In March 2018 I sustained a significant head injury(open temporal /occipital fracture with csf leak on) Since then life has changed drastically. My balance has been so affected I’ve broken my left leg whilst out dog walking! My right leg and foot had been crushed and then totally rebuilt previously so I feel really unsteady most of the time and have a hiking stick with me when I’m out and about. The migraines that haunt me can be soul destroying and completely scupper my day. I’ve accessed MH services for support with my anxiety/panic attacks and although the team members I’ve met are really lovely I’m not sure it’s the appropriate support that I require or if that is even available on the NHS.
Can anyone advise me of or point me in the direction of more appropriate therapy/MH support? The obliteration of my savings since 2018 does not afford me the ability to access private health services, but any ideas are very welcome
Many thanks 💛
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J_J_758
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YouTube has amazing alternative therapies, lots of crap too, so learn to differentiate and just try stuff. I did, and fixed most of my brain injury symptoms both physiological and neurological, I did not have any MH issues. Brain injury symptoms are often mistaken for MH conditions so you will need to work out whether your MH are actually neurological instead.
Hi JJ, thought I'd get back to you. I wrote a post about going to the funeral of a friend of mine yesterday. She had had 2 brain injuries but these were never really acknowledged by her GP or family and consequently they all saw her brain injury symptoms as mental health conditions.
People do have mental health conditions after a brain injury but these for some reason are used to define brain injury symptoms. For many people this means they are pigeon holed as mental health patients rather than brain injury patients and all their descriptions about their symptoms are seen as delusions etc. That's what happened to my friend so she took her own life.
I was thinking about your post last night after you wrote that your 'mental health' conditions started after your brain injury. Are they mental health conditions or are they brain injury symptoms.
Like my friend you have scans showing you have a brain injury yet it seems you may also be pigeon holed and it played on my mind. Not another one I thought! so I thought I'd get back to you.
Have you been to a neuropsychologist to be assessed. By assessed I mean have you had all the tests and not just a chat and an opinion?
Have you also had the hypopituitary tests, (these are now meant to be standard under the NICE guidelines) because brain injuries can affect your hormone levels and the symptoms from that can be mistaken for mental health conditions.
Same goes for your vitamin B12 levels
As your balance has been affected have you been assessed for cervical/ vestibular/ ocular reflex issues. If you have, have been seen by a 'real' neuro-physiotherapist rather than a bog standard one?
Because you have leg injuries how are these affecting your body posture because this can also cause mental health like symptoms.
The combination of cervical/ vestibular and body posture issues could be causing you migraines.
Your anxiety, your worry about the future, is this caused by a sense of hopelessness because you are not getting the right assessments or treatment. If you read a lot of posts on here the underlying factors for mental health conditions have nothing to do, directly, with the brain injury itself, but rather than the frustration of trying to get help.
If you think you have not been assessed or treated properly then I would strongly suggest getting a second opinion from a GP in a totally different practice.
I did this and the new GP took it very seriously and followed all the right protocols, I was sent to Walton, a center of excellence for brain injuries, in Liverpool and was properly diagnosed. The neurologist wrote a fuming letter to my health authority for not acting properly and consequently I had a full neuropsychological assessment, my mental health fell into the normal range and all my symptoms were found to be brain injury related. Unfortunately my health authority have no rehab for TBI cases so I found alternatives on YouTube instead.
Hi PV... what an amazing and supportive reply and JJ... I get it and now how absolutely frustrating it all is. I had an SAH in 2018 and it's taken 6 years and 'an urgent referral into secondary mental health care' to get them to take me seriously. They are now seeing all the deficits my brain injury has left me with along with massive mental health issues. They seem terrified (or just unwilling) to work with me BECAUSE have a brain injury! Sorry rant over but I really hope you are all heard respected and treated properly including me x
Everything you have said is EXACTLY what I’ve been feeling since 2018 (disregarding Covid years) I’ve been trying to focus on improving my mobility (rather pitifully) as that was something others in my orbit could see needed fixing. Every time I mentioned TBI eyes rolled and elbows nudged and reply of ‘you seem fine to me’ has made me retreat into my self so much that life seemed to just stop! After awhile (and I’m sure cauldron stirring) opinions of ‘you need help you need to speak to someone’ have been lobbed my way.
I’ve accessed NHS MH support to get my foot in the door within 2sessions the lovely lady frankly said to me that this was not the support I needed. I needed high intensity support and put an immediate referral .
Awaiting an appointment.
I would have had no idea about treatments you have mentioned or that any of them would be available thank you for taking the time to inform me.
I will be reading up on them immediately and exploring further.
I’ve thought about reaching out to Headway do you think they would be able to help also?
Thanks. Yes, you should reach out to Headway but remember that most of the information they have is a regurgitation of what the failing NHS system says.
Hi JJIt is really common for docs to mislabeled brain injury as MH. They get 15 minutes, think all bi's look like a skull fracture, and many believe a concussion is a 6 month recovery time.
Ha ha ha ha ha.
The thing is, the treatments for MH issues are completely wrong for bi people.
I am in Canada and belong to a bi society - I think you have simular in the UK through Headway, or Headway will know where they are - the number is under the pinned post to the right.
When I first started to go I was warned to stay away from MH treatments and people with MH issues. Think is I had a dear friend at the time who had a mental health issue requiring medications monitored by a psychiatrist, so I tried to maintain it. I now understand why they said that to me. It's just not a fit.
I also know of people who go to the society who have diagnosed as bipolar and they dont have it, it's just the MH professional didn't understand how changes in emotional processing can be bi related and not a bipolar thing. (My suspicion confirmed by professionals who knew the difference.)
I was diagnosed with depression and anxiety after the injury - with what we go through I think a person would be in that boat because of all we go through. For what it's worth I never thought I had either and I do have PTSD.
I do not have scans etc that 'prove' brain injury.
I went to a neuropsychiatrist who made a clinical diagnosis. (My original gp said I had a concussion and the accused me of malingering when I was not better at the 6 month mark - I was still having issues walking and speaking and I would throw up and be on the verge of passing out in some circumstances - his treatment was to tell me to knock it off. )
By sheer luck I ran into someone who knew what was wrong after talking to me for literally 20 seconds, and who told me what to do and followed up with me til I did it.
This was to go to the local bi society and ask them who to see. I got a different gp and asked them for a referral and got it.
There are neurons that go between the white and grey matter of the brain. Inflammation melts the tails. This is called axonal shearing and there is no cure. It also does not show on a CT or MRI.
Some people crack their skull, are in hospital awhile, and then walk out the door with very little after impact. And some of us never land in the ER and are toast for years.
Neuropsychiatris are Mds and Psychisyrists and also have studied the brain, which h is why if one of those says bi and not MH the system will listen.
There are also neuro psychologists who can test. They can't give medications and also don't have the same clout as a doc. Still very useful to get an assessment from a reputable one.
The medical system is woefully unprepared to deal with us.
Yes, seek help, if you can find useful things great. And, and it's a big and, you need the medicals to get benefits cause most of us can't work.
BTW a diagnosis of chronic anxiety can also get you benefits.
Mostly you will be on your own to figure out what works for you. It will be trial and error. Pink Vision has done a lot in this area and has helpful suggestions.
I took the approach of finding what my brain wanted to work on and doing rhat, little by little. Started with figuring out how to open a door knob, how to move a leg - simple stuff. I made friends with my brain.
Yes I had a neuropsych until he had to retire, but really I did my own therapy. I tried to see some physio people but could only get so far. They really didn't get the limitations of the brain injury. His real value was in signing papers and keeping the system off my back, which was a giant help.
The bi society here is really good within their limits. They explained what the injury was, help me with paperwork when I get stuck, and they offer programs on coping skills. They also have art therapy, chair yoga and a few things on site I have never gone to. Their offices trigger the mobility issue and I literally cannot walk when I am in there. My brain has issues with some sorts of space and tiny offices with lots of corners and angles do not compute.
A lot of people with bi don't have mobility issues and a lot do.
Do get as much info from Headway as you can, and ask for a bi society or association in your area. There is also lots of basic info online from brain injury organizations in the US and Canada.
Also, ask questions here and vent here.
People will.share what worked foe them, understanding your mileage may vary and you have to figure out what works for you.
Practically stuff - get yourself a 4 wheeled walker. A physio may be able to get you one through the red cross. It will help you stay stable, give you something to hang on to, and a place to sit down where ever you are. Get a fold in half one - they go in cars better and can squeeze through here and there better.
Migraines. Geez those suck. I still get a kind if those. Here we have a fascia release for pain where they inject glucose or saline - the needle going in makes the tissues relax. It is covered by are medical system here, so may be there as well. I will post a li k to a place here and maybe someone will know what you call it in the UK.
Rest. Pace yourself. Sleep is your friend.
Step by step - it can feel overwhelming and it takes time.
myoActivation® is a methodology used to assess and treat chronic pain conditions. It combines releasing muscles in sustained contraction, fascia under tension and relevant scars with the aim of resolving pain.
Dr. Greg Siren based the myoActivation® system, on the trigger point needling technique developed by Travell and Simons in the 1960s. It is detailed in their book, Myofascial Pain and Dysfunction: The Trigger Point Manual.
myoActivation® uses specific trigger point and other needling techniques, e.g. scar release. These protocols are based on years of experience. Dr. Siren and his colleagues have had 50,000+ encounters using myoActivation®.
To ensure quality assurance, myoActivation® has been trademarked and myoActivation® training is now delivered through the Anatomic Medicine Foundation, a BC non-profit society. You can take a look at the foundation’s website to locate other physicians in Canada that have been trained or for more information: anatomicmedicine.org.
Wow thank you so much for replying to me. Everything you have said just ….makes sense to me. I will definitely contact these organisations and research all the info you’ve kindly given me.
hi J_j I’ve had depression before my TBI and it is nothing like how u feel now .. I’ve tried to come off my antidepressants which I did extremely slowly as it was thought that maybe why I was emotionally dead … it never changed I was still emotionally dead and my anxiety went up … I’m asked to see /get help with counselling that I’m 💯 behind but the truth is the lack of help , understanding , waiting list , ignorance of TBI are what’s contributing massively to the hell of living with a new brain .. your answers on here is the best you willl get and please remember we all understand and you are not alone .. this site has saved me ans educated me My big question to everyone on here is how do we get the so called Professional to hear us as even with a GP who could find time to listen to you and show compassion plus making reffurels to the correct people would help our mental health so much .. not the non existent approach most of us are getting … I’m reading something like the ghost in my brain ( can’t remember the title) but it is amazing just how weird out brains are and I’m having several OMG !!! Moments as it sounds like i have written it . … Sue 😊
They put me on so many anti depressant after my injury and all they did was make me feel like a zombie 🧟♀️ and never touched the symptoms I was showing/feeling. I’m very reluctant to try anything like that again. Some of the guys on another group have suggested duloxetine for pain but my knowledge on it is negligible.
Thank you for your kind words and support.
I feel your frustration around professionals not being appropriately trained on brain injuries. I am exasperated trying to make family members acquaintances understand that this is not malingering it’s a heavy cross to bear every single day.
If you remember the name of that book let me know. I used to read for…days but it’s fallen to the wayside. Though I hear audio books are all the rage now.
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