Discussion
Hi
I am going to write this to see if anyone has had anything similar and to keep a diary of what is happening.
Just gone midnight on Friday 8th December I had a seizure, from what I can remember and have been told, I sat up in bed, made some groaning and moaning noises, fell out of bed and was unconsious. Next thing I remember was the two amazing paramedics in our bedroom trying to coax me out from under the bed. I was utterly confused and kept asking them and my wife what they were doing here and what had happened.
Went in the back of an ambulance to the hospital and the tests began:
CT Head, MRI head, etc
They found a pineal cyst but there was no concerning issues around it. When I settled down in the hospital I felt fine, the worse thing was I managed to rip my toe nail off when I came out of bed, and it was that that was causing most of the issue!
I came home on the saturday night and carried on, I have been put on Lamotrigine tablets but this is where the issues are starting.
They are giving me awful side affects, major headaches, dizziness and slight nausea, all this is to be expected but it is not pleasant. I have also had to give up my driving license for a minimum of 6 months. I am signed off work for a while.
Now that I am set at home the reality of it all is starting to dawn on me and I am petrified.
I don't know what this means for the future and I am hoping my present state and forgetfullness is temporary and just my brain re-arranging itself.
Bloody hell this is scary.
Anyway I will update as I go.
Happy christmas!
I am going to write this to see if anyone has had anything similar and to keep a diary of what is happening.
Just gone midnight on Friday 8th December I had a seizure, from what I can remember and have been told, I sat up in bed, made some groaning and moaning noises, fell out of bed and was unconsious. Next thing I remember was the two amazing paramedics in our bedroom trying to coax me out from under the bed. I was utterly confused and kept asking them and my wife what they were doing here and what had happened.
Went in the back of an ambulance to the hospital and the tests began:
CT Head, MRI head, etc
They found a pineal cyst but there was no concerning issues around it. When I settled down in the hospital I felt fine, the worse thing was I managed to rip my toe nail off when I came out of bed, and it was that that was causing most of the issue!
I came home on the saturday night and carried on, I have been put on Lamotrigine tablets but this is where the issues are starting.
They are giving me awful side affects, major headaches, dizziness and slight nausea, all this is to be expected but it is not pleasant. I have also had to give up my driving license for a minimum of 6 months. I am signed off work for a while.
Now that I am set at home the reality of it all is starting to dawn on me and I am petrified.
I don't know what this means for the future and I am hoping my present state and forgetfullness is temporary and just my brain re-arranging itself.
Bloody hell this is scary.
Anyway I will update as I go.
Happy christmas!
First things first, you are NOT alone with this.
Me, I've suffered similar which turned out to be a heart issue which also turns out to be easily mistaken for seizures.
I've done three lots of six months off driving as a result of it, which believe it or not (on PH) doesn't bother me that much as my main episode was behind the wheel.
A few tips for you;
Push for as many tests and a formal diagnosis as hard as possible. My experience has alays been that whilst you are in immediate danger they are fantastic but tend to lose interest a bit once you are stable.
Learn your condition (if known) or research what it might be as much as possible so you can ask relevant questions when the quacks come and see you. But DON'T get too obsessed with Dr Google, he is a very bad boy and the next thing you know you'll diagnose yourself with ebola or something stupid. Be wise with your research.
If you are still in hospital, make sure you choose the higher fibre meals. It is easy to get stodged up.
Also if you are still in hospital and if they have no objections, get up and walk around, or hobble in your case, as much as possible, talk to the fellow inmates! It really helps.
It is quite normal to feel utterly hopeless and very sorry for yourself and it is completely normal. It WILL pass.
Buy a push bike (or four like I have) and use it. Unless you are right out in the sticks, they are an incredibly efficient way to get around.
Medication wise (I'm not on what you are but am on some pretty evil heart stuff), the good stuff can knock you for six for a while, that should pass and normality should return.
Time is always the best healer.
And again, remember you are NOT alone.
Me, I've suffered similar which turned out to be a heart issue which also turns out to be easily mistaken for seizures.
I've done three lots of six months off driving as a result of it, which believe it or not (on PH) doesn't bother me that much as my main episode was behind the wheel.
A few tips for you;
Push for as many tests and a formal diagnosis as hard as possible. My experience has alays been that whilst you are in immediate danger they are fantastic but tend to lose interest a bit once you are stable.
Learn your condition (if known) or research what it might be as much as possible so you can ask relevant questions when the quacks come and see you. But DON'T get too obsessed with Dr Google, he is a very bad boy and the next thing you know you'll diagnose yourself with ebola or something stupid. Be wise with your research.
If you are still in hospital, make sure you choose the higher fibre meals. It is easy to get stodged up.
Also if you are still in hospital and if they have no objections, get up and walk around, or hobble in your case, as much as possible, talk to the fellow inmates! It really helps.
It is quite normal to feel utterly hopeless and very sorry for yourself and it is completely normal. It WILL pass.
Buy a push bike (or four like I have) and use it. Unless you are right out in the sticks, they are an incredibly efficient way to get around.
Medication wise (I'm not on what you are but am on some pretty evil heart stuff), the good stuff can knock you for six for a while, that should pass and normality should return.
Time is always the best healer.
And again, remember you are NOT alone.
colin_p said:
First things first, you are NOT alone with this.
Me, I've suffered similar which turned out to be a heart issue which also turns out to be easily mistaken for seizures.
I've done three lots of six months off driving as a result of it, which believe it or not (on PH) doesn't bother me that much as my main episode was behind the wheel.
A few tips for you;
Push for as many tests and a formal diagnosis as hard as possible. My experience has alays been that whilst you are in immediate danger they are fantastic but tend to lose interest a bit once you are stable.
Learn your condition (if known) or research what it might be as much as possible so you can ask relevant questions when the quacks come and see you. But DON'T get too obsessed with Dr Google, he is a very bad boy and the next thing you know you'll diagnose yourself with ebola or something stupid. Be wise with your research.
If you are still in hospital, make sure you choose the higher fibre meals. It is easy to get stodged up.
Also if you are still in hospital and if they have no objections, get up and walk around, or hobble in your case, as much as possible, talk to the fellow inmates! It really helps.
It is quite normal to feel utterly hopeless and very sorry for yourself and it is completely normal. It WILL pass.
Buy a push bike (or four like I have) and use it. Unless you are right out in the sticks, they are an incredibly efficient way to get around.
Medication wise (I'm not on what you are but am on some pretty evil heart stuff), the good stuff can knock you for six for a while, that should pass and normality should return.
Time is always the best healer.
And again, remember you are NOT alone.
thanks colin, since writing the above post I have had a shower, done the washing and moved about a bit and I feel much better. I can see that the key to getting better quickly is to keep moving and do the household stuff. I feel a bit dizzy now but I can handle that. Off to the docs this afternoon to double check my meds are ok and then an another appointment on Monday.Me, I've suffered similar which turned out to be a heart issue which also turns out to be easily mistaken for seizures.
I've done three lots of six months off driving as a result of it, which believe it or not (on PH) doesn't bother me that much as my main episode was behind the wheel.
A few tips for you;
Push for as many tests and a formal diagnosis as hard as possible. My experience has alays been that whilst you are in immediate danger they are fantastic but tend to lose interest a bit once you are stable.
Learn your condition (if known) or research what it might be as much as possible so you can ask relevant questions when the quacks come and see you. But DON'T get too obsessed with Dr Google, he is a very bad boy and the next thing you know you'll diagnose yourself with ebola or something stupid. Be wise with your research.
If you are still in hospital, make sure you choose the higher fibre meals. It is easy to get stodged up.
Also if you are still in hospital and if they have no objections, get up and walk around, or hobble in your case, as much as possible, talk to the fellow inmates! It really helps.
It is quite normal to feel utterly hopeless and very sorry for yourself and it is completely normal. It WILL pass.
Buy a push bike (or four like I have) and use it. Unless you are right out in the sticks, they are an incredibly efficient way to get around.
Medication wise (I'm not on what you are but am on some pretty evil heart stuff), the good stuff can knock you for six for a while, that should pass and normality should return.
Time is always the best healer.
And again, remember you are NOT alone.
Thanks for your advice, I will push the doctors for everything I can.
Happened to me this year. 3 nocturnal seizures a few weeks apart. CT/MRI/cerebral angiogram. Nothing awful to see (I thought I had cancer/stroke).
Now on lamotrigine and tolerating it well. Had to give back the car (PCP) and can't drive for a year after the first fit. DVLA says 12m as long as the fits are all nocturnal. It has takn me a while to accept that I am an epi, but it could have been a great deal worse, and it has made me take stock of what is important. Good luck with your journey.
Now on lamotrigine and tolerating it well. Had to give back the car (PCP) and can't drive for a year after the first fit. DVLA says 12m as long as the fits are all nocturnal. It has takn me a while to accept that I am an epi, but it could have been a great deal worse, and it has made me take stock of what is important. Good luck with your journey.
GordonBennett said:
Happened to me this year. 3 nocturnal seizures a few weeks apart. CT/MRI/cerebral angiogram. Nothing awful to see (I thought I had cancer/stroke).
Now on lamotrigine and tolerating it well. Had to give back the car (PCP) and can't drive for a year after the first fit. DVLA says 12m as long as the fits are all nocturnal. It has takn me a while to accept that I am an epi, but it could have been a great deal worse, and it has made me take stock of what is important. Good luck with your journey.
It has been a week since my first seizure. I feel ok and now starting to tolerate the Lamotrigine but it was heavy going over the first few days. I need to give up my license which I can cope with, i would be gutted if I have another and have to give up for 12 months.Now on lamotrigine and tolerating it well. Had to give back the car (PCP) and can't drive for a year after the first fit. DVLA says 12m as long as the fits are all nocturnal. It has takn me a while to accept that I am an epi, but it could have been a great deal worse, and it has made me take stock of what is important. Good luck with your journey.
I feel relatively normal today, slightly dizzy occasionally but I find it is better if I keep getting up and doing things, rather than sitting around.
Work have been brilliant and leaving it up to me as to when I go back, probably not till the new year.
sir humphrey appleby said:
It has been a week since my first seizure. I feel ok and now starting to tolerate the Lamotrigine but it was heavy going over the first few days. I need to give up my license which I can cope with, i would be gutted if I have another and have to give up for 12 months.
I feel relatively normal today, slightly dizzy occasionally but I find it is better if I keep getting up and doing things, rather than sitting around.
Work have been brilliant and leaving it up to me as to when I go back, probably not till the new year.
Take as much time off work as you are able. I found that the stress of try to deal with the uncertainty and dread fear of having another fit made me exhausted. Not being able to drive is a PITA but you soon adapt and I quite like being driven around by Mrs B. I've used this event to take the opportunity to lose weight, cut down on the booze and get fit (thanks to Mr Concept - get one!). Every cloud etc.... I feel relatively normal today, slightly dizzy occasionally but I find it is better if I keep getting up and doing things, rather than sitting around.
Work have been brilliant and leaving it up to me as to when I go back, probably not till the new year.
Time for an update of sorts..
In a week or so it will be 3 months since my seizure. I went back to work towards end of January.
Everything seems to be going ok, seem to get very tired and confused strangely, it's as if my brain suddenly stops for a couple of seconds and I cannot continue my conversation with work colleagues.
Talking of work, they have been very supportive and helpful, however I see on the horizon that it has the potential to get stressful quite quickly, which I do not handle at all well. I will need to deal with that and take what steps I feel necessary.
So no more seizures so far, touch wood. Medication seems to have settled down.
I am petrified of it happening again which probably is not doing me any good, and I am also very worried about going back to the hospital next week for CRT scans etc and if they find anything.
Nothing I can do about it, just need to chill out.
Cheers everyone.
In a week or so it will be 3 months since my seizure. I went back to work towards end of January.
Everything seems to be going ok, seem to get very tired and confused strangely, it's as if my brain suddenly stops for a couple of seconds and I cannot continue my conversation with work colleagues.
Talking of work, they have been very supportive and helpful, however I see on the horizon that it has the potential to get stressful quite quickly, which I do not handle at all well. I will need to deal with that and take what steps I feel necessary.
So no more seizures so far, touch wood. Medication seems to have settled down.
I am petrified of it happening again which probably is not doing me any good, and I am also very worried about going back to the hospital next week for CRT scans etc and if they find anything.
Nothing I can do about it, just need to chill out.
Cheers everyone.
I had one out of the blue 8 years ago. It turned out to be stress related, apparently. The initial diagnosis was a brain tumour. I spent 5 months sorting out my will, writing letters to my children, closing my business and so on. Fortunately, there was no tumour, and I live to regret a couple of the things I did when I was convinced I was going to die.
I surrendered my licence immediately, and didn't miss it as much as I'd imagined. I was able to employ a driver for work journeys, which clearly helped, and wasn't as expensive as I'd feared. I was able to be far more productive in the car than I had been previously. That said, I really disliked being driven for the first couple of months.
If I could offer any advice, it would be to take as much time as you can before you make any lasting decisions. I leaped to conclusions and made some mistakes that I still regret 8 years later, and probably will for the rest of my life. When you're convinced you're going to die at 40 years old, you can be a right arse.
Fingers crossed, it'll be a one off for you, as it was for me. Don't underestimate the psychological impact, though. It's an enormous shock, and takes time to get over. Good luck.
I surrendered my licence immediately, and didn't miss it as much as I'd imagined. I was able to employ a driver for work journeys, which clearly helped, and wasn't as expensive as I'd feared. I was able to be far more productive in the car than I had been previously. That said, I really disliked being driven for the first couple of months.
If I could offer any advice, it would be to take as much time as you can before you make any lasting decisions. I leaped to conclusions and made some mistakes that I still regret 8 years later, and probably will for the rest of my life. When you're convinced you're going to die at 40 years old, you can be a right arse.
Fingers crossed, it'll be a one off for you, as it was for me. Don't underestimate the psychological impact, though. It's an enormous shock, and takes time to get over. Good luck.
s2sol said:
I had one out of the blue 8 years ago. It turned out to be stress related, apparently. The initial diagnosis was a brain tumour. I spent 5 months sorting out my will, writing letters to my children, closing my business and so on. Fortunately, there was no tumour, and I live to regret a couple of the things I did when I was convinced I was going to die.
I surrendered my licence immediately, and didn't miss it as much as I'd imagined. I was able to employ a driver for work journeys, which clearly helped, and wasn't as expensive as I'd feared. I was able to be far more productive in the car than I had been previously. That said, I really disliked being driven for the first couple of months.
If I could offer any advice, it would be to take as much time as you can before you make any lasting decisions. I leaped to conclusions and made some mistakes that I still regret 8 years later, and probably will for the rest of my life. When you're convinced you're going to die at 40 years old, you can be a right arse.
Fingers crossed, it'll be a one off for you, as it was for me. Don't underestimate the psychological impact, though. It's an enormous shock, and takes time to get over. Good luck.
Thanks, it was a shock and still is. I can remember everything about it at the time, it sounds weird but I can remember looking at my arms and thinking they were on fire. Very weird.I surrendered my licence immediately, and didn't miss it as much as I'd imagined. I was able to employ a driver for work journeys, which clearly helped, and wasn't as expensive as I'd feared. I was able to be far more productive in the car than I had been previously. That said, I really disliked being driven for the first couple of months.
If I could offer any advice, it would be to take as much time as you can before you make any lasting decisions. I leaped to conclusions and made some mistakes that I still regret 8 years later, and probably will for the rest of my life. When you're convinced you're going to die at 40 years old, you can be a right arse.
Fingers crossed, it'll be a one off for you, as it was for me. Don't underestimate the psychological impact, though. It's an enormous shock, and takes time to get over. Good luck.
I do worry about the pyschological impact ,but I sometimes think I might be making a meal out of it and I should just be getting on with it, but anytime I get a headache or feel stressed I really worry.
I also feel that I need to apologise to people at work if I am not working at 100%.
Anyway, time will tell.
sir humphrey appleby said:
... confused strangely, it's as if my brain suddenly stops for a couple of seconds and I cannot continue my conversation with work colleagues.
Tell the docs about this (if you've not mentioned it before). Might not be easy to do, but ask your colleagues what you look like when this happens.I don't want to add to what is clearly a very stressful time for you, but this could be another type of seizure, or the start of, and I think at this stage of your journey not ignored.
Pinkie15 said:
Tell the docs about this (if you've not mentioned it before). Might not be easy to do, but ask your colleagues what you look like when this happens.
I don't want to add to what is clearly a very stressful time for you, but this could be another type of seizure, or the start of, and I think at this stage of your journey not ignored.
Golly, I hope not I don't want to add to what is clearly a very stressful time for you, but this could be another type of seizure, or the start of, and I think at this stage of your journey not ignored.
sir humphrey appleby said:
Golly, I hope not
I hope not for you, too. Hope it's just part of the process of your brain coming back to where it was. But please do discuss it with the doctors.It could also be a side-effect of the lamotrigine (assuming you're still on it). It may seem bizarre but anti-epileptic drugs can effectively treat one, or more, seizure types, but cause other seizure types to manifest themselves.
Another update then…
After an appointment with the Neurologist a week or so ago, I have been diagnosed with Periventricular Nodular Heretopia.
The seizure was an isolated sleep onset generalized tonic-clonic seizure. No, I am not too sure what that means either but essentially the Neurologist stated that significant stress at work leading to poor sleep for many months is an important contributory factor. It was also stated that I am at a high risk of another seizure over the next few months. He also stated that I cannot drive for a year rather than six months.
So of course I am worried about another seizure and googling the condition is terrifying so I will not be doing that again.
I am now back at work after six weeks off after the seizure. I was very stressed, anxious and generally in a bad state which my job contributed to.
When I came back I was plonked straight into a high profile, pressured IT project. The only concession work made upon my return was to let me work from home on a Monday in addition to a Wednesday, but even then they stated it would be temporary upon review.
The first email I read when I got back was exactly…’good to see you back…can you start working on XYZ… need to get moving quickly’
I had an occupational health review but that was a work sponsored one with someone at the end of the phone who had no experience of this condition. When I mentioned this to the Neurologist he was not impressed as he stated that he should do it and the work one would have no idea what had happened. So this is on its way and I look forward to receiving it.
Anyone else who is signed off work with various matters has a staged and managed return to work, such as reduced hours, less stressful workload etc.
This hasn’t happened in my case.
Whilst I don’t want to play the stress/anxiety card as I do want to work hard, the fact of the matter is that I was suffering from this beforehand and I am in no doubt that this caused it.
Now I am living with the very real threat that this can happen again without any warning whilst I am commuting from Southampton to London three times a week (six journeys in total), or in the office. I am having to explain myself to IT project managers which is embarrassing. My line manager is in another country and couldn’t be less bothered if he tried.
Am I being daft and just get on with it or do I need to push back in some way. Physically I am doing well, getting exercise and walking etc. Mentally I am very worried and concerned. I didn’t deal with stress and anxiety very well at all prior to this and the seizure and threat of a new is making it 10 times worse.
My colleagues that I work and sit with in the office are staggered that this is being handled in this manner.
Does anyone have thoughts or advice? Please tell me if I am being over sensitive.
After an appointment with the Neurologist a week or so ago, I have been diagnosed with Periventricular Nodular Heretopia.
The seizure was an isolated sleep onset generalized tonic-clonic seizure. No, I am not too sure what that means either but essentially the Neurologist stated that significant stress at work leading to poor sleep for many months is an important contributory factor. It was also stated that I am at a high risk of another seizure over the next few months. He also stated that I cannot drive for a year rather than six months.
So of course I am worried about another seizure and googling the condition is terrifying so I will not be doing that again.
I am now back at work after six weeks off after the seizure. I was very stressed, anxious and generally in a bad state which my job contributed to.
When I came back I was plonked straight into a high profile, pressured IT project. The only concession work made upon my return was to let me work from home on a Monday in addition to a Wednesday, but even then they stated it would be temporary upon review.
The first email I read when I got back was exactly…’good to see you back…can you start working on XYZ… need to get moving quickly’
I had an occupational health review but that was a work sponsored one with someone at the end of the phone who had no experience of this condition. When I mentioned this to the Neurologist he was not impressed as he stated that he should do it and the work one would have no idea what had happened. So this is on its way and I look forward to receiving it.
Anyone else who is signed off work with various matters has a staged and managed return to work, such as reduced hours, less stressful workload etc.
This hasn’t happened in my case.
Whilst I don’t want to play the stress/anxiety card as I do want to work hard, the fact of the matter is that I was suffering from this beforehand and I am in no doubt that this caused it.
Now I am living with the very real threat that this can happen again without any warning whilst I am commuting from Southampton to London three times a week (six journeys in total), or in the office. I am having to explain myself to IT project managers which is embarrassing. My line manager is in another country and couldn’t be less bothered if he tried.
Am I being daft and just get on with it or do I need to push back in some way. Physically I am doing well, getting exercise and walking etc. Mentally I am very worried and concerned. I didn’t deal with stress and anxiety very well at all prior to this and the seizure and threat of a new is making it 10 times worse.
My colleagues that I work and sit with in the office are staggered that this is being handled in this manner.
Does anyone have thoughts or advice? Please tell me if I am being over sensitive.
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