[Carpacano]

Hello everyone, this is my first post on this forum. It's been 4 years since i've started feeling DP and DR symptoms after taking a strong dose of cannabis alcohol tincture. I basically gave up on life after that; I've barely managed to complete lyceum/senior school by enrolling in a private school and after that i took a year off. I was sure that my life was ruined forever and that i would not be able to do anything with it. But this year I decided to enroll in University and take a hold of my life. I spent almost the entire first semester doing nothing, with the exception of an exam that i just completed. It was very tough; I didn't even sign up for the final test because i was sure that i was not gonna make it. I signed up for it two days prior (absurdly late, i managed to participate just because the goodwill of my professor), tried to study for it (it was harder than it should have been) and passed it with a good score. I didn't feel anxious for it, nor happy that I've passed it or even interested in what I studied (i'm sure i'll forget everything in a month because of this damn short-term memory).

So, to get to the meat to the post: Along these 4 years i've seen 7 (or maybe 8, not sure) psychiatrists and no-one was of particular help. Some medicine helped me want to actual get up of bed, but this feeling of being on autopilot, of time not being continuous and not feeling almost any emotion are all making me want to drop life again, because if i ever find myself with a fulfilling life,even if the god-awful concentration and memory i have because of DPDR let me, i would still not be happy because i'm just unable to feel. It is hell and I want out, so I searched the internet for a bit and found the rTMS treatment to be actually pretty useful against DPDR. I've tried going to a psychiatrist that had the machine (which he mainly used for cocaine addicts) but he was all but practical with it: he couldn't even tell me what the frequency used was, which is important, as it should be 1 Hz because the therapy aims to "calm" hyperactive areas. After a week of treatment with him i'm considering to drop him in favour of a more "professional" specialist, especially because i felt like things were getting worse (but maybe it's just nocebo). I've also tried searching the net for rTMS centers that could help me but found nothing. I called a center near where I live but they didn't know what I was talking about.
So I'm asking: Does anyone here have any experience with rTMS in Italy/Switzerland or maybe center western-europe? Anyone has center recommendations?
Thank you all for reading, and sorry for the long post.

 

[leminaseri]

Hello everyone, this is my first post on this forum. It's been 4 years since i've started feeling DP and DR symptoms after taking a strong dose of cannabis alcohol tincture. I basically gave up on life after that; I've barely managed to complete lyceum/senior school by enrolling in a private school and after that i took a year off. I was sure that my life was ruined forever and that i would not be able to do anything with it. But this year I decided to enroll in University and take a hold of my life. I spent almost the entire first semester doing nothing, with the exception of an exam that i just completed. It was very tough; I didn't even sign up for the final test because i was sure that i was not gonna make it. I signed up for it two days prior (absurdly late, i managed to participate just because the goodwill of my professor), tried to study for it (it was harder than it should have been) and passed it with a good score. I didn't feel anxious for it, nor happy that I've passed it or even interested in what I studied (i'm sure i'll forget everything in a month because of this damn short-term memory).

So, to get to the meat to the post: Along these 4 years i've seen 7 (or maybe 8, not sure) psychiatrists and no-one was of particular help. Some medicine helped me want to actual get up of bed, but this feeling of being on autopilot, of time not being continuous and not feeling almost any emotion are all making me want to drop life again, because if i ever find myself with a fulfilling life,even if the god-awful concentration and memory i have because of DPDR let me, i would still not be happy because i'm just unable to feel. It is hell and I want out, so I searched the internet for a bit and found the rTMS treatment to be actually pretty useful against DPDR. I've tried going to a psychiatrist that had the machine (which he mainly used for cocaine addicts) but he was all but practical with it: he couldn't even tell me what the frequency used was, which is important, as it should be 1 Hz because the therapy aims to "calm" hyperactive areas. After a week of treatment with him i'm considering to drop him in favour of a more "professional" specialist, especially because i felt like things were getting worse (but maybe it's just nocebo). I've also tried searching the net for rTMS centers that could help me but found nothing. I called a center near where I live but they didn't know what I was talking about.
So I'm asking: Does anyone here have any experience with rTMS in Italy/Switzerland or maybe center western-europe? Anyone has center recommendations?
Thank you all for reading, and sorry for the long post.

forget rtms.

1. it will never change or influence how you psychologically became depersonalized in the first place

2. it is so poor researched you could do irreversibely damage to your brain and no one can guarantee the opposite not even mayer gross. i tried rtms last year and i regret it so much. what if i will never recover due to the rtms treatment because it did damage to my brain? can anybody on this planet prove me? no.

3. mayer gross please dont try to give me an answer with your knowledge about rtms it doesnt matter for me. keep it for yourself i wont read fhat.

 

[35467]

I have tried rTMS and I am very aware of all locations in Europe,- including Italy. I am Italian on my fathers side.
There are many problems related to rTMS and depersonalization. The trails are all very small and done nearly a decade ago with conventional rTMS.
Conventional rTMS is the one approved for mostly depression with stimulation at either the right or left DLPFC. These are areas that is not very deep in the brain. Conventional rTMS can only stimulate at a dept of 1.cm. This rules out many locations for stimulation and only why rTMS is not so established. In major depression with stimulation of the left or right DLPFC you only see a remission in 50%,- so 50% do not have any benefits at all. Today we know that is because their depression have another location that is deeper in the brain. A deep coil that can go twice as deep was developed in 2015 and is also used today in some clinics,- it can go deeper and many with major depression who fails respond to locations like the dorsomedial or the right orbifrontal cortex, If you include these locations you likely can treat 80-85% of all cases with rTMS.
When the rTMS trails was done around 2012 at the right TPJ in New York and the right VLPFC in London they was very restricted by the technology at that time in their choice of locations. It is very clear when you read their studies and the brain imaging prior to them. There are other locations showing up but they are to deep to intervene in and test.
The sizes of the trails was between 15. and 9. It is very small and likely related to depersonalization is not very known. It is difficult to find money from funds and correctly diagnosed patients.
The trails have no placebo group and no follow up. So, their results could have a relatively high placebo effect that was never detected.

To try these partly highly experimental locations you need a provider with a conventional TMS (all have that) but also a neuronavigation system to find locations. Conventional rTMS are only made for the left and right DLPFC and they are large and easy to find. To find the right VLPFC or the right TPJ you need to have a system with either a MRI of your own brain or an algorithm in a navigation system that might make a locations that is accurate. Most can not do that. There are no providers in England who have neuronavigation so all those English who have tried and failed might be due to they didn't stimulate the locations correctly.

rTMS Italia have both a deep coil and neuronavigation at their location on Sardinia. I was in contact with them but they never replied. I think they will not have anything to do with depersonalization as the publication are small and the locations and case reports very conflicting. It becomes to experimental and the risk of failure likely too high. Their prizers (100.euros pr. session) are fair and their equipment on of the best in Europe. There is also a psychiatrist in Firenze but I think he might be 3-4.times more expensive. He also have neuronavigation.

There is a clinic in Lucerne, Switzerland who have neuronavigation and have tried both the right VLPFC and the right TPJ In one patient DPD with a effect close to placebo. I think the prize was close to 300-400.euros pr session.
He made some videos about it here.

I have tried it Budapest in 2020 for 12.sessions at the cost of 50.euros pr. session and had a MRI done of the brain in Budapest at the cost of 70.euros. Felt no benefits.
So, there are location never tried and recent publications have also pointed towards a open trail with the conbination of rTMS and fMRI scan so they can see the networks in the brain for changes after rTMS as a way to isolate the locations at play.
sTMS is also in development and uses 3.small coils and works differently. The aim is to reset brain oscillations in the brain with stimulation. They are abnormal in many conditions and could likely play a central role in DPD.

 

[Carpacano]

2. it is so poor researched you could do irreversibely damage to your brain and no one can guarantee the opposite not even mayer gross. i tried rtms last year and i regret it so much. what if i will never recover due to the rtms treatment because it did damage to my brain? can anybody on this planet prove me? no.

Part of why I was doing my treatment even if the operator was someone that didn't even know what was he doing, is that rTMS is completely safe. Or so I have been told. I'd like to know more about this, if you have anything that backs up your claim I'd be more than happy to read it. Thanks for replying by the way.

First of all, thank you for such an insightful post. I appreciate it a lot. This could make me take a trip to Sardinia pretty soon. As much as i'm sorry that you didn't receive any benefits with rTMS, the video you posted gave me great hope, and i hope to try to replicate what the OP of the video has done soon, even is there's no guaranteed success and even if his last video was a bit of a let-down. Regarding how you tried contacting the Sardinia rTMS: what methods have you tried? What languages have you used? I can call them and try to have a conversation in Italian on their stance about "personalized" treatments. Also, is what RemySan said in his latest video still the most up-to-date treatment option for DPDR (Theta Burst Stimulation to both the right DPLFC and the right anterior TPJ)?

 

[35467]

As I understand from his other videos and personal communication with one I know there was not some real changes that made a difference.

I wrote in English to rTMS italia in 2019 and a prof. replied that they would look into it and give me a reply. I sent him some more information of what had been tried. Never heard from them since. They have many conditions on their site and I suspect as I wrote that the trials done and case reports are too small, to contradictions in locations that many would conclude that it is not understood and tried. They have many conditions on their site that have been tried in trails and replicated in a reasonable size. Depersonalization is not on their site.
I have tried the right VLPFC and so have Remysan. None of us have tried the right DLPFC. Many americans can get conventional rTMS though insurance and many,-likely several hundreds have tried the right DPLFC without effect. Many post on Reddit about it. The right DLPFC and also the right VLPFC is to me not central locations.

When you look and functional and structural brain scans done on depersonalization then both the dorsomedial and the right orbifrontal cortex are found active or enlarged as if they are overactive. . You can not manipulate with these areas with a conventional coil. You need a deep coil and it was not developed when those trails was done. Look things develop; computers, cars - but according to some all brain stimulation (magic magnet) is here and developed. If you look at those doing research into brain stimulation for psychiatry and neurology there are high hopes that it might break many refractory states and the next decades will make radical changes.
So, to me the locations could be wrong,- I think they are. The trails are very small and many locations have never been explored.
From a medical point of view a trail with only 9.patients at the right VLPFC and 15.patients at the right TPJ is very small, no follow up for sent backs to rule out placebo, no replication by others is very weak research.

The dorsomedial prefrontal cortex is a depression site that also works in cases of PTSD and OCD. A location never tried in depersonalization despite both the anterior cingulate and the dorsomedial cortex have been found overactive in depersonalization,- very OCD like.

I read some where that nearly 70% who gets rTMS in italy is for addiction to cocaine. They do not really treat so many psychiatric conditions as depression, OCD.

 

[Phantasm]

People talked about rtms years ago. Sounds like snake oil.

 

[leminaseri]

People talked about rtms years ago. Sounds like snake oil.

exactly. just let stimulate your head and youll be cured

 

[35467]

If you want to try rTMS I recommend you wait for some months. There have been a French rTMS trial that have been delayed for some years restricted to the Paris area doing rTMS at the right angur gyrus. Prior to covid outbreak they still missed 30% of the trail. Might come out soon. The size should 100.patients and placebo controlled so 50% have not been given an active treatment. There should be follow ups on all patients in the trail for more the 3.months and a selected brain scans prior to rTMS and after in some of the patients. So, it is a trail with a high validitet and there might be some considerations when it comes to response and non-response that might be useful. You will stand much better with such a publication in a clinic. A French girl who had have DP for 7.years and was a part of the trail and responded wrote two years ago in a Facebook group a post and said the 50% of those treated until then and who had been given the active rTMS had a response,- 50% didn't

Depersonalization Disorder: Therapeutic Effect of Neuronavigated Repetitive Transcranial Stimulation - Full Text View - ClinicalTrials.gov

Depersonalization Disorder: Therapeutic Effect of Neuronavigated Repetitive Transcranial Stimulation - Full Text View.

clinicaltrials.gov

A recent italian publication also adresses the right angular gyrus/TPJ role in depersonalization and rTMS. The text is more a evaluation of the data for the role this locations plays in depersonalization. There is no active research in Italy for depersonalization. Targeting temporal parietal junction for assessing and treating disembodiment phenomena: a systematic review of TMS effect on depersonalization and derealization disorders (DPD) and body illusions

 

[Carpacano]

I actually applied to that French study recently, and received an automated e-mail in response saying that the doctor directing it was away and that she will return on the 7th. I hope this study to clear any doubts on the treatment, since it's the only one -i think- that factured in placebo patients. Regarding the italian study: is there somewhere I can find the study in italian? I've translated one of those 2014 american studies in italian so I could show it to my psychiatrist, but having another study natively in Italian would be much better. Maybe i'll try asking the doctors directly. Oh and also thanks again for your post and the information in it.

 

[35467]

You can not be a part of the French trail or any other research trails as a foreign national. This is very regulated by international conventions that you can only do medical research as citizens of that country that have approved a medical trail. In reality is the legal protection close to zero if something in a trail goes wrong for a foreign national in another country,- so it is banned.
A medical trail is not a treatment,- but a way to get understanding about a condition and if a interventions works. They are highly selective in almost all trails in medical studies. If you recently have been ill,- you are excluded due to the risk a high placebo effect, you have to have been diagnosed by a referring psychiatrist that practice close to the place of the trail and the place of the trial have to test you and likely have to have a conversation with you for some hours to see if you for fill the criteria for the condition. The average duration of the condition for patients in trails or research I have read is between 7. years to 13.years (brains scans) I know this is a problem in some research done in both Germany, Switzerland and likely also France to get patients. So, will not show up to brain scans it they have to travel for some hours (Switzerland) The condition is not very known among psychiatrists and many with depersonalization do not consult a psychiatrists continuously but only for a period to see what they have to offer. That is why research units is more central for research. They will have a register of people correctly diagnosed living close to the research unit they can contacted directly and with medical information on them all.

In research you have to live close to where the trail is done. The angular Gyrus trail was originally planned to be done in two places in France,- Paris and one at a hospital in the south of France. The other hospital was dropped likely for economic reason. So, it is restricted to the Paris area. In all trails that have a duration of several months you have to live in a close location to the trail as daily, weekly and monthly contact for treatment and follow ups are central. If people do not live close to the location they might not show up for follow up and it can do much information never gets collected- the trail date on these patients will be of no value and the trail in itself with to many of such patients will lose validity and economic founding for research to the researcher who have accepted it will be more difficult. They will never take patients in that they do not know or there is a risk that they might not show up to follow up. So, they will chose people close the location of the trail.

In studies and trails for depression many trails are very large and can be done at 8-10.locations with several hundreds of patients and they have to live at one of the locations. They wants patients they know and stability that show up and the information they get is valid and stabil.

English in "lingua franca" for all medical and scientific publication,- nothing gets published in a national language. Most publication in national language is more directed towards general practitioners in medicine and is more general about medical conditions and treatments. Never specific and detailed research articles

I wrote about the French trail because it will formalize some thing better so you as a paying patients could use it as basis for treatment so it became less experimental with more information. We know that this location likely benefits likely 50%. So, those who was a part of the trail 50% got a "fake" treatment,- those who write to her as you have and others have likely want a fake treatment as there is a 50% chance in the trail that you will get the fake/placebo treatment. Those who got the active was there 50% chance for response. So, for those being a part of the French trail there Is a 25% chance of getting better. So, you are motived to go to Paris and pay for hotels in Paris and come to follow up 1.mouth and 3.mouths after? It is a lot of travel and hotels to pay for and Paris is expensive. There is a lot of people very dedicated to being part of this trail and experiment that they would use their money and time for it. It is expensive when there is 50% chance of getting a fake treatment. I lived in Budapest for 30.euros a day for Hotel and 50.euros for each rTMS session-. But, being part of the trail (free "treatment") with a 50% of getting a fake is something I cannot follow.

 

[Carpacano]

So, for those being a part of the French trail there Is a 25% chance of getting better. So, you are motived to go to Paris and pay for hotels in Paris and come to follow up 1.mouth and 3.mouths after? It is a lot of travel and hotels to pay for and Paris is expensive. There is a lot of people very dedicated to being part of this trail and experiment that they would use their money and time for it. It is expensive when there is 50% chance of getting a fake treatment. I lived in Budapest for 30.euros a day for Hotel and 50.euros for each rTMS session-. But, being part of the trail (free "treatment") with a 50% of getting a fake is something I cannot follow.

If it was the only way to get a treatment like this, then i would, surely (it also helps that i have a family of relatives living in Paris that would take me under their roof, and that all my university courses are done via videochat ). But yeah, having a 100% REAL treatment is better (i was also in a very bad spot when i applied so my enrollment was not 100% logical). Also I guess if you lived in Paris then the benefit of it being free would be way more appealing.

 

[35467]

As I said. You can not as foreign national be referred to a trial in a country where you not some kin of citizenship or permanent stay. You have to be referred by a psychiatrist in that country who have diagnosed you as having depersonalization and you also have to meat some minimum criteria for the trial; duration of condition, no comorbidities like major depression, substance abuse, personality disorder ECT. I think you miss that it is not a free treatment. There is a 50% chance it is the "fake treatment". It is not published but I think that there could be a very high drop-out in the trail due to it. That between 5 to 10.sessions of the total 15.session many will drop out as they felt no changes.

 

[leminaseri]

If it was the only way to get a treatment like this, then i would, surely (it also helps that i have a family of relatives living in Paris that would take me under their roof, and that all my university courses are done via videochat ). But yeah, having a 100% REAL treatment is better (i was also in a very bad spot when i applied so my enrollment was not 100% logical). Also I guess if you lived in Paris then the benefit of it being free would be way more appealing.

you are misunderstanding everything about depersonalization and derealization disorder or secondary symptom doesnt matter. did you ever think, a brain stimulation can solve years of unsolved repetitive trauma, toxic shame, low self esteem? explain me dude how should that coil change in any way one of the mentioned things? we are not robots or cars where you can repair something. i tried tms as well and im the biggest scientific explanation for it didnt work. not even a bit. do you know why? because you try to dismantle a nut with a baseball bat.

 

[Carpacano]

we are not robots or cars where you can repair something.

We might not be robots, but our brain runs on electricity. Even if i'm aware of the small (or null, if ever) effects of rTMS on DPDR, why wouldn't something be able to help with a psychological issue just because it's "physical"? Psychotropic drugs exist, they're "physical" and they work, and they help a lot of people. rTMS itself helps a lot of people with psychological issues. At the end of the day our brain is made from chemicals and electricity, and there's no real reason to filter out any possible "physical" treatment that could help you.

 

[leminaseri]

We might not be robots, but our brain runs on electricity. Even if i'm aware of the small (or null, if ever) effects of rTMS on DPDR, why wouldn't something be able to help with a psychological issue just because it's "physical"? Psychotropic drugs exist, they're "physical" and they work, and they help a lot of people. rTMS itself helps a lot of people with psychological issues. At the end of the day our brain is made from chemicals and electricity, and there's no real reason to filter out any possible "physical" treatment that could help you.

drugs do also just mask the symptoms. it is not a recovery at all.

 

[Carpacano]

drugs do also just mask the symptoms. it is not a recovery at all.

That's not true at all but even if it was, i'd just take all the help i could get