India: withdrawal (dissociation) after 9 years on citalopram

[Zans]

17 hours ago, India said:

I think I have damage in the  frontal lobe of the brain,.

I have all these symptoms. 
I can't remember anything or keep things in my working memory. I can't carry out so many easy tasks.

 

I can walk, I am grateful for that. I can swim. I can see. i am grateful, but I don't want to feel constantly concussed as I have for 17 months now.

I want to be able to write back to everyone here. 

I want to be able to write letters again and read books.

I'd better stop myself going down this path. I have to try tp focus on my benefit application which is so hard , somethign so easy now so hard. The rage is strong.

 

https://www.headway.org.uk/about-brain-injury/individuals/effects-of-brain-injury/executive-dysfunction/

Executive dysfunction after brain injury

Executive dysfunction is a term for the range of cognitive, emotional and behavioural difficulties which often occur after injury to the frontal lobes of the brain. Impairment of executive functions is common after acquired brain injury and has a profound effect on many aspects of everyday life.

This page explains what executive functions are, why they are so important and which part of the brain is responsible for controlling them. It then provides an overview of the causes, effects, assessment and rehabilitation of executive dysfunction. Some general coping strategies are also suggested to help brain injury survivors to compensate for impairments.

What are executive functions?

Executive functioning is an umbrella term for many abilities including:

• Planning and organisation
• Flexible thinking
• Monitoring performance
• Multi-tasking
• Solving unusual problems
• Self-awareness
• Learning rules
• Social behaviour
• Making decisions
• Motivation
• Initiating appropriate behaviour
• Inhibiting inappropriate behaviour
• Controlling emotions
• Concentrating and taking in information

Hey,

 

just dropping by to wish you strength.

 

At one point I was convinced my frontal lobe was done as well. Accidentally I stumbled on this brazilian construction worker who got metal pole drilled through his head, recovered and lived to tell the story. His case became classical textbook for personality changes in damaged frontal lobe but most traits that been put on him were mere fabrications.

 

https://uncommondescent.com/intelligent-design/phineas-gage-evolution-of-a-lecture-room-psychopath/

 

I mean if he could recover and live relatively good life (he later on worked with horses and such job isn't for "short tempered, adrifted psyhopath" as he been described by back then specialists) then we have as good and likely even better chances (if we have really damaged it in the first place).

 

By the way most functions you describe operates mostly in relaxed state. I found WD switches us to amygdala, part of the brain that is concerned only with survival. Definitely no flexible thinking or creative problem solving ☺ Longer we're in symphathetic mode, more we're flooded with adrenaline, cortisol, anxiety which can make minor sound to be perceived as granade explosion, let alone our current state drawned in fear as some sort of permanent brain damage. 

Also as you probably know depression is energy preserving mode so again no time for higher brain functioning.

 

Keep going, as you say yourself "we'll make it"!

 

 

[hayduke]

Hey India, no worries at all...take your time 🙂

I think Zans there makes a really good point about being in 'fight or flight' mode putting executive and other frontal lobe functions on hold.

I'm reading this at the moment and it goes right into all that stuff.    Anything you can do to relax and feel comfortable at the moment will help.

 

Hang in there!

[Carmie]

Hi India, 

 

I know you’re struggling to read at the moment but I just wanted to let you know I’m thinking of you.🧡

[India]

@hayduke @Carmie @Zans

thank you for all your thoughts . Last few days I’ve been panicking again about the possibility of permenant damage. The cognitive problems have been going on for 18 months now. I know some things have improved but still much impaired. 

I can get out in nature now and do a few things and i’m Grateful I can still little bits of joy but I still feel very weak a lot of the time.. and have to lie on the sofa . 

I want my ‘mind’ back , to write with ease..brain hurting just from writing this 

 

 

[India]

Thrown back into symptoms today, fatigue, weakness, hyperacusis , irascible, palpitations. Had strange numbness in my legs and arms. Brain fog. I’ve made a 2% reduction over last 4 weeks. In bed now. 

May have taken wrong bottle of meds ( liquid mix beyond 4 week open expiry date). Or reductions or WD? Worries about MRI playing on mind. Always feel upset that I still struggle cognitively. Try to focus away. 

New symptom over last 8 weeks:

sleep amnesia..

waking up not knowing who or what or where I am. Not knowing where I am in space and time.

Anyone else have this?

[Kernol]

Hi @India I just wanted to say I have that exact symptom sometimes of waking up and not knowing who I am or where I am. It does pass fairly quickly but it is distressing when it happens. I have almost got used to it now when it does happen as I know it will pass. At first I was very scared.  I hope yours passes quickly. 

[India]

Today I feel like giving up.

The unbearable weight of all this, and of my life, the symptoms, the pain. My previous traumas. 

Everyday I fight for some sort of sunrise that may never come.

i can’t get freedom and I can’t get peace. 

Is this it? For years I fought 

My body is falling apart.

I felt all my mental strength collapse tonight. 

I know that it is no one else’s responsibility to fix it. 

Somehow I will have to find a way to fight another day. 

I feel like I am fighting an impossible battle with my body. 

How much can one human take?

is this depression, or the grief of my whole life, always fighting but always sinking.

what do you do when you have lost everything?

[intothewoods]

3 hours ago, India said:

what do you do when you have lost everything

 

You've not lost anything important, in fact you're stronger than ever these past few months. I am AMAZED at your progress in great leaps. Your posts to others (yes, we ❤️ you @Gemma92) are powerful and prolific. You see so much more, your awareness and research has taken off. I learn from you nearly every day. What a gift! (plus you could be Talitha's twin, which, how cool is that? 😎). 

 

This night of horror will pass. It's not you, it's the meds. I feel so not human the past two weeks and ask many of the same questions you did above, yet my brain comes back around to the healing light. Perhaps we heal more when we hurt more. It seems that way. 

 

Keep warrioring..... 

 

 

Edited December 31, 2019 by intothewoods
had the wrong Gemma

[Tom37]

You haven’t lost everything as this is only temporary. I know how it feels to have those feelings and sometimes there is nothing you can do other than to accept this is how you feel for now and just keep breathing until you start to feel a bit better. Just try to remember that it’s not always going to be like this and it does get better which I know is easier said than done as we live in our current reality but it will change. Change is one thing that wd guarantees.

 

Hopefully you feel better soon.

[rola]

8 hours ago, India said:

Today I feel like giving up.

The unbearable weight of all this, and of my life, the symptoms, the pain. My previous traumas. 

Everyday I fight for some sort of sunrise that may never come.

i can’t get freedom and I can’t get peace. 

Is this it? For years I fought 

My body is falling apart.

I felt all my mental strength collapse tonight. 

I know that it is no one else’s responsibility to fix it. 

Somehow I will have to find a way to fight another day. 

I feel like I am fighting an impossible battle with my body. 

How much can one human take?

is this depression, or the grief of my whole life, always fighting but always sinking.

what do you do when you have lost everything?

hi 
I'm feeling the same way right now, but we have to keep fighting.
We've come a long way. And don't look back.
I'm offering you my hand. 
I hope a window will come soon. 

[India]

I’ve got akathisia. I felt like I was loosing my mind. Terrified. I walked round and round. I held onto a towel bar. I couldn’t breathe. I couldn’t find safety in my mind. I can’t stand noise. I feel like everything is a threat. I feel frozen but then I can’t be still. Sorry. I know I have received replies. I am terrified. 

Can liquid medication over 4 weeks open cause this? @jozeff

[Erell]

I know how terrifying these feelings are, and ow exhausting they can be.

Please hang on dear India, it will pass ❤️

[Kernol]

17 hours ago, India said:

Today I feel like giving up.

The unbearable weight of all this, and of my life, the symptoms, the pain. My previous traumas. 

Everyday I fight for some sort of sunrise that may never come.

i can’t get freedom and I can’t get peace. 

Is this it? For years I fought 

My body is falling apart.

I felt all my mental strength collapse tonight. 

I know that it is no one else’s responsibility to fix it. 

Somehow I will have to find a way to fight another day. 

I feel like I am fighting an impossible battle with my body. 

How much can one human take?

is this depression, or the grief of my whole life, always fighting but always sinking.

what do you do when you have lost everything?

hi @India I feel exactly the same as you. I ask myself how much more can I endure of this endless emotional pain but then I see stories of encouragement on your thread and others and we have to cling on and fight through another day as it could be the day that things change ever so slightly for the better. I tell myself that and I hope that we both and everyone else severely suffering feels the peace that we desperately long for soon. ❤️

[jozeff]

Ho India,

 

Sorry to hear you are having such a hard time. I really wish there was something we could do to end this suffering immediately. In these days of despair we don't see a lot of improvement.

 

I feel exactly the same as you do sometimes. I hardly remember the days I just lived my life and didn't feel so hopeless and helpless.

 

What do you mean by liquid medication being 4 weeks open? Open bottle you mean?

 

Keep the faith India! You have been a great community member for so long.  Don't loose hope now. We're all in the same boat. All suffering immensely and we all want this to end..

 

You can do it!!!

 

 

Cheers

Jozeff

 

[hayduke]

Hey India.

 

Sorry to hear you're having such a rough time of it.

 

It will pass.

 

Are you able to make it to a yoga class?  I find restorative yoga in particular is really good at getting out of limbic system overdrive.

Otherwise do you think a small updose, maybe to before the latest cut or two, might help?

 

Cheers

[sunnysideup69]

Hey London neighbour, want to send you good wishes for a happy and healthy new year. Your update caught my eye... 

15 hours ago, India said:

I’ve got akathisia. I felt like I was loosing my mind. Terrified. I walked round and round. I held onto a towel bar. I couldn’t breathe. I couldn’t find safety in my mind. I can’t stand noise. I feel like everything is a threat. I feel frozen but then I can’t be still. Sorry. I know I have received replies. I am terrified. 

Can liquid medication over 4 weeks open cause this? @jozeff

 

My answer to that question is, anything is possible. If you are sensitive generally to reductions, then maybe you are sensitive to meds which have been open a while.... Guess it depends on how much over 4 weeks old the bottle is. It's still within its best before date too? Or maybe it's just your last reduction catching up? Is there any way you might have accidentally updosed? 

I'm so sorry you're experiencing this and just know it will end again. Sending good wishes your way for peace and calm. 

SSU

[Kernol]

Hi @India I hope you are feeling a little better. Wishing us all strength and much healing in 2020

[India]

15 hours ago, sunnysideup69 said:

Hey London neighbour, want to send you good wishes for a happy and healthy new year. Your update caught my eye... 

 

My answer to that question is, anything is possible. If you are sensitive generally to reductions, then maybe you are sensitive to meds which have been open a while.... Guess it depends on how much over 4 weeks old the bottle is. It's still within its best before date too? Or maybe it's just your last reduction catching up? Is there any way you might have accidentally updosed? 

I'm so sorry you're experiencing this and just know it will end again. Sending good wishes your way for peace and calm. 

SSU

@jozeff maybe 2 months. Sell by date is 3/21

i realised with my brothers brief calculations that I added 1ml less of water to my dilutions for over a month. Or maybe more months. Throwing my tapering calendar out.  A disaster.

 

thank you to everyone who has written. I don’t know how I am still here this morning  after a night of dark abyss. To receive support has kept me going . I have read and reread today.

 

I had intense suicidal impulses and rage out of proportion and a sense that my whole identity was collapsing in on itself.

[hayduke]

Hey India, well done on finding the dosage problem.  Hopefully correcting this sees you feeling a lot better before long.

 

Cheers

Hayduke

[jozeff]

Ok India,

 

What are you taking now? I mean how much of your med and how do you prepare it?

 

You added too little water you say. To what volume and for how long? At least a month you say...

What is you total volume.

 

You have been taking too much medication according to your miscalculation. This has to be undone slowly so you can taper correctly again.

 

I would love to think a bit about your dose so let me know what you did!

 

Don't try to panick too much. This is a temporary setback!

 

Cheers

 

Jozeff

[India]

On 1/3/2020 at 12:06 PM, jozeff said:

Ok India,

 

What are you taking now? I mean how much of your med and how do you prepare it?

 

You added too little water you say. To what volume and for how long? At least a month you say...

What is you total volume.

 

You have been taking too much medication according to your miscalculation. This has to be undone slowly so you can taper correctly again.

 

I would love to think a bit about your dose so let me know what you did!

 

Don't try to panick too much. This is a temporary setback!

 

Cheers

 

Jozeff

@jozeff thank you so much for taking the time to respond . I know your energy is valuable.

It's a bit of a mess. Very blurry vision at the moment

To answer:

For 2-3 months now I had been doing some bottles at 1ml of medication which is 40mg AI in 7 mls of water

but mostly I was diluting 1ml of Citalopram 40mg/ml in 14 ml of water NOT 15ml as I was supposed to.

 

On my tapering chart I had worked out these ml values to take in my syringe based on what my brother was saying should have been 1ml of liquid 40mg/ml to 15ml of water and was using a taper off chart  of roughly 4% drop with one month holds. Really I was sort of using the sliding method. 

Here were my amounts 

22/10/19 started tapering

2.5ml

and ended up last 1 week on 

1.93ml

 

This last week I was taking 1.93mg from 15ml (with AI of citalopram 40mg) 

Last two days I went back to taking 1.93mg from 16ml (with AI citalopram 40mg)

 

I think when I was measuring out 1ml of the liquid and adding 7 ml I was taking lower amount but many times taking the 15ml mixture ( def last month).

 

 

[jozeff]

To be honest it is not completely clear how many mgs you are taking right now.

 

You dissolved 1 ml 40 mg/ml citalopram solution to 14 ml instead of 15 ml..... How much of that total solution do you take?

 

You say you took 1.93 mg but I think you mean 1.93 ml

 

If you dissolve 1 ml of 40mg/ml solution and add that to 15 ml you get a 2.5 mg/ml solution.

Taking 1.93 ml of that equals 4.83 mg citalopram

 

If you dissolve 1 ml of 40mg/ml solution and add that to 14 ml you get a 2.67 mg/ml solution.

Taking 1.93 ml of that equals 5.15 mg citalopram

 

If you have been taking 5.15 mg accidentally  I would continue to take that and work your way down.

 

It is important for you to take the same amount of meds now for a couple of weeks to settle down a bit. I would do that first and then continue tapering.

 

Mistakes are evil but there is nothing you can do about it. These things happen and we learn from it.

 

Good luck and hopefully you recover soon.

 

cheers

Jozeff

 

 

[India]

On 1/4/2020 at 1:14 PM, India said:

@jozeff thank you so much for taking the time to respond . I know your energy is valuable.

It's a bit of a mess. Very blurry vision at the moment

To answer:

For 2-3 months now I had been doing some bottles at 1ml of medication which is 40mg AI in 7 mls of water

but mostly I was diluting 1ml of Citalopram 40mg/ml in 14 ml of water NOT 15ml as I was supposed to.

 

On my tapering chart I had worked out these ml values to take in my syringe based on what my brother was saying should have been 1ml of liquid 40mg/ml to 15ml of water and was using a taper off chart  of roughly 4% drop with one month holds. Really I was sort of using the sliding method. 

Here were my amounts 

22/10/19 started tapering

2.5ml

and ended up last 1 week on 

1.93ml

 

This last week I was taking 1.93mg from 15ml (with AI of citalopram 40mg) 

Last two days I went bacto taking 1.93mg from 16ml (with AI citalopram 40mg)

 

I think when I was measuring out 1ml of the liquid and adding 7 ml I was taking lower amount but many times taking the 15ml mixture ( def last month).

 

 

 

On 1/5/2020 at 3:39 PM, jozeff said:

To be honest it is not completely clear how many mgs you are taking right now.

 

You dissolved 1 ml 40 mg/ml citalopram solution to 14 ml instead of 15 ml..... How much of that total solution do you take?

 

You say you took 1.93 mg but I think you mean 1.93 ml

 

If you dissolve 1 ml of 40mg/ml solution and add that to 15 ml you get a 2.5 mg/ml solution.

Taking 1.93 ml of that equals 4.83 mg citalopram

 

If you dissolve 1 ml of 40mg/ml solution and add that to 14 ml you get a 2.67 mg/ml solution.

Taking 1.93 ml of that equals 5.15 mg citalopram

 

If you have been taking 5.15 mg accidentally  I would continue to take that and work your way down.

 

It is important for you to take the same amount of meds now for a couple of weeks to settle down a bit. I would do that first and then continue tapering.

 

Mistakes are evil but there is nothing you can do about it. These things happen and we learn from it.

 

Good luck and hopefully you recover soon.

 

cheers

Jozeff

 

 

@jozeff thank you 

ive been too ill to reply. Lying down all the time with extreme fatigue and so on.

Thank you for this calculation. My mixture is 16ml in total containing 1ml of citalopram (40mg)

I was previously taking ,as you worked out correctly,  5.15mg (total mixture= 15ml containing 40mg Citalopram)

Since then I made up the 16 ml mixture and worked my way down from equivalent of 5.15mg to where I am now. For 4 days I’ve been taking 1.94ml of the 16 ml mixture ( containing 40mg of citalopram).

i plan to hold here.

i think I have probably gone too quickly maybe? 

But ill is ill. I am so ill.

and I am exhausted from explaining over and over to everyone on the outside why I am so ill.  Even with my compassionate therapist .. I’ve been lying in bed having Skype therapy ..

my hyperacusis is back and I feel like a raw nerve ending! I am a recluse!! Even the shower hurts my skin. Clearly all my conditions are intersecting.  One minute it feels like fibromyalgia then chronic pain and fatigue then it feels like a brain injury , floating in all this is my psychological state and trauma...

i think I will stay on 1.94ml for a least 6 weeks.

i see now it’s going to take me years and years to get off this horrid drug. 

 

How are you?

i can’t see screens very well or retain what’s been said if it’s not on screen.

Thank you for replying

and everyone else too. I grateful appreciate it even if I can’t type and express this . Once again brain has reached limit.  Can’t write more. So frustrating and sad.

[India]

On 1/1/2020 at 2:18 AM, hayduke said:

Hey India.

 

Sorry to hear you're having such a rough time of it.

 

It will pass.

 

Are you able to make it to a yoga class?  I find restorative yoga in particular is really good at getting out of limbic system overdrive.

Otherwise do you think a small updose, maybe to before the latest cut or two, might help?

 

Cheers

I think I should stay here for now??? 

1.94ml 

thank you.

my mum just sent me a Pilates ball. When I have strength I will use it just for breathing to start..

been sofa bound for days ...

and struggling for breath

fatigued and heavy head 

so angry , then sad , the circle ..

i keep surviving though 

how are you?

[hayduke]

Yep since your dose got out of whack definitely best to sit tight for a bit.

 

I'm doing ok thanks.  Had a pretty foul sort of week but it came good at the end.

 

Still lots of fatigue, can relate.  Hate knowing I want the house cleaner but not having the energy to get up and do it.  I just do bits and pieces whenever I have the energy.  Much of the time I'm too knackered to even play video games (I have to laugh at that).

 

Restarting my taper again after a bit of a hold.

 

Hope you're feeling better soon India.

 

Cheers

[India]

I find the SA format hard to use.

update :

bad experience with neurologist in that he has questioned the credibility of my symptoms ..

[India]

@Sunnysideup

Thank you for your best wishes and response. Cognivity I one of my struggles. It’s hard to write consistently.

london neighbour yes. This bitter sweet city. I’m mostly a recluse because of WD but I get out to the local green spots near my flat on better days!!

How are things currently?

 

@hayduke thank you also. How are you.

 

currently I’m on 4.9mg or something ( it’s on my tapering chart) . I’m reducing by 1% a week with s planned break . Recovered from the breaking point but struggling with hyperacusis again. 

I feel like my brain is fried , concussion. Can’t write more

[India]

Update.

Very ill today, nausea , in a big wave. 

I feel frustrated I cannot engage more here and by email to members of the site. I compare myself to the fluidity and clarity of their writing.

 

I feel like there is a heavy weight in my brain . The world does not feel real. I feel like a vegetable.

i went into deep fear over permenant brain damage today. 

I have made roughly an 8% drop since November . I am going to have to hold here for now. In July , it will two years since this nightmare started. I imagined myself back to my vibrant self, reading, writing , painting. Still bruised and traumatised but at least 70% back to where I was. I’d say I’m 10% of who I was , that’s better than the 0% I started out with but not acceptable in the realm of living. 

Will I ever not feel this vegetable brain? This concussion.

 

These terrible drugs, to me those that have rigged these pharma trials are absolutely culpable!

 

Am I healing at all? Or will I not heal until I reach 0?

in spite of all the theories, I fear what might have happened to my brain.. I feel the damage, or at least, the lack of ability of my brain to compensate.

 

what does it mean that I am where I am 18 months later? Will I only begin to heal at 0 and will it be years. Or am I one of those that never heals?

 

so many dire questions ... from my bed/sofa. 

 

If its ok I was hoping to tag ppl who I knew here to ask their views.  

 

[Armorall]

Hey India if you read Judith's success story, her healing didn't start until her 4th year. I know, it's a long time, but it is there. Hang in there, peace and love to you. 

 

[Superwoman]

India, hang in there.  The brain has tremendous ability to heal.  Even when people have stokes and one part of the brain dies, other areas of the brain take over.  Healing is a frustrating slow process.  Just one step at a time and one day at a time. 

[India]

Current symptoms :

extreme fatigue- run over by bus and heavy weights

hyperacusis again

body pain

concussion feeling

cognitive problems 

coordination impaired 

new symptom: nausea

 

 

yesterday :

terrible grief, sadness 

 

today very bad depression 

 

thank you to those that have replied unfortunately very limited brain power at moment. Even this was hard to write. Comments mean a lot .

 

[hayduke]

Hope you're gradually feeling better India.  Holding should tend to even things out.  Sometimes when things have got to a certain point or had a bit of an upset you have to hold for longer to start feeling ok again.

 

Cheers

[India]

I’m in hell again

[Carmie]

Hi India,

 

I’m so sorry you’re struggling so much, sending big hugs your way🤗

[Erell]

Sending big hugs and my love dear India ❤💪

[India]

@Erell @Carmie @hayduke @Superwoman

And anyone I’ve missed: 

 

thank you for the support. It means even more 20 months down the line.

I am sure I have frontal lobe damage and I cry a lot about it. I struggle to write , leaving me feeling caged in a prison.

 

Ive spent most (80%)  of the last 3 months in my flat... with walks out only locally.

 

Wednesday I have my MRI. I am scared. I also now have anger and aversion triggered by hospitals and medics .. a kind of trauma.. Because my harm has not been recognised.

 

Thats my update.

 

i realise now I am in for the long haul. 

Its 2 years in July. Not even off the drug!!!

 

 

simply unable to write much due to concussed feeling in my brain.