New Here....... - Epilepsy Message Board

Lonelysun · 04-16-2005, 11:21 AM

Hi everyone

new , was just dxs in Feb 2005, so everything is new to me......I ve been passing out for the last 3 years always just for few seconds and then dxs me with MS

In the last few months I have been having seizures that last over a hour and Im black and blue all over and extremely tired.......I take 300 mg of dilatin a day so Im hoping that will stop the seizures......The only problem is that its very hard on my liver and even more so because of the shot I take for the MS......This might be a silly question but important to me because I love doing it.......Dose any one still bike........with the Ms my legs tire fast but Im nervous about using my bike....planned to get helmet and protective gear....and I only use my bike to go over to the store......not for long trips....sorry this is so long...take care Susan

Eilidh1 · 04-16-2005, 12:19 PM

Hi Susan,

Welcome to the board - I hope you'll find it a great source of comfort, support and info, as most members do. Incase you haven't already read it, Lisa T just recently created a thread called "Lots of new names around, roll call anyone?" and a load of people have introduced themselves on it - it'd be a great way to find out about everyone. Concerning your bike question, I don't have personal experience with it, I have a fear of bikes... Weird perhaps but maybe handy if you're epileptic. Gotta dash now, but welcome again to the board.

Best wishes,
Eilidh
x

Phoebe · 04-16-2005, 12:50 PM

Do you have an Epileptologist treating your seizures? Dilantin is very old, probably very cheap drug, but there are others that may be more effective without impacting your liver. Unless the Dilantin stops your seizures completely, it isn't worth the risk to your liver to take it. I have a feeling that the same doc treating the MS may be treating your seizures. Both of thiose areas are Specialties unto themselves. Are you positive your have MS? There are so many cases of misdiagnosis regarding seizures since they present themselves in so many ways that are not necessarily easy to identify. It is very important to have the accurate diagnoses so that you can receive the corect treatment. The wrong drug for your seizures can make things worse. Welcome. Phoebe

Lonelysun · 04-16-2005, 02:25 PM

As for MS yes they are sure that I have it........went through a multitude of test to makes sure it wasn t something else ...I have a multitude of lesions on my brain........and I agree with you ......I will be seeing my doctor next month and Im going to ask her to change meds ....can you give me names of different meds that I can write then down and find any information about them so when I do go.....so I would have the information about them......thanks for the welcome.........

Phoebe · 04-16-2005, 03:37 PM

Meds. AEDs, are prescribed based on the type of seizure. Not all of them are recommended for all seizure types. What type of seizures are you having? You also try to find the specific meds that stop our seizures. It is different for each person in a large sense and is specific to the individual. We really do not pick and choose what we want unless we do have a choice. Sometimes we do, but many times we don't. It is important to try meds that are specific to your seizure type however. Then the trial begins at that point. Phoebe