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Medical Forum / Diseases and Disorders / Epilepsy / November 2005Comments on my new epilepsy website please
Hi, As an epilepsy sufferer myself, I decided to produce my own site in order to provide support, information and articles on epilepsy for both fellow sufferers and their carers. I literally put the site live last night, so as you can see the amount of content on there isn't at the level I'd like to get it at, but I would welcome any comments regards the site if you'd like to give me any? The site is at http://www.fit-and-well.co.uk Thanks Donna Hi. You might want to consider an alternate title if you want to be an International accessed site. Only in the UK? is an Epileptic seizure referred to as 'a fit'. Other areas don't regard that term as a positive description. I couldn't tell from the proposed title if that was why you picked that name. (You could even add a note to that effect somewhere within the opening to the site, and refer e.g. to the various ways that Epilepsy has been referred to through history. Some cultures, I believe, referred to it as the Noble Disease? :-< as it was thought to have been produced by attempts by the Gods to contact us. ) *2) Epilepsy is not a Disease. Similar to above, but that term is used about 5x on the front page of the site. It may be *caused in some cases by an illness, but it's usually not called that now. 3) I had heard varied statistics on how many people might be touched by Epilepsy at least some time during their lives. One site had put the statistic at 1 person in 15, while the US Ep. Foundation site, I think, puts it at 1 in 30? Your site puts that at 1 in 80. A number (whatever it is) consistent with other medical readings on that, adds to credibility if someone were to go for a looksee and see that at the first part of the site. 4) I can't tell from the drop down if it is your isp or your plan in future to set the site up as a fee for service site. Since most of us here can use alternate IDs or passwords when we sign on, and access this site for **free, I don't need a new new ID and password to add to the ~8 I need in daily life between bank cards, printer ink orders, and software companies. But that's just my opinion, and you *did ask for some. G./ > Hi, > As an epilepsy ****sufferer*** myself, I decided to produce my own site in [quoted text clipped - 9 lines] > Thanks > Donna Hi, Thanks for your comments, they are appreciated. Very Briefly - 2) Point taken and text altered, its amazing how you dont notice things like that when you write them :) 3) I cant remember where I found that statistic online, but I will certainly research further and alter to make it more consistent with what I find. 4) I have no intentions, not now and not at any point in the future - to charge for access to any part of the site. Nope, not gonna happen. Not a chance. The login feature is there as standard functionality as part of the CMS employed,however a login is not required at all to see any part of the site. I hope this clarifies things and I thank you for the time you spent looking at the site. Regards Donna >Hi. You might want to consider an alternate title if you want to be an >International accessed site. Only in the UK? is an Epileptic seizure [quoted text clipped - 22 lines] >daily life between bank cards, printer ink orders, and software companies. >But that's just my opinion, and you *did ask for some. G./ > Hi. You might want to consider an alternate title if you want to be an > International accessed site. Only in the UK? is an Epileptic seizure [quoted text clipped - 10 lines] > about 5x on the front page of the site. It may be *caused in some cases by > an illness, but it's usually not called that now. Here at the University of Toronto, epilepsy is referred to as a disease in neuroscience and medical science courses as well as by neurologists in their epilepsy research program. I've heard both disease and disorder used to describe epilepsy and after examining medical term dictionaries in order to figure out which is appropriate, I've noticed that the terms are interchangeable and synonyms. >> Hi. You might want to consider an alternate title if you want to be an >> International accessed site. Only in the UK? is an Epileptic seizure [quoted text clipped - 27 lines] > figure out which is appropriate, I've noticed that the terms are > interchangeable and synonyms. I don't have access to a Medical Dictionary. My impression was that a Disease is something you can catch from me -- a Cold, Flu, or other condition? while you can't catch Epilepsy from me. That might break down to whether the dictionary considered something that's infectious only as 'a disease', but if it's not readily infectious it's not? This thread is the first time in ~4 years that I've seen Epilepsy described as a Disease, which was why I commented earlier. And I've never seen that link made on any of the newsletters I get from the Toronto Epilepsy Association, since 1993 (onset for me) either. G./ > >> Hi. You might want to consider an alternate title if you want to be an > >> International accessed site. Only in the UK? is an Epileptic seizure [quoted text clipped - 37 lines] > seen that link made on any of the newsletters I get from the Toronto > Epilepsy Association, since 1993 (onset for me) either. G./ With the dictionary definition of disease: "A pathological condition of a body part, an organ, or a system resulting from various causes, such as infection, genetic defect, or environmental stress, and characterized by an identifiable group of signs or symptoms." Doesn't epilepsy fit in here? The definition of disease pretty much covers it all - infection, genetics and environmental factors involved in an illness. If Alzheimers disease were infectious then Alzheimers patients would be under quarantine as would those with heart disease. It's clear that diseases are not necessarily transmissible and can also include conditions with a strong heritible component like asthma and arthritis (described as diseases by the American CDC). You can look up disease in Roget's Thesaurus and you'll see disorder as a synonym. I think epilepsy can generally be described as a disease whereas neurological disorder provides more description about the organ affected in that disease. > "A pathological condition of a body part, an organ, or a system resulting > from various causes, such as infection, genetic defect, or environmental > stress, and characterized by an identifiable group of signs or symptoms." My paediatrician told me when I was very young, that epilepsy was a condition, not a disease, as a disease is something you get from a bug, bacteria or virus of some kind. He said epilepsy was an unseen physical condition that you don't catch from any kind of outside source somehow, it has simply always been there but is just waiting to "come out" so to speak. I'd also like to ask Donna about her outrageous claim that the drug Topamax helps to rid sufferers of epilepsy of their migraine. Where on earth did you get this information from for god sake, and how many tests did you get to prove this? I took Topamax for years together with Tegretol Retard, but I always used to get the most awful headaches after my tonic-clonic seizures, whether I had five of them at a very short period of time, or just one in the middle of the street. The only thing that's ever gotten rid of these headaches though, is two 5mg Diazepam tablets, and a lot of sleep. Sofie  SignaturePlease visit my deviantART page: http://sofen.deviantart.com/ Hi Sofie, The article to which you are referring was printed in the Daily Mail (UK daily newspaper) on the 8th November - if you look at the bottom of the article you will see that I mentioned this and provided a link to the original article. I personally don't use Topamax - I am on a mixture of Lamotrigine and Sodium Valproate which combined, keeps my seizures at bay - but leaves me extremely fatigued during the day which means I need at least 1 (sometimes 2) sleeps in the afternoon to stop me becoming overtired. I hope this helps. Regards Donna >I'd also like to ask Donna about her outrageous claim that the drug >Topamax helps to rid sufferers of epilepsy of their migraine. Where on >earth did you get this information from for god sake, and how many tests >did you get to prove this? > Hi Sofie, > The article to which you are referring was printed in the Daily Mail [quoted text clipped - 9 lines] > Regards > Donna Hi. I wondered if you got anything with the original prescription that might help with reducing the tiring effects of the meds. (Or you could ask the Pharmacist/chemist if they have a weblink from the manufacturer). Some of them work better if taken with milk, food or juice and then get absorbed further downstream than the stomach. I don't know if that's the case with Lamotrigine or Sodium Valproate. Both the Dilantin I first used, and later the Tegretol CR and Frisium (Clobazam) said to take them as above. I found if I took my type of pills by themselves or without extra fluids, that I'd get extremely tired within an hour or 2 of taking the dose, whether in the AM or at night. There were a few people who took Lamotrigine, but I don't know if they're reading the group at the moment. You could look under the medications glossary of the US Ep. Foundation site, in the interim to see if there's any suggestions of ways to take the meds. that might not have been on any documentation you got when the prescription was first filled. The efa site is at http://efa.org , and I think you got to the Medications link, then scroll to the pill or type the name at the top and click on Find or Search (whatever the button is to right to the blank at top). This weekend is a US holiday? so you might get other comments after the weekend (appended to your original post), so keep reading in case others have used that medication. Some people only read the group 2 or 3x a week so may not reply right away. G./ Donna I am currently on Topamax and I suffer from headaches on a daily basis. I have to take medicine for the headaches just about daily. They get to the point to where I cannot hardly turn my head it hurts so bad. I was glad when the Doctor told me he was going to use Topamax because I had heard it helped with headaches but it has done nothing in my case. It is supposed to help with weight loss also but that hasn't happened either. No one has mentioned one of the worst side effects of Topamax, I have not seen it mentioned anywhere. Your doctors may have told you but mine didn't until I questioned him about it and he said "oh yeah that too!" Topamax makes any carbonated beverage taste flat. If you drink sodas, pop, cola or whatever you call them, Coca Cola, Pepsi Cola, things like that they will all taste flat. Any beverage that has carbonation in it will taste flat. But they forget to include that in the articles. SignatureI wish you all the best Tim Wise www.onepest.com www.askourpros.com "G.Ross" <gaross@rogers.com> wrote: > There were a few people who took Lamotrigine, but I don't know if > they're reading the group at the moment. I take it; it's interesting to hear people say it makes them tired, because for me it acts as an antidote to the effects of Carbatrol (=Tegretol XR), which I also take. While first taking it and adjusting the dose, when I took more than I currently do it made me kind of jumpy and gave me VERY vivid dreams, to the extent that a) it took a few minutes in the morning to make sure I was actually awake and not dreaming, and b) I spent all night dreaming and consequently felt like I hadn't slept at all. This after years of having extremely bland dreams due to the carbamazepine. I had to find the right balance of the two in order to have a reasonably normal consciousness. When I was told by my doctor to stop the lamotrigine after I got a rash (one of the possible side effects of it is a very serious and potentially lethal "rash", actually your skin sloughing off), taking only the Carbatrol for two days left me completely wiped out. Just as another note on unquestioningly taking the advice of a doctor, it took about five minutes on Google to prove that it was a completely different kind of rash, so I still take it. FWIW, this was from a doctor who had recently switched from being a GP to dermatology. Karl > "A pathological condition of a body part, an organ, or a system resulting > from various causes, such as infection, genetic defect, or environmental > stress, and characterized by an identifiable group of signs or symptoms." That definition would mean that a cut on your finger is then considered a disease the way I read it. I would never phrase Epilepsy as a disease. I agree with G. Ross. SignatureI wish you all the best Tim Wise www.onepest.com www.askourpros.com > > "A pathological condition of a body part, an organ, or a system resulting > > from various causes, such as infection, genetic defect, or environmental [quoted text clipped - 4 lines] > > I would never phrase Epilepsy as a disease. I agree with G. Ross. I also prefer neurological disorder over disease for the same reason you alluded to, but to say that epilepsy is not a disease is untrue since it fits quite well within the definition of disease and is described as such by those who study/treat it. >> "A pathological condition of a body part, an organ, or a system resulting >> from various causes, such as infection, genetic defect, or environmental [quoted text clipped - 4 lines] > > I would never phrase Epilepsy as a disease. I agree with G. Ross. I had a longer post set up last night too, but then decided to delete it. I guess it's part of the disease... :-< I listed a bunch of similar ones like your's (cut finger) up to Python's Silly walk school that the general definition above would include from a jagged fingernail, through general skin rashes up to broken bones and Organ Transplants, by the earlier definition (part of above), that is so general that it became meaningless for our needs. And besides the more and more I was replying, the more and more I started to hear the sound of the Fly and Hook hitting the water up above, like a long message thread I got into with someone about 2 years ago until he said something like "you people have to be more careful how you define your disease or xxxxx" --- hmmm, no one Here calls us "You people" , so when I asked him what type of seizure he had, he admitted (1-2 weeks in) that he didn't, in fact, have any. It was his job to tour the Health support groups and make sure the grammar and medical terms were accurate, and whether it wasted a bunch of time better spent on Support and helping others here, didn't really occur to him as being disruptive. It was more important to have the Definition correct than whether the patient lived or died--> "Dang he's gone, but at least we defined that Jam as Raspberry and not Strawberry. Next !!! " G./
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