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Medical Forum / Diseases and Disorders / Epilepsy / February 2004Top patient-rated Epilepsy treatments
Hi, I thought everyone might like to see the latest Top 10 list of patient-rated Epilepsy treatments from RemedyFind. A little background. Remedyfind is a non-commercial and unbiased site (not sponsored by any drug companies etc.) where individuals can rate the effectiveness of the treatments they have used for specific health concerns, including Epilepsy (and Fibromyalgia, Headaches, Lupus, Rheumatoid Arthritis etc.) . Obviously this Top 10 list has to be taken with a ³grain of salt², especially with the low number of ratings to date and as Epilepsy is such a complex condition. We are all different, and what works for one person won¹t necessarily work for another, but my hope is that certain trends might show themselves over time (and after hundreds or thousands of patient ratings). We¹ll have to see about that, but at least in the meantime I think it is helpful to hear other patient accounts of what has worked, or not worked, for them. Please share your opinions on what has - or hasn¹t - worked for you. You can choose from dozens of treatments to rate, from meds and surgical procedures to nutritional supplements and alternative / complimentary therapies. Or suggest something I¹ve missed. The site is free and you can be as anonymous as you would like you choose your own member name and your contact information is not shared with anyone. Here is the address of the Remedyfind Epilepsy section - http://www.remedyfind.com/hc-Epilepsy.asp All the best, Brett Hodges Founder / Editor Oh, alt.support.epilepsy is listed on this page and you can rate it for its helpfulness (it is one of the ³brand² selections) - Emotional Support: Online Discussion Groups http://www.remedyfind.com/rem.asp?ID=4622 Top patient-rated Epilepsy treatments (As of February 1, 2004. The first number is the averaged rating (0 = poorest; 10 = best). The number in parenthesis is the number of ratings the treatment has received.) Diet: Ketogenic Diet 8.3 (6) Marijuana (Cannabis Sativa / Indica) 8.2 (7) Trileptal (Oxcarbazepine) 7.7 (11) Tegretol etc. (Carbamazepine) 7.4 (20) Vagus Nerve Stimulation (VNS) 7.1 (11) Dilantin etc. (Phenytoin) 6.9 (16) Topamax (Topiramate) 6.1 (20) Lamictal (Lamotrigine) 6 (19) Depakote etc. (Divalproex / Valproic Acid) 5.5 (24) Keppra (Levetiracetam) 5.2 (20) Top patient-rated Epilepsy treatmentsPlease post in text format. not everyones setup for html. Hi, I thought everyone might like to see the latest Top 10 list of patient-rated Epilepsy treatments from RemedyFind. A little background. Remedyfind is a non-commercial and unbiased site (not sponsored by any drug companies etc.) where individuals can rate the effectiveness of the treatments they have used for specific health concerns, including Epilepsy (and Fibromyalgia, Headaches, Lupus, Rheumatoid Arthritis etc.) . Obviously this Top 10 list has to be taken with a "grain of salt", especially with the low number of ratings to date and as Epilepsy is such a complex condition. We are all different, and what works for one person won't necessarily work for another, but my hope is that certain trends might show themselves over time (and after hundreds or thousands of patient ratings). We'll have to see about that, but at least in the meantime I think it is helpful to hear other patient accounts of what has worked, or not worked, for them. Please share your opinions on what has - or hasn't - worked for you. You can choose from dozens of treatments to rate, from meds and surgical procedures to nutritional supplements and alternative / complimentary therapies. Or suggest something I've missed. The site is free and you can be as anonymous as you would like - you choose your own member name and your contact information is not shared with anyone. Here is the address of the Remedyfind Epilepsy section - http://www.remedyfind.com/hc-Epilepsy.asp All the best, Brett Hodges Founder / Editor Oh, alt.support.epilepsy is listed on this page and you can rate it for its helpfulness (it is one of the "brand" selections) - Emotional Support: Online Discussion Groups http://www.remedyfind.com/rem.asp?ID=4622 Top patient-rated Epilepsy treatments (As of February 1, 2004. The first number is the averaged rating (0 = poorest; 10 = best). The number in parenthesis is the number of ratings the treatment has received.) Diet: Ketogenic Diet 8.3 (6) Marijuana (Cannabis Sativa / Indica) 8.2 (7) Trileptal (Oxcarbazepine) 7.7 (11) Tegretol etc. (Carbamazepine) 7.4 (20) Vagus Nerve Stimulation (VNS) 7.1 (11) Dilantin etc. (Phenytoin) 6.9 (16) Topamax (Topiramate) 6.1 (20) Lamictal (Lamotrigine) 6 (19) Depakote etc. (Divalproex / Valproic Acid) 5.5 (24) Keppra (Levetiracetam) 5.2 (20) I couldn't get either Weblink to open, although my cable server has been having troubles since Sunday. (These posts came thru this AM and **didn't Sunday night, so I assumed all the parts were intact.) Our 'statistician' would need to look at the populations when the newsgroup link opens. I'm very surprised (according to survey below), that the Ketogenic diet that works predominately for Kids, gets into first place (without any nos. there of the Population **participating). A talk I saw 4-5 years ago said it worked best for kids because of the High Fat content needed to bring about Ketosis vs. User's body weight. While it worked for some adults, it certainly wasn't the norm according to this Doctor. Also, as there are multiple types of seizures from multiple areas of onset, while it might work for a Juvenile Myoclonic or ?? type of seizure, it might not for another type of seizure that might appear more often in Adults than kids. Sometimes (depending how the study is run), if it depends on a population contacting an Email address or calling a phone no. , the population who might click "next" and not reply will skew any results if that's how it were done. (I'll have to try connect to the site later, and wait to hear what one of our 'closet statisticians' has to reflect on that if he's able to read the site.) I'd also question, without data to back it up, Position no. 2.... I'd bet first on someone with a computer and a Repeat Dialer doing some voting there... I've only met One person here (in 1996) who used Marijuana for a type of seizures that she couldn't get relief from by conventional medications. But also Canada might get it approved for Prescription use sooner than some other countries.... G./ > Top patient-rated Epilepsy treatmentsPlease post in text format. not > everyones setup for html. [quoted text clipped - 10 lines] > Obviously this Top 10 list has to be taken with a "grain of salt", > especially with the low number of ratings to date and as Epilepsy is *********************************** > such a complex condition. We are all different, and what works for > one person won't necessarily work for another, but my hope is that > certain trends might show themselves over time (and after hundreds or ************************************** > thousands of patient ratings). We'll have to see about that, but at > least in the meantime I think it is helpful to hear other patient [quoted text clipped - 33 lines] > Depakote etc. (Divalproex / Valproic Acid) 5.5 (24) > Keppra (Levetiracetam) 5.2 (20) While I said I couldn't find above group (at bottome here), it loaded (finally?) in the background. After I logged off HERE, the website was in the Background window. Use of TEGRETOL SURVEY --> ONE member did a review on "Tegratol" (sic) use. Most people using it regularly know how it's spelled ?? The Survey question was Did you find TEGRATOL USEFUL? ____ Yes . Not much of a Choice there, even if I DID find it useful (and did). "Is the sky Green? __ Yes ". Unless I misread the info. in the site **8 people Total voted on the Ketogenic Diet. And THAT Rocketed it into No. 1 position. We probably need to give the database a while (but still vote if you want) to get a Reliable set of data to use for any studies. Someone could STILL (I assume) click back into the site and RE-VOTE for a Favourite CURE (Like CHOCOLATE !! ) for C.P. Seizures, and do so multiple times without any statistical method to see if the same person was voting multiple times. One of the problems with a general survey like that. G./ "gaross" <> wrote in message news: > I couldn't get either Weblink to open, although my cable server has been > having troubles since Sunday. (These posts came thru this AM and **didn't [quoted text clipped - 80 lines] > > Depakote etc. (Divalproex / Valproic Acid) 5.5 (24) > > Keppra (Levetiracetam) 5.2 (20) Hi Gaross admittedly the number of raters is so small at this time that only a few new ratings can have a big effect. The site is certainly a work in progress, but I do hope that over time, and as we add more sophisticated features that have users identify the sub-types of seizures that they have that the data will be of more usefulness. If anyone has a few minutes to share their expriences - good, bad, or ugly - it would be wonderful. Here is the page where you can choose the treatments you wish to rate - http://www.remedyfind.com/hc-Epilepsy.asp (For some reason the Epilepsy section is one of the least active on the site and I hope we can change that.) Many thanks, Brett On 2/4/04 8:05 AM, in article VK8Ub.129758$9Ce1.66243@news04.bloor.is.net.cable.rogers.com, "gaross" > While I said I couldn't find above group (at bottome here), it loaded > (finally?) in the background. [quoted text clipped - 111 lines] >>> Depakote etc. (Divalproex / Valproic Acid) 5.5 (24) >>> Keppra (Levetiracetam) 5.2 (20) > Hi Gaross admittedly the number of raters is so small at this time that > only a few new ratings can have a big effect. The site is certainly a work [quoted text clipped - 10 lines] > and I hope we can change that.) > Many thanks, Brett Hi Brett Please do yourself & everyone else a big favor and fix that webpage so that it doesn't need a horizontal scrollbar. That's a big no-no in the basics of webpage design. Bob > On 2/4/04 8:05 AM, in article > VK8Ub.129758$9Ce1.66243@news04.bloor.is.net.cable.rogers.com, "gaross" [quoted text clipped - 114 lines] > >>> Depakote etc. (Divalproex / Valproic Acid) 5.5 (24) > >>> Keppra (Levetiracetam) 5.2 (20) Hey There-- Just wondering what you guys thought about the VNS. I know it is rated as one of the top patient-rated epilepsy treatments and it has done wonders for me. Curious to find out if it has done the same with others. I got mine implanted awhile back.... Howdy sassy! Mine hasn't done diddly-squat! My VNS site is: http://www.howdydave.com/vns.html  SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Hey There-- > > Just wondering what you guys thought about the VNS. I know it is > rated as one of the top patient-rated epilepsy treatments and it has > done wonders for me. Curious to find out if it has done the same with > others. I got mine implanted awhile back.... Sassy- I have to agree with Dave, it does diddly squat for me. I am on battery #3, and first implnat was done in Oct. 1997, so in less than 7 years time I have gone through 3 battereis. In the beginning I had great results but as soon as the 1st battery died everythng went haywire. If someone was to ask me now my opinion of it, Iwould say don't do it. I finally got a combo of meds tht are truly working for me and have gone 7 weeks without a seizure ( knock on wood). Ann It works differently for everyone and thats a bummer that it stopped working for you. Sounds like you've beent hrough a lot of batteries, but I hear that is common if people have the VNS set on a high milliamps level. Did you ever talk to a Cybx rep about why it would work well and then stop after the first battery died? I'm glad you found a med cocktail that works for you. I swear, I've been through every single one and nothing really controls my seizures they way I need them to. Some of them make my life worse in addition. I guess the lesson here is to be open to trying new things until something sticks! Sassy, I talked with Cyberonics till I was blue int he face, they kept telling me that you should reutnr to normal after the battery replacement is set back to where you were. Well, Cyberoniccs still does not have a real set method for determining the battery life and mine went out when no one thought to check (only after 15 months!). SO I went a few weeks of having huge Genrealized seizures. Kind of set me back in a big way. As for the med cocktail I jsut switched docs in the fall, this new one told was a bit flusterred about allt he meds I have tried (all of them out there actualyl and some experimental ones too) and decided to get me off Gabitril (found out that Gabirtril will lower the amount of Dilantin in your system, which old doc never told me about), then got me on Trileptal and was still having some seizures, and then added on Keppra and since Christmas I have not had a seizure. THis is the longest I have gone with out one since 1994. You are right though nothing works the same for everyone, but like I said if anyone asks me about the VNS I will tell them my experiences and why it wouldn't be a good idea. Ann Sorry to hear that Cyberonics wasn't helpful. I've always had good luck with them, but like i said before, I guess everyone does have different experiences. I wish you luck though.. > Sassy, I talked with Cyberonics till I was blue int he face, they kept telling > me that you should reutnr to normal after the battery replacement is set back [quoted text clipped - 16 lines] > > Ann Ann, Do you still have the implant in or did you get it taken out? If you still have it, do you think that it's the combination of meds and the vns that is making you seizure free? Ruthie- That's a good question. I know I was still on my meds for awhile, when I got my VNS implanted a long time ago. I think the meds help you get adjusted to the device, then after awhile, you don't even need the meds. I am curious to know if it was the combination that helped her.. Howdy! THAT STATEMENT IS INCORRECT!!!! In the words of Cyberonics (the manufacturer): "The NCP System is indicated for use as an adjunctive therapy in reducing the frequency of seizures in adults and adolescents over 12 years of age with partial onset seizures, which are refractory to antiepileptic medications." ADJUNCTIVE THERAPY: that means in addition to drugs! SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > Ruthie- > [quoted text clipped - 3 lines] > meds. I am curious to know if it was the combination that helped > her.. Howdy Ruth! I have a VNS and it wasn't working. We just turned it off. Your circumstances might change (as mine did) and then have the VNS turned back on. It does no physical harm in there and leaving it there will save you about $30,000 in the event that you take it out, decide that it should be on and have to implant a new one. TO ANYBODY WHO HAS A VNS: I have a VNS information page which contains personal stories of people who have had the implant. If you would care to share your story just send it to me in an e-mail and I will add it to my site. Make sure that you edit your grammer and spelling because I add the stories EXACTLY as I get them (I just cut & paste it into my html code for your page.) http://www.howdydave.com/vns.html SignatureDave ???? "Noli illigitemi carborundum decendus" http://www.howdydave.com > > Sassy, I talked with Cyberonics till I was blue int he face, they kept telling > > me that you should reutnr to normal after the battery replacement is set back [quoted text clipped - 20 lines] > If you still have it, do you think that it's the combination of meds > and the vns that is making you seizure free? Has anyone used LAMICTAL? Any help? Tell me more. sherry@i-55.com " > > >>> Top patient-rated Epilepsy treatments > > >>> (As of February 1, 2004. The first number is the averaged rating (0 = > > >>> poorest; 10 = best). The number in parenthesis is the number of [quoted text clipped - 10 lines] > > >>> Depakote etc. (Divalproex / Valproic Acid) 5.5 (24) > > >>> Keppra (Levetiracetam) 5.2 (20) > Has anyone used LAMICTAL? Any help? Tell me more. > sherry@i-55.com **G* I haven't but others who have will reply later. I assume you picked *below up off an olde post. Note that the numbers and the Ranking of the Treatments are not **Statistically *Valid. Numbers can be made to show almost anything the bias of the 'tester' wants. ** Howdy Dave is our Resident Statistician, so he might have Other Comments later. ** Note that the Ketogenic Diet is 'Number One with a Bullet', even though only *4** people replied to the survey out of a total of almost *200? (Assuming that some people didn't double up on medications used, etc. on the list.) Then *7 people using Marijuana (I've met ONE here in 7 years), is **SECOND PLACE and beat out ***7 Medications and the Vagus Nerve Stimulator commonly used to treat seizures. Why? Because it's Better? No!-> because **7 people responded out of the 200+ and gave it Higher than a 7.5 rating out of 10.... Now if us 31 who take Trileptal and Tegretol had COMBINED our 'likes' ABOVE 9 out of 10 each, we represent 31 of the Respondents and would bump off everyone there down to people using Dilantin (below) .... Statistics are only relevant when the source is reliable and the Models do not lead to misunderstanding of what they represent or have found, from generally accepted statistical practices. I seriously doubt the survey below included the Number of surveys Sent Out, that weren't **Returned -- so we don't know what percent of the target survey this *154 people (or who resulted in the 154 results), is wrt surveys not returned. For example if 800 or more were not returned by people who were contacted but decided not to participate, the results become not statistically significant... Heck more than half the people I KNOW here are Guys who have Epilepsy, so Obviously from That Statistic, it's Guys who have Epilepsy, and the Other population isn't statistically represented ? .... :-< And MY seizures are controlled with Tegretol (no. 4 below) and one other Med. (not on the chart), so I'd rate 100% control at a **10. My statistic wasn't included in that or it'd be 7.5 now, just from one more respondent.... As a percent of general posts 'here' over past 6+ years, items listed at No. 3 to 10 Far exceed the number of posts about no. 1 or 2. There are some people able to use the Ketogenic (higher fat) diet, but many can't. And No. 2, I mentioned *1 former member above. So we're at no. 3 now that we've set aside 13 of the respondents.... ? G. > " > > >>> Top patient-rated Epilepsy treatments > > > >>> (As of February 1, 2004. The first number is the averaged rating (0 [quoted text clipped - 12 lines] > > > >>> Depakote etc. (Divalproex / Valproic Acid) 5.5 (24) > > > >>> Keppra (Levetiracetam) 5.2 (20) And Sherry (more recently) wanted input from the people 'here' who've used Lamictal. Anyone? Didn't mean to lose **her request** among that earlier post! :-< G. > Has anyone used LAMICTAL? Any help? Tell me more. > > sherry@i-55.com > Has anyone used LAMICTAL? Any help? Tell me more. G'day sherry, i've been using lamictal for about two years now, as an adjunct to tegretol, and have found it does the job. i was taking topomax but switched to lamictal when topomax nearly sent me around the bend. since i've been taking it i've found that my senses haven't been affected by it and it doesn't seem to have affected my memory. i haven't had any problem with rashes and it hasn't seemed to make any impact on the other medications i take. hope this helps. pablo
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