 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Epilepsy / November 200720+ seizures daily from temporal lobe tumor
Four years ago I was diagnosed with a low grade glioma in the left temporal lobe and now I'm having 20+ seizures per day on average despite taking 460mg Dilantin + 1000 mg Keppra daily. The oddest part is I've never lost conciousness or lost muscle control to a point where I couldn't walk. Sensation is like the onset of a stroke with the right facial droop during more significant seizures. Intense aerobics like running or cycling tends to trigger seizures about 10 minutes into the exercise but if I can work through them I reach a point where they no longer occur. Can anyone relate to these symptoms? I've not had any surgery other than a minimal biopsy last year and no radiation or chemo thus far. > Four years ago I was diagnosed with a low grade glioma in the left > temporal lobe and now I'm having 20+ seizures per day on average [quoted text clipped - 7 lines] > symptoms? I've not had any surgery other than a minimal biopsy last > year and no radiation or chemo thus far. Hi. This group has had low volume of repliers since earlier this year, but I'll add a couple of comments until someone comes along who's used Keppra and what it's for. (The http://efa.org site has a medications glossary, the might also list which szr. types it's used for if you don't know the names already (helps w. searches,etc.) or you might already know the terms.) Dilantin is often used first for many types as it's oldest, longer studied and most of potential side effects have been documented for Drs. etc. *My understanding is if you're not collapsing at end of the seizure that it's listed as Simple Partial? while many of the others end with full collapse. You might also want to look at the term Aura wrt. epilepsy as it describes some of the sensations you are having, and many of us get before a full 'drop down' szr. onset. Without being a Dr. I'd guess that some of the onset after exercise might come from either increased heart rate (higher oxygen getting into the blood?) or possibly the fatigue stage -- either of those can lower our seizure threshold and if we are prone to onset might make us susceptible to a seizure. I also saw a post (year ago) giving a term for the facial effects you describe, but haven't had it and don't recall what it's called. I would expect it's also part of the reactions that produce the aura, but don't know. (I had Right Temporal Lobe seizures that took 2-3 years to find a Med. Mix to get full control, but Dilantin (for me) wasn't it. I use Tegretol CR and Frisium (clobazam). Many of us, if they're still reading here, can use 1, 2 or 3 AEDs in combinations that work for a particular szr. type and seriousness of the ones we have.) Has the Dr. ever suggested tinkering with the dose, or reducing either of those and adding a third (!!) type of pill to seek more control than you're getting so far? There were 1 or 2 people here (late 1990s) who were on low doses but taking several (more than 3) pills to control a complex range of their types. I don't have any experience with post-surgery considerations or what might work with the pills you're using now. Hopefully someone else will see your post and contribute something. (We originally had about 10 people in North America, 2-3 in New Zealand and Australia, several in the UK, Scandinavia, and Europe, so the internet was handy as they'd see a post over 2-3 days as their timezone picked up postings.) Last, for now, I posted about a week? ago a subject like 'Websites of use to newer people' that listed about 6-7+ websites. If you haven't seen other websites, you might want to see if you can find that post, and look at a few of those, in case there's something you can use. Cheers, G./ > > Four years ago I was diagnosed with a low grade glioma in the left > > temporal lobe and now I'm having 20+ seizures per day on average [quoted text clipped - 54 lines] > find that post, and look at a few of those, in case there's something > you can use. Cheers, G./ Hi, Did they take out the glioma or just biopsy it? If I had a small area that they could remove without removing the entire temporal lobe I might consider it. Kepra didn't work for me I have tried so many drugs recently but I have break throughs one a month. Tegratal, lamictal and trileptal seem to target the temporal lobe maybe trying them might give you better control. I also met someone that was on topomax with complete control that is one I haven't tried. Since I get a huge aura warning me I just started trying EFT. They are meridian points that you tap. There is a website. I read in a newsletter over the summer where a women described doing the EFT whenever she felt a seizure coming on and stopped it. Are you able to stop yours at all by flicking your eyes or changing your thoughts. I start to zone in on voices or different things and my brain waves change to alpha waves which are very slow. We have them during our sleep. I now have more nocturnal seizures than wakeful ones. I don't collapse either I usually sit down but I loose about a minute of time and then I feel lethargic and I get the blues. Some people experience euphoria ( lucky). With the large amount youre having I would be agressive about getting a better handle on them because seizure cells can teach other brain cells to become seizure cells. I have to say mine have changed for the worse over the years but I would much rather control them without taking a bunch of meds. I'm on three now with no change. I'll let you know if I have any success with other options. Jackie > > > Four years ago I was diagnosed with a low grade glioma in the left > > > temporal lobe and now I'm having 20+ seizures per day on average [quoted text clipped - 81 lines] > > - Show quoted text - Hi Jackie and G, my only surgery involved removing minimal tissue from a nickle sized hole through the skull. My tumor was last measured as 8 x 5.3 x 4.7 cm with portions extending into the frontal and parietal lobes. To a limited extent I've discovered ways of focusing concentration (more like turning off the mind) and manipulating breathing and jaw position to reduce seizure severity when I feel one coming on. Last year I was put on Decadron for two weeks after my biopsy. I was seizure free for nearly 3 months afterwards that was like a slice of heaven but my doctors don't want me taking it again because of the problems long term use of steriods leads to. I've not tried drugs outside of Dilantin and Keppra. My neurologist felt adding a third drug would make it difficult to keep things in balance I agreed with him. > Hi, Did they take out the glioma or just biopsy it? If I had a small > area that they could remove without removing the entire temporal lobe [quoted text clipped - 4 lines] > topomax with complete control that is one I haven't tried. Since I get > a huge aura warning me I just started trying EFT. *** What's EFT? Is that like biofeedback? If it is, several of the stronger szr. types wouldn't be affected by that if we move from onset thru Simple Partial to Grand Mal or Complex partial stages. I had to use 2 (now) meds. to get control. One alone (Dilantin) gave erratic control, and it took 2+ years to reach a mix that worked. (Last szr. I had was 1998.) / They are meridian > points that you tap. There is a website. I read in a newsletter over > the summer where a women described doing the EFT whenever she felt a > seizure coming on and stopped it. Are you able to stop yours at all by > flicking your eyes or changing your thoughts. **** As above, I'd expect this to only work for simple partial? or milder szrs. The stronger ones, especially w. rapid onset, above wouldn't be useful. / I start to zone in on > voices or different things and my brain waves change to alpha waves > which are very slow. We have them during our sleep. I now have more [quoted text clipped - 4 lines] > about getting a better handle on them because seizure cells can teach <---- ??? > other brain cells to become seizure cells. *** Sorry, above doesn't make sense. I've never seen that referred to here in 9 years. Electrical firing and misfiring produces a seizure. There isn't a seizure cell, nor one that can teach another what to do? An electrical misfiring could start in one area of the brain then *generalize* spread to other areas --> it's usually at that point we collapse or pass out. But that's from loss of motor control or consciousness, not from some cells 'learning' anything. I agree that in some cases Strong seizures might produce damage that's longer term. But I hadn't seen any of the regulars (who are rarely here now) even describe their types of seizures (one of the 4-5 types listed on the U.S. Ep. Foundation site) as doing stronger damage while they were getting control. I *would though prefer to get as close as possible to full control, if mine were not controlled, just for safety and quality of life considerations. Some of the rapid onset types can be a hazard in the kitchen or while out in traffic (walking) if they were to start without an aura or warning. Some of my stronger ones did that, and I didn't get the aura every type I had a full Complex Partial type szr. My seizures are controlled because I found a mix (of 2 meds.) that worked for my type, and I don't expect to *ever stop taking them. The firing is controlled because the meds. control them, so I don't have the disruption or fear of 'going out' like when I was only using Dilantin, and could count on a 'Surprise Seizure' 3-4x a month. That was the sort of thing I was hoping to get BillyG toward, if the Dr. hadn't tried another pill (usually with reduction in 1 of the other 2. I also didn't have experience with the intensity of his types of seizures, so hoped others (including you) who had experience with that type of cause (as his) could help with ideas too. Cheers. G./ // I have to say mine have > changed for the worse over the years but I would much rather control > them without taking a bunch of meds. I'm on three now with no change. > I'll let you know if I have any success with other options. > Jackie- >>voices or different things and my brain waves change to alpha waves >>which are very slow. We have them during our sleep. I now have more [quoted text clipped - 12 lines] > collapse or pass out. But that's from loss of motor control or > consciousness, not from some cells 'learning' anything I Think what the OP may have been referring to was the process of the development of a Mirror Focus. In “mirror focus” development, an epileptic focus (the mirror focus) is found to develop in the hemisphere opposite to an original epileptic focus, even though there has never been an injury in that hemisphere. This can actually take years to develop, and may never happen at all if the original focus seizures are well controlled. But I am merely speculating. Pam @ ENL Some people experience euphoria > >>( lucky). With the large amount youre having I would be agressive > >>about getting a better handle on them because seizure cells can teach <---- ??? [quoted text clipped - 17 lines] > > Pam @ ENL- Hide quoted text - Is that similar to what some places call 'kindling'? where a szr. might start in one side (temporal lobe in his case), and jump to the other side too during the process? Those ones I had thought were more difficult to control in a few of the people who were active here in 1997-2000. Unfortunately we used to have about 6-8 people with szrs. in one or both of the Temporal Lobes (almost enough to start our own 'club' !!) but most haven't posted for a number of years. The full 'group' had regulars totaling about 20 for more than 3 years. One woman had a child whose focus was in Both of the T.Lobes, so they were trying various child-compatible meds. since any surgery (if it were decided severe enough) *couldn't remove parts of both the T.lobes. One or two people had partial surgeries to *1 of the T.lobes, but since that's where short-term memories and new learning goes first, both sides can't be removed as then we'd lose the redundancy and *I think, is where we store 'who we are' within. Also I *think surgery is also less an option in whichever side is the Dominant? side of the two 9not necessarily one related to left /right handedness), but I'm not a NeuroSurgeon.... :-< I found the 1 or 2 years it took tinkering with meds. to get final control frustrating. I can only imagine how frustrating it might be if the szrs. could launch from *either of the T.lobes or both sides elsewhere in the brain. (Some people who used to read this group also only 'came here' once or twice a week. Since it's been quiet for most of the year, hopefully they still come back from time to time and will still show up with experiences or ideas for BillyG. With posters in Europe, North and South America, New Zealand and Australia sometimes a possible solution that one country hadn't tried would show up from another place and give them something useful to take to the Dr. for an opinion. /G. > > Hi, Did they take out the glioma or just biopsy it? If I had a small > > area that they could remove without removing the entire temporal lobe [quoted text clipped - 68 lines] > > - Show quoted text - I'm glad no doctor ever told you about the cells teaching the other cells. It was my last neurologist, who was a D.O. who told me this. She said it was called the kindeling effect. I thought the news was very depressing. She said the medicine worked as a wall around the epicenter but with break throughs the potential gets so great it goes over the wall and starts the seizure. I have to admit I never had it explained like this. They are very concerned that they've never got my seizures fully controlled. I'm worried too because I don't know what the future holds. If they would stay like this I wouldn't consider any radical procedure like a temporal lobectomy. You know whats strange. Whenever the smaller seizures are controlled I have a grandmal seizure. This happened in the 90's. They were always in my sleep. My husband would give me a few advil when I came out of it and I was fine the next day. I had a grandmal seizure about every six months until I changed back to phenobarbital. When I was sixteen I saw my first neurologist although I had been diagnosed by my family doctor when I was 5. I didn't experience any of the things he asked me about and he didn't believe that I could be running a race and have a seizure and never lose focus and still run. I used to have them during tests but I didn't stop and I was an A student. After I left his office I was convinced I didn't have epilepsy and I told myself the next time I have a seizure a would note every sensation. So I did exactly that and I went in to my first grand mal seizure. Weird huh. Jackie > I'm glad no doctor ever told you about the cells teaching the other > cells. It was my last neurologist, who was a D.O. who told me this. > She said it was called the kindeling effect. (I don't know what a D.O. is ? ) I'm not a Neurologist, but my understanding of 'kindling' that I'd have thought a Dr. would know --> it's like when you start a campfire. You put 'kindling' (small pieces of wood or paper under the larger logs)-- light the 'kindling' and after it has heated for a while it ignites the rest of the larger logs on the fire.... In that context, 'kindling' would be the minor Electrical firings that are erratic but set the groundwork for a Larger Seizure. If the SImple Partial or early part of a seizure is not controlled or ends on its own it can progress (generalize) into a Stronger Seizure like a Complex Partial or Grand Mal. (Anyone else have a different interpretation of what Kindling means?) With that definition, you don't need the more complex circuitous descriptions she uses (below) in her analogy of where and how a seizure starts-> Electrical misfiring, Kindling, Ignition (seizure), done. If the medicine suppresses or prevents the erratic electrical firing, you don't get the kindling or the seizures... saves the confusing stuff she described below to you. / I thought the news was > very depressing. She said the medicine worked as a wall around the > epicenter but with break throughs the potential gets so great it goes > over the wall and starts the seizure. I have to admit I never had it > explained like this. *** G. Possibly for good reason as I commented above. They are very concerned that they've never got my > seizures fully controlled. **** G We had several people a few years ago who were concerned like that, but after a year or 2 of tinkering with pills and doses, they got control (I did). Some didn't but their type of szrs. were more extreme and had started when they were kids, and they had them all their lives. (I don't recall if your's started that young, or later onset? And other life changes (like puberty, etc.) can disrupt several of the pills and make control more difficult until after that has passed.) (This group has been quiet since about last Spring following a disruption by some people who didn't have szrs. They should be offline now, but many of the 'regulars' just quit posting -- or at least reading the group as often as they had. ) fyi G./ I'm worried too because I don't know what > the future holds. If they would stay like this I wouldn't consider any > radical procedure like a temporal lobectomy. You know whats strange. > Whenever the smaller seizures are controlled I have a grandmal > seizure. This happened in the 90's. They were always in my sleep. **( Many of the szr. types can occur during the night, as our guards tend to be 'down' then and some of the sleep phases might allow the electrical firings to break through, while they might not if the same ones occurred during the daytime.) / My husband would give me a few advil when I came out of it and I was fine > the next day. I had a grandmal seizure about every six months until I > changed back to phenobarbital. When I was sixteen I saw my first > neurologist although I had been diagnosed by my family doctor when I > was 5. I didn't experience any of the things he asked me about and he > didn't believe that I could be running a race and have a seizure and > never lose focus and still run. *** Sounds like he's never heard of a Simple Partial Seizure, sometimes called an Aura. Is *he the Dr. who prescribed the Pheno for you or did you see a Neuro too? Surely a Neurologist would run more tests (EEG, MRI) to see if there are electrical firings or internal damage, rather than just depend on what the patient describes, to do a diagnosis ? Depending where the szr. comes from, if they could identify *one area of the brain, that would allow them to consider other pills than Pheno or a Headache pill to target a particular seizure. That would allow you to hope for getting full control if that is possible in your type. Keep us posted if anything further develops. I think there are still people reading the group, even if they're too shy to post. / I used to have them during tests but I > didn't stop and I was an A student. After I left his office I was > convinced I didn't have epilepsy and I told myself the next time I > have a seizure I would note every sensation. So I did exactly that and > I went in to my first grand mal seizure. Weird huh. > Jackie- |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.