I'm Mono

[Mono]

I've made a couple of posts around the board so I thought I'd find my manners and introduce myself! I'm Mono and I reside in Brisbane, Australia.

I have a couple of other diagnoses attached to me but this whole epilepsy diagnosis is fairly new to me. I had my first "known" tonic clonic a couple of years back, but that was put down to being a side effect of medication I was on at the time. Strangely though, even after not being on any medication for some time, I continued to have tonic clonics.

After my second one, I went back to my doctor to see what was going on and got a referral to a neurologist who suggested I may possibly have epilepsy based on the fact I had had more than one seizure. I had heaps of tests - my MRI came back fine, my CT came back fine, my holter ECG came back kosher so they all ruled out heart problems, tumors etc.

Finally I had a sleep deprived EEG and the results were "immensely abnormal" - according to my neurologist. He didn't give me any specifics about what was going on so I said "so are we rolling with the epilepsy thing?". To which he quoted me, saying "yep. We're 'rolling with the epilepsy thing'"...and that was that.

I was sent on my way with a prescription of epilim and an appointment with a nurse/educator from Epilepsy Action. She was so helpful. She filled me in on the diagnosis, and offered to do a presentation at my workplace about epilepsy which was GREAT! My workmates all now have an awesome understanding of what I go through and how they can help me and seeing as I spend most of my time at work, this is a blessing.

My workmates started to fill me in on when they thought I was having some other types of seizures that I was completely unaware of having. I told the EA nurse about it, and she spoke with my neuro who asked me to come in right away. He said from what I've described, and what was shown on the EEG, I have definitely been having simple and complex partials which then progress into secondary generalised seizures aka tonic clonics. I start Keppra tomorrow which is in addition to the epilim I am already on.

So here I am, keen to learn more about the big ole E and hear more about everyone else's experiences.

 

[huskymom]

Hi Mono and welcome :hello:

I am happy that you have found us. There are a lot of others here from Australia, so you will fit right in. I love the idea of having someone come and make a presentation to your coworkers. That is fantastic! I will have to check into that myself. There will always be someone here for you to add advise, hold your hand or laugh with you.

 

[ashishsavadia]

hey, I m from India. I do have sleep disorders(for last 8 yrs) and have seemingly the same symptoms as you have. Just tell me
when you had your last seizure(frequency)?
did u have any knowledge of what was going on when it occured?
did u bite your tongue?
what part of your body jerked(upper or lower or whole)?
where you in a confused state of mind after regaining conciousness?
does it occur only when u have a deprived sleep?
any medication?

 

[Nakamova]

Hi Mono, welcome to CWE!

Your workmates and your Epilepsy Nurse sound awesome. I'm sorry about the seizures, but glad you've got a diagnosis and are going forward with treatment. Meds can be unpleasant, but getting control of seizures is important because of the risk that they will increase in frequency and duration.

Let us know how it goes on the keppra --as you probably know, many CWE members have tried it, and as with all the AEDs, it works for some and not for others.

Best,
Nakamova

 

[Endless]

Welcome, Mono!

Sorry to hear about your seizures, but it is wonderful that you got a quick diagnosis, and that you were able to bring education to your workplace. Especially wonderful that they are giving you feedback on other types of seizures.

I'm hoping you get 100% control soon!

 

[Mono]

Hi all! Thanks for such a warm welcome! It's so nice to be surrounded by awesomely supportive people