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Epilepsy For support and discussion about Epilepsy and Seizure Disorders. |
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08-06-2008, 11:09 AM | #11 | |||
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I to have had seizures all my45 YEARS OF Life,and the Doctors could never help me as well ,there are some ppl that will never take well to medications that is a fact,I have tryed most kinds of seizure control medications there is out there but to no help they are to me that is just me thou,no they are right do give it some time in between times when taking a new drug it takes a while for a drug to go all thru your body sometime,and inbetween times the doctor has to do the cbc smack blood work to make sure that you are not toxic to the drug he has percribed so it will all take time The best of luck to you and every one out there.
TAKE CARE ALL HAPPY TRAILS TO ALL Last edited by traciboop; 08-06-2008 at 11:16 AM. Reason: had to add on for more info |
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09-28-2008, 09:59 AM | #12 | ||
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Sorry you're having such trouble, but I have been there too as most on this board either have or will have. I think you called your doc a neuro? Seems like someone would have mentioned this already and maybe I missed it, but if he/she is a general neurologist, that is one of the main problems. Please go to a Comprehensive Epilepsy Center at a major medical center where the docs are Epileptologists who have additional training specializing in epilepsy. That s all they treat and most do a good job. It took 35 years for me to get to one, but I did not have this information that you now have. Epilepsy deserves a great deal more respect that it will ever get from a general neuro who will only play with the meds while it is your quality of life that is being affected. We too deserve good care and the same respect. The statistics are, once one med fails, there is less than a 15% chance that any meds will stop them. I am one of those people. There are other things available that do work, but your general neuro will not tell you about them because theyare outside the scope of his practice and he will have to admit he failed to strop your seizures if he has to refer. This is not about him. My docs hung on to me too, but it was my quality of life that took a real beating. You have the opportunity and knowledge now to make that be different. You have to do it as i did. Tell your primary care doc to refer you to a patient oriented Comprehensive Epilesy Center. Do not ask or mention it to the general neuro. Heill not like it but this is not about him. It is about you and your life. Tomorrow is the 10th anniversary of my surgery I had in 1998 for my epilepsy. I have not lost consciousness since, and I am now in graduate school. Good luck. Tattoo
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09-28-2008, 03:38 PM | #13 | |||
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Here's a MAP for the nearest Epilepsy Comprehensive
Center (Level 3/4) - click on the link below: LEVEL 3/4 EPILEPSY COMPREHENSIVE CENTERS - (USA ONLY) And if that is not suitable, you can also Find a Doctor: FIND A DOCTOR (Neurologist/Epileptologist) - AESNET/Epilepsy Foundation Good Luck and Hope this helps!
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Sharon . " Vujà Dé - The feeling you've never been in here before!" Daily Feedbag of Zonegran, Clonazepam, and Folic Acid |
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09-29-2008, 12:16 AM | #14 | ||
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I would not at all consider the above link to be one that might help a person find a quality Center. I put in my own zipcode and got numerous docs that I know are not epileptologists and others who are at the facility that allowed me to stay in status for over 8 hours during my VEEG!! That was Emory. There is a lot of politics involved ,and to find a good safe Center, it is necessary to talk to other,patients who have been treated by the Center you are interested in. Also, look for the Certificate on he wall saying that they completed the Fellowship in Epilepsy or Neurophysiology. That states that he/she is an epileptologist by training and not by desire only. There are lots of those too, but they do not have any more training than a general neuro does since that is what they really are. Look closely before selecting. You will find sites like this may promote only those they choose. The place that did my surgery and who did such a wonderful job, Medical College of Georgia in Augusta, was not mentioned on that site. Shame on the site. MCG is Emory's competition. Today is my 10h anniversary of my successful surgery by Dr. Joseph Smith at MCG. Some of the others on that site are actually at UCB the pharmaceutical company.Go figure. Tattoo
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10-01-2008, 02:16 PM | #15 | |||
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Quote:
Actually you can control the depth of field and perspective, however, some Neurologists and Epileptologists have elected not to be listed / registered. So not everyone is listed on there. (It could be anything that they're limited on how many patients they're taking - to not currently accepting any patients at this time to various reasons.) This is totally up to the Centers / Hospitals & Physicians, they can opt in or out. You can encourage your Doctor to become a part and register! And no - not all of them are UCB, the pharma; and I'm sorry you're seeing it that way. But you can even encourage your Hospital to move up to Level 3/4 in Neuroscience/Neurology if they are not in that position already - and if they are, and they qualify, then encourage them to be a part on the map!
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Sharon . " Vujà Dé - The feeling you've never been in here before!" Daily Feedbag of Zonegran, Clonazepam, and Folic Acid |
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10-01-2008, 04:29 PM | #16 | ||
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hi there epiphanyd,
Well to be 100% honest with you I know 2 things for a fact. Nothing is guaranteed to stop the seizures. Epilepsy is incurable! I have had seizures for 16 years now. I have been on EVERY med on the market for seizures, and NOTHING has stopped them. For the first 2 to 3 weeks I'll go seizure free, but then they start up again. Then I have also had the right temporal lobe removed. That only reduced the amount I have per month. I have a friend that had the same surgery, and she went seizure free for 9 and a half years. Then hers started up again. Back in 95 I had the VNS implanted, and that didn't do a damn thing for me for 11 years. Now I'm in the RNS research study, and that is helping me some. But it's not fantastic. In the past I read about where this man was born with seizures, and had them until he was 93. When he was 93 is when they finally came up with the new med that got his under control. You MUST always remember, NO ONE AND NOTHING IS PERFECT! The research scientist's say they are a step away from a total cure for epilepsy. But it will be technical, not by medication take care shawn33 Quote:
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