[ depersonalization & derealization support group ]

DP/DR SUPPORT GROUP

hello everyone!! i'm seafoam. ↓

during my taper off klonopin i have been dealing with a lot of symptoms, but my primary and more severe/constant symptoms are depersonalization and derealization often shorted to DPDR. i tapered from april 2019 to october 2019, and am currently 5 months off. my DPDR has actually gotten worse since i finally jumped- my depersonalization itself didn't really come into full swing until two weeks after i jumped, i had been dealing with mostly derealization prior to the jump. i woke up one day and felt trapped inside a body that wasn't mine. the feeling has progressively gotten worse until now and it's insanely hard to deal with. i want to make a support group for people like me, so we can benefit from knowing we're each not alone.

sometimes you can feel like you're going absolutely insane with these symptoms- you question if you were ever real in the first place. i look at old photos of myself and swear i never did those things. sometimes i wonder if i'm actually the only one with DPDR this bad. these symptoms can absolutely destroy logical thought when they're at their worst. that's why we need to stick together when we experience these feelings.

anyone on the forum is welcome in the support group, i would like to remind everyone to follow the forums rules as well as some reminders from myself;

• please keep the topic to mainly DP/DR- it's okay to talk about some other things but i want to keep the posts inside this group mostly consistent.
  
• please remain courteous and understanding with those who have seemingly 'less severe' DPDR than you. i understand this feeling, but if you are on this forum and truly in benzo withdrawal, i think we can all agree that's enough to warrant respecting the difficulty of each other's DPDR experiences.
  
• try to remain uplifting and not focus just on yourself. the point of a support group is to share our troubles and listen to others hardships equally. give and receive! i really would rather not this become a dumping ground for people to rant and leave. try to uplift one other person for each time you share your own struggles. let's build a strong bond with each other!
  
• no racism, sexism, homophobia, xenophobia, etc. of any kind allowed here. we are ALL suffering. there is no need for more pain.
  
• when discussing DPDR symptoms, keep in mind we are all anxious and easily upset. keep in mind the wellbeing of others here when you post- just be kind and considerate!
  

simply reply to join this group.

Hi Seafoam,

Great that you have started this support group, much appreciated on behalf of those who are suffering from this awful dis - ease.

I have DPDR for the second time in my life, last was from 2007 - 2013. This time I have it from being poly drugged last year with psych medication, so got it before tapering off Ativan basically a year ago, which I am still tapering the Ativan at present.

I can vouch that there are different levels of DPDR, and this time I have it really bad. Mine leans more towards DR, but have a few DP symptoms. I dont feel any emotional connection to the past, family,my own child (which is the worst), and each day is a complete haze.Short term memory is poor, it feels like I am on a 24/7 psychedelic trip (never done psychedelic drugs before though), and find it hard to motivate myself to do much, as I have become much of a recluse and become agoraphobic, as the world looks too unreal. My DPDR comes with a lot of visual disturbances, including photophobia, everything looks dim,blurry vision, at night I have night blindness and my brain cannot seem to take in a large panoramic view. I seem to be hyper sensitive to any input to the brain, be it vision, light and sound.

I find if I dont keep my brain active during the day, somehow, I just dissipate into silence, and my mind goes blank. Unfortunately socialising has kinda gone out of the door, as the DPDR comes comorbid with huge depression and very high anxiety, so not good at entertaining and holding long conversations. This from being a total A-type personality and chatter box...I am completely the opposite right now.

Its weird having DPDR fullstop. Nothing is logical, intrusive thoughts are abound and if you think about it, and how its impacting your life you go into a complete panic and ones anxiety shoots through the roof. I can land up having continual high anxiety throughout the whole day, until I eventually go to sleep.  They say DPDR is caused by drugs or incredibly high anxiety, which sends us into the "fight or flight" mode (amygdala part of the brain). So this is a paradox, as to cure, one has to accept and become complacent to the DPDR symptoms, which is very difficult, especially when one has it so bad you cannot even work. This causes even more looping anxiety.

So how does one get out of this continuous anxiety loop? I know from my previous time of getting DPDR part of my cure was distraction, and I fell in love then, which started positive hormonal changes which seemed to lead me out of DPDR then.

This time, my whole downward spiral started because of a bad marriage breakup, which toppled me into depression. Hence why I went on medication, firstly Ambien ,as I was not sleeping, then benzo's added for anxiety, then an anti depressant to try and kick me out of anxiety and depression. Well the medication just made things 10 fold worse, as I had a seizure on the medz, and got DPDR overnight. Only to have to taper off all the medication, and land up with benzo dependency, tapering off the benzo and landed up with the worst level of DPDR I have ever experienced in my life.

It's left me in a prison, trapped in my body and mind, with the worst Sx's one can imagine. Left me dependant on my family, and trying to fathom a way forward out of this without any guarantees, as DPDR is complex and there is no pill or known cure.

To say I have to keep my spirits up, and have hope is big effort daily. At the moment all I can do is try my best to distract myself away from the Sx's. Which is a huge challenge, as i have so many.  (This coming from a person who always had a very positive view on life). One of the biggest Sx's s I deal with apart from the vision issues and high anxiety is lethargy and my body cannot seem to do temperature regulation well. It feels like I am 20 degrees higher than the actual outside temperature, and live in the Southern hemisphere where the average temperatures are around 90 Deg F at present. I used to be an avid outdoor hiker, now I find it difficult to get out of the front door as my brain just somehow cannot handle the sensory overload from our natural elements.

All the advice given out there for DPDR and benzo withdrawal is to exercise to get ones  endorphins going and eat healthy. Yeah, I get it, and have done all the basics of cutting out carbs, sugar & stimulants,  eating natural organic foods with high nutritional value, but trying to do cardio exercise is a challenge for me, especially when you feel very dizzy and highly anxious. I manage about a 1,5 km walk each day which is a huge challenge.

For the sufferers of DPDR, we need a lot of encouragement. As take the Ashton manual add all the symptoms from benzo withdrawal and times that by 10 when one has DPDR. Its no joke, its a serious daily struggle.

So this support group is really needed.

All the best of recovery to you all suffering, and thank you again for starting this support group to reach out and let us all share and deliberate our experiences.

hi cyberA! welcome and i'm glad to meet you .

i will share my own past to present experience with DPDR for the purpose of the group as well as to just share- if it is helpful to you or anyone. i will put my past experience in quote so that my seperate response to your post will remain separate.

i have been dealing with DPDR (mostly DR until i jumped) constantly since the very first two weeks of starting benzos in early 2018. before that i had only experienced it once- december 2017 on a bad trip on cough syrup as a teenager, mixed with serotonin syndrome from an interaction. i hated the feeling and thought i was going to die. eventually it went away and i swore i would stay away from anything that could make me feel like that again. however the experience messed me up so bad that i got on the medication train and was prescribed prozac, zoloft, lexapro, etc. one after another. tried one called hydroxyzine and it actually reproduced the DPDR once again, for a few hours. couldn't even drive. eventually i was trusted enough to prescribe me ativan. within the first two weeks, without making the connection, i had mysteriously passed out at work, kept complaining of feeling extreme exhaustion, had strange mood swings totally unlike me... and these strange moments where i felt like i was "hit" with a burst of unreality for a few seconds, not knowing where i was.

 

of course i never connected the dots for a LONG TIME. a month later (june 2018) i was in a severe car accident, hit by someone plowing through a red light. my car flipped and rolled many times and i was lucky to be alive, with just a concussion and some glass injuries from crawling out of the totaled car. after the accident, i couldn't seem to process it- even more than would be expected for trauma. it just wouldn't click as real. to this day the accident has never clicked. i felt more and more out of it, having mood swings, feeling nausea and anxiety like never before. still having those bursts of DPDR randomly. i got blood test after blood test, got prescribed xanax, kept going unsure of what was wrong.

 

i actually blamed the antidepressants before anything else. never once blamed the benzos- i didn't take them every single day so i thought it couldn't be that big of an effect. in august 2018 i had my first DPDR panic attack. to this day it was probably the worst feeling i've ever experienced, mostly because i had no idea what was going on. i tried to drive and just kept panicking and panicking. had to call my dad to pick me up- had no idea how i got where i was and if i had even drove there in the first place. when i got home, i paced around for hours in circles, splashing water on my face and feeling like i was floating. after that i stopped driving, stopped working, cancelled my upcoming fall semester in college. i couldn't bring myself to leave my house- only to go to the ER did i ever leave, and it was horrible. i went to the ER 10 times that month and kept taking more xanax to keep myself calm enough to get to the doctor and back. i lost 20 pounds from anxiety induced stomach issues, i wouldn't eat. nothing felt real and it wouldn't go away.

 

i convinced myself that i suffered a severe concussion in my car accident- and that post concussive syndrome was the cause of my issues. i was prescribed klonopin in december 2018 because i wouldn't leave my house- this helped for a decent while because the jump in dosage staved off what i now know was tolerance withdrawal. this went on for a year, i went to specialists for brain injuries. i felt hopeful for a while until my body got used to the klonopin too and started going into tolerance withdrawal again. i even tried to go back to college for a semester. then i found this forum in april 2019. i don't remember exactly how but everything clicked. i made a calendar of every "weird feeling/episode" i had been having since 2018 and traced the dates based on text records where i talked about them with my friend. every single episode was after may 24th, 2018 (my first ingested benzo). it was shocking. but i needed an answer so i went through everything in this forum and started my taper off klonopin- which i was happy to do since it made me incredibly drowsy and tired. i went way too fast over two months and in june 2019 i woke up, went outside with the intention of going to a cryotherapy session, and realized i couldn't go outside once again. i just couldn't. my brain felt thick and full of fog. everything looked flat, like a tv set. the sky looked fake.

 

i went back inside and and haven't left since. i cannot do it. it's been almost eight months i think- my taper continued, get adjusted to be slower and slower as i was getting incredibly weak and ill. i was in shock for the longest time that the benzos caused everything the whole time. the DR was constant but sometimes it would get worse. i learned to remove MSG from my diet which helped stave off those worse episodes. i learned to just cope. in october 2019 i reached 0mg and finally jumped- within two weeks true depersonalization set in, which i had never felt before. i woke up one day feeling trapped inside what felt like a foreign body. i can assume since it was two weeks after i jumped, that was when my body fully eliminated the drug (two weeks is about right for klonopin to leave completely) and this was a shock response from my body. it is still going on to this day. i felt like i was going to tear my skin off to "let myself out" within a few days of experiencing the DP. thankfully i learned to cope but it is still horribly claustrophobic. now i am experiencing both DP and DR. in january 2020 the DP got another 'level' worse, and once again after my favorite pet died suddenly in february (which i assume caused a wave). as of this week it has gotten worse again- i think it's because i'm eating MSG without knowing though. sometimes i eat food that doesn't have labels. but yeah that's been my entire experience so far.

i relate a lot to the "24/7 psychedelic trip" feeling. i have never taken LSD either but i imagine this to be very similar in feeling minus the pattern hallucinations. i am so glad you mentioned the agoraphobic thing- that is what my main issue is, i cannot go outside. i have tried but i feel so disoriented when i try that i feel like i might just collapse. it induces a panic, looking at the "snowglobe-like" outside environment, and i feel like i'm trapped in a fake world. i am used to my tiny apartment looking weird so it's a bit easier to 'relax' if you can say that. i feel like the DR becomes worse in large spaces because there are more things around you to look weird and upsetting.

i am also hypersensitive to light, sound and vision. sometimes the walls have a warbled effect. i have earphones/earplugs in almost constantly, i can't deal with dead air and echoes. another thing that bothers me is i feel there is an invisible wall in front of me, really close to my eyes, separating me from everything. it's like a lack of depth perception (this same thing is what stopped me from driving a year or so ago). i also have blackout curtains in my room- bright light in the morning makes me feel unreal and overwhelmed. this has unwittingly caused me to stay up mostly at night and sleep in the day, which is irritating.

the "dissapating into silence" thing, i do it and think of it as voluntary dissociation. i try not to think about the fact that i can't leave and can't get better for a while- otherwise i start to panic and the 'trapped in body' feeling gets very intense. i am afraid that if i got panicked enough, i wouldn't be able to stop and might tear my eyes out, not kidding. that's why i try to zone out and pretend nothing is wrong. i try to pretend i'm choosing to stay inside and i could leave if i wanted, i am just choosing to stay. it's hard to keep up this dissociation when people around me are always telling me i need to go outside to get better.

i watch a lot of tv and movies, stay on my computer or phone. the flatness of a screen is supposed to be flat, so when i watch movies i almost feel normal, because it's the only thing in real life that is supposed to be flat. it helps keep me from going crazy i think. i also crochet and do multiple things at once.

i am really glad to hear your experience, know that reading it has brought me some relief because it really describes how i feel too. if i didn't know this was normal i don't know if i could make it. but i am 5 months off klonopin and encourage you that you can make it off benzos too, just don't push yourself. take it slow. the worst times in my taper were caused by a sudden taper cut that was too steep. hold if you need to.

-seafoam

Hi Seafoam,

Thanks for the welcome and sharing your experience and your insights. I have yet to read someones experiences and symptoms, which are resoundingly so similar. Being brought on by medication and stress, and this "invisible wall" in front of us, with 2D. And the way to distract is to watch a 2D television, as this what the world looks like, all too familiar...

Even though I survived this before 13 years ago and it took just over 3 years then to heal, it was not as intense as I am experiencing it now, and its definately not a case of being familiar with it as it is a walk in the park. The uncomfortable symptoms feel just as difficult if not more challenging than the last time I had DPDR. Im not sure if it due to being older, or that I have more responsibilities now than I had,and Im not functional enough to even work this time, which is extremely frustrating and does not do much to my confidence at all.

I sat on the forums for months the first time I got DPDR, and what I can vouch for is that the people who get DPDR are really sensitive good people. They usually are very creative, and tend to be deep thinkers and a lot of them are empaths. So I am not sure if this is a weakness or a strength, but damn we dont deserve to get this, as I am sure DPD'ers have so much to offer the world....we just have to get out of this crazy state!

I hope we get some more contributions and insights on this support thread, as I reckon so much more can be done to get us to heal. There is the theory of "taming the Tiger" which is our stress and anxiety level. Once we have mastered the art of doing this it should slow down the adrenal glands and nervous system which feeds the feelings of continuous "fight or flight" impulses from the amygdala part of the brain which fuels the symptoms of DPDR.

What I am doing about this is seeing a trauma councillor once a week, as this time I really am in a catch-22 where having experienced a really bad break up with my wife, and getting DPDR. It kind of leaves me in a vicious circle of high anxiety, which fuels on the DPDR. For example when I wake up, and my brain starts processing current reality, I am immediately reminded of the events of the break up, and unfortunately in the morning your cortisol levels reach the highest, which feeds adrenaline, so I basically wake up in a completely rush of high anxiety, which I try and spend the rest of the day, trying to calm down my nervous system. This in turn renders me dysfunctional for the day.

Prior to this, and why I initially took medication, I could not sleep due to  the break up, which lead to really bad insomnia.Firstly was started on Alzam to try and assist with sleep, then later Ambien.  Took the medication, and suddenly 10 days later woke up one morning with DPDR, and went into a continuous panic attack, as I now had "double trouble". This all led to complete total insomnia, as I was so highly revved up with anxiety and could not slow it down. So when approaching my doctor about this,  it was Lexapro added to the cocktail of medicines for depression. It all spirals out of control so quickly, and you as the sufferer just want to get better, and left at the mercy of your doctor and medication...which can all go so wrong very quickly too! So now its all about having to deal with neurotoxicity, and how to get one out of this mess! See

https://www.news-medical.net/health/What-is-Neurotoxicity.aspx?

I'm no doctor, but can definately vouch that it's toxic chemicals that one's brain is sensitive too, and that even being people who just landed up with extreme anxiety and panic attacks. By the time you having panic attacks the brain chemistry is firing bad chemistry, causing panic attacks. So one can see why it can either be drug induced or just anxiety induced.

So this time combined with DPDR, I have all the worst symptoms thrown in with it, severe depression, anxiety, loss of sense of smell and taste, the high volume of tinnitus emulating in both ears, the dizziness, very poor grainy  & dim vision, the very bad memory fog (blank thoughts) and a continuous high body temperature and I get extreme bouts of lethargy (exhaustion). This all on top of trying to reach out and feel the "real world", where even my own home town and parents home dont feel normal.

It is a real feeling of complete displacement and dissociated from what you previously felt as normal. This then brings in all those intrusive and existential thoughts...Am I still living? Who am I, as I dont recognise myself in the mirror, or feel any connection to photographs of the past? Is the world real? These thought patterns exacerbated by anxiety can send one down a rabbit hole of negative anxiety producing thought pattern. So we somehow have to switch off that channel and focus on other positive distractions, like a hobby and for those who can, ones job.

I literally had to learn to boil an egg again, and thats from a person who all his life had a passion for cooking, and even worked as a chef later in life! Prior to that I headed IT sales in large business, and ran a large sales team for almost 25 years. Now I find in difficult to read 2 pages of a book! These are examples just to show what a knock the brain can take.

Anyway, enough of my ranting, I truly home this thread will grow, and we will see a lot of positive healing assistance for all the DPDR sufferers.

God Bless.

Well, here I am chiming in.... This is my first experience with DPDR.... I actually felt it coming on before benzos.... but because nobody knew what I was explaining, I was given antidepressants that sent me into crisis, panic attacks, etc. I THINK my DPDR might be organic of some nature, but none-the-less, I appreciate the support here. I am still tapering. I can't feel emotions.

I noticed you say something about being empaths, etc. Yep... thats me right here. I miss my emotions so bad. I have a 13 year old that I cannot enjoy and help. I have an amazing husband whose love I cant feel.

I have not enjoyed life in over 7 months because of this.

Thanks for creating the thread...

Hi Seafoam,

 

Thanks for the welcome and sharing your experience and your insights. I have yet to read someones experiences and symptoms, which are resoundingly so similar. Being brought on by medication and stress, and this "invisible wall" in front of us, with 2D. And the way to distract is to watch a 2D television, as this what the world looks like, all too familiar...

 

Even though I survived this before 13 years ago and it took just over 3 years then to heal, it was not as intense as I am experiencing it now, and its definately not a case of being familiar with it as it is a walk in the park. The uncomfortable symptoms feel just as difficult if not more challenging than the last time I had DPDR. Im not sure if it due to being older, or that I have more responsibilities now than I had,and Im not functional enough to even work this time, which is extremely frustrating and does not do much to my confidence at all.

 

I sat on the forums for months the first time I got DPDR, and what I can vouch for is that the people who get DPDR are really sensitive good people. They usually are very creative, and tend to be deep thinkers and a lot of them are empaths. So I am not sure if this is a weakness or a strength, but damn we dont deserve to get this, as I am sure DPD'ers have so much to offer the world....we just have to get out of this crazy state!

 

I hope we get some more contributions and insights on this support thread, as I reckon so much more can be done to get us to heal. There is the theory of "taming the Tiger" which is our stress and anxiety level. Once we have mastered the art of doing this it should slow down the adrenal glands and nervous system which feeds the feelings of continuous "fight or flight" impulses from the amygdala part of the brain which fuels the symptoms of DPDR.

 

What I am doing about this is seeing a trauma councillor once a week, as this time I really am in a catch-22 where having experienced a really bad break up with my wife, and getting DPDR. It kind of leaves me in a vicious circle of high anxiety, which fuels on the DPDR. For example when I wake up, and my brain starts processing current reality, I am immediately reminded of the events of the break up, and unfortunately in the morning your cortisol levels reach the highest, which feeds adrenaline, so I basically wake up in a completely rush of high anxiety, which I try and spend the rest of the day, trying to calm down my nervous system. This in turn renders me dysfunctional for the day.

 

Prior to this, and why I initially took medication, I could not sleep due to  the break up, which lead to really bad insomnia.Firstly was started on Alzam to try and assist with sleep, then later Ambien.  Took the medication, and suddenly 10 days later woke up one morning with DPDR, and went into a continuous panic attack, as I now had "double trouble". This all led to complete total insomnia, as I was so highly revved up with anxiety and could not slow it down. So when approaching my doctor about this,  it was Lexapro added to the cocktail of medicines for depression. It all spirals out of control so quickly, and you as the sufferer just want to get better, and left at the mercy of your doctor and medication...which can all go so wrong very quickly too! So now its all about having to deal with neurotoxicity, and how to get one out of this mess! See

https://www.news-medical.net/health/What-is-Neurotoxicity.aspx?

 

I'm no doctor, but can definately vouch that it's toxic chemicals that one's brain is sensitive too, and that even being people who just landed up with extreme anxiety and panic attacks. By the time you having panic attacks the brain chemistry is firing bad chemistry, causing panic attacks. So one can see why it can either be drug induced or just anxiety induced.

 

So this time combined with DPDR, I have all the worst symptoms thrown in with it, severe depression, anxiety, loss of sense of smell and taste, the high volume of tinnitus emulating in both ears, the dizziness, very poor grainy  & dim vision, the very bad memory fog (blank thoughts) and a continuous high body temperature and I get extreme bouts of lethargy (exhaustion). This all on top of trying to reach out and feel the "real world", where even my own home town and parents home dont feel normal.

 

It is a real feeling of complete displacement and dissociated from what you previously felt as normal. This then brings in all those intrusive and existential thoughts...Am I still living? Who am I, as I dont recognise myself in the mirror, or feel any connection to photographs of the past? Is the world real? These thought patterns exacerbated by anxiety can send one down a rabbit hole of negative anxiety producing thought pattern. So we somehow have to switch off that channel and focus on other positive distractions, like a hobby and for those who can, ones job.

 

I literally had to learn to boil an egg again, and thats from a person who all his life had a passion for cooking, and even worked as a chef later in life! Prior to that I headed IT sales in large business, and ran a large sales team for almost 25 years. Now I find in difficult to read 2 pages of a book! These are examples just to show what a knock the brain can take.

 

Anyway, enough of my ranting, I truly home this thread will grow, and we will see a lot of positive healing assistance for all the DPDR sufferers.

 

God Bless.

when i wake up in the morning, every time, it's just a massive shock i have to recover from. nothing ever clicks, even though i've been dealing with this for a while, and so when i wake up to "this stuff again..." i have to calm down and tell myself to not spin out of control. every morning it's just "this can't be my life. this can't be real." and then i have to work myself into a dissociative state so i can get through the day without getting adrenaline surges every time my body feels extra unreal or my voice sounds like it's coming from the other side of the room.

i feel like all of us DPDR sufferers have the same daily routine trying just ground ourselves, failing to, and then trying to pretend we're grounded so at least we can get through things. things look like the inside of a snow globe sometimes and i can't seem to ever feel a little safe for even a second. my body truly feels like the most foreign thing in the world- so bad i don't even know where "i" am in the room.

definitely always having horrible brain fog too- i was a smart kid and had an above average IQ, always ahead of others and learning fast. now i feel so stupid it makes me want to cry. i try to read anything- namely stuff online and on the forum and it takes forever because i have to keep restarting the paragraph over and over and over again as i trail off. this is humiliating. i was also an artist, as you had a passion for cooking. i cannot draw anymore.... my skills have just collapsed backwards by years and i can't seem to get it together. not to mention the depression is so intense, there is nothing that could make me want to draw or paint anyways.

when i wake up in the morning anxious, i always feel like the benzodiazepine hell was just a dream and it didn't happen. every single morning i wake thinking it wasn't real, and i have to accept it all over again. this is truly hell. i feel so stale, so cold, so unreal that i wonder if i've ever been real at all.

Well, here I am chiming in.... This is my first experience with DPDR.... I actually felt it coming on before benzos.... but because nobody knew what I was explaining, I was given antidepressants that sent me into crisis, panic attacks, etc. I THINK my DPDR might be organic of some nature, but none-the-less, I appreciate the support here. I am still tapering. I can't feel emotions.

 

I noticed you say something about being empaths, etc. Yep... thats me right here. I miss my emotions so bad. I have a 13 year old that I cannot enjoy and help. I have an amazing husband whose love I cant feel.

 

I have not enjoyed life in over 7 months because of this.

 

Thanks for creating the thread...

 

i'm probably one of the most intense empaths ever- i am so empathetic i don't want it anymore. it's extremely painful. i get taken advantage of easily because even though i logically know someone is wrong, i still will crumble to their will at the first sign of emotion or sadness. or i used to more wholeheartedly- i feel absolutely empty now. still empathetic but in a very detached self, like i'm a second self inside the shell of who i used to be. the depression does not help- a lot of young people my age say they're depressed, but this is true depression. severe horrible depression, i cannot find even a slight bit of positive energy from any idea, any activity, any person. things that used to never fail to make me at least interested are empty now. we are suffering so much, i don't know how anyone suffers through this and survives to tell their success story. and the worst part is nobody outside understands in the slightest.

thanks guys for joining to talk. we need to definitely share so we can get through it.

-seafoam

Hi, excuse me for being brief, just got a quick moment to type.

Hey ImComingUp, welcome and thanks for joining the discussion group. Sorry you also going through such a rough time. DPDR and tapering off Benzo's is not for sissies. We all just have to hang this out, and get through it, its the only way! I noticed you said you saw it coming on before Benzo's, so did you experience it while you were on Benzo's or when you started tapering?

Seafoam, qestion, you mention in your signature that you took .5mg Ativan after brain damage? Have you gone through a TBI, or may I ask what sort of brain damage are you referring to? 

When you mention "Massive shock in the morning" I get it totally -> Our cortisol levels are highest in the morning which brings on an adrenaline surge, especially if we stuck in a highly anxious state, it completely sets this continual bad negative pattern for the day. Im convinced there is an OCD issue here with DPDR, as the brain program that runs in the morning when our brain is booting up (while we waking up_ seems to run a negative consistent stream while "boot of the brain" happens which keeps up the high anxiety loop and in turn persistent DPDR.

Brain fog, memory issues, I struggle very badly too...It's been a huge issue. I used to run a Sales team, be on the ball all day, communicate on 3 different devices, now I scratching my head, trying to work out what I did yesterday and who I am! Memory is shocking and it seems my IQ has dropped considerably.

Comorbid depression is yuck!...Me too...think of all the worst things, all security seems to have gone and I have to go through the depths of Hell everyday, its a real battle!

Anhedonia with depression... I've got it again this time and its seems I have the inability to feel pleasure in normally pleasurable activities, its become a battle on all fronts! I also have to calm myself down and try distract from the reality of what is going on, and just try and survive each day. Do you go through the same thing as me, and really hope you wake up better and this was just all a bad dream?

One thing I know for sure is that I did survive through such bad depression twice before...so its just a confirmation that we can get through these really deep doldrums, its just a matter of time and being patient and try loving and nurture yourself a bit more each day. It takes time...that I know too, but we do heal...

About being empaths, we need to learn about setting boundaries, otherwise we just walked over. This does not do much to ones self confidence and mood neither when this happens.

Sending lots of love and healing. Hang in, we going to conquer this!

CyberA

Hi Seafoam,

FYI, I see there is an existing DPDR support group on BB -> http://www.benzobuddies.org/forum/index.php?topic=184618.0

I was just wondering if you wish to call this thread  [ depersonalization & derealization support group 2020 ] or ask a moderator what you could do ?

CyberA,

I felt it coming on before I started ativan. Im having histamine issues and think I was before but nobody recognized it.

Hi, excuse me for being brief, just got a quick moment to type.

 

Hey ImComingUp, welcome and thanks for joining the discussion group. Sorry you also going through such a rough time. DPDR and tapering off Benzo's is not for sissies. We all just have to hang this out, and get through it, its the only way! I noticed you said you saw it coming on before Benzo's, so did you experience it while you were on Benzo's or when you started tapering?

 

Seafoam, qestion, you mention in your signature that you took .5mg Ativan after brain damage? Have you gone through a TBI, or may I ask what sort of brain damage are you referring to? 

 

When you mention "Massive shock in the morning" I get it totally -> Our cortisol levels are highest in the morning which brings on an adrenaline surge, especially if we stuck in a highly anxious state, it completely sets this continual bad negative pattern for the day. Im convinced there is an OCD issue here with DPDR, as the brain program that runs in the morning when our brain is booting up (while we waking up_ seems to run a negative consistent stream while "boot of the brain" happens which keeps up the high anxiety loop and in turn persistent DPDR.

 

Brain fog, memory issues, I struggle very badly too...It's been a huge issue. I used to run a Sales team, be on the ball all day, communicate on 3 different devices, now I scratching my head, trying to work out what I did yesterday and who I am! Memory is shocking and it seems my IQ has dropped considerably.

 

Comorbid depression is yuck!...Me too...think of all the worst things, all security seems to have gone and I have to go through the depths of Hell everyday, its a real battle!

Anhedonia with depression... I've got it again this time and its seems I have the inability to feel pleasure in normally pleasurable activities, its become a battle on all fronts! I also have to calm myself down and try distract from the reality of what is going on, and just try and survive each day. Do you go through the same thing as me, and really hope you wake up better and this was just all a bad dream?

 

One thing I know for sure is that I did survive through such bad depression twice before...so its just a confirmation that we can get through these really deep doldrums, its just a matter of time and being patient and try loving and nurture yourself a bit more each day. It takes time...that I know too, but we do heal...

 

About being empaths, we need to learn about setting boundaries, otherwise we just walked over. This does not do much to ones self confidence and mood neither when this happens.

 

Sending lots of love and healing. Hang in, we going to conquer this!

 

CyberA

hi guys!! sorry i haven’t been on much i’ve been going through a wave that i expect 2 days before my period until two days after it’s over, it’s always the hardest time of each month for me. been dealing with horrible migraines and increased DPDR, have barely left my bed out of disorientation and anxiety. but yes, i was in a car accident (the one i described at the very first few posts in the thread!) and sustained a severe concussion/mild TBI. i used to blame that for what i now know to be benzo withdrawal symptoms. i don’t believe it wasn’t an issue at all- i did have a large bump on my head for a while in the hospital- but i know now it isn’t as important  or responsible for my symptoms. i should probably change my signature to be a bit more updated and straightforward.

i have experienced and still experience all those things you mention. the depression, which has often come in “attacks” similar to a panic attack, has been the hardest to get through. sometimes i get s rushing, strong horrible feeling in my chest that i cannot keep going for even one more second, i just can’t, and suddenly there is no way to convince myself i can. i have found that trying to tell myself this is just an illusion and i can’t try to convince myself, but rather just sit and don’t think until it is over, works the best. every time i have one of these i make a tally mark on my personal notebook cover and then i can look at them next time and remind myself how fake the feeling is.

about the old thread- we could come up with a name for our specific DPDR group. but since that group has been mostly inactive since 2018 (only three posts since) we should be okay. we can discuss some name regardless though for us

Seafoam, I would love to join this group!

i’m so glad!!! you are welcome here and i hope you are feeling a bit better than not today

I would like to propose a thought that could be a trigger for some. Please let me know if it is safe to do so. I do not want to trigger anyone, however, I have been doing immense research and I am also in a group for benzo and past benzo patients who have developed MCAS. Like DP/DR, not everyone gets MCAS with w/d. That leads me to the question of WHY?

It is the WHY for both groups that I would like to discuss with you ladies/guys. I know it is common to get some dp/dr from w/d but I am concerned about the reason some of us have it during use, and for extended periods of time past.

If you are open for this discussion here, please let me know and I will post a link that is part of my thoughts on it.

Please listen to this link. Again, it could be a trigger. For those who have chronic, on-going symptoms... it could benefit you. I get triggered by it, but I know that I need the information to heal.

the last few weeks my existence has felt so horrible wrong and unnatural. the way i'm sitting in my body, the way i look down and see my hands, it feels completely wrong and foreign. i am getting very panicky over the last few days especially. i am hoping it's just a wave but every time it gets worse i feel like i can't take much more of this.

-seafoam

Absolutely the same, i can't take any more of this, getting worse and worse.

Sorry, but i won't be listening to anything that might trigger me at this point Im Coming Up. A fairly straightforward question, what is MACS, if you can't tell me what that acronym means im not interested, seems a bit suss that i have to listen to a triggering link to find out. No thanks.

I BELIEVE that a lot of people who are protracted or PAWS actually have MCAS, Yes... Mast Cell Activation Syndrome.  Thank you Pamster. I have not been signing on because I have been focusing on how to get US better. MCAS often has a root, like depersonalization, in Lyme Disease and Mold Illness (not to be confused with mold allergy). Often times, people get MCAS or DP/DR when they have Mold Illness or Lyme. Neither of these illnesses are being diagnosed or treated by mainstream medicine. Dr Neil Nathan and Dr Sonia Rapaport are two physicians who are actually treating these illnesses at the root. They are from a group of Drs who believe mold illness is the root of many chronic illnesses, including POTS, DP/DR, MCAS, MCS, CFS etc and the reason many with Lyme does not get better for some. I basically just shared all of the triggers. So, if it doesnt upset you to hear that you could have another underlying illness causing you to be more apt to have DP/DR then you should be good to watch the link. I chose the least triggering one for this group.

Actually i am starting to agree with you and so is my Dr. Bwd has caused me to have 2 strokes (no previous health issues) which all the neurologists and cardiologists are attributing to my severe bwd,  and im now being investigated for an auto immune blood clotting disorder which my Dr is also researching as a possible link to MCAS. At the very least she believes my food intolerances that have arisen since my stroke last August  are caused by histamine intolerance and excess production. She believes that the 2nd stroke has injured the histamine receptors and it is documented by the Stroke Foundation Australia that food in tolerances are common after a stroke for that reason. I had no dp /dr until the 2nd stroke.

Im now on a low histamine diet with much improvement and i did a test by eating half an avocado which is high in histamine, wow, within half an hour i had severe sxs back. I'll be getting a blood test for MCAS once i know if i have the clotting disorder, that will require Warfarin so that needs to be addressed first,  but until then im going to stay on the low histamine diet and monitor the outcomes.

My Dr also believes that the chaotic neurotransmitter issues that occur in bwd caused the Afib that resulted in the strokes, i researched this and found histamine excess to be documented as a potential cause.

I was cranky when i replied to your post, my apologies, im glad i came across it as it explains so much regarding my sxs. I can see now that a lot of what i thought were bwd sxs may actually be due to histamine release. At least that is something i may be able to exert some control over, so thank you for posting about this.

I have lots of updates but Im going to keep it brief here because I've posted in the past and I have posted in the Post withdrawal support board.

I have indeed tested positive for 2 mold toxins and bartonella. These cause all sort of nasty side effects including DP/DR.

I am now on 2 mast cell stabilizers, clartin 2x a day, histaquel 4 times a day, glutathione, and a b12 patch. You can get the histaquel and glutathione over the counter. Im taking a brand called Researched Nutritionals.

This mess is from MOLD and/or Lyme, not BENZOS for me. Make sure its not for you. My Dr is one of Dr Nathan's (youtube link posted earlier in this thread) colleagues. I found her on his website.

Best to you all because this mess is nasty! You are warriors....

(Side note: Im doing Psoas release and yoga from youtube since getting on the mast cell stabilizers and keeping up the low hist diet). Its definitely worth it.

I have lots of updates but Im going to keep it brief here because I've posted in the past and I have posted in the Post withdrawal support board.

 

I have indeed tested positive for 2 mold toxins and bartonella. These cause all sort of nasty side effects including DP/DR.

 

I am now on 2 mast cell stabilizers, clartin 2x a day, histaquel 4 times a day, glutathione, and a b12 patch. You can get the histaquel and glutathione over the counter. Im taking a brand called Researched Nutritionals.

 

This mess is from MOLD and/or Lyme, not BENZOS for me. Make sure its not for you. My Dr is one of Dr Nathan's (youtube link posted earlier in this thread) colleagues. I found her on his website.

 

Best to you all because this mess is nasty! You are warriors....

 

(Side note: Im doing Psoas release and yoga from youtube since getting on the mast cell stabilizers and keeping up the low hist diet). Its definitely worth it.

Hi ImComingUp,

I hope you don't mind, but I came across your post after searching for Dr. Neil Nathan on this site and I'm wondering who your treatment is going with one of his consulting doctors?

I just started reading "Toxic: Heal Your Body..." by Dr. Nathan and I feel (for the first time) that there could be a cure for what's happening to us after being exposed to benzos for long periods.

The chapter on mast cell is basically my life!

I hope you are well and healing rapidly and I really look forward to hearing from you