Help! Sorry if this is long!!

[Kayee1]

Hello all. I’m new here although I should have come here many years ago. In 2014 I had a grade 3 sub arachnoid haemorrhage. I had vasospasm after this event which robbed me of my vision. It became double.

It righted itself a few months later though and I was just left with a really irritating stutter. Clocks forward to three months later and my double vision returns with a vengeance! My aneurysm had grown despite the coil treatment I had and I was wheeled in for a craniotomy. This was absolutely horrible. The after effects was completely life changing and I was basically thrown out a few days later and told to get on with it.

I had to learn to dress myself even . I still put clothes on inside out sometimes! My main problems are about working and my impulsivity. Google has been my friend as I’ve had no professional help despite asking constantly. It appears there is no neuro help in my area! I’m in the East Midlands of the UK.

Anyway, to cut a long story short I manage fine at work. I occasionally feel like I’m about to burst into a lot of swear words so I exit to the loo for a breather and then I’m ok again. In my private life I get really fatigued and I can be really impulsive and explosive. How the heck can I get a neuro psychology referral? I really need help! I’m a single mum to a great 16 year old young girl which has been my rock but I feel sometimes she takes on this ‘mother ‘ role to tell me off about stuff I say sometimes. I can understand where she is coming from but surely there has to be somewhere I can get help? I am due to be disciplined at work for messaging a colleague ‘inappropriately ‘ which is ridiculous as she did it too. They say that because I am fine at work I should be fine at all other times.

[Marnie22]

I can strongly recommend the Headway helpline on 0808 800 2244. They are great with all kinds of information and advice plus general support.

I got a referral to neuropsychology two years after my brain injury. I had a GP who was nice enough but never helped me with anything - I had no assessments/support at all following my injury, (which happened in hospital ) I went to see a different doctor in the same practice and got my referral. The difference in how the new GP treated me was dramatic. The neuropsychologist diagnosed me with Post Traumatic Stress Disorder, then my new GP referred me to have EMDR. That has been going brilliantly and has changed my life.

My new GP also got me referred to Neurological rehabilitation and I am awaiting appointments with occupational therapy, ENT and speech and language therapy through that. If you can't find a sympathetic GP in your own practice, you could consider changing GP practices, although that's a bit more drastic.

I do think the Headway helpline will be able to help.

Very best wishes. 🙂🌸

[Kayee1 in reply to Marnie22]

I did use the helpline but they said they couldn’t help regarding the neuro psychologist sadly 😢

[Marnie22 in reply to Kayee1]

That seems odd. What does your doctor say exactly?

[Kayee1 in reply to Marnie22]

She referred me to the neuro psychologist and they gave me an appointment. It was over the phone because of this darn virus. The day of the appointment they rang me and said I was ‘out of area’ and refused to see me. I was waiting months for that appointment too. They had sat on it knowing I was out of area and did that to me! So now the referral has gone back to my GP to sort out. It’s so frustrating! So now I will be awaiting another appointment for yet another few months. I’ve looked at private psychology but I am looking at over a grand to pay for it which is unaffordable for me 😞

[Marnie22 in reply to Kayee1]

That's dreadful. I can understand why you are so frustrated. The 'out of area' thing is just ridiculous. I get really mad when people don't do their jobs properly and then it affects other people's lives so seriously.

I do hope you find some proper support, you shouldn't have to fight to get help.

🤔🌸

[Kayee1 in reply to Marnie22]

It really is exasperating and because it’s so complicated I tend to get too overwhelmed with it all. My anxiety is through the roof too which was never an issue with the old me. I miss the old me. She never got upset or angry very much ☹️

[Marnie22 in reply to Kayee1]

Please note- possible trigger warning.

I know the frustration of finding that parts of your personality and how you respond to things have changed. I used to be really patient and empathetic and I am neither of those things now. It feels like someone stole part of who I used to be.

I don't know if this is of any use, but under the mental health act, mental health services are supposed to provide services for people with brain injuries who have been affected by a change in their personalities. I was under my local mental health team at the time of my brain injury and I did ask them for help. Their response was worse than useless - I was discharged without being told , shortly after I had told a psychiatrist that I was having suicidal thoughts. But it might be better in your area, so I just thought I'd mention it.

The other thing I wondered was if there is an occupational health consultant connected to where you work. If there is, it might be something to investigate.

🙄🌸

[Kayee1 in reply to Marnie22]

You wouldn’t believe it but I actually work for mental health services. They are not in the least sympathetic towards me and are actually denying I have a brain injury just because it’s not been concretely diagnosed. I can tell I’m hugely different than before my haemorrhage and surgery. They knew I had this happen in 2014 and they knew my sight problems. The rest has manifested and I’ve dealt with it as and when. Google helped me loads and the Headway fact sheets. My colleague has nastily copies my messages and given to managers as a way to get at me because I didn’t want her friendship any longer. The messages are really scathing of some people and aren’t very nice but that’s what I’m like when I’m tired after a long day at work. They are wanting me sacked end of ☹️

[Marnie22 in reply to Kayee1]

Your reply doesn't actually shock me, but it does sadden me greatly I was working for a charity when I got my brain injury. My boss was a psychologist. He was dreadful to me, not believing me about my injury, shouting at me and giving no support whatsoever. It's dreadful when people who should know better just don't. Like you, I didn't get a proper diagnosis - my injury was caused by a surgeon who chose not to follow the correct procedures during a minor operation. He then lied about what happened on my discharge notes and so the doctors I saw subsequently thought I was making up my difficulties or that it was a mental health thing. I only found out the full truth after accessing my medical records.

🤔🌸

[Kayee1 in reply to Marnie22]

Oh my word! You’ve been through so much! It’s disgusting about your psychologist boss too! My managers are all mental health professionals and should know better. I’m dismayed by their lack of knowledge let alone sympathy.

[Marnie22 in reply to Kayee1]

Yes, I really find it puzzling that supposedly intelligent people who should be compassionate in order to do the jobs that they are in, actually turn out to be hard-hearted, suspicious and callous. 🙄🌸

[Kayee1 in reply to Marnie22]

It makes you wonder what they are like with their patients. 😡 At the end of the day, if an employer wants to get rid they will get rid, even of it means using lies and cover ups which is what they are doing to me unfortunately

[Marnie22 in reply to Kayee1]

Yes, it's just horrible. I don't suppose you're in a union?

[Kayee1 in reply to Marnie22]

No unfortunately. I’ve had to pay for a solicitor which has broken me.

[sospan]

Hi,

Wow, quite impressed how much you have managed to achieve by yourself over the last 6 years and to steer your young lady through those difficult years - I had two girls and two boys so I have know what you may have gone through. And you won't be the first mum (or father) to be admonished by their kids over what they say

So the question is what you would you want out of neuro psychology session ?

At the moment you have discovered the ideal approach to difficult situations - remove yourself from it and vent in private. Which is what the specialists would probably advise.

In terms of fatigue, there is the sometimes less that useful advice about resting and taking frequent breaks. Which is fine, if you aren't working or have a busy household.

What I would suggest is asking your GP for a detailed blood test. Where they check the hormone and mineral levels. What happens to both males and females after a head injury is that the injury can cause a hormone imbalance which can cause fatigue and mood swings (up and down). Sometimes any imbalance can be resolved with a patch, a course of tablets etc. If you can rule this out then have a discussion with the GP about a Neuro Psych referral.

Secondly it may sound strange, but talk to the disability employment officer in the JobCentre. They will help in the relationship between yourself and your employer. They may request your employer gives you more latitude in behaviour, working hours etc.

I wouldn't be so hard on yourself, you have done incredibly well on your journey so far.

[philcollis]

Have you contacted Social Services? You can request an assessment to see what support needs both you and your daughter might need. I would suggest you contact disabilityrights.org they have advisors who may be able to give you some independent advice to address your support needs at home and work. Suggest you contact Disability Rights before you contact Social Services to advise on the process ....hope that it helps. Good luck ....I'm 45 years post SAH so stick with it ....there will be good and bad times but giving up is never an option

[Kayee1]

Thank you so much for your advice. I have been placed into a situation without any help and I did try my best when I got out of hospital after my craniotomy which includes social services. Their well being team were a joke. They told me to go down the stairs on my bum because of my double vision lol. They then left and haven’t been in touch since!

My daughter had to take the burden which I am really proud of her for. Now she is 16 so all she has to do is be my memory sometimes and she corrects me ( or rather she scathingly tells me off!) for things I say which are out of turn.

I don’t get why my employer isn’t listening to me about my brain problems but I don’t have them on paper from a specialist. All I have is my medical history. A neuro psychologist appointment would be a good stride forward so I can tell my employer exactly what my issues are. I know the issues but of course I need proof. They aren’t the nicest of people my managers. I work for the NHS too which is all the more galling ☹️