Trying to make sense of what happened to me! - Headway

Headway

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Trying to make sense of what happened to me!

DavidSugg
DavidSugg

My story started on December 13th 2013 while checking

My emails I felt something go pop in my head followed

By the worst headache I have ever had,

I went to bed the next day my headaches were no better

I went to my GP at 6pm as soon as I explained to him

What had happened the day before he immediately phoned?

For an ambulance and said to me that he thought I have suffered

A subarachnoid haemorrhage (SAH).well a few hours later I was transferred

From my local hospitals A@E to a specialist stroke unit some way

From my home I had no mobile phone with me so could not speak to

My wife or any one else the CAT scan I had confirmed I had suffered

A major bleed in my brain and I had to undergo surgery to fix the bleed

At this point from my point of view I did not know if I would live or

Die and still could not talk to my wife I had surgery and now have four titanium

Coils in my brain, the surgeon told me the next day I had been very lucky

To survive and without any notable loss of function to my limbs right or left side

Made me one of 4% of survivors that has this out come,

Since then because I have not been affected in the way people expect

People take the attitude well yes you had a bad experience but you are OK now

Far from it now I have permanent Forgetfulness loss of short term memory

very intense headaches most of the time loss of balance and dizziness Unable to make decisions feelings of panic when I am around crowds of people like shopping

Feelings of sadness and hopelessness and other problems none of these can been seen

At a glance even the people closest to me treat me like I am now better and cured

This is the most frustrating thing of all

16 Replies

so sorry you have had the SAH, however it looks like your GP was prompt which probably saved you suffering from long term effects. Although to survive without any physical symptoms is a double bonus so to speak.

Our brain is something we all take for granted and do not expect to have operations there.

It is frightening for you, me and many others leading up to the operation and postoperative fear that everything will be ok. Not to have your wife there with you for support was clearly a very frightening stressful time for you. The experiences you have in that people do not recognise the hidden symptoms and disability is something many of us experience. Although my condition was not a SAH but operations and radiation for a tumour, I have exactly the same issues as you, balance crowds memory decision making. With support from a neuro physio I was able to alleviate some of the symptoms but they are still there and over time I have been able to find coping mechanisms; I avoid shopping centres, go to large supermarkets at night or when they are less likely to be busy. At home I have my own study and if I'm feeling unable to cope will retreat to my own space with my partner understanding that I need time out and am not being anti social. From the time I was first ill and overcame many of the physical symptoms I have had an inner frustration; I am pleased when people do not realise I have a hidden disability while also feeling frustrated that allowances or support is not given; you are not alone. Since Christmas I have been going to the Headway Gym and with support on a 1:1 sessions am after several years feeling more confident. Have you been in contact with any of the support groups such as Headway? I found the most important thing was realising I was not alone

DavidSugg
DavidSugg in reply to brighton88

Thank you for your reply I think that most people

Like me are driven to find the answers to questions

That you ask your self and others ask like what caused

It to happen and what exactly happened

In my case I know that stress pushed my blood pressure

Up so high that it caused a burst brain aneurysm this caused

The bleed I have been surprised at the lack of documented experiences

Of people this has happened to because all the time when things crop

Up you are thinking is this normal or a sign that some thing is wrong

And because no one is the same it is hard to find the easy answers

Because they do not exist, I think that talking to people who have been

Through similar trauma that at least I might feel that I am not alone

As I do at the moment

brighton88
brighton88 in reply to DavidSugg

Physically you might be alone, although we are all here for you via this web site and there are support groups where you can drop in, or groups where there is a regular meeting. At the beginning for me the monthly headway support group meetings were a lifeline, just being with people who had been through similar experiences and listening to their stories. I met quite a few people who were laughing at their illness, which took the burden off; letting me know that it's ok to laugh at myself. How about this one, I'd lost my memory and was suffering excessive fatigue put the dinner on forgot it and went to sleep, woke up with the dog barking and the kitchen on fire....how daft is that, but from then on I was more careful with cooking.

There must be the answer to our questions as there is a lot of research done, perhaps not readily in the public domain. For quite a while all I heard was that my tumour was an unusual type never found in adults of my age. All I wanted to hear was the words 'you are normal', Now meeting with my Headway gym instructor each week is in itself therapy, I'm spending time with a 'normal' bloke who is aware I'm not totally ok and we can talk about it and how to get round it, because of my weekly meetings with him I am not alone

DavidSugg
DavidSugg in reply to brighton88

Thank you i will go to my local support group this is all very new to me but i will try to over come the things i need to with the help from other kind people

Oh my god, I am so sorry David. We're all here for you at headway.

DavidSugg
DavidSugg in reply to Negeen

Thank you Negeen

My SAH was in Dec 2011 and, like yours, my after-effects have remained pretty much hidden.

But the effects you're experiencing are absolutely classic ones and I fully empathise. It's true that, once the panic has died down, people's expectations rise again and we're left struggling with all types of problems without that initial patience & tolerance. So it's a relief to come here where others experience those same issues which we each face on a daily basis.

You can compare notes, ask for advice, have a moan, and occasionally a good laugh.

So welcome David.........there's good support here. Cat x

DavidSugg
DavidSugg in reply to cat3

Oh and my aneurysm was located in the frontal parietal lobe regain

But again the medical text books say you can expect certain problems

But you may get symptoms that do not fit in with the over all expectations

Of the medical profession bleeding when lying on the brain causes damage

To the area of the brain the bigger the area the more potential for damage

brilliant cat3 thank you and you are so right it comes down to the fact no one who has not been through it will understand how it has affected you at least here we are not alone

Mine was 12 months ago happened the same way as yours almost, but it was like someone suddenly shot a steel bolt straight up my neck. I knew it was lifethreatening, I suddenly collapsed but stayed conscious and urged friends to dial 112. They called my doctor who said could they take me there - I said no call 112 - in 10 minutes doctor and sapeur-pompiers arrived, I was examined then immediately rushed to hospital.The rest is history, with a few chapters in-between!

It is strange to hear from someone that was as lucky as I was. I put my story on here ages ago. My situation was so similar to yours, and really believe that things will get easier. You're not cured or better- yet, and may always have some form of affect, but truthfully- it does change, and get better.

Hang in there mate. :)

DavidSugg
DavidSugg in reply to oobie

Thank you oobie I read your post on your experience of

Your SAH very much like mine apart from I was never sick

And come to think about it apart from a headache

From hell and blood pressure of over 220 I did not

Look ill this was a disadvantage in my local hospital

As they did not treat my case as an emergency they

Called a guy in to see the doctor before me he had sprained

His ankle it was only after about three hours they sent me for a CAT

Scan then their whole attitude changed they had my scan on the wall

And pointed out the bleed it was about the size of an apple

I was transferred to an HDU unit some distance from my home

Just before my op five consultants and a surgeon came to see me

They asked me to lift my limbs up one by one then stood there

Shaking their heads I asked the nurse why they seemed so

Perplexed she said they cannot under stand why you are not

Paralyzed and well not far more ill then you appear I remember saying to the surgeon

As they were about to put me out if I am going to wake up with the

Same pain as I am in now I don’t want to wake up I knew that

My fate was out of my hands, the night before I was due to come

Home I was waiting for the doctors it got to 10pm and no sign of

Them I asked the nurse why they had not done their rounds she said they

Had all been called into theatre the next morning I found out a guy had died

From an SAH the same place as mine that bought it home to me how lucky

I was to survive it’s only been about fourteen weeks since it happened

So all feels very new like all that survive this I just want to feel normal and fit

Again you have given some light at the end of the tunnel with your experience

Thank you

I have been trying Kevin trudeu's Mega-memory to help with short term memory loss. seems to work. Not complette recovery but it helps. just a thought.

My goodness, my best wishes to all of you. It's bluddy difficult, isn't it? When our issues are invisible. We are doing our very best to appear "normal" and people assume we are fine and dandy as we look OK. Those that know me and the true situation have told me to make it visible and/or audible. Those that live with me see me in episodes where they think I'm having a stroke again.

I returned to work after 2 years off sick following major surgery on a large brain aneurysm. I was lucky that was found and incredibly lucky it hadn't burst. Goodness knows how I had that thing in my head with no symptoms. It was found by chance when my tinnitus was being investigated. I still have the tinnitus so that was in no way connected.

So back to work looking "great" and having had the time off, everyone thought I was fine. They expected me to be, after the phasing in period, back on track. Support suggested by Neuropsychologist was not understood or put in place properly. Pressure was piled on - targets for this, that and the other. In a particularly stressful week last August when my now ex-husband wanted me to attend a court hearing in Darlington, a 3 hours drive from where I live (where he used to live), in a place I had never been or wanted to be (he had a double life there with another woman). The occasion itself was stressful, the idea of the journey scary, the refusal of a day off work was... I didn't even bother protesting. I missed the court hearing. Judge accepted a doctor's letter to explain my absence (I actually could not talk that day). I went back to work the next day and then on the Saturday, which was a very busy Bank Holiday Saturday, and I had numbness all down my right hand side. Face, mouth, tongue, arm, hand, leg... didn't dare phone in sick. Just carried on. People noticed I wasn't myself, but not even a break was suggested let alone sending me home or calling an ambulance. My son did phone 111 when he saw the state of me when I arrived home.

Stroke was happening without me really thinking about such a thing, my issues from the surgery had been fairly common to me and I thought I'd get over it once home and resting. Been off work since and my issues (cognitive function issues, fatigue, etc) are still with me. I have a stage 3 meeting with work on Thursday and no idea what's going to happen. I may end up out of work because of this "unfit for work for the foreseeable", but I've been turned down for medical retirement. I have a strong sense of my manager and colleagues thinking I'm "swinging the lead" as I look OK. I'm not. I just do my best to look it.

Bluddy hard, isn't it? Instead of support at work, I ended up resented. Treated actually very curtly and rudely. I kept on smiling. If I end up there again I will take breaks when my brain blanks out. I will make it known when things aren't right. If I get the chance.

Good luck all.

My word, i actually felt like i was holding my breathe reading this. All i can say 'you are absolutely amazing'. My husband is at early stage of TBI, and as his wife with such difficulties and adapting /adjusting to our new journey this site and people like yourself brings better insight to support him best to my abilities. Thank you for sharing, it has really touch me to stay stronger.

Forgot to add, i wish you the best aswell.

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