 

Im currently in severe akathisia since 30th July when my menstrual cycle started.

 

I consider tapering something all the time and get knocked back when I recall how extreme it can get.

 

i used to cry with the hysterical level pretty much everyday from 2017 til some point in late 2019/early 2020 when it became less daily but still regularly. I now only cry when it’s overwhelming. Maybe once or twice a week. The crying is the result of the severity of the akathisia. So that’s better, if that’s something! 

 

Re Cigarettes. I’ve searched my soul over this over and over as I hate it but realise it is a symptom. I realise this is hard to understand most probably. When things drop down in level - the high rev stuff - I naturally smoke less. It’s not the other way around. Then like a switch it’ll get much worse and I cannot be still for more than maybe ten minutes and smoke more, it’s a symptom, it’s like being a robot. It is very frightening and despair inducing. Because I would not choose this. 

 

I have a friend who is the same with certain foods. She longs to not eat rubbish bit this frantic state comes over her and she has to eat certain foods - biscuits and crisps. Watching on in horror as she does it. It is a symptom. 

 

So i don't think i can remove it until the akathisia goes. It’s completely part of that symptom. Ugh. 

 

Weirdly I smoked less than I am now,  in 2019 even though I was tapering and much worse in some ways, I don’t know why. 

 

Quote

I think if you could taper something, that would be good. Since the Lex and benzo tapers didn't work out, seems like the only candidates are cigarettes and mirtazapine. That, or if you feel the hold has been beneficial, you can continue that. It is tough to say. You know what you are experiencing best. I think my instinct would be to try and taper, but I am not the one who has to suffer the symptoms. I don't think any of those 4 drugs is good for you, but right now it is about getting in the best position to get off of them. I think memory and cognitive problems can be a long term effect of taking sedatives like clonazepam and mirtazapine....but withdrawal can cause some problems like that as well.

 

Yes, I’ve had terrible memory problems since the start so a large part of it is wd/ injury from that. These new ‘blanks’ happen suddenly and are different and I don’t know if it’s a side effect like you say, or continued wd injury. 

 

 

Quote

 

 

So very hard to say. I am inclined to think one of your drugs is preventing you from tapering due to adverse effects ie mirtazapine could be causing akathisia from taking it while you also suffer from withdrawal akathisia from the other drugs. But this is just a hypothesis. It would be great if you could get rid of the mirtazapine or cigarettes and then that made the other drugs easier to taper. I think that is the hope I hold. 

Yes. 

My worry is the only sleep or break I ever get is from the Mirtazipine. If tapering it wouldn’t disturb that - I know no way of knowing - then I’d definitely consider tapering some of it to see if it helps! 

 

It’s the only time I stop. But it’s heavy and I wake so crazy.

 

i believe I have interdose or increasing tolerance to the benzo as I wake more often in the night. 

 

I hsve a bad mould problem in my upstairs that has to be treated, I may have to move out for 3-4 days which is an issue considering I’m too sick to leave the house but I know this issue has to be resolved and could have contributed to my decline.

 

I would like to consider a micro cut on something. 

 

 

[Nikki74]

On 8/10/2021 at 11:24 PM, DataGuy said:

Hi @Nikki74,

 

Sorry for the long delay. Did see your post but then I got busy and forgot to answer. 

Hello @DataGuythanks for your response.

Quote

Is your plan to continue to hold as you have, or are you looking at trying something else? Sounds like the suffering hasn't let up much. Do you have any inkling that you are better overall, or worse? Have you been keeping a symptom journal (even just doing this the odd day when you are feeling very good or bad can be a good marker). 

I go through a couple of weeks where things are much lower, I’m not functional and gain nothing back but I’m just not as severe with the ‘high rev’ symptoms. I sleep a bit more and I smoke less because the symptoms are naturally lower. 

 

Then boom, it all goes to severe levels. Hormones can cause this sudden shift, and then it’s stuck like that (as I am

currently) for weeks on end or months. 

 

The really extreme level stuff I’ve got from tapering is less, but that’s also not saying much as it’s still horrendous. 

 

The extreme stuff is:

Rage feelings, frantic all day, waking with incomtinence and shouting out in terror as soon as wake and run through the house, what I call mental Tourette’s where I have loud intrusive swear words, awful violent intrusives and urges (terrifying), non stop si urges, feelings of such terror I have to hide in room, feelings of being pulled out the window (it’s as though it’s actually happening though I know it’s not, I have to cling to my bed), terrible urges to hit or scratch or bite myself (I don’t but it’s very real), non stop head movement rocking side to side, shaking and jerking all day, feeling like my brain is screaming and like I’ll scream uncontrollably, pacing/ rocking/ kicking/ twisting exploding, grunting and gasping hours on end every day,and more... I was last like this from Feb-May when I was on a different Teva clonazepam, it coincided with starting Teva boxed in an Almus livery, everything was the same about the pills and were made by Teva but I reacted dramatically paradoxically to them. I eventually asked to have the Teva boxed ones and things started to be less extreme. The only thing I can think is that the ones in the Almus box are made somehow slightly differently despite Teva telling me otherwise.

 

i do have some times this extreme very suddenly but not ongoing at that level. However it is very bad.

 

A good day is wake less severe, be able to be on sofa and stare at tv emotionless but mind looping though less intense, move every hour or so, reduced DP/DR so feel more in myself and the world, wash and  dress at some point in the day. I mark these in my diary and the last one was 15th July, 9th July and 23rd June before that. 

 

Im currently in severe akathisia since 30th July when my menstrual cycle started.

 

I consider tapering something all the time and get knocked back when I recall how extreme it can get.

 

i used to cry with the hysterical level pretty much everyday from 2017 til some point in late 2019/early 2020 when it became less daily but still regularly. I now only cry when it’s overwhelming. Maybe once or twice a week. The crying is the result of the severity of the akathisia.

 

Re Cigarettes. I’ve searched my soul over this over and over as I hate it but realise it is a symptom. I realise this is hard to understand most probably. When things drop down in level - the high rev stuff - I naturally smoke less. It’s not the other way around. Then like a switch it’ll get much worse and I cannot be still for more than maybe ten minutes and smoke more, it’s a symptom, it’s like being a robot. It is very frightening and despair inducing. Because I would not choose this. 

 

I have a friend who is the same with certain foods. She longs to not eat rubbish bit this frantic state comes over her and she has to eat certain foods - biscuits and crisps. Watching on in horror as she does it. It is a symptom. 

 

So i don't think i can remove it until the akathisia goes. It’s completely part of that symptom. Ugh.

 

 

 

Quote

I think if you could taper something, that would be good. Since the Lex and benzo tapers didn't work out, seems like the only candidates are cigarettes and mirtazapine. That, or if you feel the hold has been beneficial, you can continue that. It is tough to say. You know what you are experiencing best. I think my instinct would be to try and taper, but I am not the one who has to suffer the symptoms. I don't think any of those 4 drugs is good for you, but right now it is about getting in the best position to get off of them. I think memory and cognitive problems can be a long term effect of taking sedatives like clonazepam and mirtazapine....but withdrawal can cause some problems like that as well.

 

Yes, I’ve had terrible memory problems since the start so a large part of it is wd/ injury from that. These new ‘blanks’ happen suddenly and are different and I don’t know if it’s a side effect like you say, or continued wd injury. 

 

 

Quote

 

 

So very hard to say. I am inclined to think one of your drugs is preventing you from tapering due to adverse effects ie mirtazapine could be causing akathisia from taking it while you also suffer from withdrawal akathisia from the other drugs. But this is just a hypothesis. It would be great if you could get rid of the mirtazapine or cigarettes and then that made the other drugs easier to taper. I think that is the hope I hold. 

 

[Nikki74]

Having said I’m not getting bad reactions to clonazepam, last night’s dose caused severe surge for about an hour. 

 

Today can’t tell but struggling very much with intense and bizarre psych symptoms and also been pacing but that’s been happening a couple of weeks anyway. 

 

I seem to be having olfactory hallucinations? Intense odours that cause adrenaline surges, sweating and panic. 

 

I have become exquisitely sensitive to chemical fragrance or off-gassing from new things eg fabric storage boxes for my son, the fire retardant stuff on them, or anything plastic. 

 

But intense wafts of odours from food for example is amplified and my brain seems to be interpreting them as a threat and goes into adrenal rushes. Has anybody else had this kind of experience?

 

It makes you feel like you’re just losing it completely! 

[DataGuy]

Sorry you are still struggling @Nikki74. Sounds like you had a bit of improvement, although things still seem horrific. If the hold was slightly beneficial, I think it is the best plan we have to continue it. Not a good one but seems better than the alternatives. What do you think? Hopefully more improvement on the horizon!

[Nikki74]

@Altostrata I’m posting because we had an exchange elsewhere and you said to do so.

 

My situation continues to be very bad.

 

I’m not sure where to begin.

 

Perhaps a couple of examples of 24 hour logs that show how this varies and what remains the same.

 

Midnight, 15mg Mirtazipine 

I am agitated before taking this. Once I’ve dosed I have to eat immediately. I eat crackers, chicken, apple, potato chips non stop until the sedating effect kicks in about an hour later and I fall asleep around 1/1.30am.  If I don’t eat, the drug just makes my stomach agitated and i crave food. I need to have nature sounds on to help sleep.

 

Sleep until 8am. Need bathroom, bladder and lower back agitated. Often stomach is growling and agitated too. Use a heat pad.Go back to bed as still feel drugged and doze as long as I can until the agitation gets too much and I can’t stay still.

 

My mind loops continuously as I doze, telling me dark things as I doze, that it’s over, that I’m sick beyond repair. Sometimes terrible things like how to end things. 

 

I wake around 10/10.30am, have diarrhoea, and dose 2.5mg lexapro. Sometimes it takes the edge off the symptoms I wake with, others it does nothing or seems to make my need for the benzo more urgent. 

 

.26mg Klonopin 11am (I try to take earlier but depends on when I’m concious)- about ten minutes after taking, my stomach is highly agitated. I can’t stay still. I feel compelled to go and smoke a cigarette and get myself food ASAP. Once I’ve eaten, the agitated might reduce so as I am less panicked and frantic. In which case I can lie down for a while though my mind never stops whirring 100mph. Better days I can have Tv on. Severe days I will pace relentlessly. 

 

3pm .26 Klonopin 

Severe days this dose can save my life. Or it might have little effect. Or I’m not so severe says, it will hit my stomach and cause explosive agitation which then has me eating, smoking (it’s not a choice, like with the eating with the Mirtazipine and this drug, I have to do it like some kind of robot) and things might come down a few hours later. Maybe 6pm or a bit earlier. 

 

I’m always restless and agitated though in mind and body.

 

8.30pm .26 Klonopin 

within 10 minutes my stomach is highly agitated and I have to eat intermittently for the next few hours until I go to bed. Often by 9.30pm I’m able to watch something on tv and feel the intensity of the day reduce. However on a severe day, I can be pacing at 11pm until I take the Mirtazipine at Midnight.

 

A severe night will involve me waking at 5,6,7,8,9 with terrible stomach agitation, bladder and bowel agitation and adrenaline surging up my back, panic etc. Feeling like my body is blowing apart by the akathisia and terror, it’s truly horrific. This will often mean my whole day will be severe level too.

 

I survive and that’s it.

I now have what could be described as MCAS with exquisite sensitivities to chemical fragrance even if a carer uses a hand soap from their bag, that’s fragranced, I will suffer itching, my gut will become agitated, I’ll sweat and get muscle twitches.

 

Lately I have developed a near constant twitch in my left eye.

 

Things vary a lot. But my baseline is relentless agitation and bursts of active akathisia, despair, chronic fatigue (ME), housebound, looping mind, ocd elements to varying degrees, terrible mental symptoms in the night and if severe, through the day, agoraphobia, mcas, no peace or rest. If you’ve ever heard Chris Paige describe his akathisia, that’s how mine is at severe level. 

 

The trouble is, I know how much worse it can get if I taper.  But then I only ever had cold stops then did cut and hold, not micro. 

Sorry this is long. 

[Altostrata]

@Nikki74, help me out -- please put your daily notes in this very simple format: 

 

[Nikki74]

5am wake with severe stomach, bladder & lower back agitation, go to bathroom

Doze in and out with the above +mind looping, intrusives,Depression, numerous bathroom trips for bladder, until 10.30am

10.30 agitated all over 

10.45 diarrhoea 

10.50am 2.5mg lexapro in 100ml water 

10.55 lie down less agitated 

11.15 0.26mg Klonopin 

11.20 rush of adrenaline, leap out of bed, stomach agitated,bad akathisia, need food, panic, eat fast, have cigarette, 

11.40 back to bed agitated all over, stomach agitated,eat more 

12.10pm  less agitated 

Eat eggs and potatoes 

12.40pm  adrenal surge, stomach agitated, akathisia, pace, have cig 

1.15pm less agitated, v fatigued from just this morning.

Itching in random areas over body. 

1.30 more agitated all over & stomach, can’t stay still, left eye spasm 

1.55 akathisia exolodes, pacing 

2pm cig

Continue pacing, level 8/10

2.10 too weak, sit and legs keep juggling up and down, want to rip out of skin 

2.20 itching worse, legs still moving with akathisia.

2.30 movement stops

Left eye spasm

2.55pm big surge of agitation in stomach and all over, panic, pace, cig. 

3pm .26 Klonopin

3.15 need to eat as frantic and stomach very agitated, helps a bit to bring it down 

3.50 getting a wave of increased agitation and restlessness.terror, panic, heart pounding, head bobbing, ocd compulsions 

4.15pm cig

4.30pm less agitated, able to do a couple of v small chores then too fatigued 

5pm  eye spasm 

Eat dinner 

5.30 cig

Agitation remains low, 4/10

6.20 stomach becoming more agitated and restlessness increasing 

6.35 cig

7pm really bad stomach agitation churning, chest exploding feeling, need to pace. Itching.

7.10pm cig as so agitated and pacing 7/10 level 

7.30pm pacing stops but still v agitated 

Can’t stay still, keep getting up to do things

Stomach gurgling, agitated, feel hungry, eat 

8.10pm cig

So restless, agitated 6/10 level 

8.30 .26 Klonopin 

9pm agitation increasing, especially in stomach 

10.10 still bad 

Cig

Continue to be very restless and agitated, surging and dipping

12 midnight 15mg Mirtazipine 

Need to eat continuously until the drug makes me drowsy, I roll around with restless body until I get knocked out 1/1.15am

 

Will post more days 

[Altostrata]

@Nikki74, does smoking a cigarette aggravate your upset stomach? Does it cause any other symptoms?

 

Smoking and the digestive system

 

Smoking and bladder conditions 

 

Do you get more restless after taking mirtazapine?

 

 

[Nikki74]

11 hours ago, Altostrata said:

@Nikki74, does smoking a cigarette aggravate your upset stomach?

 

Hard to tell as it’s so bad during night when I’m not smoking. 

 

I’ve found having the agitated stomach makes me feel more like smoking. I smoke and it can bring agitation down a notch. But yes it can make stomach worse, just like my drug doses do, especially the Klonopin and Mirtazipine. 

11 hours ago, Altostrata said:

 

Does it cause any other symptoms?

 

After a few I get a bit of a sore throat. If my agitation is very bad it can make it worse sometimes and make me nauseous. In which case I try my hardest to hold off as long as possible. 

11 hours ago, Altostrata said:

Smoking and the digestive system

 

Smoking and bladder conditions 

 

Thank you. I have read the articles. 

 

This has worried me a lot Altostrata. It is an ongoing challenge, smoking.

 

From the moment I developed akathisia in 2017, I went from having quit (via vaping) to the compulsive need to smoke.

 

Also dosing the Klonopin has always had that effect too.

 

I have done an experiment-

 

Not smoked for first couple of hours after waking and dosing. Things feel less intense initially. Then my memory blanks alarmingly, I go into deep DPDR, panic increases and depression, eventually I am drawn to have a cigarette which has the effect of waking my mind up a bit. But I feel a bit of rage come up.

 

But then I’m on the cigarette train again.

 

I can go into terror and I need to smoke and it brings it down.

 

I have researched the impact of smoking on drug metabolism. I know that it affects it and stopping will increase levels of the drugs in my system. This worries me.

 

I have trialled nicotine replacement and gum caused stomach problems, and was too strong (I smoke tiny hand rolled cigarettes, the total amount of tobacco is probably equal to 3-4 packet cigarettes). Lozenges i react to the fillings. Vaping I tried once and it revved me up but maybe I could try again. Though the glycerine I am sensitive to.

 

I know you have said before that this is not a quit smoking site but I’m telling you all I can to give you a picture.

11 hours ago, Altostrata said:

Do you get more restless after taking mirtazapine?

 

 

It actually stops the pacing but unless I eat within 5-10 mins of taking it, yes it makes me restless like the Klonopin can. Last night I ended up on my feet eating until the eating helped with it.

 

However even after eating, I can be sedated in my head but still restless in my body until the full effect hits after 1-1.5 hours. If I wake in the night I’m still sedated enough to doze in and out until the akathisia pushes through 10am ish and then that’s it, no rest until 1am, 15 hours later. 

 

In 4+ years I have not been able to nap or lie still apart from the time when the Mirtazipine knocks me out.

 

The frantic need to eat with or soon after doses of the drugs is a massive issue. I often feel ravenous in a highly agitated way after dosing but also between doses. 

 

I bought a blood blood sugar test kit and it’s fine.

 

I had stool tests done and nothing showed up regards my gut.

 

I had bloods done in June and Iron was a little low but nothing else. 

[Altostrata]

My guess is that smoking is causing or exacerbating many of your symptoms due to its effect on your digestive system and bladder.

 

When your gut is damaged, this can cause too-fast absorption of drugs, which is why you're getting adverse effects shortly after taking any of them. You might take each of them with food, to slow absorption a little.

 

What drug changes have you made in the last 6 months?

 

What is your current drug schedule?

 

 

[Nikki74]

1 hour ago, Altostrata said:

My guess is that smoking is causing or exacerbating many of your symptoms due to its effect on your digestive system and bladder.

 

When your gut is damaged, this can cause too-fast absorption of drugs, which is why you're getting adverse effects shortly after taking any of them. You might take each of them with food, to slow absorption a little.

 

Thanks. I understand.

I really don’t know how to quit. It’s a cycle. Damaged stomach, worse drug reactions, worse symptoms, smoke as frantic, etc. I know this is looking like I need to though. I wonder which nicotine replacements don’t also harm the stomach.

 

This issue with my stomach started again around February. 

 

Before that I had it immediately after the cold turkeys hit me in July 2017 and I’d been told to double the Mirtazipine to 30mg, I woke the next day with this extreme churning agitation in my stomach and restlessness.

 

Last June I crossed to lexapro in water. This was the first time I found I was getting adverse dosing issues to it for a long time and had to start eating a rice cake with margarine before drinking it and it helped. However, see below regarding the loss of the fat spread this year and the impact. My bladder issues started August/ September last year.

 

But in February this year, I was given an alternative brand of Klonopin. It had Teva on it but was distributed by a different company. I had instant adverse reactions to every single dose. My stomach issue got bad during the 3 months I was stuck on that brand.

 

Also late February I had to cut out a viral food item - a vegetable oil margarine product Id used for years. It had Vitamjn E in it which I was ok with. I used to eat it on rice cakes before or after  my doses and since I lost it, because there was no replacement without multiple vitamins added and other ingredients I couldn’t tolerate, my symptoms got much worse with my stomach, and dosing.

 

I share this as it and the brand change were key changes that destroyed all the little improvements I’d had from holding. 

 

Ive tried taking with sunflower oil as a fat to help slow the drug absorption down but it doesn’t help like the fat spread did.

Quote

What drug changes have you made in the last 6 months?

 

Brand change Klonopin Feb-end April, then reverted to prior brand end April - ongoing

 

I changed the way I cut my Klonopin doses in March. I used to weigh pills everyday, subtract 22% and cut my pills to weigh that. But then I changed to just using the average pill weight (.200g x 2 pills - 22%) and always cutting to weigh .312g everyday. I’m not sure though if this is causing fluctuations as the pill weights vary.

 

I moved my last dose of Klonopin gradually from 8 to 8.30pm in the spring but can’t recall when. 

 

Other than that, no changes.

Quote

What is your current drug schedule?

 

 

Midnight 15mg Mirtazipine 

10.30am 2.5 mg lexapro 

10.40am .26 Klonopin 

3pm .26 Klonopin 

8.30pm .26 Klonopin 

(Cannot take close to Mirtazipine due to paradoxical reaction of both close together) 

 

[Altostrata]

Your clonazepam dosing is still irregular. Two daily doses 12 hours apart is the ideal. You can see how lopsided your clonazepam dosing is.

 

But you may have other health issues, such as those caused by cigarettes, confounding your symptom pattern. I'm sorry, this is beyond the capacity of peer support.

[Nikki74]

53 minutes ago, Altostrata said:

Your clonazepam dosing is still irregular. Two daily doses 12 hours apart is the ideal. You can see how lopsided your clonazepam dosing is.

 

But you may have other health issues, such as those caused by cigarettes, confounding your symptom pattern. I'm sorry, this is beyond the capacity of peer support.

Oh ok.

 

What health issues aside from stomach issues?

 

So there’s nothing here for me? 

 

No hope? 

[Altostrata]

Stomach and urinary tract problems are enough to make people feel miserable. I would not assume they are due to withdrawal.

 

We've discussed your clonazepam dosing for years. With the confounding of your symptom pattern with the stomach and urinary tract problems, it's impossible to make an informed guess about what to do next.

[Nikki74]

I didn’t have any of this until the med damage. None of it. 

For 43 years I was a whole person and nothing like what I’ve become since being injured and polydrugged.

 

I am in constant mental and physical torment. 

 

Many have stomach and bladder issues from drug injury.

 

I feel very scared like I’m some exception. 

 

And that there’s no way to that healing that people talk about. 

 

I can move the clonazepam apart further. 

 

My Dr can’t find anything wrong with my bladder or stomach other than saying it could be acid reflux and rx a ppi omeprazole. 

 

I have mold in my home which is going to be treated. Perhaps this has contributed. 

 

 

[Altostrata]

Sometimes people need to be their own health advocates, @Nikki74 

 

Your symptom pattern indicates smoking cigarettes may be triggering waves of symptoms, particularly gut and urinary tract. If you are a lifelong smoker, that may be catching up with you.

 

It's possible withdrawal syndrome is causing all of this to feel even worse, but I do not think you can blame it all on withdrawal syndrome. You need to take care of yourself and not let yourself make excuses about why you shouldn't.

 

My brother was a lifelong smoker who lost a lung to cancer. He continued to smoke even after my mother, another lifelong smoker, lost her lung. He said he didn't think it would happen to him! Lung cancer eventually killed her and having a damaged remaining lung is going to shorten his life.

 

Overall, as you know, we can't reverse withdrawal syndrome. You have to take care of your general health and not get in the way of your body repairing itself, for gradual healing. Smoking may be getting in the way of your body repairing itself.

 

Are you a lifelong smoker who finally is suffering the adverse effects of smoking on your gut and bladder? Think about it. Only you can do something about this.

[Lauren90]

How are you doing?