New to the group. Looking to find others who have ... - Headway

Headway

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New to the group. Looking to find others who have long term probs after a tbi.

Emmababyk
Emmababyk

Hi i am emma from hinckley leicester. I have bppv and struggle with my memory and fatigue. I am looking for people to talk to. I alao want to know if other people struggle with pain in thier limbs and weakness since the accident. I have been diagnosed as fibromyalgia as they cant find anything wrong but i think its the injury to my brain. I am feeling very alone. I would like to make new friends.

19 Replies
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Hi Emma,

I'm Andy from Lincoln. My TBI was 25 years ago and I suffer with aches and pains, headaches, fatigue, etc. It's all part of the journey, sadly. I'm sure a lot of users of this forum know exactly what you mean, you've come to the right place. Make yourself at home

Andy

Emmababyk
Emmababyk in reply to BaronC

Ive never sat and spoke to anyone about how i feel since my accident i have just been soldiering thru. But its getting to the point now i am struggling. No ones explained to me much about what im going thru. Maybe the headway lady will be helpful and a social worker.

hi love you have a family here welcome and we have angels on our helpline x

hug eddie

Hi Emma

My brain injury was 1998 and am still struggling with doctors not taking me seriously. Still have memory problems tiredness, constant headaches. I'd like to say that they will go, but sadly they've not. Some days are worse then others. Have you not got family or friends that you can talk to? Not one for posting very often, more of a reader on here then a poster but pop by when you fancy a natter there a good group on here.

SillyPhil
SillyPhil in reply to Chelle3069

Mine was in 1998 too Chelle. Seems a long time ago doesn't it?

Chelle3069
Chelle3069 in reply to SillyPhil

It don't mean to say I feel any better though, I have some days where I feel so bad that want to give up, and wish I didn't wake up. I have no one around me from that time as every one has bailed on me and I can't seem to cope with the still after effects. What about you, how do you cope with it all. My partner I have now is starting to struggle with it, he wasn't about in the beginning, I was once married and he was removed from the family home because he became violent after the surgery. I suppose he found it all hard as he put it ' I was no longer the person he married and didn't sign up for this'. Assuming you were married or in a relationship how did your other half cope with the change in you? Its nice to have someone else that had there surgery around the same time, cause sometimes feel like a fraud and maybe should be back to this horrible word 'normal'

SillyPhil
SillyPhil in reply to Chelle3069

I had a Traumatic Brain Injury then my life fell apart. Mine was different in that I was released from hospital and everyone thought I was OK. I wasn't. It took 6 years to get diagnosed. Because I appeared OK and could hold a conversation they thought I was OK. It's called the frontal Lobe Paradox. I even thought I was OK. Just different. But I didn't link it to the accident. Anyhow, I lost my job, friends, life in Australia, Wife... I was a total mess for years. Various suicide attempts and abusing alcohol for years. I still miss the old me but I've now got a grip on life. My now Wife struggles to understand me sometimes but she is very tolerant. I ain't ever gonna be normal. But I try to be the best 'Me' that I possibly can. Be happy.

Emmababyk
Emmababyk in reply to SillyPhil

I thought i was ok but things have just started to click with me that its not my mental health. Been vlaming everything other than my brain injury for my memory probs and pain etc. Now i have lost my benefits i am looking into my reports and illnesses and things are showing as i am actually really affected by my brain injury. Did no one notice i was this way. And just go along with it. Its so scary

SillyPhil
SillyPhil in reply to Emmababyk

Yup. There's no denying it. This is the new You and it is caused by brain damage. But I think that we all forget now and again. And so do our families, friends and partners. But that doesn't change the fact that we are what we are. I go to a local Headway meeting every couple of weeks, usually with my Wife. It's good to chat to others who have similar problems. And it reminds me why I am how I am. That might help you too. I too sometimes read my old medical reports - and it is painful to be reminded. But it did happen and we can't change it x

Hi Emma welcome to our group you WILL receive help and good advice from our group also contact Headway they are a understanding helpline who will listen to you and advise you on what organisation you should contact. Love Liz x🌹

Hi Emma,

I’m Janet and I’m 7 years into recovery.

Long term problems much the same as everyone else but I can also relate to the pain in limbs, with me it’s my arms in particular.

I’ve been back and forward to my GP, had Xrays you name it but still they scratch their heads.

Acupuncture helps as does massage, the pains only started after my 4 months in hospital, I put it down to neuropathy and have been flagging it up since day 1.

I thought amitryptiline May have helped, that was suggested early on but no it didn’t touch it.

Subcutaneous acupuncture completely banished the pain but then it came back and I was uncomfortable in thinking I may need that procedure every so many weeks.

However since being referred back to the rehab consultant, he prescribed pregabalin to help the pressure migraines I get and the side effect is it reduces the arm discomfort too. So, win/win there at last, he knew exactly what I was talking about with both my arms and headaches.

The discomfort hasn’t disappeared but manageable now . Hope you get some understanding soon, you just need to find the right person.

Janet

Ive had my esa taken off me as i didnt score any points. They put me on jsa but i cant work. Leaving the house is really hard. Dizziness and anxiety make my life so crabby and i get tired so easy. I feel at the end of my tether just lately. Headway has said they will come and see me and may ask for a social worker to come and get involved. I am a single mum. I have twins 13 yrs who live with me. I am really worried about coming clean to social and headway about how hard i am.finding it as i dont want my kids taken away. Ive got thru things until 4 yrs ago by taking drugs to ignore the fact i am not me anymore. Now i am off everything and back realising how hard it all is..and then on top my benefits taken away. I dont know what direction to go in. I dont feel like the doctors believe me.

surf-fan
surf-fan in reply to Emmababyk

Hi Emma i would recommend that you get some help for claiming benefits as they are well known for being very difficult to deal with . Headway could help you ask for a reconsideration and support thro the process .

Emmababyk
Emmababyk in reply to surf-fan

I will ask them when they call on tuesday i need to sort something i keep forgetting what i am doing and having a feeling of mass panic. Like im about to be hit by a bus like shock. I am so jumpy. I read about dementia. I am panicking i have that now. Feel like i am going mad.

surf-fan
surf-fan in reply to Emmababyk

you,re not going mad , effects of Brain Injury are difficult to deal with . i wish you all the best getting the support you need xx

Hello my lovely. On the 14th Jan I fell down my 12 stairs at home and suffered a massive traumatic brain injury, broke the base and right side of my skull, subarachnoid haemorrhage, and three brain clots. My family including my two children were told a number of times that I would die then they were told to find a care home as my disabilities would be extensive. I have been very lucky that up to now I have no effects from the accident or injuries much to Addenbrooke Hospital staffs surprise.

Years before my accident I was diagnosed with Bi Polar and since my accident I have become anxious, very depressed, tearful, worried and I seriously struggle with the guilt I feel over everything my family have been through. I have decided that enough is enough I have to get over what happened and move on, for my two children. I feel they have suffered enough.

If I can be of any support or help to you I am always around to respond to emails. I was a registered nurse so if I can help at all I will.

Take care

Vikki

Thanks guys. I went put today. First time since xmas to take my kids with ma dad to see and walk alpachas. I struggled so much. I was exhausted just from the ride in the car. I got back and slept 3 hrs straight. Everytime i go out i think i am going to be sick. And i cant hold a conversation as im concentrating so much on not passing out. Is this normal. My doctor just doesnt believe me and they think its fibro. Is there a specialist i can ask to see.

Hello my lovely,

My heart goes out to you as you are experiencing things that are making you feel so sad. Fibromyalgia is an awful condition that causes a lot of pain. As a nurse I am aware of most conditions and the symptoms they cause. But I really feel for you that your feelings are causing you to feel so down and alone. After my accident I struggled with a lot of anger more than anything else. But after realising how seriously I could have been affected by what happened and how much others are suffering from similar injuries II felt quite selfish. I was diagnosed with Bipolar years ago but thankfully it no longer affects me. But I do know how depression can take hold of an individual and affect an entire life. Please don’t feel alone. I am always happy to talk and help where I can. I have two children so I can’t always email back quickly but I will always reply and offer advice where I can. Please don’t feel alone. I have been very lucky I have no after effects from my accident. I think my family and I experienced a true miracle with my recovery.

Take care of yourself and email anytime.

Vikki Hutt

Hi Emma,My husband had his TBI over four years ago, and yes, it continues to challenge him (and me) every day. My best friend also has fibromyalgia. She goes to a fibromyalgia support group run by the charity Action for ME, and this has been a great source of help for her. Perhaps there is a fibromyalgia group near you? It might give you some fellow travellers.

All the best. Weatherwitch.

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