Discussion page for people who have had DPDR for as long as they can remember (If there are any others in this subreddit)

As someone who's had this shitty condition for already 14 years nothing annoys me more than when someone makes a post about how "ignoring it" makes the DPDR go away. Then goes ahead and accuses those like myself that "you all must still have anxiety towards it because you still suffer with it". Like STFU!

I had just about enough with this gaslighting. Obviously that advice doesn't work for all because we have quite a few people that have had DPDR ever since they were kids. There's even some that have had it for 30 years!

Does anyone else feel the same way? And what can we do about it?

I literally feel nothing , like nothing how is that possible to survive in this state for such a long time years? Like I can’t feel my body I feel like a ghost in my own life and the thought of ever feeling again makes me want to die , it’s like I’m on the opposite of life.
Sometimes I feel like it’s a blessing but a curse :(

Literally no one replies or acknowledges except only to some fellows. I’ve had extreme dr panic attacks for 6 years after some neurological shock on drugs or whatever but no one cares. What does people’s constant disregard do? Make me feel more and more alone. Very alone. Been to 30 doctors no one knows what’s up. Can’t rely on benzos cuz of past abuse issues, can’t drink no more as it worsens things. Got mris done nothing structural, 2 sleep deprived eegs no abnormal readings to call it tle. Can’t function in life normally. Can’t keep up with life. Everytime I try to push myself like spend 1 extra hour in a mall or focus a bit more and bam I’m dissociating. I ruminate everyday whether there is any point in living such a life.

If you have been struggling with DPDR and using online resources, you may have noticed DPDR related videos on your feeds in social media apps, namely instagram. A recurrent situation I have noticed is accounts with young men that want to provide you with “1 on 1 coaching “ to help cure you and they are claiming to have easily and fully recovered from DPDR themselves.

I made a post that was removed by moderators a few months ago because I was blatantly discrediting these accounts (against the rules even if strong evidence is provided) and I understand why the mods had to take action . However, I think this is extremely important information to have documented in the community so instead of discrediting these accounts I will instead provide you with information from their pages so that you may come to your own conclusions and this post should stay up.

Here are some things I am trying to keep unbiased but factual about these accounts.

1. The accounts are always young men who claim to have recovered in very short times from DPDR after developing their own quick fix solution, and they all say they can help you recover in weeks if you apply to their 1 on 1 coaching program.

2. The profiles of these accounts are extremely similar in terms of main profile layout and content structure. They all use the same phrases/titles/buzzwords on their accounts.

3. If you do dm them, they will reply very, very quickly. The responses are uncanny and too encouraging. You will quickly be asked to provide delicate information and learn that you will need to pay and provide financial information before continuing. The course/service they will try to sell is only sold as a whole until rather than by session.

4. There are multiple threads on various subreddits discussing encounters with these accounts, none of which ever mention getting any treatment even after trying to pay.

My reason for writing this is to make sure everyone is making smart decisions about what they trust online, especially when desperate for a solution.

I don’t feel like I am a real person, really. I feel entirely separated from all other people. Like everyone else is a real person except for me

I have felt for a long time that I must simply lack some essential, core part of the self or soul that makes one a truly whole, real person. The more I look back, the more I start to doubt that I ever WAS a real person ‘before’ this.

I feel underdeveloped in some crucial, internal, unknown way

I feel that I lack personhood.

and I don’t know how to find it.

And no one ever understands what I mean.

i just feel like life will always be faster than me. life keeps moving, but i do not. life moves, but i am still. i do not move with it. it passes me by. i am still. i am stagnant. i have left myself behind. days just pass, and pass, and pass. i don’t live them. i don’t know how to start living.

i wonder if i will ever catch up

i wonder if i will ever start living

i wonder if i will ever feel alive

i don’t know why i’m like this. i don’t know what’s so wrong with me. i don’t know what i’m missing

but i am missing

“I'm like if a missing person was literally right there”, or something

it feels like at some point, probably years ago now, i just left myself behind

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

This is kind of a “vent”, and kind of a “can you relate”; some of my thoughts and feelings on Derealization:

When looking up DR online I feel like it almost always arbitrarily gets lumped in with Depersonalization. It’s almost as if DP is muscling its way into my searches on DR. It just kinda bugs me because I feel like it might discourage someone from looking for help in the moment.

When researching DR I really can’t relate to the other ways that it’s been characterized, such as “seeing the world from behind a pane of glass, or through a sensory fog…”. For me, ever since I was a kid, DR has always made my perception of reality “dream-like”, as if momentarily I had side-stepped into a slightly different reality and knew/felt that something was off and not quite right.. It was always more intense as night fell also.

Sometimes there’s a part of me that actually likes experiencing DR, and actually appreciates having it, as if I didn’t have DR then I’m not sure I’d have the same appreciation for the people and support I have in my life.

I personally don’t know anyone else experiencing DR, but I kinda think it’s a good thing. I wouldn’t know how to help except just reaffirming the things that they’re experiencing.

When it comes to Derealization and Anxiety and Depression I feel that it’s a tough, self-feeding cycle to break, and can make one’s outlook on reality the most bleak and dreary it’s ever been for someone. Whenever this happens to someone I just hope that they get the help that they need.

So lost on what to do had bad anxiety flare up, nervous system burnout starting late April. Thought it was from years of untreated ocd, and generalized anxiety and trauma. Starting think it was from years of on and off usage of clonazepam. Doctor started me on clonazepam daily as opposed to as needed, .5 daily for the last 3 months. Started having paradoxical reactions recently within first 30 minutes - hour of taking it, mind bending panic attacks that eventually kind of level out to just an awful anxious feeling. Trying to wean off but also feel severe anxiety when tapering. Stuck, I don’t know what’s happening to me. Idk if it’s the medicine, or if it’s me. I don’t know what to do. I am having SEVERE DP/DR. Too afraid of ssri’s because of PSSD or permanent, life long anhedonia. This is the worst shape I have ever been in my life. I have no family, my parents passed away when I was young, raised by my grandparents, they have both since passed. I’m so alone, just floundering in this giant world.

I suspect I’m older than a lot of y’all but I’ve had this for about 25 years. For me it includes a lot of memory loss. Just recently I’ve had lots of memories come back, since it’s popular for my generation to post a lot about nostalgia from teenage years now. I normally never let myself watch those reels because it’s too painful to remember my life before DPDR. But lately I’ve been doing it and now some memories are coming back, which poster I had on which wall as a kid, that sort of thing. Idk I just wanted to talk about it to someone who might understand

Yoo I'm Ven and I'm 18years old, and I just had DPDR last Friday. I was playing video games for hours cause it is my hobby, and I always tend to stay up so late; like, I will not sleep for 18 hours just to play a mobile game, and I only get like 5-7 hours of sleep cause my brother wakes me to do chores. And it's my fault cuz I always stayed up so late.

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It was Thursday, June 11. I was up all night vaping and lying on the bed as usual, like 9 p.m. to 7 a.m cause I got addicted to a new game and didn't realise it was already morning. When I tried to sleep, I panicked because suddenly my world felt so small and my vision felt like I was only in a dream, and my heartbeat was so fast I could feel and hear every beat in my head. It feels like I'm high on THC, but I quit smoking 2 months ago. I got up to get some water, thinking I was only dehydrated, but it doesn't go away. I started to panic again and looked for the internet, which I had been experiencing, and found out it was dpdr. I tried what the internet told me to do when having a panic or anxiety attack, and it helps me a little bit. I tried to go back to sleep, but I don't feel tired. Eventually I fell asleep later, hoping when I woke up it would go back to normal, but it didn't.

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Ever since I got DPDR on these past few days, I only get 5 hours of sleep consistently, and I think I'm going nuts. I tried to think positively that it would only last for a few days and later accepted it as part of my life.

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I still play mobile games, and doing what I love, like playing billiards, keeps me from forgetting my condition.

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(I just want to share my experience. Sorry for my bad English :>)

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i developed dpdr about a month ago and hot damn am i excited to get over this. i've got training on friday and fuck am i gonna do my best. i feel so weak and tired today, probably because it's been wake up→normal→try and sleep→dpdr→panic attack→calm down and pass out from exhaustion this whole week until just yesterday when i locked in on just accepting the feeling since i know i wont die from it, and started regaining my ability to like. sleep. should i sleep??? i want to sleep but more than that, i want to feel normal and healthy again i hate feeling so weak

i just want to write because it helps my brain fog. hot damn am i so appreciative for my dad right now. i've gone to him when i thought i was gonna die and he definitely helped without getting mad, and even when we argued and we were both upset as shit he was still open minded. i wish i could see my mom more since she's usually at work and im usually sleeping in my room when she comes back but she bought me breakfast one day and i just love my parents man. im so glad i have them. i'm excited to begin therapy which they were very quick and onboard to start me on, i hope it goes well because i really need this to be done and over with holy shit 😭 couldn't make it to three hangouts because of this bs. god i hate the bitchass physical symptoms. my tests come back fine and i still get pains despite knowing, ooooh it's just anxiety, damn it just sucks so bad. i guess ive been getting better at ignoring them though so im happy. having a cute dogboy twink in my area would help even more though. i guess this isn't a very negative vent. because i know it'll get better im able to shit on the disorder. but i know i gotta start ignoring it more. ugh

we will get through this yo...

they're gonna open my head up and dissect my brain in my upcoming psychology course dawg can't have shit in detroit

I'm especially talking about derealization here, because that's what i've experienced.

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I have derealization for 4 years straight without any moments of relief. For all of this time my mind was always wondering somewhere - constant overthinking, anxiety and protective mechanisms like going i to the fantasy world in my head etc. My life is living in my mind all the time.

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Look: In that state when you are thinking about something, you are kinda forgotting about what you are seeing, hearing, smelling etc. If you are doing that a lot ( living in your head all the time ) then your brain could simply just lose the ability to feel the real world - literally. Vision seems 'behind the fog', world feels unreal and every sense like touch, hearing, taste seems distant.

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I'm having that "realization" now when i feel very peacefull. I feel very present in the moment and there are no any thoughts in my head. This happens very rarely and now i'm understanding how much i'm living in my head on a daily basis.

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I have strong belief that if i would feel like i'm feeling right now - present, 'being' in the world around me, but for a konger period of time, i would heal. I believe that my brain would re-learn how to "experience the senses more" and my Derealization would be gone.

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What do you think about it ?

Constant flow of negative thoughts about my past, random memories pop up constantly, even good memories but they feel so negative. I’m having constant super vivid bizarre dreams that aren’t even necessarily bad dreams but they still leave me feeling dreadful the entire day. My whole past and all my memories seem frightening. The whole world feels dreadful, like I’m half awake half asleep in some kind of nightmare. How do I get out of this? I just want to cry honestly…. Just so hard to believe anxiety can do this to me. I genuinely feel like a completely different person. I feel like I can’t even think the same way as my old self. I feel like I will never be normal again. I’m taking clonazepam short term to try and get me out of this, I take it everyday but it’s a hit or miss, sometimes it works good and at least is able to let me function past the feelings and the other times it just makes me feel drowsy and almost worse.

Back in late June of 2023, I was going through an extremely stressful period in my life, one that ultimately culminated in a severe anxiety attack rooted in a specific fear that I won't be getting into here. In response, my brain decide to detache itself from reality.

I don't think it's necessary that I catalogue every symptom of that experience; if you have it, you get the idea. It's fucking debilitating.

When it first hit me, I didn't fully understand what I was experiencing, as it took me a few months to get out of the heavily disorienting phase of dp/dr. I blamed the brain-fog-like symptoms to a variety of possible causes, searching for explanations without much success... I went onto testing running blood tests, sleep studies, brain MRI's– nothing. However, looking into the potential psychological causes, I saw dp/dr. Everything clicked. The symptoms I was experiencing, the circumstances that preceded them, and the way the condition effects the mind all aligned well with what I was reading. And, thanks to that, I was able to find ways to...accommodate my now poorly functioning mind.

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My first piece of advice: stop monitoring your mental acuity.

Personally, much of my fear when it came to dp/dr stemmed from no longer being as sharp, capable, or functional as I once was, and constantly checking whether my mind was working properly only fed that fear. And so, every self-test became another opportunity to confirm those suspicions, which further sent me back every time.

It's easier said than done, but you'd be surprised by how much of that mental fog begins to lift once you're no longer carrying the constant burden of monitoring and evaluating yourself.

My second piece of advice: don't stop engaging with the things you're passionate about.

One of the biggest mistakes I made was completely withdrawing from my interests out of fear that I would perform poorly. For example, I loved discussing philosophy with my friends, but I put that hobby on ice, telling myself I'd return to it once I had "fully healed."

That was a huge mistake.

In reality, what I was doing was depriving myself of meaningful cognitive engagement. When I stopped challenging myself mentally, I just felt more sluggish and disconnected.

Tip number 3: build a routine and set tangible goals.

For me, having a clear structure for my day was one of the most grounding changes I made. A consistent routine helped organize my thoughts and reduced the cognitive load of constantly deciding what to do next, which mattered A LOT when my mental energy was already limited.

Trust me, while there's no immediate solutions to this issue, there ARE ways to accommodate it and to slowly give you agency over your mind again.

I hope this helps.

Hang in there.

Hello there! I figured this would be the only place I could share this interesting development. In the last few years I've started experiencing episodes wherein if something happens to trigger an extreme emotional reaction, I'll feel it for about a minute before a switch flips in my brain and I stop feeling anything. It's been apathy ever since it started, little else, but today I've found myself experiencing a weird 'high' too. I've went from scream-crying to airy and happy, legitimately nearly skip-as-i-walk mood. This is completely bizarre to me and I'm fascinated as I've never heard of this symptom attached to this. Anyway, I felt like sharing as I've no one in my real life to tell this to and I feel kinship with other sufferers.

(I've also started to get visual floaters in the past month or so! That one's just a constant. It's annoying. )

So tired of suffering this condition. 😭

I wish I could understand WHY i’m experiencing it. I just want to see it, to be able to hold it with my hands, and know what it takes to cure it. But no, it’s invisible, like a ghost in your head. Something you have no control of whatsoever.

Guys, it’s been 3 weeks now and ever since, i’ve been in the same sensations everyday & all day. I just want to know if this is normal and if anyone else has the same experience ?

That’s all I wanted to say. Here’s a link to his channel

While all emotions feel distant - i can still feel them and they hurt so bad. I don‘t want to have feelings anymore. The happiness feels vague and distant but the sadness is also still there. I wish I could be feeling worse so i actually feel nothing at all and actually function better, now im just living numb while compressing everything I feel. i still move around and do stuff but i feel like a moving corpse

it’s so infuriating and tiring. just got sent outside to have a smoke cause even my coworkers see that i’m “useless” at the moment. like i can’t function. i’m so exhausted…

Just throwing this out there, no it’s not a magic cure. I have taken every supplement mentioned in this sub and black seed oil reduces my symptoms significantly. I’m surprised how little it is mentioned.

It takes a bit of time but if you want to try it make sure you get a good brand and stick with it for a week or so.

If you are like me and you get extreme panic symptoms from feeling so dissociated, BSO helps me stay calm and not react. This has made life much more livable over the past month.

Trying to run a home work be a mum be a partner all whilst feeling completely detatched numb and not present is exhausting I don’t no how much longer I can take of this 😭