Do you ever find that your body, thoughts and feel... - Headway

Headway

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Do you ever find that your body, thoughts and feelings are disconnected?

pinkvision profile image
8 Replies

I had this for years and recently found out what it is.

Interoceptive and exteroceptive lack of sensation. Common following trauma to the central nervous system by either physical means eg. brain injury or by mental nervous breakdown or medication that inhibits nerve function.

It's described as meta-cognitive dysfunction.

It's most noticeable when you close your eyes and relax. You lose your 'place' in space and time. Feels like spinning or tilting in any direction and that you are floating in air or space. You may have strange dreams when in bed, other worldly and surreal.

With your eyes open it feels like the space around you is changing shape. You can look at something and it seems as if it's out of proportion and can look as if it's a couple of inches away or a hundred meters away at the same time. This is called Alice in wonderland syndrome. Many small kids get this too because their brains are still learning and building a 'picture of reality' in their minds.

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pinkvision profile image
pinkvision
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8 Replies

mind.org.uk/information-sup...

Have a read x

pinkvision profile image
pinkvision in reply to

Hi, cheers had a look. Interesting. Mostly about psyhe issues. Wondering about damage caused by physical trauma to the brain / nerves, eg a contra coup with twist that breaks the neuron connections. Blood from a stroke that dissolves the myolene sheaths around the nerves etc.

in reply to pinkvision

UCL does a lot of neurology stuff… maybe have a look at their research x

ucl.ac.uk/ion/

Nackapan profile image
Nackapan

Yes I csn identify with this.I call it the 'goldfish bowl '

Only way I could describe it.

I got alot of blank expressions from various doctors though.

Not that I've seen one fir over a year.

I like explanations at least fir whars going on.

Very interesting thanks

pinkvision profile image
pinkvision in reply to Nackapan

We've communicated quite a lot over the years. Have you found anything at all that has brought a noticeable change to your BI?

Nackapan profile image
Nackapan in reply to pinkvision

Time . Cawthorne exercises.Trying not to multi task.

Avoiding artificial lights and bust environments

Nutrition vitamins??

Still awaiting neuro Opthalmologist appointment tk hopefully at least gey some explanation s

Have worked out I've a combination of post concussion symptoms from bad falls that I think worsened by old head injury concussion as a child.

And b12 deficiency symptoms

Both affecting v vision and nervous system

How about you?

pinkvision profile image
pinkvision in reply to Nackapan

I'm basically fixed. Visuospatial normal, only sensitive to long periods of sunlight, LED's and screens still drain energy and slow down cognition. Have got a 144Hz screen coming to try out and see if it makes a difference. All my memory, except language memory and 'rehearsed' memory is really good. Getting 1-2-1 sessions soon to try and fix those through the university I'm studying at.

Have had another huge break through lately. I did not realise my body senses both internal and external were imperceptable if I closed my eyes. Sounds weird but true. That's why I used to get strange experiences of floating in space and having surreal internal visual phenomena. I found a method that reconnected the sensory system through a mindfulness adaptation. The experience made the soles of my feet and palms of the hands pulsate when I went to bed with weird dreams, but then the sense of the body came back like a mosaic, as if certain nerves were reconnecting. Finally they all reconnected. My left arm has been weak and dysfunctional since the accident nearly four years ago, lately it's started to work again. My hand has 'been released' and now it just want to grip and move. It's a if the reconnection of the senses has reconnected my hand/brain functions. I'm totally gobsmacked, it's almost unbelievable how it has happened. I've had surgery that did nothing really, had physio that did absolutely nothing but this 'concentrating ' on keeping sensations in mind has really worked.

I've retrained all my cognitive and skills functions to a reasonably high level. Started a university course that was really hard initially, for reading and making sense in written form, verbal communication is not quite right but coming along. The strange thing is that I used the 'functional recovery' methods that are used in the US and Canada. I got nothing from the NHS in real terms who seemed to want me to take pharma at one point but I refused after hearing the effects of nerve 'numbing' medication.

I think it's important to 'have it in the mind' to 'believe that it can happen' and to work at it, to make it your life goal, day in day out. You become what you do, it's a true statement. Resilience and the will to keep trying, never give up.

I'm a very lucky boy, but I've worked hard and lived rehab every day for years. Just a few things to sort out now and that's it, job done, new life begins with every step of accomplishment along the way.

Nackapan profile image
Nackapan

Huge achievement. Well done.

I will never give up.

I've still hot loads to work out.

I've stayed off meds .offered 17 in total

Tried 3

Have regular b1e injections and vitamin and mineral supplements

I fo need kain killers sometimes but Beth much reduced noe.

Some things have no rhyme or reason.

2.5yrs in.

Still wear colour tinted gkasses from professor Evsns occasionally but they wernt a break through for me. Gkad of the 'third ' opinion of eye heath though.

You have worked very hard.

Take care and enjoy life

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