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.