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Discussion Starter · #1 ·
As a DPD sufferer since the year 2003, I am in my early 30's and unable to attain a meaningful interaction of any nature with others. I can only predict that the future holds more of this infinite lonesomeness for me. It cannot be denied that I may forever live my life unwillingly as a lone wolf. Are there other long-term DPD sufferers who are able to identify? As much as it may sadden me to learn of others feeling as I do, I am in dire need of a hint of consolation.
 

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I can relate! I've been like this since 2003 as well, and am in my mid 30's. Since the start it felt that I lost my connection to friendships. While I didn't necessarily lose friends, it certainly felt that way, (and familial connections). Lately I've been losing friends though and it's just ridiculous circumstances but it doesn't even effect me because I feel that I already lost everyone in 2003, including losing myself of course. I've made a few really great friends through the DP/DR community though.
 

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Discussion Starter · #3 ·
Thanks for writing. Over the years, I have certainly and predictably come across accounts of loneliness and estrangement, but never among long-term DPD sufferers. I could imagine they are out there, just like myself, only too indifferent and fed up to bother delving into it online, as I am for the most part. Of course, this loneliness is all-encompassing: I have never experienced a romantic relationship. It is simply unfathomable.

As you said, yes, there were times when I was not physically alone, but I was alone in essence regardless of my physical surroundings. When it all began, my few friends kept being there, god knows why, while no one noticed that I was long gone. Eventually, we parted ways. Later on, still god knows why, other people insisted on interacting with me, and I cooperated to an extent, because I could not explain that I am indifferent and derive no joy of this. It was all completely robotic on my side, and I was completely indifferent when we parted ways. I am physically alone again at the moment, which may change in the future, but as time moves on, these opportunities for forced interactions diminish.

So, what do you do when you flew the moon and back to try and recover from this hell and nothing changes? How can you digest the life you have lost? Honestly, I am sad and jealous of the others. I am a big music lover, and I keep watching my favorite musicians in action and just want to rip my hair out. So jealous.
 

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One thing I've found to hold to truth is that the fact that we experience and are bothered by the immense loneliness, that proves that we are in fact social beings and crave and dare I say NEED interaction to have any kind of quality of life.

I've also experienced the jealousy, and still do, especially when viewing social media like facebook. I actually deactivated mine recently and I gotta say that has helped however I'm left with a void of what to do with my time.

New people seem to make efforts to socialize with me but it's like I'm socially autistic especially when it comes to romance. I can hold up to small talk, and with DP naturally I can go deep with the right persons, but when it comes to flirtation and etc I visibly shut down.
 

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I started my journey in 1971. I knew the feelings of loneliness. Even relationships didn't bring me out of my loneliness.

I had a trauma at age 17 that changed my life. I developed a head tremor, I began to experience frequent blinding migraine

aura (which I did not know what they were), I had vestibular issues such as incessant popping and clicking in my ears.

About every 8 years after this trauma, I experienced a depressive episode that took

2 years out of my life. I suffered severe insomnia and weight loss of more than 15% of my body weight. I experienced every

horrid psychiatric symptom in the book, and no medical professional was able to explain my illness or alleviate my symptoms..

My illness dominated my existence. It factored into every decision I made as an adult.

At age 57, I found a case history in a British Neurological Journal that described my illness with every odd and unique symptom.

it said I was suffering from a rare epileptic syndrome which is difficult to diagnose and whose worst case scenario is when "the

post ictal psychosis segues into an affective disorder of major depression (or bipolar illness). I had my diagnosis.

From there, I sought appropriate treatment. I underwent an EEG and failed it poorly. My temporal lobe showed significant pathology

consistent with a history of epileptic seizure. My initial trauma revealed itself to be a powerful temporal lobe seizure preceded

by an epigastric/abdominal aura. I had experienced about 30 epileptic discharges during my temporal lobe seizure. When the seizures

ended, I would never be the same. At age 57, It was determined I was no longer experiencing focal temporal lobe seizures, so I underwent ECT

for the depression. After 2 weeks of ECT, I felt a fundamental shift in my mental health. It was as if my firmware had been returned

to default settings. It has been 7 years since my ECT. I had one brief minor episode of depression which was situational. I remain

medication free, after 25 years of SSRIs and anti-psychotics. I just completed the 47 mile bike endurance event of "The Storming of

Thunder Ridge" and I'm looking forward to next year, which is something I was unable to do from the ages of 17 to age 57. I feel a bit

guilty, because I know ECT is not the answer for everyone. I'm afraid not all prayers are going to be answered. I was no longer actively

hoping for an answer. I was just sort of googling around and stumbled on to it. It was one hell of a Eureka moment, I can tell you.

Good luck! (Thunder Ridge is 12 miles up from the James River on the Blue Ridge Parkway in Central Virginia. The river is at 600'

above sea level, and the ridge is at 3900' above sea level. That's 11 football fields up over 12 miles. The fun is in coming down the

back side. The views, as exhibited above, are panoramic!
 

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Can I ask what are your main symptoms to you both @withasigh @thoughtsonfire?
Blank Mind, Anhedonia, Numbness, Detachment from Friends/Family, Can't recognize self in the mirror/pictures/video, Feeling out of Body, Feels like the old me died and hasn't come back, Loss of motor skills, Very difficult to read/do math/etc, etc
 

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Discussion Starter · #9 · (Edited by Moderator)
One thing I've found to hold to truth is that the fact that we experience and are bothered by the immense loneliness, that proves that we are in fact social beings and crave and dare I say NEED interaction to have any kind of quality of life.

I've also experienced the jealousy, and still do, especially when viewing social media like facebook. I actually deactivated mine recently and I gotta say that has helped however I'm left with a void of what to do with my time.

New people seem to make efforts to socialize with me but it's like I'm socially autistic especially when it comes to romance. I can hold up to small talk, and with DP naturally I can go deep with the right persons, but when it comes to flirtation and etc I visibly shut down.
I agree that our difficulty to participate in social interactions and possibly our current lack of interest in them are not the result of an unsocial personality. I presume we were collectively more social in our pre-DP lives. Even after all these years, my family likes to conclude from my preference to refrain from social activity that I desire utter loneliness. In actuality, I find no joy in either loneliness or social activity. Both of these poles only cause distress for me. I was actually asked once whether I have autism.

I started my journey in 1971. I knew the feelings of loneliness. Even relationships didn't bring me out of my loneliness.

I had a trauma at age 17 that changed my life. I developed a head tremor, I began to experience frequent blinding migraine

aura (which I did not know what they were), I had vestibular issues such as incessant popping and clicking in my ears.

About every 8 years after this trauma, I experienced a depressive episode that took

2 years out of my life. I suffered severe insomnia and weight loss of more than 15% of my body weight. I experienced every

horrid psychiatric symptom in the book, and no medical professional was able to explain my illness or alleviate my symptoms..

My illness dominated my existence. It factored into every decision I made as an adult.

At age 57, I found a case history in a British Neurological Journal that described my illness with every odd and unique symptom.

it said I was suffering from a rare epileptic syndrome which is difficult to diagnose and whose worst case scenario is when "the

post ictal psychosis segues into an affective disorder of major depression (or bipolar illness). I had my diagnosis.

From there, I sought appropriate treatment. I underwent an EEG and failed it poorly. My temporal lobe showed significant pathology

consistent with a history of epileptic seizure. My initial trauma revealed itself to be a powerful temporal lobe seizure preceded

by an epigastric/abdominal aura. I had experienced about 30 epileptic discharges during my temporal lobe seizure. When the seizures

ended, I would never be the same. At age 57, It was determined I was no longer experiencing focal temporal lobe seizures, so I underwent ECT

for the depression. After 2 weeks of ECT, I felt a fundamental shift in my mental health. It was as if my firmware had been returned

to default settings. It has been 7 years since my ECT. I had one brief minor episode of depression which was situational. I remain

medication free, after 25 years of SSRIs and anti-psychotics. I just completed the 47 mile bike endurance event of "The Storming of

Thunder Ridge" and I'm looking forward to next year, which is something I was unable to do from the ages of 17 to age 57. I feel a bit

guilty, because I know ECT is not the answer for everyone. I'm afraid not all prayers are going to be answered. I was no longer actively

hoping for an answer. I was just sort of googling around and stumbled on to it. It was one hell of a Eureka moment, I can tell you.

Good luck! (Thunder Ridge is 12 miles up from the James River on the Blue Ridge Parkway in Central Virginia. The river is at 600'

above sea level, and the ridge is at 3900' above sea level. That's 11 football fields up over 12 miles. The fun is in coming down the

back side. The views, as exhibited above, are panoramic!
forestx5, I am so very sorry to learn of your 40-year battle with your own illness and with the medical system, a battle many of us have fought and still are. I am aware of temporal-lobe epilepsy resulting in dissociative symptoms, although since it is not considered a rare condition, your exact diagnosis may be different. It seems you are genuinely thriving and content, and I wholeheartedly commend you for your ability to recover from decades of psychiatric and physical struggles. May we all share a similar fate.

Can I ask what are your main symptoms to you both @withasigh @thoughtsonfire?
Your nickname is a perfect fit for this thread. Up until several years ago, I experienced both DP and DR: emotional numbness, anhedonia, heavy brain fog, loss of identity, detachment from my physical self and from my surroundings, depression, free-floating anxiety, and social anxiety. I am able to eliminate DR-related symptoms such as detachment from my physical self and from my surroundings and brain fog so long as I supplement with the amino acid theanine.
 

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The research paper said the syndrome was rare and difficult to diagnose, and I interpreted that almost as an excuse for not identifying the epileptic component/origin of the illness.

The fallout from my powerful seizure was a period of "psychosis" which segued into an episode of major depression and carved the pathway in my brain which would require me

to walk that same trail several more times in my life. I think the symptoms of major depression were easily identifiable. Insomnia, anxiety being the main symptoms. My focal temporal

seizures masqueraded as panic attacks. 25 years ago, I do not believe the association had been made between migraine aura and epilepsy. Now it has. My city now has a new epilepsy

center which also treats migraine. A British Research paper was released "migraine, the borderlands of epilepsy". So, it is a complicated scenario of epilepsy, depression, migraine

and focal temporal lobe seizures and dissociation, but unless you run an EEG you may not see the underlying epileptic component. My seizures weren't evident. I could stand next to someone

and have a seizure, and they would not notice it. My young daughter used to ask me "Daddy, where do you go when you do that?" I said I'm just daydreaming. Truth was, I didn't know.

I was actually seen by a neurologist about mid point in my illness and he identified my blind spots progressing into a glowing sawtooth wave, as migraine aura. But, he never offered to give me an EEG. If he had, he would have

seen my history of epileptic seizure embodied in the results as happened 20 years later when I ordered my own EEG knowing what to expect. I think the sequence of events during an epigastric/abdominal aura

are very unique and should have been easily identifiable by a general practitioner. When I saw the symptoms I experienced at age 17 on paper, exactly as I had experienced them in every detail, it blew my mind.

I thought "Jesus, this is what I have been trying to tell them for 40 years and this is exactly how I have been explaining it!" I read where 50% of refractory epilepsy requiring surgery began with epigastric/abdominal aura. It just goes to prove

how "retail" many physicians really are. If it's anything out of the ordinary, the are ill prepared to diagnose it. Well, we already know how lazy psychiatrists can be. When I found my case history and

related to my psychiatrist my belief that the origins of my illness were epileptic and I wanted an EEG, he said "Go ahead.... get one." As opposed to "let me order that for you." I think he was more concerned about

losing me as a customer. Which, he did. LOL Once you have been remanded to psychiatry, they like to think they have you for life. I was more than ready to say "so long".
 

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Discussion Starter · #11 ·
On the one hand, extremely rare illnesses are understandably only infrequently properly diagnosed; on the other, when a professional almost diagnoses a medical condition but eventually does nothing, this is purely criminal. If your past symptoms were all psychiatric in nature, it would be predictable for most professionals to diagnose you with a psychiatric condition, except you describe a cluster of symptoms, some clearly not psychiatric, and such misdiagnosis cannot be excused.

At the age of 17, I developed a rare autoimmune disease which disguised as ordinary dental negligence, only it naturally did not respond to common medical procedures, and my condition only aggravated. When I was diagnosed several months into the disease, the damage was already irreversible, and surgery was needed. This attests to the automaticity with which health professionals approach diagnosis, ignoring important aspects of the condition so an easy diagnosis can be given.
 

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I have DP/DR, severe depression, ADD and OCD and, perhaps understandably, have real trouble attributing cause to my self-destructive cognitions, beliefs and actions. Self-destructive in terms of keeping friendships going in this case.

I can totally empathize with the earlier posts about being around family& friends and yet feeling isolated and alone and I personally just want to get away. Some of it is having to pretend and agree that x or y is amazing when internally I care about nothing 95% of the time. But other aspects I feel are more DP/DR - feeling detached, lost and like I'm in dense mist. I don't know.

But, to the OP's point, I got DP/DR at 19 and am now 46 and I'm worse now than then I'm sorry to say. I'm basically a hermit even though I live in a bustling neighborhood of NYC. A true lone wolf. One that's really, really unwell and wants to be alone.

Sorry if this is depressing to hear, just remember that YMMV ¯\(ツ)

Pete
 
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