Chozz
Player Valuation: £5m
I had a quick search on the forum for any threads or conversations about epilepsy and came up empty handed, so thought I might open this one up for anyone impacted by it, or just as a place to share stories.
I was only officially diagnosed with epilepsy in 2018. I had always suffered with these strange tingling sensations that would occur in clusters at random and sporadic times. My folks had told me that I had been hospitalised when I was very young after a very strong fever. They remember that I would often zone out a bit and become very tired or drowsy.
Nothing was ever discovered until I started experiencing these episodes in my 20s and 30s. I had been to my GP a few times to query what it could be, but it was difficult to describe the symptoms (deja vu sensation, pins and needles spreading and rising from my stomach up my back and over my head, dizziness, a heightened sense of fear or impending doom and subsequently left drained and glum)...I sounded like a nutter. So eventually I was referred to a neurologist for a consultation.
It took a number of months through the public HSE system to go through various appointments, EEGs, MRIs and other tests. The EEG would only show electrical activity if I happened to have these episodes during the test, even a sleep deprived EEG failed to trigger them. But the MRI did reveal "mesial temporal sclerosis" which was a lesion or damage to the temporal lobe. Quite typically this would be as a result of trauma or in my case, possibly the product of the fever / illness when I was a child.
I was officially diagnosed with a simple partial seizure (focal Onset aware) type epilepsy. Essentially I never lose consciousness (thankfully) and the seizures generally last only 30 seconds to 2 mins. I can remain in control during the episodes and don't experience any physical or jerking movements etc. As it's located in the temporal lobe, I experience a more emotional and psychological effect. I am so lucky not to have full blown seizures where people typically lose awareness and break into a physical fit, that must be truly awful. I know friends and family that do suffer from it and it is horrendous, causing so many potential dangers from falls alone.
However my type of epilepsy is very draining emotionally and physically. I have gone through 4 or 5 different types of medication since 2018 (keppra, zonegran, lamictal, zebinex and now briviact). Some worked to treat and prevent the seizures, but left me with mood impacting side effects. Keppra in particular brought out a severe short temper and made me noticeably more aggressive and angry. Zonegran left me feeling quite numb and zoned out. I went a few years without any seizures whilst on these meds, but at Xmas 2020 I suddenly started experiencing seizures again, in clusters and waves. Basically it was relentless with up to 20 a day. I was exhausted and it brought on a real feeling of low mood and almost depression.
I was coincidentally diagnosed with covid at the time and wonder did it trigger something. I was fairly symptom free in terms of covid, no cold or flu feelings or loss of senses etc. But ever since I can't seem to get any meds to work. I recently switched to Briviact (similar to keppra) in the hope that it worked before but perhaps won't have the same side effects.
It was going relatively well for the last few months but lapsed back into another cluster since the weekend, which is still continuing today. Again, I have to state that I realise I'm lucky not to suffer with a stronger type of epilepsy. But it really does affect my mood in the aftermath. This bizarre deja vu and intense fear sensation that accompanies each seizure leaves a real dent in my mental health. I've even started taking another small anti depressant to try offset the effects.
I've read so much about epilepsy over the years and it does seem that the two can be intrinsically linked. Either via the medication or the actual seizures themselves.
Anyway, I was just opening up this topic to help anyone share their own epilepsy stories or provide advice or guidance to others who might be suffering.
COYB
I was only officially diagnosed with epilepsy in 2018. I had always suffered with these strange tingling sensations that would occur in clusters at random and sporadic times. My folks had told me that I had been hospitalised when I was very young after a very strong fever. They remember that I would often zone out a bit and become very tired or drowsy.
Nothing was ever discovered until I started experiencing these episodes in my 20s and 30s. I had been to my GP a few times to query what it could be, but it was difficult to describe the symptoms (deja vu sensation, pins and needles spreading and rising from my stomach up my back and over my head, dizziness, a heightened sense of fear or impending doom and subsequently left drained and glum)...I sounded like a nutter. So eventually I was referred to a neurologist for a consultation.
It took a number of months through the public HSE system to go through various appointments, EEGs, MRIs and other tests. The EEG would only show electrical activity if I happened to have these episodes during the test, even a sleep deprived EEG failed to trigger them. But the MRI did reveal "mesial temporal sclerosis" which was a lesion or damage to the temporal lobe. Quite typically this would be as a result of trauma or in my case, possibly the product of the fever / illness when I was a child.
I was officially diagnosed with a simple partial seizure (focal Onset aware) type epilepsy. Essentially I never lose consciousness (thankfully) and the seizures generally last only 30 seconds to 2 mins. I can remain in control during the episodes and don't experience any physical or jerking movements etc. As it's located in the temporal lobe, I experience a more emotional and psychological effect. I am so lucky not to have full blown seizures where people typically lose awareness and break into a physical fit, that must be truly awful. I know friends and family that do suffer from it and it is horrendous, causing so many potential dangers from falls alone.
However my type of epilepsy is very draining emotionally and physically. I have gone through 4 or 5 different types of medication since 2018 (keppra, zonegran, lamictal, zebinex and now briviact). Some worked to treat and prevent the seizures, but left me with mood impacting side effects. Keppra in particular brought out a severe short temper and made me noticeably more aggressive and angry. Zonegran left me feeling quite numb and zoned out. I went a few years without any seizures whilst on these meds, but at Xmas 2020 I suddenly started experiencing seizures again, in clusters and waves. Basically it was relentless with up to 20 a day. I was exhausted and it brought on a real feeling of low mood and almost depression.
I was coincidentally diagnosed with covid at the time and wonder did it trigger something. I was fairly symptom free in terms of covid, no cold or flu feelings or loss of senses etc. But ever since I can't seem to get any meds to work. I recently switched to Briviact (similar to keppra) in the hope that it worked before but perhaps won't have the same side effects.
It was going relatively well for the last few months but lapsed back into another cluster since the weekend, which is still continuing today. Again, I have to state that I realise I'm lucky not to suffer with a stronger type of epilepsy. But it really does affect my mood in the aftermath. This bizarre deja vu and intense fear sensation that accompanies each seizure leaves a real dent in my mental health. I've even started taking another small anti depressant to try offset the effects.
I've read so much about epilepsy over the years and it does seem that the two can be intrinsically linked. Either via the medication or the actual seizures themselves.
Anyway, I was just opening up this topic to help anyone share their own epilepsy stories or provide advice or guidance to others who might be suffering.
COYB
