So I have been having a lot of syptoms of Juvenile Myoclonic Epilepsy and have been told I probably have epilepsy by every doctor ive seen so far. My actual neurologist appointment is Friday so I wont know until then. But I was just wondering how does it affect life having epilepsy... id like to know more about it.
My sister has epilepsy. The problem with hers is that she also gets absence seizures, as well as tonic clonic, and there's less types of medication that can control those. She's had her meds changed a lot, but she's got them all sorted out now and it's managed really well.
I think it depends on how it's controlled as to how it's going to affect your life. Sometimes it can be hard to control, sometimes it's a lot easier. Then there's also the idea of medication interactions. Some epilepsy meds interact with the pi.ll and some can be problematic in pregnancy. Driving can also be problematic, but it depends on how well it's controlled, etc.
What would you like to know? I can field a few questions.
My sister has epilepsy. The problem with hers is that she also gets absence seizures, as well as tonic clonic, and there's less types of medication that can control those. She's had her me.ds changed a lot, but she's got them all sorted out now and it's managed really well.
I think it depends on how it's controlled as to how it's going to affect your life. Sometimes it can be hard to control, sometimes it's a lot easier. Then there's also the idea of medication interactions. Some epilepsy meds interact with the pi.ll and some can be problematic in pre.gnancy. Driving can also be problematic, but it depends on how well it's controlled, etc.
What would you like to know? I can field a few questions.
Even if its just minor twitches would it interfere with getting a drivers license? And does it cause headaches?
And what can I expect them to do at the first visit?
Ah, I guess you would likely be okay with driving then (unless anything changes). Ask your doctor to be sure.
Headaches can be caused by epilepsy. My sister gets them a lot and used to get them before seizures.
As for your first vist, I can let you know what happened with my sister. She has blood taken (quite a bit actually) to check for any causes of the seizures other than epilepsy. Epilepsy is a disease that has an unknown cause, so they have to eliminate other things. She also had an EEG (once with flashing lights as well) and an MRI.
Note that we live in different countries (I'm Australian) and usual practice will change from place to place, so what they do for you might be a little different. But I hope this gives you some idea.
My mom took me to the ER when I told her about my twitches and headaches, so Ive already had bloodwork. They tested for like every disease in the world lol they gave us the results and there were 3 or 4 pages. And they gave me a MRI with and without contrast, and I had an EEG last month with flashing lights. I was just wondering if there was anything left for the doctor to do lol.
Ah, okay. They might repeat some tests (specialists like to do their own tests), but it's likely they'll move on to management. They might give you some medication.
Medication.... this all seems like a really long nightmare.... anyway thanks for the info. *
The medication might take some adjusting to, to start off with, but my sister has no problems with it now. She had a few side effects initially, but after a while, and some changes in doses, they went away. The only hassle is remembering to take them. And cost (I don't know if you have a health scheme to made them cheaper, but here we do and it helps a lot). And being aware of interections with other meds. It's a bit to take in intially, but it becomes part of a usual routine.
Hey. So just letting you know all I found out today is that I have near Syncope. The doctor said he has no idea what my twitches are and that he doesnt really care to find out. Southerners are so rude lol.
Near syncope is simply a type of fainting. Fainting is a symptom... I mean, it can be idiopathic (have no known cause), but you'd think he would have told you if there was a cause. Low blood pressure is a pretty common one. I assume you've been fainting?
What? He doesn't even care why you're getting the twitches? What a tool. It could be something really harmless (like tourettes), but it's just poor practice if he didn't explain why he's not doing any more tests. Did he tell you anything about it?
I dont actually faint I get half way there though... everything gets really bright and kind of tunnels and I get super dizzy. He told me to eat more salt because my blood pressure is too low. I know I thought he would care because every doctor ive been to since this started acts like this is a really big deal and hes just like I dont want to do the EMG or 5 day epilepsy watch. He didnt even say what he thought the spots on my brain are. He didnt tell me anything about what could be causing it and I have a family history of stuff like Epilepsy and MS so this is really worrying me. But oh well nothing I can do about it now. My mom told me if anything else happens she will just take me back to the ER and say we dont want to see him.
Yeah, low blood pressure is pretty common in young females. I don't think the salt is going to help you much though, unless you really don't eat any salt at all, which in a Western culture is really unlikely. Hypotension (low blood pressure) is actually a lot harder to treat than hypertension (high blood pressure). If you don't drink much water, or find yourself dehydrated a lot, I'd suggest you keep up your fluids. Dehydration can reduce your overall blood volume, and this lowers your blood pressure. In young people, it often doesn't have a known cause, and so it's more a management idea. Making sure you get up from sitting or laying down slowly, etc. Avoiding the things that make you dizzy.
MS doesn't onset until late 30's - 40's, so I wouldn't worry about that.
Your mum's probably got the best solution. If something changes, go back and see someone different. That includes if your twitches get more frequent, or severe.
Hey molly, sorry i didnt say something earlier but i only just saw your thread.
When I was 11 years old I had a stroke and was diagnosed with epilesy. I adventually grew out of it, or so the doctors say. I havent had any symptoms in 3 years. And I have really low blood pressure as well, I find that it helps me to drink LOTS of water. I hope everything works out for you.
Hi Molly, my brother's fiance has epilepsy, she has had it for as long as she can remember. It is very severe, to the point that she can't drive becuase the light shining through the trees causes a strob effect, and she will have a siezure. She almost had one at my brother's gradutation party, not trying to scare you, she has a very extreme case of it.
I don't have epilepsy, but I do have a close friend who does and has since she was little.
She is just like every other tomboy I know. She loved to wrestle, sword fight, climb rock and horse back ride. I have known her for 6 years, and only last year did I find out she had epilepsy. When I asked her about it, she says that the only time she minds it is when she is "reading a book, have a siesure (spelling?) and lose my spot!" The only time I have seen it affect her was that she couldn't come over to my house after school for a sleep over because she did not have her medicine to take at my house.
Wow that must have been hard. Thanks for the water tip. :) *