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Hi everyone, was wondering what peoples experiences are with depersonalization coming alongside vestibular dysfunction (e.g. dizziness, off-balance, vertigo, coordination)?

I have had depersonalization constantly for about 7 years now. Luckily it hasn't been all that bad, I had a massive dissociative episode in 2012 that required hospitalization, but since then have only had the DP at baseline for me. At baseline it is still present, but just a little bit in the background of everything. While I obviously have wanted it to go away completely, at baseline I am able to actually function pretty well and have a decent life.

About 3 months ago I entered a second major dissociative episode which I am currently still in despite my best efforts (mindfulness meditation, good sleep hygiene, trying to engage in life, etc.), I have even added something I have never done before which is trauma therapy (Internal Family Systems, EMDR) typically used to treat PTSD but also Dissociative Disorders, of which DP is categorized as. I do have alot of trauma from child abuse, and the way the DP developed in my life it seems that it truly is a dissociative defense mechanism my mind uses when exposed to severe and prolonged stress.

On to the topic at hand, during this second episode I have had all the hallmarks of the first DP episode that got me hospitalized:

- Feeling self and world as unreal, as if I'm living in a dream

-I can remember and access all my memories, but they do not feel like they are my own, rather they must have happened to someone else

-People and places who should feel familiar do not (My mother, apartment, etc.)

-Significant periods of confusion and disorientation, like I can't form coherent thoughts, like my brain feels like it is rotting in my skull. Yet I am still able to carry on conversations and basic tasks with no real cognitive impairment.

This time the universe decided to add some somatic symptoms to the mix just to f*ck with me:

- Chest pain, heart palpatations, tremors (all ruled out with cardiac testing that I got done just to be safe)

- Numbness of the face, hands, and feet. Generalized Weakness

-Feeling like I'm walking on shaky ground, or that I am falling through the ground

- Significant dizziness, feeling off-balance, gaze instability, blurred vision, tinnitus (ringing in ear)

- Feeling like my brain just can't interpret and process the sensory information it is receiving.

Alot of these could be psychiatric in nature, and the diagnostic testing so far would point me in that direction. It has been shown in studies that people with DPD have abnormal functioning in parts of the brain that process and encode incoming sensory information, without having any actual structural damage to the brain or sensory organs. In this way, DPD is not "just" psychiatric, but like most mental illness, has some very real neurological abnormalities as well.

The dizziness stuff has really been an issue for me on top of everything else, had an MRI of my inner ear done to check for tumors/lesions related to it. Still waiting on the results, though I expect they will be negative of any physical findings. The dizziness has been bad enough where I am presenting with actual vestibular imbalance measured on balance and eye movement testing. Whether this vestibular dysfunction is caused by a physical finding in the inner ear remains to be seen.

So ya, let me know what your experience with these somatic symptoms, especially dizziness in relation to DP is. I have hope that in the absence of finding anything physical, that these symptoms will gradually lower over time, just as the disorder did for me 7 years ago until it returns to its baseline.

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I feel I had vestibular dysfunction for a few decades following a powerful temporal lobe seizure. I would have ear popping and clicking as if my Eustachian tubes were clogged.
I would also have focal temporal lobe seizures which disrupted my ability to control my tongue and throat. I couldn't swallow. They lasted less than 2 minutes, but they were frightening.
I didn't know what any of this was at the time. (age 17) I didn't have the EEG that revealed the epileptic origins of my symptoms until I was 57 years of age. What I did learn in regards to
my vestibular issues was that it was likely that the popping and clicking in my ears was audible with special instrumentation. What was probably happening was that aberrant
electrical signals in my brain due to epileptic activity were causing my inner ear to spasm, thus causing mechanical movement of my ear drum and hence the popping and clicking.
It wasn't as if the popping and clicking was just an interpretation of a neurological signal. It was real and audible. I never had this theory verified. By the time I gained this knowledge, the
symptoms had become rather mild. The condition is said to be rare. I had these symptoms
for perhaps 2 decades following the seizure at 17. My focal seizures stopped focusing on my mouth and throat and became simple absence seizures, and by my 50s, the focal seizures
had stopped entirely. My EEGs are still abnormal, however, indicating a history of epileptic seizure. My vestibular symptoms have lessened to the point I'm not sure I have them anymore.
It's a combination of adjusting to the symptoms and lessening of the symptoms to the point where it no longer makes a difference. It doesn't bother me as I don't notice it any more.
No medical person ever made any sense of my symptoms, which is why I often recommend an EEG if there is any doubt. An EEG can sort you out if epileptic activity is the cause of your
symptoms. I think I read where there is a 20% comorbidity between epilepsy and dissociative illness.. From my experience, there can also be an association between epilepsy, ocular migraine,
major depressive illness, and vestibular symptoms.
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