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Medical Forum / Diseases and Disorders / Epilepsy / November 2005General Advice?
Hey Everyone. I am new to the group and fairly new with my situation. A couple weeks ago I had gotten up and was getting ready to go downstairs to get juice to take some meds and I passed out and fell down the stairs. My neuro thought it was related to heart problems and diagnosed it as syncope and immeadiately ordered an echo and a 24 hr Holter monitor. However while wearing the monitor I woke when my alarm went off and I had lost control of my bladder at some point during the night. Freaked me out! So both tests came back normal and she is now sending me for an EEG on Monday because she thinks I could be having seizures in my sleep. I take Topamax every night to control migraines. Once I got up to 100mg is when I first passed out. I have never noticed up until after getting to that dosage of the topamax having any problems that were seizure like. I know Topamax is an AED and thats why I don't think it could have triggered this, but has any ever had something similar to this. My neuro told me it was AL state law to not drive for 6 months after my incidents. I am 19 yrs old and this has all just started so suddenly that I know of anyway. Any words are welcome because I'm scared and pretty much in the dark on this. By the way, y'all seem to have a wonderful group of people here. Katie > Hey Everyone. I am new to the group and fairly new with my situation. A > couple weeks ago I had gotten up and was getting ready to go downstairs [quoted text clipped - 18 lines] > By the way, y'all seem to have a wonderful group of people here. > Katie Hi. You might have registered here after a post I just did about 3? weeks ago so I'll append it here. It includes a bunch of sites that I've found useful over last few years. Julie posts here regularly and maintains the Idaho website for them (and us!). There are useful safety items and other things you might not have read. Your Pharmacy might have given you a page with new medications but if not the efa.org site has a medications glossary. You can click onto that and enter the med. name to see what's listed there. Other people here have used Topamax and might reply over next 2-3 days to your post. Look and see if there are any things that might conflict with it. (For example Grapefruit Juice cancels the effectiveness of the Tegretol that I use, and alcohol can conflict with several of the Anti Ep Drugs (AEDs).) I think there's a printable version option on some of the sites if there are a lot of graphics or other things you might not need on a paper copy. My Neuro told me that incontinence (if it happened) is more likely to happen during the night, as our guards tend to be lower while we sleep. Usually they'll adjust your Night Dose up slightly until that problem stops. Lots of us have done that, don't let it get to you. The driving thing is fairly standard in most jurisdictions around the world, as until you're controlled any accidents caused by uncontrolled seizures often cause liability insurance to be void. Once you get full control you'd be allowed to drive again. Also this is an International Group, so you'll often get replies over next few days too as the various timezones see your post. (I sort my messages by Subject, and that keeps them together for easy followup -- geek stuff.... ) Here's the old post, you can look at the sites and if you like them many are worth putting on a bookmark (or favorites) so you can go look at them whenever you want. (Julie often updates the Idaho site, so new things might be added from time to time. Same with Ep. Foundation of America / efa site.) Here's the site list --> I posted this list of websites about 3 weeks ago. Here it is again. --> "G.Ross" <> wrote in message > I did a post before, where I listed some websites I'd found > along my travels. One of them is Howdy Dave's site, if you have some of > his posts **(His site address is listed below now). The main Idaho Epilepsy News site is at http://www.epilepsyidaho.org . Within that are links that also go through an Education area called Learn about Epilepsy -- at http://www.epilepsyidaho.org/learn.htm. Often some *symptoms people **exhibit give clues to *type of seizures they're having and best described on a First Aid for Seizures Chart. These are my favorites -- also from Epilepsy Idaho. One is http://www.epilepsyidaho.org/seizure2.htm and that links to http://www.epilepsyidaho.org/seizure.htm . One of those is easier to print, although both display well for information or reference. There is also a separate page for First Aid in Water I didn't include, although those sites might link to it. What to do when someone in swimming is somewhat different that if they were to collapse 'on land'. Howdy Dave has a site he put together ~10? years ago and he regularly updates. He was also one of the oldest :-< members of this group and someone told me he was one of the Founders too. Most people don't know that, so he doesn't get a swelled head or anything.. :-> His site is at http://www.howdydave.com . G2R2/ > I have a few sites I used to post but they're not handy at the moment > and I'll be offline shortly. The main U.S. Ep. Foundation website is at > http://efa.org . THIS SITE Has a Medication Glossary, although I found > my own pharmacist a useful source of information if I had Side Effects or > Questions about using a particular prescribed pill. // G./ > My neuro told me it was AL state law to not drive for 6 months after my > incidents. I am 19 yrs old and this has all just started so suddenly > that I know of anyway. Any words are welcome because I'm scared and > pretty much in the dark on this. Hello Miatagirl, and welcome to the newsgroup. I'm also pretty new myself, so I can't give you as much info' as Gordon can, but as I have many different kinds of seizures, I'd like to share with you how my nocturnal ones were, like yours the most scary ones. Although I'll be 40 in early January, and started getting seizures since the age of 9, they aren't as scary as they used to be nowadays, but after I was told about how under 30's were more at risk of dying from nocturnal seizures than over 30's it scared the life out of me. I'm not particularly trying to frighten you any more than you already are, but I just feel that if you have nocturnal fits at an age that is considered "at risk", then you really should get yourself all the information as you can about it. It's called "Sudden Unexpected Death from Epilepsy"(SUDEP), and I really think that you should ask your neuro for at least a little info, or a leaflet about it. All the best Sofie  SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ > Hey Everyone. I am new to the group and fairly new with my situation. A > couple weeks ago I had gotten up and was getting ready to go downstairs [quoted text clipped - 18 lines] > By the way, y'all seem to have a wonderful group of people here. > Katie Below is a post that Barb (a regular around the group here) did when we were discussing SUDEP back about February. A talk I saw in Toronto 2 years ago, the Dr. at that time said that they didn't have any profiles on who was at risk, that it happened sometimes, but the proportion of the general seizure population was low ? (so you don't completely panic before you speak to the Dr.) There might be more information now that the Doctors have. The speaker I saw said that some of the research was tending toward it being caused by a 'Fibrillation' sort of effect in the Brain, on *some types of seizures, where the particular type triggers but doesn't finish as other types might, and so the heart beat or breathing rate gets messed up enough to cause the person to pass out more strongly than just with a 'normal seizure'. Below is an old post from Sophie that was a reply to one Barb (Cyber) did back then (see date). --> On Sat, 26 Feb 2005 13:45:24 -0600, CyberCafe wrote: > I had a bunch of questions on how a medical examiner (or appropriate > official) could even suspect the cause of death was from SUDEP, and SOME > of my questions were answered at this web site: > http://www.emedicine.com/neuro/topic659.htm Thanks Guys, I found the websites you gave me very informative and interesting, in particularly the part on the "Summary for possible risk factors of SUDEP" on the website above. Thanks again Sofie You guys are so great! Thanks for the links and info. Sofie...don't worry about scaring me. Believe me the neuro did that just fine on her own when she said she thought it was my heart and then when those tests came back normal and I had the incident in the night said she thinks I could possibly be having seizures. Its quite alright. If its not seizures...I'm not sure where the neuro will turn to next. Anyway just wanted to say thanks. And Gordon THANK YOU for your wealth of knowledge! --katie ok i forgot to put this in when i posted before but is a metallic taste in your mouth/throat associated with seizures? Some mornings I notice I wake up with that. Do you Sofie after you have any of your nocturnal seizures or any of your seizures? Thanks! > ok i forgot to put this in when i posted before but is a metallic taste > in your mouth/throat associated with seizures? Some mornings I notice I > wake up with that. Do you Sofie after you have any of your nocturnal > seizures or any of your seizures? Thanks! If you get this in time, ask the Dr. if she has a 'name' for the type of seizure she's giving you the Topamax for. A metal taste can come from two things. 1) Some of the seizure types, like in one of the Temporal lobes can produce either a lemon or eggy taste that's not there (it's part of the Aura - simple partial of a stronger seizure). And I think some of the other seizure types can have an Aura similar to what you describe. But 2), another reason is if they Don't think it's related to your seizure type, it Might be from tooth fillings if you are grinding your teeth while you sleep (nocturnal seizures). If they thought that could be the case, I can tell you more about a Dental Appliance you can get (an Occlusal Splint), that you wear to prevent tongue or tooth damage until your Nocturnal seizures are controlled, or just for general protection. You could ask the Dr. about that (Splint) and if they thought it was worth going ahead with or if you might need a med. dose adjustment *only. If the former I can give you more information on that, and approx. cost if you don't have dental insurance -- there's nothing Gross you might associate with Dentists in getting fitted for one of those. But they sure improve ability to sleep through the night if you're having Nocturnal Seizures. But a night time dose adjustment could help too. G./ Gordon as of right now all I take the Topamax for is migraines. She suspects I have the nocturnal seizures and thats why I am going for the EEG tomorrow. They are doing a sleep deprived one so we'll see (thats why this post is so late..have to stay up late) Anyway, I didn't know that a taste is considered an Aura. I guess I just thought they were visual type things. Thanks for the info and if I am able to see her tomorrow to get the results of the EEG I will ask her about the metal taste. Because I only get that some mornings right after I have woken up. Thanks G. Good luck on your EEG.You have seizures and migraines both? I do too and now he wants a portable EEG for me for 3 days. P Thanks. And there is a possibilty that I have seizures on top of having migraines. That is why my neuro ordered the EEG. I had the EEG done today and wow was I tired this morning. I woke up with such a migraine. I guess due to the lack of sleep. Anyhow, the strobe light scared me due to the reaction I had from it. Between the color, pattern and whatever else was going on with it...I got so anxious. I also did the deep breathing for 3 min and became extremely lightheaded and almost to the point where I felt like I was going to pass out. I haven't gotten the results back yet. Hopefully we should here something tomorrow. Has anyone had the sleep deprived EEG done before? How did you react to those stimuli? I have had 2 sleep deprived EEGs.They didnt really bother me, the lack of sleep did but not the actual test. p > Thanks. And there is a possibilty that I have seizures on top of having > migraines. That is why my neuro ordered the EEG. I had the EEG done [quoted text clipped - 7 lines] > anyone had the sleep deprived EEG done before? How did you react to > those stimuli? > the results back yet. Hopefully we should here something tomorrow. Has > anyone had the sleep deprived EEG done before? How did you react to > those stimuli? In fact, I had one this morning. I've had several EEGs earlier, and I always found the lights more amusing then disturbing. The first time I had one was back in the psychedelic 70's, and it was a great light show! However, I've always hated that hyperventilation, though using it as a conscious breathing exercise has made things a lot easier. In my case, the biggest worry was the sleep deprivation, not only do I suffer from insomnia, but lack of sleep has always been one of the main seizures triggers. In my case none of my EEGs have ever given any resultsat all. I still don't think the flashing/hyperventilation was very differest from the previous ones. It also gave me the opportunity to sleep for the first 45 minutes. Which I couldn't . . :-). Does anybody know if the sleep deprivation now is sort of replacing the regular ones? Anyway, I really hope this test will be useful to your Dr. to be able to conclude in one way or the other. Hope you'll get a good night's sleep now. the very best of wishes, ole k SignatureIf a problem can't be solved, then what is the use of worrying? If a problem can be solved, then what is the need of worrying? (Shantideva) > Thanks. And there is a possibilty that I have seizures on top of having > migraines. That is why my neuro ordered the EEG. I had the EEG done > today and wow was I tired this morning. I woke up with such a migraine. > I guess due to the lack of sleep. Anyhow, the strobe light scared me ***************************************************** > due to the reaction I had from it. Between the color, pattern and ****************************** > whatever else was going on with it...I got so anxious. I also did the > deep breathing for 3 min and became extremely lightheaded and almost to > the point where I felt like I was going to pass out. I haven't gotten > the results back yet. Hopefully we should here something tomorrow. Has > anyone had the sleep deprived EEG done before? How did you react to > those stimuli? Many of us have a photosensitive effect, that shows up most prominently from the Strobe light part of the test (I think it's from the Frequency per second of the Light Flashes, not so much either the brightness or even the colour usually). No more Discos for us !! :-< The BeeGees CDs don't have the lights on them... We even have Fire Trucks, Police Cars and Ambulances here who use the White Strobe to get attention of drivers who haven't seen the Red Lights in their rear view or heard the siren behind them. I usually look away as I walk along the sidewalk, but wondered what effect that might produce if I was Driving (and controlled until then) to have one of those come up Behind me and Zap me with a 30 per second? Light Burst just to get me to pull over when I'd have already been doing that. (I took a defensive driving course years ago, and would have seen the vehicle half a mile behind me if they had the lights already on.) But that Aura it produces is **Really uncomfortable isn't it? I even forgot I was in mid-test for the 5 or so seconds it was producing the Waves on the EEG Chart. It's extremely likely they got some Really good EEG waves, during that part of your test, based on your reactions above. Some people have to either do the sleep deprived or more than one EEG, as the szrs. have to actually be triggered while you're wired up, or they won't necessarily get the waves that help them determine where the reactions are happening. Luckily for you, they might have found what they need. G./ Well I got my results from the EEG and they came back normal. Good news however that doesn't explain why I just passed out and fell down the stairs and then of course what happened during the night. I am almost at a loss for words. *sigh* Everytime I get into the car I can't continue to think "Am I going to pass out?" Guys where do I go from here? It is my understanding though that even people who do have seizures can come back with normal EEGs correct? > here? It is my understanding though that even people who do have > seizures can come back with normal EEGs correct? What me concerns, yes. I guess that's why my neuro insisted on doing a sleepdep. EEG as well. This after having done a regular EEG, MR scan and a one hour long interview. In other words, it seems to me he's really serious about this. As far as I know, all my EEGs since the early 90's have shown little or nothing at all. /\ ole k > Well I got my results from the EEG and they came back normal. Good news > however that doesn't explain why I just passed out and fell down the [quoted text clipped - 3 lines] > here? It is my understanding though that even people who do have > seizures can come back with normal EEGs correct? Below is a post on another Thread done yesterday while we were replying to you. Even though the EEG does not show activity, it usually needs to see Activity currently happening, during the test, to locate where it's coming from. Until you find what is causing these, even if it's something Other than seizures (allergy, heart murmur or ??) I think you should consider not driving. Even if you keep your licence until you find the source, it's better not to drive. An accident while you're 'away' could injure others and ultimately reflect back on all of us. Or at least it could affect innocent people in other cars or on the sidewalks for the rest of *their lives. Here's the reply on the longer thread where we were discussing this with a fellow in the subject titled "Driving Re: After a Seizure" . --> To the original poster and all that replied, my question is simply this if she is having seizures if even just one why take the risk? I did just yesterday and ended up in a traffic accident, but it doesn't end there, this wasn't my first. No this was my third accident. I have thought I could tell when the seizures were coming on and I have been wrong three times. Yesterday I did something that nobody expected, I surrendered my driving privilege. It was not taken from me I ask for it to be taken. The policeman even questioned me about being serious about it and I ask him to please take them from me. I have a business and really need to drive, this is going to be a hardship like I don't want to face but I am going to do it no matter what. I don't care if I am seizure free for 6 months, 1 year, 2 years, I will always remember waking up after normal driving with blood everywhere and wondering what the hell has happened to me. I am extremely lucky that each of my accidents I was the only vehicle involved. Never was anyone else involved. I have been cut up pretty bad but never had to be hospitalized but if I were to continue driving next time I may hit another car and kill an entire family and the worst thing would be I would probably survive. I will not put YOU in jeopardy of my seizures by driving any longer. So I ask the original poster if you love your wife as I expect you do, do her a great favor and don't allow her to drive, she may not get three chances as I did. SignatureI wish you all the best Tim Wise www.onepest.com www.askourpros.com > Well I got my results from the EEG and they came back normal. Good news > however that doesn't explain why I just passed out and fell down the [quoted text clipped - 3 lines] > here? It is my understanding though that even people who do have > seizures can come back with normal EEGs correct? It's also surprising too, since you described (earlier this thread) being extremely uncomfortable during part of the test? That sounded a lot like my EEG (and Aura), and it was there (I assume) where they found the Right Temporal Lobe spikes that identified the area where my szrs. started. I had hoped they had found a similar area for you. Not just because it would explain where these are coming from, but because many of the Newer Meds. are often targeted for a particular area or seizure type, and that would help them prescribe something for you that would help. I'm sorry they didn't find anything, figuratively, there. Since we still don't know what's causing these to happen, you just know they are still happening. I hope the Dr. or ?? has some other ideas where to look for what could be causing these. (If you're using any pills, did you look at http://efa.org medications glossary to see if there are other things that might conflict with any pills? I found the Grapefruit Juice and Tegretol Conflict completely by accident there, before my Drugstore had that listed on the printout that came with Tegretol Prescriptions. They added that now after I took them the Printout I had found, and since they're a National Pharmacy Chain, that's on all the printouts across Canada too.) I hope you're eventually able to find what it causing these, as they don't likely just appear out of nowhere without some physical cause somewhere in the mix. Keep us posted, and watch to see if others might have ideas over next few days. Some people don't read the group each day, but we all care about this. G./ You guys are so great! Thanks for the links and info. Sofie...don't worry about scaring me. Believe me the neuro did that just fine on her own when she said she thought it was my heart and then when those tests came back normal and I had the incident in the night said she thinks I could possibly be having seizures. Its quite alright. If its not seizures...I'm not sure where the neuro will turn to next. Anyway just wanted to say thanks. And Gordon THANK YOU for your wealth of knowledge! --katie |
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