Spinning, dizziness, affected equilibrium - bending or turning; somtimes bumping into a wall or doorpost (or my feet)?

Hello - No problems with flashing lights nor with noise, other than I have never liked such things, but since my injury and the prescribed medication (for so-called 'epilepsy', a diagnosis finally revisited and confirmed a mis-diagnosis), I do have a problem bending over, and specifically when I turn to lie on my bed, on my back. I feel as if I am going to 'fall off the planet', and clutch - irrationally - my bed. Of course I am not going to fall. I often feel like I'm walking on stilts, on very figh heels, or on balls. No pain, fatigue - just a distress of loss of bodily equilibrium. No seizures - just a sense that my control of my physical space might be compromised. Has been, since, 'diagnosed' as vestibular damage due to the bang 2.5 years ago. Was in a 'coma' 8 wks thereafter, leaving whatever damage to be corrected, dormant. Have since then removed self from wheelchair, walker, now do indoor cycling 2hrs daily, make myself walk in my passages; but still have trouble turning/lying on back and sometimes bending over. Am seeing a 'neuro-physiotherapist' twice a week - it definitely helps both gait and with confidence (just knowing that the problem is resolveable). Used to do road bicycling, driving, gardening, all the time. It is almost unbearably frustrating. But there is light. Anyone else have this what I consider to be an almost 'gratuitous mess', or like me, feel that they are being lazy and in some incongruous way self-indulgent? There is nothing to do with self-indulgence, I know that well. It is just a difficault run of and with inappropriate gauntlets.

With thanks.

3 Replies

  • If you are not using medication to treat the condition, it is important to pay attention to your movements. Avoid any sudden movements of the head.......when looking left or right turn your whole body.......and avoid swivelling your eyes. When lying down and turning over, I do it in small, gradual movements. It has taken me years to adapt although I still have a problem walking in a straight line.

  • You have done very well with your recovery so far so it is not surprising that there are residual symptoms. I have much the same symptoms with the room spinning when I lie down. You may find your balance gets worse when there is not so much light available e.g. at night?

    I eventually tracked my problems down to teaming issues between my left and right eye - where they both relay different messages back to the brain. Vision is an important part of our ability to balance. Because the brain is injured it can't process the information quick from both eyes compounding the problem. You can get your eyes tested by a specialist - not a standard high street optician.

    I would often stumble or take a step sideways as if someone had suddenly nudged me. This was down to damage to the inner ear - Labyrinthitus. This was like walking on marshmallows - very bouncy!.

    Both of the above symptoms are very common post head injury and can be masked by other symptoms early in the recovery

  • Yes it is horrid when this happens. Ask your doctor to check for BPPV which may be corrected with some simple physical treatment. Good luck for the future.

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