Nervous newbie here...

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Maidenminx

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Hi. I'm not sure where to start...

I'm a 31 yr old mum of one. My husband and I were married last june on our 8th anniversary. Last September I had my first tonic clonic. I was diagnosed with temporal lobe epilepsy 2 weeks ago, which was 3 weeks after my second tonic clonic. I now understand I am quite prone to both simple and complex partial seizures.It's been a scary ride.

I've been prescribed tegretol, 300mgs twice a day. I am finding myself rather housebound and scared these days. I don't like going anywhere without someone else. My second tonic clonic was at the bus stop waiting for my don to get home from school, which was both embarrassIying and scary.

Ummmm so that's me.
 
Hi Maidenminx...Welcome to CWE! I am fairly new here too and I think you will find a very welcoming support group. So many great people with many different experiences to help you.

I could understand not wanting to go anywhere by yourself or even being scared to be alone. I know that the beginning of this can be quite a roller coaster, it has been for me. I've just realized the best and only thing I can do is to grab hold and hang on.

Again, welcome to CWE <3
 
Welcome to our little group here! You are certainly not alone.
It is a scary ride. It's amazing what you can get used to out of sheer necessity.
I hope that you have lots of understanding love and support.
Is your medication working?
I live in a rather rural area and I do not have my drivers license anymore so I know how isolating things can be. Especially as a mom. I have 3 young ones and it's a juggle.
I only have simple partials which are embarassing but I can only imagine the fear you must feel when you black out.
I don't blame you for not wanting to go out alone. Your sense of independance gets shot and suddenly you have to depend on everyone for everything. Even simple things you cannot take for granted.
This must be a difficult time of transition for you and I hope things improve for you soon.
How are your spirits holding up?
 
Maidenminx said:
Hi. I'm not sure where to start...

I'm a 31 yr old mum of one. My husband and I were married last june on our 8th anniversary. Last September I had my first tonic clonic. I was diagnosed with temporal lobe epilepsy 2 weeks ago, which was 3 weeks after my second tonic clonic. I now understand I am quite prone to both simple and complex partial seizures.It's been a scary ride.

I've been prescribed tegretol, 300mgs twice a day. I am finding myself rather housebound and scared these days. I don't like going anywhere without someone else. My second tonic clonic was at the bus stop waiting for my don to get home from school, which was both embarrassIying and scary.

Ummmm so that's me.
Click to expand...
Welcome Maidenminx! You've come to the best place for support, advice, information, and just regular chitchat on epilepsy or whatever else is on your mind.
I too got a diagnosis of temporal lobe e after my second grand mal, and also was put on tegretol (carbamazepine). So we share a few things. I was 25; had a partner but no kids.
I wish you all the best on your medication... just to give you my experience on it I went 11 days shy of five years grand-mal-free.
(((BIG HUGS))) !!!
 
Welcome to CWE! :)

Ive been in your shoes and it is very scary when it comes to any kind of seizures, but for me, grand mal or tonic clonic seizures are the most scariest of all. I was diagnosed with Left Temporal lobe Epilepsy at the age of 18 months old. I grew up having tonic clonic and complex partial seizures. My last tonic clonic seizure was in 2001, if I recall right. Since then, I was on Carbatrol and Keppra, til last year when I had my first VEEG. Ive been on Keppra XR since then and things have been ok, but I do have simple partial seizures if I dont get enough sleep or are really stressed out.

there are alot of amazing people here! If you have any questions, feel free to ask! :)
 
qtowngirl said:
just to give you my experience on it I went 11 days shy of five years grand-mal-free.
(((BIG HUGS))) !!!
Click to expand...

Thats great qtown! Was there something specific that happened to trigger a seizure? I know sometimes its just a guess. My (ex)husband has had E. since he was 15. He went many many years seizure free on dilantin. He had his appendix removed and in the recovery process had a TC. They chocked it up to the dilantin wasnt building up in his system the way it was supposed to due to diarrhea from the pain meds/antibiotics. Anyway over the years he would go seizure free for awhile but they would still come. They ended up changing his med to Lamactil? (were not together anymore) His neurologist said it was just a med that didnt work for him anymore.
 
Hi Maidenminx, welcome to CWE!

Make yourself at home, pull up a chair, and help yourself to some cookies and day-old coffee...

Best,
Nakamova
 
Kaitybugsmom said:
Thats great qtown! Was there something specific that happened to trigger a seizure? I know sometimes its just a guess. My (ex)husband has had E. since he was 15. He went many many years seizure free on dilantin. He had his appendix removed and in the recovery process had a TC. They chocked it up to the dilantin wasnt building up in his system the way it was supposed to due to diarrhea from the pain meds/antibiotics. Anyway over the years he would go seizure free for awhile but they would still come. They ended up changing his med to Lamactil? (were not together anymore) His neurologist said it was just a med that didnt work for him anymore.
Click to expand...
Stress, Stress, Stress... and one partial just couldn't hold its own anymore and that was it. Unfortunately though it 'decided' to hit while I was driving. Thankfully no injuries to me or much to my car. Ahhhh... good times.
The massive stress was due to a life change - left my life behind for a new relationship and moved in with him and his children. Woah.
 
Hello and welcome to the show!! I will try to leave some cookies on the plate, but be warned, I have a tremendous sweet tooth :)
 
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