Autism and Seizures

[Mumble]

Hello everyone - Sorry I've been away a while, I've been unwell.

 

This is possibly not strictly ASD related, but they interact so I hope some people here have some experiences/ideas that can help me because I'm feeling very alone and very frightened.

 

I've always had what has been labelled as 'abnormal electrical activity' in my brain (dx'ed through EEGs, MRI) but it's never had any implications for me. Unfortunately, about 6 weeks ago I got meningitis and the resultant inflammation in my brain has triggered some after effects. I have been having regular, sometimes several a day and night, seizures - both full followed by periods of unconsciousness and partial. I'm black and blue (and yellow/green/purple/red) covered in bruises as I've had some nasty falls and having bit my tongue several times it's rather sore.

 

I'm getting very good medical care - at the moment we're still all hoping it's temporary and the inflammation is going down and the seizures will stop, although this hope is getting less every day when things get worse or there is no improvement. I'm having multiple tests and scans to rule out as many causes as possible because they don't want to assume it's due to the Meningitis when it could be an unfortunate coincidence. I see the consultant neurologist in just under two weeks when most things should have been ruled out and if it's going to stop by itself it should have I'm putting my hopes on it being temporary but I also have to be realistic that this may be longer term At the moment it's stupid things that upset me like no longer being allowed to go swimming which was one of my favourite activities.

 

I have a few questions:

• are there any links between ASDs and seizures that may make me more susceptible/make a temporary issue last longer than normal?
• are there any easy/written/visual ways to help me discuss what is happening with the consultant as I'm fining it really difficult to accurately answer questions for instance about how I feel before an episode
• does anyone have any tips for dealing with/after seizures and help recovery?
• how do I deal with other people - I've only told a few people - those who need to know who I live with - and some of the reactions haven't been what I expected - some people are avoiding me as if they're scared I'm going to explode or something

 

[Karen A]

Hello everyone - Sorry I've been away a while, I've been unwell.

 

This is possibly not strictly ASD related, but they interact so I hope some people here have some experiences/ideas that can help me because I'm feeling very alone and very frightened.

 

I've always had what has been labelled as 'abnormal electrical activity' in my brain (dx'ed through EEGs, MRI) but it's never had any implications for me. Unfortunately, about 6 weeks ago I got meningitis and the resultant inflammation in my brain has triggered some after effects. I have been having regular, sometimes several a day and night, seizures - both full followed by periods of unconsciousness and partial. I'm black and blue (and yellow/green/purple/red) covered in bruises as I've had some nasty falls and having bit my tongue several times it's rather sore.

 

I'm getting very good medical care - at the moment we're still all hoping it's temporary and the inflammation is going down and the seizures will stop, although this hope is getting less every day when things get worse or there is no improvement. I'm having multiple tests and scans to rule out as many causes as possible because they don't want to assume it's due to the Meningitis when it could be an unfortunate coincidence. I see the consultant neurologist in just under two weeks when most things should have been ruled out and if it's going to stop by itself it should have I'm putting my hopes on it being temporary but I also have to be realistic that this may be longer term At the moment it's stupid things that upset me like no longer being allowed to go swimming which was one of my favourite activities.

 

I have a few questions:

• are there any links between ASDs and seizures that may make me more susceptible/make a temporary issue last longer than normal?
• are there any easy/written/visual ways to help me discuss what is happening with the consultant as I'm fining it really difficult to accurately answer questions for instance about how I feel before an episode
• does anyone have any tips for dealing with/after seizures and help recovery?
• how do I deal with other people - I've only told a few people - those who need to know who I live with - and some of the reactions haven't been what I expected - some people are avoiding me as if they're scared I'm going to explode or something

 

<'> <'> .I missed you around here.I was hoping you were ok as I noticed you had not been on Forum for a while which is not like you.

I hope the consultant is able to help sort out what is going on.Karen.

[bid]

Really, really sorry to hear you are having such a tough time, Mumble

 

I work with children and young people with various conditions including ASD, the majority of whom have severe epilespy too...so I'll try to answer your questions wearing my professional head.

 

I have a few questions:

• are there any links between ASDs and seizures that may make me more susceptible/make a temporary issue last longer than normal?

  Unfortunately, there does seem to be an increased incidence of epilepsy with ASD, most typically at the more low-functioning end of the spectrum (sorry for the phrase, can't think of something better). This seems to be true for many conditions that have some degree of LDs too. In your case, it may be completely unrelated to your ASD and triggered by the menigitis?

• are there any easy/written/visual ways to help me discuss what is happening with the consultant as I'm fining it really difficult to accurately answer questions for instance about how I feel before an episode

  Probably the most useful thing would be if anyone else has witnessed your seizures and could write a description, or accompany you to see the neurologist. A dx of epilepsy is based on taking an accurate clinical history, relying heavily on descriptions of seizures. EEGs are used more to establish what kind of seizures are occuring or to identify an epilepsy syndrome. Plus, can you keep a seizure diary to see if they may be catamenial, i.e. linked with your menstrual cycle, or photosensitive, etc.

• does anyone have any tips for dealing with/after seizures and help recovery?

  One thing we do at work is to 'talk the individual out of a seizure'...basically by saying to the person something simple like 'Make it go away' or asking them about something they are looking forward to, you make their brain focus on something else which seems to interrupt the electrical activity that is causing the seizure. The seizure type really dictates what other people should do: if it is a generalised tonic-clonic seizure, the best thing is for them to put you in the recovery poisition until the seizure has stopped. If you are having partial seizures where you are not losing conciousness but may exhibit unusual behaviour, they just need to keep you safe. Nothing should ever be placed in the individuals mouth to stop them biting their tongue...just leave their mouths alone during a seizure!

  Generally, make sure you don't get too hot, as this can trigger seizures. Afterwards, just rest as much as you need.

• how do I deal with other people - I've only told a few people - those who need to know who I live with - and some of the reactions haven't been what I expected - some people are avoiding me as if they're scared I'm going to explode or something

  Have you contacted Epilepsy Action? I'm sure they have cards a bit like the NAS autism cards, or maybe leaflets you could give people to help educate them about seizures and what they should do to help you.

 

HTH <'>

 

Bid

Edited April 10, 2009 by bid

[baddad]

Blimey! Really sorry to hear you've been going through the mill <'>

I have no idea about the medical stuff, only to say that bid's post mentioning higher incidence etc across the board of disability generally is in line with what I've heard professionally. i'd also agree that as this is a new development for you it is more likely related to the meningitis...

Hope either way, it is a short term problem and that you are over it soon.

Nice to see you posting again too.

 

L&P

 

BD

[NickyB]

Mumble

 

I don't have any medical advice, I'm afraid - just wanted to send you lots of hugs

 

<'> <'> <'> <'> <'>

[barefoot wend]

Me too <'> <'>

[Mumble]

Thank you everyone

 

To answer some of what you have said, Bid:

I suspect it is probably related to the meningitis, not least because that's when it started and I've never had anything like this before. I was wondering if the ASD made me more susceptible to it being triggered (i.e. if an NT had the same experiences as me, would they have the same outcome?) - I'm really worried about getting the balance right when I see the consultant - I don't want them to hang it all on the ASD if it's something else going on but equally I don't want them not to explore that possibility if it is - erm, does that makes sense - I've confuzzled myself

 

I am completing a seizure diary - not always easy because I don't always know what's happened, but I'm doing it the best I can. There do seem to be some patterns, particularly with times of the day (about now being my 'safest' time ), it doesn't seem to be catamenial (which the doc did bring up to check I think prob because of other problems I've had). There's a potential photosensitive link as I have a number of partial seizures when working at the computer (doesn't exactly make my uni work easy ) but this isn't consistent as sometimes I'm fine and sometimes they happen at other times.

 

The most useful thing would be to take someone with me, but a)it's the holidays so there's very few people around and b)those that are around I've scared off. This is where having ASD and not having a close group of friends to draw on is very unhelpful They've asked me to try and video episodes but that's not easy as they're unpredictable - I leave my webcam running but it keeps killing my 'puter because of diskspace so if anyone has any clever ideas here I'd be grateful. I haven't told my sister as she has important uni exams coming up and I don't want to worry her, at least not till I know exactly what is going on. Thanks for explaining about when/how EEGs are used as I was a bit confused by that; I've had a CT as they wanted to rule out any growth that could be causing pressure - thankfully as far as they can tell (me don't like that phrase - I do certainties ) there's nothing to worry about there

 

may exhibit unusual behaviour

...and I thought my behaviour was 'unusual' enough before this; I've really stepped it up a gear now!

 

Have you contacted Epilepsy Action? I'm sure they have cards a bit like the NAS autism cards, or maybe leaflets you could give people to help educate them about seizures and what they should do to help you.

I haven't. The doctors haven't used the term 'epilepsy' only seizures (or the counsellor I've been seeing refers to them as fits but I think this is an older term). When I've briefly looked up info on seizures (thinking I might find something for others) all the sites referred to epilepsy and to be honest this really scared me and I found it difficult to read and until I definitely know what I'm dealing with (and hopefully it's nothing) I don't want to go down that route. I think what I'm finding really difficult is that with ASD and my ASD dx, I grew up in an ASD world (with my brother) and so it seems a normal thing, I know a lot about it and can generally tell which of the abundant info on the Internet is useful and which is a load of nonsense or even potentially dangerous. I can't do that with seizures because I have no knowledge base to start from. I suppose one good thing about that is that it's given me an idea of how parents who have newly dx'ed ASD kids who have no knowledge of ASD might feel.

 

 

One slightly odd question I wonder if anyone can help me with - since this has been happening, I've occasionally been 'losing' basic words (nothing technical, really basic everyday words) - I'll be talking to someone and there'll be a word I need that I just can't find:

Me: "Yesterday after I left the library I took the ... the, erm, the not a train home"

Other person: "Not a train??" (laughs)

Me: "Yes the, erm, big red thing on wheels"

Other person: "Bus?"

 

etc etc... I'm laughing it off but it's annoying and embarrassing Is this related and should I mention it to the docs (I don't want them to laugh at me )?

 

[bid]

There's a potential photosensitive link as I have a number of partial seizures when working at the computer (doesn't exactly make my uni work easy ) but this isn't consistent as sometimes I'm fine and sometimes they happen at other times.

 

From what I've just been reading for my coursework there shouldn't be a problem with computer screens, because they flicker at a much lower rate than TVs. Plus, with Windows you can alter the reflex rate.

 

Bid

Edited April 11, 2009 by bid

[Karen A]

Thank you everyone

 

.

 

 

One slightly odd question I wonder if anyone can help me with - since this has been happening, I've occasionally been 'losing' basic words (nothing technical, really basic everyday words) - I'll be talking to someone and there'll be a word I need that I just can't find:

Me: "Yesterday after I left the library I took the ... the, erm, the not a train home"

Other person: "Not a train??" (laughs)

Me: "Yes the, erm, big red thing on wheels"

Other person: "Bus?"

 

etc etc... I'm laughing it off but it's annoying and embarrassing Is this related and should I mention it to the docs (I don't want them to laugh at me )?

 

Hi.If the loss of basic words has developed since you had meningitis then it is very probably related to that.I am making a guess based on my general knowledge.People who have a stroke that effects particular parts of the brain sometimes experience the inability to remember particular words.They could say the words but the bit of the brain that helps with finding the words is not working as well as usual.It might be that the meningitis has had a similar effect.If that is the case it may well settle down as you recover.

I know it is easier said than done but please try not to worry.

Meningitis will have made you really quite poorly.So it may take a while to recover and get your strength back.

I am not sure that you should really be working on college work at all.I think you have been poorly enough to be able to qualify for a break.Also whether the seizures are related to the meningitis [which I think is most likely] or not you need to have plenty of rest and avoid stress.

Oh dear sorry if I sound like I am lecturing you with my ex nurse hat on. <'>

Yes do mention it to the docs.If they are neurologists they will know exactly what it is.They will not laugh at you and it is helpful information.Karen.

Edited April 11, 2009 by Karen A

[Tally]

I've read some research saying that around 90% of autistic people have seizure-type activity which shows up on an EEG, but far less than 90% of autistic people actually have epilepsy, or even one-off seizures. Their theory was that autistic people have extremely localised seizure activity which causes damage to very specific parts of the brain and results in autism.

 

If you already have abnormal activity, I would have thought that something like meningitis could well make it worse to the point that you are actually having seizures.

[jb1964]

Hi Mumble,

 

Hope you feel better soon - sounds like you've had a pretty rough time of it.

 

Don't have any advice about the meningitis part - although for the asd/seizure link - I know when my daughter was being investigated for epilepsy they said its common for people with asd's to have episodes that are very similar to epileptic seizures and that they needed to discount that first (by EEG's/MRI etc) - also I know that high temp. etc can cause seizures (similar to febrile convulsions in infants).

 

With reference to the 'losing basic words' thing - I'm not sure if that is a side effect from the meningitis - but it's definitely a description that's used a lot on the epilepsy forums - before and after a seizure my daughter can become very confused (not just as part of her asd it's something totally different), and this affects her thinking/memory and speech/co-ordination depending on the seizure - usually if she has a nap afterwards it makes her feel a little refreshed.

 

You mention that you think you've noticed a pattern - my daughter is worse on waking up and when she's tired or not well/stressed etc. I think plenty of sleep and rest is essential and fingers/toes crossed for you that the appt.'s all go well.

 

Take care,

Jb x

Edited April 11, 2009 by jb1964

[Mumble]

Meningitis will have made you really quite poorly.So it may take a while to recover and get your strength back.

I am not sure that you should really be working on college work at all.I think you have been poorly enough to be able to qualify for a break.

Thanks for your advice Karen . Unfortunately I created problems for myself because when I was asked about a week after I went to hospital how I was feeling, I said fine. This is the message college got and so expected me to be getting on as normal. Well I was feeling fine...I had a morphine pump and felt absolutely nothing at all (well a bit hyper - someone who knows me well said it was the most compliant they've ever seen me and asked if I could have it permanently! ). I took the docs literally and so got all sorts about how well I was doing etc... now I have to look after myself it's very different and I've been struggling and I'm too embarrassed to explain my mistake.

 

I've read some research saying that around 90% of autistic people have seizure-type activity which shows up on an EEG

Thanks Tally - if you know of any research I can read, that would be really helpful - finding out about the activity in my brain came about by chance when I had repeat EEGs following an accident several years ago - because initially they assumed my head injury had triggered something, but when they got the same results after I was stable, they just told me that that was me and I've never had an explanation for this activity.

 

before and after a seizure my daughter can become very confused (not just as part of her asd it's something totally different), and this affects her thinking/memory and speech/co-ordination depending on the seizure - usually if she has a nap afterwards it makes her feel a little refreshed.

 

You mention that you think you've noticed a pattern - my daughter is worse on waking up and when she's tired or not well/stressed etc. I think plenty of sleep and rest is essential and fingers/toes crossed for you that the appt.'s all go well.

Yep, there seems to be a sort of pattern and definitely I have more problems when tired, but the confusion before/after is a biggy for me - I've started to be able to tell with an increased degree of accuracy if something is about to happen - bit difficult to explain but it's a sort of 'sense' - somehow I need to work out how to explain it so I can tell the neurologist. I had a seizure yesterday when I was with the counsellor - freaked her out, but I don't have much awareness of what happened other than the 'odd' feeling and a much shortened session - but she's going to write a description for the neurologist which will be helpful.

 

[Kathryn]

No advice to add Mumble, but good to see you back and posting. <'>

 

K x

[Karen A]

Thanks for your advice Karen . Unfortunately I created problems for myself because when I was asked about a week after I went to hospital how I was feeling, I said fine. This is the message college got and so expected me to be getting on as normal. Well I was feeling fine...I had a morphine pump and felt absolutely nothing at all (well a bit hyper - someone who knows me well said it was the most compliant they've ever seen me and asked if I could have it permanently! ). I took the docs literally and so got all sorts about how well I was doing etc... now I have to look after myself it's very different and I've been struggling and I'm too embarrassed to explain my mistake

 

Hi Mumble.I have to say I did not get on well with morphine myself.[As prescribed after caesarean sections before anyone calls the police]

However there was some other stuff that was really very good. [Also prescribed ].

There is a huge difference between being on analgesia and doing well and being well enough to work at college work.

I would think your GP or the consultant at the hospital should be able to write a note like a sick note for work explaining that you are not well enough to be studying.

 

I have a slightly strange question but have been wondering for the last couple of days so don't think there is any harm in asking.

I know that you have had a history of panic attacks before when you have been out and become overloaded.I think maybe you called them meltdowns

Has anyone ever done an EEG before to make sure that they were not seizure related ?

I think that it can be difficult to tell the difference if an EEG has not been done.

I was just wondering whether it is possible that you have actually had a history of seizures and it has not been picked up.

I have had panic attacks myself and know they can make you feel and look pretty unwell.But although I have never had seizures I have nursed people who have.

Some of the symptoms you have described in the past could possibly have been the after effects of an absence type seizure.

I talked with a friend last year whos son has AS.My friend happened to observe her son having an episode of strange activity during the night because they were on holiday and were all in one room.When I listened to the description I advised her to talk to the Dr.It turned out her son had been having fits at night that were not picked up.

Her son had been finding it difficult to wake up in the mornings for a while.The night time seizures explained the reason.

So it is possible to be having seizures and nobody realise.

If you have not mentioned your previous history of meltdowns with the neurologist it might be worth mentioning them next time you have an apointment.

Edited to add that my friend had also been told that the turns her son was having were related to ASD and so not to worry but it did turn out as I said that the seizures required treatment.Karen.

Edited April 16, 2009 by Karen A

[bid]

Good thought from Karen

 

Plus, the 'feeling' you describe prior to a seizure is known as an 'aura'.

 

Bid

Edited April 16, 2009 by bid

[Karen A]

Good thought from Karen

 

Plus, the 'feeling' you describe prior to a seizure is known as an 'aura'.

 

Bid

 

Thanks bid.

I was worried people might think I was talking rubbish.

If you think there is some logic in my thinking that is good enough for me. Karen.

 

[bid]

Thanks bid.

I was worried people might think I was talking rubbish.

If you think there is some logic in my thinking that is good enough for me. Karen.

 

I wonder too if a simple partial seizure might present as you suggest...the individual doesn't lose consciousness and is aware of what is happening, but can behave very strangely. The first simple partial I saw I would never have known it was a seizure.

 

Anyway, just some more thoughts to perhaps raise with your neurologist, Mumbley <'>

 

Bid

Edited April 16, 2009 by bid

[Mumble]

There is a huge difference between being on analgesia and doing well and being well enough to work at college work.

I would think your GP or the consultant at the hospital should be able to write a note like a sick note for work explaining that you are not well enough to be studying.

I've got a very good GP who is in the process of helping me apply for an extension to my studies (this would have happened anyway as I was unwell previously - in fact quite possible that low immune system may be a factor in me getting meningitis - which is something I wouldn't wish even on my worst enemy - as students we're always told of the symptoms and have posters up in halls etc but I think having the vaccine kind of puts you off guard - I certainly didn't realise that the vaccine only protected you against one strain of one type - and I've gone back and read those posters as I always thought they were scare mongering but I can say they're definitely not now - in a space of three hours I went from feeling absolutely fine to being in resuscitation.

 

I have a slightly strange question but have been wondering for the last couple of days so don't think there is any harm in asking.

I know that you have had a history of panic attacks before when you have been out and become overloaded.I think maybe you called them meltdowns

Has anyone ever done an EEG before to make sure that they were not seizure related ?

I think that it can be difficult to tell the difference if an EEG has not been done.

I was just wondering whether it is possible that you have actually had a history of seizures and it has not been picked up.

I have had panic attacks myself and know they can make you feel and look pretty unwell.But although I have never had seizures I have nursed people who have.

Some of the symptoms you have described in the past could possibly have been the after effects of an absence type seizure.

I have had the opposite question asked - is it panic attacks (as they know I've had panic attacks)? The only answer I can give to that is that it certainly doesn't feel the same and isn't like anything I've experienced before, plus the fear/panic feeling I sometimes get now before this happens isn't like a panic attack fear where it's a fear of some immediate situation I'm in that I can't cope with - it's more a fear of something dreadful about to happen like a plane crashing

I did go to the doctor I think about a year ago because I was experiencing confusion and brief losses of time/awareness but unfortunately there was some old doctor standing in who really didn't listen or take me seriously (in fact he laughed and made some joke about students never concentrating ) so I've never mentioned it again (although it's been ongoing).

 

Plus, the 'feeling' you describe prior to a seizure is known as an 'aura'.

Isn't that something to do with spirits and energies and people giving off colours? (I'm not knocking it, just not something I personally believe in)

 

the individual doesn't lose consciousness and is aware of what is happening, but can behave very strangely.

How to you sort out that strange behaviour from just being Mumbley?! No, seriously, I do know what you mean and I find it quite scary because I am aware of doing a few odd things but uncontrolled. What I'm finding more scary at the moment is that it's becoming clear that I'm doing more where I'm not aware/conscious that I wasn't aware of (obviously... ) - one person saying something you can ignore, passengers getting up next to you because you're 'drunk', students making comments, things caught on camera that I have no knowledge of but are definitely me, things people I've had meetings with have said - it's all a bit much to be able to ignore.

 

I've had all the test results for all the stuff they check alongside that can cause similar problems (kidney function etc) and they've all come back clear - I'm not sure if that's good or not - I kinda wanted them to say, aha, your liver's wonky, take this tablet and you'll be fixed - I see the consultant next week and then I guess I'll know more.

 

[bid]

Isn't that something to do with spirits and energies and people giving off colours? (I'm not knocking it, just not something I personally believe in)

 

No, the feeling some individuals get prior to a seizure really is called an 'aura'!

 

Some people experience a specific taste or smell, others as you describe can get a general feeling of impending fear/doom.

 

See here:

 

http://www.epilepsy.org.uk/info/aura.html

 

Bid

 

[jb1964]

Hi Mumble,

 

With reference to the 'panic attack' thing - my daughter has both epilepsy and severe panic attacks which can be very similar in some respects - some of her panic attacks are not what I would ever call panic attacks to look at i.e. she doesn't hyperventilate or build up any sort of fear, they are either instant without any apparent trigger (although there usually is it's just so instant it's not apparent to me watching it) - or can happen if she gets sad, often she falls to the floor with her eyes closed and appears to be asleep although she can also fall and have her eyes wide open, she cannot talk or move but is usually aware. Afterwards she may not be able to walk or talk (or has severe slurred speech), for up to an hour.

 

She can now differentiate between the two - the epilepsy she feels different beforehand - she usually starts to feel sick, can get flashy black images before her eyes and is beginning to know she has to make herself safe - i.e. sit or lie down whenever possible, her mouth also feels very dry.

 

Hope you get sorted out soon - I think when you see the Neuro you should definitely mention that you saw your GP last year about these losses of time.

 

Take care,

Jb

 

 

 

 

[Tally]

The feeling of impending doom is a fairly classic feature of an aura. You should make sure you mention this to your doctor, and explain how it differs from how you feel when you have a panic attack. You've explained it very clearly in your post, so if saying it is difficult, you could copy that out and give it to him on a piece of paper.

[pookie170]

Oh, Mumble, I've got no medical knowledge to impart but just wanted to say how glad I am that you're recovering from the meningitis. This must be a rather scary and bewildering time for you, with the seizures, but I'll keep you in my thoughts and hope you get some answers or suchlike from your consultant next week. Try and get as much rest as you can, and take care of yourself hon. It's great to have you back here!

 

Esther x

[Mumble]

The consultant thinks it's epilepsy.

 

I've got to have three months of different tests - EEGs, sleep EEGs, MRIs (to see if I have a brain, apparently...), etc. I'm probably going to be admitted and wired up for observation and they're starting me on anti-seizure drugs as they're pretty certain that's what it is and want to give me some relief from my symptoms.

 

I'm so ###### scared. I want my mum.

 

I've got to reconsider my whole future now. They've already banned me from driving. How can I live in a little cottage in the middle of nowhere if I can't drive. Can't go on my driving holiday I had planned for the summer either. I'm not even allowed to cycle.

 

 

[baddad]

So sorry to hear that

 

Hope the consultant is mistaken, and that whatever is causing this proves short term and/or treatable...

 

I don't know much at all about epilepsy but i think, especially with something like a link with meningitis, it can be controlled and/or disappear completely(?) I seem to remember reading statistics that pretty much everyone has at least one seizure in their life, but this goes unnoticed because of the timing and the fact that there is no recurrence in the short term to highlight it... That was a long time ago though, (the research i refer to), so don't quote me on it...

 

very best

 

BD

[bid]

The consultant thinks it's epilepsy.

 

I've got to have three months of different tests - EEGs, sleep EEGs, MRIs (to see if I have a brain, apparently...), etc. I'm probably going to be admitted and wired up for observation and they're starting me on anti-seizure drugs as they're pretty certain that's what it is and want to give me some relief from my symptoms.

 

I'm so ###### scared. I want my mum.

 

I've got to reconsider my whole future now. They've already banned me from driving. How can I live in a little cottage in the middle of nowhere if I can't drive. Can't go on my driving holiday I had planned for the summer either. I'm not even allowed to cycle.

 

<'> <'> <'>

 

I'm not surprised you are feeling like this at the moment...it's a big thing to have to take on board.

 

The important thing to remember is that for the vast majority of people with epilepsy their seizures are completely or almost completely controlled by anti-epilepsy drugs. Yes, it's a major bugg*r, but you will now get to the bottom of your seizures/worrying experiences and start on a plan of action to ensure you are as seizure-free as possible.

 

Have you looked at Epilepsy Action?

 

http://www.epilepsy.org.uk/

 

I know they also have volunteers who have epilepsy themselves who can be a great source of support and information.

 

Bidxx

Edited April 23, 2009 by bid

[Kathryn]

One step at a time Mumble, wait for the outcome of the investigations. Try not to panic.

 

Thinking of you

 

<'>

 

K x

 

 

[Karen A]

<'> <'> Mumble.Thinking of you.As Kathryn says please do try not to panic.You may feel loads better once the medication is sorted out.Karen.

[Tally]

Mumble, it's probably not as bad as it feels right now.

 

You need to be seizure-free for one year before you will be allowed to drive again. Epilepsy can often be well-managed with medication. It does seem like this was triggered off by the meningitis, so you might find the seizures tail off naturally anyway. All in all, you stand a good chance of being able to drive again. I'm sorry your summer holiday has not worked out.