Having this disorder for 10 years was worse than my best friend killing himself.
I relate very much. Now I am doing better, but in general I would make a similar comparison. I lost my best friend in a car accident, I cried for a month, I took a year to recover and still it wasn't as bad as my DPDR. And I hate it that so few people understand. A (ex)friend of mine, who even studied psychology, told me bluntly that I don't have anything, I just read the symptoms somewhere online and thought I had it.
I agree with this. I have practiced meditation for several years, including near month long retreats, originally in an attempt to feel less derealization, and what it brought me did not feel like an antidote to derealization. I felt more present, I had a clearer vision of what was happening in my mind or around me, but I was still detached from things. I don't think it helped my DR at all. To me these are two separate things. But I have read that some people could reduce stress thank to meditation and did experience less DP/DR.
I like to come here, and I like reading people's recovery stories, they can be interesting or inspiring sometimes. But when a recover story turns into "this is what you should do", or "if you didn't recover yet it is because of this or that frame of mind" then it turns into something toxic in my opinion. I really love to read a story where someone shares what has helped them, then I am free to apply what they say or not, I am free to decide if it applies to me. But like Eddy I am a bit upset when someone tells me what I should do, when they pretend that their own experiences give them the power to tell me what is wrong with my life without having ever met me. People's stories are so vastly different. What makes people recover is also very different apparently. If there are actual statistics saying that this or that works for 90% of the people, it is fine to give the numbers and the sources, and people are free to experiment and decide if they are in the 90% or in the 10%. But I don't like it when someone decides for me. Any recovery story, no matter how useful it can be to others, is as efficient if it is framed as "this is what I had, this is what i did, and this is what happened for me". People are smart enough to emulate it if they can and want. Being told what to do does not make the story any more powerful or useful.
Interestingly this mentality seems to be very frequent around DP/DR, here or on youtube for example. I don't think you see that as much for depression, anxiety or for schizophrenia. At least that is my experience on virtual support groups. There, people tend to support each other with compassion, they understand people's struggles and respect each person's uniqueness. They talk about their own experience, fully accepting that it will not necessarily apply to others, no matter how enthusiastic they are about it. You don't find as much people going around and telling people "I did that and it worked, I found the cure, so you should do the same, and you won't get better until you do as I say". It seems that there really is something specific with DP/DR. Again, that being said, I like to come here and read peole's story and I will keep doing so because it often helps me.
antidepressants work for anxiety because it numbs your emotions. no emotions = no anxiety.
but still its very interesting that you claim zoloft removed your DR.
Sorry but again I think this is a misconception. Or it depends on the antidepressant, on people, and on the dose. My sister has been on an SSRI for months and her emotions are not numbed out at all, she just feels happier and with more energy. I also had the same feeling with Saint John's Wort, which works as an ssri. I do know that numbing of emotions happens to some people, but I wouldn't say this is how the substance works necessarily.
Yes, I have questions. For how long have you been having DPD, and do you consider yourself recovered? If not, at what percentage do you consider yourself compared to where you were initially?
I have meditated for several years now, including long retreats (not extreme ones though), and it has always made me more present to my surroundings but not really in a way that helped with my dpd. I was more aware but still as detached as before, except for some very brief flashes where DPD was reduced a little, just for a fraction of a second and than it was back 100%.
I get where you are coming from, but if you have primary DPD then you do not overlap with schizophrenia. This isn't an opinion, rather this is well established taxonomically in the clinical literature. The medical sciences are not perfect (no academic discipline is), however mental health has been a topic of clinical analysis for centuries, and there are old folks in their labs and offices researching, reading, writing, testing and debating clinical phenomena. If you do a bit of reading into it, you will find a long history of literature about DPD that started in the late 1800s. These "old folks" are professionals who have made a clear distinction between schizophrenia and DPD in terms of formal classification but also the implicated brain structures as a result of investigation and debate that took more than a hundred years long. They emphasise that there are many differences, but a key differentiator between the two disorders is reality-testing, that of which is impaired in schizophrenia but functional in the DPD.
Now, this isn't to say that you cannot develop schizophrenia just because you have primary DPD, because I agree with you in that you potentially could just like anybody else including currently healthy people. But it is very likely that you will not. This is clear from the epidemiological research. Your chances are the same as a healthy person, and thats the point. Just like with anything in life that becomes subject to analysis there are always outliers, there always exist abnormalities and cases that don't lay on the trend-line, but it is very unlikely that if you have primary DPD that you will develop schizophrenia. "But what if I am that outlier" --> this is anxiety. Just because we think something in our mind and worry about it, it doesn't necessarily become true. If we suspect psychotic symptoms then we should refer to a psychiatrist who can help diagnose us. If the clinician says theres no problem, and the people around you do not suspect anything odd about you, then you do not have a problem. You may think you do and worry about it, but thats not necessarily reality.
Yes, if you have schizophrenia or a psychotic disorder you may present with symptoms of DPD, but this is not a "schizophrenia-thing". People with depression, anxiety, bipolar, even OCD can have secondary symptoms of depersonalization, same goes for schizophrenia. I don't think anyone is arguing that DPDR is a protection against psychosis, rather that if you are worrying about developing psychosis, then you should acknowledge that you are worried. Worrying about something and actually experiencing something is two separate things.
It is dangerous to assume that everyone on this forum has primary DPD, this diagnosis is very hard to claim. For this reason, it is very important to get an accurate diagnosis from a mental health professional. You should never self-diagnose yourself with any condition, we are not capable of doing so on our own, we need the assessment of someone from the outside. This is especially the case if you have a psychosis-spectrum disorder.
How so? I do not see any overlap, and the clinicians don't either.
I just meant that it is not possible to say to someone "no you are just anxious, you have DPD but you don't have schizophrenia". Even if the probability was very low. Just as you cannot tell someone "no your airplane is not going to crash, especially if you have anxiety and worry about it", this makes little sense to me. Airplanes do crash (and even to treat anxiety I don't think therapists make people believe airplane crashes never happen, rather they talk about accepting uncertainty). Anyway, I do have DPD and at times I have been very anxious of having schizophrenia, nevertheless I did get a kind of diagnosis of schizo-affective disorder from a psychiatrist after I heard voices when on zoloft, a person who had worked with psychotics told me I look like a schizophrenic who hasn't decompensated yet, another psychotherapist immediately questioned me for positive symptoms of schizophrenia when I described my symptoms of DPD. These were people with professional experience.
Of course you need more information about the person to know if they can have schizophrenia, but so do you if you want to tell them they don't have schizophrenia. Just like it doesn't make sense to say that airplanes don't crash, I think it doesn't make sense to say that people surely don't have schizophrenia, especially when the only thing we know about them is just that they have anxiety. Sure you can tell them that because they feel all the weird symptoms of DPD doesn't mean they have schizophrenia, and that a lot of people worry about having it, and actually don't have it. But it is not possible to make a diagnosis for someone over the internet after a few posts about anxiety, this is what I believe. And even if DPD alone, and DPD with schizophrenia are clearly separated, this still doesn't solve the problem of finding out in which category one is.
I am sure it will help a lot of people, I just mean there is a difference between saying "I have recovered, here is what I did" and "I have recovered, now I understand everything about every person who has dpdr, if you think X or Y then you are wrong, and here is what you have to do". I don't think recovering gives people insights about the problem of others. Sorry, I get a bit upset about this. Technically I believe there is a good chance my problem is related to anxiety and rumination. I am not really talking about that, just the form. Like in "dp/dr is NOT, I repeat, NOT a disorder by itself!!! I dont care if a phychologist says it is". Maybe it is true, but recovering doesn't give people degrees to be superior to a psychologist. Like this I feel I am being talked down to. Giving ones opinion just as an opinion or a personal experience is already enough.
This is interesting. It reminds me of something I have heard in meditation classes. They were explaining that new research had found that "the brain could rewire itself", implying that this meant we were not stuck with the same brain for life but that we could somehow improve it. But without rewiring, we know already that our minds evolve, the simplest example is that we can learn new things, new ways of being, and we knew we could do this long before we knew the brain could rewire itself. Whether it is done through "rewiring" or through reinforcing different paths maybe doesn't matter so much.
The other thing is that when we hear about neurogenesis, we tend to imagine improved abilities. But more neural paths doesn't necessarily mean a better brain. During adolescence we go through that "pruning" stage, where lots of connections are destroyed so as to be more efficient, which seems to mean that less connections is sometimes preferable. Plus, I have never heard of the direct consequences of neurogenesis. Could it cause something bad like hppd? Or increase negative thoughts or something like that. I think dpdr is something very specific, and I suppose it it far fetched to imagine that we could solve it just by increasing the general number of connections. For all we know, dpdr might be caused by a too high number of connections somewhere. Or am I missing something?
I told my psychiatrist about different studies, and he agreed to give me different things, including naltrexone.
I had told him about that study where they gave low doses of naltrexone to people experiencing trauma related dissociation symptoms. 11 out of 15 felt some improvement. The objective of the low dose (2 to 6 mg /day) was that they can still dissociate if they need to as a protection in case of trauma induced stress. They give descriptions of recovery that felt promising, so I wanted to try the low dose like them before moving to higher dosage.
My prescription is 25 mg/day, because there is no lower dosage on the market, so I cut it in pieces of 6 mg by myself. I took the first one this morning and it did reduce my derealization. The world was more vivid, but I still felt kind of detached from it, it was not full 3D, but I still got more connection to the atmosphere of the place, and had a walk outside just to enjoy the effect. I would say I had -20 to -25% of derealization symptoms. But it is hard to estimate because I might have forgotten a bit what reality feels like after the years, so I might underestimate how far I am from reality, and overestimate the improvement. And I am still full of mental BS default mode chatter.
Also I was surprised by how fast the pill was acting. I felt the very first effects after literally less than 5 minutes.
Cool! I didn't know it had a name. So I had micropsia a few times. It wasn't too unpleasant or frightening, but it was weird. I was lying in bed and the ceiling looked like it was so close it was touching my face. It felt like being in a coffin. And it lasted just few seconds.
I have had tremendous and rapid improvement with Sertraline.
Unfortunately I also had very strong side effects including some beginning of hallucination, like misattributing some sounds for voices, although I was perfectly able to doubt the hallucination. And all sounds and atmospheres started to have a kind of psychotic touch to them. This was all in 4 days of treatment only. I believe I am very sensitive to SSRIs, and according to my current psychiatrist my reaction is probably due to another pathology, maybe schizoaffective dissorder. So he will probably not let me try any other SSRI and I am quite pissed about it.
By the way, I am not sure my DPDR is drug induced. When it started it was very gradual and concomitant with smoking weed occasionally for the first time, experiencing some trauma, and being a teenager (brain development, age of onset of various pathologies...).
Thank you very much for taking the time to put links to the different studies.
I have been having derealization for 20 years now, and some depersonalization mostly in the first 10 years and it tended to fade away.
What is puzzling me is that the vast majority of people say that their symptoms are correlated with anxiety or terrible panic attacks, and it doesn't seem to be the case for me. I do have a tendency to be anxious, and at times I have had really bad anxiety, like a few years ago when it was so bad that my immune system shut down, my digestion stopped completely for 2 days, I felt cold non-stop or some times I was so anxious that I thought I could not survive this. And at other times I felt no anxiety at all, everything was manageable, I felt very ok. And in both these kind of circumstances my derealization was absolutely constant. Anxiety did not make it worse, and absence of anxiety did not make it better.
But some things have helped me recently. I have been on Sertraline (SSRI) for 4 days, and I felt like my derealization was almost completely gone. I had to stop because of too strong side effects though, and some mild auditory hallucinations. And so the derealization came back. I am now on a low dose of Risperidone and Lithium, and the derealization is just slightly lower than normal, but barely noticeable difference.
I realized I have a kind of obsessive way of thinking, where every thought I have comes as a form of imaginary conversation with someone. Every thought I have, all the time. I realized this was a kind of way to imagine having acknowledgment (or recognition is the right word?), and one day I tried to take each thought that I was having and just put it back in context of this need of acknowledgment, that this was all imaginary, that the real meaning of the thought is a need of acknowledgment. As I did this, I felt a very strong rush of "re-realization", like a flash. I have never had this before in all this time. But then it was gone and impossible to make it happen again. I had another rush like this in another similar circumstance but it is maybe a story for another time.
I am kind of annoyed that I don't have obvious anxiety reasons to focus on to get rid of the DR. I was wondering if anybody had something similar (no correlation with anxiety) and I would be interested to know if you too have some kind of obsessive thinking patterns, and what helped you.