functional cognitive symptoms???

[Teazymaid]

I’ve recently had tests done from a neuropsychologist which took about 2 hours and I was exhausted .. then I got the reading from the Dr and was told my readings seemed all over the place so no one area .. she was very nice and thought it could be “functional cognitive system “ was what she advised me to read from Neurosymptoms.org

I have read it but a lot doesn’t seem to relate to me or how I’ve been in the last four years .. I know my stress levels have been thought the roof fighting PIP tribunal and unfortunately I’m my husband and emotional support is not so good so I feel like I’m crashing even more ..🥴 any advice on test that others have had done would be appreciated as I’m lost at the mo .. Sue 🤔

[James1984]

Hi Sue,

Everyone with a brain injury is going to have their Autonomic System impacted. The ANS is the nervous system that goes from the brain to our organs and regulates involuntary responses such as heart rate, blood pressure, respiration, digestion etc. The Sympathetic Nervous System (SNS), which is part of the overall ANS, enables the body to handle stressors via the 'fight or flight' response. This reaction primarily regulates blood vessels. Vessels are in a state of continuous activity, and in most cases, an increase in sympathetic signals leads to constriction of blood vessels, hence blood flow is slowed or blocked.

The more stressed you are, not only are you fatigued, but the more your ANS is impacted. Your brain sends the wrong signal for your body function and your body responds with the wrong output, hence your body is constantly stuck in this loop of dysregulation.........until you rest and recuperate.

So, not only are your brain-cells damaged, which your body may or may not have created longer, more 'energy-intensive' pathways, but the blood-flow and oxygen to your brain is also impaired.

Your results are absolutely a reflection of the dysregulation your body is going through, and this needs to be presented to your Neurologist for an example of what's happening to you.

I had a look at the website you posted, and just keep in mind I'm just an outsider of the medical-profession looking in, but I just didn't agree with a lot of what was said. It speaks of 'hardware' and 'software' issues and then subdivides it into different areas. For starters, it's not difficult to classify whether it a hardware or software issue. Software issues are 'trauma-based', but if you have had a hardware issue like a stroke then the area of damage to your brain is going to correspond to issues with particular areas of your body. As far as I know, all of us brain injury survivors have cognitive issues (that may or may not show upon a MRI Brain scan), it's just how it is, and I think that can be substantiated by the fact that the ANS plays such an important role in maintaining blood-flow and instructions to our body that we inevitably have various issues that flare-up particularly under stress and fatigue, and when the damaged areas of our brain are 'under load' trying to keep up.

I guess it really depends on the Neurologist making a decision with regards to how your brain was damaged and how your testing results reflect that. If they didn't support that then I would be getting my ANS tested to prove there were issues with my body.

Keep a diary and document everything about your symptoms and when they occur. Not only will it be helpful to medical professionals but I'm sure it would be supportive of your claim in the tribunal.

[Teazymaid in reply to James1984]

Thank you James .. it wasn’t until I came home and started to read the article I realised that some of what she said was true like the stress levels making it worse but without a doubt my memory problems were here from the start and I have worked hard with doing cognitive therapy like books , games , reading , singing .. not giving up at all .. when I said I use a diary she said she hat this could actually make my memory worse as it will rely on this .. the truth is as I do daily try to remember what I’m doing before I check my diary .. but without this diary , alarms when cooking etc I wouldn’t be able to leave the house as nothing would be remembered ..

the biggest problem is there is no way of telling the Drs just how complex life is ..

on a plus note I did win my tribunal but emotional I’m broken .. the process of the 13 months and the court hearing as destroyed me .. I don’t have enough time to explain all to Drs , the health benefit system are not educated in Brain injuries and family don’t have the time to even listen to me .. or do listen and don’t remember .. ..

I know I sound so sorry for myself but this has to be the worse part of your body to injure .. Sue 😢

[James1984 in reply to Teazymaid]

I'm sorry to hear that you're feeling broken Sue. It won't last forever though and I'm sure you will get past this trauma.

I think that's pretty silly of your Neuropsychologist to say that keeping a diary would make your memory issues worse. I think it's a glaring example to consider getting a second opinion.

As the saying goes, we don't get to choose our family. But we are here to listen and understand when you feel like a chat Sue.

[Graceissufficient in reply to James1984]

That's a beautifully clear explanation.

[Teazymaid]

thank you James . I’m always saying this is the best place for me .. what’s your thoughts on working very hard to improve your brain and at times failing which is what I have done or sit back and except that the brain will get better on its own like not using diary or timers as this causes stress trying to hard 🤔 I do understand this but for me doing nothing would have a much bigger impact then failing .. what’s your thoughts ? 🤔 Sue

[James1984 in reply to Teazymaid]

It's a bit of both in my experience. I have had a lot of improvement since my injury, but at the same time I've had to learn to accept my limitations and make clear boundaries with other people about what I can and can't do.

Rest, nutrition, and exercise is especially important if you've had a brain injury. You need to keep an optimistic outlook so that you don't fall into self-pity too much, but at the same time practice self-care as others do not always understand what we're going through.

I LOVE doing puzzles and playing games, and apparently it is very good for your brain and aids in recovery.

I think it's a great idea to keep a diary/timers/other aids to take the additional stress off your brain so that you experience less fatigue.

[Teazymaid in reply to James1984]

Thank you ,,, I think you have taken the road that I need to learn to take .. I am in self pity from repeatedly trying to be the old me and this new me just can’t do it .. I have been in denial up until last year and the last 12 months has emotionally broken me . Wanting medical help to know what has happen to me and that I’m not going crazy . I’ve wanted my husband to understand but he can’t . I’ve wanted to not feel alone and this is the only place I don’t feel alone . Once again thank you for your kind words .. Sue.

[Nafnaf87]

Good morning Teazymaid

I went for one of those at Walton about 25 years ago (was actually on behalf of Barclays who really didn't want to pay out a small critical illness policy). Took a couple of hours and absolutely wiped me out. Afterwards got interviewed by a very eminent brain chappy, I told him I knew why I was there but, please, I just need some help. He just patted me on the back and said "there, there, you'll be alright".

All these years on I am still getting there rather slowly but I am getting there. Most things, let's face it LIFE, which take any thought require huge amounts of effort and I'm still very slow.

Whatever, it's better than the alternative

Best wishes

Michael

[Graceissufficient]

Doctors openly admit they understand very little about the brain. They're about where they were on blood and circulation inC17.

The dr's well meant diary comment was clueless because she hasn't the lived experience. Your knowledge of yourself is correct. The record function on all our minds here has been damaged - in different areas probably.

I read a v interesting summary on PCS recently by a specialist. He said that a lot of the memory issues in mild concussion (clearly yours isn't mild) are actually problems with attention. That's probably true of me. I have always had a loud and busy internal voice, and have always been absent minded as a result, )though sadly not a professor). It's much worse since the MTBI. The ice cream I find a day later in the microwave - I was probably distracted and in thinking mode. I am trying to be more present in the minute on routine tasks.

Don't despair. You are worn out from the PIP effort - you need to allow yourself a long rest to get over that.

[Teazymaid]

thank you ❤️

[WonderingWanda]

after my set of tests I was told I had most likely a Functional Brain Disorder. I also had got upset as some of the tests that I know I would have previously sailed through were a real struggle and it made me realise just how bad some of my higher functioning had become. This was interpreted as additional anxiety disorder ; which frankly annoyed me when I read it!! Who wouldn’t be distressed finding out you had the memory of a distracted chimp!?

Anyway, that aside I was advised to seek a neuropsychiatric opinion, due in a few weeks

As far as I understand it the brain looks normal but isn’t working on all cylinders so it’s described as a functional disorder. I think they now want to see if anything can be done about it. I have done all the rehab I can and continue to do it. It’s not anything more than a label. People with ADHD or acquired movement disorders are also classed as a functional disorder.

The pathways that the nerves take have been jiggled up but are still there and with no visible scarring on the brain I thinks it’s an umbrella term they use.

[Teazymaid]

it hasn’t helped here all of this as I even have scarring on the brain and because my readings are not good in lots of places yet ok in others she said functional . it really is a joke how they have no idea about how it feels on this side of the fence and what they are saying isn’t what you are experiencing .. mind you I’m not very good at explaining how it is or remembering what I want to say .. got to work on my mental health as it is struggling with even more in known .. but your reply did make me smile Sue