New, ADVICE PLEASE

[stilldancing_98]

LOL, Once I did it in the day, and threw my purse across the public bathroom.I didn't even realize it was a seizure until later. I drop keys and little stuff all the time.I think if I were to pick a seizure type the myoclonic would fit my personality the best. A little out of the spur of the moment type. I try to keep a little sense of humor about myself.

[ziggidypoo]

Been tough day - so just listening and caring.

[stilldancing_98]

Hi Zig, how are you?

[ziggidypoo]

Hi Zig, how are you?

I never like to look at the negative, but, it really has been a bad rough day with E. Even packed my emergency bag of extra clothes, cellphone and charger, etc. because I honestly felt in my innards it was going to be another ER trip. I need tomorrow at my neurologist visit get her to check my blood sugar and blood sodiums levels. Something just don't jive right. Feel better since I drank salt water and ate a meal, went shopping and had a HUGE craving for dairy products and ate it all - not tired exactly, not sleepy exactly - just "not right". I appreciate so much more than you could ever know YOU asking about ole Zig. People here at the facility bombard me with needing to have an ear for support, but I only have ONE who listens and understands. Carey does his best, but only ONE T R U L Y understands what's in me.

My anxiety pitches a fit now and again.

MY PTSD remembers somethings sometimes that makes me feel yucky.

But E - well, it's the pits.

I feel like a guinea pig - trial and error on the meds.

Sigh, I'm ok, just a rough day - tomorrow will be a GLORIOUS new day!!

I'm confident.

[walksalot]

Good thing you didn't throw your purse at someone, huh?

[stilldancing_98]

That was so funny.You feelin better today zig?

[super]

For me, because seizures not fully controlled taking Dilantin (as monotherapy), have beeen on Keppra for 1 year. Reacted badly initially to Keppra particularly as the dosage was increased to 3000 mg per day. This has been reduced to 1000 mg per day and tolerable at that level. Still taking Dilantin as well.

Keppra can have awful side effects; but helps me to obtain rem sleep which has been absent from my life for some time (caused by sleep apnea). Keppra can cause exhaustion requiring sleep during the day, as well as paranoi, deep frustration and depression to some degree.

Keppra (for me) controls major seizure activity whether on 10000 mg or 3000 mg per day. This is hugely important, and I have been major seizure free for almost 1 year. However absence seizures thought by me to be caused by Keppra are kept under control by a slight adjustment of Dilantin dosage (ie additional 30 mg at night).

Currently specialist doctor has no answer for the latter, and agrees Dilantin may be the cause of long term side effects, and has therefore introduced Valpro to the drug regime. I feel like a walking drug store.

I have confidence in my neurologist which is important. Would not entertain the notion of replacing drugs with alternative therapy, and feel am gradually reaching satisfactory treatment that completely controls my epilepsy.

[drarvindr]

hi and welcome. i agree with bernard abt the keppra and B6. Re: the sleep tics , many people have tics when they sleep. I noticed it in my girlfriend and freaked out one day , but then i read it up and hypnogogic tics (as you fall asleep) are considered normal , especially when you're really tired. Ask your husband's mom if he had the same thing when he was a kid. Remember that a clear EEG does not mean no epilepsy. they treat you anyway. Try to isolate particular triggers that caused him to seize on those occasions. Try and find some common denominators and if you find any , do your best to eliminate them. The side effects of drugs are multiple and variegated , as each person is different. It may also be diet related. If he is on any other medication , check with your doctor that there is no conflict between them. Please feel free to ask about anything else. Hope he gets better soon.

[paradise survivor]

Welcome!!! I have come to realize fear is the worst part of this whole thing-As hard as it is on the one seizing, those who love us suffer even more. We are here for you...there is much to learn and this is the best place I have often learned more here than in my neurologist's office. I had my first seizure when I was 37. I have more than enough material for a mini-series but needless to say I couldn't do it without the love and support of my hubby and my kids-funny how people can rise to the challenges...

[stilldancing_98]

Hello Doc. Those are the seizures I have. My epileptologist explained to me when my son started have myoclonic seizures and when I did, That some are normal and they come from your spine like when you are falling asleep or waking. It's if they keep on happening throughout the day or in deep sleep . I have both.Lamictal made those seizures worse. Even though it is usually very good for myoclonus. I don't know "all" of the tech. words. but I can keep up. LOL I can usually stop these seizures by waking alex up or I wake up. If they won't stop it's time for Lorazepam.Well that is my experience. Except that my brother did have an eeg that showed nothing years ago.

[RobinN]

Robin, I would really like to get more information on the supplements your daughter is taking, can you remind me how we can look into this? Alex was to see a Naturopath back in June, but she didn't really have many suggestions.
Kathie

Neurofeedback - Rebecca's Story

This is what she took at the most, but I have recently cut back on some because I am working to flush her liver of toxins. It is my belief that this needs to occurs before her hormones will be in balance again. I am not sure if this will occur while she still has metals in her system, but the liver needs to function at its best before I can approach chelating the metals, otherwise it will be too stressful on her system. Slowly her pH numbers are getting down into the normal range.

It was suggested that some of the vitamins and minerals would become more effective as the liver healed so that is why I cut them out for the time being. Not knowing a proper dose would not be helpful.

[Meetz1064]

welcome to CWE, tinkle. I see I've been lacking in my duties, here.

This home Mr B has made for us is a great place to be. Lots of nooks and crannies to check out.

First off, in regards to Keppra. If he starts to go through that lovely "KeppRage" that you've probably read about, Vitamin B6 I believe is what helps quite a bit.

Second, even if an EEG comes back clear, that doesn't mean your hubby doesn't have E. My EEGs were clear for over 40 years. And TRUST ME, I HAVE E.

If you're husband's jerking the way you're describing at night, the others are probably right--it sounds like myoclonic seizures. Check out these 2 links:

http://www.epilepsy.com/EPILEPSY/TYPES_SEIZURES

http://www.epilepsy.com/EPILEPSY/seizure_myoclonic

Start keeping a journal of EVERYTHING. OK, it's a pain in the ARSE. But it will be worth it. To you, and hubby, AND the docs. Why? Because it will eventually help find a pattern. Track what he eats AND drinks--when & how much, sleep--when & how much, same thing for TV, computer, and video games....I think you get the idea.

Lay off things with aspartame in them. Cut out the caffeine--slowly, of course.

RobinN, our nutritional guru, who posted to you first, I think, has had a great deal of luck with controlling her daughter's seizures nutritionally. So have I. As have a lot of others. It's not a coincidence. Yes, I AM on meds, too. BUT, I have been through ALL the meds available to me. As long as I stay on this diet, AND on the meds, I am OK. Any other way, I am SCREWED.

Good luck, and take care,

Meetz

[ziggidypoo]

Get this - after my LAST bout in the hospital, my neurologist says she made a big mistake taking me off the triliptal, now that my seizures are back. So, she upped the Keppra, upped the Neurontin, and started me back on Triliptal, and will regularly check my blood sodium and blood magnesium levels. No seizures, yeah, just super duper sleepy.

[walksalot]

Hi Ziggidypoo, I'm sorry you got screwed up for awhile, but I'm glad you're OK now.
Doctors don't always know all they think they do.

That's why Doctors "practice" medicine istead of guarantee it.

Don't you sometimes feel like a guinea pig?

[stilldancing_98]

Well hopefully you will get over the sleepiness.How is everybody doing now?We are all different. I guess that is why we feel like the guinea pig huh?I spoke with the Dr. again and we are going to try the neurofeedback . Waiting for a couple of referrals for my son. And then we are on are way. Don't know where but we will.

[chrys]

i get myoclonic and generalised tonic clonic seizures. tegretol kept the latter under control but not the former. i am now on keppra and the myoclonic seizures have stopped completely but the tonic clonic seizures i get about once a month. i agree that the myoclonic seizures are terrible. that is why i chose rather to keep them under control and get a few grand mal seizures. i've injured myself numerous times. eg. when you have the jerks your arms and legs jerk up and you throw whatever is in your hands straight into your face...like a hot cup of coffee!
keppra has terrible side effects for me though. the emotional side effects are the most salient. depression and memory loss are the worst. i wouldn't suggest using it unless it's your only option.
my epilepsy is also idiopathic. i know how frustrating it is to hear the doctor say that technically nothing is wrong. how do you fix something if you don't have a clue what is wrong??
to the lady whose husband has started getting seizures, since i started taking keppra i have been dreaming a lOT. maybe the movements he is making is a really active dream. also, if i feel like i might have a seizure i send to keep my teeth clenched. this helps avoid the tongue biting. i know how painful that is!!! and the headaches after....take condeine!!!

[stilldancing_98]

Oh Chrys. You poor thing. Welcome here. I have been there, not that bad on the myos. But I do know what you are saying. I will send you a private message. Teresa

[misseschris]

So, i started Keppra-Levetiracetam about 6 weeks ago and was slowly weened off the other drug I was on (Tegretol). I've had two seizures (tonic clonic) during this time. One of the side effects is a tingling sensation the others include irritability hair loss depression headache nausea (reading the possible side effects page from the pharmacy). I've experienced my left eye twitching started off slowly now its happening all day long-other than that I've done pretty well with this particular drug only...
Good Luck! Stay strong and motivated, be encouraged.

[misseschris]

I forgot to mention that I take a few supplements as well including B6 B12 and a multivitamin