# Collectors meta-discussion



## luctor et emergo (May 22, 2015)

Great effort. As there are soon to be 5 or more active posters on Lamotrigine this can be really helpful for comparison.


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## thy (Oct 7, 2015)

Awesome, thanks TDX! I was going to go back and do something similar to this at some point. I'll probably finish looking for stories tomorrow. I suspect there may be a fair few 0s that actually turned out to be 1s, 2s, or 3s. Just as an example, Jay, the second on the list, presumably carried on increasing his dose but just never came back to post, so he may well have seen some improvement. If only there was a way to get a follow up from these people! I suspect the response rate would be closer to 35% in reality, but thats clearly just speculation. Still, even these results suggest that lamotrigine is definitely a drug worth trying. Hopefully you will turn out to be a 3 

Also promising is the small number of people indicating a worsening of symptoms.

One thing not to forget is that a lot of these people are taking lamotrigine in combination with other drugs.


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## TDX (Jul 12, 2014)

> Hopefully you will turn out to be a 3


I hope so for you, too. The chance for a 3, which means (almost) full remission is unfortunately quite low. At the moment I'm at 50 mg/day and don't notice a beneficial effect or side-effects.

I would like to know why Sierra et al's numbers and ours are so different. I have some ideas. For example drug-induced DPD (mostly because of Cannabis) might be more prevalent here than at the clinic (where it is only 15%) and might respond less well to Lamotrigine. It would be interesting to know for each user if the DPD was caused by drugs. Maybe in the drug group nobody responds to Lamotrigine, while in the non-drug-group the number rises to ~50% like in Sierra et al's study.

Another interesting question is if patients, whose symptoms get worse by antipsychotics, can respond to Lamotrigine. I conjecture, that they *don't* respond to Lamotrigine, because in the Ketamine-Modell, antipsychotics don't make the symptoms worse, too. Unfortunately we don't have the data to answer this question.

Both of us are in the non-drug group, and I'm in the group of people whose symptoms don't get worse, while taking antipsychotics. I hope this might mean that the chance for us is more like in the studies of Sierra et al.

I'm also still collecting data from the old forum. On this forum I found many cases who took Clonazepam. I don't know the excact number, but the Clonazepam alone or Clonazepam+SSRI had a higher response rate than Lamotrigine here. In my opinion Clonazepam clearly deserves a clinical trial.


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## thy (Oct 7, 2015)

TDX said:


> I would like to know why Sierra et al's numbers and ours are so different. I have some ideas.


Your theories do seem plausible. However, I suspect the biggest factor is that we simply don't have enough follow up information for these people; presumably many of them would have continued to increase their doses but just never came back to post about how they got on.



TDX said:


> I hope this might mean that the chance for us is more like in the studies of Sierra et al.


I hope so too!



TDX said:


> I'm also still collecting data from the old forum.


For people taking lamotrigine? It would be good to include that date with the above date we have if possible.



TDX said:


> In my opinion Clonazepam clearly deserves a clinical trial.


I agree, its a shame they don't seem to be more proactive about conducting research.


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## TDX (Jul 12, 2014)

> For people taking lamotrigine? It would be good to include that date with the above date we have if possible.


Not only for Lamotrigine, but for every medication. In Andys Forum only one person (Andy himself) seems to have tried Lamotrigine, so the old forum doesn't add much to our data. But this forum gives quite much data about Clonazepam.


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## thy (Oct 7, 2015)

A thread like this could probably be created for every possible medication regime, though we wouldn't have much data on many of them.

In the above table we should probably disregard users that didn't give any indication of the effects of the drug, since their responses could have been positive, negative or neutral. By including them, at the moment you are assuming that they are negative or neutral.


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## TDX (Jul 12, 2014)

Updated the list based on thy's findings. Unfortunately response rate dropped a bit.

We don't know which response rate is correct. But the chance of 23.9 might be in agreement with Sierra et al's clinical trial where of 9 patients nobody responded.

The probability that of 9 patients nobody responds would be *p(x) = (1 - x/100)^9*, where *x* is the chance to respond to Lamotrigine. If *x = 54* we would have *p(x) = 0.09%*, which is very low. But if *x = **23.9* we would have *p(x) = 8.55%*. This is also quite low, but it's possible. Maybe Sierra et al had bad luck with their sample.

But even if the chance to respond to Lamotrigine is roughly 25% everybody should try this medication. The chances might be lower that what the Depersonalization Research Unit tells us, but it's still high enough to justify an attempt.


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## thy (Oct 7, 2015)

What happens if you disregard people that said they were only on 25mg per day or less and said they didn't notice anything yet? I don't think there is any point in including those people since they don't really tell us anything. For example, there would be no point in including Guest_murman in our results.


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## thy (Oct 7, 2015)

TDX said:


> But the 25% might still be relevant, because the people with a low dosage might have discontinued the Lamotrigine, because of intolerable side-effects. This must be taken into accound, because in real life you cannot benefit from a medication you can't titrate high enough, because of side-effects. So this case is equivalent to non-response.


I agree. I'll go through the data at some point and double check it.


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## thy (Oct 7, 2015)

TDX, I am pretty computer illiterate, how do you produce that table?


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## TDX (Jul 12, 2014)

[code]Table[/code]


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## thy (Oct 7, 2015)

Autonomic Space Monkey said:


> I hope this med is of some benefit to you thy.


Thanks!


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## thy (Oct 7, 2015)

TDX, I have used a slightly different system to you. I have only used 0 for "no improvement of DP-symtpoms clearly stated". If they haven't given any indication as to the effectiveness of the drug I have put "unknown".

So for the Outcome column, I have:

unknown = no indication given as to the effectiveness of the drug

0 = no improvement of DP-symptoms clearly stated.

1 = Minimal improvement

2 = Significant improvement

3 = Almost or complete remission.

-1/-2/-3: Worsening of symptoms.

Please anyone feel free to dispute my conclusions in the above table. It would be useful to get as accurate a data set as possible. Im sure there are still more posts out there that I haven't looked at yet as well.

Now we disregard:

(i) people on a dose of less than 100mg (unless they were unable to tolerate it, in which case we include them)

(ii) not possible to determine if drug had an effect on DP/DR symptoms (i.e. the "unknowns" in the _Outcome _column), unless they were unable to tolerate it.


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## TDX (Jul 12, 2014)

> Please anyone feel free to dispute my conclusions in the above table. It would be useful to get as accurate a data set as possible. Im sure there are still more posts out there that I haven't looked at yet.


You seem to be a bit more generous with the ratings 1, 2 and 3 while I'm more restrictive. I only used them if the user clearly stated that the DP-symptoms were improved. I didn't use them if they stated that other symptoms like mood, concentration, anxiety and so on got better.

I also set "Unknown" = 0, because I assumed that if there was a significant effect the user would report it, because DPD is a life-altering disorder.

As far as I know "Guest_Le_Chat_*" = Dreamer. So we have n = 73 and 22 responders (= rating 2 and 3), so a response rate of 30%.


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## thy (Oct 7, 2015)

TDX said:


> You seem to be a bit more generous with the ratings 1, 2 and 3 while I'm more restrictive. I only used them if the user clearly stated that the DP-symptoms were improved. I didn't use them if they stated that other symptoms like mood, concentration, anxiety and so on got better.


Yes, well I consider things like concentration and memory to be DP related symptoms, so I may have made some extrapolations there that you haven't made, though I don't think we are drastically different. Feel free to point out any in particular that you think I might have classified incorrectly, I'd like to be as objective as possible!



TDX said:


> I also set "Unknown" = 0, because I assumed that if there was a significant effect the user would report it, because DPD is a life-altering disorder.


hmm thats a tough one. There are currently 5 "unknowns" (who aren't already disregarded because of (i)) so I guess it makes a bit of a difference to the results depending on how we interpret them.

The 5 disputed "unknowns" are:

qbsbrown: "I am in the process of beginning the Lamictal + SSRI combo"

comfortably numb: "I have no idea if lamotrigine has had any effect on my dp/dr and brain fog because the clonazepam im on has totally put it into remission for the past 2 years.It only took about 1mg of clonazepam to pretty much abolish my dp/dr and brain fog. It took a little less then a week for it to go away after starting on clonazepam."

insaticiable: "I don't know how much it helps with DP/DR since I was taking it already a year prior to developing the dissociative symptoms."

staples: "I can't really remember if it did anything for the dissociation though. I didn't come near 300mg, so maybe that could have also been an issue."

Guest_allan35_*: this person literally just hasn't reported how the drug has effected him. I accept that this guy probably could be a 0.

I'd probably say, include Guest_allan35_* and staples and assign them a "0" and disregard the other 3 under (ii). What do you think?

This gives n = 64 and 23 responders, which gives a *response rate of 36%*.

7/64 = *11% experienced near or complete remission*

16/64 = *25% experienced significant improvement in their symptoms *

7/64 = *11**% experienced a worsening of their symptoms *

13/64 = *20% were unable to tolerate*


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## TDX (Jul 12, 2014)

I would like it if we really had a chance of 38%.

If you are bored there is another thing you could do: Try to find out which of these 60 people have drug-induced depersonalization disorder. This way we could find out if my conjecture that for example Cannabis-induced depersonalization disorder does not respond to Lamotrigine, is true. If this was true this could explain why the chance on this forum is lower than in Sierra et al's publications (50 -70%). Drug induced depersonalization disorder might be more common here than in their clinic (where 15% had drug-induced depersonalization disorder).

I will continue to collect data from the old forum (I'm reading *all* posts and extracting all statements about treatments and assign to all statments for a treatment of a user a number. This way I won't miss anything. Downside: It's veeeeeery sloooow).



> Yes, well I consider things like concentration and memory to be DP related symptoms, so I may have made some extrapolations there that you haven't made, though I don't think we are drastically different. Feel free to point out any in particular that you think I might have classified incorrectly, I'd like to be as objective as possible!


In my opinion the rating should only show the effect of the treatment on core symptoms on depersonalization disorder, so for example if people feel less detachted from their momories.

For example in the old forum many people benefited from Clonazepam even if the depersonalization did not improve. I would give them a 0.

By the way: My impression from the data is that Clonazepam might be even more effective than Lamotrigine.


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## TDX (Jul 12, 2014)

> Seriously we need more of this.


I'm working on this, but it's very tedious to read all the posts. It seems like thy had another approach: He searched for all people who tried Lamotrigine. This is faster than my method, but the downside is that it does not necessarily find all treatment attempts.


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## thy (Oct 7, 2015)

TDX said:


> I would like it if we really had a chance of 38%.


You don't think this result is plausible? You think I have been too generous? I am still adding to this lamotrigine data so the figures might change a bit still, but I doubt by very much.



TDX said:


> If you are bored there is another thing you could do: Try to find out which of these 60 people have drug-induced depersonalization disorder. This way we could find out if my conjecture that for example Cannabis-induced depersonalization disorder does not respond to Lamotrigine, is true. If this was true this could explain why the chance on this forum is lower than in Sierra et al's publications (50 -70%). Drug induced depersonalization disorder might be more common here than in their clinic (where 15% had drug-induced depersonalization disorder).


Good idea, I'll do that at some point.



TDX said:


> I will continue to collect data from the old forum (I'm reading *all* posts and extracting all statements about treatments and assign to all statments for a treatment of a user a number. This way I won't miss anything. Downside: It's veeeeeery sloooow).


Nice one! Will be worth it in the end.



TDX said:


> In my opinion the rating should only show the effect of the treatment on core symptoms on depersonalization disorder, so for example if people feel less detachted from their momories.
> 
> For example in the old forum many people benefited from Clonazepam even if the depersonalization did not improve. I would give them a 0.


Noted.



TDX said:


> By the way: My impression from the data is that Clonazepam might be even more effective than Lamotrigine.


That's good.


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## thy (Oct 7, 2015)

TDX said:


> It seems like thy had another approach: He searched for all people who tried Lamotrigine.


I am happy to go through and do the same for other drugs.



TDX said:


> but the downside is that it does not necessarily find all treatment attempts.


You mean all attempts by a given user?


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## TDX (Jul 12, 2014)

> You don't think this result is plausible? You think I have been too generous? I am still adding to this lamotrigine data so the figures might change a bit still, but I doubt by very much.


It's difficult to come to a conclusion here. You made the dataset smaller and had some plausible reasons to do so. I think at this point transparency is important, so that everyone can see how we reached our conclusion.



> You mean all attempts by a given user?


Yes. If you want to see how it looks, here is the current version:
http://s000.tinyupload.com/?file_id=00612092594981072619

After I finished Andys Forum I'll continue my work in the german forum dpforum.de.vu, which contains 108623 posts at the moment.


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## luctor et emergo (May 22, 2015)

TDX said:


> I would like it if we really had a chance of 38%.
> 
> If you are bored there is another thing you could do: Try to find out which of these 60 people have drug-induced depersonalization disorder. This way we could find out if my conjecture that for example Cannabis-induced depersonalization disorder does not respond to Lamotrigine, is true. If this was true this could explain why the chance on this forum is lower than in Sierra et al's publications (50 -70%).


Does not respond at all? This could be bad news for me (as i have smoked Cannabis for 5 years, but am uncertain about it's triggering effects). How did you make this conjecture?


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## thy (Oct 7, 2015)

King Elliott said:


> Hey lads. Sorry for ripping your thread apart. Your excellent work so far has inspired me to make this a more serious project.
> 
> The lamotrigine thread now only contains raw data and tables.
> 
> The meta-discussion has moved here. Here we discuss collection methodology, locations, collation, presentation and quantitative analysis.


No problem, seems like a good idea to me. I have added the final % response rates at the bottom of the lamotrigine thread. I thought it would be useful for people to get the full overview all in one thread, rather than having the final results buried away in this thread. Then they can come here if they want to get more of an insight into how we did the analysis.


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## TDX (Jul 12, 2014)

> How did you make this conjecture?


I've never seen someone with Cannabis-induced DPD respond to Lamotrigine. Of course this is not a good base for my conjecture, so it may be wrong and should not prevent you from trying Lamotrigine.


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## luctor et emergo (May 22, 2015)

Never seen... as in you reading all posts and not found cannabis induced dpd sufferers who tried lamotrigine and had no alleviation...
or
... never tried lamotrigine at all et cetera?

In 2007 I was taking Lamotrigine max 200mg/d with sertraline max 75mg/d for only a few weeks. During that period in my life I was stupid, depressed and irresponsible enough to drink and use cocaine with medication.

So it's fair to say a second round is legit. Today 25mg + 25mg.


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## thy (Oct 7, 2015)

King Elliott said:


> *On the bias of our results*
> 
> Our primary problem is a historical bias. The vast majority of people who join DPSH are current DP sufferers. They often bring with them a history of negative psychiatric trials. Many cases of positive outcomes will never be included in our results because successful treatment prior to joining DPSH would, for many, negate the purpose of joining DPSH in the first place. The sample found on DPSH is therefore skewed in favour of treatment-resistant cases.


I think this is definitely true to an extent. Though if you have got to the point where you are considering any kind of medication, I would have thought that by that time you would probably have discovered this website? Then the question is, given that they have discovered DPSH, are people with positive outcomes more or less likely to make a post about their experience than people with negative outcomes.


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## thy (Oct 7, 2015)

King Elliott said:


> I've got the blessing of the admins to send a single follow-up email to each dropout.
> 
> Now we need to start making a list of people to follow up on.


Is this still on the table? I was thinking of going through the lamotrigine list and making a list of names to follow up. If we get a good number of replies this could improve the accuracy of our results drastically.


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## thy (Oct 7, 2015)

Elliott, here is the follow up list. List 1 includes the people for who we have virtually no info on how they responded. List 2 includes people where we have slightly more info but still pretty minimal and it would be good to get more details of their experience. So basically list 1 is higher priority.

Will you send out a generic email or would it be better for me to tailor questions to each user based on the information that we already have from them?

List 1

Guest_tinyfairypeople_*

Sketch2000

no3one

DP_swe

tori

Guest_murman

qbsbrown

StandAlone

tazi

oo_oo

missjess

karrilho67005

kristikristi65

Westcoast Ghost

optimusrhyme

birdiehead

Guest_*

brian3

arxiloxos

sciphi

Guest_allan35_*

nemesis

pfpc

enigma

rainboteers

AussiePheonix

Tom Servo

Newky

bipo

livinginhell333

jaffah

List 2

Jay

S O L A R I S

resinoptes

hennessy

RafinhaBrasil

revdoc

opie37060

Rawry

stoemmekluut

jenny1

Living in a fog

rightwrong99

Absentis


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## luctor et emergo (May 22, 2015)

King Elliott said:


> I'm going to be the one sending the emails from a specially created email account. One email per person. If they don't reply, we write them off.


What is the status of the e-mails and the replies?


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