So since last writing my previous post my Son has been experiencing “cluster seizures” - whereby he goes into a trance like state, talks gibberish and he can’t remember events and has no memory of what has happened. He has had approximately 3 or 4 of these “events” between May and December. The December one was the worst and we had him come and stay with Us for the whole month as we were so worried about him. He had gotten himself up in the middle of the night, and gotten himself up and dressed for work. He had boarded a train to London to take himself to the Office and only realised when he was halfway through the journey that he does not have an office in London anymore. Thankfully he managed to get himself back home safely to his flat where he then called us in distress. 111 told us to take him to A&E straight away, which we did. They wanted to admit him for tests and brain scan but because my Son had only just started a new job, he refused to stay. We had a pre-booked telephone consultation booked with a private neurologist, because we had already taken him to neurologist for tests/advice and were awaiting the results of EEG that he had had a few weeks earlier. It’s a sorry state of affairs that we can’t get him by NHS, even though he was an inpatient at Kings for 3 months after his accident. Neurologist put him on a 4 day course of treatment ( not really sure what the medication was) and has upped his sodium valproate. My Son remained with us over the Christmas and New Year period so that we could keep an eye on him, just in case he had anymore episodes. It seems like stress and excessive drinking seems to be linked to these episodes, so we have tried to keep him stress free and he has significantly reduced his alcohol intake. He returned to his flat the first week of January when he returned to work; he works from home. He is looking and feeling a bit better but obviously we are still worried about him, but check in on him each day to make sure he is alright. Today we received a call from him - we are currently away in Mexico for a wedding. He is in a terrible state because he has received a letter telling him that he is being charged with criminal assault and has to appear in court at beginning of February. This relates back to my prior post where he was arrested and held overnight in a cell after getting arrested for being drunk and disorderly. He has no recollection of what happened that night and is really terrified of going to court and is so, so stressed. I’m so worried that the stress is going to bring on one of these episodes whilst he is on his own. His brother is away as well atm and he has told me not to contact any of his friends as he will be “fine”. Please can someone give us some advice on what we need to do in preparation for this court hearing. He doesn’t carry a brain injury card although the police were aware that he had a TBI because they had to come to our house to get his medication. He is normally of good character, and has no criminal record, is in full time employment as a professional within the IT industry. He is divorced with one child for whom he makes CMS payments. He’s a good man, but this TBI has affected his personality and drink and recreational drugs do not help. Any advice would be greatly appreciated please.
Desperately need help pls: So since last writing my... - Headway
Desperately need help pls
Dear Lisa, My heart goes out to you. In addition, it is wonderful how supportive you and your husband are and how much your son trusts and accepts your support.
It seems like your top need right now is for legal advice. I imagine that some people on this site might have some relevant personal experience to share. (I do not.) Forgive me if you have already done so, but I will venture to say that you need an expert solicitor to ensure that your son gets solid advice re how to manage himself and the process. I mention this because having that kind of expert guidance from someone who has handled cases like his will do the most to reduce his stress, and yours.
I wish you all the best.
Taia
Hi LisamarshI am in Canada and go to a program here for people with brain injury. I do not have the issues your son has - I do a group program here and have for years , and I have heard others talk about it and what they did.
What you have described is not at all unusual.
I can only give some possible ideas based what I have hear goes on here, which may help you when you get back and talk to Headway or a near by brain injury society or the police. It may be different though you will know what you might ask.
Here you can, with the help of your family and a doctor, make yourself known to police so that if something happens a file with relevant information comes up for the police- it can contain info about the injury, things that are likely to trigger , who doctor is, etc. The outcome then usually becomes a trip to the hospital rather than jail. However charges can still be laid, though generally they don't seem to be - it seems once the police explain its a medical issue to others, it seems to usually smooth out.
Your son must stop drinking - no amount is a good idea for him. People with brain injury can get an alcoholic black out on a tiny amount of beer - some brains don't handle alcohol well. Getting him to comply is maybe not going to be so easy.
One fellow here seems like the nicest guy in the world and on half a can of beer he has fallen and ended up in hospital with injury to himself, acted in a threatening manner ro others who got scared and called the police - had one incident he was to embarrassed to relate but the police did a serious safety check on his most adored wife and he got put into a program at the hospital pretty much immediately. He knows he can't drink . He went for years with out drinking and then thought he was better and it would be ok. It wasn't. And, once he started again he had a time quitting. Oh, and the police had him flagged in their database so if he came up they knew what the best way to deal with him was.
In the program he did they evaluated his stressor and his life and basically got him doing things that he could do that would keep him as stress-free as possible and away from the booze. He does a lot if volunteer work and also is in a special program where he has access to a team of docs.
Please do call Headway and explain what has happened so they can tell you where he can go and what resources there are. Where I live it is my local brain injury association who has provided me a card that explains I have a brain injury and what symptoms they may see that might be mistaken for something else. The police in my area know the society issues them and they have some meaning over and above what someone randomly printed in their basement. In otherwords, they have some weight.
Both gentlemen who had big issues with this ended up being monitored by a hospital team where they went to a program for awhile and the team figured out what they could and couldn't do, stressors to avoid, a medication program, etc etc.
I will say again, Headway is a place that is great to talk to as they will.have ideas relevant to where you are.
I also did find this link put together by UK solicitors:
braininjurygroup.co.uk/livi...
I have found it pays off to look for professionals who are brain injury literate.
You, and he, should also take steps to protect his interests should he be unable to return to work for a bit or tor some unknown time period.
Your son also needs to understand he should not refuse treatment. When they took hi. To a&e he missed his shot at getting.them to investigate, by the sounds of it.
Is there something that can be done about that, I don't know, but Headway might.
Please call them. You need their help managing this situation as it is complicated.
Really, a neuropsychiayrist assessment sounds like the thing to me though I would imagine they are mostly in the hospital system these days.
I know this is likely not in your geographical area but they may know who is:
swlstg.nhs.uk/our-services/...
Also please don't misunderstand what a neuropsychiayrist is. They train as an MD, then a psychiatrist, and then in brain issues. This is why when they say someone has a brain injury and not a psychiatric disorder their assessment carries clout. And, people with brain injuries don't do well if treated as if they had a mental health issue. Having such a doc in your corner is helpful in many ways.
Basically you just have to keep phoning around.
Also recognize that neurologists usually only are looking at more evident injuries such as fractures and brain bleeds - once physically things look OK to them they are out of their wheelhouse - however, you may be able to get one to refer you to a neuropsychaoyrist.
Yes, people with brain injuries do tend to have a rough time getting help. Even though brain injury is common it is not well understood and insurance co's like it lumped with psychiatric disorders because they don't have to pay so much.
You are going to have to pound the pavement and be very determined and just keep going.
You also can ask Headway for family support and where you can educate yourself as understanding tbi is going to help you, and your son, a lot.
Keep us posted. And breathe. This is a marathon.
Leaf
Hi Lisamarsh
Sorry to read how difficult life is for your son & you. I am unable to give any advice but would like to give you a virtual hug and support.
I have read many posts on here since I joined three years ago after my then 38 year old son suffered a severe brain injury after a cardiac arrest. Over this time it is very apparent there is insufficient ongoing medical help given. So many people and their families going through ‘hell’ every day because of this. No magic answer to this one unfortunately but hopefully more research and resources into brain injuries will happen in the future. In the mean time this site can help in so many other ways.
Very best wishes to your son Lisa, you & your family.Take care. Nanapal. x
WOW! Right! As an ex-cop with a TBI. All I can say is the court will need to see that his mental capacity is severely lacking for any of this to be seen lightly. There will be questions in relation to why he isn't getting treatment for any behavioural issues & self medicating with alcohol & drugs also needs to be dealt with.
I self medicated with alcohol for sometime due to the fact that I was not willing to accept my mental & physical differences after my TBI. Unfortunately a huge identity crisis occurs & Unfortunately, us men hide our truth rather than accept & talk.
He will have to face his actions & tell his truth of where he is at & hope the consequences are not too harsh. It's now time to shake himself & wake himself to change.
Sounds harsh, however outside people are being harmed because of not facing the facts that he needs to behave differently. Addictions are a result of trauma & losing himself in a cocktail of TBI & chemical toxicity is self destructive.
He needs some self love & a therapeutic system in life to help cultivate this new approach. Alcohol has to go!
Thank you Tony for your advice - much appreciated
Hello take a look at the link. This is me doing a random EFT session. I can shape sessions relating to all areas & TBI has been my own self target. Try it & see what you think. If your son would like to try a session with me on a zoom link I would love to offer a session to see if it helps him. A no harm experiment for him to try something new that can help him create his own grounding system for maintenance of how he feels.
Regards
Tony Murray
Morning Tony - thanks for reaching out again. I will get my Son to take a look. Also was wondering if you can offer me some advice. We’re back home from Mexico now and I need to find a solicitor asap for his court hearing next week. He’s been issued with a Notice of Criminal Charge - do I need to look for a criminal lawyer or a mental health accredited one due to TBI?
Hello, urgent move would be to speak to Headway! He needs to get his 'brain injury identity card.' ASAP!
Their helpline is 0808 800 2244 (9am -5pm)
On my card is a number for 24 hour legal assistance.
0800 140 4031
Headway may have further links.
Thank you I’ll call headway now
I am so sorry to read your post .it breaks my heard the lack of help within the nhs and hope others on here can help with some good advice .. please contact headways as I’m sure they will be to advise you aswell .. sue x
Hi,
This is my first post on here. Aside from my own neurological issues, my son has suffered from epilepsy for over 20 years. His are the full on tonic clonic fall to the ground with convulsions type. It's such a worry when they're not close and you're concerned they might have a seisure. Hopefully they will be able to control your son's in time. Sodium valproate works well for my son and for my friend's son who occasionally has vacant seisures. The alcohol is going to be a trigger for your son's seisures. I appreciate it's not going to be easy getting your son off the booze, but it's great that he shares with you and hopefully listens. Am wishing you all the best
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