Discussion
Yup. Horrible illness to have. I was diagnosed around 15 years ago, but after going through various anti-epileptic medications, found none worked so went through the hellish process of all the scans and tests to find I was a candidate for brain surgery.
It's been around 5 years since the surgery, which came with the pain I wouldn't wish upon my worst enemy. I've not had a seizure since so thank my lucky stars everyday.
Have you actually been diagnosed with epilepsy? Have you begun taking medication? If you drive unfortunately you'll need to surrender your licence to DVLA.
It's been around 5 years since the surgery, which came with the pain I wouldn't wish upon my worst enemy. I've not had a seizure since so thank my lucky stars everyday.
Have you actually been diagnosed with epilepsy? Have you begun taking medication? If you drive unfortunately you'll need to surrender your licence to DVLA.
Edited by Lannister902 on Saturday 8th January 01:02
I do but only during the night. Had around six in total and not for a few years so managed to get my licence back. I was fine once the doctor got the medicine right.
Takes it out of you when you have a seizure especially if you hurt yourself.
Hang in there mate! I found it helpful speaking to an Epilepsy Charity as they give good help.
Takes it out of you when you have a seizure especially if you hurt yourself.
Hang in there mate! I found it helpful speaking to an Epilepsy Charity as they give good help.
Yes - I was diagnosed with photo-sensitive (or 'flicker') epilepsy at 15 and am now 52.
I was put on medication fairly early (although this turned out to be one which would never now be recommended for a young female as I was). Fortunately, it has controlled my epilepsy reasonably well - there is also probably an element of my condition having a recognised stimulus which I can control to some extent.
I have had to surrender my driving licence a couple of times (the first time, the minimum time you had to be seizure-free was two years, but I hadn't passed my test at that stage). I got so used to not being able to drive, I didn't actually take my test until I was 27.
It's something I wish I didn't have, but I consider myself lucky that I don't have seizures on a daily basis as some do.
I was put on medication fairly early (although this turned out to be one which would never now be recommended for a young female as I was). Fortunately, it has controlled my epilepsy reasonably well - there is also probably an element of my condition having a recognised stimulus which I can control to some extent.
I have had to surrender my driving licence a couple of times (the first time, the minimum time you had to be seizure-free was two years, but I hadn't passed my test at that stage). I got so used to not being able to drive, I didn't actually take my test until I was 27.
It's something I wish I didn't have, but I consider myself lucky that I don't have seizures on a daily basis as some do.
andybracing said:
anyone else suffer, mine started a few ywears ago after a car crash and a head injury, last night i was out to the shop, walking obviously, and fell smashing my face big time
Have you looked into a keto diet - read up on it re epilepsyETA - https://epilepsysociety.org.uk/about-epilepsy/trea...
Yup, diagnosed with nocturnal epilepsy. I’m 50 now and can manage it pretty well. Have to avoid excess alchol, have a reasonable diet and must get decent amount of sleep. Cocked up on all 3 counts a few years back and had to stop driving for 12 months which was bloody hard work so won’t make that mistake again!
Started the week of my 16th birthday when I suddenly saw nowt but fireworks while watching tv from approximately 2 foot during a channel change, shouted my mum, passed out and woke up in the ambulance…
Various types and strength of tablets and a few more fits followed meaning my mates were all driving at 17 but I was 19 before I was allowed.
Since the first time, I’ve typically woken up feeling confused and then the terror sets in. The world gets hazy, my vision starts going haywire, total blackness clouds it and then along comes the fireworks and lightening. I try to call for help but words won’t come, I try to move a limb but they are locked solid. Nothing at all can stop my complete loss of cognitive control and my final memory is that it’s not even that I don’t know who I am - I don’t even know what I am.
I’ll wake out of it in about 10 minutes and be absolutely mentally and physically exhausted. There’s a fair chance I’ve badly bitten my tongue and I’ll have pulled pretty much every muscle in my body so that will take a week or so to recover.
I physically squirm when I see someone in a tv show having a seizure because I remember it so vividly.
But hey, it’s not so bad
Seriously, there’s worse conditions and I know I should be grateful because at least if I’m sensible I can manage this and live a normal life.
Started the week of my 16th birthday when I suddenly saw nowt but fireworks while watching tv from approximately 2 foot during a channel change, shouted my mum, passed out and woke up in the ambulance…
Various types and strength of tablets and a few more fits followed meaning my mates were all driving at 17 but I was 19 before I was allowed.
Since the first time, I’ve typically woken up feeling confused and then the terror sets in. The world gets hazy, my vision starts going haywire, total blackness clouds it and then along comes the fireworks and lightening. I try to call for help but words won’t come, I try to move a limb but they are locked solid. Nothing at all can stop my complete loss of cognitive control and my final memory is that it’s not even that I don’t know who I am - I don’t even know what I am.
I’ll wake out of it in about 10 minutes and be absolutely mentally and physically exhausted. There’s a fair chance I’ve badly bitten my tongue and I’ll have pulled pretty much every muscle in my body so that will take a week or so to recover.
I physically squirm when I see someone in a tv show having a seizure because I remember it so vividly.
But hey, it’s not so bad
Seriously, there’s worse conditions and I know I should be grateful because at least if I’m sensible I can manage this and live a normal life.
My father suffered really badly in his early 30s (trust me, there's little scarier as a young kid than seeing your father have a grand mal seizure), but has been seizure free for nigh on 40 years now, thanks to the drugs. Now in his mid-70s and still driving (only locally though), though he has been struggling with balance recently, which is a known side effect.
JonChalk said:
My father suffered really badly in his early 30s (trust me, there's little scarier as a young kid than seeing your father have a grand mal seizure), but has been seizure free for nigh on 40 years now, thanks to the drugs. Now in his mid-70s and still driving (only locally though), though he has been struggling with balance recently, which is a known side effect.
I feel for you. The thought of my own kids having to witness it has always been a constant worry. Had Epilepsy all my life. I was in and out of hospital for every test going in my younger years. I have chsnfed medication only 3 times in 37 years. The last time was at the start of the first lockdown. I had a couple of fits basically because the medication I had been on for 35 years was no longer effective and we switched to a different medication and so far have been fit free since.
I have had to hand in my licence 3 times over the years. Each time I have only been without it for the year and then got it back which is annoying. The hardest part was getting my lixence back this time as the dvla were so slow in processing my application I had to get my MP involved in the process and it took an extra 6 months due to dvla incompetence.
I have had to hand in my licence 3 times over the years. Each time I have only been without it for the year and then got it back which is annoying. The hardest part was getting my lixence back this time as the dvla were so slow in processing my application I had to get my MP involved in the process and it took an extra 6 months due to dvla incompetence.
I was diagnosed with epilepsy about 15 years ago.
I had three fits over the course of about three months, all upon waking up.
First one was the worst. Bit through my tongue and smashed my head open on the edge of the radiator by the bed. Lots of blood, which my wife coped with amazingly, looking after me and calling an ambulance. I have no recollection.
My short term memory was shot which made work difficult and I was banned from driving for approx 18 months.
I had loads of tests which could not find anything amiss. Put on drugs for epilepsy, which I eventually stopped. Completely abstained from drinking. Controlled my diabetes better. Although the diagnosis was epilepsy, I reckon I was having early morning hypos due to a slight change in medication about three months previous to the first fit. Only thing was, every time the ambulance attended my blood sugar was normal - but the body can call on glucose reserves from the liver in times of extreme hypo, thus spiking the blood sugar to normal levels after the fit. No medical peeps seemed to think this was possible.......so epilepsy was the diagnosis.
No rhyme or reason for it. But since early 2007, I have been fine. No reoccurrence.
I had three fits over the course of about three months, all upon waking up.
First one was the worst. Bit through my tongue and smashed my head open on the edge of the radiator by the bed. Lots of blood, which my wife coped with amazingly, looking after me and calling an ambulance. I have no recollection.
My short term memory was shot which made work difficult and I was banned from driving for approx 18 months.
I had loads of tests which could not find anything amiss. Put on drugs for epilepsy, which I eventually stopped. Completely abstained from drinking. Controlled my diabetes better. Although the diagnosis was epilepsy, I reckon I was having early morning hypos due to a slight change in medication about three months previous to the first fit. Only thing was, every time the ambulance attended my blood sugar was normal - but the body can call on glucose reserves from the liver in times of extreme hypo, thus spiking the blood sugar to normal levels after the fit. No medical peeps seemed to think this was possible.......so epilepsy was the diagnosis.
No rhyme or reason for it. But since early 2007, I have been fine. No reoccurrence.
sherman said:
The hardest part was getting my lixence back this time as the dvla were so slow in processing my application I had to get my MP involved in the process and it took an extra 6 months due to dvla incompetence.
The DVLA were dragging their heels on renewing mine but they told me that provided my doctor was satisfied my condition was stabilised (in my case, the neurologist signed me off) AND I’d completed the mandatory period of not driving since the seizure, I could start driving again despite the license not being yet renewed. (I did get confirmation in writing of that obviously. )Hopefully that might help someone else.
57Ford said:
sherman said:
The hardest part was getting my lixence back this time as the dvla were so slow in processing my application I had to get my MP involved in the process and it took an extra 6 months due to dvla incompetence.
The DVLA were dragging their heels on renewing mine but they told me that provided my doctor was satisfied my condition was stabilised (in my case, the neurologist signed me off) AND I’d completed the mandatory period of not driving since the seizure, I could start driving again despite the license not being yet renewed. (I did get confirmation in writing of that obviously. )Hopefully that might help someone else.
andybracing said:
the drugs dont seem to really work, and ive been on most of them, so im never going to drive aagain, and tbh im used to it now, i live in a town centre with good public transport so its not really a problem, plus i dont miss driving on our roads tody, no fun in it
Well thats a bit s
t. I have been through most tests going to get where I am today. Mg records run to at least 2 volumes
There are alot of options to try.
You may never get to drive again but at least you may get to the stage of not smashing your face in if or when you have a fit.
Thought I might try to reduce my medication.
Popped in for an EEG - one hour test.
Next day saw my neurologist. Considering the test was at a random time she was concerned to see the above.
That’s one page out of five.
Instead of reducing the medications I now have an adjunct on top.
I know I’ve had some bursts of deja-vu but this was not the result I was expecting.
Ten days of feeling nauseous and spaced out but the side effects have now gone.
Very annoying. Stupid brain!
jdw100 said:
Thought I might try to reduce my medication.
Popped in for an EEG - one hour test.
Next day saw my neurologist. Considering the test was at a random time she was concerned to see the above.
That’s one page out of five.
Instead of reducing the medications I now have an adjunct on top.
I know I’ve had some bursts of deja-vu but this was not the result I was expecting.
Ten days of feeling nauseous and spaced out but the side effects have now gone.
Very annoying. Stupid brain!
You hadnt had a coffee or high caffind drink before going in had you?
Interesting read all, no offence intended by I would love to ask a few questions.
My dog has idiopathic epilepsy (diagnosed after MRI and ruling everything else out) and we have really struggled to get it under control. He currently takes quite a high dose of Epiphen (Phenobarb) and is still having full seizures every 2-3 weeks. We've been struggling with it for nearly 2 years now and have got used to knowing what to do.
The reason I ask is that the vet said its the same as human epilepsy, no real reason (tumour etc), but is there a point with medication you just have to accept the frequency. I know some of you mentioned diet etc, does this help? I assume you mean healthy diet etc. He's obviously not on the booze!
Sorry to hijack thread and as mentioned, I hope no offence caused. It dawned on me that I could maybe learn something here!
Thanks
My dog has idiopathic epilepsy (diagnosed after MRI and ruling everything else out) and we have really struggled to get it under control. He currently takes quite a high dose of Epiphen (Phenobarb) and is still having full seizures every 2-3 weeks. We've been struggling with it for nearly 2 years now and have got used to knowing what to do.
The reason I ask is that the vet said its the same as human epilepsy, no real reason (tumour etc), but is there a point with medication you just have to accept the frequency. I know some of you mentioned diet etc, does this help? I assume you mean healthy diet etc. He's obviously not on the booze!
Sorry to hijack thread and as mentioned, I hope no offence caused. It dawned on me that I could maybe learn something here!
Thanks
Four Litre said:
Interesting read all, no offence intended by I would love to ask a few questions.
My dog has idiopathic epilepsy (diagnosed after MRI and ruling everything else out) and we have really struggled to get it under control. He currently takes quite a high dose of Epiphen (Phenobarb) and is still having full seizures every 2-3 weeks. We've been struggling with it for nearly 2 years now and have got used to knowing what to do.
The reason I ask is that the vet said its the same as human epilepsy, no real reason (tumour etc), but is there a point with medication you just have to accept the frequency. I know some of you mentioned diet etc, does this help? I assume you mean healthy diet etc. He's obviously not on the booze!
Sorry to hijack thread and as mentioned, I hope no offence caused. It dawned on me that I could maybe learn something here!
Thanks
Check to see if anything your feeding the dog has got any grapefruit in it. Grapefruit can stop medication being effective. My dog has idiopathic epilepsy (diagnosed after MRI and ruling everything else out) and we have really struggled to get it under control. He currently takes quite a high dose of Epiphen (Phenobarb) and is still having full seizures every 2-3 weeks. We've been struggling with it for nearly 2 years now and have got used to knowing what to do.
The reason I ask is that the vet said its the same as human epilepsy, no real reason (tumour etc), but is there a point with medication you just have to accept the frequency. I know some of you mentioned diet etc, does this help? I assume you mean healthy diet etc. He's obviously not on the booze!
Sorry to hijack thread and as mentioned, I hope no offence caused. It dawned on me that I could maybe learn something here!
Thanks
Try
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