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aura, aura, who's got the aura?

Fri, 09/21/2007 - 09:37
It seems that every time I use the word "aura" with a doctor, they look at me like I am nuts. Well, yes,I am nuts--I have epilepsy. I am not certain if I am using the wrong word to describe what is going on, using the right word and then describe something else, or what. I have been diagnosed with primary generalized epilepsy, spent three different weeks in two hospitals between May 06 and March 07, can no longer afford the lamictal / keppra cocktail as my insurance is more like self-insurance, and the dilantin I am taking now seems to be making things worse. Yesterday when I went to a different Neurologist in the same clinic as the MD I have been seeing, he suggested that the diagnosis of primary gen epilepsy might not be "in concrete." I am really fed up. What really IS an aura? I have had no job for 2 years and no income for 15 months. any suggestions? Answers?

Comments

Re: aura, aura, who's got the aura?

Submitted by marsv on Fri, 2007-09-21 - 10:09
Hello , My daughter has this and NO you are not Crazy.This is a wonderful tool to have. My daughter will come up to me and say I don't feel right or my Jaw is going to jump or what ever the feeling may be and a few min. later it happens.. When her seizure's started 18 years ago she could not do this. But she had a real bad grand mal Dec 11.2005 and since that time she has had this wonderful gift ( I that God) I am told that many people with a seizure disorder has this.. I had never heard of it tell My daughters Nero told me what it was... Hope this helps..

Re: Re: aura, aura, who's got the aura?

Submitted by renee6 on Fri, 2007-09-21 - 16:52
Thank you very kindly. December 11, 2005 is an interesting date. On November 11, 2005 I was terminated, over the phone, from a incredibly bad job. it was stressful, the manager was stressful, and I was getting sick a lot. Five days later, November 16th 2005, I had my first tonic / clonic (grand mal) in my bathroom, found myself back in bed (don't know how I got there), and spent ten hours in the county medical center being informed I had epilepsy! I have auras all the time, but have only had three other t/c's. Thanks again.

As you read through these

Submitted by A Day on Fri, 2007-09-21 - 16:59
As you read through these messages in the forums, you will find that *MANY* people here have been looked at like they were crazy. I know I have. What worked better for me was to explain all the symptoms and sensations I experience during the aura rather than use the *word* "aura" and then f the Dr. uses the word, I know he or she knows what they are dealing with. I also explored this site heavily and printed TONS of stuff to take to my Dr including the whole page on SPS's and some of the stuff of the section for Dr's, and also some of the anecdotes and posts here in the forums written by people who I could identify with. Also, the term aura is also used extensively with migraine patients. Migraine is not just headaches...headache is one of four parts of migraine and many people experience migraine aura without the headache. Some symptoms of migraine aura overlap with that of SPS aura. Maybe try that approach with your Dr (just to help them understand what you mean by Aura). Go to www.epilepsy.com and use the search function in the upper right corner. Just type in - aura - and look at the results! Tons of great info for you AND your doctor.

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