Hello
I am new to this site and to epilepsy in general. My apologies, this is going to be a massive first post while I give you my backstory, because I am really confused about what is going on and don't even know if it is epilepsy.
My history is that I started having 'odd' neurological events across the winter of 2010/11. According to family and friends that witnessed them they appeared a little like TIAs. I sort of slumped, became confused and slurred if I tried to speak, began yawning excessively and developed painful tingling in my left hand and forearm.
My husband managed to video the tail end of one of these 'events' and dragged me to go to my doctor with it. She referred me to neurology straight away. Neurologist was puzzled, but ordered an MRI.
I had had an MRI done six years prior, ordered by the same neuro, due to complex migraine for which I had been given a course of Topiramate, but had to be taken off it due to the side-effects. I was found to have several white matter lesions at that time, and was tested for lupus, but found to be negative. I was also told the scan showed signs of recent encephalitis, which I was unaware I had had. My complex migraines never returned following the Topiramate treatment, but I continue to get very occasional, much milder migraines - until last month - when I had one almighty monster of a migraine.
When I went to get my MRI results I was told that they no longer had the results of my original MRI to make a comparison, but that there were multiple lesions present. At that point the neuro took an extended medical history and noticed a pattern of ill-health - for want of a better word - starting in my early twenties, with periods of extreme debilitation with cognitive fog etc, starting with an extended period of what was then diagnosed as Post Viral Fatigue, which resulted in me being bedridden for a couple of months. Neuro was concerned that the relapsing-like pattern of episodes, coupled with recent events might be suggestive of MS - so ordered VEPs and LP.
VEP and LP results were clear and at that point the Neuro told me my lesions would be atypical for MS, appearing more vascular in type, possibly the result of damage caused by my migraines. I was told they didn't know what had caused my episodes, but as they seem to have halted they would put me 12 month review and that was that.
Two months later I was having a much needed weekend away with my husband. I had planned and booked it myself and we were meeting all our old Uni friends there, so really looking forward to it.
On the day I woke up feeling 'odd'. Couldn't explain it, but told my husband I felt something wasn't right and I didn't want to go. He put it down to me being worried about leaving the kids and insisted we go. Felt worse and worse all the way there, stopped for some food and a coffee, arrived, checked in and I felt like the 'fear' feeling was building in me the whole while.
Had a couple of drinks with friends. I had one small cider, then stuck to non-alcoholic and went through to the restaurant about 6.30. That's when I suddenly felt as if the whole world kind of shot away from me and then sort of tilted (hard to explain). I told my husband I needed air and he took me outside - got outside and everything looked strange to me, then I felt really scared for no reason and he took me back to our room, where I lay down and closed my eyes until the feeling subsided a little. Tried to go back to the restaurant, but as soon as I arrived it happened again and I went back to the room and went to bed. Felt a strong need to sleep so told my husband to go back to our friends (we never get to see them, let alone a weekend away without the kids and I didn't want to spoil the weekend) and went to sleep.
About an hour later I woke up feeling really fearful, felt like I was either going to have a bad stomach or be sick, so made my way to the toilet. Sat down when I got there and the next thing I remember was waking up totally confused under the toilet bowl with my feet entangled in the chair opposite. I had several bumps on my head, including a sore eye-socket that later developed into a bruise. Lay there for a minute or two (haven't a clue how long) feeling really disorientated and confused, then hauled myself back onto the toilet and the same thing happened again, only this time I woke up on the other side of the bathroom, under the sink. Again really confused and disorientated, didn't know where I was etc. Lay still for a while, then gradually made my way back to our room across the corridor and text my husband who rushed back straight away. Next day I discovered bruises on both sides of my head, my eye socket, ankles and a huge black fist shaped bruise on the inside of my left upper-arm. (It wasn't like fainting, I've fainted a few times in my life an it's always the same, everything looks slivery and feel myself going, then kind of slither to the floor and when I wake up I know what has just happened.)
We were in the middle of nowhere and dh had had a drink or two, so couldn't get to a doctor and I was so exhausted I just wanted to sleep, so dh checked my pupils in case I had a concussion and sat up next to me while I slept.
Next day we called our out of hours doctor service and they told me to go straight to A&E, who moved me to AMU, who ordered EEG and MRI, told me they thought I'd had TC seizures and referred me back to my neurologist. Unfortunately I couldn't stay in hospital to have the tests, because I had to get back to the kids.
I then went home and spent the next three days stiff, aching and totally exhausted.
EEG 31st December - over a month from the suspected seizure - came back clear.
MRI 15 January - no significant changes to the one I had a year ago - report says "multiple focal signal changes in the deep white matter of both cerebral hemispheres and in the subcortical regions. Not significantly changed when compare to scan of 12 months ago. Lesions non-specific in appearance and may be due to small vessel ischemia, rather than demyelination - among other possible causes. No other definite intercranial abnormality."
I haven't had any more TCs, but since 18th December have been frequently waking between 4.45 and 5.30 in the morning with the same horrible feeling of dread, tingling/buzzing that kind of rises up through my body from my feet, stomach pain and nausea, then deep incessant yawning that is like a compunction that I can't control and accompanied with excessive eye watering. This then leads to burning, painful pins and needle type feelings in my left foot/calf and hand/arm which seem to creep up my limb and is really painful, feeling like when you have burned yourself on the oven shelf but all over my hand/arm and foot/calf. This is sometimes, but not always, accompanied by a feeling that my eyes are compulsively blinking, but quite slowly though - not flickering - but this only seems to happen when the 'event' goes on for longer. I tend to have roughly 3 of these in a row, followed by 3-4 smaller, shorter ones and am then totally exhausted, often sleeping until lunch time without waking.
Since this has been happening I have become more and more exhausted and needed a lot of help to do things like school runs for my kids (I have three school runs a day to do and it's all walking). I am having to rest for the whole of every weekend, just to be able to cope in the week.
Checked my diary before my neurology appointment today and I have had 23 of these 'events' since 18 December and they seem to cluster slightly around my monthly cycle. I am 42 years old and I suspect peri-menopausal (if that helps).
Saw a locum neurologist today for the first time since the TC event last November. He basically questioned whether it had happened at all, as there was no-one there to see it. Well er no ... but there were plenty of people who saw me become ill in the restaurant and lots of people saw the bruises and my husband saw what a state I was in afterwards.
He then said the nocturnal events don't sound like seizures, that you don't get nausea with seizures and they just don't seem seizure-like to him. He said he feels my MRI is normal for someone of my age (lesions have been there since I was 35) and in his opinion there is no evidence to suggest any neurological problems. He said I have had all the tests they can do and that the only thing left is medication, which he doesn't want to do without clinical evidence. (I don't want medication either if I can avoid it.)
I asked, as the events seem to cluster around my cycle, could it possibly be something hormonal rather than neurological and he muttered something about it being possible but unlikely, he then said the night-time episodes could be a type of migraine, but didn't present right and I had no significant head pain following them on every occasion so probably not. Also said they could be cardiac related - but again wrong presentation, so probably not.
Husband asked what he suggested we do then and he again went on about meds, but that he didn't want to go that route.
Then he started asking if I have a stressful life and suggested an ambulatory EEG. He said sleep deprived EEG wasn't advisable as the standard EEG had been clear - despite me telling him most of the events have happened after several days of disturbed sleep (I have three kids and a neurotic dog!).
So, basically I think he is thinking psychogenic seizures, but I am not stressed and have no history of trauma and my events are relatively small, only occur on waking and are pretty much restricted to sensory stuff, so it just doesn't seem to fit for me.
Huge thanks to anyone who has made it this far and apologies for writing such a massive essay.
I would be really grateful for anyone's thoughts and or advice.
(Just remembered, I told the neurologist today that I was diagnosed with complex regional pain syndrome in my left foot following an accident last year and the neuropathy I get with that is a similar feeling to what is happening to my hand/arm etc during the events. He told me this wasn't relevant because CRPS is physiological and doesn't originate in the brain, but I am confused by that, because CRPS is a malfunction of the sympathetic nervous system, which is controlled by the limbic system - in the brain. :-s)
I am new to this site and to epilepsy in general. My apologies, this is going to be a massive first post while I give you my backstory, because I am really confused about what is going on and don't even know if it is epilepsy.
My history is that I started having 'odd' neurological events across the winter of 2010/11. According to family and friends that witnessed them they appeared a little like TIAs. I sort of slumped, became confused and slurred if I tried to speak, began yawning excessively and developed painful tingling in my left hand and forearm.
My husband managed to video the tail end of one of these 'events' and dragged me to go to my doctor with it. She referred me to neurology straight away. Neurologist was puzzled, but ordered an MRI.
I had had an MRI done six years prior, ordered by the same neuro, due to complex migraine for which I had been given a course of Topiramate, but had to be taken off it due to the side-effects. I was found to have several white matter lesions at that time, and was tested for lupus, but found to be negative. I was also told the scan showed signs of recent encephalitis, which I was unaware I had had. My complex migraines never returned following the Topiramate treatment, but I continue to get very occasional, much milder migraines - until last month - when I had one almighty monster of a migraine.
When I went to get my MRI results I was told that they no longer had the results of my original MRI to make a comparison, but that there were multiple lesions present. At that point the neuro took an extended medical history and noticed a pattern of ill-health - for want of a better word - starting in my early twenties, with periods of extreme debilitation with cognitive fog etc, starting with an extended period of what was then diagnosed as Post Viral Fatigue, which resulted in me being bedridden for a couple of months. Neuro was concerned that the relapsing-like pattern of episodes, coupled with recent events might be suggestive of MS - so ordered VEPs and LP.
VEP and LP results were clear and at that point the Neuro told me my lesions would be atypical for MS, appearing more vascular in type, possibly the result of damage caused by my migraines. I was told they didn't know what had caused my episodes, but as they seem to have halted they would put me 12 month review and that was that.
Two months later I was having a much needed weekend away with my husband. I had planned and booked it myself and we were meeting all our old Uni friends there, so really looking forward to it.
On the day I woke up feeling 'odd'. Couldn't explain it, but told my husband I felt something wasn't right and I didn't want to go. He put it down to me being worried about leaving the kids and insisted we go. Felt worse and worse all the way there, stopped for some food and a coffee, arrived, checked in and I felt like the 'fear' feeling was building in me the whole while.
Had a couple of drinks with friends. I had one small cider, then stuck to non-alcoholic and went through to the restaurant about 6.30. That's when I suddenly felt as if the whole world kind of shot away from me and then sort of tilted (hard to explain). I told my husband I needed air and he took me outside - got outside and everything looked strange to me, then I felt really scared for no reason and he took me back to our room, where I lay down and closed my eyes until the feeling subsided a little. Tried to go back to the restaurant, but as soon as I arrived it happened again and I went back to the room and went to bed. Felt a strong need to sleep so told my husband to go back to our friends (we never get to see them, let alone a weekend away without the kids and I didn't want to spoil the weekend) and went to sleep.
About an hour later I woke up feeling really fearful, felt like I was either going to have a bad stomach or be sick, so made my way to the toilet. Sat down when I got there and the next thing I remember was waking up totally confused under the toilet bowl with my feet entangled in the chair opposite. I had several bumps on my head, including a sore eye-socket that later developed into a bruise. Lay there for a minute or two (haven't a clue how long) feeling really disorientated and confused, then hauled myself back onto the toilet and the same thing happened again, only this time I woke up on the other side of the bathroom, under the sink. Again really confused and disorientated, didn't know where I was etc. Lay still for a while, then gradually made my way back to our room across the corridor and text my husband who rushed back straight away. Next day I discovered bruises on both sides of my head, my eye socket, ankles and a huge black fist shaped bruise on the inside of my left upper-arm. (It wasn't like fainting, I've fainted a few times in my life an it's always the same, everything looks slivery and feel myself going, then kind of slither to the floor and when I wake up I know what has just happened.)
We were in the middle of nowhere and dh had had a drink or two, so couldn't get to a doctor and I was so exhausted I just wanted to sleep, so dh checked my pupils in case I had a concussion and sat up next to me while I slept.
Next day we called our out of hours doctor service and they told me to go straight to A&E, who moved me to AMU, who ordered EEG and MRI, told me they thought I'd had TC seizures and referred me back to my neurologist. Unfortunately I couldn't stay in hospital to have the tests, because I had to get back to the kids.
I then went home and spent the next three days stiff, aching and totally exhausted.
EEG 31st December - over a month from the suspected seizure - came back clear.
MRI 15 January - no significant changes to the one I had a year ago - report says "multiple focal signal changes in the deep white matter of both cerebral hemispheres and in the subcortical regions. Not significantly changed when compare to scan of 12 months ago. Lesions non-specific in appearance and may be due to small vessel ischemia, rather than demyelination - among other possible causes. No other definite intercranial abnormality."
I haven't had any more TCs, but since 18th December have been frequently waking between 4.45 and 5.30 in the morning with the same horrible feeling of dread, tingling/buzzing that kind of rises up through my body from my feet, stomach pain and nausea, then deep incessant yawning that is like a compunction that I can't control and accompanied with excessive eye watering. This then leads to burning, painful pins and needle type feelings in my left foot/calf and hand/arm which seem to creep up my limb and is really painful, feeling like when you have burned yourself on the oven shelf but all over my hand/arm and foot/calf. This is sometimes, but not always, accompanied by a feeling that my eyes are compulsively blinking, but quite slowly though - not flickering - but this only seems to happen when the 'event' goes on for longer. I tend to have roughly 3 of these in a row, followed by 3-4 smaller, shorter ones and am then totally exhausted, often sleeping until lunch time without waking.
Since this has been happening I have become more and more exhausted and needed a lot of help to do things like school runs for my kids (I have three school runs a day to do and it's all walking). I am having to rest for the whole of every weekend, just to be able to cope in the week.
Checked my diary before my neurology appointment today and I have had 23 of these 'events' since 18 December and they seem to cluster slightly around my monthly cycle. I am 42 years old and I suspect peri-menopausal (if that helps).
Saw a locum neurologist today for the first time since the TC event last November. He basically questioned whether it had happened at all, as there was no-one there to see it. Well er no ... but there were plenty of people who saw me become ill in the restaurant and lots of people saw the bruises and my husband saw what a state I was in afterwards.
He then said the nocturnal events don't sound like seizures, that you don't get nausea with seizures and they just don't seem seizure-like to him. He said he feels my MRI is normal for someone of my age (lesions have been there since I was 35) and in his opinion there is no evidence to suggest any neurological problems. He said I have had all the tests they can do and that the only thing left is medication, which he doesn't want to do without clinical evidence. (I don't want medication either if I can avoid it.)
I asked, as the events seem to cluster around my cycle, could it possibly be something hormonal rather than neurological and he muttered something about it being possible but unlikely, he then said the night-time episodes could be a type of migraine, but didn't present right and I had no significant head pain following them on every occasion so probably not. Also said they could be cardiac related - but again wrong presentation, so probably not.
Husband asked what he suggested we do then and he again went on about meds, but that he didn't want to go that route.
Then he started asking if I have a stressful life and suggested an ambulatory EEG. He said sleep deprived EEG wasn't advisable as the standard EEG had been clear - despite me telling him most of the events have happened after several days of disturbed sleep (I have three kids and a neurotic dog!).
So, basically I think he is thinking psychogenic seizures, but I am not stressed and have no history of trauma and my events are relatively small, only occur on waking and are pretty much restricted to sensory stuff, so it just doesn't seem to fit for me.
Huge thanks to anyone who has made it this far and apologies for writing such a massive essay.
I would be really grateful for anyone's thoughts and or advice.
(Just remembered, I told the neurologist today that I was diagnosed with complex regional pain syndrome in my left foot following an accident last year and the neuropathy I get with that is a similar feeling to what is happening to my hand/arm etc during the events. He told me this wasn't relevant because CRPS is physiological and doesn't originate in the brain, but I am confused by that, because CRPS is a malfunction of the sympathetic nervous system, which is controlled by the limbic system - in the brain. :-s)