Atombomb

[Atombomb]

So having spent alot of the past week resting in bed, it has dawned on me that I feel worse now than I did 2 months ago in terms of fatigue. Yesterday I went to visit my horses and spent five minutes poo picking , I was out of breath and had to sit on the floor. After a couple of hours "pacing myself" I couldn't wait to get home, I managed to shower and literally fell into bed. Its six months since I was told of my Subdural hemorrhage, it dissolved by itself and I was told there would be no lasting effects. Monthly phone calls from Neuro have stopped as everything I am experiencing is apparently normal, I am desperate to return to work but how can I when just getting up and out is a massive challenge. GP says there there , chronic fatigue takes time, repeat blood as not normal but don't know why🤷‍♂️ I'm at a complete loss as what to do. Rant over, thank you.🙃

[pinkvision]

How did you get your SDH, did it just happen or did you have a head injury first? The cause makes a big difference to what medical procedures are put in place for you.

Think back to before the SDH, did you bump your head or get some kind of whiplash. Did you fall of your horse, fall over and bang your head, did you bump your head on a cupboard, did something fall on it, or were you in a car when the brakes were suddenly slammed on, making your head jerk forwards or backwards or side to side. It may have been something you did not pay much attention to at the time.

Have they told you where the blood came from?

[Atombomb in reply to pinkvision]

Hi Pinkvision, I did bang my head, didn't think anything of it at the time, then got a severe headache that wouldn't go away. Carried on for ten days work etc then sent to a&e . CT scan found the bleed on the left side . They said hitting my head on a shelf would make sense.

[pinkvision in reply to Atombomb]

Your heath authority is as bad as mine, if your GP does not understand what your blood test is saying he should be referring you to someone who does. Your neuro team sound crap, they should have referred you to a neuropsychologist at your local brain injury unit. All this is written down in the NICE head injury guidelines

nice.org.uk/guidance/ng232/...

nice.org.uk/guidance/ng211

I had to fight my health authority to get anything done properly.

I changed GP practice and was referred to another health authority for an assessment. I ended up going to the Walton Centre in Liverpool who confirmed the brain injury then sent me back to my health authority for a neuropsychology assessment (they had refused to assess me previously).

Once I got in they were good but after the assessment where they found a whole range of sensory and cognitive deficits, I was told there was no funding for rehab.

It sounds to me that what you are experiencing is similar to what happened to me where my original GP just waved the symptoms away as mental health and chronic fatigue issues.

Chronic fatigue is not the same as cognitive, sensory and physiological fatigue experienced after a brain injury (people without brain injury get chronic fatigue).

It's up to you how you approach getting taken seriously but as soon as I began challenging my GP and health authority things began to move in my favor. You may have to fight to get the care and treatment you should be getting.

Remember the government admitted the health system were failing people with acquired brain injuries in 2021

questions-statements.parlia...

So far a new strategy for diagnosing and treating people with ABI has not seen the light of day.

If you print out the NICE guidelines and the government statement and take it to your GP and explain that you want proper treatment and help for dealing with your condition. You won't get anywhere if you don't take a stand. If your GP won't do anything make sure you make an official complaint in writing and go to another practice and ask if they will look at your condition with 'fresh eyes.' Going to a new GP practice is a big deal for the new GP and they should refer you to have face to face, not telephone, consultations. Once you have, ask them to be referred to neuropsychology, a neurologist is no good to you if your SDH has cleared up.

Good luck, just ask if you need some advice.

[Atombomb in reply to pinkvision]

Thankyou, your advice is very much appreciated. S X

[catrabb1t in reply to pinkvision]

Your reply is interesting by saying that "Chronic fatigue is not the same as cognitive, sensory and physiological fatigue experienced after a brain injury (people without brain injury get chronic fatigue)."

I feel the same and have voiced this to my GP but my words and thoughts get lost... My GP has referred me to a chronic fatigue clinic and am waiting for the appointment. Yes me GP did waved the symptoms away as mental health and chronic fatigue issues.

I will go to the appointment and ask them questions. Then I can report back here what they say about BI and their service. I caught Covid when in hospital and I sometimes wonder if I have long Covid. This thought is because of my breathlessness - it that BI related or Covid related? I would love the question to be answered - does BI cause breathlessness.

[pinkvision in reply to catrabb1t]

Will look forward to what you find out at your appointment.

[catrabb1t]

Your post has given me thoughts about my SDH which self absorbed. I don't think of it because I had 2 bleeds at the same time and the other one needed a craniotomy, I've spent time thinking and talking about that bleed. I don't think I have ever had a conversation about the one that self absorbed which was confirmed a few days after surgery and meant I didn't have to have a second craniotomy. Consequently I have put all mys symptoms down to the surgical bleed. You are struggling with very similar symptoms to me with the breathless, need to be in bed a lot and fatigue. This opens up a new way of thinking about my own situation and subsequent conversations I have.

PinkVision's response is also interesting by saying that "Chronic fatigue is not the same as cognitive, sensory and physiological fatigue experienced after a brain injury (people without brain injury get chronic fatigue)." I have been referred to a chronic fatigue clinic and am waiting for the appointment. I think I will contact them to ask this question and see if they are sure they can help me. As PV says "GP just waved the symptoms away as mental health and chronic fatigue issues." - which is true for me too. Although I caught Covid when in hospital and I sometimes wonder if I have long Covid. This thought is because of my breathlessness - it that BI related or Covid related? I would the question to be answered - does BI cause breathlessness.

Like you, doing light physical jobs is like a full cardio workout for me. Increased heart rate, quicker breathing until breathless and very hot like I have run a race. Interesting you mention the action of picking up poo. It is this same action that caused me most difficulty in the first 18 months. I also felt a bit wooshy in the head. Could it be that bending over and downwards is affecting the BI (as I assumed), or is it affecting lung capacity from Covid?

I have rested SO MUCH in 2 years and slept a lot. I am definitely having cognitive improvement after the 2 year mark. If I over-do it then I lose cognitive skills and it slips back to being overwhelmed, more noticeable impaired memory and headache along with massive fatigue. I am also affected emotionally. Over-doing it just means too much thinking or too much physical movement. Stress affects me in the same way.

I agree with PV that your neuro Rehab team should have referred you to their neuropsychologist. This happened for me and it was very good support and the testing provided some interesting results.

[Atombomb in reply to catrabb1t]

This is very interesting, I had covid a month after my BI, long covid has been mentioned. GP not sure which is causing which symptoms, its all very confusing.

[Ideogram in reply to Atombomb]

Also similar - since my TBI three months ago, my GP now thinks that I already had long COVID. I got another chest infection after my TBI (and possibly other bugs too - it's so hard to tell what's what) and I've really struggled to shake it. Good luck.