 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Epilepsy / April 2006Loss of memorey and other things because of epilepsy??? Anyone else have these problems?
I have had my seizure disorder since I was 12 or 13 and I am now 43. I have been on a lot of different meds but I have found with time that my memory is not what it used to be. Actually it sucks! I also play a lot of chess and I enjoyed playing 1 minute chess but I can't get even close to the rating I had say 10 years ago. Talking to people that requires me to bring up actors or books or movies from the past is like "yea right". I try to avoid those conversations or nod a lot. Now to talk to me you would never know, but I know. I know that going back to school would be extremely difficult. I take now and have for probably 15 to 20 years, Valproic Acid/Depakote 2500mg daily and 800 mg of carbamazepine/Tegretol. My hands tremble which sucks as I love coffee too.:-) This also makes me feel quite, well crazy. Like somebody who didn't get enough booze today. No I don't drink. You go to a neurologist and they downplay it. Does anyone else out there have similar issues. Mine are probably small but... I assume they are from the meds, I would hate to think it is permanent, the memory thing anyway. Mike >I have had my seizure disorder since I was 12 or 13 and I am now 43. I have >been on a lot of different meds but I have found with time that my memory [quoted text clipped - 14 lines] > the memory thing anyway. > Mike Did they give you a name for the type of seizures you had? At max. for Complex Partials (formerly Temporal Lobe) Seizures, I was at 2x400mg per day of Tegretol, but without the Depakote you are using. Later we added a newer med. and cut Tegretol to 1x400mg per day. The memory stuff I had were because the damage I had was in my Right Temporal Lobe, that's why I wondered if some of your seizures came from there (left or right side T.Lobe). Those affect short term memory and new learning, so can affect learning new things unless I once took copious notes. Mine is not nearly as extreme as it was 10 years ago, and I only have to make notes on some short term things like instructions on a screen before software goes off to another page that assumes I remember what I had answered or read on the page before (during installing of software, etc.). Mine though, I haven't Lost anything I had. So I can still play chess or remember Science or Math stuff I had learned at school and University. That's why I was interested in which area might affect you losing? older memory stuff you had learned, like examples you listed above. Also with my type of Memory thing, I have more trouble with Verbal instructions or example above, but far *less trouble if I'm able to read (or reread) it from a Manual or a Novel I'm reading. That's why I wondered if you had trouble there too? G./ I have generalized Tonic Clonic and Absence Seizures, 3 per second spike and wave. More or less. I would have to say all types of my memory have been affected. Like a dullness or a morning fog that keeps you from recalling, short term or long term. A typical situation I could find myself in would be a group of people talking about a movie that I had seen, but one of the leading actors was also in another movie I liked and as I say this I realize uh oh. Then I have to say I don't remember what there name is or the movie they were in, make a quick joke like brain fart and then, well wish I could remember. This has happened so often I avoid groups of people and have now tended to be reclusive and slightly agoraphobic of large groups where I am expected to socialize. I would have to say I have problems with verbal also but now I get anxious with the verbal because if I don't get it, I look stupid, which I feel I often do. Taking down a phone number at work usually requires a second tell. I usually say could you please repeat the last 4 numbers. So comprehension is also affected. I can do my job and do it well however I would like to be what I was or can be. > > news:39adncGqjcdTh_HeRVn-iQ@comcast.com... >>I have had my seizure disorder since I was 12 or 13 and I am now 43. I [quoted text clipped - 36 lines] > (or reread) it from a Manual or a Novel I'm reading. That's why I > wondered if you had trouble there too? G./ Hello, I'm an epileptologist, so I don't have the problem you describe but I know a lot of people who have it. There are different reasons for cognitive problems in epilepsy... 1. If someone has a lesion in his brain (like M.Ross) this can lead to memory problems and to epilepsy. But this should not be your problem because in Absence-Epilepsy with 3/s spike-wave you won't have an brain damage. 2. Seizures lead to memory problems: If you have an absence, you don't hear what happens - so this is obvious. But sometimes you might have 3/s spike-wave and your brain can not follow what heppens, but it is not a real seizure - so it's just a very short time - but for the memory it can be a big problem. 3. The drugs can produce memory problems: The very old ones (e.g. barbiturates) do it regularly, also carbamazepine and valproate do this (by the way: carbamazepine isn't a good drug for your syndrome - it will lower the valproate level and it doesn't help against absence seizures and primarily generalized tonic-clonic seizures - do you have a good neurologist who knows about epilepsy?). There are modern drugs like lamotrigine or levetiracetam (these would be a good option for you maybe) and gabapentin (this is not useful in absence seizures), who have much less cognitive side effects. But one has to test if they can control your epileosy also. So maybe you should try to find an experienced epileptologist and ask for help. 4. There are other reasons like depressions (many people with epilepsy have a depression and this make memory disturbances also), social-factors and more.. So I hope, I was a little helpful... The epileptologist I recently went to wanted to switch me to Lamictal and take me off of tegretol. While this sounds great in principal it is a huge risk. I have 2 small kids and am divorced so knowing that I won't have a Grand mal is important. As my ex will and has used my epilepsy against me in court. I think rather than going the route of lamictal, which I may do at some time I would like to try the VNS. If I could lower my meds or get off one all together it may make a huge difference. > Hello, I'm an epileptologist, so I don't have the problem you describe > but I know a lot of people who have it. There are different reasons for [quoted text clipped - 25 lines] > > So I hope, I was a little helpful... But the VNS doesn't help very much - and for absence epilepsy there is not much evidence... And Tegretol doesn't help in your syndrome - so the risk is not so big... Can you please elaborate on your statement: "But the VNS doesn't help very much....." Darryl. > But the VNS doesn't help very much - and for absence epilepsy there > is > not much evidence... > And Tegretol doesn't help in your syndrome - so the risk is not so > big... I don't think you quite understand my position. What if someone offered you a new drug but said "However if you do have a grand mal seizure you will be dragged through court so that you won't see your kids without supervised visitation." I have an ex in that league. She already had gone to my PA to get her to write a letter of her concern of me having the kids for visitation. The fool wrote the letter for her and it went into court and the judge allowed it even though he knew she was going to be in deep trouble and had broken a law as she gave her recent medical info without my consent. I didn't sue but did get some cash for it. I thought the VNS works well for generalized seizures. Do you know of any recent research I could read up on pertaining to the VNS. I work in an EEG/Sleep lab so I have quite a few resources, but we don't do long term monitoring or anything other than basic EEGs. Thank you for your help!!!! > But the VNS doesn't help very much - and for absence epilepsy there is > not much evidence... > And Tegretol doesn't help in your syndrome - so the risk is not so > big... I inserted comments of my own experience/ understanding of mine at **s. I was told at first in 1993, mine were Tonic Clonic, then Complex Partial based on tests and MRIs. G. > Hello, I'm an epileptologist, so I don't have the problem you describe > but I know a lot of people who have it. There are different reasons for [quoted text clipped - 5 lines] > 2. Seizures lead to memory problems: If you have an absence, you don't > hear what happens - so this is obvious. ** I had memory problems from Encephalitis in 1979 to past 1993 when my seizures started. That's where the Right Temporal Lobe damage came from that affected my short term memory throughout the 1980s. From 1993, after 2 years on Dilantin, the Tegretol CR then Tegretol and Frisium (Clobazam) greatly improved my short term memory function. Since my Memory was so bad through start of seizures, I didn't notice any *damage from them (about 12 Complex Partials in all, over 4 years, until I was fully controlled). I also had many Absences as I got closer to full control with above 2 meds. mostly when we were Near to final control. Those stopped 1998 too. G./ But sometimes you might have > 3/s spike-wave and your brain can not follow what heppens, but it is > not a real seizure - so it's just a very short time - but for the > memory it can be a big problem. > 3. The drugs can produce memory problems: The very old ones (e.g. > barbiturates) do it regularly, also carbamazepine and valproate do this **************************************** > (by the way: carbamazepine isn't a good drug for your syndrome - it > will lower the valproate level and it doesn't help against absence > seizures and primarily generalized tonic-clonic seizures - do you have ******************************************* > a good neurologist who knows about epilepsy?). There are modern drugs *****G.** In my case, yes I do, and my szrs. are controlled. I didn't know though from his initial post if they had established if there was other internal damage until the tests were finished, that might show if some of his problems also came from the Temporal Lobes (like mine), or from the info. he provided above, if his was a different area of the brain than mine. G./ ****** > like lamotrigine or levetiracetam (these would be a good option for you > maybe) and gabapentin (this is not useful in absence seizures), who [quoted text clipped - 5 lines] > have a depression and this make memory disturbances also), > social-factors and more. *** But if his were as severe as mine were at first, it's almost a chicken and egg thing, unless he has tests to tell if one caused the other. If my Memory is messed up so I need notes to do simple things like Shopping, finding my way home, or functioning in Social Settings, those can produce depression without it needing to be Organic from the seizures? I* had that for so long before I was using any Anti Ep Drugs, I'd almost have had trouble noticing if Tegretol had caused some of them. In my case the improvement in seizure control had quite the Opposite effect, from boost in confidence, control of my szrs. and the lack of 'brain fog', my memory started then to improve. G./ > So I hope, I was a little helpful... To the topic VNS: It can help, of course. But unlike operations (which can not be made in generalized epilepsies but in many focal epielpsies) where you have seizure freedom rates of up to 80%, the benefit of a VNS is in general not better than that of a new drug: maybe 5% seizure freedom. Seizure reduction of course more, but that doesn't help much... > To the topic VNS: It can help, of course. But unlike operations (which > can not be made in generalized epilepsies but in many focal epielpsies) > where you have seizure freedom rates of up to 80%, the benefit of a VNS > is in general not better than that of a new drug: maybe 5% seizure > freedom. Seizure reduction of course more, but that doesn't help much... Thanks for posting above. There are only about 3? people around the group who have experiences with the VNS (counting you now), and several people reading or who used to read had asked about those things. Any information and experiences like above help all those people to better understand if that might help their type or if it is an Operation that has a low chance of helping. Your experiences are Useful for them to make those kinds of decisions. Thanks again, Gordon./ Hi yes I have had major problems with memory expesially after a seizure. Recentley I have had a temporal lobe seizure and have virturally forgoton the major events of the last six months including my mothers death. It slowly comes back but i feel a deja vu feeling for about a week and seem to relive emotional feelings from 20 - 35 years ago, I am currently 39. If this sounds familar pls reply. Mike > Hi yes I have had major problems with memory expesially after a > seizure. Recentley I have had a temporal lobe seizure and have > virturally forgoton the major events of the last six months including > my mothers death. It slowly comes back but i feel a deja vu feeling > for about a week and seem to relive emotional feelings from 20 - 35 > years ago, I am currently 39. If this sounds familar pls reply. That sounds like exactly what I went through from my early 20s until I was 40. Although I thought it was a result of both seizures and the medication I was taking at the time (DOPE-A-MAX ... uh, I mean TOPAMAX) My way of handling it was to be sure to write anything down on paper anything I thought was important to remember. Many people thought I was a detail freak but it got the job done. It is hard to keep your long-term memory when your short-term memory is being dumped on a regular basis. It is also hard to remember what you have forgotten. Then with those feeling deja-vu, you don't know what to believe or not. What you now have is memory that is so flaky that you can't rely on it. But you can't live without it either. Another feeling I had was that it was a future dream I was "reliving". Was I looking into the future? > Mike  SignatureDave Keays
|
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.