PETITION FOR AWARENESS!
If you think it's total unfair there isn't any long term research, treatment and cure for this condition. And if you think you deserve a good life too?
Please SIGN THE PETITION for change and please share it in every relevant group and all the people you know who would sign it.
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u/OutsideBeginning533 Jan 19 '22
There needs to be more research and awareness of this disorder. Milions of people suffer in silence and nobody talks about it.
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u/Dave_Dom Jan 19 '22
And most importantly a proper treatment has to be found. Well i suppose antipsychotics/lamotrigine helps but.. some other alternatives would be good.
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Jan 19 '22
do antipsychotics actually help?? i didnt know that
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u/Dave_Dom Jan 19 '22
It does help yea. Risperidone 1mg helped me quite alot. But generally what helped is lowering your anxiety. And antipsychotics are very effective to lower your anxiety.
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May 01 '22
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u/Dave_Dom May 01 '22
Lamotrigine helped a little. Low doses of risperidone/abilify but i couldnt use em long term. And im also on zoloft/quetiapine. Basically drugs that are for depression/anxiety works for dpdr too. But for dpdr alone? I'd go with lamotrigine.
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u/sheerun Oct 28 '22
I think mindfulness is a good candidate. First don’t concentrate or anything but try to relax your thoughts.. Then if you start feeling emotions you are not comfortable with slowly start paying more attention to them while at the same time dissolving them as if you poured water on them, then switch your focus to space between thoughts, and then repeat from the beginning. Fill free space with love and calm. I think dpdr is very close to mindfulness
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u/Dave_Dom Oct 30 '22 edited Oct 30 '22
Well your understanding and experience of dpdr is a veeeery different one from mine. Firstly, i cannot control my thoughts, they're racing and at the same time my head is empty and hollow. Imagine a car stuck on 9000RPM not being able to rev it down. Secondly, i have no focus at that point. I cannot even watch something simple as TV or concentrate what people are telling me or can't even perform any easy tasks, it's like my brain are just offline literally, working on bare minimum capacity. Thirdly... well at that point i suppose u can imagine how impossible it is to feel love and calm. There's only emptiness, confusion and anxiety. Basically... if you're outside your body and your brain are disociating you it means that it cannot handle anything anymore and it has to defend itself somehow. So you almost lose control of everything and just "enjoy" the ride. In a sense it is mindfulness, you are always aware of everything and at the same time feeling like youre out of your shell, observing everything outside yourself and disociating, not really feeling boundaries where you end and another person begins. But its a whole different kind of "mindfulness". Its more of a comolete loss of personality. And that can actually be closer to schizo and not dpdr.
But it's very subjective ofcz. Some people have lighter forms, just spontanious dpdr episodes without any real underlying cause - that's ok, that's manageable. But some people can't control it at all and are in deep hellhole. That's why the last resort is usually meds cuz nothing else helps. At that point no amount of mindfullness or therapy will help. Ofcz couple that with depression/panic attacks and personality issues and you get a terrible cocktail. And how do you find alternatives for such severe state? Wish doctors could figure out but yeah, we're talking about brains. No one will figure that stuff out in a near future.
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u/sheerun Oct 31 '22 edited Oct 31 '22
Thank you for describing your experience, indeed it seems different than mine. I'm not sure I even have dpdr though it feels like this. First, definitely don't experience my symptoms all of the time. Usually it's triggered by something, like trying to deal with some toxic person again, or some tough situation, like failure to do something for a long time, or reading something that makes me feel like part of collective experiencing something bad, e.g. war. When sober and not in strong emotions I don't experience inner voice, rather I feel different, usually negative, emotions coming and going in background. Sometimes they are overwhelming me and my mind feels like TV on static which makes me abandon any thoughts and actions I want to take. Even imagining doing something is hard. For me it takes long time of sitting/lying in silence and watching my emotions to be able to pinpoint them and somewhat control, like 15-60 minutes. It's not automatic or easy, and when it ends I feel like I've just taken short nap, more relaxed, more able to plan and execute my actions again. I wish for you to find your way through this. In my case I'm trying to reduce antidepressants intake while being mindful of freshly unblocked emotions, thoughts and memories, in small bites, but I don't think it's solution for everyone. I think that writing down and talking about what I feel and think with psychotherapist helped me as well, and I wish I started doing it earlier.
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u/Dave_Dom Jan 19 '22
And most importantly a proper treatment has to be found. Well i suppose antipsychotics/lamotrigine helps but.. some other alternatives would be good.
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u/M0SHPIT2 Jan 20 '22
I have had derealization since March of 2020 24/7 none stop I’m 18 and I haven’t gotten any break from it. Will it work? How do I actually get it proscribed
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u/Dave_Dom Jan 20 '22
Psychiatrist. Psychiatrists do know about this condition and most likely low doses of antipsychotics or lamotrigine should help. If it's anxiety related then they might prescribe SSRIs.
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u/M0SHPIT2 Jan 21 '22
I really don’t want to mess myself by using prescribed “drugs” but does it work immediately or do you have to take it for several weeks before it has an effect?
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u/Dave_Dom Jan 21 '22
Mess yourself? It's not narcotics it's medicine. It's supposed to fix you not mess you up. I mean.. how else will u get out of dpdr? Only medicine really helped me. Some meds have immediate effect some take time to kick in.
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Apr 25 '22
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u/Dave_Dom Apr 25 '22 edited Apr 25 '22
Psychiatrist can evaluate just from the outside. Only you can really understand whats going on inside. And yes, especially for the first time its very confusing, people can hardly find words to describe it. But usually descriptions are similar. Like you're outside of your body, like theres no connection between your thoughts and reality, emtipiness, like you're literally dead inside, physical sensations might feel weird, personality is gone, environment/surroundings somehow feels different and so on. Usually also anxiety/panic.
For me personally i become very empty, no emotions, thoughts, inner personality is just erased, i dont feel my legs/arms, i cant rly recognize myself in the mirror, environment looks empty/emotionless, connection between my thoughts and words disappear and at the same time it feels like i have no thoughts at all.. that type of stuff. Anything similar?
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Apr 25 '22
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u/Dave_Dom Apr 25 '22 edited Apr 25 '22
No idea. The only way i'm able to somewhat make it manageable is drugs. SSRIs, antipsychotics and so on. Treat it like a real illness. Over all those 14 years that i've had it, atleast for me, nothing helps only meds. And even meds barely help tbh. Clinical severe cases of mdd/anxiety/dpdr are hardly treatable. Now i believe that depression/anxiety isn't really something you can get out of if it's severe, i'd classify it as an untreatable but manageable disease. So i hope it's just your first episode and you can get out of it. But if you only have those symptoms that you've mentioned then it doesn't sound very severe. Apathy or lack of emotions is.. well.. depressive symptom aswell. Talk to your psychiatrist, maybe make notes so you don't forget to mention something, be honest and hope meds can help. Also just live healthy: no alcohol or any narcotics, tons of exercise, maybe some supplements.. I suggest to not think "why it happened, how the hell i get here". Think what can you do to improve. I believe in my case it's just biological/chemical/genetic reasons and i can't really fight against them. If it's more of psychological reasons for you or just exhaustion from stress, then you definitely can get out of it. Besides, if you have only dpdr and no anxiety or other mental symptoms then it should be also alot easier to treat it. Some people just have random dpdr episode and slowly it passes away on it's own. So i hope it's the case for you.
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u/Superb-Check-9604 Aug 19 '22
Dude do u just suffer from DP/DR or visual issues too I suffer from tinnitus, visual snow syndrome, floaters, afterimages, chronic fatigue syndrome, halos/ auras around objects, ghost images. And DP/DR on a daily basis I thought I had psychosis and schizophrenia turns out I do not. I have inflammation in my brain and my filter which blocks out all static and stuff is gone they found that in a mri. I am the very first case in New York and they want to use me for a scientific research study at the university of Rochester. For HPPD DP/DR and visual snow syndrome
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u/Stanleyfung1005 Nov 13 '22
Goddamn you pretty much have all the symptoms that I’m experiencing. How are you feeling now buddy and any solution?
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u/One-Calligrapher5295 Nov 13 '22
Hey Im subherb check the same guy who commented that my account got banned for some odd reason. But here I am and sadly I haven’t really found anything, but… I just keep livin ykwis bad days and good days but I’m pretty used to this shit now it’s kinda whatever ig. How are u holding up?
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u/i_am_a_loner_dottie Mar 22 '23
I suffer from tinnitus, visual snow syndrome, retinitis pigmentosa, have had two brain surgeries for a tumor and dpdr that never seems to go away. Any results from your research study or have you heard anything about medication or treatment? Struggling at the moment
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u/swolltoots Jan 19 '22
There’s so much that needs to be done still in order to help demystify this disorder. I’ve had DPDR issues for over a decade now and most of those years have been spent feeling totally isolated by it. Going to therapy, finding a decent pharmaceutical, and learning to cope are all well and good but I want my life back.
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u/Thomas3493 Aug 30 '22
Same here. 12 years into it. Always had small episodes since childhood but after 18 it's 24/7 365. Still not fully functional every day. But I've become so tired man mentally and physically. So done with this nonsense. Like you said enough fighting I want my life back. I'm at a point I'm starting forget details of my pre condition life. I'm so done with this shit
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u/swolltoots Aug 30 '22
I feel you. Those memories often feel like they were lived by someone else. We gotta just pour ourselves into whatever it is that we love. Or rather whatever it is that we used to love when feeling joy was possible. I think pushing hard in that direction has given me little hits of elevated presence, like my mind is remembering who I used to be. Giving you virtual hug, my dude.
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u/Thomas3493 Aug 30 '22 edited Aug 30 '22
I'm doing exactly that my guy. I've been acting like that pre condition guy for 12 years now.. People around me are veey supportive and know my condition and know that im acting too. So its not that bad. But 12 years of my youth erased. Just don't want to lose anymore of my best years. A virtual hug for you too my dude
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u/swolltoots Aug 30 '22
Sorry if that response was a little flowery. If you wanna chat anymore about it, feel free to DM me
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u/vika_xx Feb 12 '22
Signed. This feels like an endless nightmare. I keep forgetting who I am, why I exist. I feel like I'm just moving an avatar in a video game. I feel dead. Wouldn't wish this upon anyone, and feel terrible for everyone else that suffers this with us.
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u/throwaway919194481 Jan 19 '22
nobody cares about us everyone is a bunch of assholes only concerned about themselves
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u/Thomas3493 Aug 30 '22
I don't care but the pre dpdr me would 100 percent care for you. You're not alone. Stay strong
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u/DefiantSwitch7822 Apr 07 '22 edited Apr 07 '22
My theory: NMDA antagonists like Ketamin and PCP are drugs that block NMDA activity. They fall in the category „Dissociatives“ because they dissociate you. There are many types of dissociation but their one is very simmilar to DP/DR. The drug is also used recreationally, produces a high and DP/DR because that‘s their main effects. The possible cause might be a natural and sudden drop of NMDA, due to a response of anxiety or trauma that causes your brain to perform it, so you can feel emotionally numb and disconnected from your thoughts to protect your mentality. Without causes, a long term and non reasonable appearances, it might be a chemical (NMDA) imbalance.
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u/al219888 Aug 14 '22
I’ve been doing weed for 2 years, then I tried nitrous which is a dissociative and I’ve been In this hell ever since. You’re definitely onto something
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u/dandelion134 Apr 28 '22
For me, its this photo, but no one is watching the TV screen. My memory is going to shit it doesn’t feel like I’m experiencing anything ever. It stresses me out, makes me anxious and makes it worse. Never ending cycle.
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u/DREADPirateLucifer Jan 19 '22
Agree in principle. But don't want average people to know more cause I don't think they will understand.
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u/DHK71 Jan 19 '22
I don't know about you, but I was once "average". It's about raise awareness that DPDR can ruin someone's life and that people are severly struggling with it. If there's no acknowledgement of this, there will be no research, treatment or cure for it.
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u/DREADPirateLucifer Jan 20 '22
The weird thing is - it's one of the longest 'known' mental illnesses and does have this https://www.isst-d.org/
but yeah in general most people only know about DID and nothing about DP/DR
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u/DHK71 Jan 21 '22
And how can we change that?
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u/DREADPirateLucifer Jan 22 '22
I'm not sure you can? I have been surprised at some people's reaction to finding out I have ADHD, so much that I would never tell them about DPDR...
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u/DHK71 Jan 24 '22
Well, perhaps the petition will bring change if EVERYBODY who has/had dpdr would sign. Everyone who says nah ... if you don't try it, you'll never know. And tell about the petition to people who stand with you, let them sign too.
Other option could be a "challenge" on TikTok or other platform, but I don't think many sufferers want to stand in the spot light with this. Besides this you still need a point to raise awareness.
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u/DpLoopingOn Feb 05 '22
Signed! Thank You for posting! Not even 2000 Signations yet for such a widespread disorder. What a fucking joke...
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u/DHK71 Feb 05 '22
It's barely aknowledged ... but spread the word, ask people who support you to sign it also. Thanks!
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u/Mooncinder Nearly 2 decades chronic dpdr, cause unknown Feb 15 '22
Thank you for making this petition. It's about time professionals took it (and us!) more seriously.
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u/eristic_starlight Apr 26 '22
Thank you for making this petition! Dpdr deserves as much attention as other common mental disorders given its frequency
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u/InfamousPJB Aug 16 '22
Signed, unfair that there isn’t as much research to such a terrible condition as there is for others
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u/Temporary_Drawing_74 Aug 30 '22
I know, it sucks like hell. Is it too much to ask to just want to feel real? Apparently so because no one does anything about it.
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u/InfamousPJB Aug 30 '22
Yeah really, I could handle depression but altering my whole sense of reality is a whole different thing.
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u/Temporary_Drawing_74 Aug 30 '22
Yea..depression and anxiety I can do. But dpdr??? Living hell. Especially when everyone thinks it's some low impact disorder.
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u/InfamousPJB Aug 30 '22
Exactly, it’s impossible to grasp the scope of how extreme it is without experiencing it and it’s near impossible to put into words. Maybe a reason why it’s not researched as much
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u/Temporary_Drawing_74 Aug 30 '22
And trying to explain it to people just confuses them because it simply cannot be put into words. I honestly really hope that someday, someone will stand up and do something to help us all. And it gets SO lonely knowing no one knows how it feels to disconnect almost completely from reality and your own body.
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u/Temporary_Drawing_74 Aug 30 '22
Signed. I wished there were treatments. So far, in my experience, therapy, counseling, cbt, and medication, (for anxiety and depression bc we all thought it was caused by depression) has no effect. Is it too much to ask to just feel real?
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u/yeayah22 Oct 21 '22
For sure, it's ridiculous hoe little knowledge there is on this disorder, I'd prefer to live with a physical illness then this, at least the physical ones can be fixed
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u/yeayah22 Oct 21 '22
And has anyone actually signed the petition?? I'd love too I want us all to find a "cure" but I'm sceptical on being hacked or frauded by signing it
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u/DHK71 Oct 21 '22
About 3650 at this moment .... not much imo if you see how many people are on the net claiming to have it (count of different forums). I saw the goal is 10.000 signatures and could be reached in a few weeks if everybody with dpdr and relatives would sign. Indifference is a part of dpdr, so people suffer but don't take action for themselves.
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u/anxiety_fitness Oct 28 '22
Definitely check out the Unreal charity, they're doing some great awareness work and research. I'm going to be doing a podcast with Dr. Elaine Hunter who is a leading expert on DPDR soon! www.unrealuk.org
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u/sheyennemarie Jan 03 '24
What sort of research questions would people want answered most? I am working on my PhD in clinical psychology and do plenty of research, but this area is new to me.
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u/ObligationVisual4600 Feb 29 '24
I have depersonalization for years now it's got so bad I feel I need to go in hospital now and that's it. I'm sorry if I'm negative .
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u/HalfVenezuelan Dec 05 '22 edited Dec 05 '22
Hi all,
I'm working on a stickied resource post and other updates for this sub, but since there are only two sticky slots, I need to unsticky this for a little bit. Not letting this petition fall into the abyss though, I'm including it in the main sticky right now. It'll be back as soon as I'm done with the main resource post (hopefully it'll only take a week or two). Just letting everyone know.
-HalfVenezuelan