A Newbie

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
14
Reaction score
0
Points
0

Hiya just a quick hello. My name is Angela. I have had two seizures in 6 months but have not been diagnosed with epilepsy. I have an appointment with a neurologist in a week's time. I really came on here to find out more information and speak to like-minded people. Anyway Hello.
 
Hello Fizzy Mint (cool name)

I don’t have E but my Son of 27 does....

what kind of seizures ?

Suggest you keep a diary, of all potential seizures or anything out of norm...will be helpful for future reference...just a notebook will do it, date, time, type, can help you find triggers..

There are lots of treatment options, meds and natural approaches in conjunction with meds....so look and search and study and educate yourself if at all possible…the net can be overwhelming with info....but feel free to ask questions. a great group here will chirp into answer or simply give you support....we need and learn from each other here...

http://www.coping-with-epilepsy.com/index.php?p=alternative-treatments


Good you are scheduled to see specialist, you will most likely undergo MRI and EEG to help determine root cause, if visible..

Keep us posted...
 
Hey Fizzy Mint - feels like the weird sensation in my arms when I'm having an aura! I'm new here too but have had E for nearly 30 years, started with me waking up on the floor with a horrendous headache, no-one witnessed a seizure for a few months. Make sure you have a good description of all your symptoms to take to the specialist (so ask anyone if they have have witnessed to write it all down for you). Good luck!
 
The first seizure occurred on a flight on the way to the toilet. I paused to say hello to another passenger when a buzzing and then numbness is the best way to describe it took over my head and that all I remember until waking up feeling sick and disorientated and wondering why I had pissed myself. Luckily for me my husband is a nursing assistant and knew what to do in this situation. The head of the cabin crew admitted he had never had a medical emergency in 11 years of flying. My second seizure occurred this past monday . I got up to use the toilet at 6:30 am made my way back towards the bed when I had the sensation of someone screaming from inside my head. Then I woke up and tried to figure out why my husband his mother and three men in green were staring at me. So those are my experiences so far. Thank you for your messages and for listening.
 
I am scared about the lifestyle changes this may bring about. I had hoped to get a driving license this year but that's out the window now. I just wonder how I will have to adapt my life around epilepsy.
 
Fizzy Mint

educate yourself,,,,,learn all you can....don’t let fear or worry get the better of you...grab this bull by the horn and take as much control as you can, by educating yourself....there are many, many alternatives that will help.....

Go into battle mode (to take best care of you and your needs) and turn this into not what you cannot do but what you will do...and still achieve...
 
Hi Angela, welcome to CWE!

As Chaz says, information is your friend when dealing with seizures. It's good that you will be seeing the neuro soon. If you can, make sure someone comes with you to the appointment. Write down all the questions you have for the neuro, and write down the answers too. Don't be afraid to speak up if anything the neuro says is unclear. Given that you have had two seizures, the neurologist may schedule tests (EEg and MRi), and may prescribe medication as well.

When you have a better sense of how you and your seizures respond to medication, you can put driving back on the table as an option. In the ideal scenario, the medication will keep things under control, and you'll be able to drive after a seizure-free period. (Not sure what the laws are where you are -- it's usually 6 months to a year). Yes it can be hard not being able to drive, but you don't want to risk having a seizure while driving.

Best,
Nakamova
 
Thank you everyone for the warm welcome and the advice given, has been really helpful. Here in the U.K. a person has to be seizure free for 12 months before driving. I have a fair few questions for the neurologist next week.
 
Hi,

Relax, take a deep breath...

You are going to be OK. You can live with having E.

When you get on the right meds. or combo. You will learn what you can and can not do.

Ask any and as many questions as you like.

WE have all there and want to help in anyway.
 
I have so very many questions for the neurologist next week I will probably need a week to get them all answered.
 
update

Had an appointment with the neurologist this past Tuesday. He is sending a letter out for an ECG. I was offered medication at this appointment or the option to wait until I have my ECG and IF chose to wait.
 
just remember EEG and MRi come back normal most of the time for most of us with E.

I had I can't count that came normal until I when to a teaching hospital close to me.
 
EEG my husband just corrected me. Though I did have an ECG in A&E three weeks ago because my husband was concerned about my heart( but that's for another forum). I would like to know if anyone has had a seizure induced whilst having an EEG as they are going to try to induce one whilst having the EEG to pinpoint the exact type and location of my seizures?
 
I have not had a seizure, with all the types things they did trying to get me to have a seizure.
 
Hi Fizzy Mint --

I've never had a seizure during my EEGs, but the tests still confirmed the epilepsy diagnosis. That's because some kinds of epilepsy produce distinctive brainwave patterns even when you aren't having a seizure. Those patterns can be just as helpful for diagnosing epilepsy as the ones that appear in the midst of a seizure. So while it would be pretty dramatic to have a seizure during the EEG, you won't necessarily have to have one for them to make a diagnosis.

I hope it get scheduled soon, and that it goes well for you either way.
 
Hi Fuzzy Mint,

Welcome. I'm glad that your here. Its a good time to be with people who know what you're going through and have been there. This community is amazing and can be such a resource and support network. I know that EEG can be terrifying, but as others have said, Take a deep breath. Things will be alright. I'm fully in the grips of how hard the life changes related to a new Epilepsy diagnosis or new on-set seizures can be, but you've got this. Things will change, that's a given. Still, I have absolute confidence that you can handle it. If you ever need to talk, send me a message. :)

-Mary
 
I am really glad to have found this forum, as it has provided loads of answers to my questions about epilepsy. I honestly thought my first seizure was going to be a one-off, but is good to know there are people here I can talk to about it. :)
 
we learn from each other here at wonderful CWE......

EEG should be not too stressful I would like to think....hopefully someone will attend with you and relax alongside u, I did with my Son..
 
Back
Top Bottom