# Diagnosed after 20 years of struggle- many questions for you all



## Amykag (Nov 14, 2014)

I was recently diagnosed with Dp/Dr after 20 years of describing symptoms to countless doctors, neurology work ups, MRIs, cat scans...........and finally, through working with a very skilled therapist, heard the words "depersonalization disorder" for the first time. I started reading about it and it fit me exactly. I got the formal diagnosis by a psych. (Along with, of course, generalized anxiety disorder, panic disorder and lucky me: ADD). The psychiatrist suggested my DP symptoms could be due to seizures or from migraines. My PC and therapist think it is unlikely to be seizure activity due to how long I've dealt with this. My therapist thinks the trauma of my mother battling cancer and nearly dying when I was 11-13 was enough to cause DpDr. I do get migraines with and without aura including silent migraines so that could be part of it. I've started celexa and feel like my Dp symptoms are worse, like I am in a dream all day from the moment I wake up and just small windows where I might feel "normal" here and there. So..... My questions for you:
Does anyone have Dp due to seizures and how would I know if this is the case for me? 
Does anyone have Dp due to migraines? What is that like for you?
Has anyone had increased symptoms from celexa? 
Are there SSRIs that are better or worse for Dp symptoms? 
Thank you, I'm so glad to have found this website and feel so much less alone with all of this! I've felt like I was crazy most of my life!
Amy


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## Guest (Nov 14, 2014)

Hey Amy, Welcome, I'm not too sure about the seizures, however I know when i have a migraine by DP flies through the roof, so it could be a symptom of that, however the trauma is what really jumps out at me. A lot of people simply have DP as a symptom of anxiety, a defense mechanism if you will. However in some cases it can be a defense mechanism to trauma. Nearly Losing your mother at such a young age could have done it. I'm glad you finally found out what it was you were dealing with, didnt take me nearly as long but its always a struggle at first. As far as the meds go, it's simply how it works for that person and that medication, and we're not doctors so we try not to give advice on medication, and what will work and what wont. I would really like to hear updates as you find out more about what the root cause of this may be if they think it's not the trauma. Again Welcome! 

Jeff


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## Guest (Nov 14, 2014)

Amykag said:


> I was recently diagnosed with Dp/Dr after 20 years of describing symptoms to countless doctors, neurology work ups, MRIs, cat scans...........and finally, through working with a very skilled therapist, heard the words "depersonalization disorder" for the first time. I started reading about it and it fit me exactly. I got the formal diagnosis by a psych. (Along with, of course, generalized anxiety disorder, panic disorder and lucky me: ADD). The psychiatrist suggested my DP symptoms could be due to seizures or from migraines. My PC and therapist think it is unlikely to be seizure activity due to how long I've dealt with this. My therapist thinks the trauma of my mother battling cancer and nearly dying when I was 11-13 was enough to cause DpDr. I do get migraines with and without aura including silent migraines so that could be part of it. I've started celexa and feel like my Dp symptoms are worse, like I am in a dream all day from the moment I wake up and just small windows where I might feel "normal" here and there. So..... My questions for you:
> Does anyone have Dp due to seizures and how would I know if this is the case for me?
> Does anyone have Dp due to migraines? What is that like for you?
> Has anyone had increased symptoms from celexa?
> ...


Hi Amy, welcome to the board.

SSRI's appear to be typically ineffective unless augmenting another type of medication.

http://www.ncbi.nlm.nih.gov/pubmed/18088198
[URL=http://www.jwatch]http://www.jwatch.org/jp200408190000005/2004/08/19/ssri-ineffective-depersonalization-disorder[/URL]

When combined with lamotrigine: [URL=http://journals.lww.com/clinicalneuropharm/Abstract/2006/09000/Lamotrigine_as_an_Add_on_Treatment_for.2]http://journals.lww.com/clinicalneuropharm/Abstract/2006/09000/Lamotrigine_as_an_Add_on_Treatment_for.2.aspx[/URL]

I have migraines as well as DPD, I've had them for a number of years.

Did any of your testing indicate epilepsy? Can you request any further testing to rule it out?


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## 35467 (Dec 31, 2010)

Dp can come as a symptoms for many neurological disorders. But that you have had it for 20.years and you also have a history of anxiety indicates that it is depersonalisation disorder. Read some of the recovery stories and see if you relate to them.


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## Amykag (Nov 14, 2014)

Thanks, never had tests for epilepsy. I've seen several neurologists and Drs over the years and none have suggested to look into it. The psychiatrist who diagnosed me was the first to mention it. I believe he suggested it because the Dp/Dr symptoms can come on suddenly, like I will be fine and then, whoosh, I feel "weird", like I'm in a dream, like I'm not there.....sometimes it goes away quickly, sometimes it lasts part or all day, sometime I am fine for a long time.


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## Guest (Nov 15, 2014)

Amykag said:


> Thanks, never had tests for epilepsy. I've seen several neurologists and Drs over the years and none have suggested to look into it. The psychiatrist who diagnosed me was the first to mention it. I believe he suggested it because the Dp/Dr symptoms can come on suddenly, like I will be fine and then, whoosh, I feel "weird", like I'm in a dream, like I'm not there.....sometimes it goes away quickly, sometimes it lasts part or all day, sometime I am fine for a long time.


The way you describe the 'whoosh, I feel weird', is very much how being triggered can feel. Have you considered you're being triggered by something/s that brings out 'the protective mechanism' of DPD? It can happen very fast.


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## Guest (Nov 15, 2014)

Selig said:


> Hi Amy, welcome to the board.
> 
> SSRI's appear to be typically ineffective unless augmenting another type of medication.
> 
> ...


Hey Selig, no offence here, but that second link states that there is no known treatment for DPD. That's incorrect and I struggle to believe a bunch of researchers would ever say that. Different types of talk therapy have been used successfully for treatment for a long time. I've seen an eminent psychiatrist (weekly for over 2 years) and presently I see a psychologist (weekly 1 year) who together have over forty five years of experience specialising and treating people with dissociative disorders with many success stories. It's highly unlikely they'd still be working in the field of DD's still if their methods didn't work.

I'm wondering why a so called eminent expert such as Dr Mauricio Sierra say something like that. Quite simply, it's not true.

I smell a rat.


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## Guest (Nov 15, 2014)

Why would I take offense? I'm commenting on the efficacy of lamotrigine and didn't write the abstract.


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## Guest (Nov 15, 2014)

Selig said:


> Why would I take offense?


That's b/c of what I'm going to say 



Selig said:


> I'm commenting on the efficacy of lamotrigine and didn't write the abstract.


The problem is.. I know that was only an abstract.. but I gather that's a belief held by those researchers themselves (about there being 'no known treatment for DPD)'. But it's incorrect, so why should anyone believe anything else they say, about Lamotrigine or whatever?

I'm all for backing up seemingly bold statements such as this.. So here's a link to an international society who devote their huge website to research, training and thoughts on trauma and dissociation in case anyones interested:-

http://www.isst-d.org

And that's only one of many websites of people/s who've devoted their lives to treating DPD and other dissociative disorders.

I'm going to look into some of these researchers listed in that article and do some fishing.. Mauricio Sierra in particular. My b/s detector is going off!

I want the truth about treatment and recovery from dissociative disorders and I think we all deserve that.


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## tazi (Jan 8, 2009)

What reason would dr sierra have to bs? I'm just curious.


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## Guest (Nov 15, 2014)

He doesn't have any reason, he was well respected by his peers and did a lot of work on Depersonalization Disorder.

The wording of an abstract isn't going to change my opinion of him. There is technically no real treatment for Depersonalization Disorder, just a handful of studies and suggestions that may ameliorate symptoms.

I don't subscribe to the trauma theory on DPD either. I believe that past trauma is a common denominator in people and can either contribute to or cause its manifestation, but I've seen little to suggest trauma processing resolves it. I believe in acceptance and commitment therapy as well as cognitive behavioral therapy. I've had a traumatic past as well, and talk therapy has personally done very little for me because it does not change what has already been set in motion.


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## *Dreamer* (Feb 18, 2014)

Zed said:


> Hey Selig, no offence here, but that second link states that there is no known treatment for DPD. That's incorrect and I struggle to believe a bunch of researchers would ever say that. Different types of talk therapy have been used successfully for treatment for a long time. I've seen an eminent psychiatrist (weekly for over 2 years) and presently I see a psychologist (weekly 1 year) who together have over forty five years of experience specialising and treating people with dissociative disorders with many success stories. It's highly unlikely they'd still be working in the field of DD's still if their methods didn't work.
> 
> I'm wondering why a so called eminent expert such as Dr Mauricio Sierra say something like that. Quite simply, it's not true.
> 
> I smell a rat.


Hey Zed,
I think the confusion is, there really is no specific treatment or cure for DP/DR. People get better from different methods of treatment/medication/therapy, etc. The statement doesn't mean people don't get better, it just means, no doctor can open up a manual and look up "cure for DP." It isn't there.
For example, there is no cure for AIDS -- it is caused by the HIV virus -- researchers have been working since the 1980s to attempt to eliminate the virus -- that is 35+ years. There is no vaccine, there is no cure, but it can be managed -- ONE virus. It is no longer a guaranteed death sentence, but you LIVE WITH IT.

There is no cure for schizophrenia - it is a very complicated disorder, but there are many high functioning individuals with schizophrenia. There is no cure for ALS, or MS, or Parkinson's. Many cancers have a low survival rate.

Most illnesses can be controlled by medication, symptoms made less, pain relieved, life extended, quality of life improved, but in saying there is "no known cure" ... well that doesn't mean that one can't be found. With this whole Ebola crisis. That's been around for decades or more. There is no vaccine. Treatment is rehydration essesntially and a hope you support the patient soon enough -- there is no treatment, no SPECIFIC treatment. EDIT: There is no pill for Ebola, and no clear way to treat it save to assist a patient use his/her own immune system do the job. That was the only treatment every infected Westerner had. None of them had a guarantee they would live, even when they came home to the best care.

On the other hand, if you have strep throat and take antibiotics as prescribed, you can be cured. A doctor can diagnose the strep throat and then give you pretty much a tried and true treatment that will result in a complete cure. Also, we have vaccines for polio, tetanus, smallpox ... if given these vaccines an individual won't develop a particular miserable illness. A doctor KNOWS exactly what to give the patient.

Dr. Sierra would agree with any other reseracher on this. Either someone will say, there is no SPECIFIC, KNOWN, GUARANTEED "CURE" for DP/DR, but there are a number of options that seem to be effective.

I have said many times, I was treated by a founding member of the ISSMPD (now the ISST-D) http://www.isst-d.org -- Richard Lowenstein -- never spell his name correctly. He was working with trauma patients in LA, then moved on to Sheppard-Pratt. When I saw him one summer, he said, "we don't know what works with DP/DR. However, we have had some success with Klonopin." That was in 1987. I know the date as it was close to my 30th birthday, and I was planning to exit.

To this day, we still say, "We cannot cure the common cold." And that is a fact. One rides it out. One uses every remedy possible to make it through a bad cold or the flu. But there is no one thing, or combination of things that "cures" it, guaranteed.

I hope this makes sense.

I have had cancer. I am 4 years IN REMISSION. In theory I am indeed "cured." But NO doctor of mine will say that. They say, "Your risk of recurrence is X percent. I believe you will live a long life. If cancer returns, we can still treat it." I have a friend whose wife just passed away on 11/10. She fought cancer for SEVENTEEN YEARS. There was no cure for her. But chemo and loads of meds, and everything under the sun kept her alive for that long. As far as anyone was concerned she could have died in 2 years from diagnosis or ... no one knew. It was one day at a time.

But we can't give up hope that one day the brain will be far easier to understand, and that you will be able to go into a psychiatrist with DP/DR and the doctor may have a medication that actually makes it go away and never come back. I feel for young people here, that is a possiblity. I'm almost 56. I don't see that happening to me. But I'm not going to give up hope for any person here. And meantime, we all do what we feel is best.

Cheers,

Man, I have typed my hands off tonight. That's what misery, insomnia, and sadness will do.
Nite.
D


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## *Dreamer* (Feb 18, 2014)

Well, Selig expressed my POV in about 1/10th the space, LOL.


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## *Dreamer* (Feb 18, 2014)

> 4. Depersonalization Disorder: As holds true for the other dissociative disorders, no controlled studies have addressed the treatment of Depersonalization Disorder. Treatments currently used include a variety of models including cognitive and behavioral approaches, psychoanalysis, and psychopharmacology (as cited in Maldonado et al., 2002; Simeon et al., 2001). Clinical findings are inconsistent. The lack of empirical treatment studies on depersonalization adversely impacts the understanding and treatment of other dissociative disorders due to the fact that depersonalization is often a component of these disorders (Simeon et al., 2001). Depersonalization Disorder has been described as resistant to psychopharmacological and psychotherapeutic treatment interventions (Guralnik et al., 2001).


This is directly off of the ISST-D website. They say there is no specific treatment. It is unknown. Not enough is understood about DP/DR for anyone to take a direct approach. It is almost easier to treat bipolar. If you diagnose it properly and get someone on a mood stabilizer you have a more guaranteed approach to treatment. But better treatments for bipolar do not mean a cure. It is a life-long illness.

Also, the dates on these studies are ... expired. Anything that doesn't have a date of this year is old news.
I always look for any research dated the year I am in. Research is out of date in all sciences and other studies as soon as it comes out.


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## Guest (Nov 15, 2014)

Researchers telling us 'there's is no known treatment for DPD' is morally bankrupt. That's withholding information. Why would they do that? Well 2 possible reasons that come to mind are, to boost their egos and/or financial gain. There might be more reasons.. I'm all ears.

We're not playing games here. Many many people on this site are suffering terribly. So how do you think they'd feel knowing treatment options are being suppressed? And the ARE being suppressed by these researchers who say.. 'anything without a published empirical study is nonsense, or garbage, or untrue, or false, not to be believed etc etc'.. The self serving people researching this obviously do NOT have our best interests in mind.

In my view it's immoral to withhold information that can help people.

It's about time the people suffering from DPD were encouraged to explore the other avenues of treatment (which have been used for decades), b/c the science based research obviously has little to offer.

In Australia there's workplace legislation that states 'it's illegal to withhold information for carrying out a task from a co worker which can lead to death, injury or suffering' Or words to that effect anyway. I worked on commercial aircraft for years and the company I worked for has the best track record of passenger safety out of every airline in the world. One of the reasons for that was, we shared our knowledge and built on that bank of knowledge. Almost every time we did a job we did it better than the time before. If we were unsure of something, we could freely talk to our peers (well mostly anyway, there's always bound to be a bad apple somewhere). We worked 'out of the box' and didn't necessarily follow the books if we believed our methods were superior. We shared our knowledge and 'rewrote' the maintenance manuals often..

If the people researching this disorder truly cared about helping reduce the suffering of people with DPD, they'd be open and forthcoming with all the information gathered over the years from anybody who's had experience treating DPD. But that's obviously not the case is it? Not when you've got egos and pockets to fill at least.


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## Guest (Nov 15, 2014)

Zed said:


> Researchers telling us 'there's is no known treatment for DPD' is morally bankrupt. That's withholding information. Why would they do that? Well 2 possible reasons that come to mind are, to boost their egos and/or financial gain. There might be more reasons.. I'm all ears.
> 
> We're not playing games here. Many many people on this site are suffering terribly. So how do you think they'd feel knowing treatment options are being suppressed? And the ARE being suppressed by these researchers who say.. 'anything without a published empirical study is nonsense, or garbage, or untrue, or false, not to be believed etc etc'.. The self serving people researching this obviously do NOT have our best interests in mind.
> 
> ...


I understand your point, but I am confused about the withholding information commentary. When I read that line in the abstract, I interpreted it as "There is no known cure or uniform treatment that doesn't seem to be refractory to many conventional approaches in mental illnesses."

Maybe they should have worded it better, instead of treatment use 'cure'.


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## tazi (Jan 8, 2009)

I Kind of swing seligs way with the approach to therapy, I wonder of there are any demographics between success rates of physchodynamic therapt and.cbt/act for dp


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## Amykag (Nov 14, 2014)

Therapist and doctor say EMDR might be a useful therapy. Wonder what you all think of that or know about that.


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## Guest (Nov 15, 2014)

Amykag said:


> Therapist and doctor say EMDR might be a useful therapy. Wonder what you all think of that or know about that.


I've heard mixed reviews on EMDR. I did some research on it before when I was considering it. Anecdotally, I know of a few members who experienced relief with it.


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## *Dreamer* (Feb 18, 2014)

Amykag said:


> Does anyone have Dp due to seizures and how would I know if this is the case for me?
> Does anyone have Dp due to migraines? What is that like for you?
> Has anyone had increased symptoms from celexa?
> Are there SSRIs that are better or worse for Dp symptoms?
> ...


I want to respond to Zed, but first, Amy, I wanted to respond to you. You are indeed the new individual struggling with this. 20 years to a diagnosis! I'm sorry. That is truly unacceptable. Very unfortunate. I'm curious where do you live? What country? Or what area of any particular country -- the US?

1. In my case no seizures. At age 19/20 I had an EEG. Nothing was out of the ordinary. If I had the same today, it is unlikely anyone would see something abnormal in my EEG. I have never had a seizure of any kind and I am almost 56. If the theory that DP/DR are a form of seizure activity proved true in any case -- in the future I would hope that the machines used to diagnose seizures are more sensitive.

My sense is you do not have any seizure disorder.

2. Someone with migraines can experience DP in the aura, same with epilepsy. DP/DR would then be a sescondary symptom that is accompanied by the migraine. Someone however could have DP/DR AND migraines simply by chance.

3. I am on Celexa and have been for over a decade. It was the one SSRI that didn't make me jumpy or make any symptom worse. Howeveer, in theroy, someone could get the symptoms of DP/DR as a side effect -- either on an SSRI or withrawing from it. This is true of any side effect to any med. Some have side effects, some have none. For some reason, I have few side-effects to any medication good or bad.

4. I don't think the question is are SSRIs better or worse, but do SSRIs work for YOU. It is interesting to me how some folks here respond to say Paxil, another responds to Zoloft, another to an MAOI, etc. My meds that I have responded to are Klonpin, 6mg/day, Lamictal 200mg/day, Celexa 40mg/day. I may ultimately drop the Celexa, however I also have clinical depression. I don't want to change anything as I am functioining as best as I can the way things are.

My guess from what you've described, is you indeed have chronic anxiety and DP/DR. Thank God you finally got a diagnosis. It is now time to examine different approaches on how to treat this. Have a look around at posts here. And also, there are Links here with information, and names of books, etc. on the subject.

My short answer. I always type too much.
Take Care.


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## *Dreamer* (Feb 18, 2014)

Selig said:


> I understand your point, but I am confused about the withholding information commentary. When I read that line in the abstract, I interpreted it as "There is no known cure or uniform treatment that doesn't seem to be refractory to many conventional approaches in mental illnesses."
> 
> Maybe they should have worded it better, instead of treatment use 'cure'.


I'm with Selig on this. Perhaps it could have ben worded better. But indeed why would there be withholding of information?

I wrote at length that many illnesses:

1. Have no cure per se but

2. Can be treated, yes
3. With mental illness it takes time, trial and error to find something that works

4. For some getting better is rather simple, for others there doesn't seem to be an answer

A doctor or researcher who says, "We have a complete treatment plan for DP/DR which will pretty much guarantee success in eliminating DP/DR in most sufferers" -- well THAT statement is not true. Researches are fumbling around in the dark with DP/DR. And as I said, you can say the same for bipolar, depression, etc.,, etc.

Also, when writing a scientific paper you cannot claim that something works if it doesn't in the repeated trials, or seems hit and miss. And one has a certain protocol in writing reearch papers as well. They are essentially intended for other researchers or mental health care providers to read, not for lay people to read.

I was told in 1975, by my first psychiatrist, and by my mother who WAS a psychiatrist that DP/DR were not treatable at all. That did not help me in the least, particularly when my mother said that -- but that was part of her abusive nature. Over time, I found other doctors who had ideas on how to approach the DP/DR -- specifically addressing my anxiety issues.

In my case Klnopin (which a doctor saw had some effect -- less or more -- on other DP/DR patients he saw) helped. He was aware of this through his own study and reserach and suggested Klonopin MIGHT help me. He didn't say it WOULD. We pushed it to 6mg before I noticed something happening. Many don't go over 1mg and take it "as needed." It may very well be that such individuals are not getting relief as they haven't pushed it higher.

On the other hand, some may have negative side-effects and not tolerate it.

I have a number of friends with OCD. No one has ever said to them -- "X" is going to fix this. (Or use the word "cure"). A doctor will say ... and this has improved over time as OCD was thought to be rare and it isn't ... "You have OCD. This is what is happening to you. We don't clearly understand why people develop this, but here are some ways we can use to try to make you feel better and eliminate your symptoms."

No one, to the best of my knowledge, has ever stated there is a "cure" for OCD. One can improve greatly, or even try many treatments have see no change.

None of this is "withholding knownledge" -- I'm not sure what purpose that would serve at all. If a reseracher doesn't come up with a specific answer to a theroy, he/she isn't going to say he did.

I would say, there are treatment options available for DP/DR today, some more successful than others. I am one person, who is much older than a good number here, who had DP/DR since childhood, who wasn't diagnosesd until age 16 and at the time of my diagnosis had no acces to many medications that exist today. Klonopin was on the market at the time in 1975 -- what irony -- releasesd for use SPECIFICALLY as an anticonvulsant.

No doctor at the time would have thought to try that -- no one had studied it for that purpose. HENCE, my doctor was not lying or withholding information when he had NOTHING specific to help me. I saw him for both medications and therapy. I did not respond well to either.

I really want to research why my mother, and so many other doctors KNEW about DP/DR ... even back in the 1800s ... and fewer seem to know about it now ... they aren't getting taught in medical school about it (at least several of my psychiatric residents have said that when I asked them) As I said, a psychiatrist in 1975 diagnosed my DP/DR IMMEDIATELY. He said what it was. Then when I told my mother ... she thought it was "funny" (believe me she was crazy) ... but she KNEW what it was and had diagnosed it in many of *her *patients.

At that time, there was NO KNOWN treatment. Today, there ARE treatment optioins, more effective and some less effective.

I highly recommend Dr. Sierra's medical textbook -- it is the ONLY MEDICAL TEXTBOOK dedicated to DP/DR. It came out in 2009. He offers up many theories, the results of many studies ... the title says it all, "Depersonalization: A New Look At A Neglected Syndrome"

There are many good psychiatrists and mental health professionals out there and many bad ones.

And research into DP/DR has indeed fallen at the bottom of a pile of other serious disorders that are at the front of the line:
Schizophrenia, schizoaffective, bipolar, and clinical depression. NONE of those can be "cured." There are treatment approaches, some work better than others, and some don't work at all.

I volunteer at NAMI. I currently work with one woman who has schizoprhenia, and another who has bipolar. Both are doing as well as they can, and nowadays have many more tools to help them funciton. No one has told them they are cured, but there are cerain medications that have worked for MANY others (predictably) that have helped BOTH of them.

Someone can diagnose you with adult onset diabetes. There are some known treatment options that can help you even decreaes your sugar levels to take you out of that category -- some as simple as weight lossand exercise. But even then for some there is NO guarantee that a specific set of treatment options or medication or insulin therapy, etc. will CURE you. There are no clear answers either on the treatment of those whose pancreas has stopped working. We know a lot more, but juvenile onset diabetes has no cure and has more or less successful treatments. These are just facts.

Or maybe I missed the point, LOL.
I have edited a bunch of errors. Sorry.


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## Amykag (Nov 14, 2014)

Dreamer, I am currently in NY (not NYC). I've sought help for this in Massachusetts and Vermont over the past 20 years. My current doctor doubts seizures also. She said it would be unlikely that somewhere along the way someone didn't notice something off about me, like staring into space for a bit or zoning out and not responding or something. I really do think its trauma related. I did need to " leave my body" as a kid when my mom was sick. It was my way of coping. As far as meds, I've had significant negative side effects to zoloft, klonopin, celexa. The only thing helpful so far has been xanax. I've taken it for panic attacks or high anxiety but have found that if I also feel "weird" it just doesn't bother me. The dream state is there but I don't freak out about it. It doesn't make it go away, it just makes me not care that it is there.


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## Guest (Nov 18, 2014)

Amykag said:


> Therapist and doctor say EMDR might be a useful therapy. Wonder what you all think of that or know about that.


Amy.. I've heard mixed reports about EMDR and hypnosis too when it comes to treating people with DPD and trauma. Seems to work for some and not so well for others.. At the end of the day, if EMDR's something you're able to try, it might be worth a shot. You haven't got a lot to loose trying out different approaches.


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## Guest (Nov 18, 2014)

Selig said:


> I understand your point, but I am confused about the withholding information commentary. When I read that line in the abstract, I interpreted it as "There is no known cure or uniform treatment that doesn't seem to be refractory to many conventional approaches in mental illnesses."
> 
> Maybe they should have worded it better, instead of treatment use 'cure'.


Yes it could have been worded better..

What I mean by withholding information is quite simple really.. Here's an example.. Most of us here, see doctors, GP's, psychiatrists, or other types of specialists along the way. Usually the GP is the first stop. Anxiety is a big one with dissociative disorders. You'd struggle to find a GP who recommends trying any of the multitude of natural ways to try and counter the anxiety.. the list of methods to try is almost endless.. homeopathy, naturopathy, meditation, acupuncture, herbal teas, massage, osteopathy, acupressure, kinesiology, Chinese medicine, yadda yadda yadda&#8230; Instead usually the first thing they do is pull out the prescription pad and write up a script for anti anxiety meds. Correct? Why take that route first? Why not try the natural ways of combatting anxiety first, the ones without the horrible side effects and aren't addictive?

Not only are the natural methods actively dismissed by the medical community, they'll also do their best to discourage there use, by saying things like, they're not proven, they're fraught with possible dangerous side effects, they're a waste of time and money, they don't work, they'll make you worse, it's pseudo science, they're garbage.. and the list goes on...

This doesn't just apply to anxiety either.. it's right across the board. They withhold the other methods of getting better.

You can't tell me it's b/c these methods aren't 'proven'.. Why don't they give US the choice instead of keeping people in the dark? Where are the choices here? For people who don't know any better, they can easily think.. there are no choices. That's not fair.

I would have thought the medical community is about helping people get better.. but that doesn't always seem to be the case. Often it's about protecting their own turf, and what better way to protect your won turf than actively dismiss and discourage anything that's not scientifically 'proven'.. even if it's quite safe and has worked for millions of people in the past (Chinese medicine for example).


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## Guest (Nov 18, 2014)

*Dreamer* said:


> Hey Zed,
> I think the confusion is, there really is no specific treatment or cure for DP/DR. People get better from different methods of treatment/medication/therapy, etc. The statement doesn't mean people don't get better, it just means, no doctor can open up a manual and look up "cure for DP." It isn't there.
> For example, there is no cure for AIDS -- it is caused by the HIV virus -- researchers have been working since the 1980s to attempt to eliminate the virus -- that is 35+ years. There is no vaccine, there is no cure, but it can be managed -- ONE virus. It is no longer a guaranteed death sentence, but you LIVE WITH IT.
> 
> ...


Dreamer.. Yeah.. the Doctors open up their manual and see there is no cure for dpd, or even any proven treatments for dpd. But I don't believe that, do you? Please don't go down this path of what 'proven' is. It's a fact that there're tons of different ways to look after our health, mental health or physical health, that different cultures have used for aeons with success that haven't been proven by science based research. Sure, there're some sharks out there.. word of mouth is very powerful, so is the internet when you wanna fish out the scammers or where you want to find something that's worked for others.

There's a whole other world of healing out there that hasn't been researched by science&#8230; but that does that mean it doesn't work? Of course not, that'd be a ridiculous thing to say. But that's what we hear from the medical community and particularly from our doctors who are usually the first point of contact when things get too much.

I'd encourage you (and everyone here) to have a read through some of the D.I.D. forums and then tell me healing isn't possible. If people can heal from D.I.D. then people can heal from DPD. There's not a great deal of difference between what someone with D.I.D. experiences to that of someone with DPD. D.I.D.'s more complex, but many of the symptoms are very similar.

I've been on D.I.D. forums for years.. I've witnessed the incredible amount of healing from some of most damaged and hurt people you could ever meet. And one thing I can say is&#8230; ALL those people have used some kind of talk therapy as the primary tool for recovery from their trauma. Every single one of them! And every single one of those people worked hard at finding the right therapist and rarely did the first therapist they come across work for them. They never gave up! And all those people experimented with a multitude of ways to help themselves. There's definitely a divide in those communities when it comes to pharmaceutical meds and natural meds and there's a lot of respect for either method. You won't find people actively dismissing either methods, or indeed discouraging different methods as you see on this forum. There's a hell of a lot of healing going on with a lot of these people. They talk, they share openly, they're not closed off to different methods of looking after their health and the elders are well respected. There's usually therapists with lived experiences too who share an incredible amount of support and wisdom, and what better way to walk that journey of healing, than to walk alongside someone who's healed? Instead.. all too often here, we get discouraged to look around and see what's worked for others b/c science hasn't ticked it off as viable. That would never happen on the 2 D.I.D. forums I've been on for years.

Just looking through some of Dr Sierra's research on dissociative disorders. I'm struggling to find anything that's not based on heavy psyche medication. Maybe I'm just looking in the wrong place? And nothing's conclusive. That's what our doctors hear, and pass on this to their patients. Nothing's conclusive, doesn't look good for any sort of healing&#8230; that's totally ignoring what's really going on out there.

I hope the researchers keep researching. I do. Why would I not want that? At the end of the day it gives us more choices, and I agree some of the research is invaluable if you want to stay alive with some of the life threatening illnesses such as cancer or AIDS, but they sure haven't got much invaluable information to help people with dissociative disorders heal. And that's what this forum is all about.

So don't cut your nose off despite your face. If it's not 'proven' that doesn't mean it doesn't work.


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## *Dreamer* (Feb 18, 2014)

Amykag said:


> Dreamer, I am currently in NY (not NYC). I've sought help for this in Massachusetts and Vermont over the past 20 years. My current doctor doubts seizures also. She said it would be unlikely that somewhere along the way someone didn't notice something off about me, like staring into space for a bit or zoning out and not responding or something. I really do think its trauma related. I did need to " leave my body" as a kid when my mom was sick. It was my way of coping. As far as meds, I've had significant negative side effects to zoloft, klonopin, celexa. The only thing helpful so far has been xanax. I've taken it for panic attacks or high anxiety but have found that if I also feel "weird" it just doesn't bother me. The dream state is there but I don't freak out about it. It doesn't make it go away, it just makes me not care that it is there.


Wow. You would think in the 1990s in all three states you would have found someone, ONE PERSON? who would have known about DP. I really have to research why this is, and how to educate doctors. Infuriating.

Question: what were the diagnoses you got over those years. I swear, I may collect statements from people who have been misdiagnosed or undiagnosed for years. That would be a great research paper. I need a grant, LOL.

I don't know you and am not a doctor, but I do believe you have chronic DP/DR and obviously anxiety, and trauma in there. I'm sorry you've had bad luck with meds. I could suggest other anticonvulsants -- EVEN THOUGH I DON'T BELIEVE YOU HAVE ANY FORM OF EPILEPSY. I have had some help (beyond the Klonopin) with Lamictal. Also, I know someone whose DP/DR went away -- in about a year -- on Neurontin. He was on it for a while (several yeas) then weaned off -- no DP/DR at all now).

Now that you have a Dx and someone who believes you don't have seizures, you can finally take some other steps.

Best of Luck!


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## *Dreamer* (Feb 18, 2014)

Zed said:


> .
> 
> So don't cut your nose off despite your face. If it's not 'proven' that doesn't mean it doesn't work.


Well, I wouldn't do that! LOL.
I can't answer everything here. I have tendonitis and have to keep the typing down. Damn.

Believe me, in 40 years I have tried everything. Also, do know that until I was diagnosed for the first time -- in 1975 -- psychoanalysis was the main form of treatment, and psychodynamic theory. My mother was heavily influenced by that as was her supervising psychiatrist (ultimately mine -- who was always telling me "your mother isn't on trial here." -- I believe she told him I was a drug addict, OMG).

Then in the 1970s, the "hippie" generation was experimenting with drugs. Individuals would come into the ER and look as if they had schizoprhenia, or psychosis, but they weren't fitting the Dx 100%. There was a huge reaction to this. Drugs could mimic psychosis. And as advancement in brain research grew the medical model grew stronger. Also, the MPD crisis in the 1980s destroyed the credibility of Dissociative Disorder research. Satanic Ritual Abuse and hundreds of alters were proved to be false. People recanted, had to be treated for what therapists did to them, and a lot of doctors were sued. (Believe me, I was shocked to hear of doctors I had SEEN who were sued -- on excellent news programs). I nearly passed out.

1990s was "the decade of the brain" which focused on neurology. But since then, a holistic approach is coming about.

In my work with NAMI in the past 10 years in particular -- exercise, diet, yoga, meditation, DBT are offered sometimes FIRST in certain illnesses -- especially clinical depression. Also if you wish alternative therapies you can go to holistic doctors, chiropractic and massage even help. Animal companions (as someone mentioned here) have been seen as critical in helping many people -- autistic children, etc.

But for example, the FDA has approved accupuncture for pain relief -- for 15 years. But it is not used or rarely used. People get loaded up with meds. Why? Older doctors are stubborn.

New residents I have seen recommend many alternatives now - I've noticed a change in the passt 10 years. But I am aggressive in my own research. And I am in contact with mentally ill individuals almost every day. Treatment worldwide in psychiatry is not great -- and is pretty shitty most places and doesn't exist in other places.

A GP is not a good person to get psychiatric help from. A neurologist is going to look at it another way. A psychiatrist will look at it any number of ways. A social worker -- yet other ways.

No one is withholding information ... people are holding onto their own ideologies. There are some doctors (new) who still insist on psychoanalysis -- even for schizophrenia. THAT is ridiculous. They WON'T medicate psychotic patients. And all patients can refuse treatment.

If you read all of Dr.Sierra's book -- you will see the history of research into DP, from the late 1800s. And current research. You have to read the entire book.

I have had DBT -- which is based on Thich Nhat Hahn's Zen Buddhist principles. Best four months of group therapy I ever had.

*I ask of you, please don't tell me I haven't looked into all sorts of options. You don't know me. Perhaps you haven't read my website.*

I am reporting my experience from MANY sources, years of experience. Also, for example I didn't ever fear I had schizophrenia as my mother was a psychiatrist. She talked about her patients (which is unethical) to me as a kid! I knew for certain I didn't have it.

I am doing the best I can. And we must advocate for ourselves and others. Teach doctors. FIRE them, or thank them if they DO listen.

I have a friend who is a medical doctor -- trained in Western medicine who however has studied EASTERN medicine and alternative treatments. His performs accupunture for pain. Years ago, I was his practice pin-cushion. I asked him about alternatives to my DP/DR treatment. He said he had no success using his accupuncture or some other alternative therapies with his patients. None of them. He has been a doctor for ...30+ years and open to everything.

But also, after all of these years, I am also damned tired. There are some things I am convinced are not effective at all. They don't even make any sense. But I never close the door on anything.


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## *Dreamer* (Feb 18, 2014)

And in terms of "proof." I want to know, before I invest time and money, if a large number of people (in a research situation) have responded to various types of treatment. I come here to see what has worked for others. I have taken questionnaires for various doctors -- including Dr.Sierra. I have been a control subject at U. of Michigan in a depression study. I would participate in more studies, but one must be off meds, a certain age, fill a lot of criteria to make all the test subjects equal. It is very difficult to get healthy people to sign up to try medications or try anything. You need healthy controls as well as sick individuals to participate in ANY trial.

One trial involved accupressure. Did nothing for me (I was trying to help my anxiety), and little for most of the sick and well individuals (I got results of that study afterwards). It was disappointing to everyone, even those who conducted the study, and whatever grant money they got, well, they won't get more soon.

For any medication -- for any illness -- or any treatment, you want to know if it's useless, has helped ANYONE, helped some people, or has a pretty good track record of helping. My life is a lot shorter now. I'm almost 56. If I hadn't written down all of the treatments I've had over the years i would have long forgotten all of them.

Cheers.


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## eddy1886 (Oct 11, 2012)

Like Dreamer i am along term sufferer...43 now, Ive had DP since i was 18...I was undiagnosed until i found this website a few years back..I totally agree with everything Dreamer is saying but i will never dismiss alternative treatments...The fact is in my long experience with DP what works for one might not work for another...Some people have success with Therapy, some with CBT, some with medication and others with alternative remedies...For some people all they needed was to start exercising........

I for one have tried practically every treatment i could possibly think of......I tried Reki, Exercise, Diet, Different jobs, Different environments, CBT, various therapists, different shrinks, spiritual healers, sleeping longer, destressing my life, changing relationships, forcing myself to socialise when i didnt want to, isolating myself, trauma therapy, drinking, not drinking, sleeping with the tv on, vacations, cutting out caffeine, herbal medicines, new hobbies etc etc etc etc etc..............The list goes on and on..........

FACT! "NONE" of it worked!

The only thing that helped was an Anti Psychotic called Dolmatil (otherwise known as Sulpiride) After 6 years of DP and anxiety and at the age of 24 i was admitted to a psychiatric unit (around 1993) and prescribed what at the time was described as a "new" drug (i.e. Dolmatil) Within 2 days i was feeling better....Within a week i was back home and back working and functioning as i was before.....While this drug did not eliminate DP or cure it, it made my life bareable and took the edge of the DP completely....I have been taking this drug ever since as it is the only thing that has ever relieved my DP.....Now having said this in about the year 2002 i had a serious relationship breakup which totally knocked me for six....I got really sick again and was prescribed Citalopram (SSRI) In a few weeks i was feeling better than ever...I had discovered that the combination of Dolmatil and Citalopram made me as healthy as id felt since before DP ever started...Yet still my DP was still there in the background....In late 2012 i was doing pretty ok and decided to come off the SSRI (Citalopram) BIG MISTAKE...Within 4 weeks i was as ill as id ever been...Was put back on the Citalopram but this time it failed to do anything...So enter Venlafaxine...After a few weeks on Venlafaxine i started fuctioning again...And that is where i am now (Functioning but struggling) I must also say that all these years i have kept taking Dolmatil...The dose has slightly increased over the years but i will more than likely be takig it until i die now....

Moral of the story!

What has helped me over the years to cope and live is prescribed drugs (Nothing else worked) Also nothing has ever "Cured" my DP.....I have never ever felt 100% DP free...Its always been there and more than likely always will be....

What have i learned...I have learned that treating psychiatric illness is such a grey area that nobody truly knows what works except the individual who is suffering from the condition themselves....A top Irish psychiatrist recently told me that i need to basically pull my socks up and get on with life...I stood up to walk out the door and told him i thought psychiatry was a crock of shit to which he replied "Your probably right"

Its all basically trial and error and what works for one wont work for someone else.... "FACT"


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## Guest (Nov 26, 2014)

*Dreamer* said:


> Also, the MPD crisis in the 1980s destroyed the credibility of Dissociative Disorder research. Satanic Ritual Abuse and hundreds of alters were proved to be false. People recanted, had to be treated for what therapists did to them, and a lot of doctors were sued. (Believe me, I was shocked to hear of doctors I had SEEN who were sued -- on excellent news programs). I nearly passed out.


This is exactly what I'm talking about. It's obvious you know nothing about Satanic Ritual Abuse. If you did, you wouldn't say it was false. The fact that you say it's false makes me wonder, why would even enter a territory you know nothing about and try and brainwash people into believing it's all lies? In fact Ritual Abuse and indeed Satanic Ritual Abuse IS true and it happens all around the world.

Do some proper research please. One of biggest problems people with a background of RA and SRA face, is the brainwashed masses who believe it's all lies (based on ??). Mass media ain't gonna give you the truth here. Nor is wikipedia. Maybe you should listen to some of the survivors of SRA before you make your mind up, instead of listening to the garbage pushed by the perpetrators themselves&#8230;


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