Atombomb

[Atombomb]

So its one of those days when you are at the end of your tether. Neuro tell me what I am experiencing is normal. The fatigue, brain fog, memory loss . I wake up and go to sleep with a massive headache, whooshing I call it, I am up several times a night as I cannot switch off. Sometimes I dread going up the stairs as I'm so knackered and out of breath. My before BI anxiety and ocd are off the scale and exhausting also, I need to get back to work but just looking at the computer is foreign to me. I loose hours of my day , where do they go? Chronic fatigue is a bitch please tell me its normal.

[Atombomb]

And the excessive sweating, what is that all about?

[WonderingWanda in reply to Atombomb]

It sounds as if you may have sympathetic nervous system in overdrive. It’s not uncommon in TBI for the autonomic nervous systems to get out of whack. It’s called Autonomic dysfunction so you can look it up.

I found the heart rate and sweating and breathing all to be affected. But the good news is that meditation and yoga breathing techniques really do help.

I found a great yoga teacher who had also suffered with a head injury many years earlier so they knew exactly what I needed. But any good yoga teacher would know about how to quiet the sympathetic nervous system (the anxiety and fight/flight) and switch on the para sympathetic system (the calming side)

The fatigue is some thing you have to learn to live with. Time will teach you what you need to do and avoid. But only if you keep a diary of activities and how you feel. Then you look back and spot patterns.

It will get easier. Be patient and never try to force yourself into finishing off an activity if you know you’re not up to it. That’s the really hard thing.

[Atombomb in reply to WonderingWanda]

Thankyou WonderingWanda,Its so good to hear that its not just me. I will look that up, thanks again.

S X

[Insaneinthemembrain]

hi Atom bomb.. I had a TBI 8 months ago and you’ve described how I feel on a daily basis perfectly. The whooshing is particularly annoying!

I’m trying to learn to navigate the fatigue but it’s hard to figure it all out and that’s confusing in itself.

It is ‘apparently’ normal to feel like this for months.. it takes its toll on you though and can make you feel very down.

Try and stay positive, it does get a little easier and the panic attacks ease a little with time.

Sending hugs.. here to chat and moan to if needed!

[Atombomb in reply to Insaneinthemembrain]

Hi InsaneinthemembrainThank you so much for replying, it really does help to know I'm not alone, take care

S X

[pinkvision]

Yep, everything you are experiencing is normal after TBI, it will continue until you accept the reality of what has happened to you and take the recovery process seriously. Sounds harsh I know, but now you have come to the six-month period after your injury you may want to get a neuropsychology assessment.

Make sure you have an assessment not just an opinion, the assessment is called the 'Battery Test.' It will give a profile of your ability to pay attention, concentrate, test your audio processing, language skills in verbal and written form, assess visuo-spatial processing and executive functioning.

If you have not had an ENT assessment you should get one.

Also go to an osteopath and get the positioning and shape of your head, neck shoulders and spine assessed to see if they have become misaligned. (go private it's so much quicker)

You also have light sensitivity at least and you should also get that and your visual processing tested too, you may have issues with your eyes but also with the processing in the brain. (you can only get this privately from an OPTOMETRIST)

babo.co.uk/

cardiff.ac.uk/optometrists

Fatigue is normal, but until you start addressing the causes of your conditions it will continue. You can help yourself in the meantime by avoiding anything that triggers it such as computer screens, bright light, echoey rooms, too much noise, shops and chaotic environments etc. This will reduce your sensory input which causes sensory overload and fatigue. If you get tired/fatigued and feel like sleeping then go to sleep; fighting against it will just make you more fatigued.

A brain injury is life changing and you have to adapt your life to it.

Make recovery your goal in life, it will take as long as it takes; it could be 6 months, a year or 5 years. It depends on the individual and also depends on you and how you approach recovery. NHS services are hit and miss depending on where you live, some are good, some appalling and others in the middle somewhere, so don't be afraid to go private or alternative, if it works and gets the job done then it's good enough.

You are positive so stay positive, it's 50% of the process, the rest is finding out what's causing your issues and solving them with hard work.

It's all doable.

I was told 2 years after my TBI that I would never recover so I decided to find out about TBI and how to recover and did it. If I can do it so can you!

Good luck and never give up.

Oh, you may want to read 'The Ghost in my Brain' by Clarke Elliott. It's the story of an AI professor who had a TBI just like yours and goes through the process of how to recover.

[catrabb1t]

Hi Atombomb

You're going through a really tough time. How you describe it reminds me of my first 12 months. Once we move on to the next stage by improving some symptons we tend to forget them until prompted. Reading your message reminded me of quite a few things.

Your experience does sound normal to me. With the exception of the headaches you have, I experienced all of them.

"I am up several times a night as I cannot switch off". - I never got to the bottom why this happened for approx 6 months. It was awful. My anxiety levels were through the roof and I was close to panic attacks and had panic attacks through the night. It has been the most frightening experience of my life. My brain was totally wired. I know it was trying to make sense of things and work timescales out because I had memory issues. It really went in to overdrive. I really understand what you are going through. And being this way through the night brings exhaustion. My whole system was affected by elevated anxiety levels and my stress response was so sensitive. When awake I was unable to watch action scenes on tv. I could not wait for the GP to phone me if she was delayed because I could not wait. Many things brought panic attacks. I had not suffered with panic attacks before brain injury.

"Sometimes I dread going up the stairs as I'm so knackered and out of breath". - Yes this was me. The stairs were so hard to navigate for about 12 months. My mobility was good post-surgery but there was something off-key and I felt anxious on the stairs and the exertion of going up and down exhausted me. I had no issue pre-brain injury. This affected me so much that i still want to move to a bungalow even though I am ok on the stairs now. I am no longer anxious and my breathing is normal. I never got to the bottom of why any action I did left me breathless and sweaty. Housework became my rehab because it was so hard to do. It felt like the equivalent of running a long race.

"My before BI anxiety and ocd are off the scale and exhausting". - It is likely that your recovery is a little more complex given your MH experiences pre-brain injury. You would benefit from support for this. I was supported by an OT in the neuro Rehabilitation team. I cannot remember the work we did but over a few months it really helped me overall. I gained a lot more insight and understanding of what was happening to me which massively eased my anxiety levels. Have you got that team where you live? In my experience the Community MH team did not have the skills. I tried them first and it did not work out. They focused on anxiety and I could not follow their guidance or info. That's not to say yours won't, there could be an OT in that team who has some skills. Your can self refer to the CMHT. If the professional does not have brain injury knowledge, I do not think they will be able to help you because it will be a different focus... But it is definitely worth a try if you cannot get referred to a Neuro Rehab team.

"I need to get back to work but just looking at the computer is foreign to me". - I'm sorry you are in this situation. This might be a huge factor in your extreme levels of anxiety. Fro what you have written, you do not sound well enough to return to work or have these discussions? How do you feel about it? Are you thinking of reduced hours? How many do you want to work? Can you do the job you were doing before? It does not sound like you can if it is computer based. Many of us struggle with computers especially in the first few years. I remember I phoned Headway a few times about it. They gave me some advice like using a yellow screen to ease things visually. I didn't buy one in the end because I used the computer less. I do not need one now and my symptoms have gone, except I still do not use the computer for what I used to do (I no longer work). Perhaps give Headway a call. They would be really good to talk to about your need to return to work and using the computer, plus everything else.

"I loose hours of my day , where do they go? Chronic fatigue is a bitch". - my sense of time passing is different now. This has not improved for me. I also experience extreme levels of fatigue and the pace of life is very different. In my first 12 months I was in a haze of tiredness. Everything felt hazy and remote. This did lift but I still experience fatigue. The OT really helped me with strategies for pacing. There is quite a lot of advice on here for fatigue and pacing. You can do a search to find the messages. Fatigue is very debilitating and changes your life. You have already struggled a lot with your MH so you will not be a stranger to finding things hard, but brain injury is another layer on top. Please try and get some support.

Can you find out if there is a Neuro Rehabilitation team where you live? Headway might know the answer to this.

Keep talking on here. It helps. Hope you are having a better day x