# My attempt to get rTMS treatment so far



## 35467 (Dec 31, 2010)

So, I have mentioned in some of my posts here with in last 6.months that I was trying to get rTMS treatment for depersonalisation disorder. If one looks into the medical literature about rTMS for depersonalisation there are two trails on diffrent locations( the right TPJ and the right VLPFC) and then some reported cases on other locations( right and left DLPFC). It is not a cure but it can give significant reductions in symptoms. I could see that the most promising trial was the trail done at the depersonalisation research unit in 2015 at the locations called the right ventrolateral prefrontal cortex (VLPFC). It reduced symptoms of depersonalisation with 44% on average. It mostly numbing and not so much dissociation. I could also see that the right VLPFC was very difficult to locate with the method used at private clinics. You have to have a special equipment to make a calibration from a MRI scan of the brain that is processed into a computer.It is called neuronavigation. Almost non rTMS clinics in Europe and the US cannot (95%) do that. It is mostly used at research universities. So, rTMS for depersonalisation is closed for paying patients. So, I tried to locate a private clinic in Europe that had neuronavigation. I found one in Italy that has 4.clinics with many diffrent types of rTMS including something called deep TMS that can no be used for depersonalisation but they had some locations with neuronavigation. ( I am a dual citizen and have italian citizenship too).The clinics dates back to 2017 as most rTMS clinics in Europe do. rTMS is very new. So, I wrote a synopsis to them about depersonalisation disorder and rTMS trails done and their advisor, a professor wrote back to me the same day that they would look into it and give me an answer soon. That was in the beginning of Juli. I didn't hear anything i thought that is was related to the very large trial done in France with more then a 100.patients at the right angular gyrus that should be published very soon as it ended in sept and they waited for its publication before they would offer rTMS for depersonalisation .

Then i became a little nervous after 4.months that i had these assumptions and i wrote to them some weeks ago that if they had contacted me i haven't seen it and It might had ended in spam mail and asked if my assumption was right- they where waiting for the publication of the french trail. They didn't reply me. So, i tried to look into the ownership of the rTMS chain and I could see that the professor was only employed as a adviser and had no ownership in the chain. So, i think the owner has denied to take me in and the professor might have been embarrassed to give such a promise. So, no reply.

So, i am thinking of my next steps. I still have the minimal demand that they can make the correct locations and they have read publications into depersonalisation disorder like rTMS trails, functional brain scans of mental processing in depersonalisation.

I have found one more locations that has neuronavigation and it is owned by a very high ranking professor that has been professor in Europe and in the US. He has a very impressive CV. He has done several publication with rtMS, given lectures at Harvard about it. I will wait for the publication of the french trail because there also are a very large follow up in patients with the use of functional scanner. So, they can see what symptoms are gone and those still there and who the brain works. I expect the trail will give significant reductions in dissociation but not in numbing. The trail will properly point towards that two locations -one for numbing at the frontal lobes like the VLPFC and one for dissociation like the angular Gyrus. They are both a part of the network the brain uses for cognitive regulations of emotions. Depersonalisation disorder is likely to be a disorder related to a overregulation/suppression of emotions. So, to work with two location within the network of emotional regulation might give significant reductions. But, it is my assumption based of what we know of the past trails done. So, i will write to that professor when it is published and see what his response is and his prices for rTMS and consultations.

There is a competitor to those i was in contact with in northern italy and they also treat non-italians and writes they are expanding. They only have deep TMS and it can not be used in depersonalisation. But, if they are expanding they might get the correct equipment to do it in the coming year. I will write to them too.

I live in Danmark in there is only one private rTMS provider but they can not make these locations.I have not contacted them as it is pointless. Italy has many researchers that done rTMS trails at university and the first trail done in depersonalisation with rTMS was done by a Italian at Columbia University in New York. I think there will be better options in Italy than in Denmark currently.

But as most clinics in Europe dates back to 2017 (rTMS for depression was approved in Europe in late April 2017) there will likely be more who invests in neuronavigation in Europe and the US so one can try rTMS. The german maker of neuronavigation for rTMS is called "Localite" says their business in growing and might indicate that more private providers are investing in making more precise locations than those used currently to depression.

So, I will look into rTMS again in the beginning of the next year when french trail is publish.


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## 106473 (Feb 7, 2017)

Great research, highly intelligently thought out read, think this put a lot of people of with the amount of details.

I will be saving your page so I don't forget to check in every once and a while, all the best


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## 35467 (Dec 31, 2010)

WreckingHotelRooms said:


> Great research, highly intelligently thought out read, think this put a lot of people of with the amount of details.
> 
> I will be saving your page so I don't forget to check in every once and a while, all the best


Thanks. Ok I have found a rTMS clinic 6-7.hours drive with train from where with I live. They have neuronavigation and ought be able to locate the right VLPFC if they have a MRI scan of the my brain .They mentions depersonalisation on they site. But, their references into the disorder are very poor and sporadic. I would not try them with the references on their site right now. Perhaps they haven't updated the site. My theory is they have never tried depersonalisation but they are open to try it. So, i will write a synopsis into depersonalisation disorder with references to trails with rTMS, symptom clusters in depersonalisation, the models of the brain cognitive regulation of emotions and the role the right ventrolateral prefrontal cortex(VLPFC) have in regulation emotion/suppression/depersonlisation and how angular gyrus is in the same network of regulation and makes dissociation/derealisation. I will try to see if they are open to give me rTMS at the VLPFC until emotional numbing is gone and then move to the angular gyrus and work with dissociation. The French trial in not publish yet and it could be out in the beginning of the next year. But i think that i can argue for they are a part of the same network. If angular gyrus stimulated with rTMS briefly in normal gives a sense of alienation from the bodys action. It can also give people a change in the autobiographcal memory like something experienced was not reality me and less ego centric, a distance to ones biographcal memory. But, i will write to them so they some material to look into as i assume they are open to depersonalisation when they have it on their site. Angular Gyrus alone will likely only take dissociation and not numbing like the TPJ trials that is close to angular gyrus .The right VLPFC alone will take numbing but not so much dissociation. Take them both as a part of the same network of emotional regulation; Depersonalisation gone.


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## 35467 (Dec 31, 2010)

deleted.


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## teal (Oct 9, 2019)

Godspeed, Mayer-Gross.


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## 35467 (Dec 31, 2010)

Thanks, I have just put some final touch on the letter and i post it directly to the owner the coming hours. I feel a little nervous because i was turned down by the others in that way. If i am rejected there i don't know what i shall do. I could try the professor in Italy but i think the costs will be twice as high. The problem is not just neuronavigation but the lack of knowlege into the disorder. So, i write these synopsis into the disorder to make sure that they know what is needed to know about it. So, they have to spend some time reading into the disorder. So, it is two variables that makes it difficult to find a treatment to give it a fair trails.


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## teal (Oct 9, 2019)

We will find a way. Definitely. I don't have energy to get much done, hence I skim-read more often than close read. Right now I am investing all my energy on other things, but later, I really do think that working with the foundation, lobbying for neuronaviation at one clinic, could bear fruits. I have done much, much harder things in the past.

If you'd want it, I could come with feedback on your letter. But I know unsolicited advice is never welcome, so I am not coming with it unless you want it.


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## teal (Oct 9, 2019)

Here comes some unsolicited advice, Mayer-Gross. It's out of love, so please don't shoot me!

I would most definitely have done this in two steps. First I would've tried to get a foot in the door, and then I would have elaborated on what I wanted. There's a chance that six plus six hours in train would be for nothing. But meeting him/her would increase the chances drastically for getting a positive response. I know many would be reluctant to read long texts from strangers - it's just so easy to say "not for me". But if you're there, face to face, and you have printed the text, and discuss it with him/her face to face, chances are high it would end in a good cooperation.

Dear Dr. med. XX

My name is YY and I live in Cc, Denmark. I've had depersonalization for XXX years, and I see there are many promising studies where they treat it with neuronavigated rTMS. There are virtually no-one who has both the knowledge and equipment to treat the disorder in Europe, but I see you mention depersonalization on your website, and I hope you're available for a consultation, some time in December or January?

Looking forward to hearing from you!

All the best,

YY


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## 35467 (Dec 31, 2010)

It has been sent last night. If i follow your advice he might just have followed the 3.references on his site on depersonalisation and he would have given me rTMS at the right TPJ. 50% respond to that location and particularly those that haven't had the disorder for a long time. The location don't work for the emotional numbing in the disorder. I had to point out the problems with his knowlege of the disorder. If he rejects me for pointing that out and his "treatment" at the right TPJ,-i am fine with that.


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## teal (Oct 9, 2019)

The best of luck! How much do you reckon it'd cost if they accept you?

I guess what I wrote could be misunderstood. What I meant was when years and years are pouring down the drain, losing six plus six hours on a train is negligible. So the consultation would be for talking, and talking only. It's a small request you have, and it you argue well for it. But it is-in my experience-far easier to to sway someone face to face than over letter. Partly because many simply don't read long texts from strangers, because of the hassle and the fact that it's unpaid-whereas a consultation is paid and when someone is sitting there, it makes it harder to say "not for me".

A talk consultation would be cheap compared with the repeated treatments. Probably it would cost about the same as the train ride. Anyways. Done is done!


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## 35467 (Dec 31, 2010)

deleted


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## 35467 (Dec 31, 2010)

Found one clinic in Poland who has neuronavigated rTMS. I don't know if they take foreign patients or their costs .i contact them later

So, i have one in north germany that haven't replied to my inquest that mentions depersonalisation as a indication on their site there was also problems with the mail adress. I will contact them for a reply in the new year and if rejected i would like to know on what ground because it will be the second rejection i get then.

It could be that the trails with rTMS are too small and they don't dare to replicate them.There could be a lot of reading into the disorder that they will not use time on. I then have one in Italy that I think can be expensive as it is a very high ranking prof. that also have professorats in the US. He has given several lectures at Harvard about rTMS. I think might to be able to trace 2-3 more clinic in south or eastern europe. I will not contact new clinics before the french trail with 100.patients is published with the right angular gyrus as the publication would solve some contractions with the current publications. I fear that i could end up i Italy with very expense treatment. Might look into a place in Arizona that have had one patient.

The danish company that make 33% rtms equipment in the would has teamed up the german company to make better locations without use of neuronavigation. I might contact then too. about the econimic cost related get a treatment into depersonalisation disorder.


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## 35467 (Dec 31, 2010)

deleted. The german i thought was a private clinic is a university research facility not open to foreigners and only do experimental trials,- not treatments.


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## teal (Oct 9, 2019)

Munich. Very good.

I think your requests are modest. If the doctors use neuronavigated rTMS on their patients, then directing the machine at the right VLPFC at a specific frequency should be completely fine.

I'll elaborate on my previous message, post #8. I didn't mean like come, talk, and treat in rapid succession. But rather a consultation just like you have a "pre-op talk consultation" a month before surgery.

I think talking, one to one, with the researchers would make it easy (or at least easier!) to convince them the right VLPFC is the best place to start.

Good luck, the best of luck, with both getting treatment and recovering. Rooting for you!


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## 35467 (Dec 31, 2010)

deleted


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## teal (Oct 9, 2019)

I want you to succeed so badly, Mayer-Gross, so here comes part two of unsolicited advice. Use it if you find it useful!

I think the shorter the email, the greater the chance of a reply. So I think such an email as this, where you go humble and go short would engender an engaging email conversation.

Dear Dr. med. XX

My name is YY and I live in Cc, Denmark. I've had depersonalization for XXX years. The diagnosis has been a dead-end. No treatment, no cure, no prospects for a normal life. But I've just become aware of *this rTMS study, which lit a hope in me*. Do you have the needed equipment to do such rTMS sessions? I have both funds and time to get treated, but alas, the only place where they have such equipment and skills and treat patients is in the United States. It would be really helpful if you could administer such treatment at your clinic in .

Looking forward to hearing from you!

All the best,

YY


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## 35467 (Dec 31, 2010)

My rejection at the first place has nothing to do with length of the text. First if you look at depersonalisation disorder and rTMS on pubmed you will get these locations; the left DLPFC, the right DLPFC, the right VLPFC, the right TPJ and soon the right angular gyrus. That is a total of 5.locations. In depression there are much fewer locations and much larger trials. So, the picture is very confusing with so many locations and sample sizes are so small. So, many choose not to go into the disorder at all for this reason. Many then go into it and choose the locations they can find with the equipment they have -like the right and left DLPFC and TPJ. You have to read a lot to go into the disorder as it stands.

I think that my rejection at the first place has to do with the business in Italy. I wrote to them and the medial advisor, a prof said they would look into it and reply me soon. They did not. I have since got some information about the rTMS clinic and the prof. is not owner but advisor -so the owner might have rejected to take depersonalisation as a condition in. They have 12.conditions right now on their site. That is many compered to others. 70% of their patients are getting treatment for cocaine addiction,- the rest for mental disorder, mostly depression according to interviews in italian press. So, most of their income is centred around addiction. A rTMS machine can give 8-10.sessions a day. They have open 6.days a week for 12.hours but it is still 350.patents a year. So, if they can use all their capabilities now ,-why take more in or use a lot of time on a condition that might generate a little income for them or they don´t have the capacity to address. I think the problem is there. Depersonalisation is not on their site but i think they will look into it when they have more capacity. There are a expansion in northern italy in rTMS treatment and i think other providers will come in the near future.

I will not go into contact with new rTMS clinics until the french trail at the angular gyrus is published. I think they will address to conflicting or confusing things there is right now with the current locations that come up with a search on pubmed. With that being the most recent and largest trial to date it will also be the one people will start to read about the condition.


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## curiousmind (Oct 31, 2019)

https://flashclinic.hu/rtms/ --> this rTMS clinic in Hungary has neuronavigation, and the pricing seems reasonable (though im not farmiliar with what the standard prices are in other countries): 150,000 ft (510 usd) for 10 sessions. This particular clinic mentions depression and OCD as the main psychiatric conditions and parkinsons, epilepsy and tinnitus under the main neurological "diseases" they treat. I highly doubt they have ever heard of depersonalization (because in the entire country there is only one psychiatrists currently treating specific cases of depersonalization, and his modus operandi is the Sierra method) but perhaps they may be open to offering their services in the case that someone sends them a synopsis in the way that Mayer-Gross has with other clinics. I will do this and update you here later. The website states that they are willing to treat even conditions like bipolar and personality disorders, situations where there is minimal support from studies to warrant rTMS as a treatment. They may be inclined especially if the recent French trial targeting the Angular Gyrus turns out to be efficacious.


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## 35467 (Dec 31, 2010)

Their price of 50.euros per session is cheap. Smart TMS in the UK takes 2500.punds for 10.session or 3300.dollars and they don´t have neuronavigation. The clinic in Italy that didn't reply me have neuronavigation and theta burst and they take 120.euros pr. session. But you need a MRI scan done or they likely can use a fake brain in their system to calibrate from. A MRI scan might be cheap Hungary too.

I use this model of cognitive regulations of emotions that is divided into 3.stanges and it might explain why emotional numbing are separate to the other symptoms.The right VLPFC is in stange one and angular gyrus in stange 3. With rTMS you adresses the disorder at different stages where emotional numbing is related to the right VLPFC and the embodiment of regulated emotions to angular gyrus. The right TPJ do not play a role in that model but it is related to it and it might explain the poor response rate to that location and the many session needed. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4801480/

I would personally go after the emotional numbing at the right VLPFC to start with and when there is a response go to the right angular gyrus for the rest.

So, i hope that the french trials will show a higher response rate than the right TPJ trail and there will be a smilar pattern like the TPJ trial that emotional numbing is the symptom most least affected by the rTMS, I hope they will look into cognitive regulations models of emotions in their evaluation. That will likely point towards inclusion of the right VLPFC. I think they will follow up after rTMS and look for changes with both structural and functional scanners. So, they will like come up with a model for the disorder.

I think the trial might be publish in "Brain Stimulation"that have started to have the publications open for free. The first number for jan-feb 2020 is out so it might be in the next number coming out in the middel of feb.


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## curiousmind (Oct 31, 2019)

Please keep us informed if you find when and where the study is releasing.


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## 35467 (Dec 31, 2010)

curiousmind said:


> Please keep us informed if you find when and where the study is releasing.


I will. I do a search two or tree times a month. Typically the abstract will come up first ahead of print of the article on pubmed. I think it will be published in "Brain Stimulation". The whole article will be open for free it that is the case.


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## 35467 (Dec 31, 2010)

I would go for the right VLPFC and emotional numbing today and let the other aspect of the disorder wait until the french trial come out because there are to many conflicting data related to locations- like the right TPJ or angular gyrus.


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## 35467 (Dec 31, 2010)

The price for the session are extremely differentiated from country to country. I think in the US without insurance it is around 300-400.dollars pr. session. Most with insurance in the US that covers rTMS gets rejected because it often only covers the left and right DLPFC for depression and not a location like the right VLPFC. Many with depersonalisation in the US has been rejected for this reason..In England close to 300.euros. pr session. So, if Italy can offer it to 120.euro or eastern Europe to 50.euro there is a huge difference. One should add to other thing and that is that if one has to travel expenses to hotels becomes a expense that can be as high as a session pr. day. In rTMS treatment for depression som clinics offers two session pr day to outsiders. So, 20.sessions can be done in 2.weeks the stay is reduced with 50%. So, to find a location with fair prizes, that might be open to two sessions a day in a location where hotel are cheap is important to try to find. Smart TMS in England can never be cheap with the prices they take and the cost of stays compared to eastern Europe. For people from the US Europe could also be be cheaper if their insurance don´t cover and they have to pay all expenses themselves. A rTMS clinic in eastern Europe or latin america with psychiatrists that have read into the disorder might be much cheaper for americans too.

The more use of theta bursts TMS that he mentions should also bring down prizes on TMS. With theta burst TMS, the treatment itself is only 40.sec to 3.min and not 35.min. So, they ought to be able to take 3-4 times more patients and it ought to bring prizes down. In depersonalisation all TMS is inhibitory and inhibitory theta burst is continuous burst for 40.sec while stimulated is intermediate stimulation for 3.min.

https://www.magventure.com/tms-research/theta-burst-stimulation


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## 35467 (Dec 31, 2010)

There was a online lecture a month ago by prof. Anthony David about depersonalisation disorder and rTMS treatment.

It was divided into these segments.

1. To recognize the clinical features of depersonalization/derealization;

2. Understand the possible neurophysiological basis for emotional numbing and its relationship to DP/DR;

3. To be familiar with neuroimaging research in DP;

4. To understand the theoretical basis for rTMS as a possible treatment for DP/DR.

The lecture is on-line but one shall pay a fee or be a member to hear it.

https://www.clinicaltmssociety.org/civicrm/event/info?reset=1&id=57


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