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Medical Forum / Diseases and Disorders / Epilepsy / June 2004Temporal Lobe Seizure?
Hi, Yesterday I was working away when I was struck with VERY vivid deja vu. I was emailing someone on a work issue and I could have sworn I had done it before, even went so far as to start a search for a previous email (which didn't exist). It was if I was getting deeper and deeper into the deja vu, and it got to the point where I was remembering things I had dreamed, and could not tell if they were dream or reality. It got to the point where I felt disconnected from the outside world, felt very disoriented. Odd "tightness" in the head/facial area. Called a friend, so I was able to function somewhat, but when she would ask me questions, I was at some points unable to respond. During this time I felt the urge to cry, but I am not sure where that came from. Also something weird, my nose started running toward the end of the "episode." I felt almost back to normal after about 20 minutes. Something similar occured a few years ago but I did not have it checked out. Can anyone relate to this? I am going to the Dr. today, and frankly am a bit worried about having to decribe such odd symptoms. Thanks for your time, Jennifer > Hi, > Yesterday I was working away when I was struck with VERY vivid deja [quoted text clipped - 19 lines] > Thanks for your time, > Jennifer Hello, I can't tell from experience but what I learnt so far from this support group is that you may have had an aura which may introduce a seizure (tonic-clonic / grand mal). What will happen when you meet your Dr. is that he is going to send you to a specialist (neurologist). Most likely (but that depends in what country you are located) is that you will have an EEG and/or CT-scan to start with. Try to find out if there are certain triggers which you can avoid (lack of sleep / alcohol usage the day before/stress), etc. It is indeed frustrating when you are not sure what the problem is -hopefully your Dr. can tell you more.  SignatureTake care. Bye, Marco Yes. What you've described sounds just about exactly like mine, except my nose doesn't run, I salivate horribly towards the end and have to swallow and swallow. I also tend to get nauseated. I've had one grand mal, and even with the bitten tongue and sore muscles I think I prefer it over a cluster of the partials. One thing you best look out for is that for a lot of people they do happen in clusters. Any chance you can arrange to not be alone for awhile? I know how hard it is to describe these things. Here's hoping you find a sympatico physician first time out. Coming here first was wonderful. I wish I had. If they do an EEG, epileptic activity probably won't show up unless you happen to have an seizure during the procedure. Mine feel like I'm involved in two realitiies at the same time. The real world and then there's this other whirpy one going on over here somewhere. I hate it!!!!!!! > Yes. What you've described sounds just about exactly like mine, > except my nose doesn't run, I salivate horribly towards the end and [quoted text clipped - 16 lines] > real world and then there's this other whirpy one going on over here > somewhere. I hate it!!!!!!! Yes, it is really hard to describe these kind of feelings. For me: I do not have these kind of "typical" episodes (auras). I sometimes (mostly during my lunchbreak) do not feel very "well". Strange feeling in my head, belly, stomach, weak feeling in legs, etc. I thought it may be because of drinking too much milk (milk protein/gluten protein diet and liver toxics work using Depakene as med) -I stopped eating cornflakes for breakfast and that made it better for me (the feelings went away a bit). It is hard to describe -it may also be that I am expecting this feeling to occur during my lunchbreak, so that makes me getting too anxious and that gives me the bad feelings which means no sign of epileptical activity during my lunchbreak. It is the "maybe it is this" and it is the "maybe it is that" that frustrates me a bit :-( There is no way you are certain unless you are hooked up at an EEG / CT-scan / MRI-scan device all the time. SignatureTake care. Bye, Marco Thanks for the replies. I too am in my late 20s, 28. The doctor did a blood test (won't know results in a couple days). I'm also scheduled for an EEG on Monday morning. Take care, Jennifer > Yes. What you've described sounds just about exactly like mine, except my > nose doesn't run, I salivate horribly towards the end and have to swallow [quoted text clipped - 15 lines] > world and then there's this other whirpy one going on over here somewhere. I > hate it!!!!!!! Good Luck. This is the hardest part. The rest sucks too, but getting through the diagnosis is the nasty part. > Good Luck. This is the hardest part. The rest sucks too, but getting through > the diagnosis is the nasty part. I think that's true of all serious conditions. One you have a positive there's nothing to do but enjoy the care of experts and make the most of the good times. Even the bad times are something to be experienced and not dreaded. Although when I get my 'feeling' I always think, "Oh no ... " ! I'm not being flippant. Mary How old are you Jennifer? Mine started in my late 20's. > How old are you Jennifer? Mine started in my late 20's. I had a deja vu once. But only the one. I regularly get small ones, like "I'm sure this has happened before". But the main one I had was during a conversation I was listening to and all of a sudden I knew what one of the people was going to say. I told someone and then told them what the other person was going to reply, and I was right. Freaked me out a bit. But there was no other feelings, nausea, etc. Just the knowledge of what was going to happen because to me it was as if it had already happened before. Don't know if this was related to the epilepsy or what, but it came as a bit of a surprise. BTW, I was about 33 at the time. Darryl. > > How old are you Jennifer? Mine started in my late 20's. > > [quoted text clipped - 10 lines] > > Darryl. It may apply to other seizure types too, but an Aura of a Deja Vu, with a Complex Partial (like mine), usually indicates the Seizure Focus (start point) is in the Right Temporal Lobe. Jamais Vu sensation can be an Aura that started in the Left Temporal Lobe. I was never able to pick Lottery numbers with mine-- they were a feeling, then Splashed outward (sort of like a wave off a rock), and would pass with a mild to medium dizzy sensation or feeling of discomfort. That was when I could tell that my original (drop down) seizures were becoming more controlled, than when first diagnosed. G./ > Hi. This is one of the best descriptions I've read of my auras. For me, the auras are a disconnected, outer-worldly, ear-ringing, nerve-humming, long-lasting wave fog of confusion. Then, the seizure might or might not take place. Isn't life grand! :-) Suzanne <skip> > I was never able to pick Lottery numbers with mine-- they were a feeling, then Splashed outward (sort of like a wave off a rock), and would pass with a mild to medium dizzy sensation or feeling of discomfort. That was when I could tell that my original (drop down) seizures were becoming more controlled, than when first diagnosed. G./ Some of mine, as I got close to control, I'd get that 'Brain Fog' or 'Stuffy Ear' feeling (below) for periods of an Hour up to 10-12. Some seemed to be related to Low Air pressure (storm or rain moving in), Most had no apparent reason at all. If you do any searches and can't find a lot on auras, take a look too at Simple Partial Seizures, since Doctors often combine what we call auras among that topic. (That's what I referred to earlier (below) as I got closer to control of Complex Partial seizures, I knew if the Simple Partial happened then passed without generalizing on to a C.P. that I was getting closer to full control.) *If you get any feelings of either Deja Vu (I've done this before, been here before, said this before), or Jamais Vu (where your own place or neighbourhood might look like you're in a Stranger's home), those could be symptoms of Right (Deja) or Left (Jamais) Temporal Lobe-based seizures. *If some of your's are like that the Older name used to be Temporal Lobe Epilepsy or Seizures -- and many search sites still have information sorted under that title. More recently (last 10+ years) the Medics have grouped TLE within Complex Partial Seizures -- so if you ever are losing consciousness, or the szr. is stronger than just 'the aura' (above and below), you might find topics of interest under Complex Partial Seizures at the Ep. Foundation of America site or Julie's Idaho site. (Google can be used to search on either of those names as well.) G./ > > Hi. > This is one of the best descriptions I've read of my auras. For me, the [quoted text clipped - 9 lines] > was when I could tell that my original (drop down) seizures were becoming > more controlled, than when first diagnosed. G./ I have similar sensations. Deja vu was how I originally described it to my doctor. Now I call it a dream state, at least some of them feel that way - the doctors seem to react to that phrase better. Upset stomach and bowel movement is typical of mine. I get a tingling down my right arm for the stronger ones. Sometimes I just feel like cause and effect are exagerated - like everything is happening because of what just came before it. Strange. Another sensation is wanting to go home. Right now they seem to be controlled but other times they come once a day. Sometimes they are weak, sometimes I don't communicate or take in any input at all - basically unconscious - though I don't fall down, either. If I'm alone, it's difficult to tell how strong they are. No runny nose, though. This may or may not help. It seems like one of the problems with diagnosing and treating these kinds of seizures is that everybody's are different. > Hi, > Yesterday I was working away when I was struck with VERY vivid deja [quoted text clipped - 19 lines] > Thanks for your time, > Jennifer > This may or may not help. It seems like one of the problems with diagnosing > and treating these kinds of seizures is that everybody's are different. Indeed. Mine are almost identical to each other but there are no obvious triggers (I keep a diary). It begins with the knowledge that it's going to happen, a slight feeling of - something - in my gut, the deja and a very slight worry that it might get worse. I'm completely conscious and functioning for the whole of the few seconds they take up - talking coherently and lucidly (I've asked) and doing whatever I was doing before. What bothers me is that they've been happening about once a month for years, this last week I've had three ... :-( Mary > > Hi, > > Yesterday I was working away when I was struck with VERY vivid deja [quoted text clipped - 19 lines] > > Thanks for your time, > > Jennifer In the last year I have started having deja vu episodes, but rather than feeling that something has happened before, I feel as if I have dreamed of it. In my case it never seems to lead to anything (that I can remember). My neuro says I have right-brain TLE. > I have similar sensations. Deja vu was how I originally described it to my > doctor. Now I call it a dream state, at least some of them feel that way - [quoted text clipped - 34 lines] > > Thanks for your time, > > Jennifer If you look down http://efa.org site, or via Howdy or Julie's websites (especially the descriptions of first aid for seizure types chart), you can look either for Temporal Lobe Epilepsy (Right side seizure focus will produce a Deja Vu sensation, as a Non-invasive method of guessing that the seizure focus (launch point) starts in the Right Lobe vs. the left one.) Older sites list information under Temporal Lobe Epilepsy. On Newer sites, it's grouped within Complex Partial Seizures, often. The fact that you just have the Aura without a progression to a Full C.P. seizure or stronger one, means it's just a Simple Partial type seizure (sometimes just called an Aura). If they got stronger or developed into a more pronounced seizure, the Dr. might adjust your Medications, since he hasn't they probably assume the Auras aren't happening often enough yet? (ever?) to need any adjustment. I used to get Auras when a storm front was moving in (rain or snow), due to drop in Air Pressure that affected level of headache, throbbing or pains I once got (produced by swelling of blood vessels temporarily during that Outside pressure drop). After the rain etc. had started, the feeling of 'brain fog' or 'restlessness' or anxiety passed. Last of those that were troublesome that I had were about 1999. I can still tell if I should take my Umbrella along if I go out (without needing a radio forecast), but the extreme discomfort or headaches I once had have passed. I don't know if these are things we can **All adapt to, or adjust to after they've happened a few times or not. I HOPE they are, since that would mean your's might clear too. SOME of mine (1993-6) from Temporal Lobe (emotions part), were also aggravated by people arguing near to me, extreme Noises, or distractions near where I was. If I moved away from the noise or distraction, the feeling then too would pass. Other period of the 'brain fog' I could get to clear by getting a cool drink (water or sprite/ 7 Up). The coolness seemed to help clean the 'fog'. G./ > In the last year I have started having deja vu episodes, but rather than > feeling that something has happened before, I feel as if I have dreamed of [quoted text clipped - 6 lines] > > movement is typical of mine. I get a tingling down my right arm for the > > stronger ones. Sometimes I just feel like cause and effect are exagerated - > > like everything is happening because of what just came before it. Strange. > > Another sensation is wanting to go home. Right now they seem to be > > controlled but other times they come once a day. Sometimes they are weak, > > sometimes I don't communicate or take in any input at all - basically > > unconscious - though I don't fall down, either. If I'm alone, it's difficult > > to tell how strong they are. No runny nose, though. > > > > This may or may not help. It seems like one of the problems with diagnosing > > and treating these kinds of seizures is that everybody's are different. > > [quoted text clipped - 21 lines] > > > Thanks for your time, > > > Jennifer Thanks GR. My right-temporal-lobe diagnosis was from an EEG - but that's also the side where lightning struck me at age 15. The doc refuses to speculate if that could have caused it, but that's my personal belief. He wanted to increase my dose when I told him about the deja-vus but I refused, and I'm still resisting. I'm going to an epileptologist in a month from now - we'll see if he has any further suggestions. The neuros I've seen (4 in the last 20 years) seem to have very limited knowledge of epilepsy! > If you look down http://efa.org site, or via Howdy or Julie's websites > (especially the descriptions of first aid for seizure types chart), you can [quoted text clipped - 80 lines] > > > > Thanks for your time, > > > > Jennifer Jennifer, I too have TLE (Temporal Lobe Epilepsy) and have had seizures like what yours are before... I have had epilepsy really since July 1980 sparked by a meningital infection... even though it wasnt properly diagnosed till i was 11. Lately I have been having weird seizures where i'd end up having the most weirdest taste in my mouth the next day and i can only drink coke to get rid of it... hope this helps and good luck with your doc Allie M. http://www.stixdesigns.com.au/epilepsy-support/index.html http://au.groups.yahoo.com/group/australian_epilepsy_group/ > Jennifer, > I too have TLE (Temporal Lobe Epilepsy) and have had seizures like what [quoted text clipped - 9 lines] > http://www.stixdesigns.com.au/epilepsy-support/index.html > http://au.groups.yahoo.com/group/australian_epilepsy_group/ **** The taste you describe above --- would it be kind of an 'itchy, lemon/ sour sort of taste' ? or more of an 'eggy acrid yucky sort of taste' ?? The former is a non-invasive sign that the seizure starts in the Right Temporal Lobe, the latter in the Left Temporal Lobe. If you get the tastes and are able to clear them like above, they're like mine and may be the Aura or Simple Partial Seizure happening in the particular lobe. It's not a Larger seizure or full Complex Partial since you've got that under control, but it is periodic Simple Partial Seizures (Auras). So are these happening more or less by themselves? since you said the **next day or are they another type than what I described -- i.e. is it a taste as you wake up in the morning first from sleeping? or after you've been up for a while? When those are happening might be different levels of intensity ( while asleep, vs. while fully alert at onset). If you're due for a Doctor's appointment, you should mention those to them, as they might decide to adjust the night-time? dose up slightly, even just on Alternate nights. If you're not, you have to decide if it's worth calling them to see if it's a sign that a slight dose change should be considered. (*My Pharmacist (Chemist) I found a valuable source, before I was online and Still, if I had questions about if xxx might be a side effect of Tegretol or Dilantin for example, and I could chat with her just by going in to the Store, without waiting for an appointment. I also don't know if that would help you here, but it might be a place to start.) G./ My pharmacist has been such a wonderful resource for so many things. I don't know if I'm just lucky or if all pharmacists are as willing to spend time with customers. What's an itch taste like? :) > My pharmacist has been such a wonderful resource for so many things. I don't > know if I'm just lucky or if all pharmacists are as willing to spend time > with customers. I'm not even going to comment on that :-) > What's an itch taste like? :) Rose hip seeds. Mary > My pharmacist has been such a wonderful resource for so many things. I don't > know if I'm just lucky or if all pharmacists are as willing to spend time > with customers. Just had a thought - does the free Howdy Dave for others? Mary Probably was supposed to be 'yucky lemon taste', on earlier post. (Your comment at bottom) Alternatively if I was referring to Left Temporal Lobe aura, I was told that it can include an Eggy **Yucky Taste or Foul sulphury odour. Since I don't have those I only post those based on websites or other's experiences. I don't look at the screen as I type, and scan message fairly briefly before I consign it to the Speelcheker, as it goes out. (Alternatively some of the time, like today, I get an 'itch' on top of my tongue that can become distracting if it doesn't clear in a short time. I can't remember as far back as 'yesterday' as I have limited 'depth of field', as part of the Right Temporal Lobe damage from the Encephalitis. ) What I intended as I composed a reply 2-3 days ago is often gone, after that period. That's why I often leave part or a large part of messages I reply to (like here) intact. It seems to distract and disturb the Lurkers from time to time, but if they don't participate it's their loss. If someone comes back after 8 days and says "what did you mean by 'swirling deja vu feeling' last week?", unless I have that note filed, it too may be gone unless it repeats something I've posted multiple times. G./ > My pharmacist has been such a wonderful resource for so many things. I don't > know if I'm just lucky or if all pharmacists are as willing to spend time > with customers. > > What's an itch taste like? :) G, The taste I was describing was a yucky taste but I cant exactly describe it. I've had times where my complex partials weren't under control but I still have to see my new neurologist about them in September. The seizures happens mostly by themselves without me knowing however my fianc?e hears about it because he witnesses them most of the time. Like last night just when I lied down so I could sleep ... I had a aura for about 1 min then it went to a complex partial so I definitely felt it this morning when I woke up really late... Most times that icky taste will become apparent when I've been up for a hr or so otherwise it does happen just as I am waking up. I know for a fact that my medication needs to be looked at ... I've been diagnosed properly with epilepsy since '92. Since then, I have been on: * Tegretol - in 1992 as a mono therapy and now as a complementary (was put back on in 2002-2003) * Dilantin - in 1994 as a monotherapy and didn't work one bit!!! * Gabitril - in 1995 and didn't work!!! * Epilim (Sodium Valproate) - since 1996 to present * Lamictal - since 1997 to present * Topamax - cant remember when I was on that ... my mum says that it wasn't a good time Like I mentioned ... I have a new neurologist here in Sydney aus and I don't have an appointment till September and that was the earliest appointment!!! but since I'm due to get a new prescription from my local GP for my meds I will have a talk to him about it ... I should also mention that my seizures do cause me to have serious migraine headaches. I had one last weekend which went for four days. Cheers! Allie M. http://www.stixdesigns.com.au/epilepsy-support/index.html http://au.groups.yahoo.com/group/australian_epilepsy_group/ > G, > [quoted text clipped - 33 lines] > http://www.stixdesigns.com.au/epilepsy-support/index.html > http://au.groups.yahoo.com/group/australian_epilepsy_group/ Dear Allie, I have dealt with similar symptoms for 26 years until November 2001. I have had two previous spouses, girlfriends, etc. observe things like this taking place. I had the deja'vu episodes until my mid '20s. I also had seizure problems in my sleep. Every kind of seizure you can think of in my sleep. I found it was linked to sleep apnea. After 1 minute without more oxygen to the brain, it would trigger some type of seizure. I am 39 now and have grown out of one type of seizure into another until I got ones in which I stood up and ran or stumbled, blacked out and woke up on the other side of the house. Now I mainly have problems with simple-partials and there are several triggers for it. Computer monitors trigger simple partials for me so I wear an eye patch. It takes both eyes for the monitor to trigger photosensitive epilepsy. Scrolling using adobeacrobat triggers mine the worst. Read this site if you haven't already: Epilepsy Newfoundland and Labrador: http://www.nfld.net/epilepsy/laephotosensitive.html My neurologist says lamictal and keppra are the "dynamite combination." This is true for me since he is the first one to get my seizures under control since they started when I was 11. I also take lorazepam to control clusters of simple partials. The site above was interesting to my neurologist, who is the head of seizure research at Vanderbilt University in Nashville, TN. He knew little of it. Only 3-5% of epileptics have photosensitive seizures. He has taken blood from everyone on my mother's side of the family and found it to be a deformed chromosome, working with geneticists in Montreal. My mother, several first cousins, and I have epilepsy. My son and one of my nephews show signs of it. All of us in the family have this set of chromosomes. All of us that have epilepsy have one of these chromosomes deformed. We cannot trace back any further up the family tree since my great grandmother was adopted. I am the worst in the family and have a bruised left frontal lobe. I used to not only wake up with that yukky, sometimes metallic taste in my mouth but I also smelled like a burned out electrical motor or something. I had to shower. University of Florida has a dog seizure detection program and wanted me to wipe myself down with a hankerchief and mail it to them to train the dogs. Luckily, I haven't had another like it since. I would get my doctor to try Keppra and Lamictal. I am 6'5", 255lbs, and I take 300mg lamictal and 3500mg keppra daily. "Keppra, added to Lamictal, which I had been taking for 3 months, is the combination that got my seizures under control enough to where I can live by myself again.' My neurologist gradually reduced some of the lamictal dosages to lessen the side effects of shaking. (I can't drink a cup of coffee with my left hand!?!) Best wishes, Eric Eric, Interesting that you should mention the sleep apnea because my dad suffers from it really bad ... He fell asleep at the wheel once and ran thru a red light right next to a police station... anyway back to me ;o).. I'm not sure if I have ever had the capability to have some kind of sleep apnea attack, however it wouldnt surprise me. I will mention this to my local doctor when I see him next and see what he says. Might be interesting. I have had the seizures in the past where I have blacked out, stumbled around the place and fell down (last week i nearly collapsed at my friend's work and that was embarrasing). I am a web designer and its annoying that I cant get a filter for my laptop (which is where I do most of my work on) for the screen. I was in hospital in 2001 to be assessed for surgery and was having a video eeg done for 2 weeks. They did a photosensitivity test then and nothing came of it. No one in my family has epilepsy or has any history of it... the only thing close to it is my dad had meningitis when he was 11 and I had meningitis when I was 2 months old. Allie M. http://www.stixdesigns.com.au/epilepsy-support/index.html http://au.groups.yahoo.com/group/australian_epilepsy_group/ > Interesting that you should mention the sleep apnea because my dad suffers > from it really bad ... He fell asleep at the wheel once and ran thru a red [quoted text clipped - 19 lines] > http://www.stixdesigns.com.au/epilepsy-support/index.html > http://au.groups.yahoo.com/group/australian_epilepsy_group/ I'm convinced that long-term severe sleep apnea, combined with some brain structural disposition for what followed and some oxygen starvation following heart atrial fibrillation, resulted in my nine-month condition (with many symptoms of motor, speech, and cognitive problems occurring episodically and often). SA was behind the fibrillation (and other heart problems), and it can also cause brain damage. I'm now in favor of screening for SA if there is any question about it (BTW, I did not show its most common symptom, tiredness) - and this can be done easily with the simple use of a blood oxygen saturation level recording device, available on loan from a medical equipment supplier by prescription. If this test shows low 02 levels at times during the night, a sleep study can then be done to determine the cause... -- David Ruether rpn1@cornell.edu http://www.ferrario.com/ruether David, I agree with you there re: sa testing but I don't know where in sydney I would be able to get that done without consent from my local GP. Allie M. http://www.stixdesigns.com.au/epilepsy-support/index.html http://au.groups.yahoo.com/group/australian_epilepsy_group/ g'day allie, it is quite possible that the meningitis may have some sort of brain trauma e.g. scarring which could be the source of your troubles. when i had some increase in seizure activity my neurologist ordered an mri which showed scarring on my brain which he thought was possibly due to fevers during my childhood. maybe you could suggest to your doctor that it might be prudent to do an mri to check for something along these lines. pablo > Eric, > [quoted text clipped - 21 lines] > http://www.stixdesigns.com.au/epilepsy-support/index.html > http://au.groups.yahoo.com/group/australian_epilepsy_group/ > g'day allie, > it is quite possible that the meningitis may have some sort of brain trauma [quoted text clipped - 4 lines] > to do an mri to check for something along these lines. > pablo My case is similar to this. Apparently my seizures are the result of scarring on the right temporal lobe, caused by viral meningitis when I was very young. When I had surgery, they removed a section of brain tissue, about the size of a golf ball, which hadn't developed as a result of this. Unfortunately they were a little too conservative in the amount they removed and the seizures returned with a vengeance after a few months. Darryl. G'Day Pablo, My childhood neurologist said to my parents that my meningitits could have a significant part in my epilepsy. When I was tested for vns surgery in 2001, they found that there was scarring in my right temporal lobe but it was unoperable.... I don't see my new neurologist who I havent had one appointment with yet untill september. Take Care mate! Allie M. http://www.stixdesigns.com.au/epilepsy-support/index.html http://au.groups.yahoo.com/group/australian_epilepsy_group/ |
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