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Marisaja posted:
This is the first time I have been on this sight,It is 1:25am and I am @ the hospital doing a prolonged sleep deprived eeg. Will be 31 yrs old in 2 mths and I have lived with this since I was 13. I am from a very small town and when ever I seize I hate to say it but I am the talk of the town, I Still feel very embarrassed about this and unsure. I have 4 boy's ages 1yr,4,5 & 12. I really hope I can get some answers while I am here. I have only been able to obtain a license twice in my life I have no income other than my husbands and we struggle (that's putting it mildly) I was just denied my SS and appealing my case with a lawyer. I am taking 1000mg of Keppra 2*day and 150mg Lamectol once a day, I am seizing (what I have always known as Gran ma) about once every 2mths butt I also have alot of little strange things that happen weekly like feelings of confusion being lost not knowing what I am doing or for what purpose, My Meds give me very bad mood swings I have been taking the Keppra for almost 6yrs and the Lamectol for nearly 2mths. I sometimes get a very weird out of body experience best way I could describe it would be like Deja Vu or feeling like I am living in a dream I then get flushed(very hot) dizzy and lightheaded afterwards I am absolutely exhausted. I was just wondering does anyone else feel symptoms like this? Thankfully I have a wonderful husband who is very protective and understanding and comforting.We are trying to learn more about this condition and hopefully someone some day will have some answers for me and my family.
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dancer86442 responded:
Hello Marisaja,

Welcome to Epland. (My name for this site/page. ) I do hope your tests give you some answers. Keep in mind that 65% of those w/ Epilepsy have 'no known cause'. We have lots of Resources, if you care to learn more. Took me a looong time to wake up & start learning. I assure you, EP wasn't nearly as scary when I got to know more about it.

If 'mood swings' are an issue ask your neuro to take you off Keppra. It is infamous for it's affects on moods. The DejaVu you described is another form of seizure. So, you may need another med, anyway.

You can read more about me by cliking on my user ID. I'm here for you. Rant/rave, ask questions, answer other posts. W/ time, it does help. HUGS!

Love Candi
 
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dancer86442 responded:
Hello again,

How are you holding up? Any activity?

Love Candi
 
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spark237 responded:
Hi, Marisaja,

I'm sorry to hear you've been having so much trouble. My brother has had drug-resistant epilepsy since childhood. I'm no medical professional, but it sounds to me like your deja vu experiences could be mild seizures, especially since you're exhausted afterwards. It's possible that you have two types of epilepsy, and in fact I just learned in a seminar hosted by a nurse that sometimes auras are actually a different type of seizure that precedes the main one. Perhaps a different medication can help with these other seizures if indeed they are seizures.

Your feelings of confusion may also be symptoms of tiny seizures that happen without any other outward manifestation. My brother has very severe short-term memory problems. I was just informed by a doctor specializing in memory that he could be suffering small seizures in the memory part of his brain all the time, which disrupt the way his memory works. So there can be a lot of brain activity going on "under the radar" so to speak, that has to be investigated. Please let us know how your EEG turned out?

All the best.
 
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spark237 responded:
Hi again, Marisaja,

I just noticed this link on the sde of the WebMB page -- it describes all kinds of seizures, like "Alice in Wonderland" types. Very interesting! http://www.epilepsyontario.org/client/EO/EOWeb.nsf/web/Seizures

Best regards.
 
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happylady22 responded:
Hello, how are you doing? While reading your post, I was amazed how similar our stories are. I too, had the Deja Vu auras. I had those a younger child quite frequently. The when I was 16, my grand mal seizures started. I know now from my dr., those deja vu auras are petit mal seizures. In the beginning my grand mal seizures happened every couple of months or so, but as I got older they became more frequent. I also learned from my doctor that my seizures are hormone related, so if I am ovulating or near my period, I am more suseptible. I have been on so many medications, I agree with "dancer86442", in the statement Keppra causes mood swings. While I was on that I was not a fun person to be around! You also stated you live in a small town? Make sure you have a GOOD dr who knows his field well. Having a dr who is still new to neurology or is not quite well practiced will not help you at all. You need to find a good dr. you are comfortable with, who is compassionate. Epilepsy can be difficult, and knowledge and compassion is key!

I would be happy to be someone you could talk to. I know what it is like to be confined to a house, not able to drive let alone work, 3 small children (I had 4). That does nothing for someone's mood either. I know it stinks! But like you, I am blessed with an awesome husband, who is kind and understanding. Again, if you need to vent or anything. God Bless You!
 
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jillybean1971 responded:
Hello and I can tell you that the Deja Vu for me was the "aura". An aura happens before a seizure or sometimes just the aura and no seizure. It was a dreamland for sure. I have been told by my neurologists that an aura is a small seizure. My seizures started at age 13 also and no medication or brain surgery would stop my complex partial seizures. Finally a woman neurologist helped me and noticed that menses and ovulation played a role. It is catamenial epilepsy. Most of my seizures happened during menses and ovulation because of hormone unbalance. Using hormone therapy- "depoprovera" with Tegretol and Depakote finally ended my seizures in 1998. I have to use Depo every month, 200mg, to keep the hormones balanced. Hopefully, you are seeing a neurologist and there is a lot of info on efa.org. That is Epilepsy Foundation of America. I've had to look on there many times to do my own investigating. Never used Keppra. I never was able to receive a drivers license until my seizures ended-I was 27 then. It took 14 years to control my seizures but at least there are a lot more advances today in treatment. Good Luck Jill
 
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klmcq responded:
You are not alone. I had my first grand mal seizure last sept. I had just gotten out of my car, along with my two grand sons. One minute I was looking at their homework, the sun was shining and the next I was across the room, it was dark and the paramedics were there. After a second one a month later, I had those feelings of being in a dream, Deja Vu and feeling like there was something I should be remembering. Trying to remember whatever it was would bring on a small seizure so I stopped trying. I don't feel flushed but get teeth chattering cold, I have never been one to be cold. But I do have to lie down when I get cold. I find that the word I'm looking for is just out of range of my brain. I am lucky enough to be able to work from home but sitting here looking at the same 4 walls day after day is making me a bit looney. I'm still looking for the answers of why this happened to me at the age of 49 and how I can make it stop. I agree with others on Keppra, I found myself crying all the time for no reason at all. The feeling of not being in control is the worst, I don't know how to deal with it. After almost a year, I feel almost normal, so don't give up hope.
 
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Trembles responded:
Marisaja, I'm so sorry you're experiencing all this. I wish I could offer more help, but what I can do is recommend that you talk to your doctor about your dose of Lamictal. The dose that has worked like magic for me is 200mg twice a day. The doctor may be raising your dose of the Lamictal slowly and lowering your dose of the Keppra slowly, to give your body time to get used to the change from the one to the other. I hope so, because with symptoms as strong as yours, 150 isn't going to do it. The other symptoms you talk about may be caused by small seizures called petit mal (puh-TEET mahl) or absence seizures. The right dose of Lamictal may help with these too. I'm not a neurologist, but I've learned a few things because I've talked to a lot of them.

As far as everyone talking when you have a seizure, it's the same way in my town. I was embarrassed at first. Now, when I see someone I know and they ask how I am, I say something like "oh, much better since I had that big seizure last month." It was hard at first, but it's surprising how much it helped me realize that none of this is my fault, I was born this way, and I have nothing to be ashamed of.

Epilepsy can be devastating to family life, I know. All I can do is make sure my wife knows how much I appreciate her help and her understanding. I tell her all the time.

Yes, it's frustrating that science doesn't have more answers for us. People say "everything happens for a reason," but that's a very insensitive thing to say to people like us. There's no reason for our seizures. It's not our fault. We were born this way. Maybe we'll never know whey they happen. But we do our best to go on with our lives. We try to smile when we can. That's all we can do.

I hope the right dose of Lamictal helps, my friend. Good luck.
 
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stlsb5 responded:
Hi Marisaja, The first seizure I had was in my 30's. It put me in a coma for 2 weeks. As a bonus it caused irreversible brain damage. When I woke from the coma I did not know I had 2 boy's and a husband. The seizure was a grand mal I also have another type of seizure the is triggered by having the grand mall seizures. Just this week I went into the hospital and had what is called a VNS Therapy Device put in. Just so you understand I am not a doctor. I don't know if it would work for you. That said they are taking me off all but a very low dose of all my seizure medications. It is sort of like a pacemaker in that you get a mild shock when it goes off. The doctor that puts it in will not be the doctor you are seeing. They put it in but they don't turn it on until 2 weeks after. They start it off on a very low (shock) after they are comfortable with your setting you will get a device that looks like a watch but it is what you wave over the implant to make it work before the scheduled time if you need to. Your tired all the time because of the dose of medications your on (they do know your a person not a horse right) That is also the reason of your out of body experience's. I have been there too. Walking into things that are there, stepping over things that are not there. Since you live in a small town I am guessing you have to go to the bigger towns for a hospital and things. This is the phone number for Cyberonics 1-800-332-1375 the device manufacture they should be able to give you some Dr. phone numbers where you are. Better yet have your Dr. get hold of them. The procedure only took about an hour maybe less, you go home the same day. One more thing if the doctor you have will not help you check into this, it is because he won't make money on long term cures and get bonus's from the drug companies,
(just in case you don't know doctors get kick backs from drug company's). I hope this help in some way.
 
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DUKE MEDICINE
Rodney A Radtke, MD responded:
Marisaja,

Sorry to hear of your problems. As noted in several of the posts, symptoms of deja vu, or out-of-body experiences may represent a type of epilepsy. The auras or "feelings" represent what doctor's call simple partial seizures. If they progress to where the individual loses awareness or stops responding then it is a complex partial seizure. If these seizures progress they then can lead into a tonic-clonic seizure which is also sometimes called a grand mal seizure. Many people with the big grand mal seizures also have milder seizures that resemble some of the experiences you describe. So you should be sure to discuss the milder events with your neurologist.

Hopefully, the medicines can control your seizures. Lamictal (or lamotrigine) is a good medicine and you are presently on a low dose so further dosage increases may help (carried out under the direction of your doctor). Lamictal is also know to be a mood stabilizer and may help with your moodiness. Keppra on the other hand, may make moodiness worse. You need to work with your doctor to find the meds that work best for your seizures and don't have unacceptable side effects. One of the posts mentions the VNS. While the vagal nerve stimulator is an effective treatment for seizures, it rarely stops seizures completely and is primarily used when nearly all the meds (and epilepsy surgery) has failed.
 
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cushla69 replied to Rodney A Radtke, MD's response:
Sorry,I do not know how to start my own discussion with you Dr. Radtke.
SEIZURE OR NOT cushla69 posted:Back in March I, while shopping I had this sour taste go all over my body, I felt sick, light headed, and my chest hurt just a lil. Went to ER and they hooked me up to heart machine. Everything was fine. Went to heart doctor , they said it was syncope.(fainting spell). Said if it happened again to just lay down and it would go away like first time. Then June 4th, came home from work and sat in recliner and that same acid taste went all over my body. MY daughter said I started shaking, trying to throw up, and then I passed out. She called 911. At hospital, they admitted me under seizure like activities. They checked me for incephlitus, brain tumor, brain swelling, and stroke. They put me on zantac, decatron (brain swelling), and keppra.Said they thought I had synope.after coming out of hospital i started going to another neurologist because the doctors at hospital couldnt decide on anything. Showed new doc my reports from hospital, they said MRI was inconclusive. The spot they thought they seen, disappears when they move the film. so they sent me for pet scan. Mine showed up really light warm, almost cold. After going over the reports, he let his partner look at them. his partner said that it looked like and infection coming from somewhere to him but wanted to redo MRI in 3 months and said it didnt look like I had a seizure, but the doctor said differently, that he thought it was something. Noone can say rather I had a seizure or not. But , as of me being a school bus driver, this I need to know. This doctor says he dont know if I did or not. Hospital never said anything else about it. But this doctor said I had no swelling of brain and immediatly started weining me off decotron, said I never have been put on it. Then he set me up for sleep deprived EEG and said this test would prove if I had seizure or not. Also, he went ahead and started weining me off keppra. He said I didnt have to take it anyway. If he cant say rather I had one or not, he still choose to take me off of it. After EEG, he said I had slowing of brain waves (first time I ever had this test done) and NO short circuit. also said he didnt see that I had a seizure but was still going on the idea that he does not know rather I had a seizure or not, so therefore he wont write me a note to be able to drive. I need to know what these two things mean (no short circuit and slowing of brain waves). He wrote me a note to return to work but said DMV would have to release me to drive. DMV has not took my driving previliage because it has not been determined if I had a seizure. During all this time since being on zantac and watching everything I eat I have felt better than I have felt in long time. I did have upper GI done, i do have acid reflux. Will u please give me ure thoughts on this. Thank you very much.
 
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marieh9 responded:
Hi Marisaja,
I don't have those symptoms but have you ever read The Spiral Staircase by Karen Armstrong? It is very good and she had seizures. I recommend it for you.
mkh9
 
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sunshine10979 responded:
Hi Marisaja,

I've had those same seizures since I was 14 or 15. I would experience the same symptoms you did but I didn't know that they were seizures until I was 25 when I had a grand mal seizure at work and ended up in the hospital for a week that I have no memory of. I've been on 1000mg 2 times a day since and I've been good. Sometimes when I forget them my head feels a little funny and thats when I remember that I didn't take my pill in the morning or the evening. After my head injury my memory was almost completely gone and my ex husband would get mad at me for forgetting something. My current boyfriend does the same thing but my memory is not where it would be if I hadn't had the head injury.

It's nice to talk to other people who are going through the same problems! If you have any other questions or just want to talk you can message me.
 
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fanceace replied to Rodney A Radtke, MD's response:
my name is angie and i have been an epeliptic since i was a teen now here is the question meds no longer work for me if i take med's i have fewer but thay last longer and i stop brething if i don't take med's then i have more but i don't stop brething keep in mind i fave 2 small kids one is 2 and the other is 3 but she two is and epileptic so what should i do ? my kids dad said i should go for med marijuana but i don't know the efects that i could have on me he only won'ts me to go so that he can use with out getting in trouble ! ontop of that if i do go for this he will just smoke it all up so i am forst to have his mom keep it at her house for me ! what should i do help wanted i don't even know if this will work for me or if it is just a wast of time and money! dose anyone have any idels on what to do in this sitution or am i the only one faceing thing this alone ?? dose anyone know the efects of weed in an epeleptic ?