Hi. I was diagnosed with epilepsy a couple of years ago but I don't seem to have the typical symptoms that I have been reading about. The last episode was diagnosed as Syncope and the more I looked into syncope, the less likely it seems that my episodes were actually epileptic seizures.
My back story (apologies if it is a little long-winded but I think the history behind this is important):
The first instance happened on Christmas morning. A couple of months beforehand, my grandmother died and my brother dragged the whole family through hell because he felt entitled to a lot more inheritance since our mother had passed away many years before. I couldn't sleep or eat for months due to the stress, but I was working 8-hour days as a painters labourer while juggling being a single mom, so I just kept pushing through (as you do as a single Mom.) It got to the point that on Christmas I had almost no energy to even stand up, I watched the kids open their presents and then told them that I had to go to bed - I crawled a short way but realised I would have worried my kids, so I pulled myself up to my feet and staggered off to bed. After a while, I needed the loo, but once I was done, I stood up and I got really dizzy - next thing I know, I was on the floor shivering like I'd been trapped in a freezer (this was summer, so I shouldn't have felt so cold, I thought. The eldest child called my ex (their Dad) and he was there within a couple of minutes. I was still shivering uncontrollably so he told the paramedics when they got there that I was fitting due to something he witnessed 15 years before (not a fit, but he thought so). OK.. next episode
8 months later, I had been working 10 hour days as a traffic controller for around 6 months, I was going through the bad habit of not eating due to being too tired and not really getting hungry, so I would forget to eat. Sleep was fairly non-existent too. At work, I got a sense on de-ja-vous (only after I realised it was because I was standing in the exact same spot as the day I started with the company). On the drive home I began to lose my vision - I call it the grey veil - and felt my feet and lower legs get hot and heavy. I thought it may be my blood pooling into my legs, so I tensed all my muscles and it seemed to work. I was stopping into the shop on my way home and the relief of being so close to the car park so I could rest made me relax... Then everything went black. I was vaguely aware of being shaken around but I just wanted the world to go away so I could sleep because I was so exhausted. I came awake in a bush across the road - luckily I had only rolled a few meters as I was almost stopped when it happened. The strange thing which scared me is that when people ask me questions such as do you know where you are, etc, I Do know where I am, but my mouth doesn't co-operate. The words get stuck on my tongue even though my mind knows exactly what is happening. Goodbye driver's licence and job.
Next episode was a couple of months later, not eating or sleeping due to the stress of losing my job and now my ability to buy a small house to live in (getting a rental is like winning lottery now). Decide I'd better have something substantial to eat so made myself and ate a potato bake (on a very empty stomach). stood up , got dizzy and fell to the floor. I've asked my kids about the events that they witnessed and they insisted there were no convulsions.
I had been on Keppra 250 but it was the most horrible experience, I felt tranquillized but at the same time my whole body was constantly tensed up. I could barely feed my kids toast for dinner, but, as a Mum, I persevered. I explained this to my neuro who dismissed anything I said and told me to take DOUBLE the dose!!! I tried, but it was impossible to function as a human. I told my GP and he said to stop the meds. I did - gladly. I now felt normal again.
The last episode was in September 2021. I had just got a new job in a factory working a very labour-intensive job sanding cupboards, the amount of sweat and energy needed, I still kept losing weight no matter how much I tried to eat ( got down to 43kg). one hot day, I was feeling really thirsty, I just couldn't quench it. I started getting dizzy and got the grey veil again. The next thing I know, my co-workers were standing around me and I wondered why I was on the ground. When the ambulance officers got there, they asked me the usual questions and the same thing about my mouth not wanting to work, even though I knew exactly where I was and what was going on. My inability to answer properly keeps coming up on my records as being confused and disorientated, but I wasn't. It was like having a page on the computer screen and trying to print it out but the printer gets jammed.
Anyway. I realized now that I have a problem with eating and push myself to eat a regular time. I still sometimes get sidetracked but I am much better at calorie intake and have not had any episodes since. My second neuro now has me on 50mg levicam which has much fewer side effects, but I feel like I have syncope and not epilepsy and I don't really want to take medication if it really isn't needed. I do still take the levicam because I'm not an expert and would rather be safe than sorry, but this has never felt like epilepsy but no one seems to think that the diagnosis might be wrong and is saying I'm in denial. I don't deny that I might have epilepsy, it's only because I like to understand things and what has happened to me doesn't seem to fit the usual stories for seizures.
Does anyone have similar issues?
My back story (apologies if it is a little long-winded but I think the history behind this is important):
The first instance happened on Christmas morning. A couple of months beforehand, my grandmother died and my brother dragged the whole family through hell because he felt entitled to a lot more inheritance since our mother had passed away many years before. I couldn't sleep or eat for months due to the stress, but I was working 8-hour days as a painters labourer while juggling being a single mom, so I just kept pushing through (as you do as a single Mom.) It got to the point that on Christmas I had almost no energy to even stand up, I watched the kids open their presents and then told them that I had to go to bed - I crawled a short way but realised I would have worried my kids, so I pulled myself up to my feet and staggered off to bed. After a while, I needed the loo, but once I was done, I stood up and I got really dizzy - next thing I know, I was on the floor shivering like I'd been trapped in a freezer (this was summer, so I shouldn't have felt so cold, I thought. The eldest child called my ex (their Dad) and he was there within a couple of minutes. I was still shivering uncontrollably so he told the paramedics when they got there that I was fitting due to something he witnessed 15 years before (not a fit, but he thought so). OK.. next episode
8 months later, I had been working 10 hour days as a traffic controller for around 6 months, I was going through the bad habit of not eating due to being too tired and not really getting hungry, so I would forget to eat. Sleep was fairly non-existent too. At work, I got a sense on de-ja-vous (only after I realised it was because I was standing in the exact same spot as the day I started with the company). On the drive home I began to lose my vision - I call it the grey veil - and felt my feet and lower legs get hot and heavy. I thought it may be my blood pooling into my legs, so I tensed all my muscles and it seemed to work. I was stopping into the shop on my way home and the relief of being so close to the car park so I could rest made me relax... Then everything went black. I was vaguely aware of being shaken around but I just wanted the world to go away so I could sleep because I was so exhausted. I came awake in a bush across the road - luckily I had only rolled a few meters as I was almost stopped when it happened. The strange thing which scared me is that when people ask me questions such as do you know where you are, etc, I Do know where I am, but my mouth doesn't co-operate. The words get stuck on my tongue even though my mind knows exactly what is happening. Goodbye driver's licence and job.
Next episode was a couple of months later, not eating or sleeping due to the stress of losing my job and now my ability to buy a small house to live in (getting a rental is like winning lottery now). Decide I'd better have something substantial to eat so made myself and ate a potato bake (on a very empty stomach). stood up , got dizzy and fell to the floor. I've asked my kids about the events that they witnessed and they insisted there were no convulsions.
I had been on Keppra 250 but it was the most horrible experience, I felt tranquillized but at the same time my whole body was constantly tensed up. I could barely feed my kids toast for dinner, but, as a Mum, I persevered. I explained this to my neuro who dismissed anything I said and told me to take DOUBLE the dose!!! I tried, but it was impossible to function as a human. I told my GP and he said to stop the meds. I did - gladly. I now felt normal again.
The last episode was in September 2021. I had just got a new job in a factory working a very labour-intensive job sanding cupboards, the amount of sweat and energy needed, I still kept losing weight no matter how much I tried to eat ( got down to 43kg). one hot day, I was feeling really thirsty, I just couldn't quench it. I started getting dizzy and got the grey veil again. The next thing I know, my co-workers were standing around me and I wondered why I was on the ground. When the ambulance officers got there, they asked me the usual questions and the same thing about my mouth not wanting to work, even though I knew exactly where I was and what was going on. My inability to answer properly keeps coming up on my records as being confused and disorientated, but I wasn't. It was like having a page on the computer screen and trying to print it out but the printer gets jammed.
Anyway. I realized now that I have a problem with eating and push myself to eat a regular time. I still sometimes get sidetracked but I am much better at calorie intake and have not had any episodes since. My second neuro now has me on 50mg levicam which has much fewer side effects, but I feel like I have syncope and not epilepsy and I don't really want to take medication if it really isn't needed. I do still take the levicam because I'm not an expert and would rather be safe than sorry, but this has never felt like epilepsy but no one seems to think that the diagnosis might be wrong and is saying I'm in denial. I don't deny that I might have epilepsy, it's only because I like to understand things and what has happened to me doesn't seem to fit the usual stories for seizures.
Does anyone have similar issues?