Londoner: any help would be much appreciated

[Londoner]

Thanks Rosetta, 

What terrifies me about those posts is that they sum up everything I have done wrong, CT's FT's, young age, high dose. It just seems like such an insurmountable mountain of hell

[Londoner]

So sorry for the despair in my last post Rosetta. I had another deeply suicidal cerebral palsy meltdown between 1am - 10am today. I'll check out the thread again, hopefully with a clearer head later

[mva96]

Hey Londoner,

 

Just wanted to drop in and see how you were doing. I saw you mentioned because of your drugs history and time on drugs etc you felt like you would never heal. I've spent a lot (perhaps too much time) on here, and can safely say so many people report feeling this way. Its the withdrawal brain trying to convince us that we are unique and will never heal, especially during something as horrible as akathisia when it genuinely feels like the world ending. 

 

You will heal and get through this, as strange as it sounds, the akathisia is evidence of this. Its horrific, but its a symptom of your brain readjusting and trying to find its balance again.

 

[Rosetta]

No need to apologize.  This is very, very difficult.  You will feel despair at times, but you are going to be ok.

[Vonnegutjunky]

Hey Londoner, reading your posts about the mental akathisia. I remember being there. I can safely say, I was the worst case I had ever read. I remember putting my face in my pillow for hours to try to distract because the light and air were too much to take. The mental pain and torment was akin to watching someone torture me children in front of me. It was a horror that is indescribable, I cannot emphasize that word enough, just pure sheer indescribable torture. I couldn’t distract, I couldn’t get out of bed to use the restroom, I was shaking and felt like everything in my body was vibrating, like all of my cells were vibrating. I couldn’t think, I couldn’t function. I had issues following tv and folding laundry. I fears being around the knives in my kitchen. this is just some of it. It’s always worse then I ever could have said. 
 

But it’s been years since I’ve been like that. 
I do feel trauma from it. 
but I am better. 
 

I remember watching short videos with the volume down. I watched some guy build dollhouses. That’s all I could do. Lay on my couch or in my bed and watch silent YouTube. It was all that worked. They were short videos, and I thought watching goal oriented videos might help. 
 

Hope for the future and coping are the only thing you need to survive. Have hope, I am your hope. We heal. And cope however you can. You will make it. 

 

[DaBro]

Hey @Londoner  I read your posts and my heart goes out to you. 

 

I also had the palsy thing. I did film it and showed my GP. He was horrified and had no answers. He sent me for a brain scan which came back clear and then to a CBT group and to a neurologist who said it was the original condition returning (BS). 

 

What i can say is that it has eased off for me. The TD, Aka and Palsy are with me a few days a month and are mild. I will never forget a 2 month wave when I just wanted to be swallowed up in self misery. 

 

My tips are the same as others. I found walking in nature with a mindless podcast (Joe Rogan ones are distracting), gardening and cycling helped. Old photos remind you who you really are and will be again.  It’s hard to get the motivation to do anything but it helped me break the self absorption in my symptoms. I tracked my feelings daily and over time saw patterns and improvements. 

 

Hang in there. The palsy and aka are your brain recalibrating and healing. 

 

Give your mum a big hug. 

[Londoner]

Hi @DaBro

Thanks so much for your note and for letting me know that you also had the palsy. It's a very bizarre symptom. I'm also planning to film it simply to show my psychiatrist what happens when you fast taper someone off long term meds. I guess he also won't believe it. I can just about understand, at a stretch, them attributing the mental symptoms to a relapse because it's not so easy for them to see how severe they are but it beggars belief with things so obvious and extreme as palsy and aka. I'm so sorry you too have had to go through this hell but thrilled that you have now written your success story.

Did you have the suicidal stuff along with your aka?

Hope all is well in Cardiff. I was brought up in Wales and lived in Cardiff for a time when I was small.

[Londoner]

Hi @Vonnegutjunky, Thanks for your lovely message.

It really is torture and I've read that it has been used as such in the Russian Gulags. I can't imagine a more effective method. 

There is the added pain of knowing that my mum sees me during the waves. I'm not able to hide it. I can't imagine what it is like to watch your own child tortured. I'm crying now thinking of it. I just hope to god that it lifts somewhat soon. It seems to come on strongest during my period.

Thank you again for reminding me that people survive.

[Londoner]

Thanks so much for that timely reminder @mva96. Yes the fear of never healing seems to be somewhat universal unfortunately. For me, the hopelessness seems to be a big aspect of this month's aka. It lifts immediately after I come out of the attack but during, it is very convincing.

My Nintendo switch came today and I found it helpful this morning to distract from the tension.

How are you getting on?

[mva96]

Good to hear the switch is helping @Londoner, theres something about gaming where its like a part of our mind can leave the body. The feelings are all still there, but we can seperate from them a little, i've found if i'm just sat in silence not doing anything the akathisia rises to an extremely uncomfortable level. Having a fan on in the background seems to help for some reason.

 

Im struggling to be honest. Its tough feeling this way, i feel pretty worthless - i too am living with my parents who are fairly distant and don't understand, so i mostly just hide myself away and try to get through each day hoping it will pass.

 

I try to remind myself that the feeling of akathisia, (mainly the inner terror/horror) sort of puts this distorted lens on everything. People look scary, the world feels scary. But that it will eventually pass. I'm coming to realise i've had varying levels of it throughout my whole withdrawal process, i just didn't know what it was until fairly recently.

 

 

[DaBro]

2 hours ago, Londoner said:

Hi @DaBro

Thanks so much for your note and for letting me know that you also had the palsy. It's a very bizarre symptom. I'm also planning to film it simply to show my psychiatrist what happens when you fast taper someone off long term meds. I guess he also won't believe it. I can just about understand, at a stretch, them attributing the mental symptoms to a relapse because it's not so easy for them to see how severe they are but it beggars belief with things so obvious and extreme as palsy and aka. I'm so sorry you too have had to go through this hell but thrilled that you have now written your success story.

Did you have the suicidal stuff along with your aka?

Hope all is well in Cardiff. I was brought up in Wales and lived in Cardiff for a time when I was small.

 

Yes I did get suicidal thoughts in aka. I realised it was BS and would never do that to my family. It’s so hard but we need to observe our feelings as an external observer and not live them as a reality. 

[Camille]

My aka is way less severe than yours but I dowloaded Tiktok and it is sometimes able to distract me enough. What helps me also is thinking that the suffering is actually your brain healing. When there's movement and change, there's healing.

[Londoner]

Hey @Rosetta, sorry to pester you but I just wondered, when you were in your really bad patch did you find it hard to concentrate on anything outside of yourself? I'm finding it very difficult to focus on things e.g. TV, conversations and practically anything outside of withdrawal and the way I feel. Did you experience this and did it lift somewhat for you?

I really hope everything goes well for you with the vaccine. I can imagine it was a difficult decision to get it but I'm sure it will pay off and it will be weight off knowing you are protected from the virus.

[Rosetta]

Yes, definitely.  It’s very rare for that to happen now.  I couldn’t read a book or watch a show.  I would read the same page over and over and I would have to rewind the show so many times.  Read and watch shows anyway.  It will help your brain repair itself.
 

It drove my husband mad that I couldn’t follow a conversation.  He got tired of repeating himself.  Eventually, I gave up trying to listen to him.  I could not stay on track long enough to understand anything he tried to say.   He couldn’t help but be offended sometimes even though he knew it was my brain failing.  It’s just natural to get tired of an “air-head.”  I couldn’t sit in a restaurant; I couldn’t sit on the beach.  I could not participate in anything that did not require a lot of attention because I had akathisia, but I could not follow anything either.  
 

I know it’s hard to live that way, but you have to find a way to remind yourself that it’s temporary, and you have to just operate a reduced level of competency for a while.  Most people operate at a lower level anyway because they don’t have the natural ability to concentrate.  We can train ourselves to concentrate, but there aren’t very many people who even know that.  It will get better.

[Londoner]

Thanks so much for your reassurance Rosetta. It really means so much to me.

[Londoner]

Juts putting this here as a reminder to myself. From Rockingchaircat day 600's success story.

'Depression- will come back with a vengeance since you don’t have a pill to push it away anymore. So you must fight it. Depression is the Enemy. Depression- Lies.
It will do its utmost to deny you reality. It will tell you that it’s not worth trying. But it’s all lies. Because it IS worth it, life is worth it. It’s all worth the trouble. During the early withdrawal phase- I often thought of steering my car into a tree, but I had to fight those thoughts, what I came up with: That driving into a tree was no guarantee of the release I sought. That in fact (knowing my luck) I’d be horribly injured, out of a truck, left with a massive amount of bills to pay with no way of paying for them- and lose my house, my job, and most importantly- the medical insurance my daughter needs to survive on.  I refused to let myself end that way – that would’ve been a coward’s way out. In fact- just about anything and everything depression tells you isn’t ‘worth it’: IS.  Try to remember this: If depression tells you it ain’t worth it- then you know it is.

[Londoner]

From Matt Samet

"I actually do have the strength, because just like before, I will not give in. Just like before, I will not end my life to end my suffering, and I will not, even at my most desperate, darkest hour, craving some quick fix for the pain, give back in to the “meds” or “doctors” that have taken so much already. Even if I spend the rest of my days a shuddering wreck, they are my days to spend here on Earth. I am not going to let this thing or the heartless, broken “mental-health” system win. Not before, not now, and not ever."

[Rosetta]

You are doing well, I see.  I know you feel miserable, but you are finding what it takes to survive.  I’m really glad to see that.  Do not ever give up hope.  You won’t spend your last days like that.  You will be healed.  It is inevitable as long as you stay alive.

[Londoner]

Thanks so much Rosetta. Your encouragement means the world. I spend a lot of time reading your thread because it gives me strength. 

Another bizarre symptom I have at the moment is feeling totally separate from other people and normal worldly concerns. I can't really look on the news or social media because I feel like their lives have no relation to mine. Their concerns aren't my concerns. Like I'm totally separate. Is this a thing? I've never felt it before. It's hard to explain and I don't know if I've really captured it. It makes me feel very lonely.

[Toast]

Hi @Londoner, 

 

Just popping in to say Hi again and send some support your way. From your thread it sounds like you've had an incredibly rough time and I want you to know I am still following your thread and rooting for you and sending love <3. Please keep hanging in there, it means so much to have you here with us. With respect to what you mention about feeling very separate from other people, I have felt this also -- like, a strong disconnect from other people. My own interpretation for why this is happening is I picture that I have basically been on a low-grade form of MDMA (since SSRIs similarly block reuptake of serotonin) for most of my life, and now, coming off, I am experiencing the extreme opposite of what MDMA does for people -- people say MDMA makes you feel really connected to other people and really strong empathy -- and so now I feel disconnected and sometimes it's hard to access feelings like love and empathy. 

 

Humans are social creatures so it's devastating to feel so chemically separate from others. I try to still nurture the buried feelings of connection that I do have -- this website helps because it's full of other people who *get it* and have similar struggles. I think just keep trying to feel those feelings of connection, even if they aren't accessible, eventually they will come back. Sending love ❤️

[Rosetta]

I know.  I think that a lot of people have that feeling when in withdrawal.  I did.  Please try not to worry about it too much.  That will stop happening eventually.  Your brain will return to normal.

[Londoner]

@Altostrata

I wondered if you could advise me on whether lamictal is an option for me. I am 9 months of fast taper 200mg Sertraline after 10 years use. My symptoms are very severe. Predominant are akathisia, very suicidal, TD, dystonia,  waking through the night but can get to sleep, rumination, despair and many others.

 

Are these types of symptoms something lamictal could potentially help with? I see from the lamictal thread that the drug is most helpful in suppressing alerting symptoms. Although I do have these, I also have a lot of depression.

My current state is very wretched and desperate... this would be a last throw of the dice.

[Londoner]

I don't know what to do at this point. Is there anything that can save my life? I'm having windows but the waves are just so intense, the suicidal thoughts and akathisia so overwhelming.... I just can't see how I'll survive without some intervention.

@Rosetta posts are giving me hope that perhaps the 9 month point will be the worst of it but I don't know if I can survive this month and more so, perhaps her akathisia wasn't as bad as mine and thus I won't survive. I also have weird involuntary muscle movements and pacing

[Londoner]

@Vonnegutjunky was there anything you did that made the akathisia go away? Mine is tardive in that I'm not on any medication and haven't been for months. I'm thinking your case may be different

[mva96]

@LondonerHang in there. Its horrific but it will pass. Its passed before and it will pass again. I promise you you can do this. Just hold on ❤️

[Londoner]

My SI is so deep and I have been planning. Serious planning. Is that the point where you try just about anything? ECT or something else?

[mva96]

@LondonerPlease call a hotline if you are feeling seriously suicidal. This isn't permanent and you will make it through but you just have to hang on in there.

 

CALM Helpline

0800 58 58 58

[mva96]

This woman survived severe akathisia, you can too.

 

https://akathisiainfo.wordpress.com/2013/08/13/my-akathisia-experience/comment-page-2/

[Londoner]

I've had poor results calling hotlines. They just seem to make me more upset. They never have a clue what aka etc is. I have posts all over my room saying to call 999 if suicidal which I have done but I feel very much like I've given it a go but I'm a lost cause

It's totally drug induced. Was just a normal, albeit anxious teen when I first took these drugs. It ruined my life for 10 years and now that mistake has killed me

[Londoner]

Thanks MVA

[Rosetta]

Londoner, My aka was so bad that I think it was almost the worst possible, but it wasn’t like that all the time, and it wasn’t like that for a long time.  We are talking maybe 15 days, maybe a few more of it being the worst of all.  I realize that when it’s going on, it feels like the worst, but once it’s gone for a few hours, you can judge the severity much better.  You will find that the number of days that you are really on the edge is so few.  In each day, it’s only a few hours.  Looking back, I would not have given up if I could have known exactly how few hours I actually would feel suicidal.  Plus, the SI is not only from the aka.  It seems as if it is, but it’s not.  There is a mental issue, too, that does not always coincide with the worst aka.  When they coincide it’s really awful, but they don’t coincide often enough — looking back I see this — for there to be such despair overall.  Again, hard to see in the moment, but you will have to trust me.  You will be grateful that you held on.

 

As for the hotline. No, they won’t understand, but they are there to talk to you, distract you, really, for a while until the feeling passes.  It ALWAYS passes.   Think of your mom or dad and wait.

[Rhiannon]

Londoner, I know this is SO SO hard. It's impossible to even put into words. Please believe those of us who have been through it though--you can get through it, you can survive, and you will be so glad you did, one day.  Just take it one minute, one hour, one day at a time.  You are stronger than you know and you can get through this.

[Londoner]

Thank you so much for your support @Rosetta, @Rhiannon @mva96

My wave length seems to have changed for the 9th month. For the past 3 months I was having rapid cycling through the day. The akathisia would build over a period of 3-8 hours, peak and then dissipate into a window or more bearable symptoms. But for the past 4 days, I seem to be getting full days of a wave followed by a full day of a bearable symptoms. I'm really struggling with the endless hours of pain. Knowing I will get relief and just have to hold on for a matter of hours was helping me get through. Counting down minutes in agony is so awful. @Rosetta, sorry to keep asking you questions especially when I know my journey will not be the same as yours, but you mentioned that the 9th month was one of your worst. Was that because the intensity of your symptoms increased or because you had to suffer the attacks for longer? Do you remember what it was about that month that made it worse than the preceding few?

 

My period will start soon and I am terrified of what that entails.

[Londoner]

Additionally, a huge amount of my rumination and neuro emotion is centred on my med history and all the mistakes I have made in the last 10 years re. meds. Just going over it and over it and all the reasons why I'm not going to heal and that everything that makes life worth living will never ever be possible for me again. Looking over other people's symptoms and convincing myself that I am worse. That even if I can recover in many years' time, that I simply cannot endure the symptoms that long.

I am getting a lot of SI independently from the the aka as well.

[Londoner]

What's so bizarre is that today, particularly this afternoon, I've felt fine. Not normal, very fatigued but fine. Reading Matt Samet's book on his Benzo withdrawal. I had a good day the day before yesterday as well. The day before that, like yesterday, I was totally convinced I needed to die after a day of aka hell and had written notes in my diary for my mum to see once I was gone. That morning I had also called the ambulance because I was worried I'd had a stroke. 2 days before I asked my mum to hide some kitchen knives.

This is what's so scary about this syndrome. When I'm in the depths of it, I simply can't see out. I don't know if others have an easier time of 'seeing out' of the fog but for me, in the last 3 months, I have proved time and time again that I am incapable of reasoning with my withdrawal brain. My only option seems to be to cling on and try to prevent suicide. I will need it for tomorrow.

 

Does it get easier to 'see out' of a wave as time goes on? Is it normal to be incapable of it to this extent?

[Altostrata]

You must stop blaming yourself, there's no point to it and it makes you more miserable. See Shame, guilt, regret, and self-criticism

 

On 6/16/2021 at 7:23 AM, Londoner said:

@Altostrata

I wondered if you could advise me on whether lamictal is an option for me. I am 9 months of fast taper 200mg Sertraline after 10 years use. My symptoms are very severe. Predominant are akathisia, very suicidal, TD, dystonia,  waking through the night but can get to sleep, rumination, despair and many others.

 

Are these types of symptoms something lamictal could potentially help with? I see from the lamictal thread that the drug is most helpful in suppressing alerting symptoms. Although I do have these, I also have a lot of depression.

My current state is very wretched and desperate... this would be a last throw of the dice.

 

You would have to work with someone who is willing to prescribe only a very low dose of lamotrigine to see how you do with it. The usual starting dose of 25mg is far too high. See 

 

One theory of antidepressant withdrawal syndrome

 

Lamictal to calm post-discontinuation withdrawal symptoms