The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.

Tentative diagnosis

Tue, 06/19/2012 - 07:41
Hi everyone I'm after some insight. In 2005 I started getting what felt like little black outs whilst driving. This started after becoming very I'll whilst 35 wks preg having an emergency c-section n dying on the table during. Obviously I am still here but was in a coma on life support for 3 days. The funny feeling I got before hand was the actual seizure n the mini black out was me snapping out of it. I wld become extremely tired afterwards and have to pull over for 15-30 min sleep. Anyhow my dr sent me to a neuro and I had a sleep deprived EEG that showed epileptic spikes of a generalized nature. It was recomended that I was started on epilim. However my dr did no even tell me it was abnormal. 2 yrs later in 2007 I had a non sleep deprived EEG which was meant to see the difference whilst on medication. It was normal, however I had started smoking marijuana. And I thought the episodes had stopped. Tho my partner disagreed. And described periods of what appeared to be atypical absence seizures. The neurologist diagnosed me with atypical absence seizures. And again recomended epilim and another eeg in 3 mths. Again my dr failed to tell me Now my family history my nana had absence seizures all her life. And my uncle has clinic tonic, and my cousin also has Jms and absence seizures. When I was a child I had many of these symptoms and what I now know is jamevu. Is be thinking and all of a sudden one example about the sky. And had to keep repeating the word because it sounded foreign and I didn't know what it meant. Even tho I knew I knew the word. This has happened also with the word telephone also. I still have alot of dejavu and jamevu episodes but as I don't recall my absence seizures, and I live alone with my 6 mth old son, I don't know if they are occurring. I went to my dr because since in my 20's I've had terrible headaches wen waking in the morning. And excruciating pressure like my head is held tight in a vice. The only way to stop it is to go back to sleep. Or get up and put up with it for upto half an hr. I get plenty of sleep between 8-10 hrs every night. Yet I'm still fatigued most of the time. Some days and morning are better. But most are horrific. I don't believe I've ever had a grand mal seizure. I've never found myself on the floor but worry I'm having them during the night. I also have alot of other symptoms I have read on here in other pols stories. My dr has now decided to send me back to neuro ssince she found my letters in my file after all my other tests cam back normal. But she won't put me on meds until I can have a re diagnoses. I quit marijuana 2.5 yrs ago, and am definitely having issues again. I'm worried because I'm a sole mother. What if something happens whist I'm home alone. And shldnt this have been dealt with 5-7 yrs ago. Advice wld be much appreciated.

Sign Up for Emails

Stay up to date with the latest epilepsy news, stories from the community, and more.