Living with epilepsy - Introduce yourself & meet others

had a few in october, nov, dec,now on vimpat and keppra.dont drive,only go in water if theres people around,havehad to avoid a lot of things.lived most of life near the ocean,never swan in ocean,been up to my knees thats it,sex ok for me just had a late start,lol.

The keto Diet? Thinking about trying it. Anyone have thought about it?

Hello I have a 5yr old she is having several seizures a day have had an egg done and doc says she is trying to prevent her from having grandma seizures and she is very tired alot my question is how long should I let her sleep in the day for nap. We are waiting to go for mri to rule out tumor but med is not helping as she seems to be having more staring spells a day and do I home school her as she is so tired and couldn't handle an 8hr day with out a nap I hope someone can give me some advice as thank you and God bless

Do you know if she is having typical Absences or Atypical Absences? Typicals rarely if ever cause tiredness. If Atypical it’s common to be tired and need to rest or sleep especially if they have more than one or a group of them. Atypical Absences also last longer, usually 10-30 seconds. Does she just stare for a very short time maybe 3 seconds or so or is there some type of movement like lip smacking, rubbing fingers together, eye movements blinking. Can you arouse her at all. If having a typical Absence the person can’t be aroused. These seizures usually begin prior to age 6. They very often stop by age 18. Has she ever had a Grand Mal Seizure? Now known as Tonic Clonic. If so has the doctor ever mentioned Lennox Gastaut syndrome (LGS) With most people with Epilepsy an EEG and MRI are usually normal.

They last for 12seconds and up her eyes go up and her head goes up and I have taken things from her hand while having one and she doesn't recall it happing she has nor memory of what is going on while she has them they do have her on med but it is not working and they are wanting to do a 48 hrs eeg end of August and a mri this week do I home school her because she is tired and I don't think she can handle a 8hr day and she takes a 2hr to 3 hr naps and goes to bed of. Ti.e

Time varies from 30 days to about 2 years or more that I’ve seen but there is no absolute time period. If your claim is for a terminal condition you’ll probably be approved in 30 days. If it goes to the second phase it may be approved or denied in 6-12 months. In some cases 4 months but I wouldn’t count on it.
If the claim goes before an administration law judge your chances for approval have gone down substantially and can take a year or more. Usually helps to have an attorney. Good luck!!!

When I have a seizure my lips smack and I twist my right fingers like I'm snapping. As a result I have to do hand and finger exercises. The hand your squeezing something like a ball and for the fingers there are tools that have weights that you hold in your hand and move your fingers like your playing a piano to make them stronger. You can get these weights at a sporting goods store. I'm in my 40's and I'm also having to do some things with my left hand because my right hand and fingers get tired. You might have to home school or get an IEP individualized education plan. You'll have to talk to the school

Let your daughter take a nap as long as she needs. Fatigue can be a trigger of a seizure as well. By having several seizures daily she's exhausted

Hi sweetpea81212, They sound like typical absences to me but they also sound like they have some Atypical characteristics which only a doctor can decipher. The hours of sleeping confuses me. Are you sure she isn’t having another type of seizure, perhaps. In typical absences removing something without notice makes since without remembering. Does she ever jerk, arms legs head?? Although It doesn’t sound like Myoclonic jerks, has the doctor ever mentioned that? The EEG will show a slow wave pattern if Absences are present. Most MRI’s in Epilepsy patients when looking for causation turn out to be negative.
One important thing you need to know is studies have been done showing how important it is to not switch drugs from Brand to Generic and vs versa and ALWAYS use the same manufacturer too. What drug/drugs is your daughter taking. Phenobarbital has been in use for over 100 years. It is the number one used seizure medication in the world Wishing your daughter the best and your
family too.

For those moviegoers who have epilepsy and are photosensitive please be aware of this warning if you plan to take your children (or grandchildren) to see Incredibles 2:

June 19, 2018

"If you’re one of the roughly 4,000 Americans with photosensitive epilepsy, going to the movies may not be as simple — or fun — as you’d like to think. At least that may be the case if the Disney Pixar smash hit Incredibles 2 is on your must-see list.

That’s because the film contains scenes with sequences of flashing lights that may cause problems for those with the condition, according to moviegoers’ accounts posted on Twitter. The Epilepsy Foundation says those with photosensitive epilepsy are prone to seizures “triggered by photic stimulation” or “induced by light.”

After moviegoers expressed concern on social media, Disney Pixar emailed a letter to theaters screening the film on June 15 instructing them to post warnings for those with photosensitive epilepsy. The signs caution moviegoers about scenes in the film that contain “a sequence of flashing lights which may affect customers who are susceptible to photosensitive epilepsy or other photosensitivities.”

To read the entire article, please follow this link, https://www.everydayhealth.com/epilepsy/incredibles-2-triggers-photosensitive-epilepsy-susceptible-theatergoers/