Please help me understand!! - Epilepsy Message Board

twinmomma · 04-05-2001, 12:05 PM

I am a 35 year old mother of 3 year old twin boys. I was recently diagnosed with a "seizure disorder" I guess, as the words epilepsy never came out of the doctors mouth.
This all began in December. I was having dizzy spells which were followed by the "aura" symptoms. I had a pepper smell and always heard the same song. They only lasted a few minutes and I never lost conciousness and I always remembered them happening. I was scared to tell anyone because I thought I was going nuts. The morning after Christmas I woke up and could not remember anything from Christmas day and I hosted a dinner for 30 people etc. This is when the testing started. I had an MRI and they found an old hemmorage. I had a EEG awake and they found nothing. I had a sleep deprived EEG and that is when they saw the elepticform waves. I have had two spells in my sleep in Jan.that woke me up when they were happening but none since. I started taking Tegratol 2 weeks ago much to my disapointment but was told driving was a risk if I didn't take the medication. What I don't understand is how this just happened!!! I want to continue my life in the fashion I am use to living it and I feel trapped by this medication! Does anyone who
is on this medication occasionally drink? Will I have a grand mal seizure even though I only have these "aura" seizures? I would be grateful for any input as this whole situation has made me depressed and angry! Thanks in advance for your time!

Johnna · 04-05-2001, 09:52 PM

twinmomma
I am 36 and was diagnosed with a seizure disorder (they don't seem to call it epilepsy any more) just after my daughter was born. Cause unknown. Mine also started as a sort of dizzy feeling. But the aura came first. They usually do. These were called simple partial seizures. I have also taken Tegretol, with no success. Its not the medication thats keeping you from driving its the seizures themselves. I don't know what the law in california is but here in Maine you must be seizure free for 3 months and have permission from your neurologist to drive. When this all started for me it was 6 months. It was hard because my husband was away (navy) and I had a new baby. I had to depend on others to get around. My family would take turns staying with me until they thought I would be alright,new baby and all. I hated it! I wanted my old life back. Don't get me wrong, I was greatful. My daughter just turned 9 and I have come a long way. Its a rather long story so I won't bore you with it. Anyway, I have now been seizure free for 15 months and now drive. About medication and drinking. With Tegretol they don't suggest drinking to much because the medication will speed up and increase the effects of alcohol. Everybodies triggers can be different so I suppose for some people drinking may bring on seizures. I have been through several medications and finally found the right one. Its just a matter of time so hang in there and they will find the right drug for you. Meanwhile see if you can find a support group. It helps to talk to people who are going through the same. You will hear stories much worse than yours and then you will be thankful yours is minor. It may not seem it to you but after I heard others stories , through a support group and this message board, I was. Hope this helps some.
Good luck! Johnna

coconut · 04-10-2001, 12:46 AM

hello twinmomma,
I was diagnosed with E when I was 26. My children were ages 5 and 1 at the time.

The Drs. often hesitate to use the term 'epilepsy' when they first diagnose a patient, as they did me, perhaps because of the social stigma that surrounds epilepsy, and the denial that so many people might suffer when they first hear such a diagnosis. (not wanting to upset a patient).
But epilepsy is usually diagnosed when someone has seizures repeatedly.
Everyone has their own preference as to terminology.
My kids have grown up now, and don't know what it's like to not have a Mom without E, they are used to it, and know how to react. I admit they've gone through a lot, especially when I had gone into status seizures. But they can handle emergencies well now, and calmly.
For a description of different types of seizures you could go to the Epilepsy Foundations' site at: [url="http://www.efa.org"]www.efa.org[/url]
I hope I've been of some help to you.

Karla · 04-17-2001, 10:15 PM

Hi, boy can I relate. I was diagnosed when I was 19 right after I had given birth to twin boys. i would get a smell and remember them comming on but thought I was losing my mind literally. I went to see a shrink. Lukily the shrink had epilepsy and sent me to the right place. I understand how It can make you feel traped and alone. I found it very hard to take care of myself. The dr told me not to bath alone, go up and down stairs alone, be home alone with the children, cook on the stove, etc. How was I supose to bath the babies, feed them, hold them, take them for walks, drive them to dr. apts or bus them to dr. apts, etc. It was very frustrating. My seizures were never controled at that time. I had aprox 30 a day. I was allergic to most meds on the market. Best thing is to find a support group of friends and relatives. Good luck!

arkie6 · 04-18-2001, 12:38 AM

Just a note, but pediatric epilepsy is often successfully treated with a ketogenic diet where medications have failed or had undesirable side effects. I believe Johns Hopkins is a leader in this area and also has a study ongoing where they are treating adults with the ketogenic diet. For more info, just do a search for the word ketogenic on any search engine such as [url="http://www.google.com"]www.google.com[/url] You might also throw in the words Johns Hopkins to narrow the search down.

Alan