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Old 09-08-2012, 07:51 PM #1
mailorderannie mailorderannie is offline
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mailorderannie mailorderannie is offline
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Smile I'm new here - seizures returning - petit mal absence

Hi everyone! A site like this would have meant so much to me 20 years ago, when I felt so scared and alone and freaked out over what was happening to me. Back then, I was at work, in a meeting sitting at a table with others. All of a sudden, here came that really strange daydream feeling that I'd been having a lot! It was deja vu, I would hear words in a sing song fashion that I knew more intimately than I know my own name. The words would be going on around me or a thought, but either way, they would be the most familiar thing I've ever heard, and I would remember the words BEFORE they were even spoken. There would be an overwhelming smell, also all tied in with memory-----smell/memory, kind of all tied in together. It would only last a few seconds and would kind of melt me down a little, but I never felt like anyone around me knew anything about it. It was just a profound, really profound, daydream. In this meeting, one came on, lasted for a few seconds, and then I was back and suddenly saw everyone staring at me--curious, and a little scared!! I was called out of the meeting. My large company immediately set up testing at a local hospital--the works. I was diagnosed with temporal lobe epilepsy and they arranged for me to work with a neurologist after I had every test known to man in the hospital. They said I appeared to have an injury to my "left" I'm pretty sure it was, temporal lobe. I was a single mother of a toddler and had to be at my job; and had to drive. My neurologist immediately started me on Tegretol (carbamazepine). There were difficulties with the med, but no more seizures so long as I took it--none! I had to have a surgery in the hospital and was horrified when a tongue depressor was taped above my bed. There were other things..... My seizures were as I described above, and then after taking meds, no longer occurred. There was a prejudice though that was huge. Some of you know what I mean, I'm sure. I got off the med after a while, but had to call my neurologist 2 or 3 times over the years and request a few pills to stop seizures that recurred for whatever reason--who knows why--they could become almost constant events until a few doses of Tegretol (carbamazepine) and then they would disappear again, sometimes for years! I admit, since retiring 2 1/2 years ago, I've had 4 or 5 of these over an almost 3 year period. A few days ago, I had to have a heart cath done. About 12 hours after, the seizures began again--4 the next day, 2 the day after that, 3 the day after that. I saw my GP, and he was able to write me a prescription for the Tegretol (carbamazepine) thank goodness, without referral to a neurologist and all the testing again. Just as a side note, a different subject al together, this medication has some down and dirty side effects--serious as a heart attack--but it does prevent seizures. Another issue...I don't really find the seizures all that unpleasant, just the ramifications of the seizures. The experience itself is really profound and amazes me every time. I can't keep them though! Recently, a thyroid solid nodule, along with swelling, was found in my neck, while they were doing an ultrasound on the carotid arteries. I have an ultrasound of the thyroid scheduled for next week. I took one pill last night, and woke up thinking my pup was dead, lying beside me--he was just sleeping. I didn't sleep well, but I have not had a seizure so far today. I'm not taking the 3 I'm supposed to take, but am checking to see how the med is working and for how long. I'm feeling the seizure not too far away at this time, as I can feel bits of the feelings and the experience before it hits--some of the time...some of the time there is no warning at all. I know that I've talked a lot, but I wanted to give you a picture of where I am. I'm so glad you're here, and thank you for patiently letting me go on and onl
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Old 09-09-2012, 01:02 AM #2
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Darlene Darlene is offline
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Darlene Darlene is offline
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Wink Nice to meet you!!

mailorderannie,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Absence (petit mal), where a person just stares, complex partial where he may stare, see colors in his eyes, smell odd odours, get a nervous feeling in his stomach (simple partial sz.) or maybe a tonic clonic sz. (grand mal).
Many times people have headaches after seizures.

You should see an Epileptologist (Dr. specializing in epilepys) at an Epilepsy Center which are usually at University or big hospitals. In 2009 I saw one, ending up with brain surgery, since then I have not had another one. Your need to cut out the carbs and starch foods because they will trigger seizures. Start keeping track of your seizures by writing them down on a calendar, by doing this the Dr. may see a pattern in your seizures. Get yourself on vitamin B12 500 mcg. once a day. Also avoid very bright light, like at a theater, the flashing can bring on a seizure. Just close you eyes and turn your head at that time.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

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"Life without God is like an unsharpened pencil -- it has no point.
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Old 09-09-2012, 08:51 AM #3
Porkette Porkette is offline
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Hi mailorderannie,

Welcome to the forum! Darlene gave you some great advice,I've had epilepsy for 40 yrs. and had 2 surgeries to reduce my sz. but vitamin B12 has helped me greatly. I have right temporal lobe epilepsy and I found that hormones changing can really trigger sz. for me. you mentioned that you have had heart problems this can also lead to epilepsy do to the blood flow.
I took tegretol for many yrs. and then I became allergic to the drug. While you are on tegretol do not eat grapefruit or drink grapefruit juice because the enzymes in the fruit can trigger sz. I wish you only the best of luck and May God Bless You!

Sue
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