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Looking for Advice and Information

Mon, 03/12/2018 - 10:52
Hi, i am a 53 year old professional Fire & Rescue Officer, always been a active fit person and up until May 2016 never been ill or injured other than rugby injuries. In May 2016 i was on my cycle and returning from a 25 mile cycle ride, when half a mile from home started to feel funny and cant remember getting home, i was very confused and was taken to hospital and an MRI showed that i had had a stroke. Caused by a clot, not a bleed, but was given excellent quick treatment and the only issue i was left was with loss of some speech which returned slowly over the next months. As a serving fire officer, i was put on illness absence for 4 months to recover and found i was tired very easy and my brain could not cope with any where near the stress and pressure i could before. I was given lots of tests and they could not find any reason for the stroke and all my factors put me in the very low likelihood of a stroke or heart issues. In December 2016, i had just returned back to work and was working towards getting myself back to full operational duties, when without any warning, i collapsed playing golf with my brother. I was chatting one second and without warning i collapsed and my brother found me face down in the grass, i fitted for around 1 minute, did not lose bladder control and was not thrashing around, but one leg was twitching. I also bit the side of my tongue. I was sent to a neurologist and given an EEG scan which came back normal, and as a precaution i was put on Keppra (2 x 500mg) daily. I worked hard with the support of my employer who supported me through losing my driving licence by putting me in a project role. I worked incredibly hard getting back to full health and got myself back to full operational duties in December 2017, despite a lot of people writing me off. 2 weeks ago, i had another completely unexpected siezure and this time i was in my local swimming pool, i had gone in late due to work pressures and i had tried to complete 40 lengths in 30 minutes before the pool closed, i was 3 lengths from the end, just turned at the deep end and started to feel strange. The pool attendants had noticed my plight as the pool was empty apart from me. Unlike the last time, i was aware something was not right and i can remember the staff asking me if i was ok, i had managed to get to the side of the pool and had my arm on the edge, and can only describe that i could hear their words, but could not see them and it felt like i was in a vortex. The staff realising i was in trouble pulled me out of the pool, where i had a siezure like the first time for around 1 minute, no loss of bladder, no thrashing. They then said i went into a coma type sleep for 15-20 mins and when i came round i was responding to them, but they stated that i was just looking through them. I am now waiting to see another neurologist and am now back on illness absence but at the moment it looks most likely that i will be medically retired, which is a massive blow to me personally and professionally as i have worked incredibly hard to build my career over the last 25 years and i am very proud to serve my community. My job had become incredibly difficult due to the austerity cuts in public services and i work for one of the smallest fire and rescue services, and we have seen managers at my level in the organisation reduce from over 20 to 8, with the workload just been passed around me and my colleagues. My doctor and specialists believe work related stress is a factor, but i am just now looking to see if anyone has had similar experiences or can offer me any advice on how i can ensure that i do not have any more siezures??? I do live in a rural County and the loss of my licence for another 12 months is a massive blow to me and i also, like all ex-rugby players like a beer or two, do not drink at home but enjoy beers with friends at weekends etc but only every now and again. Any thoughts or advice, gratefully received, regards Dave .

Comments

HI Dave,Like you I also like

Submitted by birdman on Mon, 2018-03-12 - 12:55
HI Dave,Like you I also like to be physically active.  I grew up helping dad and mom at their self-employed business (sawmill / pallet shop / logging) while I had seizures once in a while.  Doctors told me to avoid the dangerous work but I couldn't just sit still. Stress is a big factor for managing seizures.  The way I look at it is if I'm doing what I love and am good at it, my stress level is reduced and I'm less likely to seize.  I don't think my doctors look at it that way.Do what you enjoy is one way to reduce seizures.  Unfortunately there is no way to predict how well your seizures will remain controlled through traditional "drug therapy".   Time will tell if you have "refractory epilepsy".  Around 70-75% of patients with epilepsy have seizures which will eventually be controlled by medication or drug therapy.  Another quarter to one third of us tend to have seizures which do not fully respond to medications.  It takes time and experimentation with multiple medications to find out.  On the video, "Seized Inside the Mystery of Epilepsy" a young lady at the end expresses it well that treating epilepsy is a "process" and "journey".Sorry to hear the sad story that you had to retire early from a job you loved.  Again, stress is a factor in reducing "seizure threshold" or making it more likely that a person will have seizures.  Maybe your story can be used to stimulate public service decision-makers to keep more help, keep the stress levels and workload down, and retain more good employees.Mike

thanks Mike, appreciate you

Submitted by Dave E on Mon, 2018-03-12 - 13:01
thanks Mike, appreciate you sharing your experience

Triggers for me are heat,

Submitted by nadinejohnson99@yahoo.com on Mon, 2018-03-12 - 17:50
Triggers for me are heat, stress, and sickness like the flu and earaches. I’m also on driving restrictions, I can get it back if I’m seizure free for 90 days. I get to day 10 then I start all over again. Right now I’m thinking the timing of taking my meds is a trigger. I’m still struggling but managing. 

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