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Posted 4/22/2005 3:30 PM (GMT 0)

I recenly have had two seziures within the span of a month.  They were not terrible, in fact the neurologists have a hard time classifying them as seziures.  During the first one I did bite my tounge a little, so I guess that sold them.  I'm on Neurologist number 3 now, mostly because I am not happy with the level of care, more spicifically the fact that they didn't really care too much about my case and seemed to make the diagnosis rather quickly and put me on meds (Tegratol XR).

I wouldn't be so upset about the whole situation if it were not for my job.  I am or should say was an airline pilot.  It was the only thing that I ever wanted to do in my whole life, and the doctors told me rather quickly that I couldn't fly anymore.  Frankly if anyone is going to tell me, a 25 year old, that I can't do what I love for the rest of my life they better be darn sure of it.  There are a lot of things that can cause seizures and after doing a lot of research there were some bases that were not covered no matter how seemingly remote (and i think the doctors are afraid of their liability in this situation). 

Anyway i'll stop ranting.  Anyone have a smiliar experience and are there any pilots on here with any kind of experiences to share?

Brad

Posted 4/22/2005 3:34 PM (GMT 0)
Rant away Brad! I totally agree with you!! They need to be sure beyond the shadow of the doubt that you have had true seizures before taking away your passion and lively hood.


I would keep searching until you find clear answers. We have had a long treck doing this for our son as well. It is so frustrating. I think each neuro has their own take on tests and results and what to do....Epilepsy is not an easy DX or an easy fix for so many...

Hang in there....rant any time.
GInny
Posted 4/22/2005 3:49 PM (GMT 0)

Thanks for the post!

I just didn't realize how seemingly unprofessional Neurologists are (so far) in general.  And after reading the stories on here and elsewhere, I'm definately not alone.  I come from a family of doc's so i mean this a little toung in cheek but what a scam for them.  After me/my insurance co spending hundreds of dollars he's going to return my phone call or we're going to have a problem.

Brad

Posted 4/22/2005 11:00 PM (GMT 0)
I am sorry about what you are going through. It is so difficult to have these episodes let alone have freedoms taken away from you. It sounds like flying means so much to you, and I hope that you get the situation resolved so that you can go back to doing what you love.

It seems very hard for me too with the doctor thing since it is inconclusive - probably the majority of information the doctor has is based on heresay, what happened after the fact. I had one seizure that has prompted all these tests. (I have a history of myoclonus when I am sleeping or in a restful state, and now had one seizure during the day with loss of consciousness). Therefore, I had an EEG for 1 hour, about 1/2 the time the tech was out of the room and during which I had a muscle jerk - myoclonic jerk which is NOT a seizure. But the EEG of course showed an abnormality, so now my Dr. is saying it is a Seizure-like activity. When I told him what it was and that the tech was out of the room, he said well the tech can't possibly keep her eyes on you for a whole hour without taking her eyes off you. (Hello - don't they get PAID to do this?).

So in addition to my own venting, I guess what I am trying to say is continue to pursue getting the CORRECT answers and hard data rather than the doctors making major decisions on behalf of your freedom and future. Good luck and Be Well!
Posted 4/24/2005 11:23 PM (GMT 0)

Mary,

I understand exactly where you are coming from.  The first issue aside from my job is finding out what exactly is going on.  My main problem so far is that the doctors have been very passive and uninterested in helping me in a timely manner (i can't have the diagnosis drag on over the course of a year) and I don't see to sound pushy.  Very few of my questions have been answered. 

Secondary to that, the FAA has a pretty specific criteria for recertifying pilots that have had this happen.  If I had two isloated "incidents" (not gran mal seizures), and I go unmedicated for a period of 2 to 3 years with nothing happening, I could get my medical back. I don't blame the doctors for being concerned, but they get involved with pilots with heart problems all the time and LOTS of them are able to fly again. 

Brad

Posted 4/26/2005 3:55 AM (GMT 0)

Hi Brad, sorry about what's going on.  I always advise people not getting good care to seek out an Epileptologist.  They are specialty neurologists and if there's a questionable diagnosis, one way or the other, they are the one's to get the proper diagnosis and care for you.  Check with your insurance carrier about getting a referral to one.  I've had sz's since I was 1 but never got any good care until I was 26 and starting seeing my Epileptologist.  I would never go back to a general neuro.  Hope you find answers and I can imagine how horrible this diagnosis is to someone in your profession.  My husband is a police officer and this diagnosis would end his career.   

Christine 

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