Hello!

[RobinN]

Rebecca also wants to go back to class. She will not be held back, and is stubborn whenever it is suggested that she go home. I usually let her decide how she feels, and if she is okay to return to class. I can imagine though how it scared you when his lips turned blue. I too, wish there was more knowledge and compassion within the schools.

Yes, I have read that there are many that have episodes during sleep. Many people keep a baby monitor in the childs room. I might also add a set of bells to the bedframe if I knew this might be a possibility. I do however leave Rebecca home alone, as she is 16. However, it is worrisome, to say the least.

[Meetz1064]

1. I'm longing to hear from a person who goes thr it, how does it feel to a person who gets seizure? Does it hurt badly somewhere? In my case, I don’t know that the seizure has started, I don’t even feel it come on. So, no, at that time, I feel no pain. But the pain is definitely there afterwards. I have been told that I’ve scared some veteran paramedics…….I have done a lot of damage to myself. One time, I evidently stuck my head between a toilet & a bathtub when there was only 5 inches to spare. And got myself back out of it…And I chew all the way through both sides of my tongue, too. Every time I have a seizure.

2. Would he/she be conscious during the seizure? Well, that depends on the type of seizure. I have the tonic clonic variety, and I’m definitely unconscious.

3. Can you understand other's reaction etc during seizure or become unconscious totally until you wake up? Ummmmmmm. I do understand people when I am finished. But I am totally unable to communicate. Are you kidding? Have you tried to talk with a butchered tongue? My brains are scrambled eggs anyway for about 4 or 5 days afterwards….then I usually cry for a few minutes, and go to sleep. It takes the better part of a month for my tongue to really heal......

4. Can you sense beforehand that you are going to start getting a seizure? NOPE!!!! I WISH!!!!!!!!!

5. n/a

6. My son falls asleep right after seizure ends for an hour or 2. When he wakes up, he complains of head ache. He couldn't tell anything more. It breaks my heart.
I sleep for anywhere from 18 to 24 hours immediately after I have a seizure. My kids usually come in and check on me, feed me meds in my sleep, etc. But for the most part, I’m out cold. They’ve learned some tricks over the years to get me to do the necessary things. My doc usually will stop by the house. He knows it’s the only way he’ll find anything out. Especially if I can’t talk. If he can’t, he sends someone over. I’m usually covered in bruises, to say the very least…….

[brain]

Here are my questions:
how does it feel to a person who gets seizure? Does it hurt badly somewhere?
Would he/she be conscious during the seizure?
Can you understand other's reaction etc during seizure or become unconscious totally until you wake up?
Can you sense beforehand that you are going to start getting a seizure?
If yes, is there a way to prevent it by doing something before it becomes too late?

My son falls asleep right after seizure ends for an
hour or 2. When he wakes up, he complains of head ache. He couldn't tell anything more. It breaks my heart.

Thanks for your support!
Amy

1. How does it feel to have a seizure?

Ans: 98% of the time I don't even realize I had
one, with the exception of Atonics (Drop Attacks)
or Simple Partials (to which I am semi-aware of
but having no control over it at all).

2. Does it hurt badly somewhere?

Ans: Only if I had a Tonic Clonic and I crashed
into something, like shower railing/tub, furniture,
for example.

3. Would I be consciousness during the
seizure?

Ans: 98% of the time - NO

4. Can you understand other's reaction etc
during seizure or become unconscious totally
until you wake up?

Ans: In post-itcal stage (or after seizure stage),
with the exclusion of the Atonic & Simple Partials,
all others I would be confused, in a daze, slurred
speech, staggering like a drunk, incoherent, etc,
and all the time would fall right to sleep shortly
afterwards.

5. Can you sense beforehand that you are going
to start getting a seizure?

Ans: Certain seizures I would get an aura or
auras, but even when I get an aura or auras
(warning sign that a seizure may come); it
does not always mean that a seizure will come.
I could have 10-20-30 auras and not have a
single seizure, and get 1 aura and be slammed
with a seizure.

I heed these warnings and stay at home and
in my "safe zone" and let my son know about
it if he's not at work. But for me, many of the
auras I get during the daytime are usually a
warning that I will have a seizure or seizures
later on at nights. (In the past, but it hasn't
been this way, there's been a change now
since 2005 where it's striking within 10 minutes
to 12 hours).

6. If yes, is there a way to prevent it by doing
something before it becomes too late?

Ans: The only prevention is being in a "safe zone"
and being watched and monitored over. Make
sure medication(s) are being taken as scheduled.
Keep a Log/Diary/Journal - RECORD IT!

================================

My son falls asleep right after seizure ends for an
hour or 2. When he wakes up, he complains of
headache.


Ans: This is 100% NORMAL!

[alivenwell]

Szs can happen in sleep or while awake. Unless somebody is endangered (like in a high place, in a swimming pool, not coming out of a seizure for over 6 minutes, etc.), it's simply best to let them stay out of harm's way and rest. I've experienced so many bad issues with schools and liability that it makes me really angry. They over reacted. I was denied college prep, playtime equipment, etc. Liability is something we learn really well after enough people treat us differently.
One thing I'll always be grateful for from my parents was a signed letter from a psychiatrist who simply wrote that I should be treated just like everybody else with the same opportunities (obviously not driving or something outside the limit of E). That single letter was referenced many times and helped me make it through school.
I hold several college degrees. If I ever encounter anybody with a disorder like this, I'll treat them like I would want to be treated. It's just the golden rule.

[Amy]

Thanks for your replies Robin, Meetz & Alivenwell.
Meetz - my heart goes out for you! I sincerely wish I am in a position to help you and such others during these tough moments, physically & morally. I feel very sad even to read your note. I hope you are on some effective medications that atleast reduces the frequency of seizures. My prayers are with you all.
And Alivenwell: yes, the letter from psychiatrist makes perfect sense to me.
I'm really proud of you all for your hard work, achievements in life & playing the tough roll of being a mom, working etc. Wow!!!!
Have you ever tried Homeopathy or Ayurveda? Ayurveda is Indian traditional herbal treatment. I have heard some people saying it helps with minimal side effects. I bet there are some practitioners in US too.
I tried Ayurveda for my child for sometime, before I got into allopathy a few days ago. One advice I heard from my dr was, to include garlic in your daily meal. When a person is having a seizure, if you crush a fresh garlic & have him smell by keeping near his nose, he is expected to come out the seizure right away or in few minutes. I experimented it with my son, with an oxygen monitor on. Though he didn't come out of it immediately, I did see spikes of O2 levels from 70, increased to 90+. He eventually came out in 2-3 min. And there are no scary side effects involved
Though Ayurveda helped my son, I couldn't proceed with it because he refused to take some of the medicines lately due to its bitter taste. If epilepsy has something to do with stress, then I feel strongly that "meditation" should be of real big help.

[alivenwell]

Amy, I've never heard of the allopathy or Ayurveda. However I do have several close friends from India who say they practice medicine very differently over there. Western Medicine practices seem to also be picking up more procedures and practices from Eastern Medicine. Recently, I learned about something called Laughter Yoga practiced in India. I'm pretty silly most of the time, but they claim it helps stress levels by fooling the physical body into 'thinking' there is no stress.

I also have a book called 'Epilepsy: A New Approach- What Medicine Can Do; What You Can Do For Yourself' which is excellent. That book had a reference to a singer who claimed that jasmine would abruptly stop a seizure (kind of like that garlic). If she felt an aura, she would open a small bottle of the jasmine, smell it, and have no seizure. It also lists all kinds of herbs that are also bad for epilepsy as well.


I do practice meditation, stress management, exercise, eating well, and any other method that really helps my epilepsy. I own a very active dog who loves to go for a walk every day. That walk really helps me clear my mind of stressful clutter and crap.

Fortunately, I've usually had that warning or aura which helped me find a safe place (can't fall from the floor!).

[Bernard]

Hi Amy, welcome to the forum.