Hi all (again!)
Know this must come up time and time again , and sadly am no different. Last week on a first Neuro appointment (which am now calling a drive by) Neuro said I had focal epilepsy. This was almost a by the by situation and if I hadnt taken a line of questioning re constant claims of neuro symptoms always being put down to something else, EG , Migraine, we would have discussed this history I prob had first seizure 4 plus years ago, some since but in total probably around 6 -8 days in total in 4 years. I was told then in 2016 it wasn't seizures but atypical migraine so went merrily on my way.
Last week Consultant says on phone, ,after 30 min chat for first time. It's epilepsy. I accept this as it is my account of the funny turns that led to it. However, he advised me then to tell DVLA, noting in that in doing so he couldn't /wouldn't be able to change outcome. He also said he would send script to GP to start meds, if I WANT understanding why I might not re risks/benefits.
I have checked site and it outlines what constitutes a seizure, differences between day and night etc. It also notes that they should have been happening for more than 12 months for any review of license and also that you follow medical guidance(hah!). On reading this I realised I have had little guidance. Appt due in 8 weeks but its not a 'start some meds and we will review your epilepsy' appt but a follow up to initial one which is unrelated.
Anyhow, I called DVLA who said stop driving immediately and this would be for minimum 6 months though when I said it has been retrospectively likely 4 years she then said I need to stop for 12 months !
. They are sending out paperwork etc. I know they aren't medically trained so cant answer many of my questions about appeal of it if you don't lose consciousness which I can tell from online driving tools might be a possibility . However, of concern to me is that she says it will be up to consultant to tell them if I am safe. My concern is on many levels
- Wow can he possibly assess me given he doesn't know me/isn't necessarily 'my' neurologist (or is he..) and if so, will he just default and stick to the 6 months as he doesn't want to put his neck on the line. He's already as good as said 'DVLA is nothing to do with me'
-He is happy to diagnose epilepsy on basis of my personal account so will he be happy to take my account of max seizure numbers. no loss of consciousness etc
-Will I be seen as non compliant if not taking meds. He hasn't said I should and left it to me though I know doctors 'treat' so wont be against it. If so will this impact
He has so much power but for all that hasn't taken ownership of anything well enough. I have called his secretary asking him to call me re Driving and Medication but wondering re experiences of others, esp those with only SPS/Focal Onset. Am so upset and frustrated today.
I anticipated giving it up and know its the right thing to do pending assessment. Am just not sure now what 'assessment' now constitutes
Did others need to wait full 12 months post first seizure , how does it work if its retrospective assessment or different types of seizures
So sorry for the pity party if it appears this way. Just reflecting on the last few days now
Know this must come up time and time again , and sadly am no different. Last week on a first Neuro appointment (which am now calling a drive by) Neuro said I had focal epilepsy. This was almost a by the by situation and if I hadnt taken a line of questioning re constant claims of neuro symptoms always being put down to something else, EG , Migraine, we would have discussed this history I prob had first seizure 4 plus years ago, some since but in total probably around 6 -8 days in total in 4 years. I was told then in 2016 it wasn't seizures but atypical migraine so went merrily on my way.
Last week Consultant says on phone, ,after 30 min chat for first time. It's epilepsy. I accept this as it is my account of the funny turns that led to it. However, he advised me then to tell DVLA, noting in that in doing so he couldn't /wouldn't be able to change outcome. He also said he would send script to GP to start meds, if I WANT understanding why I might not re risks/benefits.
I have checked site and it outlines what constitutes a seizure, differences between day and night etc. It also notes that they should have been happening for more than 12 months for any review of license and also that you follow medical guidance(hah!). On reading this I realised I have had little guidance. Appt due in 8 weeks but its not a 'start some meds and we will review your epilepsy' appt but a follow up to initial one which is unrelated.
Anyhow, I called DVLA who said stop driving immediately and this would be for minimum 6 months though when I said it has been retrospectively likely 4 years she then said I need to stop for 12 months !
. They are sending out paperwork etc. I know they aren't medically trained so cant answer many of my questions about appeal of it if you don't lose consciousness which I can tell from online driving tools might be a possibility . However, of concern to me is that she says it will be up to consultant to tell them if I am safe. My concern is on many levels- Wow can he possibly assess me given he doesn't know me/isn't necessarily 'my' neurologist (or is he..) and if so, will he just default and stick to the 6 months as he doesn't want to put his neck on the line. He's already as good as said 'DVLA is nothing to do with me'
-He is happy to diagnose epilepsy on basis of my personal account so will he be happy to take my account of max seizure numbers. no loss of consciousness etc
-Will I be seen as non compliant if not taking meds. He hasn't said I should and left it to me though I know doctors 'treat' so wont be against it. If so will this impact
He has so much power but for all that hasn't taken ownership of anything well enough. I have called his secretary asking him to call me re Driving and Medication but wondering re experiences of others, esp those with only SPS/Focal Onset. Am so upset and frustrated today.
I anticipated giving it up and know its the right thing to do pending assessment. Am just not sure now what 'assessment' now constitutes
Did others need to wait full 12 months post first seizure , how does it work if its retrospective assessment or different types of seizures
So sorry for the pity party if it appears this way. Just reflecting on the last few days now
