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Medical Forum / Diseases and Disorders / Epilepsy / April 2004The News From My Neurologist
I went to see my neurologist Wednesday. I found out my 48-hr EEG I had run in December turned out to be very abnormal and he was freaked at hearing about what happened in January. He told me that he is beginning to believe that medication may not be able to control my seizures any more. Though at our next appointment (in May) he is going to try me on one more new medicine (Tegretol?), he says that he truly believes the only way I will ever get full control over all of my seizures is to get a VNS, which I am sure most of you know what is. If not, say so and I will try to explain it like he did. Between now and then, he wants me to go through some of the tests I have already done. He says he would like to have them done since they raised my meds in the hospital without notifying him and he would like to see what the increased dosage of them has had one me affect was one me, since I have not been much better. I will be running a 48 hr EEG and a Baseline EEG 4/26-2/29. I have to have another Vestibulator Test (he says my balance is still way off) on 5/7. The follow-up appointment is on 5/12. Has anyone here been on Tegretol and know of any potential side effects or if it works well? Likewise, anyone had a VNS and know what it is like? Also, my memory is gone and I can not remember what my neurologist said VNS stands for. Can anyone help me with the name? I am grateful for any help that is given. > I went to see my neurologist Wednesday. I found out my 48-hr EEG I had > run in December turned out to be very abnormal and he was freaked at [quoted text clipped - 20 lines] > neurologist said VNS stands for. Can anyone help me with the name? I > am grateful for any help that is given. I'll post a longer note later today if I think of something new. If you have any older posts that show Dave Naess' website (used to post as Howdy Dave), he has an extensive website on the VNS. Otherwise I can look up the address in the morning on my bookmarks. I assume you have Complex Partial? Seizures, as I think that's what Tegretol is mainly used for. I couldn't get control with Dilantin in 1993/4, so started up on AM and Night time doses of Tegretol CR (Controlled Release). Each time I had a seizure we adjusted the AM or Night dose up over about 2+ years. Then a newer mid. was added (Frisium = Clobazam) that had just been approved in Canada as add-on medicine, and the Night dose slowly removed. With a couple of adjustment after that, the last 2 seizures I had were Dec. 1997 and June 1998. (I had been told I might hope for 2-3 seizure per month as a target, based on EEGs, MRIs etc.) Tegretol has a page under the http://efa.org website. In the UK the time released is called either Tegretol XR or Tegretol Retard. I think the XR is a plastic capsule with powder, while my CR type are solid tablets that can be snapped in 2 to make half doses as the dose is adjusted up or down -- depending on body weight, metabolism, etc. *Alcohol can interfere with Tegretol in some people, and one of the acids in Grapefruit Juice can also conflict with it. Avoid those 2 and that reduces a lot of possible side effects. Whatever dose they prescribe, take it with Milk, Juice or Food to ease digestion. I didn't have any problems with it except for a couple of 'kidney pains' at one point as a dose was increased. I *think there's an advisory on it (the efa site should list) if you plan to have kids... I think it's one of the pills that they Might reduce or replace to prevent complications or withdrawal effects on the Child at Childbirth. Tegretol can be used at Lower doses (like I use now) in combination with several other anti ep drugs. Although I've had excellent control for Right Temporal Lobe seizures with the Mix above, there are Other AEDs that can also be used with it, so that a Lower dose of the Tegretol can be combined with the 2nd tablet and get a Better effect than either pill alone. If I think of more stuff , or if you have questions about that, I can answer them tomorrow (today!). I can also look up Howdy Dave's website, if he doesn't post or Bob isn't around. (A number of us have it on bookmarks, like the efa site above, since they're handy to have for reference.) G.R. (IF you're having **more than One Seizure Type, if you list the names here, others might have experience with some of them too and can give you more input or ideas on what worked for them.) >I assume you have Complex Partial? >Seizures, as I think that's what Tegretol is >mainly used for. I have petit mals/absense seizures, grand mals, and I think the name for the last is simple partials. All are infrequent and I haven't really found any triggers for them. The way my neurologist talks, it is my last line of defense before I have to get the VNS. He seems to think that Tegretol will have a slim chance of working in me, so I doubt he will mess with the dosages too much. > I went to see my neurologist Wednesday. I found out my 48-hr EEG I had > run in December turned out to be very abnormal and he was freaked at [quoted text clipped - 17 lines] > Has anyone here been on Tegretol and know of any potential side effects > or if it works well? Yeah, I was on it a short time and it worked absolutely great. It controlled the seizures plus it worked like an antidepressant on me, so I was a happy camper. I did have an allergic reaction to it (huge, huge rash) and was taken off it. Shucks. I liked that medication. > Likewise, anyone had a VNS and know what it is > like? Also, my memory is gone and I can not remember what my > neurologist said VNS stands for. Vagus Nerve Stimulation or Vagal Nerve Stimulation. Vagal means 'pertaining to the vagus nerve' in medical terminology. Barb > Can anyone help me with the name? I > am grateful for any help that is given. > > Has anyone here been on Tegretol and know of any potential side effects > > or if it works well? [quoted text clipped - 3 lines] > was a happy camper. I did have an allergic reaction to it (huge, huge rash) > and was taken off it. Shucks. I liked that medication. But it wasn't worth the reaction? Wasn't there anything to control the reaction? It seems a shame that you should have to give up something so good. Mary > > > Has anyone here been on Tegretol and know of any potential side effects > > > or if it works well? [quoted text clipped - 6 lines] > > But it wasn't worth the reaction? Well, the reaction was pretty extensive. Parts of my body looked like second degree burns. The only good part was knowing that there was something, some medication, that did work. That was the very first medicine I took for epilepsy. > Wasn't there anything to control the reaction? I don't know. The rash didn't itch or burn. When I saw the doctor he thought it could be scarlet fever or a drug reaction. I think I was already taking anti-histamines at the time, which did nothing. > It seems a shame that you should have to give up something so good. I agree. Barb > Mary > > > Has anyone here been on Tegretol and know of any potential side effects > > > or if it works well? [quoted text clipped - 10 lines] > It seems a shame that you should have to give up something so good. > Mary Like Barb said, once someone has a reaction to it, it's like all your skin is covered with either Burns or a large Rash. It's some kind of allergy type reaction and you have to get off it fairly quick (days vs. weeks). I've been really careful to try take my scheduled doses as close to 12 hours apart + or - one hour, and with food or juice like I advertised, so that it gets absorbed smoothly. It was really good as a Monotherapy, and when it stopped working fully, rather than up the dose further than 2x400mg per day, my Neuro removed the night dose (400) and added the Frisium (Clobazam) that had just been approved in Canada as adjunctive therapy. Between about 1995 and 1997, as I had 4-5 seizures, we adjusted the Frisium up slightly each time. Last *2 szrs. I had were Dec.97, June 98. (My Neuro had suggested in 1993-4 that we might have to settle for 2-3 szrs. per *month... ) I'll settle for none. I get some auras several times a year, but no full szrs. any longer. G.R. I have been on Tegretol for almost 2 years. It has worked fairly well, at least, I have not had a grand mal since starting it. But I have had several complex partials, as many as 2 or 3 a month at one point. The doctor wants to increase my dose, but I have refused for the time being, because it slows down my brain. It takes me longer to grasp concepts and work out problems. I feel like my IQ has dropped at least 20 points. And my memory has gotten a lot worse. But my doctors will not confirm that these things are caused by the drugs rather than the seizures themselves. The only confirmed side effects I've had are headaches and fatigue - but these are nothing compared to the headaches and fatigue I get recovering from a seizure! > I went to see my neurologist Wednesday. I found out my 48-hr EEG I had > run in December turned out to be very abnormal and he was freaked at [quoted text clipped - 20 lines] > neurologist said VNS stands for. Can anyone help me with the name? I > am grateful for any help that is given. You might have seen some notes earlier, and I just posted one above this on this thread, about my Dr. removing my Tegretol night dose (200mg) Slowly, and replacing it with Frisium (Clobazam), rather than going above total 400mg per day of the Tegretol. My seizures were Complex Partial that we were trying to control, but I wondered if the Frisium with Tegretol might allow some reducing in your Tegretol CR(?) but still keep szr. control for Grand Mals. (I don't have experience with the latter type, only Complex Partials.) By taking the Tegretol and Frisium in the Morning and just the Frisium at bedtime, I seem to be less 'punchy' during the Day than I once was, and I sleep more soundly most nights as well. (I still get some 'brain fog' if a Rain or Snow storm (low air pressure zone) is moving in, but I was getting those before on Dilantin, or Tegretol CR alone. And while I sometimes had Extreme inside headaches too, I haven't had those since the 1998 [last] seizure. ) G.R. > I have been on Tegretol for almost 2 years. It has worked fairly well, at > least, I have not had a grand mal since starting it. But I have had several [quoted text clipped - 32 lines] > > neurologist said VNS stands for. Can anyone help me with the name? I > > am grateful for any help that is given. Hi Dawn, HowdyDave ©¿©¬ has info. on his website about the VNS (vagus nerve stimulator). http://www.howdydave.com/vns.html Take care, Julie > I went to see my neurologist Wednesday. I found out my 48-hr EEG I had > run in December turned out to be very abnormal and he was freaked at [quoted text clipped - 20 lines] > neurologist said VNS stands for. Can anyone help me with the name? I > am grateful for any help that is given. > Hi Dawn, HowdyDave ©¿©¬ has info. on his website about the VNS (vagus nerve > stimulator). > http://www.howdydave.com/vns.html > > Take care, > Julie That link has been dead for a while, Julie. I can't quite remember the whole story, but Dave was pretty unhappy with the company that makes the VNS and I guess he took the website down as a consequence. Perhaps he will say something about that. Bob > > Hi Dawn, HowdyDave ???? has info. on his website about the VNS (vagus nerve > > stimulator). > > http://www.howdydave.com/vns.html > > > > Take care, > > Julie > That link has been dead for a while, Julie. I can't quite remember the whole > story, but Dave was pretty unhappy with the company that makes the VNS and I > guess he took the website down as a consequence. Perhaps he will say something > about that. > > Bob That link appears to be currently active... -- DR > > > Hi Dawn, HowdyDave ©¿©¬ has info. on his website about the VNS (vagus nerve > > > stimulator). [quoted text clipped - 13 lines] > -- > DR I see now that it does work if one is using the Microsoft Internet Explorer browser. Looks like Dave made some changes on the website and it stopped working in the old Netscape browser I use. It also doesn't work in Mozilla. That's not really good news when a website only works in MSIE. I see now that it's the discontinuation of that Message Board that I was trying to remember. Bob > > That link appears to be currently active... > > -- > > DR > I see now that it does work if one is using the Microsoft Internet Explorer browser. Looks > like Dave made some changes on the website and it stopped working in the old Netscape browser > I use. It also doesn't work in Mozilla. That's not really good news when a website only works > in MSIE. [...] I used to hate Netscape when designing web pages - it limited really basic options, and made ordinary things look wrong. Totally annoying...;-) -- DR > > > That link appears to be currently active... > > > -- [quoted text clipped - 11 lines] > -- > DR All versions of Netscape are now obsolete and no longer supported, especially the NS browser I normally use although I usually get some warning or clue & switch to Mozilla as needs be. Mozilla is the only browser that follows the standards and a website that works only in MSIE and not in Mozilla is not standards compliant. Bob > > I used to hate Netscape when designing web pages - it limited > > really basic options, and made ordinary things look wrong. > > Totally annoying...;-) > All versions of Netscape are now obsolete and no longer supported, especially the NS browser I > normally use although I usually get some warning or clue & switch to Mozilla as needs be. Mozilla > is the only browser that follows the standards and a website that works only in MSIE and not in > Mozilla is not standards compliant. [too bad we can't take this to private email, but...] I agree, and I used to use "Opera" for this purpose, but these "strict" browsers limit even pretty ordinary enhancements that the nearly-ubiquitous MSIE makes easy... -- DR > > > I used to hate Netscape when designing web pages - it limited > > > really basic options, and made ordinary things look wrong. [quoted text clipped - 11 lines] > -- > DR MSIE tolerates a lot of non-standards design. Try http://validator.w3.org/ and give it http://www.howdydave.com/vns.html and then give it<g> http://www.ferrario.com/ruether/default.htm Bob DR, I started with Netscape, so I tend to use what I liked in the beginning (of time ;-). I just get annoyed with Microsoft. But I do agree that most people are now using I.E. and we need to design for all browsers. Julie > > > That link appears to be currently active... > > > -- [quoted text clipped - 11 lines] > -- > DR I've been writing Microsoft's 'help source' a few times about updates I get notices on, then an Error that says 'you can't update that, you appear to be using stolen software...' Since they've updated this (XP) for more than a year, I wrote to ask why Now I appear 'stolen' or was that new? (They just sent me an 800 no. to use tomorrow, to get my registration/ passport re-enabled. It likely got mangled during the Eastern U.S. / Canada power crash 3-4 months ago --I had just hit Transmit when all the Power went out... ) They might have someone supportive there who could explain if there's a work-around or fix that can be picked up to reset your stuff. I hadn't done programming on Netscape, but a bunch of the 'geek stuff' and spam trapping was a lot easier on Netscape 4.51? than the stuff I have on Int.Explorer. I've just gone to Blanket Discards on some of the trolls who follow posts here. If it's a country I don't write I just deny the Whole Country. May not be as useful for someone with a Help Website, but it cut my junk by 60+ %. G. > DR, I started with Netscape, so I tend to use what I liked in the beginning (of time ;-). I just > get annoyed with Microsoft. But I do agree that most people are now using I.E. and we need to [quoted text clipped - 16 lines] > > -- > > DR > I've been writing Microsoft's 'help source' a few times about updates I > get notices on, then an Error that says 'you can't update that, you appear > to be using stolen software...' [...] This may not be what you meant, but NEVER take seriously, respond to, or use links provided in "Microsoft" emails - these are ALL bogus, and often viruses! Go only to the MS sites directly to find updates... -- DR > > I've been writing Microsoft's 'help source' a few times about updates I > > get notices on, then an Error that says 'you can't update that, you appear [quoted text clipped - 5 lines] > are ALL bogus, and often viruses! Go only to the MS sites > directly to find updates... I agree about that but I don't think it's what the poster was referring to. I could be wrong of course, it has been known :-) Mary > -- > DR > > > I've been writing Microsoft's 'help source' a few times about updates I > > > get notices on, then an Error that says 'you can't update that, you appear > > > to be using stolen software...' > > [...] [quoted text clipped - 9 lines] > > -- > > DR Mary was Correct. **I initiated the Contact with Microsoft, it wasn't a Blind Mailing or other Junk that purported to be **from Redmond. I also know how to open the headers to see if 'Bill' was really writing me from Brazil or the U.S. > DR, I started with Netscape, so I tend to use what I liked in the beginning (of time ;-). I just > get annoyed with Microsoft. But I do agree that most people are now using I.E. and we need to > design for all browsers. > Julie A friend has such total hate of MS that he refused to ever use MSIE - and therefore could not view web sites with normal text size or any enhancements (some pretty basic...), or ones that used colors outside the 8-bit series with text overlayed. In other words, to be "politically correct", he gave up the ability to correctly "receive" many web sites. His choice, but.....;-) In the "bad old days" when I was doing my designing and had to allow for Netscape's quirks, I was limited to 8-bit color and the simplest frame-edges, and a very limited range of text size and fonts to accommodate Netscape. With sites that had upwards of 50 pages that needed to be easily identifiable and differentiated, that was a challenge! ;-) It was still disheartening to look at these sites on Mac or Netscape, though, since these still managed to mangle my best efforts...;-) Grrrr.....! ;-) -- DR > DR, I started with Netscape, so I tend to use what I liked in the beginning (of time ;-). I just > get annoyed with Microsoft. But I do agree that most people are now using I.E. and we need to > design for all browsers. I started with Microsoft and like it - I've never had any reason, in several years and with a variety of machines, to complain about it. As you say, most people are using IE so it must be successful. Mary Hi Bob, I noticed that the website wasn't working in the old Netscape I use with this newsgroup. So I checked it out in I.E. and found the link. Take care, Julie > > > > Hi Dawn, HowdyDave ©¿©¬ has info. on his website about the VNS (vagus nerve > > > > stimulator). [quoted text clipped - 22 lines] > > Bob > Hi Bob, I noticed that the website wasn't working in the old Netscape I use with this newsgroup. > So I checked it out in I.E. and found the link. > > Take care, > Julie Hi Julie That's *exactly* what happened to me! Our old standby, NS, gets more & more dated as time goes by. Bob > > > > > Hi Dawn, HowdyDave ©¿©¬ has info. on his website about the VNS (vagus nerve > > > > > stimulator). [quoted text clipped - 22 lines] > > > > Bob > > Hi Bob, I noticed that the website wasn't working in the old Netscape I use with this newsgroup. > > So I checked it out in I.E. and found the link. > > > > Take care, > > Julie > Hi Julie > > That's *exactly* what happened to me! Our old standby, NS, gets more & more dated as time goes by. > > Bob It always was, even when "current"...;-) It caused me more grief than it was worth, trying to make pages that were interesting and readable, yet compatible with Netscape. I came to loath it! -- DR > > > Hi Bob, I noticed that the website wasn't working in the old Netscape I use with this newsgroup. > > > So I checked it out in I.E. and found the link. [quoted text clipped - 11 lines] > -- > DR When I first went onto Windows 95, the first thing I was treated to was the Lightning, and Flashing In-your-face Commercials and Light shows that gave me the first Auras I'd had in more than *2 years. I emailed Microsoft Help Desk and offered to Pay them ( **!!!) to get this Junk out of my Face, and explained the Health reasons I needed it off. The 'Help' (at that time) said the Commercials and Light show was what made the software 'free to users' and they couldn't (wouldn't) disable the Lightshow. I replied once and suggested they would lost 6% of their market (1 in 15?) due to People with Seizures not being able to tolerate the Flashing. When I called my Cable Provider to have them Remove the Network Connection, their Helpdesk guided me through Loading Netscape 4.51 which I used from 1997 (Oct.) to 2002? when Norton Antivirus pulled support for Windows 95 since so many new Virii and Worms could bypass the older software. I don't use any of the Programmer's things on either Netscape or Explorer that the differences in detail would matter. Although I've struck a new (supportive) relationship with Help Desks at Redmond (M.soft), there are still things I get on XP that I could get around on Netscape. (E.G. there were things in Inmail I could see I didn't want, but needed to *open in order to Delete them and Empty Trash. On Netscape I could just Click the Unread (dot) by a message title, and it changed to an (already read) dot so when I exit Mailbox, 'already read' mail was Discarded. I now also have *2 things listed as 'unread' on the summary of inbox, but there's nothing in the Inbox (3 items) that are, in fact, Unread. G./ Hi Dawn > I went to see my neurologist Wednesday. I found out my 48-hr EEG I had > run in December turned out to be very abnormal and he was freaked at > hearing about what happened in January. He told me that he is beginning > to believe that medication may not be able to control my seizures any > more. It sounds a little quick for him to be saying something like that. You've only tried Dilantin & Keppra so far, haven't you? There's a lot of trial & error in finding the right drugs, so there's no surprise there and you weren't even getting a theraputic dose of Dilantin before they spotted a problem at the hospital. > Though at our next appointment (in May) he is going to try me on > one more new medicine (Tegretol?), That's an old standby that a lot of people have used with good results! > he says that he truly believes the > only way I will ever get full control over all of my seizures is to get > a VNS, which I am sure most of you know what is. If not, say so and I > will try to explain it like he did. He hasn't tried a lot of other drugs yet. > Between now and then, he wants me to go through some of the tests I have > already done. He says he would like to have them done since they raised [quoted text clipped - 7 lines] > Has anyone here been on Tegretol and know of any potential side effects > or if it works well? Some here are using it with good results. See http://www.rxlist.com/ for some side effects, but just because they're listed there doesn't mean you'll get them. > Likewise, anyone had a VNS and know what it is > like? Also, my memory is gone and I can not remember what my > neurologist said VNS stands for. Can anyone help me with the name? I > am grateful for any help that is given. This website will explain it. http://www.epilepsysandiego.org/vagus.htm Bob >It sounds a little quick for him to be saying >something like that. You've only tried Dilantin [quoted text clipped - 3 lines] >a theraputic dose of Dilantin before they >spotted a problem at the hospital. At first, I was on 300 mg of Dilantin taken about an hour before bedtime. It worked somewhat, but did still have grand mals. Then, it was split to 150 morning and 150 night. I was having major problems with the fatique from the 50 mg tablets (only could get in chewable). I think when the Keppra was added, he split the Dilantin to 200mg morning + 500 Keppra and 100mg Dilantin+500 Keppra at night. Sometime in between changing around the doses of Dilantin, he did do at least one check on my dilantin and it was at a therapeutic level (for some reason I am thinking there was two checks). After the last switch and add on, I had six seizures in one day and when I was checked at the hospital, my dilantin level was either a 2.3 or a 3.2. Their neurologist decided to raise my Dilantin to 600 mg (300 morning and 300 evening) and raised Keppra to 1500 (750 morning and 750 night). (This raising, when I told my neurologist, kind of freaked him out) I had to discontinue the additional 500mg of Keppra from side effects of extreme dizziness and blurriness. When I was released from the hospital, the dilantin level was at a 15.2. Between then and this last Wednesday, I have been having the absence seizures, spells of dizziness, and the possible development of simple partials. Since I have also been having a lot of fatique and memory loss that he feels is from the Dilantin, he doesn't want to raise the Dilantin and the Keppra has been proven that it can't be raised. Plus a 48-hr EEG and a baseline EEG ran in December is still showing a lot of abnormalities and lots of seizure activities. He is wanting to run these again before making a decision, but I think he already has expects I am not any better. He has also noticed that my balance is way off when I walk and when I stand still (I tend to sway). He mentioned trying one more medicine (Tegretol), but he said flat out it probably will not work. He told me, as soon as he looked at the results of the December tests (he had them faxed during the visit), that he really thinks my only real chance at controlling my seizures is the VNS device. Honestly, I really feel deep down that he is correct. I am all for it if/when he decides to do the VNS. I was scared when he first told me, but I have had a few days to get my head together. > Since I have also been having a lot of fatique Do you mean fatigue? Mary
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