Skip to content
My WebMD Sign In, Sign Up

Announcements

Newly diagnosed? Visit the Epilepsy Health Center, check out community tips and review resources.
Hello, totally new to this
avatar
missist posted:
Hi, I am in my mid 50s and have fibromyalgia--but the past year or so I've had these weird nocturnal episodes. My dad had a brain tumor at my age so I was getting worried. When they began to happen weekly even 2x or more times a week I sought a neurologist. Had MRI ruled out tumors. Had EEG which I am told revealed a pattern that is very specific to epilepsy. so I am on Lamictal and see neuro again in a few weeks to talk about it more and see how it is doing.

I don't really know any more--like what kind of epilepsy etc. I experience an aura--which is usally tension and loud ear ringing the day of the seizure and then I wake up to ear ringing, and a visual aura before I experience what is a sort of travelling numbness accompanied by little jerks of various parts of my body. Last night it was more severe-I feel it has been gathering steam the past month or two. I'm not up to a treatment dose of Lamictal yet, I'm only taking the early dose, I'm supposed to increase dose in increments.

So far all my seizures--as I now know they are-- have happened at night--mainly when I am asleep, although I do have some minor jerks now and then when I am awake. I've also had a couple of episodes of just a lot of eye blinking--which seems to be happening as a new thing in my seizures too.
Last night I had I think the most active-ish seizure. I found my body moving a lot more strongly than usual and it seemed to last longer. One night I had what seemed to be several events.

So no idea why this happened--maybe a head injury as a kid-- I was in a big family so there was plenty of rough and tumble going on.

Anyhow I just wanted to intro myself, if anyone has advice for a new patient let me know. I have really no clue what happens next.
Mary
Reply
 
avatar
dancer86442 responded:
Hello missist,

Welcome to the Epilepsy Community. Thank You for sharing your Journey & asking questions.

Please visit the Epilepsy Health Center highlighted in Blue at the bottom of your page. It will describe various seizures & the Type. Everything you described confirms the EEG test readings. You may have more than 1 type of seizure, though.

Advice: I highly recommend you read the Journal Info in Tips on the Right. Start your Journal Today.

What happens Next? You start learning about All the Aspects of Epilepsy & treatments. This may sound like a Lot to do, but, it is Important. You know your system best & you need to know as much or More than your DRS do. In most cases.

You are on an AED (anti-seizure med) and even if you haven't reached your therapeutic amount yet, it is Important to remember to eat Healthy! This insures your meds are metabolized properly & that they will work more efficiently w/ fewer to no side effects. Note anything 'Odd' in your Journal along w/ Questions for your DR. Take the Journal w/ you to all DR appts! Resources should have a Link to 'Questions for your DR'. Let me know if you can't find it.

You can read my Journey by cliking on my pic or ID. I believe the best advice is to take it one day at a time. Seizures don't discriminate as to when they will happen. Learn your triggers w/ your Journal & then try to avoid those triggers. Triggers can be Food or additives, lighting, Fluctuating/changing hormones & so much more.

Do not Stop taking your medications unless advised to do so by your DR. If you cannot tolerate side effects or seizures continue after 2-6 weeks of Therapeutic dose, then you will need to try another med or opt for an 'alternative' treatment.

Love Candi
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
avatar
saxofone1 responded:
Hi missist,

Welcome to our community.

In addition to Candi's thoughts/suggestions, I would like to add Amazon as another place to start looking for info about epilepsy.

We all had a lot to learn during the early days. We are still learning cause new info is always being released. We will never know it all but having handy references can be a plus.

Please start that journal and keep it close at hand whenever possible. Questons or concerns pop up all the time.

My story is also available to read. I guess you know that I'm in the head garb. The girl before is Dana(clarinet2) who had her lobectomy (brain surgery that removed problem area) about 4 months prior to mine.

Keep us posted on how you're doing. It is okay to feel fear. It is never okay to not discuss/share your concerns.

angie
 
avatar
missist replied to saxofone1's response:
Hi Candy and angie-- thank you for welcoming me and pointing me in a good starting direction.
Mary
 
avatar
dancer86442 replied to missist's response:
Hi Mary,

Happy to hear we were Helpful! Anytime you have questions or just need to vent or chat we will be here for you. Keep Sharing! And Learning!

Love Candi Hugs!
November is Epilepsy Awareness Month Wear Purple/Place a Purple light in/on home/businesses. Encourage others' to show Their support
 
avatar
saxofone1 replied to missist's response:
Join us whenever you need to share. Check out some of the other discussions cause your words may be the support someone is looking for.

angie


Helpful Tips

Journals posted by Meetz
Meetz posted: Hi there. I don't want to sound bossy or presumptuous, but after 44 years of practice with E, I have a bit of experience. I ... More
Was this Helpful?
33 of 43 found this helpful

Related News

There was an error with this newsfeed

Related Drug Reviews

  • Drug Name User Reviews

Report Problems With Your Medications to the FDA

FDAYou are encouraged to report negative side effects of prescription drugs to the FDA. Visit the FDA MedWatch website or call 1-800-FDA-1088.

For more information, visit the Duke Health Epilepsy Center