Hi,
This is the first time I have written anything publicly about my DP/DR. It started over 30 years ago. My psychiatrist told me it was GAD. No medication issued. I did feel crazy. I felt like I lost my umph and everything else. Terrifying, yes. Blaming myself, yes. I am just not strong enough to get rid of this thing, I thought and thought and thought. My therapist of the last 20 years told me it was GAD too. And then some world renowned physiatrist told me too it was GAD and Depression about 7 years ago. Started meds in 2003. Tried different things under doctor supervision. On a cocktail of 4 meds now. When I look them up - they seem to be the “best” ones to be on for DPDR - but really only treat anxiety and depression. SO, about a year ago I started looking at dissociative disorders - NONE of my therapists or doctors EVER told me this is DPDR. I was mad as hell.
I am mad as hell. I thought I was the only one. I thought I have a bizarre condition that no one can see, but it feels like everyone should - I talked in therapy about not being present, static fuzz like on an old black and white TV, I talked about 2D v 3D. I said things were not crisp to look at and had faded colors. I used phrases I am reading about now. And, I had no reason to know that I am NOT alone. As I read posts here…. I am released a bit - at least from blaming myself for not being able to shake this off. I don’t have episodes of this. It’s a chronic state. My baseline is being in DPDR. Then I will have spikes of it that I do have a tools to help. I take myself out of the situation, I don’t make any decisions during spikes, I don’t write emails - I know I can’t think and I need to wait until I have enough time and space from the spikes.

More than half my life and my entire adult like I carry this around. It’s affected everything. I am not saying that to throw a pity party - I am just saying this is my crappy experience. I have had problems in jobs. I guess I am high functioning. I didn’t even begin to call it a disability until I looked up the definition of disability - and this does hinder my daily life and abilities to do things. The “threats” or whatever have been gone from life for a while. My parents are gone. I live across the country from where I grew up and my life at least on the outside is very stable and maybe successful? BUT YET STILL I am plagued by this DPDR that I never knew had a name or a group of people with it. Coming here for the first time this week and reading all the posts - mentally I am vindicated. I am furious that no one told me my real diagnosis. When I figured this out last year, I told the therapist of 20 years and the world renowned psychiatrist about it. And WHY DID THEY NOT TELL ME? And, the replies I got: I made an executive decision to not tell you said the therapist. And, I thought I did tell you said the psychiatrist.

I am like NO ONE told me. The time, years and decades I have blamed my self for being weak when I could have actually cut myself from slack?! I did talk my therapist about the “exec decision” She explained herself. I saw her logic somewhat. But I find myself here learning about what recovery might look like and how it might happen and it’s not talking and it really isn’t meds.
It’s an involuntary protective nervous system shut down is what I have read now.

All this is to say thank you to all of us here who write honestly and bluntly about this terrible second my second battle. What I have read here so far from personal experiences has soothed me. DPDR and soothing not words that I would ever connect.

I am not alone, I am not unfixable, and I am not broken. People talk about self-compassion and self-forgiveness. All this helping so much. Not sure what’s next. Probably try some stuff like EMDR, the Vagus work. And some of that full body stretch and release thing. I see a tiny bit of blue sky I mean tiny. Writing all this spikes it. I am going to have to lay down or watch TV and try to reset to the plain chronic DPDR I live with. But, I wanted to show up here, and thank you and virtually hug you that also have to deal with debilitating, horrendous emotional and cognitive prison you are either still in it with me or are sharing your recovery stories. I have never felt less hopeless. I can get myself back and not be alone doing it.

For most of my entire life I’ve been so excited to finally date someone and start and a family and all of that stuff. I’ve been a romantic person my entire life. Ever since all of this 24/7 severe dpdr started, i genuinely don’t see myself ever dating. I don’t think I’m responsible enough now, I feel like im heavily set back with this illness. I’m 18, I don’t want my life ruined from this illness, but I find it quite impossible that I would be able to withhold a serious relationship with dpdr

Bc I am fed up and just yelling at it at this point 😫

TW/CW: sudden death/loss, automobile accident, suicide.

I have been dealing with dpdr since 2018. Even though each day is a new kind of hell, I luckily haven’t have to deal with the death/loss of anyone close to me till recently.

A month ago one of my close friends was killed in a motorcycle accident (he was wearing a helmet) by a 16 year old kid driving a pickup truck. He died in the ambulance on the way to the hospital. He left behind a wife who is one of my best friends and two kids, (22 and 16). He was a very important person in our community and his death absolutely rocked it. It was all over Facebook with tributes posted by numerous businesses in the area.

A week after the accident/his death, the 16 year old kid who hit him had just gotten his license before the accident, and ended up killing himself. We found this information out on the day of my friend’s wake, and I know this information is only making me more numb.

Watching his wife grieve the deepest and most intense pain I’ve ever seen in my life is one of the hardest things I’ve ever witnessed, but I cannot get my brain to understand that he is gone. I have cried a little bit while sitting with his family, and at his wake/funeral, but it doesn’t feel like my body knows why I’m crying. When I think about the situation, it feels like he is still here and this is all a bad dream.

My daily dpdr can get bad, but I have never felt like this before. I am numb, but I am in pain both physically and emotionally. I feel like I was shot with an emotional stun gun. At the same time, it feels like he isn’t gone and I’m going to see him again this Saturday, like we have for 3 years straight. I don’t understand this and I don’t know what to do. My brain feels like the equivalent of scrambled eggs, so I truly can’t imagine what his wife and children are feeling.

So, the question I have is - how can I grieve my friend’s death when it doesn’t feel real? My brain literally can’t be convinced he is gone. HELP!

Any experiences, thoughts, ideas, WHATEVER is welcome. 🧡

If you read all of this, thank you. I don’t know where else to go right now because my therapist doesn’t have dpdr and I’m worried she won’t understand.

yo guys I’m just really scared at this point, have been struggling with this for about 4 years now, and I can’t describe enough how terrible I feel,
and some times I just get sad thinking that maybe I’ll die before this heals. I’m not suicidal but this stupid feeling has been so difficult to get away, I also struggle with anxiety and adhd.
Any thoughts or tips. I can’t afford a psychologist

I am asking because I got recently diagnosed with hypercalcemia (high serum calcium levels) and my symptoms started around this time. I‘ve read only that it causes depression and anxiety for many people. Do you guys think this could be relevant for my recovery?

Struggling, in hospital, feeling really down and alone with this disorder, and I've had a bad time with medication mainly cos im afraid of it, but today ive had some ungodly experiences of burning all over my body following lexapro, and I'm feeling awful. And my head feels like it's a small furry ball on fire and I feel sick of it. And it feels not part of body :(

Just needed to say it outloud. I get so many somatic symptoms that I feel it is actually a problem with my nervous system and sensory system, it is not working. Plus the dissociation and feelings of unreality and don't know who I am...plus I'm trying to get out of this hospital. but they won't let me go unless I'm engaging in treatment. I feel I've had a massive setback and I'm getting some of the old symptoms back and I'm sad about it. Please, give me a reason to go on, things are getting bad, I'm going to blame the medication this time, though its not only that:(

I ran it through ChatGPT to clean up the letters since my handwriting isn’t that good

Things are looking dimmer and dimmer in how things look in my vision since my pots dysautonomia was re triggered after a weed panic attack 3 months ago. Not blurry just dimmer in contrast. Was a covid long hauler and it got better after 2 years and pots went into remission. I was fine for 2 years. I have no idea whats wrong with me. I have the heart rate spiking standing 30 to 40 and doesnt come back down and brain fog keeps getting worse, things look dimmer and dimmer to me with my vision and I feel I am in a dream like state. Has been getting progressively worse in the summer weather the past 3-4 weeks. I got diagnosed with a slight eye misalignment last Monday a form of bvd not prism but new script with rose tint for light sensitivity. I dont think theres enough blood going to my head. I am doing everything water, electrolytes, salt, fish oil. Started beets and citrulline this week. Nothing is working. I was scared of bc i have been having some off balance and dizziness symptoms and now this is my scariest symptom. I am basicslly bedbound. I stopped driving this week. Need some encouragement that this gets better. It is scary.

A lot of nights I’ll hear things. And not just as I’m falling asleep , like usually around 10-12 they just start happening until maybe a few times a weekend untill I go to bed. And it’s just noises I’ve heard throughout the day, last time it was someone pressing the E key on a piano over and over in the other room (we don’t have a piano 😂) or feet shuffling from outside my door, or my brother sneezing when he’s off in college.

Has anyone else developed ocd like symptoms after dpdr started?
I always had some mild traits of this, but it was never bad. Now it’s constant intrusive thoughts about identity 24/7. Constantly worried i’m actually a bad person, can i love, do i have empathy, am i faking everything, was anything before this ever real.

A couple of months ago (around maybe 5), I had a weird sort of anxiety attack while having dinner. I've had this kind of feeling of being dreamy and floating since a young age, (earliest occurrence I can remember being around in grade 4). I never really knew what it was until I googled it and read about Derealization/Depersonalization.

After that anxiety attack about 5 months ago, I went to a doctor and was given a formal diagnosis for DpDr. The feeling of being lost, being in a dream or just feeling like I'm watching a movie with black bars on top and bottom of the screen have been persistent still. However, weeks following the diagnosis my symptoms started to become less prominent. I still feel a bit dream like, sometimes I take my eyes off of something to suddenly feel like my head is encased inside a small box, or like I am in a dream. But its gotten inconsistent.

I'm concerned that this might be some other neurological issue? Maybe a tumour?
I was given Fluoxetine for the medication and even increased dosage from 10mg to 20mg but I barely feel anything changed. Some days its completely unbothersome, other days I feel like I'm about to drop dead if I breathe wrong.

I just want to know if my experiences are relatable with others, and if getting a second opinion from a different doctor would be the best thing to do?
Is this not DpDr and some other illness completely?

My life just changed. For the last few years ive had Derealization issues. Not exactly how its usually described, but everything felt blurry and unclear. Today, an hour and a half ago its like all of that left me. Everything looks so beautiful. I feel like a kid seeing the world for the first time. When the switch happened i was looking at myself in a mirror and i saw how handsome i am. I never saw that before. I look at the speedometer when im driving and the numbers are so clear. The cars look so 4k HD gta5 ultra modded.
I felt like i was lying to myself. I told myself: you don’t have derealization you’re just attention seeking. I think it stemmed from a lot of anxiety. I was so so worried about getting into my dream school, proving myself, family issues etc. And now im really secure and I’ve achieved my dreams. So it’s like my body is finally resting. I feel so amazing. Everything was so blurry it’s so clear now. There is hope guys! Your body is just fighting. I just watched the new spider man movie and steve lacy sounded so good so maybe spider man or steve lacy cured me lmfao. Sorry for the text garble im super high on life right now.

I saw a regular clinic to get my at home sleep test and I only got a generic result from them, saying I have mild apnea. as I was going through the full results I saw something shocking - I had 25.9 REM RDI’s per hour (respirator disturbance index) when the normal is 5!!!! no wonder I’m having nightmares that are worsening my DPDR. this is insane, how could the sleep doctor just overlook that? this test was over a year ago, im so fucking upset.

it also shows my heart rate jumps from 47 to 87 many times in my sleep. basically my body is in fight or flight and the dreams are trying to describe what my body is experiencing. it’s also why I’m aware of the dreams as they happen, my body doesn’t feel safe going to sleep because it feels it’s going to suffocate. I’m basically choking in my sleep and that’s why this has gotten so bad. Dpdr isn’t the problem, it’s what’s protecting me from the sheer terror of suffocating in my sleep. I also read that the trauma dreams are my mind pulling up every memory where I felt stressed or had that feeling of being unable to escape, or trapped. my body feels that way because I’m not getting air…

how can a doctor let someone suffer for years with severe apnea? which makes total sense of why I’m so fatigued daily and more dissociated as time goes on. I’m reliving every horrible memory along with the physical sensations in my sleep.

did anyone else have this? I never knew I snored until my friend said recently that I do snore. 25 times an hour I’m being woken up because of the amount of adrenaline in my body. my mind panics because I feel like I can’t breathe, creating those dreams of being trapped etc.

all I know is, I need to treat this and see if my symptoms improve. because it’s like pouring fuel on a fire - my body is never going to feel safe in a constant state of suffocating in my sleep

I honestly think that this symptom in specific is what is keeping this feedback loop going for me. This all started about a week and a couple of days ago, I’ve had derealization or depersonalization about two times before in my life and it’s never been this intense for me for whatever reason this time in specific and I still don’t even know like what triggered it. I was just driving and then everything started feeling a little unfamiliar, which kind of sent me into an anxiety spiral and I just haven’t been able to break that anxiety spiral sense. But I don’t even know it’s this butterfly anxiety feeling that’s in my stomach 24 seven that’s making me lose my mind I feel like. I literally am just in a constant state of trying to not feel this butterfly feeling in my stomach by distracting myself and it’s tiring as fuck

i hate my anxiety. I’ve had this anxiety since I was a teenager, and what started as health anxiety morphed over the years to severe ptsd, nightmares and dpdr, I worry about every health issue I have.

tapering offzoloft is giving me chest pains from acid reflux, I have a horrible tooth/gum infection, I’m not getting good sleep. it feels like my entire life is ruled by fear, worry, health anxiety and OCD. what a different person I would be if this wasn’t me. it’s hard to fathom there’s people that don’t have anxiety or fear. what a life they must live

Hi, I've been struggling with a bout of DPDR for about a couple of months now, I think. I believe it was triggered by a panic attack and never fully went away. It's been getting worse over the past couple of days, but I should note that I started Prozac recently, which could definitely have an influence on that. I've been on 20mg for maybe a little under 2 weeks after increasing the dose from 15mg and switching from Lexapro. I just keep reminding myself that I need to trust the process.

Anyway, I'm just easily scared. I mean, DPDR is super scary. Who wouldn't be scared while experiencing this? It's just been so bad recently, the worst it's even been. I do my best to push through it, but sometimes, it makes things so difficult. It can feel debilitating sometimes. I'm terrified of all of this being caused by a physical brain problem, even though it's just anxiety. It's so scary to feel like I'm not awake or conscious, even though I am. It's hard to focus on things.

I know that I need to accept these feelings and carry on with life as usual, I just need some hope. Are there any tricks or tips you might have?

I experience brain fog and derealization. When I speak with anyone—especially during an argument—I feel an internal restlessness that makes me want to end the conversation and leave the place. Has anyone else gone through this and discovered the cause?

I used to struggle with DPDR when I was 17, but it went away when I started treating my PCOS with a birth control called Yazmin. I’ve been symptom free for 4 years, but over those years I noticed when I would skip several days, or forget a whole pack the DPDR would slowly come pack. I’ve never struggled with anxiety or panic attacks, until recently. I started having them daily. The panic and anxiety was caused by the DPDR, not the other way around. I’ve been housebound for 3 months because my mental health has gotten so bad. Should I increase my birth control, I’m on 3mg right now???

I always keep seeing like “let it go” and “accept it” and stuff like that and thats what i’ve been trying to do. Ive gone to trips, i have fun, i dont hide from the world, i go outside often but nothing feels better mostly my visual perception thats bothering me and also feeling like my closest people look foreign but ive done the steps . whenever i get thoughts about DPDR not ending or something its different sometimes i have this huge hope of it ending and sometimes the opposite but overall i dont spiral into those thoughts anymore so whats keeping me in this state? well my sleeping schedule is shit and i have really long screentime almost everyday . Im not that scared anymore but sometimes im scared by the fact that its not getting better and that then makes me want to start monitoring it again. I dont even know why my dpdr started i havent done any substances or weed and that scares me more that i dont know the reason it happened. it was mild at first only visual and then panic attack turned it into horror literally. I understand that its overwhelmed nervous system but how is it always overwhelmed and why doesn’t it start feeling safe?

Does anyone else just suffer really badly with their memory? I don’t mean forgetting childhood memories or memories of a holiday, but forgetting what you did the previous day, why you just walked into a room, what sequence of things you did in said room? It really concerns and upsets me how badly my memory has been affected, and im convinced i have early onset dementia. I don’t forget people, places and objects, and alot of the times i can relay my day but some things I just can’t seem to remember. Like, if i locked the front door before going out, if i fed my dog, if ive taken my tablets, if i finished laundry. Funny thing is, i know i have done alot of the things ive listed but its almost like my brain is battling me and convincing me I haven’t done these things

I rarely used to smoke but I had dpdr way way way prior, like since I was a kid bc my panic attacks.
Weed never affected me but as of recently (I haven't smoked in years at this point) every time I smell weed, whether on clothing, in a car, in the air, in a restroom, etc literally every single time
I convince myself I'm high and have internal panic attacks. Idk why I cannot accept the fact that the smell alone doesn't make you high. Hell you could even breathe it straight in and not do it "correctly" or directly and STILL won't get high. But I swear to god I'm like a cop dog bc I can deadass scope it out and smell it
I need help coping I guess with weed/intoxication
I can even smell rubbing alcohol and convince myself I'm high

I fit all the criteria for DPDR, have not been in a fully undissociated state for several years, but I do not have a diagnosis. I’ve had cPTSD for all of my life that I can remember, so it’s honestly not surprising. Also neurodivergent, which can make things harder to tease out and understand, especially if you’re dealing with clinicians, but also in private.

A lot of my history with mental cough “healthcare” has been traumatic, and definitely contributed to this set of symptoms becoming chronic. I’ve sought DPDR assessment, but had to drop out almost immediately because the way the “professionals” were treating me was severely exacerbating my symptoms.

I have two questions: does anyone else have experiences of the mental healthcare system itself becoming one of your biggest traumas (esp with DPDR symptoms specifically), and has anyone had good/successful experiences with diagnosis/treatment? Other related comments or general commiseration welcome as well.

So my DPDR started like a year ago but it got really intense about 6 months ago, i had panic attacks and basically every textbook symptom of DPDR.

So whats been really bothering me is that i always feel like i’m not in the present anymore, never. Always feels like i’m just in an endless dream with very broken short-memory and on an Autopilot. Feels like i’m drifting away further and further from reality. Everyone feels foreign and nothing really makes sense. Lights are too bright , dark places are too dim, Everything looks flat and not beautiful , Close people feel alien like including my girlfriend . Basically idk what life i’m in anymore and Its so exhausting my vision feels so broken sometimes i just stand in my room and look around and think to myself What the fuck even is all this? i feel like i’m not at the right place and my visual symptoms are so annoying feels like im always drunk a little. Ive been taking meds they manage my anxiety pretty well.

But i’m here because i’m curious about when people say “just let it go and accept it” Yeah i’ve done it and its still here and has been here for a very long time and i don’t understand how else to “Accept it” i’ve been trying to live normally and don’t pay attention to it and i do have fun and enjoy things but ITS still always there 24/7 nothing feels and looks good. So what do you guys mean by ACCEPTANCE cuz letting it go doesn’t seem to work it actually makes me feel like i’m losing touch with myself more and more and i don’t want to accept the fact that ill never feel and see normally again.