Newbie Here!

[smiling1809]

Hi! I'm Kimberly. I am here looking for info and support on seizures. I was diagnosed with what my neurologist called "seizure disorder" back in 1996 because I would stare off into space, sometimes jerk around when sleeping, and was very moody. I had two different EEGs to confirm it. I was on Tegretol for two years. I got busy, stopped going to the doc and blew it off. I have been fine until now. FF from 1998 to 2010.

I recently started having problems. It started with forgetting brief episodes like conversations I had with my husband and child. I started sometimes jumbling sentences and words for short periods of time. A lot of times I can't find the right words.Sometimes, someone will talk to me for about 10 seconds or so, and I don't hear a thing they say. I just zone. I then started having headaches. Then the phantom smells and tastes started. I smell things that no one else smells. The other night, I was awoken from a sound sleep with a bitter grapefruit taste in my mouth. It was awful. A few days ago, after a bad headache, I had a bout of uncontrollable crying, then laughter. It was strange and very uncontrollable. I have also been having very acute hearing to the point where it almost hurts for a few seconds. All sorts of weird things have been going on.

I went to my internist and he immediately thought I was having some sort of seizures. His brother happens to be a neurologist and in the same office. He pulled him into our appt and the neurologist said it had to be some sort of seizure activity. I am going for an EEG and MRI next week, then to the neurologist. for an offical appointment.

I am already on Lamictal 200 mg for bipolar depression. The neurologist wants me on some sort of other medication after my EEG. I have no idea what it is b/c my PCP called it in.

Anyway, I am very nervous. I forgot about having seizures before (I was in my very early 20's and never took it seriously since I never had what was the stereotypical seizure.)

I thought I would seek out a message board so I could read other people's experiences instead of just reading websites with the exact same symptoms listed over and over.

I'm so glad to find you guys!

[Blondie47]

Kimberly,

Hello and welcome to CWE!

You will find so much support and information here! It will help with the nerves a bit.


Take Care

[Endless]

Hi, Smiling,

I'm glad you found us, too! The people on this site have been an endless source of support, help, information...

[ddr1166]

Hello, Newbie -
This is a great place for support. My husband had his first full tonic clonic at age 45 on New Year's Day this year, and has had two full seizures (less in severity) since. We're going through the medication process. When I say process, I'm learning that everyone is so different with meds and symptoms that you have to hang in there and work on what works for you. This place is so great for support. I'm also learning to be patient...(I'm NOT a patient person!)

Good luck! D

[Nakamova]

Hi Kimberly, welcome!

I recommend that you ask your neurologist or PCP about the other med they prescribed for post-EEG. And/or talk with the pharmacist about it. The more info you have the better. Most likely there are folks here at CWE who have tried the med and can give you info/advice if you need it.

Write down any and all questions you have for the docs, and ask to get their replies in writing, along with copies of test results. And if possible, have someone with you at your doctor's appointments to provide a second set of ears. It made a big difference for me.

Best,
Nakamova

[Ruth]

Hi Smiling,

Welcome to CWE. Bernard made CWE out of love for his wife Stacy. That love permeates throughout the whole forum.

You will get a lot of support and encouragement here. We look forward to your support us.

[PhylisFeinerJohnson]

As Nakamova said, make friends with your pharmacist. They have an amazing wealth of knowledge at their fingertips, which means at your fingertips. Many also have access to new technology that can answer questions such as, “Is it safe to take this brand-new medication with this even newer medication?” What's more, they get a soldier's-eye view of patients with similar conditions using different medications every single day. They see who improves, and who complains about side effects. Plus, pharmacists can be helpful in discussing the potential adverse effects of medications, their costs, the relative risks and benefits of generic versus brand-name medications, and potential interactions.

Welcome and lots of luck. You'll find not only answers here, but caring and compassionate people!