A nervous hello from 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!

Cherriuz

New
Messages
304
Reaction score
0
Points
0
Hi there. I'm Sarah - 24years young with 4 and 5 year old boys. I am just starting out my journey after 2 seizures, one drop which involved going top to bottom down the stairs, and wetting myself both times :ponder: probably one of the worst places in my house it could have happened. Anyways. Waiting for my neurology appointment and am feeling scared, unsure and hoping for answers from them. My doctor noted "epilepsy" on my file, surely it's not her place to decide?
But in the meantime, i have come to bother you lot and try and find out what to expect at neurology and going forward.
Look forward to meeting you all! :woot:
 
Big warm welcome Cherriuz,

Normally they will do a physical exam, EEG and MRI/CT scan, check your blood (make sure they check everything possible in your blood, vitamin and mineral levels, glucose) and don’t be shocked if nothing negative shows up on these tests, because for many E sufferers do not show any abnormal brain activity yet still have regular seizures.

Is there any chance you could be referred to an Epitologist? Epitologists are Neurologists who specialize in seizures (something is taking you down, right down the stairs, I am so sorry) and they tend to look at and treat the whole person and we are all so unique and different things trigger seizures for many and all aspects are worth looking at.

Neurologists deal with all kinds of brain disorders. But hey, rather a Neurologist than no doc. So of Epitologist not possible, keep it in your pocket for a 2nd or 3rd opinion, guess what I am trying to say, you may want to keep your options open and make sure your doc is looking at you “the whole you”

My Son is 26 with E and we just in process of moving away from Neurologist to an Epitologist to make sure he getting all the care possible (he has T/C and various other seizures).
 
Hi Sarah, welcome to CWE!

Sorry you are having to deal with this -- I know the initial stages of a diagnosis can be very scary and confusing. Don't be too distressed by the "epilepsy" tag -- it's pretty standard after two seizures that don't have any apparent cause (like infection or toxins). Most likely your neurologist will have you do an EEG and an MRI. Based on the results, the next conversation would be about whether and how to treat.

Often, seizures are a combination of a lowered seizure threshold (from a primary, perhaps unknown cause), and a secondary trigger that pushes you over that threshold. It might be helpful if you can right down everything you remember about the days and hours leading up to the seizures, in the hopes of identifying things that may have been secondary triggers. Look for anything that might have stressed you physically, physiologically, or emotionally. The #1 trigger is fatigue, but it can also be things like low blood sugar, low blood pressure, food sensitivity (gluten/MSG/aspartame), nutritional/metabolic issues, hormones, illness/infection, photosensitivity, dehydration, etc. If you remember any unusual or unexplained symptoms or episodes, write them down to let your neurologist know. The neurologist will also want to know if there's any family history of seizures or other neurological events, as well as your own health history.

In general, it can help to write down any questions you have for the neurologist as well as the answers he/she provides. Make sure you are clear on everything and know how to contact the neuro if you have additional questions. If possible, bring someone with you to help take notes.

If you have been put on medication, ask about it's potential side effects and anything you might need to know about taking it. I remember feeling terrible after my initial seizures. I though it was all due to the seizures or some underlying disorder, but it turned out I was way overmedicated and that was causing a good deal of my distress.

I hope you feel free to check in here with any questions and concerns. CWE members have "seen it all", and are a great resource for info and support.

Best,
Nakamova
 
Thanks all, im just so confused right now. and feeling so alone rattling around in my head wondering whats going to happen, and theres no way i can predict it which is making it worse. To be honest at the point i will happily take whoever i am given to see me, and pending on how it goes may think about swapping. i do have a GREAT relationship with my GP. she helped my parents to adopt me and she has been caring for my eversince so i know if im not happy she will help me out. i guess i shall have a nosey about and play the waiting game for now! thank you for the welcomes! feeling less alone already! xxx
 
Best of luck going forward! I am not super new but don't post as often as I should but everyone here is awesome and very informative.


Sent from my iPad using Tapatalk
 
Welcome to the forum! I am new, too, and you won't believe how much support and information you can find on CWE!

I am sure the episode you had on your steps took you by surprise, but if you start to feel funny (dizzy, blurry vision, or just plain out of it), I would definitely either sit or lie down wherever you are, for safety's sake!

Hope you find some answers!
 
*Waves back* thank you very much hun, starting to feel at home already
 
Yes! You will! I've not poste too much yet but it's very helpful! I'm very nervous and have only been diagnosed for a month. I'm finding it tough but everyone is helping to see the light at the end of the tunnel :)
 
Back
Top Bottom