Am I too late?

[Mike442]

I’ve recently had to come off work sick, I’ve never been off before and have had 100% attendance through school and my working life.

I’m off because of anxiety and worst of all, panic attacks. As far as I can remember, I’ve always been anxious and certain situations made me panic. I assumed I’d adapt and get over my symptoms in time and with experience, but that hasn’t happened. My symptoms have gotten worse as I’ve gotten older, panic attacks happen for no apparent reason, and they’re so bad now that I cannot function and have had to come off work as I said earlier.

I have a whole host of symptoms and behaviours so I won’t get into them here as I’d be typing all night. But in summary, I’ve blamed my symptoms on a lot of things, such as diet or unbalanced hormones, and I’ve researched endlessly and tried a million different things to try and ‘fix’ myself for over a decade (the amount of money I’ve spent on loads of different supplements is embarrassing). Again I won’t get too much into that either because the list is so long.

I didn’t tell people about my symptoms as I don’t want to be a bother, and I didn’t go to the GP because those settings are one of the things that set my panic attacks off - I’m afraid of hospital etc.. for some reason - I don’t know why.

But after 3 of the worst panic attacks I’ve ever had 3 days in a row, I realised that I need help and that I’ll never figure out what is wrong with me on my own. So I rang the GP on the 3rd day, and called my parents to ask if I could stay over the night, and I told them what has been happening.

Since then I’ve been through talking therapy, which wasn’t getting through to me (I already know what is happening to me during my panics because I’ve been researching for so long on my own - I know it’s the fight or flight response - but how do pull myself out of this response when I know logically that I’m not in danger). I’ve been on anti-depressants which do not work, and I’ve been referred for a sleep analysis and autism/adhd assessment.

When I first seen the GP, I didn’t bring this up, as it’s something I’ve never been able to bring myself to discuss. I can’t describe the way it makes me feel to think about it, even though I don’t remember the actual event. 16 years ago when I was 12, I climbed onto a barn roof to retrieve my football, I stepped on a skylight that I didn’t see and fell through it onto concrete - my father says it was about 15 feet. My back landed on a breeze block and the back of my head struck the ground. I’m sure people on here will already be able to piece together a picture and fill in the tiny details, so I’ll skip forward in time.

I don’t remember any of this, and haven’t been able to speak about it until now. The reason I’ve decided to speak about it now is because I feel like this is the last thing that I can blame my symptoms on.

I phoned the Headway helpline first, to ask about head injuries and the effects. The lady I spoke to was really nice. I was on the phone for long time asking a lot of questions, as I have no idea about head injuries even though I’ve had one. The lady said that my symptoms are commonly reported after head injuries, and are sometimes mistaken for autism, which I have been referred to be assessed for. So she said it might be a good idea to bring this up with the GP, and she recommended referrals that I could ask for - such as a neuropsychologist and endocrinologist (because I’ve had private blood tests in the past and my cortisol was very high).

The lady also said that I could request my medical history to learn more about what happened to me, which I’ve done. It wasn’t nice to read about, and I don’t fully understand what some of it means. From what I can make out, I had the following:

Traumatic head injury

Significant left occipital skill fracture

Petrous bone fracture (C5)

Right frontal subdural heamatoma

Moderate brain swelling

Large basal skull fracture

Right sided cerebral oedema

I’m not sure if these are all different things, or if some are the same thing and different doctors have used different terminology (which I suspect is the case from what I can gather from google). I’ve also always had a numb left hip and the range of motion in my left shoulder is more limited than my right - and according to my report I had significant bruising down the left side of my back - so I’m assuming I can attribute those physical problems to the fall.

I was discharged from the intensive care unit after 6 days, with a planned follow up with the neurosurgeons 5 to 6 weeks later. My report says that they were happy with my progress after this follow up and didn’t plan any further follow ups. Since then I haven’t had any check ups and I refused to talk about the incident.

Since I’ve seen the GP again I’ve been referred to a neuropsychologist, and I’m awaiting another blood test result.

This has been the most confusing thing I’ve ever gone through. Because it’s taken so long for me to face this, I have no idea how severe my fall was, and I don’t know if there were any consequences of it. On phone with Headway, I was referring to my fall as a head injury, and after reading my record, my primary diagnosis was a ‘traumatic head injury’. When lady on the phone mentioned about the brain injury identity card (since I was talking about how I’m struggling to explain to people what I’m going through) - I said that I haven’t had a brain injury I’ve had a head injury - she responded that my brain bled and was swollen - I’ve had a brain injury - and head injury and brain injury are interchangeable. The GP and neuropsychologist said the same thing, and when I google ‘traumatic head injury’, it just comes up with topics about ‘traumatic brain injury’. Have I been living this whole time with a brain injury, and didn’t allow myself to know about it?

I’ve realised I’ve done a classic me and lost sight of what I was supposed to be talking about, but basically I’d just like to hear what others have been through and what people can tell me about my fall (not to compare injuries, but so that I can get a better understanding of what happened to me), and because it was 16 years ago, is it too late to find proper help. Are people suffering from the same problems that I am?

Thanks in advance, I’m sorry it’s such as long post, I hope people can take the time to read it through though - also I’ve probably made a lot of grammar and spelling mistakes - sorry about that

[Pairofboots]

Hi Mike, it's never too late to seek help, it will be a step forward. Just be realistic, everything in the brain injury world is one step forward with the odd stumble. Much does come down to the skill and knowledge of those providing the service, and the relationship that is formed. Good luck 🍀

[Mike442 in reply to Pairofboots]

Thank you, yeah it’s just waiting game now until my referrals come around - once I know what’s wrong with me I’ll be in a better position to fix it

[cat3]

It isn't too late Mike ; just a shame you've struggled with brain injury, without an official diagnosis, for all those years. But you've put measures in place at last, and though it'll take time, a neuropsychologist can explain the cause & effects of your injury and work with you to start regaining control of your issues.

We try to hide panic attacks because they're dismissed, by some, as either hystrionics or just weakness. They're actually out-of-the-blue attacks of the worst imaginable terror and physical incapacity. But they do have a cause and their effects can be managed, with patience and practice.

Stay around m'love and keep talking with us as you head towards better understanding, and management, of brain injury....

All best wishes, Cat. 🌈

[Mike442 in reply to cat3]

Thanks - if I do technically have a brain injury (which I don’t want to say I have because the GP hasn’t confirmed or denied yet) - it would’ve been good know from the start and easier to explain to people why I am the way I am - I was only seen once after my fall and I don’t even recall that - but it’s no one else’s fault that I didn’t know - I decided to go onto that roof, and it was me who couldn’t bring myself to talk about what happened

Thanks for the nice message, I will be sticking around to learn more about head injuries etc and hear people’s stories

[cat3 in reply to Mike442]

Did you have an MRi scan after the fall Mike ? If you did, it will show on your history. If you didn't then your GP could refer you for one to get things underway.

I'm sure you were traumatized by the accident, but it's a shame you felt unable to talk freely about it afterwards. You were just a kid trying to retrieve his football ; many of us did risky stuff as kids, but most were lucky enough to skip the consequences...

[Mike442 in reply to cat3]

I did according to my report, but there were no images on the report I was given, the neuropsychologist said the images are on a different system - I would like to have another scan just to see if there has been lasting damage

[cat3 in reply to Mike442]

If your scans aren't available, ask your GP to refer you for another (asap to allow for waiting times). If no joy then wait 'til you see the neuropsychologist and tell them you need visible, up-to-date, clarification on your injuries before you can move on.... 🤔 x

[Mike442 in reply to cat3]

that’s such as good way to word it, asking for a scan so I can move on, I feel like I’m begging or being rude asking for things when I’m at the gp but that’s a really good sounding way to phrase it - I will ask when I’m there to get the results back from my blood test - if the waiting times are bad, someone has just posted about private work which I can look into

[cat3 in reply to Mike442]

👍x

[Teazymaid]

hi Mike .. you definitely had a TBI ( traumatic brain injury) your injuries in the head bit are very similar to mine , several bleeds , bruising, swelling and broke c5 & c6 alone with shoulder and leg injuries .. everything you have written is classic TBI problems which you have lived with without care and support .. unfortunately this seems to be the normal as I had help with shoulders and operations but my head was very little help although I did ask about the long list of things nothing was done and rehab was barely visible because I was determined to get as well as I could and did everything I could to improve how I was as pre accident I made worked as a support worker with a guy with brain injuries so I has knowledge in my old brain that I never forgot .

As you say it’s all to long to go into 😊 but I’m over 3 years past accident and still having problems and again on waiting lists but u have paid private to help me actually deal with the new me … looks like I will be paying again as the NHS don’t have the ability to help ..

in a more positive note please talk to you DR about everything , also friends and family . You have to address the issues to make them better and this really does work ( I was also a mental health support worker pre accident)

Try reading The Chimp Paradox .. amazing book that agin will help

With recognition , information, understanding, knowledge and support from the NHS ( something we all need ) we will all feel so much better as the impact on our mental health is huge after aTBI … I’m very much struggling and it is having a huge effect on my mental health which is why I am going private where I can as this information I need to move forward with my rehab and possibly accepting the new me ( as I like to put it )

You have definitely come to the right place . This site has kept me going 😊 … all of what you are saying is definitely not to late to change how you are feeling … put you will have to start talking 😁.. even if it is on here to start you off 😁 … please try the CHimp Paradox as what you will learn from this could change your life if you work at what is written .. 👍 keep chatting or moaning as we do frequently and welcome to a very special group 🤪 Sue x

[Mike442 in reply to Teazymaid]

Thanks sue, I’ve been thinking of looking into what I can do privately, the waiting around for the nhs is the worst part at the moment - it’s also hard to get a straight answer I’ve found - almost like people don’t want me to know for sure

I like a good read so I’ll look at that book

Thanks for the reply 😊

[JPBeeves]

I’m sorry for you to experience all this for so long, Please ask your GP for an MRI scan, Try writing down how you feel and what you are feeling, try bullet points if this helps.this will help you and medical staff to understand what is going on

[Ideogram in reply to JPBeeves]

I agree with this.

If you feel able, write down bullet points of the symptoms you want your Dr to be aware of, and your questions or anything you want them to do. You can write it out a couple of times if it helps you get clear. I've found this really helpful in making sure I remember what I wanted to cover when the GP appointment comes round.

Eg: - brain injury on X date - hospital said this - now have these symptoms - autism referral - could this actually be from brain injury? If so, what happens next? Can I get an MRI please? (Or whatever.)

Also, if you feel nervous talking about this, you can just hand the piece of paper to your Dr and say it was easier to explain it written down. My Dr seems to find this helpful too.

Best of luck.

[Seamus1967]

Hi Mike.

I'm 56 years old. At 15 1/2 years old I had an accident and was unconscious for around 20hrs. I woke up the next day, seemed fine & was discharged.

Before the accident I was a bit if a geek; obsessed with astronomy & computers.

After the accident I lost all interest in these things. I started talking to my parents in very disrespectful way (putting it mildly), became very anti authority (fights with the police etc) and got involved people I would have had no interest in before the accident.

These changes were put down to adolescence by my parents & myself. So you just accept that & move on.

Fast forward to 8 years ago and my short term memory starts to faulter, I get problems with concentrating, panic attacks, depression etc.. I had a great support worker at the time (for something else) & they took me to the mental health clinic.

I had CT & MRI scans & three one hour sessions with a neuro person who concluded I'd damaged my frontal lobe (as well as damage to another part that showed up on the scan) originally & that brain shrinkage later in life has brought out more symptoms.

Since those conversations I've been able to reduce the anxiety alot. It's as if I have more control over it.

So now when I go to the shop & I get brain fog I know it doesn't need to be followed by a panic attack. It is brain fog, it is not my world ending (if that makes sense).

Now I look back on my life & can see just how much this injury has affected my adult life. Its ruined many of my family relationships, parents, sisters, daughter. I've lost touch with most of my old friends.

It's not all bad though, I've done things in life that I wouldn't have had the bottle to do without the brain injury.

Good luck!

Jim

[Mike442 in reply to Seamus1967]

hi seamus I’m glad you replied, I changed after my fall, I wasn’t nice to my parents and it was put down to puberty - I don’t recall much but from what I do remember and what people have told me - I was like a totally different person for years

I was hoping for a scan too but it sounds like I won’t be getting one from what the doctors are saying

Thanks for the reply 👌

[Teazymaid]

I’ve just paid £280 to see a neurologist and he said I needed a MRI of head and neck , to see a neuropsychologist and balance physio . I decided to pay privet forMRI which is tomorrow £650 🥴and although the neurologist asked my Dr to refer me to the other two I have seen that the neuropsychologist has said they won’t be seeing me as they are to busy and asked for me to be referred to the stroke rehab .🥴. physio has already made an appointment 👍. The whole system is beyond belief .. I will keep you posted to where I go from here ..

Im not surprised how badly this will have affected both of your adolescence .. I was only saying to my husband about you ( hope you don’t mind ) but after having 4 sons and know how bad they got for you both to have has injuries at this time of your life must have been hell .. I was 54 when I fell 10/12 ft on my head and my aggression is horrendous .. and I’m anti violence at all levels and there really is no off twitch . But I am working very head to start to control this .. that’s where the book has been read again . Take care as this will improve .Sue x

[Mike442 in reply to Teazymaid]

do you mind me asking which company you are having the mri through? Yes do keep me posted, and no I don’t mind about that, and also good luck tomorrow

[Teazymaid in reply to Mike442]

It was at the Duchy Hospital Truro Which I believe is part of the Ramsey Health Care .. unsure what part of the country you are in .. yeah all went well just waiting to hear the results Sue x

[Ideogram]

Hiya. It sounds like you've had a rotten time. Well done for reaching out here, and also talking to Headway.

Others have already given you advice about going to the GP etc. I'll just say one thing - you seem quite nervous about the idea of having a brain injury. I think we've probably all had a period of adjustment to that. For some reason 'brain injury' sounds very sombre and intimidating. But it sounds like you *have* been suffering through serious challenges for a long time.

I've now taken to owning the phrase, because it means people take it more seriously when I tell them what's going on. It's daft really - I am surrounded by people who are always getting all kinds of other body part injuries!

All I'm saying is that there is absolutely no shame in this at all.

I hope you can get some help soon.

Best of luck.

[Mike442 in reply to Ideogram]

Thank you, I am nervous, brain injury sounds a lot different to head injury. The primary diagnosis on my record is ‘traumatic head injury’, not brain injury. With the way my mind works - I’m not going to say that I have a brain injury until the GP or someone professional confirms it, I don’t want to be a fraud and claim I have a brain injury when I don’t.

Since I’m off work, I’ve had to do some paperwork for them, it’s just some HR stuff that is required when you’re off. I can’t remember the exact question, but it was basically ‘what is wrong with you’ - so I wrote ‘possible brain injury, possible autism/adhd, possible anxiety/depression/OCD/panic disorder, possible sleep apnea and possible hormonal imbalance’ - since those are the things I’ve been referred for, but haven’t been given a diagnosis for. Another question was ‘do you consider yourself to be disabled’ - I said no because there’s no way I’m going to claim that, I’d feel like a fraud - but the truth is, I have idea if my injury makes me disabled. To look at physically - I look fine (I think, hopefully that doesn’t sound big headed), but my mind and inside feels broken (hopefully that doesn’t sound too dramatic)

I’ve gone on a bit there sorry about that, thanks for your reply and kind words though everyone has been really helpful and nice on here.

[Ideogram in reply to Mike442]

No need to apologise. I've gone through a long period of feeling like a fraud if I call myself disabled too; definitely know where you're coming from. You've got a lot to take in so please just look after yourself and just focus on the next bit at a time. Hopefully this is good news that you might get some clarity.

[Teazymaid in reply to Ideogram]

I actually think I’m imagining it until I move or do something that becomes impossible and reminds me that is is true /. I don’t know what to put down when they ask about disability 🥴 Sue

[Ideogram in reply to Teazymaid]

I'm sure you would be perfectly entitled to put it if you wanted to. You don't have to be disabled in absolutely every aspect of your life!

[Ideogram in reply to Mike442]

OP - actually it's funny that we were talking about brain v head injury. I had an assessment at the rehab place today. She actually said they call it minor head injury rather than BI because my MRI didn't show any damage to the brain; I'm just having ripple effects after the concussion, so to speak (I might not have explained that very well, and she did concede that you could have tiny damage the MRI doesn't pick up).

I have no idea if that's relevant in your case of course (it sounds like your accident was a lot more serious than mine) so it's probably not helpful at all. I just thought it was interesting that the NHS used the same terminology as you did.

End of the day it's all words though, anyway! Please ignore my tangent

[Mike442 in reply to Ideogram]

I’m not sure how serious mine was - I think I’ve always told myself it wasn’t that bad to make myself feel better but in truth I have no idea.

I’m phoning tomorrow to try and get hold of my MRI photos from 2007, I’ll have no idea what I’ll be looking at but I thought it would be good to take with me and show the neuropsychologist. I’m thinking of paying private for an MRI as I’m having to wait a month just to even talk to the GP about a referral - so I could compare my old photo to the new one I get, I don’t know 😂

I’ve been told that scans don’t show damage at a cellular level too, which is scary. Hope it went alright today 👍

[Ideogram in reply to Mike442]

Thanks mate. Yeah, helpful. Hope it goes well for you too.