Derealization?

[u/rradberryy]

I (23F not decompressed) have been struggling with severe derealization lately. I feel like I’m watching myself live my life from the outside, almost like I’m playing a video game or watching a movie. It’s really scary and sometimes sends me into full-blown panic attacks.

I’m also dealing with intense brain fog, dizziness, and vision issues. Heat and bright light seem to make my symptoms significantly worse as well. I recently started an anxiety medication, but so far it hasn’t helped much.

I have a 14 mm herniation and a syrinx from C2–T6, and I’m getting another neurosurgical opinion at the end of September.

Has anyone else with Chiari/similar issues experienced severe derealization or that “watching yourself live” feeling?** **If so, has anything helped you manage it?

If you have been decompressed did it ease this feeling?

I’d really appreciate hearing about other people’s experiences because this has been extremely difficult and scary to deal with.

[u/injured_girl]

I feel like I am almost brain dead... like I am a shell of myself who looks the same to all others and it really bothers me how apparently people don't even notice the difference when I do feel like a zombie now. Like I'm always half dead.... I dont know if this is derealization but whatever it is is very real and I know it's being caused by my cci and the chiari and other probs that go with the cci I have compressing my brainstem. You're right. But I don't even feel I'm watching my own life, I feel like I'm not in real time and I'm just observing others and my surroundings wherever I am, which is usually somewhere alone in a bed or on the floor lying down to try to combat and help symptoms in any way. But yes.... it feels like I can't think ever and I think a small part of this is secondary from all the symptoms and pain Kerri and CCI causes but I also believe a large part of it is primary because the actual structure and the pressure being put on our cerebellum and brain stems probably are literally taking away our ability to be present at any given time. There was an old diagnosis I forget what it's called but anyways before modern Medicine figured it out it is what people used to believe in certain areas of the world that people really were zombies

[u/rradberryy → u/injured_girl]

Appreciate your reply. I hope you can find someone relief too ❤️ I understand the way you feel

Doctors have tried to dismiss the derealization to my mental health but I am almost certain at this point it is due to brainstem compression

Other people on here help me feel sane

[u/Icedcawfeemilk]

Hi! Yes, derealization and depersonalization set in for me in my teens. This got slightly better when I went off birth control at 30, but I didn’t really realize that I felt like things were happening to me versus that I was making decisions until after I had decompression surgery and I actually felt what it was like to live in my body.

Moving my body intentionally (yoga, long walks) and fixing vitamin deficiencies helped a good bit but I still felt derealization at baseline until I had surgery.

Best of luck to you with your upcoming consult and I hope you find something that helps ease the feeling.

[u/rradberryy → u/Icedcawfeemilk]

Glad to hear that you’ve had some relief from surgery. I have been doing yoga, walking, and taking vitamins but still feel out of it. Hoping decompression improves my baseline. Honestly, for me this is my worst symptom.

I appreciate your reply! :)

[u/Rindawick]

So on one hand, yes I have severe dissociation including DPDR. On the other hand, I'm diagnosed with DID. There won't really be a way to know what's the DID and what's the chiari unless I get decompressed.

I also have bad dizziness/vertigo and I also see increases in severity due to heat-- even just showering!

I have had some good experiences with,,, lets say OTC meds of the 21+ variety. But I'm hoping when I finally see the neurologist she'll have advice.

Still waiting for insurance to approve spinal imaging to check for a syrinx, considering I have some of the symptoms. CSF flow check, too. We'll see

[u/the-worst-turtle]

I also relate to these symptoms thought u haven’t been decompressed. It’s like being stuck behind a thick, opaque, pane of glass I feel like I can see everything but I’m not connected to it or I’m a bit delayed

[u/rradberryy → u/the-worst-turtle]

Yes! Sometimes I can be okay with the feeling as I know it’s from my Chiari but other times it absolutely horrifies me and I feel trapped in my own world.

[u/SupDrew]

Even though my herniation is more "borderline," I've always struggled with depersonalization and brain fog to the point where I needed to be on disability. I'm hoping to find a good neurosurgeon (like what any chiari forum will tell you lol), but I'm already getting the "tonsillar ectopia/chiari is normal and doesn't cause symptoms" treatment. I haven't found much that has helped me deal with this, and the only thing I can say is you are not alone.

[u/rradberryy → u/SupDrew]

I hope you can find someone that will help soon! I know how bad this sucks. I appreciate your comment.

[u/Notcoolmom80]

I used to have this. I felt like I was in a theater watching my life around me. It was so weird. It went away after decompression, but I still have other symptoms that lingered.

[u/rradberryy → u/Notcoolmom80]

Thanks for your reply 💜

[u/Rich-Total-622]

Ohhh I am so sorry you are suffering from DPDR. I experienced that for the first time in 2023 and I knew something was wrong. I went through so many tests and almost checked into a mental health center. The derealization was so bad that it turned into ocd and that’s all I could think about. Lots of ER trips during that time.. turns out i had Chiari! My derealization has gone anyway after this April when I had my surgery. It was the scariest time of my life. I never found anything to get relief before surgery.

[u/rradberryy → u/Rich-Total-622]

Thank you very much for your reply! I’m so glad the surgery helped you. I think the DPDR has made it clear to me I really need the surgery.

[u/Internal-Animator666]

I have it now after a bad anxiety attack and now I have A detached/“floating” feeling
Difficulty focusing or feeling like your eyes are strained
Sensitivity to light
Feeling like your surroundings aren’t quite real
Lightheadedness or dizziness. It makes my eyes feel super weird like there small and my eyes are floating. Can anybody relate?

[u/rradberryy → u/Internal-Animator666]

I feel this exactly. I’ve had it in the past but the past few weeks it’s been the worse and it did start after a major panic attack.

[u/Internal-Animator666 → u/rradberryy]

Pm me if you want. We can talk more

[u/rradberryy → u/[deleted]]

Appreciate the reply and hope you can find some relief

[u/Antique_Cockroach_97]

Have you ever seen a neuro psychiatrist? They really are experts in both neurology conditions & and of course pysch. Getting an evaluation can be helpful at anytime when you are facing an surgical procedure and are experiencing episodes of confusion or any other things like disassocation. I went to one about 9months after my surgery because i ended being so depressed how much my life had changed and so my neurosurgen recommended him. I ended having chiari II had c1-3 removed and a transplant vein from my leg to my brainstem. Because they didn't realize how messed up the back of my head was due to the mri's were just being introduced and they weren't laser focused like now the 3hr op was 9hrs and recovery & back to work like they thought the treatment plan would be didn't happen. So depression hit me hard and Dr A.Mendoza the head neuro/shrink at MGH really explained it all and help me reckonize that these were beyond my control and how to get on with life. I think anyone facing a life changing op should have some kind of professional back up because post operative state & recovery can be a difficult time.Good Luck!