I'm new and I'm getting a great deal of information from this board. I have no history of anything neurological in my family and never did drugs or had a problem with alcohol. I've also never gotten hit in the head. My EEG comes out abnormal and the MRI is normal. I started having seizures (deja vu feeling or grand mal) at 28. I wonder why this has happened to me. Sometimes I think it may be related to my eating (I think I'm addicted to sugar) and blood sugar levels. The doctor's just roll their eyes when I ask. Does anyone have any of these same suspicions?
I don't think that was the cause of mine ...... my MRI's and EEG's also come out normal ..... until i went in to have a VEEG done.... there they captured a grandmal and discovered my start at the frontal lobe ... although they have no idea why they started. Mine started at 22...3 years ago....
Thanks for the reply. My EEG was abnormal. That's why they say I shouldn't go off the meds. The other thing that brings mine on is if I don't get enough sleep. One time I went off the meds for 4 years and nothing happened until I went on a work related trip to Arizona and had to get up at 5 or earlier everyday after going to bed around 11.
Elane, i tend to agree with you in that too much sugar can cause this. My child's diet consisted of way too much sugar and fruit, now enough meat and vegetables. Almost all drinks, cereal, seasonings have high fructose corn syrup in them. See my post entitled "See If This Helps". What drug are you currently on? My child is medication free right now. She's doing much better but not seizure free. I'm extremely hesitant to try another drug as she has so many strange reactions. The docs want to put her on Keppra. If you are on this how is it working for you? When were you initially diagnosed with TLE? THanks for any help.
Thanks for the reply. I looked at the diet posted in your other message - wow - that's pretty restrictive...I wonder if I could do it. I'm on dilantin now - 150mg. In May after I had a big seizure (after going off my meds abruptly) and still eating bad, I decided to quit sugar. I quit all sugars but still ate potatoes, beans and fruit but no fruit juice and I stayed on my medication. After 3 months I lost 8 pounds and felt great, and I decided to go to 100 mg of dilantin per day and try to wean off since I'm trying to have a baby. I had a small seizure so then I just got frustrated and started eating sugar again. I had my first seizure at 28. I had a few migraines prior to that but now that I have seizures I never get migraines. I can't figure it out.
I was reading and was wondering what a VEEG is...I just had a grand mal about 2 weeks ago and just underwent a CT and MRI that were both normal but my EEGs (one 22 hours after my seizure and 1 a week and a half later) both showed seizure activity...I don't go back to my neurologist until the 26th to discuss the results and ask all of my questions...I was on vacation in another state when I had my seizures so it took me by surprise and my family and I didn't really know what to discuss with the drs. in the hospital. I would appreciate any information anyone has for me.
Elane - My daughter used to have what I thought were migranes before she started have the partial seizures she mostly has. This is what the 104yr old pediatrician told me about sugar and carbs. It causes your body to over-secrete insulin which damages cells in the brain. This is also written in a book by Dr. Blaylock called Excitoxins. Keeping your blood sugar as level as possible is critical. When my daughter was diagnosed, she had had a slice of watermelon - the only thing she had eaten that day - and it sent her into status for 3+ hours. To me it's critical to your health that you get control if you think it has an effect. The meds can only do so much and you probably don't want to be on them for life. I don't understand this either. I thought I was mostly feeding my child healthy - lots of fruit, juice, carrot and beet juice, etc. Didn't know even that kind of sugar can be bad. I've seen other kids who've eaten so much worse and they're OK. My chiropractor said he healed his son without meds by keeping his blood sugar level. It took him about 8 years though. I'm just frightened of SUDEP. Right now she's only having partials about once a month. How did yours start out. What were you initial seizures like, how were you diagnosed, have they changed any ?? Thanks for the info. Lazoo
Well...the sugary foods I tend to go for are brownies, cookies, M&M's. The other question was about how my seizures started and if they have changed. They started as deja vu feelings with no grand mal. Now they are more spacey feelings with loss of what I'm saying with slight deja vu and they usually are followed by grand mal. I have always gotten them when under stress/anxiety with a combo of sleep deprivation. My mother told me I had colic as a baby. I heard that has something to do with sugar cravings but I wonder if it has to do with the seizures too. Anyone else have colic?
I have read over and over Epi's are sensitive to coco and banana's.. I do not eat this stuff period anymore.. I will have a cup of Hot chocolate very weak.
I feel aura's coming on after a peice of fudge or something so about 8 years ago I stopped the chocolate completely..so your diet can contribute. Like mom2joy says the diet helps but does not necessarily stop every seizure.
Elane - All four of my children had colic. I breastfeed them and when I eliminated all dairy products, it went away. Perhaps you are also allergic to dairy though it will not show as a rash. My mother-in-law gets a migraine when she eats chocolate. My daughter was an addict when she was diagnosed to chocolate that is. Only my daughter has E, my older kids eat lots of meat, which was the main difference in their diet. That and sugar consumption.
Lazoo: Do you mean that your daughter who has E was addicted to chocolate like me? What age was she when she had her first seizure? I eat a lot of cheese and cereal with milk. How does that work - being allergic but having no symptoms? Wouldn't I feel sick or something after I eat it?
Elane - Guess she had her first seizure at 7 - they were just stomach pains, so will never really know for sure. She usually had a little choc daily. I know from breastfeeding my children, they couldn't handle the dairy - maybe food intolerance is a better word though I'm not sure of the diff. My husband's allergy testing as a child indicated he was allergic to dairy, but he continues to consume it. The 104 year old pediatrician I mentioned in an earlier post told me she had done many studies on dairy and that it was not good for anyone. No other animal feeds on another animals milk. They all go thru a weaning period and that's it. I have read other places also that dairy does more harm than good. I trust this doctor. First, she's done the studies. She truly seems genuinely concerned. She knows that food has a lot to do with this illness and has helped me reduce the seizures the most with her advise. Not to mention, she's still going strong mentally and physically at 104. Worked for her!! She just retired last year!
YOU HAD SO MANY REPLIES I HOPE YOU GET TO MINE I AM A JEVENILE DIABETIC OF 23 YEARS AND I STARTED HAVING SSEIZURES THEY INSISTED IT WAS FROM LOW BLOOD SUGAR AND REBOUND THOUGH THE 2 FEEL NOTHING ALIKE. I HAVE TEMPERAOL LOBE SEIZURES NO SERIOUS ILLNESS IN THE PAST 10 YEARS OR HEAD TRAMA AT ALL. MY EEG LIKE YOURS IS HIGHLY ABNORMAL AND I DO HAVE GRANDMALS SO AS TO THE CAUSE I DONT HAVE ONE DANG CLUE,BUT THE DOCTORS FINALLY RULED OUT BLOOD SUGAR LEVELS.
"Grant me the courage to change the things i can"
[This message has been edited by susieq35 (edited 11-20-2002).]
"Grant me the courage to change the things i can"
Again, what's a VEEG? Never heard of that and can't find in any of my diagnostic test books.
Since I'm quite new to all of this as well, I am shocked at how many of us feel that blood sugar levels are related to seizures. I'm a HUGE fan of Chocolate, and fruit juices. I'm going to try cutting down the sugar. I think it would be nearly impossible to elminate all sugar from the diet as, almost every food's basic component is glucose.
The relation to headaches also interests me. I've had severe migraines since I was 5 years old. Funny thing is the migraines are as but as the seizures have gotten worse. How many of you have or have had migraines? I learn something new every time I visit hear and come up with another question to add to the list of things I want to ask my doc. Thanks everyone
I came to this site after having my worst seizure so far last night. It is very frustrating to not have a way to get control over something that can affect your life so much. But I have been on a special diet, which is amazingly interesting if anyone will take time to read the book, "Blood Types, Body Types, and YOU." My boss gave me that book, and it has answered questions that I have not been able to have answered before, including the dairy question, sugar and a lot more. It explains different blood types, how they originated, and why some foods that are good for one blood type could be very detrimental to the health of an opposite blood type. I have been doing very well, but in the last few weeks, I have gotten lazy and started eating things that I know are not good for me.... I only missed one dose of medication, and normally, that is not enough to allow a seizure for me... but I had eaten chocolate, soft drinks, and had a horrible diet. I thought about it last night before going to sleep (I only have seizures when I am sleeping, but they are very bad...) and wondered if my diet could make it worse... and I woke up this morning from a night of pure hell for my husband who thought I was really going to die last night. Please read this book if you want the best information for diet that I have ever found. I also had migraines before I started having seizures. Please share any information that you have.
Hi. I was diagnosed a few years ago. My EEG's showed something but the MRI's were normal. I have both complex partial and grand mal seizures, or at least I did. For all the complex partial and some of the grand mal I felt deja vu. I had surgery 5 months ago and from the test on what they removed they found a scar in my brain. Of course this doesn't mean you have one but they obviously don't show up on all tests so I found out. I still have auras but that may decrease. I don't know about sugar but I hope this info helps you at least a little.
It's me - Elane. It's been a few days. I've been researching gluten sensitivity when it comes to seizures. Some people cannot chemically react with gluten in the brain. I don't understand this yet but it is interesting how many people think seizures are related to blood sugar levels. Anyone hear of the gluten sensitivity?