Epilepsy Community

I'm sorry to hear what your going through. I have epilepsy too. My mom and my aunt have epilepsy too. I can say from experience that Neurologist are like other doctors, you can get some that are not very good. But, I wouldn't recommend anyone to take dilantin. My mom took that when I was little. The doctor took it off her too soon, instead of gradually taking her off of it. She had a seizure so bad, she nearly died. Dilantin is a very addictive medication. Also, what I never learned from Neurologist is that anti-seizure medication takes the calcium out of your body. I would recommend Calcium vitamin. You do start to know when your going to have a seizure. Everyone's seizures are different and the severity of them are different. I would wonder about you is did you ever have a head injury, anytime in your life? Good luck!

I've never had a head injury in my life and hospital tests revealed no problems.

I also heard read that Dilantin causes erectile disfunction. I'm just crossing my fingers and hoping that two years wont be too damaging too me. I will take your advice on calcium.

Hello Always,

Welcome to Epland AKA Epilepsy Exchange.
Let me start this by saying over 65% of us have 'No known cause' for seizures.

First: Get another opinion. Although Caffeine & Stress do Not cause seizures, they are what we call 'Triggers' for seizures. Confused? Here is some 'homework'.
http://www.ehealthmd.com/library/epilepsy/EPI_causes.html
As for alcohol, unless you have a Low tolerance for alcohol, I would say it triggers seizures Only in large quantities or while taking w/ your Dilantin.

OK, you say your mind is on your Diet. That's good, cuz, some foods/additives can trigger seizures too. Gluten & aspartame are 2 leading suspects. Abnormal Sodium levels can trigger seizures, also. Advice, Start a Journal. Info as to what to include under Tips. Also, chek out epilepsy.com for their online 'seizure tracker'.

As for Vitamins, here is more info. Chek the label on all Vitamins/supplements you use.
http://health.yahoo.net/articles/nutrition/dangerous-supplements

Do some More 'homework'. Learn all you can about Epilepsy Causes, Types & triggers. Our Resources has a Bunch of Info. Just keep in mind: Epilepsy Is a never-ending, forever-learning Disorder. So, try to keep up w/ any & all Old & New Information.

As for having 'weird' feelings (possibly Auras) & a seizure the other morn. Definitely seek another Opinion. And get Off Dilantin. You are well over the 'trial & error' phase on this med. (4-6 weeks) If it was working properly You Would not be having weird feelings/seizures.

As for your age, Seizures/epilepsy does Not discriminate. Yes, they occur More often in Infants & the elderly, but, Anyone can experience seizures at Any Age.

Keep talking w/ us. Know we care. Update us when you can.

HUGS! Love Candi

I am sorry to tell you the test are inacurate at best I have had sz's for forty years and not one test gave them answers I am like you disabled fully this year and denied soc.sec. dis due to there doc's the feelings sound like an aura and you need to do a journal and take it to the doc and don't worry many of us have a normal reading they haven't developed the perfect test yet

Thanks for taking the time to respond guys, I'm sure you must be repeating the same information over and over to people new to the forum. Thanks Candi for all the good information and the 11 smiley faces.

A couple months ago I asked my neurologist about changing my medication, and he literally shrugged it off and changed the subject. I'm going to get a new doctor and new medication!

I forgot to mention in my original post that I had been sick with a terrible cold for four weeks strait when I had my seizure the other day. I thought I was over it and went for a vigorous hike that day. Maybe that provoked it?

Hi Always,

I don't mind the peat/repeat. And it ain't all repetitious. Cuz, everyone's situation can be a bit different, as you will find if ya stick around. Plus, I have a Lot of Info I have learned over the YRs that bears peating & repeating. I Hope you don't mind the 'homework'. Or Smiley faces.

New DR: Good. Personally, A Yr or so after the AF booted me out of basic training, I went to a County hospital. So, every 3-6 mths I would Have to see a New DR. That went on for over 10 YRs. Due to the meds they kept trying on me, I don't recall much of anything They told me or Didn't tell me. I was totally clueless about Everything. I didn't even know what 'Seizure' meant. No one ever told me what they looked like. Or that there was more than 1 kind. I just knew I hurt all over & wanted to sleep for a week, after one.

15 YRs later, I was introduced to the internet & figured out Search. I found WebMD & haven't Quit Learning or teaching others Since. I don't want those who visit here, to go thru what I did.

So, back to you! I don't think a Hike would trigger one. But, Sick for 4 weeks? Personally, I believe Anything that lowers our immune system for long periods of time, can affect our seizure status.

I, also, agree w/ Barb. (When she said her Mom & Aunt had EP, too, Well, I thought that was my Daughter talking. It wasn't. Barb, if you are reading this, Thank You for your input. ) Dilantin is Not a Good drug. Even if it controls seizures, I don't think the possible long-term side effects are worth it. But, as w/ any med, our systems vary & I have talked to some who have been on that med for over 40 YRs w/ no problems. But, the choice is Yours to make.

Anthony is rite, too. EEG's aren't always a reliable test. You have to be having a seizure for it to record it. Or if the seizure 'focal point' is located too deep in the brain it won't note it. A 24-48HR portable EEG has a better chance of picking one up. Or a Video EEG, which requires 2-10 days Hospitalization. Course my Daughter went in for 3 of those & was sent home the second time cuz of no activity. There is a 'newer test, called an MEG that is supposed to be more reliable. But, Good Luck finding a hospital that has the equipment. Here is some info on that:
http://www.sciencedaily.com/videos/2007/0312-pinpointing_problems_in_the_brain.htm

If you are interested in more info on foods &/or diets that can help decrease/eliminate seizures, let me know. Me & Phylis have some great Info. Course, not many Neuros out there will suggest trying this. But, the concept isn't 'new' & every day there are More ppl testifying about how well it works for them. As w/ any treatment, it's still the same adage. Works for one, doesn't work for another.

Have a Great Day. HUGS!

Love Candi

Thanks again, Candi! I will keep you updated what the new neurologist says. I found this one through word of mouth.

Thanks again for that article on multivitamin ingredients. It really is making me think...

Hi

I'm sorry to hear you've been having such a hard time. My seizures started out of the blue in 2004 gradually at first and slowly progressed. They only ever happen at night even though I get the 'aura' during the day. When i first saw my doctor I was told it was stress and it took me 18 months and having seizures roughly every 10 mins through out the night to and a trip to the emergency room to convince them I had epilepsy. We still haven't got the right medication but my seizures are much improved but nothing I do/or don't do seems to trigger them (apart from sleep!).

I take Zonegram (zonisimide) and have seen a great improvement and have felt much better.

Hope you feel better soon!

I am sorry to hear about the fairly recent seizure activity, although I find it remarkable that you knew what was going on! Really. My daughter has epilepsy and was diagnosed when she was 6, now almost 18. Her's are NOT controlled. She has been on numerous med combinations, had resection surgery and has the VNS (vagus nerve stimulator). It has also affected her mentally and physically. No offense to your neurologist but sounds like you may need a new one... I do not believe from all I have read that the caffine has anything to do with causing your seizures but I am not a doctor but the stress sure can. Did they test you for that? Just curious because it's real. They have never found a definite reason for her seizures either and she has been thrugh extensive testing and was perfectly healthy before that. The one thing they said was that her brain may just have been predisposed (sp?) to seizures and when she had strep it thru her immune system down, possibly then had viral encephilitus which then kicked the seizures into high gear. Scarry, I know. I watched my two younger ones every move until they were older than six because I was in fear of the same thing with them, not that you can catch it but the mother panicking in me. Thank God they are fine but my older daughter still has them and I still have to deal with what the outside thinks of the situation. My opinion is get a second opinion. Not that you do not have epilepsy but maybe another doctor, epileptologist can shed more light or at least give you more help. Tell your wife to hang in there!

hi
i am 47 (going on 48) and i have been diagnosed with a mild type of epilepsy when i was 36. nobody believed me because it would only happen in the early morning and there was never any witness to the seizures. i knew there was something wrong because i would have unexplained bumps and bruises, and once i woke up not knowing who i was or where i was (the fact that i had just moved did not help).
anyway, i was first prescribed dilantin, and i was allergic to it, i.e. i got skin rashes. it was prescribed to me as it was a one-a-day pill to take. then i was prescribed tegretol, and i was allergic to that too, ie. skin rashes again. this i was given because i could take it twice a day. finally the third (and last) drug they prescribed me (and that i have been taking since) is valproic acid. i have to take it 3 times a day, but with time we have noticed that twice a day is OK for me.
no head injuries or history in the family. the reason for my epilepsy is a still mystery.
that said, one neurologist said that i was both 'unlucky' and 'lucky', i.e. i have a type of epilepsy that is very easily treated (no more seisures) BUT i have to take the drug for the rest of my life.
it is interesting to learn that gluten and aspartame can cause seizures. i had always suspected that i had an intolerance to gluten, but i had never expected it to be related to my seisures.
my neurologist mentioned alcohol and flashing lights as possible triggers, but in my case, they are not a problem as i still drink alcohol and flashing light do not bother me.
i am still trying to figure out how i can help myself as i, too, find that sometimes the medical profession can be condescending towards the patients and they are not telling us everything.
i would be very interested in learning more about the VITAMIN and FOOD relationship with seizures.
good luck to you 'always' and hope to hear from you 'dancer'.

I'm turning 23 next week and started having seizures at the age of 19. The first one I had was while driving to work one morning and i woke up in the hospital with a police office standing next to me asking me what my name was. I couldn't remember what had happened and was hoping that I was in a horrible dream. I was free and clear for almost two years then they started taking over my life. I would have episodes and end up in the hospital for weeks getting tons of tests done but a reason could not be pinpointed. The medication I was put on only made my life even more difficult. I began with 1000 mg of Keppra twice a day and was bumped down to 250 mg twice a day and began having seizures again. I am now on 500 mg twice a day and (knock on wood) I've been pretty good. I have my days where I feel like crap but it's gotten a lot better. Sometimes I feel like when I do not get enough sleep I end up having a seizure the following day or if I am over stressed. It has effected my day to day living and relationships. My friends and family are all paranoid that when we are out that I'm gonna fall over and start "spazzing". It's hard knowing that I can fall over at any time and cause a lot of damage to myself, which I have. I've had multiple concussions and other bumps and bruises to almost drowning in the shower. I've talked to various family members who all say that there is no history of anyone having epilepsy. The one thing my dad can come up with is that when his brother passed away at the age of 34 his mother began having seizures. It sucks to think I was able to live 18 years of my life as a normal kid and now turning 23 and heading into law school I have this burden on top of life's other problems on my shoulders. I have learned to loosen up and just go with the flow but it's hard with a mother who is constantly on my back because she's so paranoid and doesn't realize that I can't live my life in a bubble. All in all 27 is not a weird age to find out you're epileptic as I have learned. I've visited various doctors through out the New York/New Jersey area and spent money on the best experts but I doubt I will ever get an answer. Hope you find some kind of treatment that works. Good Luck!

You brought up a good point. If you are "under the weather", especially with a fever that can make it more likely you will have a seizure, but not always. That's the funny thing about seizures and side affects, they may happen...
Alot may seem frustrating but as suggested previously a log will help tremendously. And a seizure is not the end of the world. If you are having an aura, you are lucky in some way because you can prevent yourself from "crashing". That has become a major problem for us with my daughter is the sudden falls and the injuries sustained.
Hoping this is all helping!

Very interesting. My wife has had seizures since age 16, now 61. Most likely from a pet racoon that scratched her. She developed encephalitis and almost died. That left her with EP. I was interested in the diet connection for control. Thanks
Howdy

Hi there, I am sorry that you are going through this but relate 100%. I too had my first episode as an adult at the age of 37 a few years ago. Adult-onset has additional challenges since you end up spending a significant amount of time trying to figure out the real "cause" of what you have. And then the whole thing about "why me?" I was in denial for a long time. Didn't want to admit that I had epilepsy. Thought that there had to be an explanation - an explanation that once found would take care of the seizures. My first seizure was preceded with an aura...in front of my daughter who was in 6th grade at that time. She told me that she panicked and cried but had the presence of mind to call 911. She was so brave. I was assigned to a neurologist - THE WORST - who put me on drugs including dilantin that knocked me out. I worried about my job, driving, raising my child. Makes you wonder why some neurologists are as callous as they are - and the missed opportunities for mental health referrals at the time of visit. To make a long story short, I switched neurologists. My current one started me on one pill (100 mg) of Zonasamide per day. I had a seizure two months later. He increased the dose to two. This was three years ago. In the years that followed, I continued to have seizures, about two to three per year - mostly after working out at the gym..but would come around quickly enough to persuade the paramedics not to take me to the ER. In hindsight that was ok..I guess but the big mistake was not communicating about this with my doctor. Last year, after a couple of drinks (trigger) the night before, few hours of sleep (trigger), coffee in the morning (trigger), I went for a sprint to a nearby college track. On the drive home, my aura was so strong, I parked the car, called 911 told them I was about to have a seizure. After the ER, I went back to my doc..and now on 300 mgs of Zonasamide...and have been seizure free for 6 months. I've learned to be sensitive to my triggers. I know that lack of sleep, alcohol, exercise, and caffeine "lower my threshold." I've been taking care of myself - never skipping meals, keeping alcohol to an occasional glass of wine, and moderate exercise. I share this in the hopes that some of this is helpful to you. It is certainly therapeutic for me. Take care and stay strong. I found that once I accepted it..my energy was focused on how to tackle it..incorporate it into my life..and count my blessings. Some days are tougher than others...but I am committed to making this work.