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#1 DPCat

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Posted 23 February 2020 - 02:04 PM

Hey, I've been lurking here for a while now and I feel like it's time to tell my story.

Since I am not a native speaker, I apologize for any linguistic errors.

 

My story of struggling starts circa 2 years ago after i finished school.

Then i went on holidays for about 2 weeks and got a job right after. 4 days into the job, i got immense dizziness in the form of feeling faint.

The feeling of getting faint strangely always accured when i had to speak or listen to someone close up (but i wasn't nervous or anything, everybody was super nice) or watching TV, playing computer games.

Concerned about my health, i quit the job on day 4.

After weeks of struggling with the dizziness, i got very anxious and wasn't able to leave my house anymore.

Because of it getting worse and worse, I finally went into a hospital. They put me onto the internal medicine station, where they did some blood tests, neurologic checks and an MRI of my brain.

The doctors told me that everything was perfectly fine and that i just should do some sports.

I got released from the hospital after 3 days of not getting better and having extreme motion sickness.

 

After some more weeks of struggling from the dizziness passed, I reached out to a psychiatrist.

2 sessions into it, he diagnosed me with prodromal phase of schizophrenia and suggestet me to try a low dose of risperidone. (which i denied)

Arriving at home on the same day, i started googling about schizophrenia like crazy and i feared that i might get or already am psychotic and whatnot. You can imagine that my anxiety levels went through the roof.

At night, the moment I laid down in my bed, still  obsessing about the terrible thoughts of getting schizophrenic, it hit me like a truck from one moment to the other.

 

In this moment, I experienced DPDR for the first time. (Of course I didn't know I had DPDR back then).

I noticed something was very wrong, but i decided to go to sleep, with the hope of the weird feelings being vanished by daylight.

But suprise, they didn't. 

Waking up the next morning, i felt completely numb. I went to the bathroom and paniced about the things I did automatically. Turning on the heater, getting the towel, picking up my toothbrush and so on. 

I was immensly terrified. My vision, flat and blurry. (more on this later)

Still living with my family, I told my father to drive me to the psychiatry.

 

At the psychiatry, participating in several therapies for about 2 weeks, they diagnosed me with moderate depression and generalized anxiety disorder.

And I was negatively tested on schizophrenia for the time being.

They told me that I am probably having those issues because of a "getting an adult" crisis. But at this point, i never worried about the future, so for me the diagnose didn't really fit.

Oh, and also they put me on the lowest dose of sertralin.  I only took it for 2 days tough, because i had the worst side effects of it.

So, not wanting to take any drugs anymore and my father being super optimistic in telling me that doing some sports would surely cure me, I left the facility and started exercising for about a month or two.

 

I think now's the time to talk about my symptoms. As many of you do, I experience(d) literally every single symptom of DPDR. (I wont go into detail of each and every now, as i dont want to trigger anyone!)

For me personally, being depressed for years now (without even knowing), the numbness is the most acceptable part of the DPDR. Also I can handle the depersonalization really well, altough it's very scary sometimes. But being a little bit claustrophobic, derealization is hell on earth for me. Since DPDR kicked in, my vision always feels flat (2D), like everything sticks directly to my face. 

But as if that wasn't enough already, my eyesight got so much worse. Up to this day, everything seems blurry and fuzzy. It feels like i can see every single dot of light that hits my eyeballs and all those dots are like "circling" around. You could describe it like constantly seeing through fog.

Also, I am not able to drive in the night anymore. My nightvision turned to zero. That's probably why I am more anxious at night, everything looks even more unreal.

 

So, continuing with my story, having the mentioned problems with my eyesight, I went to an ophthalmologist.

Since I am wearing glasses and my dioptrin increased pretty much over the past years, I thought i had found the problem.

Long story short, I went to different ophthalmologists, they made some minor adjustments to my glasses and I got about 7 new, different pairs of glasses. Nothing changed.

Every single ophthalmologist told me that my vision was completely fine, even though my eyesight still felt very very bad.

Obviously I was pretty frustrated that changing my glasses was not the solution to my problem.

 

Anyway, going on and experiencing some more horrible weeks of not knowing how to deal with my condition and having increasing fear of myselfe going crazy (in believing everything was a dream),

I went to psychiatry again.

This time around, I spent 9 fully weeks there. My mindset was like "I aint going out there with me still experiencing these crazy things".

So again i participated in every therapy and got put on a new medication. (citalopram + trittico for sleeping)

Citalopram really helped me with my numbness and I experienced literally no side effects of using this drug.

But after taking Citalopram for about two weeks, my derealization became even worse. (i am not sure if it was just a coincident or because of the drug).

When i was walking, i consistantly felt like I was walking towards a wall. It pretty much felt like the feeling you get when you are moving around with your eyes closed and you know there are obstacles around - it makes your feets feel extremly uncomfortable.

In the times outside of the therapies, I started to resarch my symptoms by myself, because I felt that noone took them seriously.

Finally, having found out that i most probably suffer from DPDR, my psychiatry therapist told me that if i really had DPDR,  I would not even be approachable and I would just live in my head, not knowing whats going on around me.

 

Still taking Citalopram and having no improvement to my symptoms, those 9 weeks passed very quickly.

Even though I didn't like to have to get up so early and the therapies already repeating itself,

I still didn't want to leave the psychiatrie because it gave me a feeling of safety.

But since they had so many acute patients and they didn't see any progress in my mental state anymore, 

they (understandably) pretty much forced me to leave the hospital.

 

In those last 2 years until now, i 

  • went to a rehabitilation facility for depression (which was nice but they couldn't help me out either)
  • tried some sports for about a month or two
  • played lots of computer games 
  • changed my medication several times
  • was in therapy multiple times and saw no progress at all (one therapist even told me that he thinks DPDR is caused by watching Anime) LOL
  • moved from home to my own apartment

 

Today  I feel pretty exhausted and broken.

Most of the time I am feeling anxious and without even knowing why (maybe still scared because of the DPDR - which i try not to).

I've read all those nice recovery stories, telling us to not fight it and not obsess about it. I really try to follow this advice, and in my opinion, I am not fighting the DPDR anymore.

But how can you not obess with something that's literally always in your facial field?

 

So, thats pretty much it. One thing I'd like to ask you, are your vision problems also THAT bad? Like, i know I am repeating myselfe, but everything just looks so extremely foggy.

 

I want to thank you for reading this, kind stranger! Im with each and everyone of you, hang in there. icon_wink.gif

 

 

Because for some of you it might be interesting which supplements im currently taking:

  • Fishoil (Omega 3)
  • NAC
  • Calcium
  • Magnesium
  • Venlafaxin
  • Lamotrigin
  • Trittico

I also tried vitamine B supplements multiple times, but for me they increased my level of anxiety noticeably. Oh, and I am currently

on a gluten and (mostly) dairy free diet.

 

Note: For the next couple of days I will continue editing this post, adding details, make my story more readable and so on.



#2 AnnaGiulia

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Posted 23 February 2020 - 03:51 PM

@DPCat,

Thanks for sharing your story!

 


Finally, having found out that i most probably suffer from DPDR, my psychiatry therapist told me that if i really had DPDR,  I would not even be approachable and I would just live in my head, not knowing whats going on around me.

 

I had to read this line several times, I could not believe what this therapist told you. Sorry, but this is such ignorance from their part, it is just scandal!

You showed some admirable persistence in your search for causes of your current condition.

Wish you all the best, and see you around!

A.
 



#3 forestx5

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Posted 23 February 2020 - 06:01 PM

I read  your post, DPcat.  Podromoal schizophrenia?  Unapproachable and living entirely in your head?  Those sound like things you might expect to hear from a US public mental health "expert."

Vision is a complicated thing.  I'm not an opthalmologist or neurologist, but I believe an understanding of both disciplines is needed to explain vision.  The eye is like a camera lens.  The retina 

converts the light from an image to "neural" signals for processing in the brain.  That's where things get complicated.  Following a neurologic trauma as a teen, I lost the ability to see motion fluidly.

My vision was like a sequence of cut scenes, poorly spliced together.  It seemed like every change of my eyes focus was obvious to me.  There was nothing wrong with my eyes, that an 

ophthalmologist could find.  I'm sure the problem was in processing those "neural" signals.  This symptom went from pretty bad to much better over the course of a few  years, and after that I no longer

noticed any problem with my vision. (except for eye floaters and ocular migraine).  I contribute the improvement to brain plasticity.  I don't think you are suffering from a  degenerative condition.

That means time is on your side.  40 years after my trauma as a teen, I had an EEG which established I had a history of epileptic seizures.  In retrospect, I identified my teen trauma as the sequence

of epigastric/abdominal aura followed by powerful epileptic seizures.  Significant pathology was noted in my dominant temporal lobe.  I was told I was disabled.  But, for 40 years, I was a normal

successful person from a 3rd person viewpoint.  I just added the disability payment to my pension, and kept on truckin'.



#4 DPCat

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Posted 24 February 2020 - 11:16 AM

@AnnaGiulia,

Thank you so much for reading. It feels great being heard and understood.

 

About what my therapist told me, yup, i was pretty frightened when i found out that she and the doctors

were not very knowledgeable about this disease.

But unfortunately, as i already went to multiple therapists, they weren't the only one.

 

Also thank you for your kind words.

I wish you good luck on your path - im sending you positive vibes!

 

@forestx5,

Thank you too for reading my way too long story.

 

Im living in Europe, but yeah, "expert", i agree.

I am sorry for your trauma. When it is nighttime and there isnt much light, my vision also turns into cut scenes somehow.

Also i am struggling with focusing my eyes. When I try to fixate something with my eyes, my eyes constantly like try to focus some other points around the point i try to fixate.

 

Happy for you that it got better after time. But did you do anything specific for them to get better? I have also experienced ocular migraines multiple times. 

Sorry but im not sure what you mean by saying "I contribute the improvement to brain plasticity.".

When i was in psychiatry i really wanted them to do an EEG, but they denied doing it. But, thanks to you bringing it up again, i will try getting an EEG, just in case.

Thanks to you again, I wish you all the best!



#5 forestx5

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Posted 26 February 2020 - 01:12 AM

Brain plasticity is the characteristic of a young brain adapting to trauma. using its ability to modify connections and re-wire itself.  If a part of the brain is damaged,

another part of the brain may be able to assume the function of the damaged part.  In some instances, the brain can learn to fix itself.

Did I do anything specific to get better?  I endured several episodes of major depression over 40 years, so I had an average of 8 years in-between episodes.

During those periods, I played racquetball competitively.  I won open division tournaments.  I graduated at the top of my class from technical school.

I served honorably in the military.  I almost completed a 4 year degree in mathematics. (an episode of depression halted me). But my department professor thought so much

of me as a student, he offered to allow me to complete my degree from home.  I just couldn't do it.  I was barely able to function at work and it was too much.

In the final analysis, there was nothing I could do for myself to stop the cycle of depressive episodes.  In 2014, I underwent Electroconvulsive Therapy.

7 grand mal seizures were induced over a 2 week period and it caused a fundamental shift in my mental health which resolved all of my depressive symptoms.

Now I only experience an occasional mild migraine aura.  I have been symptom free and psychiatric medication free for the past 4 years with no adverse effects.

The EEG was key in allowing them to understand the severity of my illness, because you could not ascertain that severity from my behavior.

When they saw the results, they said "Oh!, you're disabled!".  Well, I had been disabled for 40 years and they hadn't noticed.



#6 DPCat

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Posted 26 February 2020 - 06:02 AM

Firstly, thanks for the good explanation!

 

It is incredibly admirable for me what you have accomplished in this time! Respect.

I have not worked anymore since the DPDR started, but i might try to get a half time job soon.

 

I'm so happy for you that Electroconvulsive Therapy helped you out!

So even more of a reason for me to do an EEG.

 

One personal question, of course you dont have to answer it: How did you feel when they told you that you were disabled? - Looking back on your life so far.

 

Thanks again for your kind and informativ reply. I really really appreciate it.

Have a good one,

DPCat



#7 forestx5

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Posted 26 February 2020 - 08:26 PM

I knew how badly I was hurt following the temporal lobe seizures at age 17.  I felt a part of me had died.  It was hard for me to understand why the severity of my condition

could not be recognized by doctors.  Actually, I did have an EEG about 4 months following my trauma.  My mother was a nurse's aid at the local hospital, but she had less

than a 10th grade education but earned her GED.  Since I was only 17, the neurologist did not consult with me on my EEG results.  He consulted with my mother and I got

the analysis 2nd hand.  My mother told me "your EEG results are normal, with one lead off."  Then she begged me not to need further medical attention (because my dad 

was upset about the expenses and that I should pray about it)  It took me 40 years to realize she had lied to me.  There is nothing normal about having a lead "off", and it would take me 4 decades to 

know that lead was to my dominant temporal lobe, and "off" meant I had pathology consistent with a history of epileptic seizures.  And the EEG I ordered for myself

verified my suspicions about my mother's dishonesty.  During my years of illness, I had some very dark periods.  My illness and my fear of it was with me every day and factored into

every decision I ever made.  I found it difficult to commit to relationships, as I knew I was flawed, maybe fatally so. I was afraid to drive very far from home.  I used to love the peace and solitude

of the forest, but after my seizures I feared being alone in the woods. ( I went into the woods anyway, and managed my fear.)  I sought interventions at least a half dozen times during that

40 year period, and I was always turned back out with no answers.  When I was told I was disabled, it came as a half hearted apology.  I had been triaged by modern medicine as they

didn't have time for me.  US neurology does have bigger fish to fry.  I've been in neurological waiting rooms, and I've seen the victims of brain trauma.  In effect, being told I was disabled 

and told to go to social security to receive benefits was their way of saying - this is how we handle cases like yours.  And I thought about it.  I could still be living in a half way house in

the slum neighborhood in which I was born, if my initial EEG results had been recognized for what they were at age 17.   As it is, I travelled the world and worked for several fortune 500 companies,

and met a lot of interesting people I would never have known.  But, it disappoints me greatly to see how little progress has been made over the past 40 years, in understanding brain illness, and

how content our health industries seem to be in frying the same fish over and over.



#8 DPCat

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Posted 27 February 2020 - 07:05 AM

How did the seizure express itself - what symptoms did you have right at that point? Did you pass out? The DPDR? And did you think of it being a seizure back then?

Wow, sorry but that's so inhumane to put money above your health, in addition to your mother lying to you of course. But no offense, I am not by any means allowed to judge someone I dont know.

Im really happy having a good health system here in Austria, getting most of the treatments for free.

I am very afraid of driving very far from home too - even tough i don't really know why.

You should be insanely proud of yourselfe what you have accomplished in your 40 year period - you are an example to look up at.

 

That's a horrible way of handling such an illness - welcome to the US i guess.

I guess that was blessing in disguise, looking back from this point of view now.

Yeah that's truly disappointing - and I even think that the US is a lot further in researching this area than the Europeans.

 

I apologize asking so many questions - but after your Electroconvulsive Therapy and considering your current state,

do you think you still suffer from the consequences of the seizure(s)? Is there something that hinders you nowdays?

 

Thanks again for your reply. Looking forward to hearing from you soon.

Have a great weekend,

DPCat



#9 forestx5

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Posted 27 February 2020 - 08:16 AM

I've told this story before, so I apologize to any who are tired of hearing it. lol

By age 17, I had experience with alcohol.  I used to save my 9th grade lunch  money with my friends and we would get a drunk on the avenue to

go into the bar and buy each of us a 6-pak.  The drunks were happy to accommodate us and welcome us into their fraternity.

So cannabis came around and I gave it some thought.  Everyone was smoking it, so there was peer pressure.  I took a few hits on several

occasions but never felt any effect.  Then one unseasonable warm December evening in 1971, I decided to go all in with several friends 

sitting on the church steps of our corner hangout.  I aggressively took about 8 hits from a couple of joints being passed around.

A few minutes later, I was daydreaming on the steps when I felt a painful jab and odd movement of my stomach.  I stood up to investigate

what may have happened, and it was as if the jab to my abdomen had punctured a hot air balloon.  A hot smoky sensation rose up from my

abdomen into my chest.  It made my heart go from 60 to 240 beats per minute in about 2 seconds.  The rising sensation was accompanied by

a powerful sense of impending doom.  I wouldn't know what it was for 40 years, but I was experiencing something the Euros call "epigastric aura",

also known as abdominal aura in the USA.  It is a podromal seizure that foretells of an impending temporal lobe seizure.  It begins at the base

of the Vagus nerve in the abdomen, (often with a painful jab and movement of the stomach). As it slowly rises up the nerve to the brain,  it is accompanied by

the sensation that something very bad is about to happen.  At the time, it occurred to me that I had just smoked the cannabis, and this must be "the rush"/

I consoled myself that it would pass.  It only got worse.  A lot worse.  When the sensation reached my head, one half (the left side) of my head went cold and numb.

My brain decided it would divide itself into two hemispheres, right down the middle (corpus callosum).  I got a tingling sensation in the left front of my head.

A mass of tingles about half the size of a golf ball gathered there, and slowly crawled (Jacksonian marched) to the left rear of my head.  Meantime, my vision had turned to a slide

show, with more time in-between each slide.  I was fighting for consciousness.  It was like being psychicly waterboarded.  I was drowning and gasping

for consciousness.  When the tingling mass stopped, that area of my brain began to tense.  The tension increased for 4 or 5 seconds, then it exploded and 

discharged.  The discharge shocked my mind, and caused my vision to warp.  It was as if I were suddenly looking through binoculars from the wrong end.

Whatever was in my focus zoomed far away and became very small at the end of a long tunnel.  This lasted only a second or two, but then the tensing began again.

I was trapped in the cycle of tensing, discharge, zooming vision for about 3 minutes.  I was in a horror show.  When it concluded, I would never be the same.

40 years later, when I solved the riddle of this experience, I understood the epigastric introduction to temporal lobe seizure.  The tensing was the polarization of

my brain neurons, like two plates of a capacitor.  Once they had charged significantly, they arced over and discharged.  Those were epileptic discharges.

The hallucinations I discovered have a name: "dolly zoom vision", named after a cinematic effect where a camera is placed on a dolly and races toward or away

from the subject being filmed.  When I found the case history in a British medical journal that matched my own in every odd and minute detail, the author stated

the worst case scenario of this rare epileptic syndrome is when the post ictal psychosis segues into an affective disorder of major or bipolar depression.

I realized I had been the worst case scenario.  For about 5 or 6 months following those seizures, I was severely ill.  I developed a head tremor.  I did not sleep

for 2 full weeks following the event.  I experienced something I would later learn was called "exploding head syndrome".  Google that.   I began to experience

intense and blinding ocular migraine aura.  I was agoraphobic.  I had  horrible anxiety.  Those months would serve as the template for 4 additional episodes

of major depression.  I read a description of how this works....it is as if a pathway has been created in the brain and you will be required to walk it again an

average of 4 or 5 times in your life.  If I had known this at 17, I would have killed myself then and there.  Each of  those episodes was an epic struggle for 

survival.  I would lose over 30 lbs, have horrible anxiety and not be able to sleep for weeks on end.  The combination of anxiety and insomnia multiples the risk

of suicide by a factor of 10, in major depression.  It is a killer combination.  I survived basically, because I'm a coward at heart.  I was too afraid to cross the veil

of death. There is very little research into this type of phenomena.  I think medical science is uncomfortable dealing with this stuff.  I wonder if I didn't trip some kind

of self destruct mechanism.  Those seizures were meant to kill or disable me.  Why?  If I had been an animal in the wild, I would not have survived following those

seizures.  I could barely care for myself during the worst periods of my depressions.  And, Dp/Dr was a component of my post ictal psychosis.  It took a few years

for my vision to recover completely.  The damage to my temporal lobe made it difficult to resonate with my mirror's image, which is a tell for the diagnosis of Dp.

Researchers say that if you have a soul, it resides in the temporal lobe of your brain.  They eye is the window to the soul.  When you damage your temporal lobe,

you damage your soul.  When you look into the mirror and into your own eyes, and you can barely recognize yourself, it's due to the clouds of Dp.

So, did the ECT restore me completely?  No.  Damage has been done.  My EEGs continue to show the history of epileptic seizure.  I still have the occasional migraine aura, 

but they are much milder and less threatening because I understand and no longer fear them.  But, the depression, and anxiety and all associated symptoms such 

as focal temporal lobe seizures, racing thoughts, unwanted and intrusive thoughts, etc., etc.  are gone.  Following the ECT, I felt a fundamental shift in my mental health.  I like to think my brain

processes were restored to factory defaults. It was all just a brief interruption in my life, from the age of 17 to 57.  It is an understatement to say I was thrilled to solve the riddle

of my life.  Dealing with a depressive illness does not get easier with age.  I was fairly sure I would end up taking my life at some point.  As it is, I had the opportunity to retire

early from my job, and I took it in part due to my health concerns.  Then, I was fortunate to receive disability income until I was eligible for social security, and my symptoms

caused me to be financially conservative so I have no real worries.  My daughter is enjoying college, which I prepaid in advance, and life is good.  I walk her dog every day

for exercise, and I practice my billiards.  Regional competition next week with a chance to win a free trip to Vegas to compete nationally.  Wish me luck!



#10 LizFerret

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Posted 03 March 2020 - 01:37 PM

...So, thats pretty much it. One thing I'd like to ask you, are your vision problems also THAT bad? Like, i know I am repeating myselfe, but everything just looks so extremely foggy...

I can say that my vision got much worse with DPDR but as my condition improves due to medication, my vision got more "manageable". I am hoping to get even better vision with time.

#11 DPCat

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Posted 03 March 2020 - 02:10 PM

...So, thats pretty much it. One thing I'd like to ask you, are your vision problems also THAT bad? Like, i know I am repeating myselfe, but everything just looks so extremely foggy...

I can say that my vision got much worse with DPDR but as my condition improves due to medication, my vision got more "manageable". I am hoping to get even better vision with time.

I wish you luck on that. So you are saying your current medication gives you some kind of relief?

Which medication do you use may I ask?







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