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Medical Forum / Diseases and Disorders / Epilepsy / November 2004You ever have THESE symptoms?!
Hi, Has anybody experienced these kind of symptoms before? 1. When I'm driving on the freeway at night I start getting really dizzy and get a really bad headache. It has to do with the incoming headlight cars and the redlights in front of me. I have to really focus and I feel sick. My left foot becomes numb after about 20 minutes of driving for no reason. 2. Just sitting there and watching my friends talk for 5 minutes and all I hear from them is gibberish. "blah blah blah". I realize its gibberish and then my head starts attacking me for realizing it. 3. Forgetting the most simple words when speaking to people. I sound retarded now. I can't even make a complete sentence w/o pausing to think of words like "outlet" or "interesting". Just random 4. Walking along and I start talking gibberish for 2 or 3 seconds. Like I'm just silent then i'll go "blah blah blah". I can't control it though I know its coming out. It makes me look crazy. 5. The left side of my head feels like a rock sometimes. I can hit it and i won't feel anything 6. listening to my iPod for more then 10 minutes. I'll start getting really dizzy and I'll feel like I'm gonna black out. 7. sitting and watching tv and my right ear will have a LOUD ringing sound for no reason and then it will go away. 8. sitting for a few minutes and my hearing goes away for 2 or 3 seconds for no reason. 9. at work speaking to my boss about a problem i made...i feel like i'm gonna black out. 10. meeting new people makes me feeel like crap 11. waking up and feeling wierd everyday. not sure who you are anymore because of all the medication. yearn to remember what it felt like to be w/o drugs 12. typing one sentence and looking at it and it turns out to be completely different. spelling and grammar is all jacked up. 13. i have a job interview for a new position with better pay but i can't answer any questions because im always "UMMM UMM UMMm UMMIng" it because i cant think of any words. party because of stress and the other probably the topamax. 14. get a simple partial then running around like a bunny looking for a hole so no one knows you'll be convulsing in the middle of the mall. 15. always driving on the right side of road just IN CASE so you can pull over as quickly as you can. you also make sure to know where all the local streets are so you can convulse..get it over with and go home..even though it hasn't happened yet 16. have a doctor that has pushed your appointment to point where you haven't seen him in 4 months though you feel like shiet...even though its the best neurology center in the country...UCLA neuro...yah right. 17. stop hanging out with all your friends because they still drink beer and you get bored out of your mind watching them get drunk. 18. havent watched a movie in a theater since 2002 which really sucks since your a movie afficianado with 300 dvds. you cant because the flashing lights and the loud theatre speakers will make u collapse or give you a bad headache and any quick motions will want to make u throw up. you ever have any of these symptoms? i do and it makes my life suck bigheadache. > Hi, > [quoted text clipped - 5 lines] > focus and I feel sick. My left foot becomes numb after about 20 > minutes of driving for no reason. *snip* > 15. always driving on the right side of road just IN CASE so you can > pull over as quickly as you can. you also make sure to know where all [quoted text clipped - 4 lines] > > bigheadache. You drive a car when you have these kind of symptoms?? Do you know how it feels to kill someone? I do. It ruins your life - not to mention the lives of their family. I used to think I could get away with it, just like so many others with epilepsy do. I did exactly what you do. Drove on the left side of the road (we drive on the left here in New Zealand) so I could pull over in a hurry. Kept an eye out for streets I could "hide" in. But epilepsy isn't predictable. It WAS predictable for years for me but then without warning it changed and bang....a man was dead and I was getting hate mail from his wife who was left with four fatherless children. For months I would wake in the morning and sit crying on the side of the bed until I could gather myself together to get ready for work. I shudder to think what it was like for his family. Yes epilepsy sucks. It also means we can't drive until we no longer have seizures. Good luck. Darryl. >Yes epilepsy sucks. It also means we can't drive until we no longer have >seizures. Sorry to hear that it must be hell for both you & his family. However, the statement above is a bit of a sweeping statement, people with seizures only while asleep (and for a period of at least 3 years) can still drive *legally*, in the UK anyway. Howdy! Whether or not it's a sweeping statement depends on what the local law is re: driving with epilepsy.  SignatureDave ???? http://www.howdydave.com > >Yes epilepsy sucks. It also means we can't drive until we no longer have > >seizures. [quoted text clipped - 3 lines] > seizures only while asleep (and for a period of at least 3 years) can > still drive *legally*, in the UK anyway. Hello, It does not really matter what law says in these kind of situations when you are part in an accident caused by complex partial seizures or epilepsy that changed suddenly. You still get that "hate E-mail" that ruins your live / you still wake up in the morning :-( So, Darryl, are you saying that you were able to drive by law but your epilepsy "changed suddenly" or did I misunderstood. That really sucks, when you "think" you are controlled and then when years passes by, epilepsy changes suddenly without you knowing it causing an accident like this. That sucks man...you must have gone through hell. SignatureThanks. Marco The Netherlands Howdy! What I'm saying is that if there is a sweeping law where you happen to live (such as "nobody who has seizures can drive") then it isn't a sweeping statement, it's just telling you what the law says. SignatureDave ???? http://www.howdydave.com > Hello, > [quoted text clipped - 8 lines] > changes suddenly without you knowing it causing an accident like this. That > sucks man...you must have gone through hell. >Howdy! > >What I'm saying is that if there is a sweeping law where you happen to live >(such as "nobody who has seizures can drive") then it isn't a sweeping >statement, it's just telling you what the law says. Yes, but "it also means we can't drive until we no longer have seizures" is a sweeping statement when you post on the internet - we all have different laws and your doesn't necessarily apply to the rest of us! >>Howdy! >> [quoted text clipped - 6 lines] > is a sweeping statement when you post on the internet - we all have > different laws and your doesn't necessarily apply to the rest of us! Oh come on! >>>Howdy! >>> [quoted text clipped - 8 lines] > >Oh come on! Ok sorry, I just have a sore point about people always assuming that people with epliepsy cannot legally drive. No offence to anyone here, just had a bad day at work :-) Need a drink.... >>>>Howdy! >>>> [quoted text clipped - 12 lines] > people with epliepsy cannot legally drive. No offence to anyone here, just > had a bad day at work :-) Need a drink.... Have one on me - for beiong so good humoured about it :-) Mary >>Howdy! >> [quoted text clipped - 6 lines] > is a sweeping statement when you post on the internet - we all have > different laws and your doesn't necessarily apply to the rest of us! Is there a country which allows people who currently suffer from seizures, to drive? I think thats a country I'll recommend my friends and family stay away from. Same if they allow drunk people to drive I guess. Darryl. >Is there a country which allows people who currently suffer from seizures, >to drive? I think thats a country I'll recommend my friends and family stay >away from. Same if they allow drunk people to drive I guess. > >Darryl. Yes, it's called the UK, ever heard of it? The law states that if you *only* have seizures whilst asleep and have done so for a period of more than 3 years without ever having an awake seizure then you can continue to drive. >>Is there a country which allows people who currently suffer from seizures, >>to drive? I think thats a country I'll recommend my friends and family [quoted text clipped - 7 lines] > than 3 years without ever having an awake seizure then you can continue to > drive. "A person who has suffered an attack whilst asleep must also refrain from driving for one year from the date of the attack, unless they have had an attack whilst asleep more than three years ago and have not had any awake attacks since that asleep attack." http://www.dvla.gov.uk/at_a_glance/annex3.htm#ereg Mary Mary >"A person who has suffered an attack whilst asleep must also refrain from >driving for one year from the date of the attack, unless they have had an >attack whilst asleep more than three years ago and have not had any awake >attacks since that asleep attack." > >http://www.dvla.gov.uk/at_a_glance/annex3.htm#ereg Yes, that's the one thanks Mary. Although this doesn't really affect me nowadays as I haven't had a sleep attack for a long time (thankfully). The wording is confusing though, I had to get someone at the DVLA explain it to me ages ago. The "unless they have had an attack whilst asleep more than three years ago and have not had any awake attacks since that asleep" part says that you shouldn't have had any awake seizures for the past 3 years, but you may have had other sleep seizures in that period. Some people read it to say "unless they had their *last* attack whilst asleep more than three years ago" which is wrong. >The wording is confusing though, I had to get someone at the DVLA >explain it to me ages ago. The "unless they have had an attack whilst [quoted text clipped - 3 lines] >seizures in that period. Some people read it to say "unless they had >their *last* attack whilst asleep more than three years ago" which is wrong. Sorry to follow-up on my own post, but as usual, the British Epilepsy Association are clearer on their wording:- * you have been free from seizures completely for one year or * you have only experienced sleep seizures for a period of at least three years and *the DVLA/DVLNI is satisfied that as a driver you are not likely to be a source of danger to the public http://www.epilepsy.org.uk/info/driving.html#ukregs Howdy! Why are you zeroing your sites in on ME????? I didn't make the statement in the first place! SignatureDave ???? http://www.howdydave.com > >Howdy! > > [quoted text clipped - 5 lines] > is a sweeping statement when you post on the internet - we all have > different laws and your doesn't necessarily apply to the rest of us! LOL. Aim at me....I said it and I can take it. Darryl. > Howdy! > [quoted text clipped - 12 lines] >> is a sweeping statement when you post on the internet - we all have >> different laws and your doesn't necessarily apply to the rest of us! > LOL. Aim at me....I said it and I can take it. My aim isn't too good - because of the tremors. I might hit an innocent bystnder. Often wondered what that meant - who among us is totally innocent? Mary > > LOL. Aim at me....I said it and I can take it. > [quoted text clipped - 4 lines] > > Mary I AM! I AM!!!! SignatureDave ???? http://www.howdydave.com >> > LOL. Aim at me....I said it and I can take it. >> [quoted text clipped - 6 lines] > > I AM! I AM!!!! Oh. Hmm. You're not the man I thought you were in that case. <thinks> There's always Malcolm ;-) Mary > Howdy! > > Why are you zeroing your sites in on ME????? > > I didn't make the statement in the first place! It's what happens on Usenet, dinna fash y'sen aboot it. It happens to all the best people :-) Mary Well Marco, I was a bad boy when I got my license. They didn't ask if I have epilepsy, so I didn't tell them. My neurologist never asked if I drove, so I didn't tell him either. I don't know if they are supposed to inform the Land Transport Safety Authority ( In New Zealand that's what the DMV is called ), but apparently he didn't do that either, cos I never had any problems with it. I was however having several seizures a day, but because of the warning I always got, it felt safe for me to drive......stupid huh? I was always able to tell if I was going to have a seizure, and was able (I thought) to drive that way. It lasted for about 18 years until one day I had a seizure whilst driving, but had no warning at all that it was coming. It was only a minor seizure, which just caused my eyes to look different directions, but that was enough to cause me to go across the road and hit a pedestrian on the other side. It turned out he was the brother of a good friend of mine. The pedestrian's name was Gregg. I'm sorry Gregg - so sorry. Darryl. > Hello, > [quoted text clipped - 12 lines] > That > sucks man...you must have gone through hell. > Well Marco, I was a bad boy when I got my license. > They didn't ask if I have epilepsy, so I didn't tell them. Darryl, I'm not being at all judgemental here, I know how much you have and are still suffering and my hert goes out to you. I also hope that your experience might make someone else think. Part of that thinking is included in my question: If they HAD asked if you had epilepsy, would you have told them? I'm surprised that you weren't asked. I believe that you are in UK. Certainly, if I want to hire a vehicle or take our vehicle insurance I'm asked if I've ever suffered from epilepsy or had a seizure (among other conditions). I always answer truthfully - because if I didn't and were involved in an accident it would invalidate my insurance. But I always feel that I have to explain the circumstances in more detail. I've never been refused. Frankly, I don't know how much of this stuff is read, which is irresponsible on someone else's behalf. > My neurologist never asked if I drove, so I didn't tell him either. After my craniotomy I was told - I didn't think to ask - that I wouldn't be able to drive for two years. > I don't know if they are supposed to inform the Land Transport Safety > Authority ( In New Zealand that's what the DMV is called ), but apparently > he didn't do that either, cos I never had any problems with it. I was > however having several seizures a day, but because of the warning I always > got, it felt safe for me to drive......stupid huh? Yes. We're all stupid in some ways, we all think that we can do no wrong, that it's always someone else's fault. Even those who are in perfect health will never admit that their driving skills are anything less than perfect, unlike those of all other road users. <snip distressing story> > The pedestrian's name was Gregg. > I'm sorry Gregg - so sorry. So am I - for Gregg, his brother and for you, Darryl. And your family and other friends - these things impact on a wider circle of people than just the immediate victim. Ripples grow wider and don't seem to end ... I hope something might just stir in someone else's conscience by your story. My own story is that my father in law was having blackouts but was still driving. I was horrified because of the potential for accidents. After a lot of soul searching I reported it to our licensing authority, he was investigated and his licence withdrawn. He suspected it was me or his son and it ruined our relationship, he never forgave us and cut us out of his life. That was sad and my husband resented his Dad's estate going to his brother - but how would we have felt if Dad had killed someone? No amount of inheritance would have made up for that. Mary > Darryl. > [quoted text clipped - 14 lines] >> That >> sucks man...you must have gone through hell. >> Well Marco, I was a bad boy when I got my license. >> They didn't ask if I have epilepsy, so I didn't tell them. [quoted text clipped - 58 lines] > > Mary That must have been so hard a decision to make, knowing that it could (and ultimately did) affect your relationship like that. So many people would just let it go since it was a family member, but I agree that it would be worse if nothing had been done and someone had been hurt or killed. As for your question; yes I would have told them. I always answer honestly, even if it means missing out. Here in NZ, we are also asked if we have epilepsy etc, whenever hiring a car. Now that I don't drive it's Patsy who hires a car when needed, so it's not a problem. And whilst I was driving, the need to hire a car never arose. Kindest regards Darryl. "Daz_n_Pat" <daryl.gaye@paradise.net.nz> wrote in message news:zCrgd.23986>> > That must have been so hard a decision to make, knowing that it could (and > ultimately did) affect your relationship like that. Yes, I wanted to emphasise that where epilepsy is concerned there are many hard decisions to be made - but in the end they are the only honest things to do. > As for your question; yes I would have told them. I always answer > honestly, I'm pleased about that - but not surprised somehow. Mary > "Daz_n_Pat" <daryl.gaye@paradise.net.nz> wrote in message > news:zCrgd.23986>> [quoted text clipped - 12 lines] > > Mary Thank you Mary :-) Darryl. > My own story is that my father in law was having blackouts but was still > driving. I was horrified because of the potential for accidents. After a [quoted text clipped - 6 lines] > of > inheritance would have made up for that. I am truly sorry to hear that Mary. Though I do have contact with my parents, I do not have any contact with the rest of my family (this has nothing to do with my epilepsy though) which includes my brother and my sister in law so I can understand and feel how hard this must be. Especially during specific dates of the year when everyone meets their family again. I guess everyone "owns" their own story of sadness, happiness, etc. SignatureThanks. Marco The Netherlands > I guess everyone "owns" their own story of sadness, happiness, etc. Indeed. I don't think there's any sadness now, Father in Law has been dead for a few years. I was very sad at the time - for him. Spouse is resentful when he remembers - which isn't often - but I try to veer him away from that. Anger is destructive and nothing can change the past (we haven't much control over the future either) so I try to focus on the moment in hand. Over the years all our children have had spells of not talking to us, as kids do. They've all but one been restored to the fold. We used to lose sleep about that one but realised that it was fruitless, our wakeful nights couldn't solve whatever problenm was there when all our other attempts hadn't. It's sad but ... As you say, it's the family gatherings which make the absence more obvious. If we - and the rest of the family - only knew what the problem was we could try to resolve it. As it is we have anniversaries with a hole in the party. Mary > Hi, > [quoted text clipped - 71 lines] > > bigheadache. I think you need a physical exam with a regular doctor because you've got a real mix of symptoms there, and since some of your symtpoms are common symptoms of things other than epielpsy, your best bet would be to get a good physical exam to make sure you don't have something else going on like migraines. What kind of seizure disorder do you have and how long have you been diagnosed? Are you taking anything besides the Topamax? Barb i know driving on the road w/ epilepsy sucks. I havent blacked out in over two years but there is always the fear. ALWAYS THE FEAR. Even when the doctor has allowed me to drive i still get those damn panic attacks that may be epilepsy related or not or whatever! i dont know. thanks for the info though - i have a guilty conscience as is...i would kill myself if i did that to someone else's family. thank you for sharing your experience and i hope God or someone has been by your side to give you strength. as for me...ugh...as for an examination? i dont know...it all seems to be related to my left temporal lobe..sound, sight, smell...anxiety...what could a normal physician find out or do that my neuro hasn't? bigheadache. > > Hi, > > [quoted text clipped - 82 lines] > > Barb >i know driving on the road w/ epilepsy sucks. I havent blacked out in > over two years but there is always the fear. ALWAYS THE FEAR. Even > when the doctor has allowed me to drive i still get those damn panic > attacks that may be epilepsy related or not or whatever! i dont know. So why do you do it? > thanks for the info though - i have a guilty conscience as is So why do you do it? Sorry to sound hard but ... Mary "Mary Fisher" <mary.fisher@zetnet.co.uk> wrote in message news:417ec7fd$0$2653> So why do you do it? >> thanks for the info though - i have a guilty conscience as is > [quoted text clipped - 3 lines] > > Mary Amen!! Darryl. No apologies necessary. I do it because I am broke and the only way to survive is to work. work also provides medical benefits. w/o either i could not survive. my company's benefits has given me the power to see a doctor i wouldnt be able to see otherwise. > >i know driving on the road w/ epilepsy sucks. I havent blacked out in > > over two years but there is always the fear. ALWAYS THE FEAR. Even [quoted text clipped - 10 lines] > > Mary Many people with epilepsy work and don't drive - myself included and I'm broke too. It's the only way to survive?? The man I hit didn't survive...his family (who I didn't hit thank God) are finding it hard to survive. In an accident there's a chance you won't survive either. What sort of survival is most important to you? And while Mary may be polite and diplomatic about calling someone an idiot, I'm not and offer no apologies since that's the kind of idiot I used to be. Darryl. > No apologies necessary. > [quoted text clipped - 18 lines] >> >> Mary I have not blacked out in 2 years PERIOD. But my body feels like crap and I feel like crap and thats how I always feel so I always feel like I am having one which may be related to panic attacks. I am barely surviving to live and these benefits are the only ways I can get the medical needs I need. I did stop driving until my doctor cleared me for 6 months, but I there is always the fear. Even if I didn't have a full or partial seizure for years I couldn't help but be scared...its the whole pavlov's dog thing. Regardless...i guess i feel lost because i feel like im on this on my own. all my family is dead and i live by myself. i used to be homeless and worked my way up in a company from the gutter from a temp agency that finally gave me medical benefits to get the MRIs and EEGs i needed on a 30K salary living in Los Angeles. I'm not trying to make a sob story here...just venting...but i guess seeing another doctor would be a good move...and Darryl...i will definately mention my symptoms to my doctor the next time i see him...if he ever stops cancelling on me. Thanks for listening people. Cheers BigHeadAche > Many people with epilepsy work and don't drive - myself included and I'm > broke too. [quoted text clipped - 29 lines] > >> > >> Mary Howdy! How can you know for a fact that you haven't "blacked out"? When I "black out" (complex partial seizure) the only way I ever find out about it is if somebody else witnesses it or if I hurt myself during the episode! The only thing that you can state as an absolute fact is that you are not AWARE of blacking out! SignatureDave ???? http://www.howdydave.com > I have not blacked out in 2 years PERIOD. But my body feels like crap > and I feel like crap and thats how I always feel so I always feel like [quoted text clipped - 55 lines] > > >> > > >> Mary Thanks BigHeadAche (do you actually have a name? We're generally on first name basis in this group) I appreciate that you're doing the right thing in telling your neuro about the symptoms. He will let you know whether it's safe (or legal) for you to be driving. Be aware too that stress lowers seizure threshold and just worrying that you'll have one (as you've mentioned) can bring one on. Complex partials don't necessarily always mean blacking out though. I have complex partials every day and I don't black out, although I am *occasionally* unaware of what is going on around me for a short period, guess you could call that blacking out. Often they are minor seizures where just my eyes are affected.....they look in different directions. That was all it took for me to run my car off the road and I was fully aware the whole time, though I could not see properly. I was aware however of the mans head coming through the windscreen right in front of my face, didn't see him go flying through the air and land on a side road though. Wasn't aware of what stopped my car.....turned out it was a very solid power pole. I must have blacked out briefly after that, because the next thing I was aware of was the man being loaded into an ambulance and driven away while someone was trying to get my car door open to get me out. Want to know something funny? Once I was out of the car nobody was interested in me and all just left me alone, so I wandered into a gas station with my face and hands covered in blood and asked to use their phone to call my wife. The dumbass girl behind the counter wanted to make sure it was a local call before she would allow me to use the phone. Felt like saying "No I'm going to call my grandmother in Guatemala to wish her a happy birthday". Be careful my friend. Darryl. >I have not blacked out in 2 years PERIOD. But my body feels like crap > and I feel like crap and thats how I always feel so I always feel like [quoted text clipped - 59 lines] >> >> >> >> Mary This might be very hard for you to share with us Darryl...it is one of those lessons we should all be aware off. Especially for me when I get my drivers license back in February 2005. The question I need to ask myself is: "Is it really save to start driving again"? SignatureThanks. Marco The Netherlands > >i know driving on the road w/ epilepsy sucks. I havent blacked out in > > over two years but there is always the fear. ALWAYS THE FEAR. Even > > when the doctor has allowed me to drive i still get those damn panic > > attacks that may be epilepsy related or not or whatever! i dont know. > > So why do you do it? Exactly. Why do you drive with all these symptoms? That is for sure not very safe. You need to speak to your doctor to get an update on all this. Is your passenger aware that you are having all these symptoms while he/she sits next to you? I do not want to upset you as Mary did not want to sound hard though but... SignatureThanks. Marco The Netherlands > i know driving on the road w/ epilepsy sucks. I havent blacked out in > over two years but there is always the fear. ALWAYS THE FEAR. Even [quoted text clipped - 10 lines] > smell...anxiety...what could a normal physician find out or do that my > neuro hasn't? 1. Sometimes minor minor or major problems going on in the body can lower the seizure threshold (it has happened to me). 2. A person can have more than one medical problem at a time. Since symptoms of one problem can mimic another medical problem, it helps to figure out what belongs to what. For example, you can't always assume that all dizziness is only being caused by epilepsy because there might be something else causing it. 3. It's a good idea to obtain baseline studies when you are relatively healthy. For example, one of my liver enzymes is chronically elevated. They can't tell if it's just a normal variation or caused by something else. If baseline studies had been done while I was young, maybe they could figure out if it is normal or not at this point in my life. You can ask for photocopies of test results and file them at home. 4. Neurologists specialize in neurology and that's basically just about all they're going to look at. I've never had a neurologist run the same types of tests or even perform a complete physical examination the way the doctors in general internal medicine do. 5. Some of your symptoms seem kind of intense and too quick to come on. I have photosensitivity to visual stimuli and only in one environment (the glitzy mall we used to visit) do I have kind of fast reactions. If all those symptoms are indeed coming from the seizures, which they can, boy, your neurologist needs to try something else because if these symptoms are due to the seizures, they aren't under very good control in my opinion. Is topomax the only med they've tried for you? Is your doctor in an epilepsy center? Remember, you have the right to change doctors if you aren't satisfied with your current doctor. Barb > bigheadache. > [quoted text clipped - 84 lines] > > > > Barb Hi BigHeadAche I've had exactly the same systems you described in your first paragraph. If you ever find out what it is, would you please let me know? Good luck with all the other stuff Thanks Elbie > Hi, > [quoted text clipped - 71 lines] > > bigheadache.
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