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Hey leminaseri,

Would you perhaps like to share as to why this particular video killed your hope?

I am suffering from depersonalization-derealization disorder, and I am diagnosed with it, as a disorder on the spectrum of dissociative disorders. I haven't got it from drugs or (for most part) anxiety, but from a prolonged childhood abuse that I suffered, and in my case it is completely trauma-related. It means that I cannot just solve it by relieving my anxiety, even though relieving my anxiety helps, but that I have some other background issues to tackle. It does not mean that I am doomed with this disorder, it just means that my path to recovery is somewhat more complicated - but not impossible!

I have to say that I see nothing wrong with what this guy is saying. He allows for other possible causes of depersonalization to exist, but he is pointing out to what he suffers from, and that is what he is mostly talking about through his channel, from what I understood, based on this one video. It does not have to refer to you. Also, you should only rely on a good therapist to tell you what you suffer from, and by no means assume on your own what kind of DP do you have.

Best,

A.
 

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I agree totally with what Anna said. If your DP is transient and intermittent, then it is likely it is triggered by anxiety or depression. So tackling the underlying cause there would likely solve the symptom of DP/DR

Depersonalization Disorder (DPD) is a chronic and unabating illness, where the symptoms of DP, DR or both, are always there regardless of anxiety or depression. The disorder, as Anna said, is often a result of trauma (I believe) so tackling the trauma might relieve the symptoms in those cases.

All he is saying basically, is that often people making these videos don't distinguish or know the difference. Some videos talk about tackling the anxiety while others talk about the actual disorder (a lot like on this website). So for you the first step is to appreciate you either have symptoms of DP or DPD and then go from there. We are all in the same boat here though so try not to lose hope. Have faith you will find the answer you are looking for, but it may take some time
 

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The video is a year old. He later became a patient at the former "Depersonalization research unit" and was given 16.sessions of cognitive behavioral therapy. He was tested prior to the sessions and after. It was found that his symptoms had increased after CBT. He also tried the combination of lamotrigine and a SSRI without effect. Then naltrexone in a dose as high as 150.mg. He had to stop that as he became to have problems with he liver metabolizing the drug.
He was contacted by an English publisher who was interested in a book about depersonalization. He have recently submitted the manuscript to them. He is active in the depersonalization charity "Unreal" and had some interaction with former researchers at the then "Depersonalization research unit" and they have said to him that they do not have an idea what causes the disorder. So, there is more need for research.

The latest brain scans they did was in 2015. In many ways these are very old. There are scanners that are 50.times faster than those they used, there are also scanners that can go deeper into structures in the brain stem. Recent studies in the dissociative subtype of PTSD found that a structure related to fight and flight and immobilization was affected in dissociation called "periaqueductal gray". So, new scannings might give some new data about the disorder that could not be seen before. There are also changes in the possibilities of interventions with brain stimulation. When the "depersonalization research unit" did their small rTMS trail there was many location in the prefrontal cortex that could not be stimulated with a normal coil. That have and still is a problem in depression too. Many depressive states would not respond to normal rTMS as that state likely was cane from location to deep in the prefrontal cortex. There are now developed coils that can go deeper into the brain and stimulate areas that could not be stimulated a few years ago. So, there are more areas found active in depersonalization that was not accessible a few years ago that can be intervened in now. These techniques are used in a very few places on the private market in the US but for research it is more possible.

A research facility using a combination of new functional MRI scanners and rTMS could give more information about emotional regulation is done in depersonalization and a treatment. This is done in depression and have been very productive about the disorder. Most depressive can not use these location as most rTMS clinics only treat at locations found 20.years ago. They do not have the equipment to go into the other locations found yet. I think it will change the coming years.
 

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Symptoms increased after CBT??! Not surprised, doubt they will publish that research. I went there twice, once to see Dr Sierra who say me free of charge, diagnosed me officially and sent a letter of recommended medications to my GP ALL FOR FREE.

I then went back several years later to see Dr Elaine Hunter, who wanted to charge me several hundred pounds an hour for therapy (with no proven efficacy). I had already paid hundreds just for the initial referral. I saw a psychiatrist who clearly had no idea what DPD was. And Dr Elaine Hunter who spoke to me for 2 whole hours, then lost the notes she made so had to ring me a month later.

The place has changed for the worse IMO and seems less focused on research and more on profit.
 

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It is not a research unit anymore. It stopped in 2014-2015. I do not think Elaine Hunter have worked there for many years. I think she have a private practice where people have to pay. There should only be one psychologist employed there. If you have to get medicine it will be from a psychiatrist who are just employed at the Mausely hospital and only have a superficial idea of depersonalization. Prof. Anthony David who was the leader of the unit was a prof at King's College and have moved to a chair at University College London. I think Elaine Hunter also have some connections to University College London. If you have been seen after 2015 it might explain you had to pay. It was a private practice.

So, to call it a specialist clinic today is misleading. I think the reason he got worse is it might in increase self-monitorisation in some. CBT is many many ways highly overrated. It might work in some disorders. But, in most disorders it is very dependent that there are seen some reductions from a somatic interventions. So, in states like depression, general anxiety or OCD it can be a booster in remission if there are also seen some reduction in symptoms from a medical treatment. I think that in depersonalization some of the techniques might be helpful if you have seen/felt a reduction in symptoms like 40-50%. It might work as mono therapy in some if the outset is recent. So, we really need a somatic intervention with high response rate in a majority.
 

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hello, n, I saw you said you met Dr. Sierra .. I also want to meet and seek treatment with him .. where can I meet with Dr. Sierra .. please help
 

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Discussion Starter · #8 ·
Hey leminaseri,
Would you perhaps like to share as to why this particular video killed your hope?

I am suffering from depersonalization-derealization disorder, and I am diagnosed with it, as a disorder on the spectrum of dissociative disorders. I haven't got it from drugs or (for most part) anxiety, but from a prolonged childhood abuse that I suffered, and in my case it is completely trauma-related. It means that I cannot just solve it by relieving my anxiety, even though relieving my anxiety helps, but that I have some other background issues to tackle. It does not mean that I am doomed with this disorder, it just means that my path to recovery is somewhat more complicated - but not impossible!

I have to say that I see nothing wrong with what this guy is saying. He allows for other possible causes of depersonalization to exist, but he is pointing out to what he suffers from, and that is what he is mostly talking about through his channel, from what I understood, based on this one video. It does not have to refer to you. Also, you should only rely on a good therapist to tell you what you suffer from, and by no means assume on your own what kind of DP do you have.

Best,
A.
hey, thanks for your reply.

it had killed my hope because i always had believed i will recover like those people in the recovery videos. and i had asked me all time why my dp is so differently compared with 10 years ago, like „im not anxious but i have still dp" and this video had gave me the answer. this had killed my hope
 

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Discussion Starter · #9 ·
I agree totally with what Anna said. If your DP is transient and intermittent, then it is likely it is triggered by anxiety or depression. So tackling the underlying cause there would likely solve the symptom of DP/DR

Depersonalization Disorder (DPD) is a chronic and unabating illness, where the symptoms of DP, DR or both, are always there regardless of anxiety or depression. The disorder, as Anna said, is often a result of trauma (I believe) so tackling the trauma might relieve the symptoms in those cases.

All he is saying basically, is that often people making these videos don't distinguish or know the difference. Some videos talk about tackling the anxiety while others talk about the actual disorder (a lot like on this website). So for you the first step is to appreciate you either have symptoms of DP or DPD and then go from there. We are all in the same boat here though so try not to lose hope. Have faith you will find the answer you are looking for, but it may take some time
hey thank you for replying.

its very complex for me because, 9 months ago as my journey through the hell had began, first i had gotten very weird and light anxiety attacks, very high muscle tension. later depressive symptoms like insomnia, severe pressure on my ears, no motivation to do anything and so on. but i had thought „oh no this is the beginning of my schizophrenia" and i got panic attacks. because since 2011, when i had became derealized, depersonalized i was afraid of becoming schizophrenic. when i had gotten recovered i didnt thought anymore about that fear.

but now, after 9 months, my anxiety is almost passed away, i can do everything what i want like being social or go working. im not afraid of psychosis anymore. but im still depersonalized and derealized you know?
 

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Discussion Starter · #10 ·
The video is a year old. He later became a patient at the former "Depersonalization research unit" and was given 16.sessions of cognitive behavioral therapy. He was tested prior to the sessions and after. It was found that his symptoms had increased after CBT. He also tried the combination of lamotrigine and a SSRI without effect. Then naltrexone in a dose as high as 150.mg. He had to stop that as he became to have problems with he liver metabolizing the drug.
He was contacted by an English publisher who was interested in a book about depersonalization. He have recently submitted the manuscript to them. He is active in the depersonalization charity "Unreal" and had some interaction with former researchers at the then "Depersonalization research unit" and they have said to him that they do not have an idea what causes the disorder. So, there is more need for research.
The latest brain scans they did was in 2015. In many ways these are very old. There are scanners that are 50.times faster than those they used, there are also scanners that can go deeper into structures in the brain stem. Recent studies in the dissociative subtype of PTSD found that a structure related to fight and flight and immobilization was affected in dissociation called "periaqueductal gray". So, new scannings might give some new data about the disorder that could not be seen before. There are also changes in the possibilities of interventions with brain stimulation. When the "depersonalization research unit" did their small rTMS trail there was many location in the prefrontal cortex that could not be stimulated with a normal coil. That have and still is a problem in depression too. Many depressive states would not respond to normal rTMS as that state likely was cane from location to deep in the prefrontal cortex. There are now developed coils that can go deeper into the brain and stimulate areas that could not be stimulated a few years ago. So, there are more areas found active in depersonalization that was not accessible a few years ago that can be intervened in now. These techniques are used in a very few places on the private market in the US but for research it is more possible.

A research facility using a combination of new functional MRI scanners and rTMS could give more information about emotional regulation is done in depersonalization and a treatment. This is done in depression and have been very productive about the disorder. Most depressive can not use these location as most rTMS clinics only treat at locations found 20.years ago. They do not have the equipment to go into the other locations found yet. I think it will change the coming years.
thanks for the very valuable informations. i hope in the next 15-20 years there will be accurate methods to threat this mental state.
 

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Hey leminaseri,

Don't lose hope by identifying with other people having DP, because we are all different - that is something you can clearly see here, at this forum.

Sure, sometimes we wish that is does not have to be so damn difficult, particularly when we are already worn out by all the struggle, but it is what it is.

Keep focus on your own experience, on your strengths and your resources. Give yourself credit for all that you have been able to do by now, and don't give up.

Best,

A.
 

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Discussion Starter · #12 ·
Hey leminaseri,

Don't lose hope by identifying with other people having DP, because we are all different - that is something you can clearly see here, at this forum.

Sure, sometimes we wish that is does not have to be so damn difficult, particularly when we are already worn out by all the struggle, but it is what it is.

Keep focus on your own experience, on your strengths and your resources. Give yourself credit for all that you have been able to do by now, and don't give up.

Best,
A.
yes i understand.. thank you for your advices
 

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hello, n, I saw you said you met Dr. Sierra .. I also want to meet and seek treatment with him .. where can I meet with Dr. Sierra .. please help
You can not see Mauricio Sierra-Siegert. He have not been employed as researcher since 2015. You could only get a consultation then when it was under English "National Health Service" and if you lived in England. For English patients not living in the London area it could take years to get a referral. He now lives in Medellin, Columbia and do not work with depersonalization. There is no formal cure for depersonalization and he do not have it either.
 

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thanks for the very valuable informations. i hope in the next 15-20 years there will be accurate methods to threat this mental state.
I expect there could be a treatment within the coming years. There are some locations found active in depersonalization you have not been able to intervene in until recently. This is also the case for depression. The locations have been to deep in the prefrontal cortex to do it. But, there are coils that can go deeper and they will likely be available for the many with depression who do not respond to normal rTMS. Many of these locations found in depression are often very active in depersonalization too. So, when these coils that can go deeper are available then other locations can be tried. The medial prefrontal cortex along with anterior cingulate is found active in some states of depression and obsessive compulsive disorder. This area is also found active in depersonalization. It is very deep in the brain to reach but a deep coil can. There is a lot of obsessive self monitoring in depersonalization and it might be related to this activity.
 

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To mayer-gros My advice .. You submit yourself to the study because the cooperation of intelligent sufferers seems needed rather than passive sufferers
 

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To mayer-gros My advice .. You submit yourself to the study because the cooperation of intelligent sufferers seems needed rather than passive sufferers
Thanks.

I tried rTMS in march at the right VLPFC/ventrolateral prefrontal cortex and the right TPJ. 12.session and i felt nothing. The right ventrolateral prefrontal cortex was the area that the "Depersonalization research Unit" found to be an area for rTMS intervention though they expressed interest for some other location but likely dropped them as they where to deep for a rTMS intervention then(2014).You can not do rTMS at the right ventrolateral prefrontal cortex without neuronavigation from a MRI scan - that excludes almost 90% of all rTMS providers as they do not have neuronavigation . They would not be able to find a location. So, I have thought about why I did not respond and one reason could be I am left handed some much of my emotional regulation could be in the other brain hemisphere. Left handed are almost excluded from brain imaging studies or rTMS trail because they can cause errrors for the study. Other reason is that the location that they found might not be the right one. Other studies point towards the ventromedial prefrontal cortex - again a location too deep in the brain. I re-read a text by rTMS researcher, Jonathan Downar about different locations in the prefrontal cortex and he writes that ventrolateral prefrontal cortex have some surface that can be stimulated by a normal coil but it expands into the brain where a normal coil cannot go. To him it is a location for a coil for deep rTMS. When I looked at some of the images taken in the studies by the depersonalization research unit I could see that large parts of the ventrolateral prefrontal cortex active it likely to deep to be inhibited by a normal coil. So a reason for the lack of response could be the only 1/3 to 1/2 of the ventrolateral prefrontal cortex was stimulated. So, you likely need both neuronavigation and a coil for deep rTMS to give this area a fair trail. There are some who have benefited partly at this location but if it is only 50% a normal coil can cover of the location it might explain that.
 

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This brain image is from a study done by the "depersonalization research unit" done in 2015 In patients with depersonalization . The first picture A shows overactivity in the center of the brain and that is the medial prefrontal cortex. To the right is the overactivity of the right ventrolateral prefrontal cortex. Parts of it is likely too deep for a normal coil to affect. Picture B show overactivity in the anterior cingulate and it is also deep into the brain. You can with a deep coil stimulate both the medial prefrontal cortex and anterior cingulate in one session at once with a deep coil. It is done in obsessive compulsive disorder.

https://www.frontiersin.org/files/Articles/173530/fpsyg-07-00432-HTML-r2/image_m/fpsyg-07-00432-g002.jpg
 

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Thanks.

I tried rTMS in march at the right VLPFC/ventrolateral prefrontal cortex and the right TPJ. 12.session and i felt nothing. The right ventrolateral prefrontal cortex was the area that the "Depersonalization research Unit" found to be an area for rTMS intervention though they expressed interest for some other location but likely dropped them as they where to deep for a rTMS intervention then(2014).You can not do rTMS at the right ventrolateral prefrontal cortex without neuronavigation from a MRI scan - that excludes almost 90% of all rTMS providers as they do not have neuronavigation . They would not be able to find a location. So, I have thought about why I did not respond and one reason could be I am left handed some much of my emotional regulation could be in the other brain hemisphere. Left handed are almost excluded from brain imaging studies or rTMS trail because they can cause errrors for the study. Other reason is that the location that they found might not be the right one. Other studies point towards the ventromedial prefrontal cortex - again a location too deep in the brain. I re-read a text by rTMS researcher, Jonathan Downar about different locations in the prefrontal cortex and he writes that ventrolateral prefrontal cortex have some surface that can be stimulated by a normal coil but it expands into the brain where a normal coil cannot go. To him it is a location for a coil for deep rTMS. When I looked at some of the images taken in the studies by the depersonalization research unit I could see that large parts of the ventrolateral prefrontal cortex active it likely to deep to be inhibited by a normal coil. So a reason for the lack of response could be the only 1/3 to 1/2 of the ventrolateral prefrontal cortex was stimulated. So, you likely need both neuronavigation and a coil for deep rTMS to give this area a fair trail. There are some who have benefited partly at this location but if it is only 50% a normal coil can cover of the location it might explain that.
interesting. I'm left handed in some cases as well but right handed in others. I wonder if this would change anything For me in terms of TMS locations.
 

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In most cases no. You have be very left handed and it is not likely that the prefrontal cortex is affected as it is more related to emotional regulation and not bodily movements that is more on the side of the head. But, you really can not give an exact answer as it is understudied. They simply just exclude left handed in trails to avoid errors that might potentially be there or not. I think the reason I did not respond is two 1) only 1/3-1/2 of the ventrolateral prefrontal cortex was stimulated due to the coil used and partly the type of neuronavigation used. Advanced neuronavigation monitor the coil position all the time and if it not on the exact area of the brain it will stop rTMS. The navigation was done separately and marked with a pen from a MRI scan of my brain in a neuronavigation system used to brain surgery , 2) the locations might not be right and the disorder might need different location for interventions from patients to patients. We see that in depression and rTMS. There are some areas in depersonalization active that have never been tried because they are to deep for the type of rTMS they had then, -could not go deeper into the brain than 1,5-2.cm. So, they might have choose a location that could be stimulated in 2014. You can partly do that at the right VLPFC with a coil used by most rTMS providers.
 

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The problem with the used of coils to deep rTMS is that they have not been approved for the use in any indication. I just came across this news. The FDA have just cleared that the used of a deep coil from Magventure in the treatment of OCD. So, this might give private rTMS clinics an options to get a coil for deep rTMS. This will open up for locations in depression and depersonalization that have never been tried before besides in research. I think for OCD they will stimulate the medial prefrontal cortex and anterior cingulate . These ares are also active in depersonalization so run a OCD protocol could be interesting. I hope this coil will get a formal approval in Europe too. There is a rTMS clinic 1.hours drive from where I live. They use Magventure but have only treated at the left and right DLPFC that almost pointless to try them with that. Hope they get it.

The approval is here. https://www.magventure.com/component/k2/news/magventure-received-fda-clearance-for-ocd-2

Their coil for deep rTMS looks like this. It is used by the leading rTMS researcher like, Canadian Jonathan Downar for depression in people who do not respond to normal rTMS. With such a coil 90% of the prefrontal cortex is now open for stimulation. You are going from normal coil that can go 1,5 cm deep to a coil that can go 4-5.cm deep.New world with new treatment options.

https://www.magventure.com/tms-research/products-overview/research-coils/coils/cool-d-b80
 
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