Thank you so much to everyone who has contributed, I appreciate you all opening up, and please do continue to post in this thread if you want to share any further developments too.
As for me, it's a long one too...
Since the age of 17, with no prior indication, I developed a form of epilepsy. It seems my body's inability to handle too much stress and fatigue manifests itself in the form of tonic clonic seizures. This is not a constantly debilitating condition, as I have them infrequently enough to live a generally ordinary life, but the potential for one occurring has led to my having to make some important changes to how I live day to day.
My seizures consist of full blackouts, collapsing to the floor and violently spasming, which can last about 15 minutes. I tend to gradually regain very limited consciousness after that point, and am then bedridden for the following 2 days, in a clouded fog, flowing in and out of sleep. In this period I suffer an incredible amount of pain brought on by my brain essentially directing all my energy to restart my body and firing up all my neurones, as well as often some bruising caused by the fall and spasming, and by having bitten hard on my tongue or inside of my cheeks. My most dangerous seizures have taken place on a train platform, in the tube, and while cycling on the street.
Despite multiple tests, none of my neurologists have been able to identify the cause, other than that they tend to occur when I have gone through moments of increased mental and physical stress and exhaustion. Over the years we've managed my seizures through various forms of medication. In the earlier stages, I suffered a seizure about once a year. At my worst, I was having a seizure every month. Thankfully, I've now found a very effective combination of medications to balance my body and stave off any seizures. In fact, I had gone 3 years without having one, until catching Covid put my body through the mill enough to trigger another.
This decrease in the number of seizures has also coincided with changes in lifestyle (going back to complete an interrupted university course, moving away from a toxic social environment, changing career, a more balanced diet, and reducing my alcohol intake) and particularly with having moved in with my parter (soon to be wife) 8 years ago. It was difficult making so many changes at once, and cut the strings to so many routines and habits, but it really has been life-changing.
This is all something I have been managing well...
However, when my father passed away last year (from an unexpected heart-attack at 63) shortly before my partner and I were due to move to her native Sweden, we all knew I was a ticking time-bomb. Just days after our move, I had 3 seizures in 2 days. Which felt like utter s**t. It felt like I had let myself down, as if I were failing to cope with something everyone has to cope with at some point in their lives. I know it was only to be expected, but I was so frustrated and angry at myself.
I am also aware of the stress and trauma this imposes upon my partner, and family, who have to deal with the fear of losing me, as well as witnessing me going through such a violently dangerous fit. They tell me not to feel bad or guilty, as it's not my fault, but I struggle to shrug that feeling at times, such as when we have to stop watching a film because my partner gets PTSD at a particular hospital scene from having seen me in similar states, or when people have to work their travel plans around me because I'm not allowed to drive.
Most of all, I'm worried about any future kids. My partner and I both want to have children, but this presents us with 2 concerns. Firstly, the fear that any child we have might inherit my condition (possibly to an even worse degree), and secondly whether the constantly interrupted nights that come with looking after a baby will cause me to relapse into more seizures. It scares me. It scares us both.
Most days I am fine. If I have struggled to sleep at night, I will take the morning off work. If I have a headache or feel ill, I'll take it extra easy. But sometimes I just feel down. Those days aren't common, but when they do come around, it's just depressing.
Thankfully I've got a good support network of family and friends who I can talk to, which does make a big difference. It's easy to feel down and lost, but I always try to look at the positives. Yes, it sucks that I have to take medication every day, but instead I choose to look at it as something to be grateful for - there is medication I can take that keeps me from being at risk of potentially fatal injury, and that allows me to live a relatively normal life!
- - - - - - - -
I wanted to share that, not for any sympathy, but more to expose something that can cause many people bouts of mental distress, and feelings of guilt, depression and of being a burden. Epilepsy is seldom discussed and often stigmatised. People often see epilepsy as people struggling with strobe lights, or having their head strapped in a wheelchair. But there are so many different types or epilepsy, ranging from full body seizures to just zoning out while having a conversation. I always feel guilty if I feel the need to sit in a disabled/elderly seat on public transport, as to others I just look like a healthy man in his 30s, but I have to remind myself that not all disabilities are visible, and that I shouldn't care about other people's judging stares.
There will be plenty of readers here who have suffered a seizure, or any other physical or mental condition, and are scared of what it means going forward. Don't blame yourself. Don't look at yourself as a burden to others. Don't be scared. Look at the positives. Talk to people.
And, please, feel free to send me a DM.
As for me, it's a long one too...
Since the age of 17, with no prior indication, I developed a form of epilepsy. It seems my body's inability to handle too much stress and fatigue manifests itself in the form of tonic clonic seizures. This is not a constantly debilitating condition, as I have them infrequently enough to live a generally ordinary life, but the potential for one occurring has led to my having to make some important changes to how I live day to day.
My seizures consist of full blackouts, collapsing to the floor and violently spasming, which can last about 15 minutes. I tend to gradually regain very limited consciousness after that point, and am then bedridden for the following 2 days, in a clouded fog, flowing in and out of sleep. In this period I suffer an incredible amount of pain brought on by my brain essentially directing all my energy to restart my body and firing up all my neurones, as well as often some bruising caused by the fall and spasming, and by having bitten hard on my tongue or inside of my cheeks. My most dangerous seizures have taken place on a train platform, in the tube, and while cycling on the street.
Despite multiple tests, none of my neurologists have been able to identify the cause, other than that they tend to occur when I have gone through moments of increased mental and physical stress and exhaustion. Over the years we've managed my seizures through various forms of medication. In the earlier stages, I suffered a seizure about once a year. At my worst, I was having a seizure every month. Thankfully, I've now found a very effective combination of medications to balance my body and stave off any seizures. In fact, I had gone 3 years without having one, until catching Covid put my body through the mill enough to trigger another.
This decrease in the number of seizures has also coincided with changes in lifestyle (going back to complete an interrupted university course, moving away from a toxic social environment, changing career, a more balanced diet, and reducing my alcohol intake) and particularly with having moved in with my parter (soon to be wife) 8 years ago. It was difficult making so many changes at once, and cut the strings to so many routines and habits, but it really has been life-changing.
This is all something I have been managing well...
However, when my father passed away last year (from an unexpected heart-attack at 63) shortly before my partner and I were due to move to her native Sweden, we all knew I was a ticking time-bomb. Just days after our move, I had 3 seizures in 2 days. Which felt like utter s**t. It felt like I had let myself down, as if I were failing to cope with something everyone has to cope with at some point in their lives. I know it was only to be expected, but I was so frustrated and angry at myself.
I am also aware of the stress and trauma this imposes upon my partner, and family, who have to deal with the fear of losing me, as well as witnessing me going through such a violently dangerous fit. They tell me not to feel bad or guilty, as it's not my fault, but I struggle to shrug that feeling at times, such as when we have to stop watching a film because my partner gets PTSD at a particular hospital scene from having seen me in similar states, or when people have to work their travel plans around me because I'm not allowed to drive.
Most of all, I'm worried about any future kids. My partner and I both want to have children, but this presents us with 2 concerns. Firstly, the fear that any child we have might inherit my condition (possibly to an even worse degree), and secondly whether the constantly interrupted nights that come with looking after a baby will cause me to relapse into more seizures. It scares me. It scares us both.
Most days I am fine. If I have struggled to sleep at night, I will take the morning off work. If I have a headache or feel ill, I'll take it extra easy. But sometimes I just feel down. Those days aren't common, but when they do come around, it's just depressing.
Thankfully I've got a good support network of family and friends who I can talk to, which does make a big difference. It's easy to feel down and lost, but I always try to look at the positives. Yes, it sucks that I have to take medication every day, but instead I choose to look at it as something to be grateful for - there is medication I can take that keeps me from being at risk of potentially fatal injury, and that allows me to live a relatively normal life!
- - - - - - - -
I wanted to share that, not for any sympathy, but more to expose something that can cause many people bouts of mental distress, and feelings of guilt, depression and of being a burden. Epilepsy is seldom discussed and often stigmatised. People often see epilepsy as people struggling with strobe lights, or having their head strapped in a wheelchair. But there are so many different types or epilepsy, ranging from full body seizures to just zoning out while having a conversation. I always feel guilty if I feel the need to sit in a disabled/elderly seat on public transport, as to others I just look like a healthy man in his 30s, but I have to remind myself that not all disabilities are visible, and that I shouldn't care about other people's judging stares.
There will be plenty of readers here who have suffered a seizure, or any other physical or mental condition, and are scared of what it means going forward. Don't blame yourself. Don't look at yourself as a burden to others. Don't be scared. Look at the positives. Talk to people.
And, please, feel free to send me a DM.
