Last 14 months

[brainwavez]

in the last 14 months I have had about 15 Grand Mal morning seizures. It has been extremely difficult to deal with. They usually hit me in threes. This weekend I was hospitalized after having a full blown grand mal seizure. They gave me Dilantin in my IV and got me stabilized and sent me home. We live an hour from the hospital that my neurologist works out of; we get 10 minutes from home, and I start seizing in the passenger seat of the car. My wife turns the car around and calls EMS to meet us on the way to the hospital. and 10 minutes after they finished gluing those electrodes to my head, I started having another seizure that they were able to record with their fancy EEG equipment. sigh, it has been really really difficult this last year, and the seizures are only getting more frequent. Dr. Aboumater is considering a brain surgery, but he wants to get 2 or 3 more seizures recorded on the EEG before that option.

Best Wishes to everyone else out there, and Best of luck in coping with your epilepsy. This is all very new to me. I was in denial about my epilepsy for a long time. and even now, I am depressed because the drugs make me dull as dishwater, I had to drop out of college, and my brainz are generally scrambled. I keep telling people the same things over again and I don't know, I just hope that this site can give me some piece of mind.

 

[epileric]

Wow

I know it's not fun to have tonic/clonic (grand mal) seizures but you were lucky to have one while on the EEG. I've heard people on this site refer to the "EEG Cure" when their seizures suddenly stop when they get an EEG. At least it can be observed & might give the doc a better idea what's happening in your head.

Do you keep track of your seizures? That's always a good idea so that you can see patterns or things that might trigger them. Of course if you notice anything different about a seizure mark it down too.

This site has a great selection of stuff including alternative treatments so get comfy & check out what we got. The people here are pretty laid back so feel free to ask any questions you might have.

In the meantime keep yourself healthy. remember that any kind of stress-be it physical, emotional will contribute to the probability of a seizure.

 

[epileric]

Also....

I moved this thread to the foyer so you can introduce yourself & meet everyone. Hope you don't mind

 

[brainwavez]

no, I don't mind at all. And you had some great ideas, I need to start keeping track of my seizures. Till this point, I have been in denial about them unfortunately. I don't remember them though, you know? so it is easy to ignore... when you're tongue isn't killing you. but this friday, and a week before new years both, I had seizures in sets of threes, and these are the first times that anyone has witnessed my seizures... apparently it is a totally horrifying experience. I feel so bad for my 9 and 10 year olds. So for all I know, I had 3 or 10 seizures every time until now. these last few times my body has been really sore, but no where near as sore as it has been in the past after waking up alone. it has been about 14 months since my first one, and I haven't gone 6 weeks w/o one since then.

side note, does keppra make you almost kinda dizzy randomly from time to time? That is what was just recently added since my last triple seize and i feel really off right now. uneasy.

Thank you for your great ideas and just for being here at all.

 

[epileric]

You're welcome...

I can only imagine what it's like to get epilepsy when older & have to accept it. I think I'd be in denial too. I've always thought I was lucky to be born with seizures though anyone without them thinks I'm a bit crazy for thinking that way.

Everyone reacts differently to different drugs but I know when I was on Keppra dizziness was one of the many side-effects I got. I also felt very uneasy too at first, then it evolved into insecurity at times but then that evolved into anger & aggression at times (very unlike my normal self). Be aware of how you feel or have a friend tell you if you're not yourself.

Here's something that might help you- just type the name of your med in the "search" box. http://www.drugdigest.org/wps/portal/ddigest

Also, I should have mentioned to keep track of what/when you eat, when you get up or go to sleep, & anything else you might think could effect your seizures. I do feel for your kids though, be supportive to them & try not to let them take on your pain. They might be able to help in telling you what happens during a seizure or even how long it lasts. They say that if a convulsion lasts longer than 5 minutes then it's is classified as "status epilepticus" & medical attention should be sought.

 

[alivenwell]

Hi! Welcome to our world! I am convinced that our methods of thinking could be a combination of psychological conditioning, some drugs as you mentioned and our own self esteem. Like Epileric, I had seizures since I was extremely young (for me it was 18 months of age), so I honestly do not recall life without epilepsy.

Like Speber, I am heavily into music because it really helps stress levels. And so many others in here try to cope with this by using humor. The thought that laughter is a best medicine may be partially true with this condition.

And, like others in here, I also own a great dog who's my best companion. She is accepting of me with or without epilepsy. We do a de-stressing walk.

Again, welcome. Please let us know of any new methods that help you improve your epilepsy. We are all open minded.

RobinN is a great person to ask about nutritional and neurofeedback techniques. Until I got on here, I was totally unaware of a lot of those techniques. I have added vitamin D and calcium supplements to my regimen of medications. Some medications cause osteoporosis. I am in an early stage of that right now and fighting it all the way with weight lifting like Hawke does.

So many people have done so many techniques with this condition. I personally started a log with all stressors, medications (levels, dosages,..etc.), seizures, external factors such as temperature, that time of the month, and any other potential factors that could trigger seizures. The more information you pick up about your self provides you with a higher power to fight this awful condition.

I've not been on keppra yet. I personally take Mysoline and Lamictal. Personally, I am a proponent of keeping track of whether one takes generics or brand name only. For me, brand name only has been a trick to control the epilepsy. Generics have too many different fillers and a pharmacy can give you a month's supply with multiple generic companies making the same medication. Those fillers can make a difference in how fast the medication is released into your system.

Personally, if I did not have epilepsy, I would not have become an accomplished pianist, held several college degrees in a technical arena and learned how to manage my stress with artwork and music. A lack of driving forced me to spend my time with some highly worthwhile endevors. You can spend a lot of quality time with your kids. I recall playing with boxes as a kid. Hopefully they can see your epilepsy improve over time and learn about it.

 

[brainwavez]

I tell you, keeping my own self esteem and self confidence up through all of this is proving to be one of the most difficult things to deal with for me. I know I read something about not talking about suicide here, but, how do you cope with those thoughts? I don't want to get anyone in trouble, I am just a broken man who is trying to get out of life alive. This whole experience has really shown me who cares about me, and who doesn't give a sh|t. My new girlfriend has REALLY stepped up and helped me; I have no problems referring to her as my wife; everyone mistakes us for a married couple that it is just easier to assume a married identity. I think that her and her kids are going to be one of the best/most therapeutic things for me and my sick brain. for a few years there I was getting hurt and betrayed by seemingly everyone in my world. After a falling out with my best friend since 5th grade, and he kicked me out of his house, is when I snapped and started seizing left and right. I just want this to all be over already. I want my brain surgery to be tomorrow; I just don't think I can handle being near useless and retarded for 2 years while waiting for all the info b4 going into surgery. It is so frustrating for me, and I am having much difficulty keeping myself happy/on track/on topic/keeping my balance, I was going to graduate with degrees in political science and asian history next semester, and now I can hardly carry on a conversation with someone. how do you deal with this, how do you cope with this?

 

[LivingFruity]

Welcome! I know that this can be a very scary and stressful time. I don't have epilepsy, but my son does. The last few weeks have been particularly stressful for us since his seizures returned with a fury one day after New Year's. He had to be medflighted to Children's Hospital because our ER was struggling to stabilize him.

One neurologist wanted to start him on Keppra. I spent hours researching the medication and determined that it was not the treatment method for us. One of the side effects to Keppra is suicidal thoughts and depression (in adults and children). A lot of what you may be feeling could be attributed to Keppra.

We chose to go an alternative route. I believe we know what triggers my son's seizures now, and we're able to control them through proper rest and diet. He's been seizure free since January 2, 2009. Before that he was seizure free for 19 months straight. His last episode was most likely caused by missing sleep over the holiday and eating holiday foods that his diet restricts. We just have to be more cautious in the future and make sure he sticks with his sleep and diet routines.

Keeping a journal of eating, activity, and sleeping patterns may help you to find out what could be triggering your seizures. Once you know this, there may be alternative methods that could bring these seizures to a stop, or at least reduce the amount of medications you need.

The forums here are full of information. Take a look around. Ask questions. Don't give up. I have faith that you'll find the answers you're searching for and can return to a normal life again.

 

[Graidyn]

Brainwavez- though I am new here as well I feel that this site has helped me tremendously in a very short time. I do not have E to the extent that you do, but I did go through a period (and still do at times) where I feel that I am simply an unfair burden placed on my loved ones. You can read the short version of my story in the Foyer under my name but I lost my job in which I was making more than my fiancee, and was unable to get disability due to the first moronic neurologist I saw. He told me there was nothing wrong with me. I never imagined I had epilepsy, and actually didn't even realize I was having seizures. I just recently was diagnosed with E and just a couple days ago was finally approved for Disabilty, I still have not received any money though. Knowing it's coming is an unimaginable relief. For 2 years my fiancee has had to support our family of 4 and ALL of our bills (On less than half of our previous income), our animals, worry about me, take time off from his job for my appts since I can't drive now(which we couldn't afford) and the stress has been horrendous for him and me and even our children though we tried to hide it. Friends and family have stopped coming around or decided that I'm "making it up" cause I often seem fine. Yes, there were MANY times I thought just maybe he'd be better off without me, but I said simply "I'm sorry for not being what you thought I was" and he put it in clear, concise perspective for me, my Chris did. "It could have been me. I could be the one that got this illness and needs to be cared for and needed your support and help and love and I know, for a fact, that if it was you wouldn't love me any less, wouldn't turn your back on me, and wouldn't walk away from me. You would do what needed to be done and you would look at me the same and you would wait for me to get better and even if I didn't you would learn to love the new me." And he does. Completely. That ended the days of me feeling sorry for myself and started me on the road to "Learning to love the new me". He's taught me to find humor in the things that used to make me cry, because as he says, I'm only 28, I have an awfully long time to live with this.......
If you ever need anyone to talk to feel free to message me, I'll be happy to listen to you anytime ((HUGS))

 

[skillefer]

Hi BrainwaveZ! Welcome to CWE. As you can see, a great group of people. Ok...the first thing you need to do, is start keeping a journal..and here's what you need to write down:

1. Food and drink (what, when, and how much)
2. Sleep ( how many hours per night, and any naps)
3. Stress (Sounds like you're under alot....)
4. Odd feelings..(deja vu, odd smells, odd sounds, odd sights, migraines, etc. )
5. Any seizures (how long, what you were doing before it happened, where you were when it happened. )

Ok...after you've collected that info for at least 2 months, go back and look at it and see if you notice a pattern....for example, do the seizures hit after you not getting enough sleep? Is it happening after a specific food? Etc....And yes, specific foods can trigger them in some people.

A short list of some triggers would be :stress (which you have a lot of...), lack of sleep, too much caffeine, food allergies, and certain lights or patterns. This is just a short list and by no means a complete list.

Next, if you're drinking lots of coffee, cut back and then quit. And if you're drinking energy drinks, quit. Caffeine is a stimulant. That's the last thing we need.

Finally, let's look at epilepsy the way the doctor's do. First of all, it's not that rare..according to a 10 state study done by the CDC 1 in 100 people has it. Approximately 3 million people in the US have it, with about 300,000 people being newly diagnosed each year. So you are by no means alone. It's time to take the bull by the horns. E is not a death sentence. You can still dream, have, goals, and still be a fantastic mentor and parent. Show those kids that you are not your medical condition. It does NOT define who you are. Think of it as being like asthma or diabetes. A medical condition to be dealt with. You are you. You have the same likes and dislikes as before. The same talents. You have goals and dreams. Oh, and you just happen to have E. And remember, you're not alone. So feel free to ask questions, chime in, or just vent in the padded room. Heck, we all need a place to vent sometimes. I hope this helped.

 

[Bernard]

Hi brainwavez, welcome to the forum. :hello:

Perhaps this will help: http://www.coping-with-epilepsy.com/forums/f22/proactive-prescription-epilepsy-1254/

 

[brainwavez]

here's what you need to write down:

1. Food and drink (what, when, and how much)
2. Sleep ( how many hours per night, and any naps)
3. Stress (Sounds like you're under alot....)
4. Odd feelings..(deja vu, odd smells, odd sounds, odd sights, migraines, etc.)
5. Any seizures (how long, what you were doing before it happened, where you were when it happened. )

Ok...after you've collected that info for at least 2 months, go back and look at it and see if you notice a pattern....for example, do the seizures hit after you not getting enough sleep? Is it happening after a specific food? Etc....And yes, specific foods can trigger them in some people.

I hope this helped.

Thank you, this is very helpful and I will start keeping a journal to cross reference for any patterns.