hi guys, for the past few weeks I’ve felt like I don’t care about anything, got no interest in life, family , friends, doing anything at all. I’m completely exhausted all the time. Headaches, anxiety, tearful etc.
I’m 5years post injury. Cognitive issues mainly, nothing physical. Had therapy, and I don’t feel like this all the time, but when it comes it floors me. Don’t know where to go for help
Well done for reaching out and sorry to hear you're feeling like this. Would you feel comfortable reaching out to Headway or your GP?
Hi, to be honest I wouldn’t know what to say. I dunno if I’ve done too much lately and it’s catching up with me or what. We’ve had lots of family and friends health issues for the past month and as you know, others issues can escalate your own can’t they.
Definitely. I've found my stress tolerance is so much lower now and it can very easily get overwhelmed. For me it's particularly when it coincides with other things like other ill health or hormones. But you still deserve to feel better than that. I'm sure you could start with a call to Headway (or email if you feel more comfortable, but perhaps a chat might be helpful?), ask to speak to one of their nurses and literally tell them what you've just said here and ask for advice. I've called them several times and started it with - 'please bear with me, I think I want reassurance as well as advice' or literally just, 'I'm not sure how to put this'. Takes me a good bit to build up to picking up the phone but they've always been very supportive.
Thank you so much, I think I will ring them. To get things off my chest if nothing else. Hope you have a good day, thanks again.
Good morning.Have you been tested for possible hormone dysfunction? The pituitary/endocrine system can be damaged after a Brian injury resulting in allsorts of symptoms. Your endocrine system does a massive job keeping you functioning, so if it's out of whack, even only slightly it can have really awful symptoms.
I've been suffering with extremely debilitating symptoms since my fall in 2018, and they come and go. Each year I've been spending more time feeling this way than not. I call my episodes 'Dead zones' because all my motivation, ability to think, complete the simplest of tasks is unbelievably difficult. I don't feel human, and feel as though im in a waking coma because I'm there but the dials been turned down to almost zero. I was told its depression each time I presented at my GP, but it's not that, I know depression and this feels much different. About 2 yrs ago my periods started to become unreliable, then heavy/painful. I googled TBI and perimenopause and found that my endochrine system could have been damaged.
I had my first appointment with endocrinology a few weeks bk. My blood work didn't show anything alarming, which I suspected as at the time of my appointment I wasn't fully in the 'zone', however I was prescribed progesterone to try to help with the heavy & painful periods and since taking it I've felt a lot better, I'm not pre injury but it's definitely helped, although I'm having to double my dose as some symptoms started to return. I recognise I'm in very early days of trying treatment but after feeling so bad with zero quality of life I'm chalking this as a win at the moment.
I'm not saying that this is what you're suffering, but it definitely needs looking into.
Hope you're okay
Much love, Tinks 🐈⬛ x
That’s definitely something I’m gonna speak to the gp about. I’m gonna make notes 😝 thanks so much. Have a great weekend x
Hi, I second what Tinks said - you should definitely get tested for hormones. The pituitary gland can be damaged in a brain injury resulting in hormone deficiencies. Try and get a book ' Mother of a suicide' by Joanna Lane. It's brilliant the research and effort she has put in to rause awareness of this. Don't let them fob you off either by saying there's nothing wrong after the first test, there are others which can be done - this is exactly what happened to my husband, mow he's on daily injections. Think, you should also get these other tests done. You have to push for them, as the treatment is very expensive so they don't want you on them!
Thank u, definitely looking into it x
Thanks for the tips x
Hi FlowerPower
Can I ask. What are the investigative tests called that your husband had that located the issues with his endocrine system?
I'm due back at hospital in two weeks and I'm fearful of being fobbed off. Is there a name for them? And if you don't mind, what dysfunction was found and What is the daily injection your husband needs? How do they help etc.
Sorry for all the nosy questions
...
Many thanks
Tinks 🐈⬛ x
Hi, the first test he had was called a short synacthen test, and that came back normal. Then he had 2 more, I can't remember one, I'm sorry, but the main one was Glucagon Stimulation Test, and his was where the results were very low. He was suffering from GGD, Growth Hormon Deficiency. They started him on daily injections of a hormone called Norditropin, but they stopped being able to get that last year so now he's on one called Omnitropin. I'd like to say it made an enormous difference - it didn't, but enough to make it wrth doing. His speech improved, he became more inclined to socialise and join in conversations, walking improved slightly. Lots of little things really, which all helped. Can I suggest you Google the Christopher Lane Trust, the lady who runs it, Joanne Lane, is fantastic. Even reading it will help you I'm sure, but if you contact her she will be able to help you more than I can. She helped us a lot, we'd never have known about it but for her. Good luck! Please let me know how you get on. X
Thank you for getting bk to me, I'm definitely going to call the trust (never heard of it before) as I've had all sorts of fluctuating problems I'm not sure where to start.I'll certainly let you know how I get on.
Thank you
Tinks 🐈⬛ x
Hi, how are you and yours? Well I hope.
Just letting you know, I had my 2nd appointment and was refused investigative tests, however I pressed him for my antibodies to be checked and I've just been sent my results.
Looks like I have an autoimmune disease.. my TPO was elevated at 74. Normal is under 34, however, no treatment offered as my T4 and TSH within "normal" range.
It sounds like Hashimotos but not specified in writing to me. Again I've had to deep dive to come to this conclusion. Obviously it fits all my past and present symptoms and injury can cause it, amongst many other things.
I just wanted to let you know and thank you for sharing your experiences, it's very much appreciated 🙏
Looks like I'm going to have to wait till my body destroys my thyroid before I will get any treatment.
Much love
Tinks 🐈⬛ x
Hi, thanks so much for letting me know how you got on. Sorry they haven't been much help, but please don't give up, keep on until you wear them down! Do you have any support? As I know it can be difficult, my husband wouldn't have bothered, I know. Thank you for your kind comments, and I wish you the very best in your endeavours xx
I'm booked in to see my GP this afternoon. I trust him and he's always been really good so fingers crossed I get thyroid replacement treatment.Tinks 🐈⬛ x
Keeping everything crossed! 🤞🤞🤞
Good morning Forty-something
26 years on I so understand what you are saying, it is somewhat painful to hear others in this predicament. Not that it's any help it is at least a little comforting to know you/we are not alone.
Yes, it is good to find somebody to talk to and it helps while the conversation is going but immediately after there is a let down.
As far as I have worked out the best thing to do is distract yourself as much as possible with something you enjoy and like doing, it will pass.
And always remember YOU are worth it.
Best wishes
Michael
hi … it is horrible when your like this .. an empty dark pointless place .. I feel like I’m in some sort of void … I’ve tried reducing antidepressants and did this over several months as this is the best way to reduce side effects .. all was ok except anxiety went through the roof and I was still emotionally dead .. I’ve recently been going to counselling with mr husband .. been going for approximately 6 months . We did stop and I crashed with the anger issues ( mine is bad) so started back with the councillor and both of us are reading the Chimp Paxadox a book that I had read a small amount before TBI .. with the councilling and book . I am in a very different place .. along with my husband who thought this time is know understanding me .. as communication was not there .. this all is just what I have been doing and it has helped .. I do t feel dead … but councilling and the book is an amazing tool .. Ps and of course the bloody Menapause 🤪🤪🤪 ..Sue x
Hi Sue, I’ve tried lowering the antidepressants too, not good, only then u realise how much you need them don’t you. Anxiety and emotionally empty, that’s it! I can’t remember the words I need to say it. Communication is difficult, hubby says he understands, he gets the doing too much/need rest, over stimulation with noise/lights etc, side of things, but I still feel like the emotional stuff he doesn’t. I’ll definitely try the book, as I will the one Flowerpower62 suggested. (Yes I had to go back to find the name 😝 ) such a supportive group on here. I couldn’t remember the name for ages and I forgot how wonderful you all are, thank you 🙏 xx
if it helps I read back over conversation on here and think oh yes I agree or very interesting then I realise quite often that I wrote it 🤪🤪🤪🤪🤪😂😂😂😂 does make me laught and uneratand my memory problems Plus I actual sound quite intelligent on this wonderful new world we all live in 😂❤️🤪 Sue x
well, I’ve already started the audio version of the book, and omg! It’s so clearly explained, so much easier to understand than the months of therapy I had 😩 I’ve made some notes too! Sue I can’t thank you enough. I’d tell anyone who was still confused about the emotional trauma and how to learn to cope with it to listen ❤️
Oh bless you I have been a lover of this book for many years and never read it all 😜 bet it is life changing I believe for not just me especially now plus my husband reading it … it’s something that schools should be getting kids to read .. not Shakespeare (don’t condemning Shakespeare ) as even with a small amount of knowledge of this book ir would help thousands .. it changed my thought pattern by just reading the first bit but know I’m reading it all it even more fantastic then I first though … Sue x
From the sample I had I knew it would explain so much. Just telling my eldest daughter and she agreed completely. She’s going to read it now 😂
Like I said the audio works better for me as I don’t take in what I read. We all know that don’t we 😝 xx
I’ve been talking about this book for years as it is amazing .. even more amazing when you read it all 🤪 hopefully your daughter will like it also Sue 😊
I would say doctor or Headway. They have a helpline which may be of use. If you are feeling overwhelmed then could you say yes to invites out and stay a short period. Its nice to see people. But sometimes long time to too much.
Lack of motivation
Exhausted in caring 
Lack of sleep
Another downside of Christmas
