im new here. My TBI was 2008, and I have never been told of any support groups,so I decided to find one myself due to suffering in silence.
I thought I had fully recovered after a miraculous recovery following my injury, however the last 5 years have been really hard and I've struggled daily. I'm finding now that symptoms of the TBi are resurfacing for me.
i have been on anti depressants with no improvement,just decline. I have had so many random symptoms,which my GP has reffered me for CFS. The fatigue is consuming me and I am just a zombie at the moment.
I just wondered if anyone else has had symptoms so many years after their injury ? It doesn't make sense to me. Trouble with memory, speech, interaction, brain fog,fatigue, aches/ pains, sinus issues,vision impairment and just generally feeling unwell and not with it at all. I have also had what I can only describe as black outs. Fr a few seconds I have no recollection of events for that moment of time.
look forward to hearing any similar issues or stories 🙂
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Kee10
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Hi Kee, welcome, we are a friendly bunch, with various lived experiences.
What you are experiencing could be due to your previous TBI, and needs to be explored, but this could also be due to various imbalances, so these need to also be explored.
New here, diagnosed CFS, which started just after a risky head injury and subsequent continuation if contact sport and further bumps later.
Most CFS clinics offer very very little in the way of rehab. They do usually offer useful guidance about pacing to manage your life within your energy limits, and meditation for stress reduction.
As somebody with the CFS diagnosis, who have only now put the dots together and realised a brain injury needs to be ruled out, and looked into post concussion care (private and looking into NHS offers) I can't believe how much can be offered to people with brain injury issues, to help manage symptoms that people with MECFS get as well!
My advice is not to push for the MECFS diagnosis without fully exploring what that label will do for you in terms of access to care. Lots of pathways for various conditions will say thay don't take people with MECFS and a large part of the medical community and world are hostile or dismissive of people with that diagnosis.
Hi K, I suffer with chronic fatigue syndrome following a brain haemorrhage many years ago. With little to no help offered from the NHS I am going the private route, seeking my own pathway. I'm not sure if you're aware but cfs is caused by a dysfunctional autonomic nervous system, "boom and bust" cycle. Meditation and mindfulness does help.
I've gleaned a lot of info by watching YouTube videos (Raelen Aigle/Pamela Rose) - we've got to crack pacing. This is a link by PR to explain more about it; pamelarose.podia.com/fatigu...
Do you know who your gp has referred you to? Is it one of the cfs clinics (around the country) run by OT therapists? If so, I'm afraid there's little help they can offer! You can pm for further info.
I forgot to add I'm also trying an antidepressant called Cymbalta (duloxetine), early days (six weeks) but this is helping too. My supplements are; C-Q10, D-Ribose and Magnesium and cbd to help with sleep.
I would also get a referral to a neuropsychiatrist, who is trained to know what is brain injury, and what are other conditions.
It is good you are seeing who you are seeing - and who knows, maybe you have more than one thing going on.
I was injured the same year as you, and was told after 6 months I should be better by then, because that's what the gp learned in school. Well, I wasn't, and I am still not. I did see a neurologist - I found the old school guy didn't get it all - but, there is a new neurologist in town who evidently does - or so I am told.
Most of the people who go to a neurologist actually are there with some sort of brain injury, but this is only beginning to be recognized. It's pretty telling, because the old school ones look only for actual physical damage. The issue is much of the damage the brain gets does not show in an MRI or a CT, and has to be diagnosed by symptoms. Which, is why I say, see who you have lined up and also get a referral to a neuropsychiatrist.
You see, what often happens is the signals going from the control centres of the brain to various body parts or the control centres that regulate all sort of other systems may not be working as intended.
You may also wish to keep a journal of your symptoms, and I suggest also noting the weather at the time - not just rain or sun, but the barometric pressure and whether it is going up or down. Also track things like if you spend time in groups, how many people, how long, what sort of environment; what kind of noise or sound you are around; if the area is visually busy, high contrast, etc. Also note if you feel over heated, seem to take longer to recover if you get winded, if you get winded quickly if you walk fast , how you experience hot or cold.
You see, you can feel fatigued because your body doesn't cool off the way it used to, or your heart rate doesn't match your activity level and takes longer to adjust, etc etc. It can be rather tricky, and it is easy for medical people looking for a certain thing to see it if they are putting the injury totally aside - and most to - because it just isn't that well understood.
Also, people with bi's are more prone to certain other conditions.
Just take it steady, and look for answers. All this has been going on for awhile now, and you've managed to survive. I know it's frustrating. Because bi isn't well understood, therapy is pretty hit and miss anyway. (For me it's mostly been a miss, for various reasons.)
Keeping the journal will help you make sense of it, and help you manage yourself. Pacing is really important, so awareness helps quite a bit.
There is a ton of info out there, and a ton of coping strategies, that generally you have to try and figure out what works for you - we are all different. Hearing what others go through can be really helpful though - it kind of normalizes and validates the quirkiness, cause some of it is really quirky.
Hopefully you'll get some answers , and find some coping strategies etc that will help you.
HI Kee, my heart jumped when I read your post....I also had my SAH in May 2008 & have seriously struggled the past couple of years?
All the symptoms you describe I can relate too, but have not had them attributed to my brain 'pop'? I had severe spinal issues over lockdown, which eventually resulted in surgery & have been attributing it all to that - now I wonder? I know things are not 'right' and some days I could remain in bed & sleep 24hrs? However, I have avoided anti-depressants as haven't found them helpful in the past, my GP has never mentioned alternative causes or reasons or support.
I am so sorry you are experiencing this, it is a daily struggle! It does sound as though you are investigating probable cause & will soon receive the help you need to get back on track....I wish you well & will follow your progress with great interest & hope!
Sorry to hear your struggles Kee, But I can totally relate to your situation, I also had a severe brain injury in 2008 and despite relearning everything again from scratch and making a miraculous recovery to get to the stage I have got to know, it was due to my own hard work and determination without very limited support from the NHS once I had been discharged from hospital.
I have therefore had to look at going down the private route for other medical services to help me improve further,
After I have almost been left to accept the remaining issues I have and just got on with life without little support from anyone
hi, in my case they were always there! Just as time went on become of my symptoms!!! Good news is they become less constant!! I joke to myself every time it’s like my new neuron that’s growing in a very dusty attic is BORED!! Needs someone to .. pester!! I smile to spite him!! Is tough but hope u too will adapt to it. Learning all over agai,!!
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