Nice to hear you are feeling better. If I may ask, did these effects happens just after a small time of taking your meds.

Why I ask is because at one time I was on tegretol and I had just about all the side affects you said. It only occur in my morning dosage, but as I took my night dosage I was going to bed. My neuro took me right off because of the effects it gave me.

I am happy to hear you are getting blood levels, hopefully your neuro see what is going on.

Thoughts and prayers.

Darlene

Yeah after about 20 min of taken my meds I immedetly had those affects. I waited 3 days befor telling my neuro and then I let him no and he told me to try and hold off a few more days hoping it was just side affects and it was. He wanted me upped to 1200 mg but goin up to 1000 was enough for me to adjust to! I dont know if I would handle it to well to keep increasing it since this time just to get up to the 1000 mg dose was hard enough. The reason you have to watch with these side affects is because it can be a sign that your toxic on it.

Hi tos8,

How have you been doing? When you see/speak to your neuro again you might want to tell them to do a DNA blood test on you so they can find out what AED's (sz. meds) will help you the most with the least side affects. Take my word a lot of Drs. have told me they know nothing about DNA blood tests but that's only because they want to make some extra money putting you on as many AED's as they can. Don't let the Dr. fool you they all know about DNA blood tests and my advice to you is to get one done to find what AED's will help you the most. Here's wishing you well and May God Bless You!

Sue

Hi sue, Back to having those side affects again, not as bad as befor, but its still yucky. Im still waiting for my blood work results, hopefully in the next couple of days I will know. 2 times now in the past couple of days I can tell a sz. was about to start and we tried valium befor it did and that seems to work. Whats a DNA blood test? I will defently mention that to my dr when I see him in a couple weeks.

Hi tos8,

DNA is what shows in our blood molecules of our genetics and other structures of our body it's hard to explain go to the medical dictionary and it will give a better explanation. The main thing that helps by having a DNA blood test done is it can match up our body chemistry to the right AED's (sz meds) to take with the least side affects. By doing this you don't have to keep trying different AED's to work to control your sz.
I'm happy to hear that the valium is working for you,take note if your sz. happen when there's a low pressure in the weather, your sick, or if your hormones are changing, also take note if you're under more stress and are more tired before the sz. these are all things that can trigger sz. for people. Here's wishing you well and May God Bless You!

Sue

Whew these sz. are ruff! They are very hard on my upper body! I had a sz. last night, i was in the basement heading to my room to go to bed and as soon as i got down the stairs i knew right away i was going to have one so i sat down on the chair and it started out as a staring one that im aware, but i can never talk or move, and then next thing im on the floor, and thats when i could hear every thing and i was so hoping for some one to come, it wouldnt stop, i couldnt get it to stop. Finally my brother saw me when he looked down the steps, apprently i had been there a long time, my breathing was very heavy and fast and its never that way, im usally very silent. it was 1:30 am and i defently had went down there alot earlier then 1:30, time must have flown by faster then i thought when laying there. My neuro is out of town, so we havent been able to get ahold of him. I dont know what else i can do.

Hi tos8,

I'm so sorry to hear that you had another sz. if this sz. lasted longer than 15 min. you had a status sz. which is very dangerous and can lead to more brain damage. If this ever happens again where you sz. lasts longer than 15 min. you need to go to the hospital ER and the Dr. will give you an I V of med to stop the sz. I'm wondering is your heart okay? You should see the neuro. whose on call for your neuro and get some tests done. My advice is to have a veeg along with an MRI by doing this he Dr. can see what's going on and what's triggering these sz. I wish you the best of luck and May God Bless You!

Sue

No one was there to call 911. My mother was about to call 911 and then i stopped. It was defently well over 15 min. It was probley more 30+ min. Im not always going to have some one around me, like last night. What do you all do when your alone? and even when your around people how do you make them aware of it? Because mine makes it so i cant move or talk, my neuro said thats just the areas that get affected.

TOS---

When to call 911 varies from person to person and the TYPE of seizure the person is having.

You also have to factor in if the person is hurt, pregnant, has another seizure shortly after, etc.

IF in doubt, always err on the safe side and call 911 or go to the ER.

Having said that, over time you will learn what is "normal" for you in terms of length of seizures, severity, etc. It is not uncommon for my simple partial and complex partial seizures to last much longer than 15 minutes. However, in my case, this is not an emergency. But for some people, it definitely is.

Also, there are some medications you can take at home to help stop cluster or status seizures. They are known as Rescue or Emergency medications. I use Ativan as my rescue medication if start to have severe clusters, if my seizures last longer than normal, if have several without much of a break between them, or if they are in any way not my usual. Each doctor will have their own protocols, but its definitely something to ask your doctor about. Common rescue meds are Ativan, Diastat and Klonopin.

The most important thing is to communicate with your neurologist. Make sure he/she knows how long your seizures are lasting. Ask what his/her protocol is about ER's, if you can have a Rescue med, what things you need to watch out for, etc.

Hang in there !

L2L

I am supposed to go to the ER if they last longer then 15 min and my breathing would get labored. Most of mine last between 5-15 min and my breathing is ok. What worried my mother last night was my breathing was very heavy and fast, so she knew it turned into a status. There estimating i was down there for about an hour. We are goin to tell my neuro i need an emergency med and another med along with my tegretol because obvisly its not controling them on its own. Last night she gave me liquid valium and thats what got me to stop after about 10 min. I just hate not being able to get help when i know they are coming on! And i dont know what else to change that.