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Medical Forum / Diseases and Disorders / Epilepsy / July 2004Adding Topamax to my Dilantin Regimen - Any experience here?
Hello fellow patients, I have been diagnosed with temporal lobe seizure on the left-side of my brain, and have been around it for about 5-6 years. I've been on 400 mgs of Dilantin ...my seizures were "somewhat" controlled meaning I would stop getting blackouts and loss of conscienceness but would still get the occasional partial seizure - temporary loss of speech, deja vu, falling out of bed feelings. I told my doctor that i've been used to these partials and have been able to live and work a normal life. Unfortunately after another MRI and EEG he is worried that my epilepsy is spreading, which is common with temporal lobe sizures - because of these "break-through" seizures that should be controlled with meds. Anyways, surgeory CANT be an option since the left side of the brain controls speech, auditoriy functions etc. His second option was a 2nd med to supplement the dilantin. He prescribed me topamax 50 mgs a day. Anyways I'm writing here for a few questions: 1. Anybody here on topamax currently? benefits? is it working? this question is esp. true for anybody with TLE. 2. what is topastupid? i've heard that term being floated around...anybody here using topamax and dilantin? results? 3. anybody know how common TLE spreads - thats the one thing im scared about. thanks for all your help! good luck to you all and i hope our brains work normal one day! I've been relatively seizure-free for about 2 years but I spoke with my doctor today and he noticed that I am getting more "break-out" seizures since I am getting some auras again. I've never heard of epilepsy "spreading". My neurologist has talked to me of the possibility of seizures increasing in severity and frequency, but as far as I know (which, granted is limited) unless your epilepsy is caused by a tumor of some sort there is no aspect of epilepsy that could be picked on an MRI. Again, I could be all wet. An EEG could be picking up more abnormal brain waves then before. That could be anything. It could be transient or permanant. Mine vary widely with my monthly cycle (are you male or female?). Topastupid refers to one of the common sides of Topamax. I was just on it for a week, but Zonegran (what I'm on now) does the same thing. Thoughts of things like where you parked the car, which street your house is on, why you even went to the store in the first place, that it's on the feeling get 100 times worse. But it's still 1000 times better then the seizures, AND I've lost almost 30 lb so far thanks to the loss of appitite side. So it's not all bad. I hate those is-this-a-seizure-starting feelings. I almost hate them more then a seizure. It gets so the fear of having one gets worse then actually having one. > Hello fellow patients, *G* Many (most?) of us aren't patients any longer except during occasional trips (if needed ) to our Dr. Last time I saw my Dr. in person was 1999. He renews my pills by phone to the Pharmacy. / > I have been diagnosed with temporal lobe seizure on the left-side of > my brain, and have been around it for about 5-6 years. I've been on > 400 mgs of Dilantin ...my seizures were "somewhat" controlled meaning > I would stop getting blackouts and loss of conscienceness but would > still get the occasional partial seizure - temporary loss of speech, > deja vu, falling out of bed feelings. **** I posted some news sites here last ~2 days. Usually the Deja Vu sensation is an aura of a Right T.Lobe event. Whether that would be from any sparks flying across to there or whether your szrs. were from there originally I couldn't say (not being the Dr.). Dilantin is usually prescribed first since it's one of the oldest, most studied and Cheapest Pills, since the Research costs were recovered ~70 years ago. I had erratic to Poor control with it during the 12-18 months we tried it. Others here can comment on use of Topomax for Temporal Lobe seizures (newer term is often included in Complex Partial Seizures if you do any Net Searches for information related to your type. You *might get more information there than under TLE. I was first put on Tegretol Controlled Release, and adjusted up over about 2-3 years. It worked for some longer periods without incident, sometimes 4-8 months between seizures. When I started to get more seizures, we reduced the Tegretol CR and added a new Med. that had just been approved in Canada (Frisium = Clobazam), and adjusted it somewhat over 1995/6. Last 2 szrs. I had were Dec.97, June '98. That only matters since in 1993 they suggested I might have to be 'happy with 2-3 szrs. per month as a Target' to hope for. There are *Lots of medications to control TL Seizures, long before surgery would usually be considered, and I don't know how easy it is to operate on that part anyway. (I've *seen it done on a TV show, but the T.Lobes are behind your cheeks above your mouth -- not a Handy place to get at wrt. surgery.) / > I told my doctor that i've been used to these partials and have been > able to live and work a normal life. Unfortunately after another MRI > and EEG he is worried that my epilepsy is spreading, which is common > with temporal lobe sizures - because of these "break-through" seizures > that should be controlled with meds. *** Others might have comments on above. You're the First person I've heard who had 'spreading epilepsy'.... Most of us they locate the seizure focus (or more than one), and then either treat the location with a particular targetted med. OR, if surgery were needed, it would go to One place -- not to one that was 'spreading'. Each side of the brain controls certain functions, and one side is usually more Dominant and Important than the other. They wouldn't remove BOTH Temporal Lobes, for example, or you would no longer be 'you'. (The T.Lobes used to be called the Seat of the Soul, since they're where we store Who we ARE in... Without Both of them, we'd have no concept of an us? ) Opinions anyone? / > Anyways, surgeory CANT be an option since the left side of the brain > controls speech, auditoriy functions etc. His second option was a 2nd [quoted text clipped - 6 lines] > 2. what is topastupid? i've heard that term being floated > around...anybody here using topamax and dilantin? results? *** Perhaps someone on Topamax? will recognize that, I haven't seen That phrase used here since 1998. As a Guess, if some of the Anti Ep Drugs (AEDs) get to too high a Blood Serum Level, we can act disoriented or drunk. That was the case with Dilantin if it is taken faster than the body can remove some of it. It also applies to Tegretol and I think Topamax. Usually if that were the case they might try a Lower Dose more often during the day to keep a blood level. MOST of the AEDs don't work well with **Alcohol, Antacids and Stomach Cleansers and sometimes other things. There's a detailed Medications list under http://efa.org site? that might list other things. Your Pharmacy should have given you a printout about your particular meds. Tegretol for example is Compromise by Grapefruit Juice, and that's on the Pharmacy printout now here. / > 3. anybody know how common TLE spreads - thats the one thing im scared > about. ***G.** We have a Doctor in California :-> who Posts from time to time who might have a comment. We also have about 40-50% of the General posters who have some type of TLE who might have websites or information. You're the First person (like I said) since MY Onset (1993), or online Here (1997) who has mentioned TLE spreading. Unless electrical damage or other effects before it was controlled damaged something, I don't know why it would 'spread' since it's not a 'disease' for example. Would they be REFERRING to the seizure 'Generaliing' AFTER IT has started?? I used to get That. Mine would start in Right side, and as my loss of awareness etc. kicked in, the Electrical actions would Spread to the rest of my brain (Secondarily Generalize) then I'd PASS OUT. THAT Action during the seizure, is not so much the Epilepsy "Spreading" like I got impression you were worried about (like a rash or chicken pox), as a temporary Electrical disruption that takes off only while the szr. is going on. / > thanks for all your help! good luck to you all and i hope our brains > work normal one day! > > I've been relatively seizure-free for about 2 years but I spoke with > my doctor today and he noticed that I am getting more "break-out" > seizures since I am getting some auras again. *** I used to call mine Breakthrough seizures, but don't know if either is a medical name but it worked for me. *IF you're getting AURAS, those are groups under Simple Partial Seizures, and while those are happening , the Med. is not giving 100% control. If those Increase, they might have to Dump the Dilantin, and do something with the Topomax or other AEDs (like mine I listed above). Tegretol by the way, I think is one that shouldn't be use by Ladies who might plan to become Pregnant or use Birth Control Pills without using a Second type of B.Control... I don't know if that applies, for example, to Dilantin. But my Dilantin control was so Incredibly Random, there are a Lot of things that might stop it working for short periods (long enough to get auras or szrs.). IF you can, Try relate anything else that happened or you ate /drank (like alcohol above) in 6-8 hours ahead of the szrs. as you have any. Good look. It's worth trying more than one pill. Control is SO NEAT, once you get the Mix that works for you. G.R./ > Hello fellow patients, > [quoted text clipped - 24 lines] > 3. anybody know how common TLE spreads - thats the one thing im scared > about. Not sure what you mean as I'm intepreting that question a couple of different ways in my mind. Can you explain in more detail? > thanks for all your help! good luck to you all and i hope our brains > work normal one day! > > I've been relatively seizure-free for about 2 years but I spoke with > my doctor today and he noticed that I am getting more "break-out" > seizures since I am getting some auras again. Personally, I would not consider you to be seizure-free if you are still having the deja-vu, speech problems, etc. Barb Wait... Seizures don't spread unless its a tumor? I don't think thats true according to this: http://www.epilepsy.com/epilepsy/epilepsy_temporallobe.html Unfortunately, in about 60% of people with TLE, the seizures spread from the temporal lobe to a wider portion of the brain. This process is called secondary generalization. The result is a convulsive (grand mal) seizure. As far as what I'm asking...I'm just scared that its going to spread - sorry I have a habit of typing one thing and thinking another thing - damn epilepsy. There's not much to do but hope dilantin and the topamax works together! good luck to you all! > Not sure what you mean as I'm intepreting that question a couple of > different ways in my mind. Can you explain in more detail? [quoted text clipped - 10 lines] > > Barb Any seizure can progress into another type, just like a muscle cramp can progress. Epilepsy is generally not a progressive disease. The 3 of us who replied were trying to get a handle on what you meant by your fear of your seizure spreading (your 3rd paragraph from your post below-- I marked with ***s). We (I) had the impression you were afraid that the symptoms you had would move (like an infection) to other parts of your brain, as opposed to 'generalizing'. . A couple of us mentioned that some seizure types (including our Temporal Lobe types) might 'secondarily generalize'. That's described in the article you included below. It's also explained on several other news sites under the efa.org site and others that the group posts from time to time. That's usually why some more modern sites refer to the seizures as Complex Partial Secondarily Generalized (that are mentioned in your article). When I had those and they weren't controlled, it was at that point where I'd lose consciousness as the Waves of Electrical Activity would wash outward (analogous to waves washing across a beach). It was at that phase that I'd no longer remember what I said or did, and I'd often lose consciousness as the Generalization spread. It was common during those times for me to wake up on the Floor, or in a chair but with a Notepad covered in Picasso style doodles or Gibberish repeated words on a page I had been writing on before the full seizure struck. Usually, as I got closer to full control, I had a longer period where the Aura (dizzy, swirling sensation with a Lemon taste or odour) would warn me that I was at risk of a stronger seizure and I could move somewhere Safe or away from a crowd if I wanted to try come out of the full seizure alone. As I got above 90% control with Medications, I'd then only get an Aura, and then it would clear. I've probably had only 2 auras so far All this year. Depending which Temporal Lobe is affected you might get a Deja Vu feeling (right side), or a jamais vu (left side) feeling -- where your own place might look like a Stranger's. It's those sensations during the Aura Phase, where a Doctor can determine before further tests, the likely location where the Electrical Activity is starting. G./ > Wait... > Seizures don't spread unless its a tumor? I don't think thats true [quoted text clipped - 8 lines] > > As far as what I'm asking...I'm just scared that its going to spread - ***************************************************** > sorry I have a habit of typing one thing and thinking another thing - > damn epilepsy. [quoted text clipped - 15 lines] > > having the deja-vu, speech problems, etc. > > Barb g'day welcome to the group. > Hello fellow patients, > [quoted text clipped - 18 lines] > 1. Anybody here on topamax currently? benefits? is it working? this > question is esp. true for anybody with TLE. I took topamax for a couple of months and it worked well to control my seizures. it also helped me lose heaps of weight. But the side effects forced me change off it. > 2. what is topastupid? i've heard that term being floated > around...anybody here using topamax and dilantin? results? i've never heard the term but i'd say it refers to it's side effects. i found when i took it that it badly effected my memory and caused bad depression. i almost had nervous breakdown the effects were so severe. but the side effects i suffered may not affect you because as they say we are all different so give it a go for a couple of months, it may agree with you. one thing i also found was that adter i started it and each time i raised my dosage i felt like crap for a couple of days afterwards. pablo > 3. anybody know how common TLE spreads - thats the one thing im scared > about. [quoted text clipped - 5 lines] > my doctor today and he noticed that I am getting more "break-out" > seizures since I am getting some auras again. "BigHeadAche" ha scritto : > 1. Anybody here on topamax currently? benefits? I use for a year topamax, increased until 400mg gradually, with tegretol 400mg(carbamazepina). With topamax I do not have epilettiche crises. ciao I was on Dilantin and Mysoline and was not under control, the DR added Topamax and it worked for about a month with no seizures at all. Then they were back. I was supposed to come off the Dilantin and had started that process, I thought it was causing the seizures to return so I went back on and to no avail the seizures continued. I went back on the trek to get off the Dilantin and finally got off of it completely a week ago last Wednesday. Today is the start of my 7th day seizure free. I have had no noticeable side effects other than appetite suppression from the Topamax. While building up on it I made a slight mistake one day and took a double dose, and yes it was a mistake, and it made me sicker than hell. But it only lasted that one day and that was it. I am very happy with what it is doing for me.  SignatureI wish you all the best Tim W www.onepest.com g'day tw, i found when i swapped onto topamax that i still had a few seizures particularly each time i reduced the dose of my other medication (epilim) but i found it was great for seizure control. the appetite suppression was great too. i only wish the other side effects hadn't been so severe. good luck for continuing success. pablo p.s. it really does make you feel sick when you increase dosage or accidentally double, i found that as well. > I was on Dilantin and Mysoline and was not under control, the DR added > Topamax and it worked for about a month with no seizures at all. Then they [quoted text clipped - 7 lines] > a mistake, and it made me sicker than hell. But it only lasted that one day > and that was it. I am very happy with what it is doing for me. > p.s. it really does make you feel sick when you increase dosage or > accidentally double, i found that as well. Oh God does it ever. I was sick as hell for a good 24 hours. If only I could have tossed it up and been done with it but nooooo it had to stay and kick my arse all day long. That has not happened again. Today was yet another of those wonderful days better known as "SEIZURE FREE!" The best to you as well Pablo. SignatureI wish you all the best Tim W www.onepest.com |
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