I mentioned having encountered Epilepsy vlogs on YouTube in "Epilepsy Update 18 March 2017", and how decisive they were in helping me learn to cope with Epilepsy for the first few years after my first seizures- above all when it comes to the emotional and practical sides. I also wrote that those vlogs are what inspired me to start my own blog.
Ally Amodeo, above, is a young woman with Epilepsy who has her own YouTube vlog, and her vlog is one of the very vlogs that helped me greatly back then- she probably never knew just how much of a difference she really was making in at least one person's life.
I asked Ally if she'd mind if I were to post a link to one of her videos and she was ok with it, so here it is! Be sure to take a look at the rest of her videos and click follow if you like them.
Thanks Ally!
https://www.youtube.com/watch?v=y67V2_a_J-w&lc=z23hxbnhmvaiubh3iacdp435udhkc00uigh4qpywbz5w03c010c.1490810100143843
Here's an update she uploaded about 3 months before the time of this posting:
https://www.youtube.com/watch?v=XDrOC_oBDgM
Wednesday, March 29, 2017
Saturday, March 18, 2017
Epilepsy Update 18 March 2017
Epilepsy is completely bewildering...
When I woke up in the emergency room at the hospital on that Sunday morning back in late January of 2008, just after having had two epileptic seizures out of the clear blue sky, someone should have put up a sign that read:
Anyone who has read my very first entry- "My Epilepsy Story"- knows that I denied that I had Epilepsy for the first few years after those first seizures, but that it eventually progressed to the point where it could no longer be denied because it began to seriously affect my everyday life.
I was seeing a neurologist when the Epilepsy began to really impact my life negatively and I told him all that was happening, but his only reaction was to do EEGs, take blood, declare that all was well- and send me home again. I'd walk home in an epileptic daze, pounded by tiny, one second seizures. I felt worse and worse as time went by and it was becoming extremely difficult to continue working. It finally dawned on me that I had a bad neurologist and needed to change, which I later did but which took many months due to long waiting lists. The new neurologist is good but says the damage is done. He can make it better but thinks my seizures my not be able to be stopped completely anymore.
At any rate it became more and more clear to me that it's up to each and every epileptic to study and research and to learn as much as they can about the illness and how to live with it themselves, and not to depend on doctors for everything. Neurologists are there to keep the medications properly adjusted so that you are as seizure and migraine free as possible, while balancing the side-effects of the medication at the same time. They simply don't have time to teach each and every epileptic the dozens or possibly even hundreds of lifestyle changes they can make that will help minimize seizures and migraines, not to mention the myriad other effects of Epilepsy on everyday life.
There came a point where I set out to research Epilepsy myself, and thankful I was to be living in the day of the internet! Yet what I found when I began researching was mind boggling!
Epilepsy is a seemingly infinite, incomprehensibly complex mass of myriad types of seizures, daily effects, medications and combinations of medications, side-effects of medications, symptoms, different combinations of effects and symptoms based on which part of the brain is damaged, and each person has their very own special combination of seizure/migraine triggers, and the list goes on and on and on.
I was basically the only person I knew with Epilepsy when I began my research so I had nobody to ask where I might get more information. I sat down with my laptop and typed Epilepsy into Google, and away I went...
I found myriad Epilepsy Foundations, forums, chats. I later discovered vlogs, blogs, and a social networking platform for people with Epilepsy. Nowadays there are also Facebook groups. Over the course of the past few years I've come into contact with fellow epileptics from all over the world and heard hundreds of stories. I was bewildered and totally disheartened for a long, long time, I must admit. I actually thought about quitting because it was only dragging me down more. All my research was doing was throwing up more questions. What exactly were all of those things that were happening to me every day? Seizures? Side-effects of the medication? Was it normal that I was lost in a daze half the time? Did every epileptic's brain feel this bad? Was I only imagining it all? Am I "normal", so to speak? In chats and forums I saw hundreds of people who all experienced a million different things and nobody who experienced exactly what I did. I felt ashamed. I must be doing something wrong. I began to have difficulty being honest with my neurologist because I thought it must all be my own fault that I was doing so badly.
Over time however a broad base of common denominators seemed to become vaguely visible, kind of like a very, very large pool of symptoms/effects that is in fact finite and not infinite. Everyone with Epilepsy has a number of things from that pool in some combination, and there are often some similarities in the combinations in connection to the damaged region of the brain. In other words people with right temporal lobe Epilepsy- such as myself- seem to often have somewhat similar symptom/effects combinations. I've also met a number of people with right temporal lobe Epilepsy who's illness progression was astoundingly similar to mine, whereas it was completely different with someone who's focal point is just a few centimeters away.
In the end I discovered that
I have my own combination of symptoms/effects from that pool of common denominators and it just took me a while to find other people with similarities, but they're out there.
I feel like one of the things that helped me the most in my search for ways to cope with Epilepsy in everyday life were Epilepsy vlogs on YouTube, as well as various Epilepsy blogs. Questions are answered in a few sentences in forums and chats, but vlogs and blogs go deeper in some way. I guess you could say that the heart of the person comes through and a different kind of connection is established. They share a portion of their life with you. They open themselves to their viewer or reader respectively, and let them see the emotional- the human side of the story in their every day lives. I found myself moved to tears at times and felt like I wasn't alone anymore. I could identify with them. I learned from many of them because I was experiencing many of the same things and they had already worked through some of them, and I was able to benefit from their experience. It was a big help just learning from them that I was "normal", and learning to recognize just exactly what all of the different things that were happening to me every day were.
That's why I started this blog and that's why I continue writing it, and that's why I try and be totally authentic when I write. There might be somebody out there somewhere who is searching, wondering,
When I woke up in the emergency room at the hospital on that Sunday morning back in late January of 2008, just after having had two epileptic seizures out of the clear blue sky, someone should have put up a sign that read:
Anyone who has read my very first entry- "My Epilepsy Story"- knows that I denied that I had Epilepsy for the first few years after those first seizures, but that it eventually progressed to the point where it could no longer be denied because it began to seriously affect my everyday life.
I was seeing a neurologist when the Epilepsy began to really impact my life negatively and I told him all that was happening, but his only reaction was to do EEGs, take blood, declare that all was well- and send me home again. I'd walk home in an epileptic daze, pounded by tiny, one second seizures. I felt worse and worse as time went by and it was becoming extremely difficult to continue working. It finally dawned on me that I had a bad neurologist and needed to change, which I later did but which took many months due to long waiting lists. The new neurologist is good but says the damage is done. He can make it better but thinks my seizures my not be able to be stopped completely anymore.
At any rate it became more and more clear to me that it's up to each and every epileptic to study and research and to learn as much as they can about the illness and how to live with it themselves, and not to depend on doctors for everything. Neurologists are there to keep the medications properly adjusted so that you are as seizure and migraine free as possible, while balancing the side-effects of the medication at the same time. They simply don't have time to teach each and every epileptic the dozens or possibly even hundreds of lifestyle changes they can make that will help minimize seizures and migraines, not to mention the myriad other effects of Epilepsy on everyday life.
There came a point where I set out to research Epilepsy myself, and thankful I was to be living in the day of the internet! Yet what I found when I began researching was mind boggling!
Epilepsy is a seemingly infinite, incomprehensibly complex mass of myriad types of seizures, daily effects, medications and combinations of medications, side-effects of medications, symptoms, different combinations of effects and symptoms based on which part of the brain is damaged, and each person has their very own special combination of seizure/migraine triggers, and the list goes on and on and on.
I was basically the only person I knew with Epilepsy when I began my research so I had nobody to ask where I might get more information. I sat down with my laptop and typed Epilepsy into Google, and away I went...
I found myriad Epilepsy Foundations, forums, chats. I later discovered vlogs, blogs, and a social networking platform for people with Epilepsy. Nowadays there are also Facebook groups. Over the course of the past few years I've come into contact with fellow epileptics from all over the world and heard hundreds of stories. I was bewildered and totally disheartened for a long, long time, I must admit. I actually thought about quitting because it was only dragging me down more. All my research was doing was throwing up more questions. What exactly were all of those things that were happening to me every day? Seizures? Side-effects of the medication? Was it normal that I was lost in a daze half the time? Did every epileptic's brain feel this bad? Was I only imagining it all? Am I "normal", so to speak? In chats and forums I saw hundreds of people who all experienced a million different things and nobody who experienced exactly what I did. I felt ashamed. I must be doing something wrong. I began to have difficulty being honest with my neurologist because I thought it must all be my own fault that I was doing so badly.
Over time however a broad base of common denominators seemed to become vaguely visible, kind of like a very, very large pool of symptoms/effects that is in fact finite and not infinite. Everyone with Epilepsy has a number of things from that pool in some combination, and there are often some similarities in the combinations in connection to the damaged region of the brain. In other words people with right temporal lobe Epilepsy- such as myself- seem to often have somewhat similar symptom/effects combinations. I've also met a number of people with right temporal lobe Epilepsy who's illness progression was astoundingly similar to mine, whereas it was completely different with someone who's focal point is just a few centimeters away.
In the end I discovered that
so to speak...
I have my own combination of symptoms/effects from that pool of common denominators and it just took me a while to find other people with similarities, but they're out there.
I feel like one of the things that helped me the most in my search for ways to cope with Epilepsy in everyday life were Epilepsy vlogs on YouTube, as well as various Epilepsy blogs. Questions are answered in a few sentences in forums and chats, but vlogs and blogs go deeper in some way. I guess you could say that the heart of the person comes through and a different kind of connection is established. They share a portion of their life with you. They open themselves to their viewer or reader respectively, and let them see the emotional- the human side of the story in their every day lives. I found myself moved to tears at times and felt like I wasn't alone anymore. I could identify with them. I learned from many of them because I was experiencing many of the same things and they had already worked through some of them, and I was able to benefit from their experience. It was a big help just learning from them that I was "normal", and learning to recognize just exactly what all of the different things that were happening to me every day were.
That's why I started this blog and that's why I continue writing it, and that's why I try and be totally authentic when I write. There might be somebody out there somewhere who is searching, wondering,
Am I "Normal"
Saturday, March 11, 2017
Epilepsy Update 11 March 2017
I have to stop and think hard for a moment about how to begin describing the past week. On the one hand it's all an incoherent blur of events, all overshadowed by struggle and distress and I can only recall most of it after looking back through my appointment book. Yet on the other hand there are a couple of important things that stand out that I need no reference for.
For one thing it seems like a basic pattern may have become clear, or maybe I should say clearer since I began to see the pattern a couple of weeks ago. It would seem that my condition has been "the best" on Mondays and has gotten consistently worse each day as the week progresses. That seems logical and fits the photo above perfectly. My batteries get recharged over the weekend and then get weaker and weaker as the week goes by.
I don't know how perfectly the analogy fits in my case and it's only begun to become visible since my boss authorized me to work from home on Fridays back on the 4th of February. Here's how I noticed it the first time: Wednesdays seem to be especially vulnerable days, above all the mornings. I often sit there in bed with my coffee, brain swirling, simply not knowing how in the world I'm going to get through the day, everything in me screaming to stay home with the shades drawn. On one Wednesday like 3 or 4 weeks ago it was late morning at work and I was doing really, really bad when it suddenly dawned on me that I only had to hold out for one and a half more days! I could work from home on Friday! Working in peace and quiet. My heart calmed a touch and I took courage. That helps me every every day of every week now, knowing that I only have to make it through till Thursday, that I can work from home on Friday in peace and quiet. Up till now I'd always thought that every day was just as bad as every other but somehow the change to home office on Fridays seems to have opened the way to seeing a pattern that each day gets progressively worse from Monday through Thursday. Who knows how true it is?
We all know how Epilepsy is: just as soon as you think you understand it, it proves you wrong...
On another note, a couple of "old friends" returned last week:
Seizures and emotional storms. Seizures have been very light and rare and emotional storms practically non-existent since the 23rd of January, the day I woke up with that extremely strange feeling in my brain. That feeling, though much weaker, hasn't left since then, and everything else has changed. As I said there have only been occasional seizures and they have been light, and there have been no real emotional storms to speak of. I cannot say whether or not I've had any migraines because my brain has been in a constant, never-ending epileptic daze to one extent or another since that day, and I don't know if I'd even recognize a migraine through the daze.
That epileptic daze was stronger right from the beginning of the week, especially in the mornings. It was like swimming in a tank of oil. The daze lightened a little in the afternoons.
I've been hit by waves of sadness all week. Deep sorrow suddenly came out of nowhere and I found myself crying for no reason at all. I was especially vulnerable in the mornings and balled my eyes out while making my sandwiches for work and taking a shower. It was like the weight of the world was resting upon my shoulders and I felt like I just could not make it. I kept on going anyway, knowing that God was going to carry me.
I began having complex partial seizures on Monday. They were pretty unpleasant, but short- anywhere from 10 seconds to 1 minute. Then came Thursday. On Thursday I had 2 heavy complex partials that lasted about 20 minutes each! They weren't quite bad enough that I had to go to the floor, which was good since I was on foot in town when I had one of them, but my consciousness was pretty badly affected and I had nausea. I was suffering and felt despair and it seemed like it would never stop. It just kept going and kept going and kept going. Those seizures left me thoroughly exhausted. I had one more seizure late Thursday afternoon, but it only lasted about 3 minutes and wasn't quite as heavy as the other two. In the end I took off work 45 minutes early and went home.
One other thing is maybe worth mentioning, but I have to back up to Wednesday to talk about it. One of my charges is causing major stress at the moment, and we're talking about the kind of personality where when the person has gotten something into their head there is nothing in this world that you can do or say that will get it out of their head again. I had to see that person on Wednesday, and at the same time the epileptic daze and emotional storm climaxed on Wednesday! There I was, immersed in a world of suffering, and that person hit me with a brutal wave of aggression over falsely drawn conclusions, and had surrounded himself by a wall of granite that barred all reason. I felt aggression rising within me as well. A mighty wave of aggression. My spirit wanted to go into full battle mode and wipe the person out! I wanted to rip and tear and shred! But I know full well not to do that. I know never to react in that condition. I ended the meeting as soon as possible. I was praying about it as I got on my bike, just telling God he was going to have to take care of that person because the person wouldn't listen to me, and I think I heard God's still, small voice telling me that it had been good not to react much to what the person had said, in other words to just let the person get it all off their chest.
When it comes right down to it, if God were to hold me accountable for every wrong word I've ever said or will say in the future I would be in a lot of trouble! So would it be right for me to hold the person I'm writing about accountable? That person did me wrong, but I myself have also done many people wrong and will likely do it again, so I am no better and therefore have no right to judge.
Sunday, March 5, 2017
Epilepsy Update 03 March 2017
Yesterday was a good day 😊
My head was clear right from the moment I awoke yesterday morning- meaning that the epileptic daze, or that feeling in the brain that I always write about, was only very, very, very light. My heart was peaceful and my spirit easy as I nipped on my first cup of coffee in bed, thanking God for another day and asking him to watch over me and to give me the wisdom to help the people that I had appointments with at work that day. Not everybody reading this may be able to understand that, but I start each and every day that way, giving the day to God and asking for his help and wisdom to help the clients I will be serving on that day, knowing that I don't stand a chance without his help. Anyone who has read this blog knows what condition my brain is in much of the time, how on many days even the simplest things like making sandwiches for work in the morning or crossing the road without getting run over by a car can be a challenge. Yet it's my job to counsel broken people and to help them get back on their feet emotionally and psychologically. How am I to do that when I myself am so terribly sick, when my own brain doesn't work right anymore? Believe me, I can only do that with God's help!
When I go into a counseling session with my brain completely lost in that epileptic daze, and my charge goes away a couple of hours later feeling better and having made a few steps more progress in some area of his or her life, do you want to tell me that it was me who brought that about, me being in such desperate condition myself? That happens day after day, week after week, month after month, year after year.
It can only be God...
So yes, I give each day to him and ask for his help and wisdom each and every morning as I drink my first cup of coffee in bed. Then I get up and get ready for work, and just trust that he'll do it, no matter what condition my brain is in. I know he'll do it because I've seen it a million times.
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