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Discussion Starter · #1 · (Edited by Moderator)
Hi guys

Hi guys. I am a 26 year old guy who are having a really hard time.

For my whole life I have experienced a very disturbing constant blank mind. I will try to elaborate as good as I can.

By blank mind I mean that my head is simply always empty. I don't have that constant stream of thoughts or inner monologue basically all people have. Also I can't picture anything in my head. This may sound very nice to some people because most people struggle to shut off the constant mind chatter. But it is not. It makes me unable to function socially since I have nothing to say. I have social needs as everyone else but this really makes social life impossible and makes me feel terribly lonely. It also makes it very hard for me to have an interesting job since this requires complex thinking. It is like my brain only have a few bits of RAM available when other people have several gigabytes.

Ever since I was 13 years old I have been talking to so many psychiatrists, psychologist and therapists because of my symptoms. But no one understands it. I don't even understand it myself.

I am talking to a therapist right now who really want to understand me and help me and that is good. She believes all this is a result of CPTSD. But when I read about symptoms of C-PTSD there seems to be no match. This makes me worried. Because this again fuels my anxiety about having this strange unexplainable condition no one seems to understand.

What I have tried so far without a succes: A tremendous amount of therapy (several 100 hours) and various medications (paroxetine, citalopram, sertraline, venlafaxine, mirtizapine, agomelatine, pregabalin, propranolol, methylphenidate, benzos).

What I see there is left to try: rTMS, ECT, SSRI+lamotrigine combo, MDMA-assisted therapy and psilocybin-assisted therapy. I might only have the patience to try one or two more options. I am considering MDMA-therapy and ECT. I would like to hear if you have other suggestions. Because this is not a life and I am suffering to an extreme extend.
 

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Hey Forever blank,

I hope that you will find the support that you need here.

There are people who had been suffering for a long time, and have seen some improvement when all hope seemed lost.

If your condition is indeed due to CPTSD, which is something I learned a lot about in the last few years, then recovery, or at least a great improvement really is possible.

Stay around.

Best,

A.
 

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You could have the dissociative subtype of PTSD witch is also marked by depersonalization and derealisation. Depersonalization disorder as a primary form is also a possibility.

ECT will not work. Symptoms of depersonalization in depression often predicts a poor outcome for ECT. It has been tried in many patients with depersonalization many years ago without effect. It is also very difficult to get ECT in many countries for even very depressed people.

I read a lot of a award winning psychiatrist, Ruth Lanius who does a lot a research into the dissociative subtype of PTSD with brain imaging. She says that blank mind, depersonalization, emotional numbing is related to a disruption in the "default mode network" and also overregulation done in the prefrontal cortex.It this poor integration that gives this sense of a lost self. I think she is working up testing some interventions. In theory you can if you have an idea of the locations central in the regulation done in the brain try to normalize these and make a integration of the "default mode network". The problem is two. rTMS is relative a new intervention and still in development. The technology used (approved) today can not stimulate as deep as needed to normalize many areas central to many conditions. This is the case with many depressions and other conditions too. In research more advanced rTMS is used witch can do it and more advanced is in development. The current rTMS used in clinics and approved is likely useless. You also need to have more robust models of emotional regulation done by the brain to intervene at the locations making the state.

Ruth Lanius also have some hope that fMRI guided neurofeedback can train the brain to come out of this defensive state. I live in Denmark and there is a danish-german project to develop more advance rTMS equipment to treat the 15-20% with depression that is refractory to current medication. The ambition is also to intervene in other disorders. From what I understand they might try to make a fMRI brain scan in many disorders to look for abnormal regulation of emotions and networks. From these data they will intervene with rTMS. I expect that such programmes will like come many countries when this equipment is fully developed the coming years.

You could give a combo of lamotrigine a try.
 

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Discussion Starter · #4 ·
Thank you for your reply. In fact I am also from Denmark. So I guess you know all about the opportunities and limitations of our health system. I have never heard about dissociation being a sub type of PTSD. But when I read about it it makes so much sense regarding my symptoms and experiences. This was really was I searched for, thanks. Do you suspect the same thing for you?

I don't know if you are aware of the recent MAPS study regarding treatment-resistant PTSD and MDMA-mediated psychotherapy? 25 out of 28 participants no longer had PTSD symptoms after 3 MDMA sessions. The thesis is that MDMA chemically creates a feeling of safety (primarily through amygdala inhibition and the release of various hormones and neurotransmitters such as oxytocin, serotonin, norepinephrine and dopamine) thus making it safe enough to proces the trauma(s) that was the reason behind the symptoms in the first place. I found two therapists in Denmark who treats people with PTSD using this exact protocol with a great succes. Unfortunately they have at least 12 weeks wait list so that is a very long time atm. But I signed up.

Regarding rTMS it is only available if you live in Region Midtjylland. Maybe there are some private practioners I am not aware of. I also heard about I guy in Rotterdam who seemingly treated several people with dp using rTMS. It is interesting stuff but it is a logistical challenge when you do not live there.

I might talk to my doctor about starting on an SSRI since I am severely depressed. That should make the wait time before my mdma session more tolerable.
 

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There are two kinds of PTSD -the most prevalent is a sympathetic variant with being in a constant "fight and flight mode" -75-80% have that. Then there is a dissociative subtype that is immobilization (parasympathetic) with shot down to emotions and thoughts,- DP/DR. These two states are very diffrent in response to treatment. The dissociative subtype is very refractory to interventions that works in some with the sympathetic variant. So, you can not mix experiences for one to the other type. Many with normal PTSD gets better one cannabis while the other gets more symptomatic.

You can read about the two types of PTSD here with brain illustrations.

http://europepmc.org/article/MED/20360318

In rTMS it like cars. To a retard a car is a car. There is no difference between a Trabat and Ferrari and a koenigsegg. They have 4.wheels and a engine. The same with rTMS. To the retard rTMS is the same. It is a magic magnet put to his head. He thinks he can get a Ferrari or a Koenigsegg at a Trabant dealer. I am aware of the rTMS provider is Århus and in Rotterdam. These are "trabant" dealers. Conventional rTMS with a normal 8.coil with a stimulation dept at 1.cm, no neuronavigation system. In reality they can only stimulate at the left and right DLPFC. They can also only locate these two locations.

If you look at brain imaging of depersonalization there are some conflicts about the central locations. But, these locations are seen as potentially central; The dorsomedial prefrontal cortex/anterior cingulate, the right ventromedial prefrontal cortex and the right ventrolateral prefrontal cortex. A normal rTMS coil can not stimulate the two first at all due to their dept alone. The right ventrolateral prefrontal cortex can be partly stimulated like 30% with a normal conventional coil. I have tried 12.session at this location with the use of neuronavigation without effect. Some depersonalization have also put this location into question . But I have tried stimulation of 30% of this area. You also need neuronavigation for locations. 95% of rTMS providers do not have that. So, rTMS is likely the cure but not the type and quality that is offered today.

To give an impression of rTMS with neuronavigation and a deep coil doing rTMS at the dorsomedial prefrontal cortex this video from a research lab in Canada gives an impression. More advanced than that is in development.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4692428/
 

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Discussion Starter · #6 ·
You seem to know a whole lot about rTMS. It is interesting for sure. Do you know any places where it is done 'the right way' with access for everyone? Preferably close to us.
 

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No.

There are two problems and you have to have an answer to both of them.

1) In Europe and the US rTMS is only approved for treatment at the right or left DLPFC. Almost all rTMS machines are only set up for locations and stimulation of these two locations. They can treat 50-60% of depression at these locations but not the rest as you need more advanced equipment as deep coil and neuronavigation to go to other locations. Deep coils are only used for research and is not approved for clinical use yet. So, it is illegal to use a deep coil in clinical use at a clinic or at a hospital.So, no clinics will have them. They can only be used in approved trails( experiments). The use of deep coil for OCD have been approved in the US recently and might happen in Europe too.

2) This is the largest problem. There have been not testning done of these locations coming out as overactive in states like depersonalization, dissociative subtype of PTSD. A recent publication recommend a trail where a combination of fMRI and rTMS to test these locations to find those central, mapping networks ect. If you do not have this information it will be very difficult to find a provider to do treatment "in the blind" at so many location to test them. It could be 8-10.session pr.location to see if it works.

I hope that a rTMS provider in Eastern Europe with the use a navigation form localite and equipment from mag venture with a deep coil would open. They might be able to offer sessions at 50.euros. A MRI scan for navigation is also cheep in Eastern Europe. Had my done with a Siemens 1.5 Tesla for 80.euros in Budapest.
 

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I would like to comment on this, OP. I have the same issues as you my friend. And believe me when I say that you dont have any special disorder of some sort. It's definitely due to high stress and could be PTSD/CPTSD. Of the Dissoctiave subtype as Mayer-Gross explained. I myself have transitioned from the 24/7 "Fight or flight mode cptsd/ptsd" to the 24/7 Numb dissocative type since a year. I basically did it to myself, I fueled my brain huge stress, thoughts. And alot of screen time. I have done 5 sessions of rTMS at the Rotterdam guy you're reffering to. I quit after 5 sessions because it made me way worse. But that was back when I wasn't as numb as I am now. About the MDMA therapy, it seems very promising for the both of us. And it's one avenue I am very curious to take and perhaps will do so in the future. I have still a few options left that I am pursuing. Like just going back to work etc, it seems hard but we are much more capable then we think. Isolation has made it 100x worse as well. Good luck
 

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It is my personal opinion that rTMS will be the treatment for depersonalization disorder. That is also the view hold by those who have done research into the disorder. The rTMS trails done in depersonalization was done in 2011 and 2014 in very small non-placebo control trails in patients group of the size between 9-15. That alone will put the validitet into question-simply to small trails. They used neuronavigation to find the right VLPFC or the right TPJ. You can not find these locations without neuronavigation. Very few private clinics in Europe have neuronavigation to replicate these trails. None, in the UK, one in Germany, none in Scandinavia ect. These trails was done with conventional rTMS as deep coils was developed around 2015 for the use in research. Many locations coming up as central in overregulation of emotions and making the "numb" state, obsessive thinking ect, is simply to deep in the prefrontal cortex to stimulate with a conventional coil. They could not at that time have done some testing of locations with a deep coil. Deep coils will likely be approved and used in Europe the coming years for depression and OCD. It is my hope that a research unit will open again. Hopefully in Germany as they seems more aware about depersonalization disorder. A trail with more advanced rTMS equipment that can stimulate these areas and that is not static on one location but explorative in finding locations, open for that regulation might not be the same in all and there might be differences in the locations and networks that needs stimulation. Such an approach is very dependent on doing multiple fMRI brain scans of the resting state of the brain to look for locations and emotional regulation in the brain. Patients might have to go thought 2-3.fMRI scans in such a proces until you get a picture of the condition. Most functional brain scans done in depersonalization was done between 2000 and 2015. Most will say that those done prior to 2010 is outdated and close to useless. Error in the software used in fMRI have been found from that periode. There have been massive improvements in software and also in the hardware that makes the images since. fMRI have also become much faster. So, a research unit at a university with very good and advanced scanning capabilities is important. A study of the midbrain could not be done until 2016. 7.tesla scanners was not developed then and they are highly expensive. A 7.tesla scanner costs around 4-6.million euros. There is indications that the networks in the midbrain is affected in dissociation. The state of immobilization is done by a shift in a structure called the "periaqueductal gray". It is highly affected by internal states in the body. In the types of PTSD there are seen differences in the activation of different areas in the "periaqueductal gray" so "flight and flight" response can be seen in one area while immoblisation in another. This can not be seen by a normal 3.tesla scanner. There will likely be networks from the midbrain to other areas in the brain. The derealisations aspect is likely connected to this network. It is thought that this immobilization is turned on by an area in the right ventromedial prefrontal cortex. A deep location too. So, one could likely make a inhibition of this network with more advanced rTMS at the right ventromedial prefrontal cortex. But, there is a need for a research unit that have better founding, have a larger staff, have much higher sample sizes in the patient groups they study. This is the problem. The possibilities to make a invention in depersonalization is much higher today than 5.years ago. But, in psychiatric research the focus for rTMS is refractory depression. These interventions are developed for the 15-20% with major depression who do not respond to current interventions. Depersonalization is in the slipstream of this development.
 

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Discussion Starter · #11 ·
Thank you for your post Aridity. It is great to have another validation that this could be due to C-PTSD. This would also explain my constant anxiety and hyperviligance. The worst thing is having a condition that no one understands or can explain. That fuels hopelessness. If the MDMA-therapy that I am attending in 3 months will have any significant effect I will definitely write a post about it. If that actually works it would be huge since we will suddenly have a new option for treating dp/dr.

I have just been in touch with the psychiatric system and I spoke to different doctors and other personal. I was honest about my PTSD suspicion and also my plans of doing MDMA therapy. To my big surprise they didn't reject any of it and they actually seemed to like the idea. In this week I will discuss with a psychiatrist how I can best survive until the therapy sessions. Maybe the best thing will be to be put on an SSRI for the next months and then taper of again before my therapy sessions.

I agree 100% that being unemployed and isolated is not got for anything at all. Different circumstances lead to this and now I occasionally think I would not even be able to work at all. You are right about the fact that we are able to do more than we think. At least we would be able to do a simple job. For how long have you been dealing with your symptoms?
 

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Discussion Starter · #12 ·
Thank you for your post Mayer-Gross. I really hope science one day will make it possible to get rTMS treatment specifically for dissociation. But as you also write then this is not a possibility to day. At least it would not be done in the optimal way.

Most on the posts on this site focus on the physical/neurological aspect of this condition. While this is definitely an important factor I personally believe that in order to get to the very root of our condition we have to find the underlying psychological reasons as well. That is tricky in conventional therapy since the nature of our condition makes it hard to get there. But maybe "enhanced psychotherapy" will do the trick.

I can also see how dealing with the physical aspect would help to get a good momentum started. If for instance rTMS would allow us to snap out of dissociation for x months then we have the ability to form new habits, gain new experiences and also get a grasp of the triggers behind our dissociation. Then we would be able to work with this sideways of getting rTMS to support our brain. But again, it is not possibility right now.
 

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In theory it is possible to do a open explorative trial with rTMS and I think it should be done to test locations and networks in the disorder with rTMS and fMRI. Deep coils will likely be approved soon. Magventures deep coil have just been approved for OCD in the US. I know of a clinic in Europe witch uses the coil despite it is not legal yet for depression. I was in contact with them in 2018 but they turned me down. They will not go into depersonalization because it is very confusing witch locations is central. In reality it could be two locations and networks you have to work with. This network based approach in rTMS is what the current development is trying to address.

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

But a rTMS response shall usually be maintained with one session a mouth or half the number of sessions used the first time every 9-12.mouths. It is the case in most with depression.

In general the view is that the ambition with rTMS is a reduction in symptoms of at least 50% but many sees a larger reduction. Then people (mostly depressed) have to work with other interventions too like medicine, therapy act. I think in depersonalization heart rate variability biofeedback might be an intersting supplement.. It is thought the dissociation is a "top-down" inhibition of emotion but also the body from the prefrontal cortex. The vagus nerve is highly affected. If you can removed this "top-down" inhibition with rTMS you can likely make a "bottom-up" with heart rate veribilty biofeedback it with affect the periaqueductal gray and also the dorsomedial prefrontal cortex. It is to build up a parasympathetic "safe state" as an alternative to the dissociative unsafe state that have parasympathetic elements.
 

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I h

Thank you for your post Aridity. It is great to have another validation that this could be due to C-PTSD. This would also explain my constant anxiety and hyperviligance. The worst thing is having a condition that no one understands or can explain. That fuels hopelessness. If the MDMA-therapy that I am attending in 3 months will have any significant effect I will definitely write a post about it. If that actually works it would be huge since we will suddenly have a new option for treating dp/dr.

I have just been in touch with the psychiatric system and I spoke to different doctors and other personal. I was honest about my PTSD suspicion and also my plans of doing MDMA therapy. To my big surprise they didn't reject any of it and they actually seemed to like the idea. In this week I will discuss with a psychiatrist how I can best survive until the therapy sessions. Maybe the best thing will be to be put on an SSRI for the next months and then taper of again before my therapy sessions.

I agree 100% that being unemployed and isolated is not got for anything at all. Different circumstances lead to this and now I occasionally think I would not even be able to work at all. You are right about the fact that we are able to do more than we think. At least we would be able to do a simple job. For how long have you been dealing with your symptoms?
I have been dealing with dp/dr on and off for more than 20 years at least. For the past 9 years it's very prominent, and the past 3/4 years it's the worst. I also said that I wanted to try MDMA therapy to my therapist and psychiatrist, and just like you they liked the idea and did not say don't go for it so yeah. Just be prepared to have a clear intention a great setting etc. About trying an ssri for the upcoming months to stabilize a little bit is a good idea as well. I am going back to work at the end of this month after a 1,5 years being homebound. So wish me good luck, I am going to work with youth who are hard to handle lol. I don't know how I will react and function in that kind of environment but what the heck.
 

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Discussion Starter · #15 ·
That is a hell of a long time as well. I am sorry. I suspect when dp was a coping strategy from childhood it is really deeply rooted in us and does not spontaneously subside as is seen when it arrises from e.g. a drug experience. But maybe the both of us might in fact have the solution in our hands.

Good luck starting work again. Fingers crossed! It sounds challenging and it is possibly going to be a little bit of a shock to your system to start again. But when you get back in your routines I bet it becomes easier and you stand a better place than now. My previous job was with adults hard to handle their lives so I see a big similarity here. We don't make it easy for ourselves lol. Best of luck!
 
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