Newbie here...(focal onset epilepsy) looking to chat

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!


Reaction score
Hi everyone!

I was diagnosed with focal onset epilepsy about 3-4 months ago after a year of being told I had panic attacks/anxiety a little bit of a relief strangely enough.

I have simple partial seizures which involve an epigastric rise (I believe thats what they are called), burning or smoke smell, over whelming feeling of fear, vision goes a little distorted and my fingers feel like they have pins and needles. I have only every had the burning smell once, it was for about 1 second and the rising followed immediately. The rest have just included the other symptoms.

I have been put on Lamictal, currently on 75mg per day, wanting me to be on 100mg which I will be increasing to next week.

Just wondering if there is anyone else out there with similar experiences? I have only ever had these however there is always that thing in the back of my mind that they may get worse and generalise, but unsure with me being medicated now.

I havnt had a proper one for some time now but I do get occasions where I come across very hot and anxious for now reason, really uncomfortable but they never progress to a full partial seizure as I call them.

Im hoping getting to my therapeutic dose will sort that out.

Anyways...just a brief info if anyone wants to chat :woot:
Hey sibbp84, welcome to CWE!

I get generalized seizures (no partials), so my experience is different. But we have plenty of members who have a history with partia a nd can share notes. :)

As to whether your seizures might generalize, there's no way to know for sure sure, but the best way to lower the risks is to work to get them under control. It can also help to be proactive about your general health and in identifying and avoiding secondary triggers. See for more info.

Not sure if it will get better or worse.I know for me it's progressive and getting worse. I have a couple of different types. I call them big ones and little ones. The big ones I have 2 or three in a row ,I'll be stiff as a board flopping around and peaking on myself.
The little ones, I have da Ja va get real anxious, puzzled, seems like I seen and done it all before. Then everything taste funny. I do get the pins feeling in hands and arms. Good luck and God bless.
Sweetroll - Thanks for your reply. Has yours gotten worse even with medication? Are they under control now?
Nakamova - Thanks :) Im taking every measure to try and keep them small, I avoid my triggers such as stress and lack of sleep. I havnt had caffeine in almost a year and I drink in moderation (very rarely) so Im just going to keep positive as theres nothing you can do anyway.
They just get worse and weirder more frequently. I can't get sleep at night. I'm a nervous wreck. God and family have been what's getting me by. Thank you.
Hi sibbp44,
Welcome to the forum! I have simple partial also called aura seizures and I will see colors flashing back and forth in my eyes, along with getting a nervous feeling in my stomach. Sometimes I will smell gas or deviled eggs when they happen and then I will go into a complex partial or absence (petit mal) seizure. My Epileptologist taught me to tighten up all the muscles in my body and make my hands into tight fists the moment the seizure starts and by doing this this stops the seizure. It has worked great and I've been doing this since the late 1970's you may want to give it a try and see if it stops the seizure. I wish you the best of luck and May God Bless You!

I think I'm going to have to try that. So do I start the muscle tightening as it starts.
Hi Sweetroll,

The moment you have any sign of a seizure starting tighten up all the muscles in your body and make your hands into tight fists do this for a few seconds or if you notice that the seizure is stopping. Good Luck and May God Bless You!

Top Bottom