Traumatic Brain Injury and Seizure

Since returning to the forum I seem to have read rather a lot of posts about regressive stroke symptoms, unexplained episodes and seizures.

I was never told about the 1/10 likely hood of me having seizures by the SA or NHS, although in reality it is more likely 9/10 of us that will experience some disruptuon or readjustment to our brains electrogram.

I was never told about the effects of a TBI (Traumatic Brain Injury) by the SA or NHS
Having an infarct in our brain is a kin to being shot in the head and a piece of our brains blown out, the only difference being we don’t have the external trauma of a bullet wound, just the internal trauma similar to one. The necrosis of the tissue of our brain, inside our skull will be one of our greatest obstacles we overcome and endure.

A seizure can be anything as wide ranging as "involuntary muscle spasm, apnea, ectopic heartbeat, drooling, transient numbness, disruption to the CNS, apraxia. tinitus and just about any other uncontrolled or involuntary physical manifestation that comes from the interruption to a normal and healthy brain electrogram and function.
One, if not many of these symptoms are almost a given as our once perfectly normal spread of electricity around our brains is massively disrupted by the apperance of an infarct and the tissues decay yet to occur around or in it.

Yet NONE of this was discussed with me by anyone at the hospital, surgery or Stroke Association, what they chose to do instead is glance past it in favour of a diatribe of menial information about medication, stroke recovery and physio/pyscho therapy.

By leaving it out, by choosing to not tell us the full extent of the TBI and it’s consequences we will almost certainly face, we’re left in a state of anxious uncertainty by, that buzzing feeling in our brain, why we’re overwhelmed by sensory overload, why we experience transient symptoms and regression, and what it is that for the most part we are experiencing at almost all stages of our recovery, and, our recovery is greatly hampered by not being told, this is going to happen, it is normal.
Almost all the information I was given did not cover these two things, and yet, the process my own brain has had to go through has been dominated by these two things, yes there’s fatigue, yes there’s tablets and a need to change the diet, not smoke and stay healthy and clot or plague free, but honestly, my greatest need was for an explanation as to what the f****k was going on inside my head and the consequences of that through my CNS to the rest of my body. No one at the Stroek Association talks about Traumatic Brain Injury and recovery, No one at the Stroke Association talks about the whole and all encompassing range of seizures and disruption caused to our neuro elctrograms by it, they just leave it out.
Now whether they choose to not tell us so as not to scare us, or, as doctors do, don’t talk about it because they have no certainty in what they’re saying so say nothing…

I for one, would have dearly loved to have been given the huge scrolling list of possibles coming my way from my TBI and it’s subsequent disruption to my neuro electogram and the ever changing readjustment in both as my recovery progressed, I’ve gone through 10 months of none stop changes in both…blind…not on any occasion has anyone inside the SA or NHS talked about either.
For me, it is a huge piece of the puzzle, and I feel that if I had been told at the start, what was to come or the range of possiblilites of what might come in both areas, the I would have managed better, had less anxiety, more understanding and maybe a better recovery.

Traumatic Brain Injury – Causes, Symptoms and Treatments

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Morning and hello @Pontwander. Well this is different. I am so sorry you feel like this information had been left out and almost kept from you. It does nothing to facilitate trust in your care. I do believe understanding what has happened and what may happen is an essential part of rehabilitation. Trouble is we are fragile, and others react to protect us. Some may require a different approach.
I have never seen the scans of my brain, noone has ever talked me through where my brain is damaged. Just labelled a midbrain infarct. I suspect I have other areas that were affected due to the trauma of my accident- I am currently seeing a neuropsychologist and alot of my deficits appear to be frontal cortex in origin. Secondary or primary? Who knows.
To a large degree I have to accept it is what it is, and all I can do is to work with what I’ve got and make the best of what I can. Never give up. Take care Julia x

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Hi both, firstly I’d like to say I found your posts very interesting and agree that some of this information should have been at least easier to find,…but I’m not sure that everyone would want to hear it (certainly not in the early months when you are just fighting to regain any sense of normality). I think you are being unfair saying that the Stroke Association should have made you aware, maybe some articles could have been published, but I think they could then be accused of scaremongering!

I do appreciate that some people do want to know much more detail but it’s not for everyone. I’ve had 2 open heart surgeries as well as a pretty hefty stroke but I don’t want to know every possible future outcome as it would be too depressing. I am happy to research the lower level bits about how I can do things to limit my chances of future problems but not the detail of horrible possible endings.

I’m not poo pooing what you are saying @Pontwander but there are possibly more people that don’t want to dwell on the worst case scenario and as a charity the SA don’t want to be seen to be negative, surely they want to reassure and help as many as possible

Please don’t take this a s a criticism, it is just a different point of view that you may not have considered. I do find your posts very informative and interesting. :+1::grin::muscle:
Keep them coming.
Mark

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Sorry about the lack of punctuation or full stops. I rattled this out before logging in to work (late!).

That was a wonderful post and so well written. I agree with everything that you have said, it would give us all a better understanding instead of trying to muddle through it all on our own. We are so forgotten once we are discharged.
Keep fighting, Jan.e

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I left hospital with the prognosis for a good recovery, (?) Processing may be a problem for a while never told I had peripheral vision loss that was unlikely to improve. Mentioned this on here a while back and it was suggested by someone on here that as we had just experienced a hell of a shock, the healing process had kicked in immediately and to be told at this stage any negative news would hamper the healing, so we have to ask, and do our own research.

I too would have liked more information, I suffered seizures (almost a year since my last one) am now waiting for an appointment for muscular skeletal physiotherapy to assist with left arm movement

I would have loved a little library of books about the brain while I was in the stroke ward. Instead, I had John Cowper Powys’s Owen Glendower, information I could access on my phone, and a daily viewing of, ironically, The Repair Shop in the T.V. Room. Now when we watch the Repair Shop and my partner asks what we could take in, I immediately answer, my brain.

From the get go, I was keen to unravel what had occurred upstairs, but I know it’s not for everybody. I find it fascinating. I’m going to order a copy of my MRI, so I can pinpoint where exactly the damage happened. Some folk don’t fancy dwelling on the nitty-gritty but, for me, it helps me manage symptoms and keeps me in more control of what I have to deal with. It actually helps my anxiety a lot, many of my panic attacks (something I have dealt with for most of my adult life) stem from a fear of the unknown (so to speak). So, I like to get to the bottom of things. When I was a child, and adults would ask me what I wanted to be when I grew up, I would answer, a secret agent or spy. I enjoy unravelling mysteries.

On the now, tarnished website, Twitter. I sometimes engage with neurologists as a stroke survivor, but my responses are often ignored. I find this interesting that they would rather natter among themselves than bring an actual survivor into the conversation. I sometimes wonder if any neurologists or stroke consultants dip into this forum and read what stroke survivors are saying.

We do have the opportunity to make this forum an excellent resource for survivors, as well as being a place for us to connect when needed. My knowledge of the brain is rather rudimentary but I am relishing in discovering new things about it, and coming to terms with the derailment we must face due to the traumatism of brain injury.

Oh as an addendum, I think acquired conditions are a rather neglected aspect of post stroke health care. This is quite important, and needs more rigorous inclusion in post stroke symptom management.

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@rups … would you let us know if you manage to get a copy of your MRI please? I was refused point blank when I asked. Although at the NeuroSurgeon appointment I asked the Consultant would he mind taking a photo (himself) of the image he was showing me on his monitor screen … I have no filters thankfully :slightly_smiling_face: Anyway he willingly took my IPad and took a great picture, it was spine related; great to have as I also like to analyse results, and as a visual person like to SEE what has happened in my body, and research.

@Pontwander, I agree with a lot of what you say. I agree it’s better to be prepared, rather than get to ‘crisis stage’ … I was just left to it for five months after my first Stroke, same after second Stroke and Tia’s. I have to say that although I do understand what you’re saying about having more detailed info in this area available through the SA … they are a Charity, and were my Lifeline when deserted by the NHS. But, as I said to Rups, I do like to be given the whole picture, best to be prepared … so I can relate to what you’re saying Pontwander. It’d be great if people were offered more in depth info by the NHS … with the option to decline if they would rather not know.

I think I’ve mentioned this programme on the Forum before that’s on Netflix: ‘Human the World Within’ … it’s very visual, with sensible Speakers, and the graphics are amazing. It might not go into exact detail re your specific condition, but it gives an excellent overview of how the body works, and there’s an excellent visual of the brain. Just a suggestion. On a final note, I agree if we’re given detailed info by the NHS/Private Consultants about what to possibly expect, BEFORE crisis stage, then we don’t have to struggle trying to research (if we can) post eg another Stroke. Anyway, wishing you well Pontwander, glad you shared because I bet a lot of people here will relate to lack of info from those who have taken an oath to ‘Do no Harm’. :sparkles:Anne​:sparkles:

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@Rups :clap::clap: great read as usual Rups. I can relate to some of your words.

I too had a discussion with a lady today, who supports me from the stroke association about the S consultants. Wondering if they ever read the real life SS experiences. Also how they would gain experience if they listened to us. We are all different.

I argued about the statins 40mg dose I asked how they knew this was the dose for me weighing at the time 9 stone and to a person 14 stone. Surly my medication just like a child’s would go on weight. I refused the 40mg and insisted on 20mg. I sometimes feel as if they herd us like cattle medication wise in my opinion.

I was interested in how you joined in with the consultants. Then they did not engage with you as a living example of a SS how rude of them. I bet they couldn’t answer your questions.

I’m with you on some @Pontwander i was dismissed and told I had a migraine. Disgraceful hospital (Carlisle) I wanted to know more and as I said I felt like herded cattle with no opinion.

Most of the people on the ward were elderly and bedridden and along came me 59 with lots of questions they did not want to answer. Nor give me correct after care.

Keep going and keep our discussions interesting thank you Loraine :wink:

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@Rups , your regular brain insights are always interesting and helpful for us to better understand what has/is going on.
I too want to get a copy of my MRI.

@Pontwander , you maybe interested to know that today I used your being shot in the head analogy when replying to a colleague about how I was doing. She replied “that explanation is a very powerful one and puts it in a different perspective!”. So I think it is a great way of highlighting our plight to the layman. Thanks, I think I’ll use it again :grin:

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@Pontwander I like to have information so would have appreciated a more detailed conversation with the Consultant, that said some SS wouldn’t be able to understand or indeed want to know the whole impact, after effects and possible upcoming acquired associated conditions that can possibly arise after a stroke, I think if the patient asks for more detailed information they should be provided with it.

We’re all different :smile:

Hello all

and thank you for sharing so much…

I have no great opinion of the Stroke Association, in Ceredigion our Stroke Support Officer works one day a week, just one out of seven days and spends most of her time handing out litreature to survivors that can be viewed on their website.
When I left the hospital they didn’t have the “seizure” pamphlet so I was home in 48 hrs like a wild wounded animal straight into seizures with no support what so ever.
I have a low opinion of NGO’s and the third sector in general as most funding goes to keeping “Barbara” in a job and not to the core needs of those they pertain to help.
I have a friend who was an evaluator for the UN who now evaluates UK charities on their mission statements and their ability to meet them, in effect, she measures whether or not they do what they say on the tin…and in 90% of charities they don’t, they fail to deliver what they say they are and for the most part are completely disconnected from their ambitions and statements and the “on the ground” reality of their sectors. Homeless charities are surrounded by the homeless, drug charities are surrounded by substance abusers and the Stroke Association in Ceredigion, is surrounded by stroke survivors it has failed.
I phoned them once in the early days, with need, their helpline had closed at 5.00pm, it wasn’t much past 7.00pm, whilst I’m sure they have more success in other areas, that they have more resources in, out here they fail miserably.

My experience is, and continues to be, that what the SA and NHS say happens and is best practice is one field over from the reality on the ground, and so without the access to the truth about my own TBI and seizures, I had to first have the experience, traumatically and blindly before garnishing the wisdom…

I had my EEG today, in hospital 60 miles away as there is no Neuro Physiology dept in Mid Wales, 10 months and 14 days after my first seizure experience.
I find it quite hard to not feel anger when every episode I’ve experienced has been terrifying, lonely and unnessacarily unexplained and ill informed, each seizure in many many ways feeling and behaving like abother stroke…but the people who knew this was coming, never told me, and those who claimed to be there to support me, were not.

Take care all.
Al. X

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@Pontwander Bless you Alan, hope it went well for you. When do you get your results?

I’m with you every step of the way for NHS as my experience was frightening, misdiagnosed and no one to help or advise me.

The stroke association did come up trumps for me in Cumbria. I have had numerous calls from a lady called Emma and she supported me through my dark days.

I hope all is ok for you kind wishes Loraine

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Sorry to hear Alan that you’re experiencing these emotions, I know of a few stroke survivors who I speak to regularly that have had similar experiences. My stroke could have been avoided had the GP I was seeing at the time heard me as opposed to just listening, but that’s another story. As survivors, we are in the frontline when it comes to others who may have yet to experience this derailment. I started shuffling straight after my stroke, I was intrigued by this as nothing was mentioned about it, I did some research and found out that Hydrocephalus can occur after stroke and one of the symptoms being shuffling. I brought this to the table at my hospital, fortunately, my stroke consultant was on it like a bonnet and arranged a second MRI. I didn’t have Hydrocephalus, but I was the one who had to bring it to attention that it may be possible.

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Morning Loraine…@loshy

The report will be written in four weeks and then passed to a Neurologist in Swansea who’ll take another two weeks to decide what the technicians report, the video and scan might mean, then they right a report and will pass it on to my GP.
My seizures have lessened in severity and frequency these last two months and they are “focal aware” which is a blessing, so it’ll be a doubt as to whether the scan caught any unusual activity, but still a piece of the puzzle I hope…

and when I say “anger” @Rups what I really mean is just mumbling FFS and tw@t’s into an empty room when one of my three GP’s waits anothe rmonth for something to be their idea that I’ve been screaming at them for 10…like acknowledging that maybe I do have sinus issues and a nasal polyp the size of a samll moon from the antiplatelet therapy and that maybe stopping the daily loss of mucusal from my nose with a simply steroid spray might be an idea, and then it is, and changes my life after 9 months of suffering…hahaha, that sort of anger, where incompetence and professional ego finally manifest a long overdue and easy conclusion or at least an attempt to explore one…bloody idiots, I told the girls doing my EEG yesterday that between them and my consultant I doubt if given all the tools they could make water warm.

GP appointment today where the stenosis in artery in the right side of my neck will be discussed after it’s recent discovery, When asked I was told it was discovered in my recent angiogram…hmmm, having only had one scan with contrast in February, is the presumption that it’s taken them 9 months to diagnose a potential life threatening casue of my stroke (whilst all along telling me it was cryptogenic) and there by doing something that the NHS and SA tell you in their fantasy world will be done with the first two weeks following a major ischaemic event…surely not…Ten quid it is…haha

Regards
Al. Xx

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Sorry that some of you have had such a bad experience. I hear what you’re saying about charities and agree that many are seriously mis managed however I think part of the problem comes down to the woefully underfunded NHS that is totally broken and noone in our lovely government gives a @#!&. These rich Tories will never go near an NHS hospital so couldn’t care less about the general public.

There are massive problems in the service provided by the NHS and huge disparities in what kind of treatment people receive depending on where they live. I don’t personally feel it is the SA’s job to fix these problems. I didn’t have the best experience in hospital (but was nothing like as bad as some of you) but I did find that the SA helped me a lot and were very supportive.

The NHS is broken. A world beating medical service that was the envy of every other country seems to be from a bygone era and probably won’t get back to an acceptable level . It is being mismanaged and heading fast towards a fully privatised insurance based American style model. RIIP.

That’s the real Crux of the matter!

I don’t wish to get into any arguments about this issue so let’s just say there are people with different opinions :grin:.

I have a very busy period at work for the next month so will be taking a sabbatical from these forums for a while. I wish you all a pleasant time.

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@Ingo66 please don’t work yourself to hard and rest when you can even for 20 mins in-between busy periods.

Talk when you get back lots of luck over this busy period for you. Kind regards Loraine

Hi Lorraine
I can’t remember the last time he stroke association called. My stroke was 2 years ago

@chris67 if you need support there’s a number to ring Stroke Helpline

For information about stroke and support, call our dedicated Stroke Helpline on [0303 3033 100](tel:0303 3033 100) or email helpline@stroke.org.uk. Check our opening hours here.