Looking for advice…

[Lipsty79]

My partner suffered a severe TBI back in May. He was in an induced coma for 3.5 weeks and in hospital for a total of 5.5 weeks before being discharged. The discharge felt very rushed and it took a long time for the therapy teams to visit. It feels like we’ve been left to our own devices and after calling the Headway helpline they said that this is actually good news as they wouldn’t have discharged him if he wasn’t well enough. We are no longer under any consultants and if we have any issues, we would need to go back to our GP. He is doing very well on the face of it but is finding cognitive functions challenging and has good and bad days which is obviously expected. His biggest issue outside of that seems to be with his head, when he walks he says he can ‘feel’ his head and that it feels ‘full’ which makes him feel like he’s going to fall over even though to watch him walk he doesn’t look off balance, just slower with more considered movements. He is sure it’s not vertigo as nothing is spinning, he can just feel ‘it’…whatever ‘it’ is. I just wondered if anyone had experienced similar symptoms and has any helpful words of advice! Thank you in advance.

[ShareeRose]

Hi Lipsty79. Your husband’s story is very similar to my thing(I can’t think of the word I want to use so I just put thing) . When I first went home, my biggest struggle was when walking I felt the rush of a headache and dizziness were making me very unbalanced. This I understand was concussion it has decreased over the last three months. I believe you should still be under the care of your neurosurgery department at the hospital so please check that with your surgeons secretary my first follow-up meeting was after 4 months so do check that as well and in the meantime write down any questions or symptoms that you and your husband is experiencing and take them to your follow-up meeting. I too have experienced feeling like I am left to it, but I had meeting with Social Worker who has explained everything that is going towards my support in the background and I am just about to see a Neurology Team for answers to some of my unexplained symptoms. He is doing super well. Your Support is invaluable, expect unexplained fatigue and cognitive issues but this community here has helped me a lot to understand. I hope you get the same best wishes Sharon.

[Lipsty79 in reply to ShareeRose]

Thank you, Sharon. It’s good to know that the feeling decreases over time. We have an ENT follow up but as he didn’t need surgery, he is no longer under a Consultant. I hope you continue to see improvements for yourself 😊 Best wishes, Kirsty

[Hidden]

Hi Lipsty, sounds like cranial tension to me. Had similar, it's not a brain issue it's cervical/ vestibular.

The other thing is that he only had the injury 3 months ago so many of the functional symptoms are still manifesting and will take a while to show up.

This is normal for TBI, believe me he is doing well and now you will have to be patient.

[Lipsty79 in reply to Hidden]

Thank you, pinkvision. We are learning that patience is key! 😊 Best wishes, Kirsty

[AngelLeBuff in reply to Lipsty79]

Hello Lipsty79! Believe me, patience is key! Take care of yourself too x

[TBI_Friday]

Hello Lipsty,

From reading your post it might be that he is experiencing some form of BPPV. This can happen when a hard enough force strikes the head and displaces the tiny crystals that sit deep within the inner ear that regulates the feeling of balance. I suffered from this and it can be resolved by epley manoeuvres. It might be worth testing this by getting him to sit down and tilt his head to look up for like 20 seconds, or tilt his head up and to the left or right and hold for 20 seconds to see if he then feels disoriented, if he does..then its likely to be bppv. Hope that helps.

[Lipsty79 in reply to TBI_Friday]

Thank you, TBI Friday. We have an ENT follow up as they saw something on the last MRI that they thought was going to be an issue. The Dr mentioned BPPV in the last appointment or possibly fluid in the inner ear. The next appt is a hearing test and ENT specialist so hopefully we will find out more then. We just did that little test and he did feel ‘strange’ so you might be on to something! Best wishes, Kirsty

[TBI_Friday]

I had fluid in my inner ear too, apparently CSF leaked out my ear for 9 days after my accident. It does clear up, as for BPPV stuff..its super easy to do the epley manoeuvre a few times a day, all it does is slowly nudge the crystals back to where they belong..you'll know if it's working because the eyes will quickly go left and right on the last stage of the manoeuvre. Good luck 🤞

[Hidden in reply to TBI_Friday]

Why don't you write a post about this. I did very similar exercises and it worked for me too. I keep posting about this, but no one seems to be bothered and no one tries any of these vestibular exercises. It's as if no one believes me or that when the people ask their GP's about it their GP's have never heard of vestibular therapy and their physios have never heard of it either.

My GP, neuropsychologist, and physio knew nothing about them, so I found demos of vestibular exercises on YouTube and just tried them and they worked.

[TBI_Friday in reply to Hidden]

Good idea, doesn't surprise me that a GP doesn't know about it, but quite surprised a neuro did know, anyway I'll make a post 💪

[Sifu]

yes me Hi I felt exactly the same after my TBI I was in hospital and induced for around the same time after my car accident when I had parked in a laybuy on the A55 to make a phone call Unfortunately a car travelling at 70mph + careered off into the lay-by and hit me from behind it will get better in time for your partner

Godbless x

[Lipsty79 in reply to Sifu]

It’s good to know it’s common for TBI’s. Take care of yourself x

[Cows4life]

totally understand what he means about his head feeling ‘full’ or ‘heavy’ it’s hard to describe buts it like what sounds like, similar to if you’ve done for a long walk or something and your legs feel heavy and tired you’re fine and you can still walk but there is this feeling to them, it’s like that in your head. However, it can be caused by things like fatigue or stress because of the situation or it’s just feeling you get and nothing can really do much till it subsides and it’s doesn’t feel so full anymore. Sorry if this doesn’t make much sense!🫣😆 tried to describe as best I could, but he’s not the only one and it’s hard afterwards but tell him he’s not alone and many understand or can sympathise with what he’s going through, with the mental and physical toll it’s takes but also the emotional, it’s an incredibly hard thing to overcome but everyday is new and he will be able to look back and see the amazing progress he’s made 😊 xx

[Lipsty79 in reply to Cows4life]

Thanks for your message, it sounds like exactly what he has and it did make sense ☺️ Take care x