[106473]

I am not a doctor, but do get a lot of emails, PM's etc, I know people who have recovered, yada yada yada. I just want to point out a few things when trying medications that I've learnt or hear a lot.

1. "It didn't work for this 1 friend I know" (remember we are all different), I know people recovered on medications I've hated. I'll not even mention them to put you off!

2. Someone got this side effect, i'm scared to take it. Well this is part of trial and error, again we all respond different. If it's not working tapper off with your doctor, but you won't know if you don't try. Also read the side effects, their side effect could be in a small percentage.

3. Antidepressants or Antipsychotics don't work after trying a couple, there are so many and vastly depends on the person.

3. Going against the grain, there are a lot of medications, but i'd at least start with ones that are known to give results, I've listed some below in order of common to least (not most effective). The most common i'd say on this site is; AS + AD combo, get one working first IMO then add the other and see how you fair.

4. Having a P Doc who doesn't know what DP is… kind of useless IMO unless they are actively researching. Dissociation is not rare, if that word is foreign to them, i'd not bother, took me 8 to find one I liked.

5. Having a P Doc who works with you, not against and is always thinking, which leads me to my main point, knowing when to stick or twist. Only recently I got a message from someone being an SSRI for two years with no results, going to a P Doc every 3 weeks! That's nuts if you ask me. Defiantly the time to change medications, I wouldn't give anything personally more than 5 months with no results with increases. I on the other hand have been in a position where I changed meds too quickly due to other health reasons (had to stop everything to rule it out), unfortunately the same medications no longer have any affect on me, not even a little, this phenomenon is actually common.

I want people suffering from Anhedonia to read Ken Gillams Ad Algorithm. It's multiple choice. I have tried enough meds to know how I react so mine works out like the following but yours will vary or if you have no point of reference I'd go with his option A for each step.

https://psychotropical.com/ken-gillman-ad-algorithm/

(what I am going to try based on the algorithm)

Step 1 - Nortipyline 6 weeks

Step 2 - (if needed) add Citalopram with Nortripyline 6 weeks

Step 3 - (if needed) add Amisulpride 6 weeks

Step 4 - (if needed) stop Citalopram, wait two weeks and add Tranycpromine with Nortipyline (Amisuplride depending on results).

I've also drawn up a quick list of the most common from being here a lot and if I was starting again, what order I'd do it in, but as mentioned, AD's + AS's are so wide and so many, I'd spend a long time ruling out those.

Do not source these yourself, it goes without question, even ADHD meds are lethal if you don't know what you are doing, having your heart checked etc but perfectly safe when under professional guidance.

1a) AD's (SSRI's/SNRIs):

Nortriptyline

Mirtazapine

Lexapro

Effexor

Clomipramine

Pristiq

1b) AS:

Amisulpride

Abilify

Olanzapine

Geodon

2) Lamotrigine often paired with SSRI (see Kings College study)

3) Naltrexone - opiate antagonists (see Russian Study)

After 3 it's a wild card if you ask me, much less common but worth knowing about;

Keppra (Anti Convulsion) - Study that it works in some HPPD cases

Wellbutrin (Dopamine) - Usually paired with AS

Pregabalin (Anti Convulsion) - Usually paired with AD

Modafinil (Light stimulant)

Vyvanse (Stimulant)

Sulpiride - MIO - Haven't researched as it's rarely given out here

Suboxone - Opiate - Near impossible in UK

The best way I've found to try so many medications is printing of cases where it has worked and studies.

Hope this helps.

 

[106473]

I don't totally get your point, this is a thread for someone wanting to take medications, you clearly are not in that camp.

Point 2 and 3 are proven. So i'm confused at your bias here. The research involved and the leaflet you even get shows the percentage of side effects reported in a control group, I also go onto say, it's trial and error, so if it's not working for you taper.

"Antidepressants and antipsychotics don't work after trying a couple," is that actually true? YES. On average the NHS found it takes 4 for depression that's not even Major Depression or Treatment Resistant that need many more attempts on average. So again yes.

Defiantly. I'll give you an example, Quietapine could not be more different than Olanzapine for instance, both AS, i've been on max dose of both. Very different. You wouldn't even think they were in the same class. It's not worded as it should read, you might hit the jackpot. It's meant to say, IF they aren't for you, doesn't mean you won't find one that isn't. Another example, Zoloft SSRI is MILES away from Mirtazapine (TRI), so different.

"Psychiatrists should use genetic testing initially, instead of relying on their own blind intuition" - If we could do that, we could test for what's causing DP and use this magic to cure it, I know MANY in USA who get genetic testing and it does dam all, because DP is not genetic unless you were born with it, so that doesn't even make sense.

"AD which generally don't have permanent or dangerous side effects." ERM... no? read PAWS, read about how many have lost sexual function from short AD trials for life, read the short term effects how suicide rates are a danger in the first few weeks and how the brain after long term most never feel the same if they come off them because of the down regulation of serotonin. "Research on animals has found that antidepressants can shrink the connections between brain cells and that these don't grow back after the drugs are stopped" - but we are in a position where the plan is to get well and not stop. Any good P Doc knows this and if you are on them long term will not take you off.

Antipsychotics are very ethnical, they work on receptors that ADs can't, D2 for example. They are invaluable for serious disorders but this is where you probably are getting your bias confused, for DP they are not used at Bipolar etc levels, fatal? you are having a laugh... they are mood stabalizers, for people with suicidal ideation it's maybe the only thing keeping them alive. Also go against the grain, but some Anhedonia can't be controlled with just ADs, i'd rather be on one and have emotions and feelings but maybe that's just me.

 

[106473]

"because there is no oral medication for DP" then why do people email me getting cured on medications? I really don't get what the hell you are talking about.

"Psychiatrists should use genetic testing initially, instead of relying on their own blind intuition" based on what though? if you don't know what is causing the DP what difference does it make to your biological make up, many P Doc's have said this to me and it's true, all it tells you is what you will react to in a bad way.

"About antipsychotics, I never said they're unethical in themselves. Their implementation can be unethical in many cases. Anyone looking at the field of mental health treatment with an unbiased eyes can see the severe lack of qualification in many nurse practitioners and therapists, as well as how frequently medications are being misprescribed and overprescribed. The system is also understaffed and underfunded in many cases. There are mental hospitals in the UK where only 1 out of 3 patient meals are served warm. The motivation for all this is money. If treatment isn't handled in a cost-effective way, things can go badly for patients and practitioners alike, so corners are cut in terms of quality and safety. Unstable living conditions, lack of community support, and poor nutrition also worsen mental health, all of which are prevalent in the US, the "richest country on Earth." - you just backed down on the whole thing you were arguing two seconds ago and made it about something totally different, don't even feel this is worth replying to.

"This part is just logic: the fact studies have found patients try 4 medications before settling on one doesn't mean that the 1st or 2nd medications aren't likely to work." - Wrong do some research, i just told you that 4 were ineffective. Geez now i just think you are trolling.

"It's good to have a prescriber who recognizes DP, so that they don't mislabel depersonalized patients as psychotic or schizophrenic prodromal and do harm that way. Beyond that, oral medication doesn't treat disorders involving altered levels of consciousness, unless that's untrue in which case please let me know." - Easy, read Kings College, Russian Trial and Keppra trial, job done.

"People prefer to talk about oral medications, at least on this forum, but rarely do they discuss therapy or lifestyle changes. This is not to blame patients. Maybe our corrupt global society pretends to have cure-alls to emotional suffering in the form of nifty new products and procedures because that is or was the most profitable way to promote recovery." - I go to therapy, but in TRIALS which you don't seem to read it has shown to have 0% on DP, in Anxiety yes but DP is different, if you are going to go on like you know something, have something to back up your argument, read Kings College DP centre (only for DP people) 0% was the outcome. Blaming the world ain't gonna solve nothing.

"I know a little bit about some of the medications you named in your OP. They have their times and places. Wellbutrin is effective for smoking cessation and weight loss. I heard Modafanil helps military contractors focus on the job when they're sleep-deprived. Aren't these compounds experimentally cooked up in labs and, after some trials, throw as medicine spaghetti at the human wall to see how they stick? Focus in the field of mental heath treatment needs to shift back towards social and psychological interventions, because the pharmaceutical industry is represented enough and has no treatment for DP. " okay maybe you need to understand that different people get out in different ways.

Okay Modafani for instance is a weak stimulant, https://www.reddit.com/r/dpdr/comments/4doqpg
Wellbutrin https://www.reddit.com/r/dpdr/comments/7utgid/the_simple_cure_to_dp_cured/

also a quick google away

There is a quick stimulant story for you, uncommon, that's why I listed mine in that order, but I know 4 cases of ADHD meds curing it and that's far out there as treatment, dp is not linear. Wellbutrin increases dopamine so there for easy to stop smoking and eating, but how do you know what you are lacking as many different uptakers have cured people although you don't think that' possible, which again, spend some time, like a full day reading recovery stories.

https://imgbin.com/png/C19NWSm0/serotonin-norepinephrine-dopamine-reuptake-inhibitor-neurotransmitter-png

Cooked up? most these meds are 30+ years old and we know what receptors they change. Most experts think DP doesn't have a specific one or we'd have a DP med, but no one apart from you is arguing that medication can stop symptoms.

 

[106473]

https://www.dpselfhelp.com/forum/index.php?/topic/53605-90-cured-after-twenty-years-of-chronic-dpd/

Final one I can be bothered since it's on your hated AS, this guy had it for 20 years. 1.5 weeks on an AS and he was 90% there, hasn't been here in 11 years.

Edit:

She was on this forum for years, used AD + AS to recover

 

[PerfectFifth]

"There is not yet evidence-based treatment for depersonalisation," says King's College website.

https://www.kcl.ac.uk/ioppn/depts/ps/research/neurobiologialmechanisms/depersonalisationresearchunit

We have so many harebrained approaches to mental illness rather than psychological and social intervention. I think it's because the most mentally ill don't have money to fork up and are regarded very lowly.

When someone takes a med or cocktail of meds and reports feeling better, that's not enough information to draw an evidence-based conclusion about the compounds themselves. The conditions these compounds are marketed as treatments to are not even well understood.

Right. It's very crude trial and error, throwing stuff at a wall and seeing what sticks, if anything. No proper science behind it, just hypotheses, "we think this drug does X in the brain". And then *if* something does work, you can't know if it works due to placebo or if the depression, or another psychological problem, has run its natural course. So when these substances work, they might not actually work.

 

[Psyborg]

@

WreckingHotelRooms

what does "AS" mean ?

 

[106473]

@

WreckingHotelRooms

what does "AS" mean ?

Antipsychotic

"There is not yet evidence-based treatment for depersonalisation," says King's College website.

https://www.kcl.ac.uk/ioppn/depts/ps/research/neurobiologialmechanisms/depersonalisationresearchunit

We have so many harebrained approaches to mental illness rather than psychological and social intervention. I think it's because the most mentally ill don't have money to fork up and are regarded very lowly.

When someone takes a med or cocktail of meds and reports feeling better, that's not enough information to draw an evidence-based conclusion about the compounds themselves. The conditions these compounds are marketed as treatments to are not even well understood.

Seen my DP specialist today actually and reminded me of this thread lol

Think you are confused, you obviously didn't listen to a word I said.

You don't understand this field. That sentence doesn't say what you think it does. I'll put it in much simpler terms.

It's saying they have found NO drug that you go in and 3 months later after the trial cured more than (30% i think it is in a control group).

This is what I AM SAYING. Medications CAN and DO cure depersonalization, i mean do you want my log in and password or something? or can you not be bothered to read the recovery stories? It's saying basically that people have got out of DP using maybe 300 medications, none can be measured in a control group for the fact it's a slow process, for most 3 month trial ain't going to prove anything. Two, well the Russian study marks an over all improvement in 6 weeks or something (from the top of my head, it's easy to find) that beat the placebo, that's how evidence is gathered for these trials, and the most important thing is;

There is no cure for Cancer officially. How come they get better under treatment? it's because Cancer is 500 different disorders under an umbrella term, for instance breast cancer has a high success rate, some have none (not talked about a lot because what's the point knowing these if you can't treat it).

DP is an umbrella term for symptoms, mine is officially diagnosed, my P Doc is on the board of the NHS for the UK at the top, one of 8 in the UK that can prescribe illegal 'drugs' including class A in cases that it will help and ignore law and FDA, i found that out today, but sharing the story tomorrow. I can't wait. Anyway, she knows and cured DP, she knows all about the HPA Axis, knows it inside out and she has given the green light to try the Anhedonia Guide line as she knows the medication and see's no problem with trying, our next step is a class A drug, gossip tomorrow!

Anyway, so this umbrella term can happen under many dysfunctions in the brain, so these control groups grab a load of people with DP DISORDER, it's not ILLNESS, the illness is something else, as she puts it, there is no such thing as DP, it's a symptom of another illness, this can range from mental health issue to endocrinology even people with ear infections can get it FROM having an ear infection. So getting a group of DP people together doesn't make sense.

It's like concluding that if you get 11 people who like football they will all support Manchester United, then doing a fMRI to look for rewards on when they get shown Rashford scoring a goal. Some respond, those who are Manchester United fans, some won't, because you've focused on a symptom and the cause of that will not be the same in the people you've picked.

This is why you need to see someone who is really really good, I pay a lot but I am seeing one of the best and it's so worth it as she knows what she is doing.

I am not saying medication is the only way out;

sometimes it just makes the symptoms better

sometimes it takes years to respond to one

sometimes it makes things worse (wrong tablet for you)

but what's driving me insane is some medication are the perfect fit for the underlying problem and cure the DP as a result.

READ the recovery stories, go from most viewed, it will save you time, spend 4 hours, then tell me you can't see a connection on DP recovery stories and medication. If you don't after that, i'm just gonna ignore you tbh.

If you are doing this without meds, your theory is this is OCD most likely or anxiety (OCD) which it CAN BE, but not in my case. So if you preach no medication, what are you on this site to learn?

Stop researching your condition

Only follow this method

Stop talking about your condition

Stop leaning on other people

Don't hold on to memories of your condition

Divert your mind - make it your new habit - always

Stop Accommodating your anxiety

Compliance

There do the linden method, I did it for a year, on the plus side I do all those above, I know longer attach myself to having DP, when i come on here it's like talking in the third person, as DP isn't ME but i've recovered a lot, learnt a lot as i said, so I only come here to help people, i'm not looking advice, i've got a pro, i'm only giving people access to information to tell their doctor who are not as lucky as me. I do enjoy the PM's, got a few supportive friends here when times are bad.

Anyway, I still do the linden method, but no longer have to, it didn't cure me, but what really annoyed me was one day watched a video where he said he avoids stressful situations because it still causes anxiety, I was like okay, so he got out naturally, but has to live in ZEN... yeah that's okay, but my mate got out naturally, but takes medication to actually stop stress bringing it back and to allow himself to run his ultra successful high pressure business. I'd pick the second one all day over the anti med expert who can't be in a stressful situation, we can't all be hippies like him and write a book that sold millions and sit and relax all day.

I tried natural and it didn't work, for a year i followed them rules, by the end i'd lost my thoughts. I wish I meant anxious thoughts but I lost ALL. No inner monologue.

There is 0% evidence btw this method works either yet you'll read how this cured loads of people, not a single bit of evidence it did. Sharing stories like Eddy did is all we have, that's what this place is for.

I'm out, but if your gonna be here, open your mind, read how people got out and think and learn, there is many ways out, there are some that won't get out but will find relief to the point the medication is enough to live life to the full, so they happily take it and there is many different versions, which is why the recovery stories below 2 years I don't read. Chronic to me is 5+ and caused usually more than a spike in anxiety.

Ps, around 6pm UK time I will try this post on my P Docs research, I would post it here but i think it will go viral, so i want the Reddit front page (only reddit users will get why this is cool), plus I need to write it out and i'm too busy tonight.

 

[106473]

You told me to read research by King's College to see all the instances they successfully cured DP, and I quoted an article on the King's College website about their Depersonalization Research Unit where they claimed to have not found an evidence-based treatment for DP. Now you're telling me that I'm confused. I've read everything you've posted here.

I'm a layman, if that's what you're saying. If you're an expert, why do you throw around the word 'cure,' and defer to sources that contradict your claims?

I may be completely wrong here, but I'm under the impression that mental health disorders aren't cured, and that neurological disorders are often successfully treated without being cured. There's a difference between effective treatments and cures. I'm actually doubtful that 'cure' is a professional word, though someone here can probably clear that up. Antidepressants, for instance, don't cure depressive disorders, but they're scientifically proven or 'evidence-based' treatments that alleviate symptoms of depression in some patients. King's College, and everyone I've spoken to or read, say no evidence-based treatment for DP has been discovered.

If you actually know that existing medications developed for psychiatric disorders are scientifically proven to cure depersonalization, but the world is unaware because the studies are limited to three months, you should go to the press. That's not to say whoever you share this news with will care about mental health disorders.

I'm not a fan of the word 'cure' in this context, and I'm willing to stop using it at this point in the post. The reason many cancers are successfully treated into total remission is because evidence-based treatments exist for the cancers, not because of the sheer number of cancers that exist. Misleading, risky, and ineffective treatments have resulted in many cancer patients dying.

I sincerely hope your psychiatrist didn't say that.

Why should I see someone who is really really good and expensive, if only a limited amount of psych meds exist, which can be prescribed to me by what you might consider a mundane psychiatrist, and none of them are scientifically proven to successfully treat DP?

There's no way I'm going to take a psych med for a year that demonstrates no positive effect, or that I'll dedicate energy to a DP guru.

I'm not trying to harass you or anything like that. I've just noticed that your point of view is very different from mine, and I'm trying to see if you can teach me something I don't know so that your point of view might make sense to me.

I am gonna take a week off this argument, freshen the head, i'm stressed out, so not easy to talk I realise lol I honestly think we will always have a different opinion on this but i'll try clear up what i've explained in better english when i'm not stimulated on cortisol and adrenaline.

I'm not an expert and most these aren't my theories, i'm repeating information. Making it free for people who haven't spent what I have to meet these people, I don't come here looking for answers anymore as I have people managing my case.

Cure thing I don't really get, i know many people who cured DP with meds so i just can't grasp where you are coming from.

https://www.reddit.com/r/dpdr/comments/2wj5af
(PS I tried this med and made my adrenaline spike you'll see how that ties into how it's wrong for me at the end.)

Okay this is my version of cured, this is 20 medications tried before he got one that worked fast and stopped DP, then he never had to take the med again. If that's not cured, we aren't on the same page.

Your interpretation of "not found an evidence-based treatment for DP" we will never agree on? As everything I've learnt about DP from seeing these specialist who have people in full remission come from the opinion that it is a symptom of a disorder, treat the cause of disorder and DP goes away, so treating DP in trials fail in the sense it's treating 30 people with 30 disorders for a symptom.

I'm tired but i'm gonna try and break this into some type of thing for us to understand where each other is coming from.

A ) "There is no cure for DP" ie no evidence-based - okay I accept that in one sense, there is NO ONE TABLET that cures DP, that can pass trials. However my A is only relevant when you factor in B.

B ) DP can be cured with medication - this is the part where we have a block/difference. You think one contradicts the other or do you not believe any of the thousands of people who couldn't solve DP for years and got out of it super quick with medication? (please explain)

Example B:

https://www.bjmp.org/content/25-years-hallucinogen-persisting-perception-disorder-diagnostic-challenge

NO evidence-based trails for HPPD are successful, some people it goes away, some find remission in Keppra it's really limited so easier to get into but comes with DP so not off topic.

So again 'A' is true as no trial for HPPD with cure is mentioned anywhere i've found. However there is in DP and HPPD people in 1 on 1 and in the trial group who do respond. It is not saying it can't be cured with medication, this is where I think the break down is.

Yes no evidence-based that have found a group of people all with HPPD that have big enough percentage to say we have medication for this. You'd put no "evidence-based treatment" in here.

But B is also true. Case above the guy cures (by cure I usually mean 95% remission and looking at his list i'd say officially cured maybe not, but having had HPPD I know. I use to have all them from something totally not how i got DP, i got HPPD another way... a way that i didn't think was possible.

However, my HPPD went from pretty bad, (heard worse) to all the symptoms going away after 2 years. but i bet if i looked for the symptoms I could notice slight ones, the only example i have or noticed in a year is visual snow, if it's 6am sun hitting my bathroom window, that type intense light i've noticed it so light and thought nothing, like literally, i couldn't tell you the last time I could relate to HPPD, in my mind that's a gone, i'd not treat it as i have nothing to really treat.

This thread wasn't labeled DP or how to fix DP or anything like that, you can do it naturally under certain circumstances, especially if it's anxiety. I believe in both, it depends on the reason you have it and I didn't need HPPD medication.

The study shows however they can find things that work working case by case, in fact more so in the Reddit example. That's trial and error which I have big respect for. You can't cure any mental health with the same brush. Hence why we have so many antidepressants and such-forth.

It shows that fixing the thing that has no "evidence-based treatment" wasn't impossible, it's they took his case on and figured out HIS issue.

I have a top p doc and endocrinologist neurologist (St.Marys [Redacted]). My case is interesting, I've got diagnosed as HPA dysfunction with Cushings Syndrome (20 out of 1 million), not an anxiety disorder. After thousands in tests we found this,

http://imgur.com/2ypnz1H

(scroll down two pictures). SO far off the tests we are looking for a benign tumor in my body, already done 5 MRI scans, now they have to do my whole body.

5x over Cortisol is so abnormal and part of HPA dysfunction as a result for Cushings, HPA dysfunction has been shown in DP, therefore my chain goes

Cushings -> HPA changes in the brain from Cushings -> (add in all the other factors in play at the time's HPA changes too, which apparently I already had from long term depression and a long list of symptoms) -> DP. Or at least that's the theory of how we are approaching this.

But we know my HPA isn't working on paper and knew it from symptoms before I was ever seeing a Endocrinologist!

So mine is an endocrinology problem that's changed my mental health, first I actually need to fix my Endo before I stand a chance. I have DP symptoms, because Cushings causes adrenaline and cortisol to go off the chart as you can see, however to say I have an anxiety disorder would be getting this back to front. I have high Cortisol which is leading me into anxiety coming from my body function. This is a one of case, an example how DP is not an illness. Anxiety might cause it, but the cause of your anxiety and disfunction is vastly dependant on how you got the disorder, your body and mind.

If i never went to a doctor, i'd have DP for life hands down, now they know what they need to treat and said they are very confident and there is no longer a guessing game of what's going on in my case.

I'm tired this is all over the show, talk soon

EDIT: One thing is these meds i gathered were from remission stories (still taking medication feeling 100%) and cured stories (cured as in felt the way i use to but don't now need medication).

I think i found something you might be open to thinking about,

https://www.heretohelp.bc.ca/visions/medications-vol4/myths-about-antidepressants

you mentioned depression and cure
MYTH: Once on antidepressants, I'll be on them for life.
FACT: Not true. A general rule clinicians often use is that a person should be treated with antidepressants at least one-and-a-half times as long as the duration of the depressive episode before they can begin to be weaned off. Longer-term antidepressant usage is considered only for a smaller percentage of people who have two or more relapses of major depression.

 

[106473]

I honestly forgot, will reply once holiday season has passed! have a good one