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Medical Forum / Diseases and Disorders / Epilepsy / May 2004Please Help. Had first seizure 2 years ago, looking for some help/advice.
Hello all. I am posting to this newsgroup because after much deliberation and consideration,I fear that the things happening to me lately can no longer be ignored and that I may have indeed developed epilepsy. This is probably going to be long as I wish to include as much information as possible for those who may be willing to help. Either way, thank you for reading, and thank you more if you choose to respond. I'm feeling more lonely in my life then I ever have and don't know who else I could turn to, but the Internet. Let me tell you a little bit about myself. I am a 26 year old man. No history of epilepsy in my family. No real history of major disease, with one exception. My father was diabetic and passed away in his mid-fifties primarily because he did not take care of himself as best he should have. That was a number of years ago. My first "incident" happened about two years ago, in August of 2002. About four months prior I had undergone some extremely stressful personal issues, and in August I found out I was going to have to rush to leave the apartment I was currently in. One night while I was asleep I bite my tongue and dislocated my arm during the night. I didn't realize it then, but in retrospect I think it was my first seizure that caused it. All I remember is waking in the middle of the night and being in EXTREME pain with my arm limp at my side, and having bit my tongue. Blood was all over my pillow. Later, I remember thinking that I hadn't eaten all day and I must have bit my tongue in my sleep because I was hungry, which caused me to flail about in such a way that popped out my arm. The next incident happened about five months later on New Year's Eve. I was in my family's home, I had been drinking a little and was depressed about being home alone. I also think that I hadn't eaten much that day. On New Year's Eve night in to New Year's day, the same thing happened again. Bit tongue. Dislocated shoulder. The extreme pain. My hypothesis, same as before. I must have been hungry, maybe this time a little drunk & depressed, and bit my tongue again. Then I went for about six months without anything else and I thought that maybe I those two incidents were flukes. In June '03 it happened again. This time I feel asleep on a train coming home, and all I really remember is seeing a flashing white light, and biting my tongue. I didn't pop out my arm though this time, or at all since the first two times. I kind of think that my body has been getting acustomed to this happening. From June '03 until last week, it happened three more times. Just the tongue & flashing lights. No dislocations, and I have never excreted waste once during all the times that this has happened. I've tried to deny deny deny something in wrong, but something happened again this past Saturday, and I can't deny it anymore. I was in my apartment and I feel asleep on my couch at about 11PM. I don't really remember what happened, but I remember the lights again. This intense flashing white light. I thought I was dying. I thought this is what death is like and that I am dying here and now. The next memory I have was waking up in my bed at 3AM. Didn't bite my tongue this time, but I somehow, and I have no idea how, got an abrasion on my face and knee. (I guess I passed out and fell on the floor. I vaguely remember crawling to my bed.) I'm scared. More scared then I have ever been in my life. I'm at a loss to figure out how I could have developed epilepsy at 24. Furthermore, it only seems to happen when I don't eat, or only eat very little during the day. Being in the sun also seems to be a factor. I know the only real answer is to see a doctor. But the idea of being on medication for years and years scares me almost as much as the disease. I've always been a healthy young person. Never any chronic diseases. Never did drugs in school. Only drank a little and in moderation. Please, any thing you could share would be appreciated. Any ideas on how I can procede would be great. I'm scared it is going to get worse. I'm scared that it is going to happen during the day one day or at work. As crazy as this sounds, I feel too embarassed to tell anyone in my family or girlfriend about this. I feel terribly alone. Please post any replies to this group. Thank you. It'll be okay. The first thing you need to do is get to a doctor. There are other things beside epilepsy that cause seizures, and you need to rule those out. I had my first seizure when I was 28. My brother had his first at 50. There is no written-in-stone age for onset. There has been, and continues to be so many advances in medications. The horror side-effects of the past are on their way out. You have to make the choice to not let it beat you. You will be able to deal with this. I'm sorry. Oh, and generally we are an extremely tame group. Don't judge us on the last few days. :) Except Mary and Dave, they're always like this. :) Thanks for the quick response. For whatever it's worth, I appreciate it. >Oh, and generally we are an extremely tame group. Don't judge us on the last >few days. :) > >Except Mary and Dave, they're always like this. :) > Oh, and generally we are an extremely tame group. Don't judge us on the last > few days. :) > > Except Mary and Dave, they're always like this. :) Not when we're trying to comfort or advise ... :-) I'm glad you found this group, do get medical advice. You don't give your name so we can't be really friendly but it would help if you said where in the world you are. No need for a street name, just a country. Mary > Hello all. I am posting to this newsgroup because after much > deliberation and consideration,I fear that the things happening to me [quoted text clipped - 6 lines] > etc. > Please post any replies to this group. Thank you. I just did a post about 12 hours before the Timestamp on your post. It's under a message thread titled "Wrong Medicine?" Within that I list about 5 Newsgroups with a short book report on each. You might want to look first at the Idaho Website (the First of 2 "First Aid for seizures" sites), and see which seizure type looks similar to what you experienced. Some types of szrs. we're 'away' and unconscious of what we do during a seizure. The Simple Partial types we just feel disoriented but are usually somewhat aware of where we are or what we're doing. You should probably get a Checkup with a Doctor and they'll likely refer you on to a Neurologist. If they do an EEG many types of szrs. can be identified during that test. You might be an 'easier case' for that type of test. (Some people have more difficult to diagnose types of szrs.) If they don't find anything, they might at least be able to tell you if it was Transient or not. If they get your Symptoms (take the Printout of your earlier post), they might want to prescribe something right away. Many of the szr. types they might just give you Dilantin first, since it's one of the Oldest, so Cheapest pills, and many szr. types that are mild can be treated with it. Has anyone else ever seen you 'phase out' while they're talking to you, or in mid-conversation? (Those are petit mal or absence szrs. and although you might only be 'away' a short time, that's a signal you shouldn't be operating any Dangerous Machinery -- including Cars, Power saws, etc. until you're diagnosed and controlled.) If you're mostly having them while asleep, that might also be easy to treat since our guards tend to be Down more while we're asleep. I can give you more information on a safety type 'mouthguard' you can make that will protect your tongue and teeth from further damage if you're still having those. There's another version a Dentist can make for you if you have a Dental Plan or your Neuro (when you get one) thinks you should get one made. The name of the Dental One is an 'Occlusal Splint', and a Dentist can give you a quote for what it would cost to get one fitted. If you're having Nocturnal szrs. it might be worth at least using the Cheap version (above) or the Dental version if you get diagnosed as having Real Seizures. They're Cheaper than a New Bridgework treatment or even the Pain you can get from Grinding in your sleep before you're controlled. But w.o. being a Doctor, the chances are high that they can treat your type fairly quickly. It's Important though to get a Diagnosis, to make sure that's what you Really have. There's no point taking Anti-Seizure pills if you had e.g. Sleep Apnea or some other Sleep condition that might need a different treatment. Did ALL your szrs. (call them that for now) *Happen while you were Asleep? That's why I wondered if it could be other things too and where I'd hang up my Amateur Cape and send you to a Doctor. The more symptoms you can write down (including any witness accounts if you've had them other times), the easier the Doctor can help with a diagnosis, and see if it's something else, or epilepsy. Some of the Greatest Artists and Musicians (some modern ones) have had seizures at various times. It's not that big a deal once you get diagnosed and they find a prescription or other treatment that will work for you. G./ *snip* > From June '03 until last week, it happened three more times. Just the > tongue & flashing lights. No dislocations, and I have never excreted > waste once during all the times that this has happened. Excreting waste isn't necessarily something that will happen when someone has a seizure. I've been having them for 30 years now and never have wet or soiled myself. I do however, feel the need to go after the seizure has finished.....I guess having the seizure tightens the bladder as muscles contract or something - I don't really know the mechanics of it. However, as I said, I've had epilepsy for 30 years. I have 5 to 15 seizures every day....that amounts to over 100,000 seizures. I live a very happy and full life despite this, and you can too. I'm not saying you DO have epilepsy, you need to wait and see what the doc says, I'm just saying that seizures can be lived with. It isn't something to be feared. You'll be okay. *snip* > Furthermore, it only seems to happen when I don't eat, or only eat > very little during the day. Being in the sun also seems to be a > factor. I know the only real answer is to see a doctor. YES!! You are quite right. The only answer is to see a doctor - a neurologist, who understands these things. As far as it happening when you don't eat enough.....that makes sense to me. Low blood sugar is one thing that triggers seizures in some people with a seizure disorder. Being in the sun....I'm unsure on that one. Maybe flickering shadows as you pass trees, poles, etc? Here's a few things which I find trigger my seizures to happen. You might find it useful to take note of some or all of them to be aware of what may potentially cause them in yourself, and then form a list of your own as you realise what things affect you and what to watch out for and avoid: 1. Stress. Major contributor to triggering seizures. 2. Stress. Another bad trigger. 3. Stress. Just as bad as number 2. 4. Lack of sleep. Just about as bad as stress. 5. Low blood sugar.....not eating enough, or not healthy food. 6. Alcahol. 7. Change in routine.....staying at somebody's place, having somebody stay at your place, etc. 8. Flickering lights. Flourescent lights are bad for this. 9. When your 7 year old son hits you on the knee-cap with a baseball bat. (Watch out for that one). There are a lot more which others could add to this list, but I can't think of them right now. Stay on here and keep us informed. We'll all help wherever we can. Best of luck to you. Darryl. -- ------------------------------------------- To email, change daryl to darryl in address. ------------------------------------------- I'd add antidepressants to the list. That's what triggered my big-n-nasty. As for alcohol, just for interest's sake, my neurologist told me that getting drunk actually raises your seizure threshold, it's the sobering up that lowers it. Has anyone else ever heard this? > I'd add antidepressants to the list. That's what triggered my big-n-nasty. > > As for alcohol, just for interest's sake, my neurologist told me that > getting drunk actually raises your seizure threshold, it's the sobering up > that lowers it. Has anyone else ever heard this? Actually, now that you mention it, I've never had a seizure while drinking heavily (I don't follow my own advice - still drink a lot at times), but the following morning....look out, I'm all over the place with seizures going full throttle. -- ------------------------------------------- To email, change daryl to darryl in address. ------------------------------------------- I've never been a "heavy" drinker, but I do very much enjoy one now and again. The Topamax, though, takes away any desire for any sort of drink whatsoever. Makes it seem like creamed spinach. > I've never been a "heavy" drinker, but I do very much enjoy one now and > again. The Topamax, though, takes away any desire for any sort of drink > whatsoever. Makes it seem like creamed spinach. That's a pity if you don't like creamed spinach - I do but it's well known that I have some strange tastes. My seizures were unusual in that they were caused by pressure caused by a tumour, which was removed eleven years ago - to the day! Hurrah :-) But I still have brief deja episodes about every month and I keep a record of my environment. To date they've never been linked with alcohol. I drink about half a bottle of wine with dinner every evening, sometimes more - today we'll also have champagne for a son's birthday as well as my anniversary. And I don't suffer from stress. And I don't take any medication - except for night cramps and joint pain. I don't know what all that means because of my (fairly) uncommon epilepsy history. Perhaps it's the exception which proves the rule ... I do believe that most people with epilepsy are different from others, which is why it's not straightforward to find a universal treatment. There's not one which suits everyone. That also means that it's important to be referred to an approprite neurologist as soon as possible. Mary *Snip* > My seizures were unusual in that they were caused by pressure caused by a > tumour, which was removed eleven years ago - to the day! Hurrah :-) [quoted text clipped - 5 lines] > anniversary. And I don't suffer from stress. And I don't take any > medication - except for night cramps and joint pain. *Snip* > Mary Mary, I'm not too sure what you mean by deja episodes. Is that referring to deja vu - feeling you've been in a situation before? Is this something which is associated with epilepsy/neurological disorders? I just thought everyone got it. I often have slight deja vu, but not enough to cause any problems or confusion. I find it fascinating. I had deja vu so strong on one occasion, that I told my wife what someone was about to say, then I told her what the other person was going to reply..........and I was right. Totally freaked myself and my wife. But I've always believed that the human brain has sooo much un-tapped potential, that we are just not aware of what we could do if we used 100% of our brain's capabilities. Tootlepip. Darryl. > *Snip* > > My seizures were unusual in that they were caused by pressure caused by a [quoted text clipped - 14 lines] > is associated with epilepsy/neurological disorders? I just thought everyone > got it. It's different from the ones I used to have pre-epilepsy and it's not just the seen-before experience, there are associated other feelings. There's a name for the condition but I can't remember it. Someone will say. > I often have slight deja vu, but not enough to cause any problems or > confusion. I find it fascinating. It doesn't cause me confusion but the associated feelings can be unpleasant. It's so brief though - seconds - that it's not important and I'm fully conscious all through, continue to hold a conversation or whatever I'm doing. It's never been the precursor of a more serious seizure. > I had deja vu so strong on one occasion, that I told my wife what someone > was about to say, then I told her what the other person was going to > reply..........and I was right. Totally freaked myself and my wife. But I've > always believed that the human brain has sooo much un-tapped potential, that > we are just not aware of what we could do if we used 100% of our brain's > capabilities. What I described isn't the same thing at all :-) I often find that people have said what I expected them to say, it doesn't freak me or anyone else. I think most people do that sometimes. Mary > Tootlepip. > Darryl. > > *Snip* > > > But I still have brief deja episodes about every month and I keep a record > > > of my environment. To date they've never been linked with alcohol. I drink > > > about half a bottle of wine with dinner every evening, sometimes more - > > > today we'll also have champagne for a son's birthday as well as my [quoted text clipped - 4 lines] > > > > Mary, I'm not too sure what you mean by deja episodes. Is that referring to > > deja vu - feeling you've been in a situation before? Is this something which > > is associated with epilepsy/neurological disorders? I just thought > everyone [quoted text clipped - 11 lines] > conscious all through, continue to hold a conversation or whatever I'm > doing. It's never been the precursor of a more serious seizure. *** G** I think there might be some electrical or chemical things happening during some of them (mine at least). I had a sense of being Aware it was happening, but also of extreme Discomfort. Eight years ago, it was Fear since any time I had the Deja Vu (Simple Partial) it was a precursor of a Full Drop Down Complex Partial seizure when it Generalized to the rest of my brain, and when I had that Deja Vu I had only 60-180 seconds to find somewhere Cool to lie down, or something Cool to drink to try get the feeling to pass. (Also in some of the cases I'd start doing the uncontrolled activities that were potentially dangerous rather than just Drop down Unconscious. Those included walking into traffic, or boarding a bus I didn't need, etc. and some of the episodes lasted from 5 to 15 minutes. Those latter ones I was completely 'away' wrt. conscious behaviours or what I was doing. That's where the First Aid Chart lists to talk to the person quietly since they won't remember where there are or what they did while they were 'away'. During the early ones, if I became unconscious, the first 3-5 I woke up in Hospital. Later I'd wake up before someone had decided to call an Ambulance (in case I was having a Heart attack etc.) . Because my seizures started in the Right Temporal Lobe (described under efa.org? and other sites), the Aura that precedes onset of the seizure can include a Taste or Odour that's Sour but not really there --> so part of the discomfort *I* had was a Lemon taste at the back of the tongue or Lemon Odour like in some cleaners, even if I was somewhere where I *knew it couldn't be a cleaner nearby producing the feeling. /G. > > I had deja vu so strong on one occasion, that I told my wife what someone > > was about to say, then I told her what the other person was going to > > reply..........and I was right. Totally freaked myself and my wife. But I've > > always believed that the human brain has sooo much un-tapped potential, that > > we are just not aware of what we could do if we used 100% of our brain's > > capabilities. *** G** You could buy a Lottery Ticket to test that, if they have those (pick 6 or 7 of 31 numbers before a draw) where you live. I believe the *Sensation does not match the *Reality, and it'll cost you 3 dollars (or what they charge where you are), to support a Charity, but you won't take home the million dollars. The FEELING, though, is Incredibly VIVID for anyone who hasn't experienced it. I can only imagine how upsetting the Jamais Vu (never seen) feeling must be for people who have their seizures start in the Left Temporal Lobe, when their own place might feel like they're in a stranger's house, and don't know how they got there... /G. > What I described isn't the same thing at all :-) > [quoted text clipped - 4 lines] > > Tootlepip. > > Darryl. "gaross" <gaross@rogers.com> wrote in message news:%f3rc.78578 > > > I had deja vu so strong on one occasion, that I told my wife what > someone [quoted text clipped - 5 lines] > > > we are just not aware of what we could do if we used 100% of our brain's > > > capabilities. > *** G** You could buy a Lottery Ticket to test that, if they have those > (pick 6 or 7 of 31 numbers before a draw) where you live. > I believe the *Sensation does not match the *Reality, and it'll cost > you 3 dollars (or what they charge where you are), to support a Charity, but > you won't take home the million dollars. The FEELING, though, is Incredibly > VIVID for anyone who hasn't experienced it. Well it would seem that on *That occasion the *Sensation did match the *Reality. And as Mary pointed out, I am not the only one to whom that has occured. > "gaross" <gaross@rogers.com> wrote in message news:%f3rc.78578 > [quoted text clipped - 23 lines] > *Reality. > And as Mary pointed out, I am not the only one to whom that has occured. I didn't say that it was invariably right though :-) Mary > > "gaross" <gaross@rogers.com> wrote in message news:%f3rc.78578 > > [quoted text clipped - 28 lines] > > Mary That's right. And neither did I. :-) Simply that it happened once to me and on that occasion it was 100%. Every other time it's happened has merely been a feeling of "this has happened before" but not being able to pin-point when. It's a strange feeling. > "gaross" <> wrote in message news:%f3rc.78578 > > > > > I had deja vu so strong on one occasion, that I told my wife what > > someone > > > > was about to say, then I told her what the other person was going to > > > > reply..........and I was right. Totally freaked myself and my wife. But I've > > > > always believed that the human brain has sooo much un-tapped potential, that > > > > we are just not aware of what we could do if we used 100% of our brain's capabilities. > > *** G** You could buy a Lottery Ticket to test that, if they have those > > (pick 6 or 7 of 31 numbers before a draw) where you live. > > I believe the *Sensation does not match the *Reality, and it'll cost > > you 3 dollars (or what they charge where you are), to support a Charity, but > > you won't take home the million dollars. The FEELING, though, is Incredibly > > VIVID for anyone who hasn't experienced it. > > Well it would seem that on *That occasion the *Sensation did match the > *Reality. > And as Mary pointed out, I am not the only one to whom that has occured. If you have a Google link, do a search on Right Temporal Lobe Seizures and check the sensations or aura, or I can look up (later) the efa.org link that describes the various auras of the 5? seizure types. Another search option you could try is either Aura or Deja Vu. You could add Jamais Vu (never seen) on a search and see if any (many) pull up Left Temporal Lobe posts. Discard any of My posts it pulls up. (I've had mail from 2-3 people who wanted me to pick lottery numbers for them and split the winnings! They weren't 'here', but just did a Google Search on 'deja vu' and My address came up (from posts with titles that included that in the Subject or Content when we were discussing this 2-3 years ago). As Mary's subsequent post suggests, (for me) it was a sensation? but didn't match what really happened next. And as I indicated it's an Incredibly Real feeling. I can't speak to experiences you have had where the Deja feeling you had turned out to match what really happened later. In my case, it was a 'non-descript feeling' that I'd *know what was about to happen Later, but when my seizure had passed, I didn't recall what I had 'foreseen' but only the feeling. As a 'non-invasive' test, those 2 sensations (deja vu and jamais vu) are often used to identify a Probable source of whether the Seizure Focus is starting in the Right or Left Temporal lobe. Those are the short-term Memory Buffers, and also part of where we store 'who we are' in. That's why a sensation there can be incredibly Real (feeling), but (above) Doctors can also use that, before EEGs or MRIs, to posit that the seizure might start in one of those Lobes. There are specific medications that target electrical firing in either of those, and treatments can be started even if further tests haven't yet confirmed that those are the only locations where electrical 'sparks' are happening. Any medications prescribed for that only dampens the effect, so later tests can still be done to confirm if that's where any activity is occurring without the medications masking the firing that would show up on an EEG or MRI. G./ > > "gaross" <> wrote in message news:%f3rc.78578 > > [quoted text clipped - 55 lines] > without the medications masking the firing that would show up on an EEG or > MRI. G./ For goodness sake Gordon, I was talking about a specific instance where what I sensed was going to happen, did in fact happen - exactly as I sensed it (as described above). I wasn't talking about deja vu or jamais vu as pertaining to epileptics, just an instance of deja vu - or premonition if you prefer - which surprisingly turned out to be accurate. LOL at the people who mail you wanting you to pick lottery numbers for them. You should agree to do it for a $50 non-refundable fee and see if they're still keen. Could be onto a great way to make some money.....might even pick some winning numbers and make a fortune by accident. :-) > As a 'non-invasive' test, those 2 sensations (deja vu and jamais vu) are > often used to identify a Probable source of whether the Seizure Focus is > starting in the Right or Left Temporal lobe. Mine's likely to be right simply because that's where my tumour was and where the surgery was. If it's the only relic of that time I'm happy. Very happy. Mary > "gaross" <> wrote in message > > As a 'non-invasive' test, those 2 sensations (deja vu and jamais vu) are > > often used to identify a Probable source of whether the Seizure Focus is > > starting in the Right or Left Temporal lobe. [quoted text clipped - 4 lines] > Very happy. > Mary That sounds like a good Idea to me !! As mine got progressively less intense (but still there), I knew we were getting closer to control (finally after ~4 years on various pills), and that felt positive and a sign that things were getting better. (That's what I tried to express earlier, on this thread, or another.) We often only have ourselves as a Benchmark of if this is getting Better and more controlled, staying the same, or getting worse. It's difficult to compare each of us with each other, except on 'gross scales' wrt. a seizure type, a medication we might have in common (with any reactions), of if we feel we're having a setback from a level we've achieved. I think it's worthwhile to compare (as we've been doing last few days), how our own personal experiences have been with a particular szr. type, or a medication or treatment we've found, and which have worked or not. G. > It's difficult to > compare each of us with each other, except on 'gross scales' wrt. a seizure > type, a medication we might have in common (with any reactions), of if we > feel we're having a setback from a level we've achieved. I couldn't agree more. It seems to me that there's no standard for any kind of epilepsy. > I think it's worthwhile to compare (as we've been doing last few days), > how our own personal experiences have been with a particular szr. type, or a > medication or treatment we've found, and which have worked or not. G. Yes - but still not to assume that what's right for one is necessarily right for another. Mary > My seizures were unusual in that they were caused by pressure caused by a > tumour, which was removed eleven years ago - to the day! Hurrah :-) Happy anniversary Mary! I'm coming up on five years since my tumor was removed. Liz > > My seizures were unusual in that they were caused by pressure caused by a > > tumour, which was removed eleven years ago - to the day! Hurrah :-) > > Happy anniversary Mary! > I'm coming up on five years since my tumor was removed. Thank you. I drank too much :-( The only problem with that is that I can't function happily next day for a few hours, no matter how much water I drink. But at least I didn't lose control, I stop before then. Happy anniversary in advance and I hope that your surgery was as dramatically successful as mine was! Mary > Liz > > I'd add antidepressants to the list. That's what triggered my big-n-nasty. > > [quoted text clipped - 10 lines] > To email, change daryl to darryl in address. > ------------------------------------------- Several of the anti-ep medications suffer reduced effect or can be compromised by alcohol. Some over the counter cold medications can have the same effect. Dilantin and Tegretol are two that are listed with above, possibly Clobazam (Frisium) as well. I don't know why a Neurologist wouldn't know that. /G. > Several of the anti-ep medications suffer reduced effect or can be > compromised by alcohol. Some over the counter cold medications can > have the same effect. Dilantin and Tegretol are two that are > listed with above, possibly Clobazam (Frisium) as well. I don't > know why a Neurologist wouldn't know that. /G. That is right. Social drinking of two consumptions of alcohol may not cause a higher number of seizures. A combination of alcohol and medicins can cause that the effect of alcohol is higher then without these medicins. Regular use of these medicins and you can ignore that effect again.  SignatureThanks for responding. Bye, Marco > > Several of the anti-ep medications suffer reduced effect or can be > > compromised by alcohol. Some over the counter cold medications can [quoted text clipped - 14 lines] > Bye, > Marco I find that to be true. When drinking, it takes me far less alcohol to become drunk than others around me. Usually a large person like me (6'3" and 100kg) would take a lot of alcohol to become drunk, but that isn't the case with me because of my medications. >> I'd add antidepressants to the list. That's what triggered my >> big-n-nasty. [quoted text clipped - 7 lines] > times), but the following morning....look out, I'm all over the place > with seizures going full throttle. I have to admit that the neurologist is right or maybe right about that (but on the contrary: I got the grand mall "only" once and only "the next" day after drinking heavily + lack of sleep + stress). In my case it was a combination of triggers that caused it but I had these triggers before and never had a seizure. Best to all of you and for the initial poster of this thread: go to the doctor. It is the only thing you can do -actually, you should have done that already. My doctor immediately sent me to a neurologist after I told him I suffered from a seizure, I am now on treatment and feel better indeed which is great. SignatureThanks for responding. Bye, Marco > >> I'd add antidepressants to the list. That's what triggered my > >> big-n-nasty. [quoted text clipped - 13 lines] > combination of triggers that caused it but I had these triggers before and > never had a seizure. Usually heavy drinking is accompanied by a late night - lack of sleep. So it's hard to say whether it's the alcohol or the lack of sleep which causes seizures to occur. I think maybe it's the combination. Alcohol lowering seizure threshold and lack of sleep added to it. > *snip* > > From June '03 until last week, it happened three more times. Just the [quoted text clipped - 48 lines] > Best of luck to you. > Darryl. I forgot to mention, getting a high temperature - fever - is very nasty. It almost killed me when I was 8yrs old. (But that's just my story - doesn't mean it will happen to everyone) Tends to make the seizures come thick and fast. Also caffeine can be a trigger. Not only in coffee, but in coke, chocolate, energy drinks. I stopped having all of these several years ago and the number of seizures I had per day halved. Slipped back into the habit of having them and guess what? The seizures went back up again. Life goes on. Oh, by the way....good news. I haven't had a seizure for three and a half days!! My new combination of meds, despite the side effects, seems to be starting to work. Darryl. > Oh, by the way....good news. I haven't had a seizure for three and a half > days!! My new combination of meds, despite the side effects, seems to be > starting to work. Oh excellent! Is it worth it? Of course it is :-) Mary > Darryl. > > Oh, by the way....good news. I haven't had a seizure for three and a half > > days!! My new combination of meds, despite the side effects, seems to be [quoted text clipped - 8 lines] > Mary > > Darryl. Mary, It's unbelievable getting to the end of the day and realising I haven't had a seizure all day. And then the same again the following day. It's a small step, but it feels so good. So far I haven't had any today either. Day four. Still, it is only 8:40 AM. The side effects of all the different meds I'm taking are not unbearable....certainly better than having seizures all over the place. I'm just hoping that after 30 years I'm finally starting to make some progress. Guess it's a bit early to say yet. :) :) :) :) Darryl. > > > Oh, by the way....good news. I haven't had a seizure for three and a > half [quoted text clipped - 20 lines] > > :) :) :) :) Excellent! Look, Darryl, I have breast cancer. I'm actually a six year survivor and not on any medication now but I know what the future MIGHT bring and that there's no such thing as a cure for bc. I had some side effects of medication for bc - but what's the alternative? And what's the alternative for you? Not worth considering, is it? Any progress is progress, even if there are some steps back. They're still better than the alternative :-)))) Keep at it. Keep living. Life is sweet, make the most of it. It's not a rehearsal, it's the Real Thing. Hugs, Mary "Daz_n_Pat" <daryl.gaye@paradise.net.nz> wrote in message n ews:YcPqc.3047$FN.324119@news02.tsnz.net... [...] > Oh, by the way....good news. I haven't had a seizure for three and a half > days!! My new combination of meds, despite the side effects, seems to be > starting to work. > Darryl. NEAT!!! Good luck with having even longer periods! --DR Congratulations Darryl! :) > Oh, by the way....good news. I haven't had a seizure for three and a half > days!! My new combination of meds, despite the side effects, seems to be > starting to work. > > Darryl. Yeah, well done. It feels Good doesn't it? Don't get too 'cockie', but you can Celebrate anyway!! G./ > Congratulations Darryl! :) > [quoted text clipped - 3 lines] > > > > Darryl. > Yeah, well done. It feels Good doesn't it? Don't get too 'cockie', but > you can Celebrate anyway!! G./ I can celebrate? Cool!! Think I might go out and buy lots of alcohol and stay up all night getting sloshed and looking at strobe lights. Then I might hit myself on the head a few times with a bat, then stand in front of an audience of a few thousand people and try to sing the national anthem. No stress, no worries.....lol. I can beat this at last, I'm pretty sure. Just slloowwllyy juggling meds to get the right combination. Thirty years is all it's taken so far. > > Yeah, well done. It feels Good doesn't it? Don't get too 'cockie', > but [quoted text clipped - 7 lines] > I can beat this at last, I'm pretty sure. Just slloowwllyy juggling meds > to get the right combination. Thirty years is all it's taken so far. That's dedication! Persistence pays though, it seems :-) Mary > > > Yeah, well done. It feels Good doesn't it? Don't get too 'cockie', > > but [quoted text clipped - 13 lines] > > Mary Yeah. For 30 years I've just been Persisted off, but we're getting there. It's now 11:30pm and had NO seizures again today!! That's ummmm, oh...lost track. Four days I think. Been a while since I've gone that long. > > > I can beat this at last, I'm pretty sure. Just slloowwllyy juggling > > meds [quoted text clipped - 7 lines] > It's now 11:30pm and had NO seizures again today!! That's ummmm, oh...lost > track. Four days I think. Been a while since I've gone that long. Don't tempt providence though ... perhaps you should stop bragging for a bit :-) Mary > > > > I can beat this at last, I'm pretty sure. Just slloowwllyy > juggling [quoted text clipped - 13 lines] > > Mary Darn it, you're right. Just had a very small one about ten minutes ago. Mind you, it's 2:30am and I haven't been to bed yet - getting a little tired. Now I have to start counting all over again. > > > > > I can beat this at last, I'm pretty sure. Just slloowwllyy > > juggling [quoted text clipped - 21 lines] > > Now I have to start counting all over again. Count sheep. In bed. Goodnight :-) Mary > > > > > > I can beat this at last, I'm pretty sure. Just slloowwllyy > > > juggling [quoted text clipped - 29 lines] > > Mary Okay Mum. Nighty night. ;-) You wrote this on a Post 2 days before your "Reply" below. My reply was to that message. If you expect me to remember the History of everyone here, or use my 'Deja Vu' to read that you didn't Really want a reply, you're wasting your time. (I put the ***s at end where my Deja Vu didn't tell me how long you've been trying to get a Med. Balance. How many current meds. were in use already in 1974? ) G. G. ---> You Wrote (it's still up on my reader) --> Life goes on. Oh, by the way....good news. I haven't had a seizure for three and a half days!! My new combination of meds, despite the side effects, seems to be starting to work. Darryl. //////////////////////////// "Daz_n_Pat" <> wrote in message -- > "gaross" <> wrote in message > > Yeah, well done. It feels Good doesn't it? Don't get too 'cockie', but > > you can Celebrate anyway!! G./ > [quoted text clipped - 6 lines] > to get the right combination. Thirty years is all it's taken so far. > ************************************************ Umm, Gordon, If that was addressed to me, I hardly understood a word you said. Sorry. I'm not sure what you're trying to say, but if you felt I was being sarcastic with my remarks about drinking and strobe lights, etc, I wasn't. It was an attempt at humour, actually. A joke. Sorry if you didn't read it that way. So was the remark about it taking thirty years. That was a joke at myself and no one else. As far as the meds that I was using thirty years ago....I was on dilantin (which I no longer take) and tegretol (which I've been taking the whole time and have just now cut back the dose to 1200mg). Was also on Rivotril? at some stage - not sure when. In more recent years I've added Caffeine and Nicotine, but haven't gained much benefit from these. (That was also a joke - sheesh!!) D. > You wrote this on a Post 2 days before your "Reply" below. My reply was to > that message. If you expect me to remember the History of everyone here, [quoted text clipped - 32 lines] > > to get the right combination. Thirty years is all it's taken so far. > > ************************************************ > Umm, Gordon, If that was addressed to me, I hardly understood a word you > said. I didn't understand it either :-) > Sorry. I'm not sure what you're trying to say, but if you felt I was > being sarcastic with my remarks about drinking and strobe lights, etc, I > wasn't. It was an attempt at humour, actually. A joke. I thought it was very funny. > Sorry if you didn't > read it that way. So was the remark about it taking thirty years. That was a > joke at myself and no one else. I didn't see it as anything else. > As far as the meds that I was using thirty years ago....I was on dilantin > (which I no longer take) and tegretol (which I've been taking the whole time > and have just now cut back the dose to 1200mg). Was also on Rivotril? at > some stage - not sure when. > In more recent years I've added Caffeine and Nicotine, but haven't gained > much benefit from these. (That was also a joke - sheesh!!) Don't get uptight, some people can see a joke if it jumps up and waggles its ears at them :-) Mary > D. > [quoted text clipped - 37 lines] > > > to get the right combination. Thirty years is all it's taken so far. > > > ************************************************ > > Umm, Gordon, If that was addressed to me, I hardly understood a word you > > said. [quoted text clipped - 28 lines] > > > > D. Oh Mary, will you marry me? > Oh Mary, will you marry me? Can't, sorry. Celebrated 44 years of Wifehood in March. And anyway Howdy Dave's first in the queue. Or Malcolm. Mary > > Oh Mary, will you marry me? > [quoted text clipped - 3 lines] > > Mary LOL. Well I guess my wee wifey wouldn't be too happy either. > > > Oh Mary, will you marry me? > > [quoted text clipped - 5 lines] > > > LOL. Well I guess my wee wifey wouldn't be too happy either. You have a wee wifey? You couldn't cope with me then. I'm a Big Woman! Mary Why are you not surprised???? > Hello all. I am posting to this newsgroup because after much > deliberation and consideration,I fear that the things happening to me [quoted text clipped - 56 lines] > I'm scared. More scared then I have ever been in my life. I'm at a > loss to figure out how I could have developed epilepsy at 24. I've always wondered what caused my epilepsy too. I was about 20 when I started having seizures for no apparent reason. Yeah, it's pretty scary. > Furthermore, it only seems to happen when I don't eat, or only eat > very little during the day. Being in the sun also seems to be a > factor. I know the only real answer is to see a doctor. But the idea > of being on medication for years and years scares me almost as much as > the disease. Of course you have to see a doctor because what's happening to you could be from a number of things, which might be easily fixable. It's not bad taking medications except I would rather not spend money on drugs (I'm cheap, cheap, cheap). I've always been a healthy young person. Never any > chronic diseases. Never did drugs in school. Only drank a little and > in moderation. Sometimes medical conditions/problems are present for years but just don't make their presence known unless the right trigger comes along to provoke it enough to make it obvious. Please, any thing you could share would be appreciated. > Any ideas on how I can procede would be great. You need to start with a general all purpose physician such as an internal medicine doctor or even a good family doctor. Those type of doctors will run basic tests and probably a full physical examination if you haven't had one recently and then refer you to other doctors if necessary. It can save a lot of time and money by having a primary care physician because they can probably narrow down the problem and determine which subsequent physician is the most appropriate. I'm scared it is going > to get worse. I'm scared that it is going to happen during the day one > day or at work. As crazy as this sounds, I feel too embarassed to tell > anyone in my family or girlfriend about this. I feel terribly alone. You've got to tell your family at least. You probably should talk to them before you see a doctor so they don't go into shock when you tell them what the diagnosis was. My parents (both deceased) would not have been understanding at all, but they would have gotten used to having an epileptic daughter. My kids, husband, siblings, and friends are used to it now. Handling these health issues (without embarrassment) will be easier and more comfortable as you get older. You need to take care of this before it gets out of control. Sometimes family and friends notice little things before you do but they can't put their finger on it. My daughters recognized way before I did that every time we went to a particular mall I would get very tired and have to go sit down. My husband said he noticed I acted dizzy at times, which I never noticed at all. After the epilepsy diagnosis, it all made sense to them. Barb > Please post any replies to this group. Thank you. > I'm scared it is going > > to get worse. I'm scared that it is going to happen during the day one > > day or at work. As crazy as this sounds, I feel too embarassed to tell > > anyone in my family or girlfriend about this. I feel terribly alone. I missed this bit. > You've got to tell your family at least. You probably should talk to > them before you see a doctor so they don't go into shock when you tell > them what the diagnosis was. Or in case they witness an episode. Forewarned is forearmed. > My parents (both deceased) would not have > been understanding at all, but they would have gotten used to having an > epileptic daughter. My kids, husband, siblings, and friends are used to > it now. Handling these health issues (without embarrassment) will be > easier and more comfortable as you get older. Oh! Don't wish his life away :-) But of course you're right. > You need to take care of this before it gets out of control. Sometimes > family and friends notice little things before you do but they can't put [quoted text clipped - 3 lines] > never noticed at all. After the epilepsy diagnosis, it all made sense > to them. Yes, our youngest son (36 today) said that I was doing all sorts of weird things. Actually I knew I was to - not fits but uncharacteristic things. They saw more than I knew about though. If only they'd said something before it could have been dealt with earlier ... not that I blame them. They've always known that I wasn't a normal wife and mother ... whatever they are. To the OP - please tell us our name - make one up if you like. We don't like referring to you in the third person. You're a human being and we like to see you as one. Mary Mary Welcome to the group and you've come to the right place if you are "looking for help". First as some have already commented you need to see a doctor right away. Describe your several events. The doctor will may have you see a neurologist and I assume he/she will also run other tests to rule out other causes. If in fact you do have epilepsy please don't feel that your world has come to an end. I have coped with epilepsy for over 30 years. I had my bad times when I bit my tongue, once my shoulder was dislocated when my husband was helping me (he was holding onto my arm during the seizure). We continued to learn what to do and what not to do during seizures and to stay away from triggers and environments that were a problem for me. Now that I have figured out my triggers, take my medication, and take care of myself my seizures have been under control for 9 years. It is so important that you inform your friends and family. If you do have epilepsy you can get support from your local Epilepsy Foundation (if you live here in the USA). They have video tapes you can borrow to help explain the different seizures. The more informed you and your friends and family become the better you will feel about your circumstances and before you know it you will feel like you can handle it. Take your medication and listen to your body. If you feel like today is not a good day, for example you start to come down with a flu or cold, don't push yourself. Speaking of illnesses taking over the counter cold and flu medications can actually be a problem for people with epilepsy. It can lower your seizure threshold - in other words it can push you into a seizure. My doctor told me to just rest and not worry if my nose was running. Please don't drive until you get this under control. Make an appointment with a doctor today. And I won't tell you not to be afraid, because just telling someone that doesn't help you. But I will tell you to find a compassionate friend or family member to help you get through this. Do you know how many people are coping and living successful lives who happen to have a seizure disorder? You will be all right. Take care, Julie Walton, Volunteer Webmaster Epilepsy Foundation of Idaho http://www.epilepsyidaho.org > Hello all. I am posting to this newsgroup because after much > deliberation and consideration,I fear that the things happening to me [quoted text clipped - 69 lines] > > Please post any replies to this group. Thank you. > Hello all. I am posting to this newsgroup because after much > deliberation and consideration,I fear that the things happening to me [quoted text clipped - 4 lines] > respond. I'm feeling more lonely in my life then I ever have and don't > know who else I could turn to, but the Internet. 8>< snipped but read > I'm scared that it is going to happen during the day one > day or at work. As crazy as this sounds, I feel too embarassed to tell > anyone in my family or girlfriend about this. I feel terribly alone. Yes, it is scary, for you and it will be scary for anyone who witnesses it, especially if they don't know it could happen. You have my sympathy and my understanding. As others have said, go and see your doctor and tell him/her what you've told the group. It may not be epilepsy at all, but possibly something to do with your blood sugar levels because you haven't eaten or you've not eaten enough. I know I go light-headed if I don't have enough to eat. My son (age 11) is epileptic and has been since birth. There are or were many triggers for his fits: reactions to certain foods, getting too hot, not having enough to eat, hyperventilating (deliberately incidentally!!), watching carousels or anything similar. Flashing lights, however, don't cause him to fit. He's also autistic and has had a stroke. I've been told that a consequence of both of those is epilepsy. My daughter (age 9) was diagnosed epileptic 4/5 years ago. Last year she had an EEG and they weren't sure whether the medication she was on effective enough for the reading to show no sign of fits or whether she was no longer having them. The paediatrician reduced her medication, and she's not been on it for over 6 months now. Last week she had another EEG and it's looking good. We won't officially know whether she is still epileptic or not until the end of July. We're hoping and praying that she'll be given the all clear, especially as she wants to fly Harriers and helicopters when she leaves school!! We're almost certain that the cause of her epilepsy was stress. It needn't be all hopeless and even if the official diagnosis *is* epilepsy, it can be treated very effectively. If you don't want your family or girlfriend to know now, then wait until you know for sure what is amiss, then tell them. Any girl worth her salt isn't going to dump you because of what's awry. The most important thing is to see your doctor and get yourself checked out. Good luck Welcome to the group. As everyone else has said, you must see a doctor as soon as possible! Epilepsy is not a disease of old age. I had my first seizure at age 22. I lived for more than 10 years after that with no medication, although I had to finally relent and start meds after the seizures increase a couple of years ago. (By the way, I have never lost bladder or bowel control during a seizure, and I've had at least 100.) Epilepsy is an unpredictable disease and the doctors have few answers when it comes to things like "Will I get better or worse?" "How long will I need to take meds?" "What caused me to get epilepsy?", etc. But at least they can make sure you don't have something more serious like a brain tumor, and prescribe treatment if you want it. The drugs seem to be pretty unpredictable too in terms of whether they will work for you, what side effects you will get (and how severe), etc. It's a matter of trial and error. I still have not found the right treatment, but many people have and are doing very well. Good luck! Hilary > Hello all. I am posting to this newsgroup because after much > deliberation and consideration,I fear that the things happening to me [quoted text clipped - 69 lines] > > Please post any replies to this group. Thank you. |
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