Hi all
Since diagnosis of Focal Epilepsy 2 weeks ago, have continued with my obsessive reading and as I read more I recognise myself more but also few things coming into query To recap on newbie post - have probably been having them for around 4 years I know (got CT scan around 4 years ago related to the 'weird' episodes I went to GP for) but only kept any notes for the last 2 years suggesting that before this it wasn't an issue
My SPS symptoms do seem mainly temporal lobe related- deja vu, rising feeling with nausea and accompanying anxiety and generally feeling off colour after. Some metallic taste at times. Have read that TLE later in life can be related to brain abnormality and damage to/from hippocampus but to get MRI and EEG in any case so will need to park that thought for now . A few queries for those who get them however , if I may?
CLUSTERS
I read that SPS are the type less likely to present in clusters but mines ONLY present in clusters. I have read that clusters in a day can be counted as one seizure episode and know its apparently the initial seizure that causes the brain excitability that sparks clusters. However, my diary records have highlighted that there have been around up to 5 x day. for max of 3 days. Then they don't come back for 5 or 6 months hence the query on need for any medication. In a cruel twist of fate post diagnosis I have been having them all day today- 4 so far. All the same type and duration. It has however been 6 months since my last ones. I have mentioned clusters to Neuro and not sure if he picking this up from me as consecutive days , or in fact clusters across the day. He didn't seem to mention it as a problem either way.
They are just horrid but am not keen on meds at this time until post MRI and EEG. Just wondering if anyone has similar SPS experiences
Is a gap this long usual?
AURAS or SPS?
I know SPS are auras for those with CPS or generalised seizures but can you get Auras with SPS or is anything weird just part of the seizure itself. Yesterday morning I woke up in the morning and had what I can only describe as 'chattering' in my brain. I don't physically hear anyone speaking but its like a phrase is being repeated in the background. I did wonder yesterday if I was going to have a day of SPS but didn't - but have today. I get this in between SPS and often right before the deja vu and intense nausea/occasional hot flush but not sure if this is actually part of the seizure (in which case I am having more SPS within the cluster than I think though it would be a stand alone thing) or if it's actually an aura to SPS. So today was clearing out the kitchen, the chattering started and then bang - usual SPS symptoms
However, few times today have felt strange but almost as if I have managed to 'stop' it rising into the usual seizure. Again, is this seizure or an aura or what?
Sorry for the questions. I have read lots and recognised myself in lots of the SPS symptoms for some time but the other strange stuff is referred to less, hence keen for the anecdotal stuff and peer experiences
Thanks a lot x
Since diagnosis of Focal Epilepsy 2 weeks ago, have continued with my obsessive reading and as I read more I recognise myself more but also few things coming into query To recap on newbie post - have probably been having them for around 4 years I know (got CT scan around 4 years ago related to the 'weird' episodes I went to GP for) but only kept any notes for the last 2 years suggesting that before this it wasn't an issue
My SPS symptoms do seem mainly temporal lobe related- deja vu, rising feeling with nausea and accompanying anxiety and generally feeling off colour after. Some metallic taste at times. Have read that TLE later in life can be related to brain abnormality and damage to/from hippocampus but to get MRI and EEG in any case so will need to park that thought for now . A few queries for those who get them however , if I may?
CLUSTERS
I read that SPS are the type less likely to present in clusters but mines ONLY present in clusters. I have read that clusters in a day can be counted as one seizure episode and know its apparently the initial seizure that causes the brain excitability that sparks clusters. However, my diary records have highlighted that there have been around up to 5 x day. for max of 3 days. Then they don't come back for 5 or 6 months hence the query on need for any medication. In a cruel twist of fate post diagnosis I have been having them all day today- 4 so far. All the same type and duration. It has however been 6 months since my last ones. I have mentioned clusters to Neuro and not sure if he picking this up from me as consecutive days , or in fact clusters across the day. He didn't seem to mention it as a problem either way.
They are just horrid but am not keen on meds at this time until post MRI and EEG. Just wondering if anyone has similar SPS experiences
Is a gap this long usual?
AURAS or SPS?
I know SPS are auras for those with CPS or generalised seizures but can you get Auras with SPS or is anything weird just part of the seizure itself. Yesterday morning I woke up in the morning and had what I can only describe as 'chattering' in my brain. I don't physically hear anyone speaking but its like a phrase is being repeated in the background. I did wonder yesterday if I was going to have a day of SPS but didn't - but have today. I get this in between SPS and often right before the deja vu and intense nausea/occasional hot flush but not sure if this is actually part of the seizure (in which case I am having more SPS within the cluster than I think though it would be a stand alone thing) or if it's actually an aura to SPS. So today was clearing out the kitchen, the chattering started and then bang - usual SPS symptoms
However, few times today have felt strange but almost as if I have managed to 'stop' it rising into the usual seizure. Again, is this seizure or an aura or what?
Sorry for the questions. I have read lots and recognised myself in lots of the SPS symptoms for some time but the other strange stuff is referred to less, hence keen for the anecdotal stuff and peer experiences
Thanks a lot x