2 years on, I'm back with updates :)
 

Hello everyone,

Hopefully some of you will remember me, but it's been a good long while since I was on here!

When I first started looking to Neurotalk for answers, I was curious to hear from people who were further on in their journey, as I noticed there were mostly newbies like myself wanting to drop in and find out information, so I thought I would come back to provide an update.

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History
Whiplash injury and concussion symptoms from minor assault at work (a person with a learning disability) in December 2013, then a month later (January 2014) another whiplash injury and concussion symptoms after my car was rear ended.

After that I had fairly standard PCS symptoms and was no longer able to continue my career path towards being a clinical psychologist.

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So it's two years on and I would say I manage a lot better these days and experience symptoms less regularly, after having (mostly) unconsciously adapted my life around things I no longer enjoy and things I can no longer cope with.

I started a small home business in April this year to support myself, making and selling chewable jewellery and other sensory items, which has given me a purpose finally and I'm really proud of it (UK people, please do have a look :D www.sensoryoojamabobs.co.uk)

However, my life is very different to before and I spend a great deal more time on my own and hardly socialise now, because it's often less enjoyable for me now and harder work.

Whenever I do things outside of my normal routine and comfort zone, I tend to struggle. I recently went away with a group of friends to a cottage for a week in Wales and massively struggled, lots of shut downs and exhaustion. At these times I am reminded that I am not better at all, but most of the time I am managing to function, which is great :)

Medical stuff
I finally got a diagnosis in April of this year, having seen a Neuropsychologist on the NHS. She gave me a diagnosis of Functional Cognitive Disorder, which is a new disorder the doctor and her colleagues have defined and are working on being submitted to the DSM, so it's possible it will be an 'official' diagnosis soon.
In the mean time, no-one knows what this means!

In April, this doctor referred me to a a Neuropsychiatrist for specialised CBT and the appointment was in November. This doctor had no idea why I had been referred to her and said she couldn't help me.
She said I needed specialised CBT by someone experienced in head trauma (although she maintains that my problems are psychological...?) and when I asked where I could receive this, she said this service doesn't exist in the NHS and discharged me, so that has been the end of my 'treatment'.

As I have said before, I have long given up on a cure, since no-one knows what's wrong with me and there is no support or treatment, but, I am happy and mostly life is good, something I wasn't sure I could have said 2 years ago.

Legal stuff
For those of you who are interested, my legal stuff has barely proceeded. I'm awaiting a medico-legal appointment with a Neuropsychologist which is likely to be in March/April and then I think it will go to court, as the other side are maintaining that although they are at fault for hitting my car, they say it must have been the first accident which caused my symptoms.

So, still no money from that, no benefits (I was soundly rejected), but my business is just about keeping my head above water, which is something :)

New research?!?
I'm sure you're all well aware of the new evidence into concussions, this has got me very excited, as it fits really well with what has happened to me and my problems.
When do you think it might be possible to get tested for this?!?

http://www.upenn.edu/pennnews/news/m...in-wiring-afte

I hope you are all well, would be lovely to hear how you are all getting on, I'll have a brief trawl of the posts till I'm worn out :)

This SNTF marker sounds interesting. Unfortunately, it only shows up in the first week after the concussion. It would not be worth testing for later than that.

Abbilee, Great to hear you figured out how to move forward with your life, even though it is at a reduced level.

Abbilee,
I'm so glad you checked in. You sound a lot like my daughter...but after 4.5 years we are heading in a much better direction.

She was also told that "it" was in her head. So the one treatment that she has been super diligent is CBT and her psychiatrist is familiar with head injuries.

Last December she had a vestibular test (had to break it into 2 parts) and the testing showed that she has had migraines for 4.5 yrs. her vestibular system was intact. So we are working with Dr Raskin (UCSF) to try to find a medicine that will knock out the migraines. The medication trials are awful because most of the meds make her sick but we are hopeful that we will find something that works. The doctors explained that people can carry a migraine gene and not have headaches until something triggers it. In her case, it was being dropped on the back of her head.

In the mean time, acupuncture helps to reduce her headaches.If we never find a med, she will continue with acupuncture.

Back in April, she got into a study for HBOT in New Orleans. (40 sessions for free). I have read that some people don't have a positive reaction to HBOT...but after a few weeks, she said that she noticed a difference in her fatigue and cognitive ability. The Dr leading the study is Dr Harch in New Orleans. We went through Airbnb for lodging and we were able to get a great price for a room for the 2 months.

Don't give up...my best,