New to forums

Diseases & Conditions Epilepsy
1
Hi Everyone, I just found ya'll today. Happy Easter :-)   I have not been actually diagnosed with epilepsy, but I have been havin seizures at random since I was 15. (I am 37 now) I have been hospitalized 2 times, last time was a few years ago when I seized at work and was taken via ambulance. I have been through all the tests, I take Keppra to prevent the convulsions, but I still seize, I just lock up now and then when I come out of it, I am so sick, vomiting and headache are always an after effect. I have days when I am just plain "off my game" and I stick close to home. I am not supposed to drive, I was ordered by my neurologist not to work, and different things such as flashing lights, flourescent lights, crowds, unfamiliar situations, and anxiety will cause me to seize. I am so tired of different doctors and tests, it is always the same......they have no clue as to why I seize but I am not epileptic.....anyone ever been through this? Any ideas on what I can do to figure this all out? I seize at random, and often. I have been through several neurologists and different doctors who always leave me shaking their head and telling me they dont know. They stick me on different meds and send me on my way. I would love to go back to work and function normally but it is impossible with no answers. Now I have lost my insurance, so that is an issue as well. I applied for ssi but was denied, however every time I go back to work, I get fired because I seize on the job. Any thoughts would be appreciated.
Sorry this is so long, Im just at a loss.
Thanks in advance,
Liss
2
HI Lisa,

I have epilepsy and have had it for 10 years. For most of that time I have also had Non-Epileptic Seizures. The doctors have said nothing about why I have NES. The internet says NES are panic attacks but from others I have learned that there can be reasons not related to mental health that causes them. So you're not alone in doctors not knowing.

I know what you mean about lights. People without epilepsy sometimes don't even see that normal lights have a mild flicker but to me I can sometimes see them. Yet sometimes I watch TV shows and am ok (but usually looking away, something that doesn't help with strobe lights but they're easy to avoid.) So lights can be hard. Do you have a hard time with things like sunlight flickering through trees or shadows?

Keep trying to get the control. How many neurologists have you seen? Have you ever seen an epileptologist? And how many meds have you tried? I've been on Dilantin, Depakote, Trileptal, Tegretal,Topomax (I think), Neurontin, Zonogran, Zonasimide, Phenobarbital, Keppra, and am currently on Lamical.

I also have Asperger's Syndrome (a form of high functioning Autism.)

I'm glad you found us.

Uhura
3

Hi Liss,

Just a little info. for you:  

1) It is against the law in Canada (US law is the same)for an employer not to hire or FIRE an employee or a potential applicant because of a known seizure condition. It is a form of disrimination and violates the "Canadian Human Rights Act"

By law the employer must provide adequate working conditions or supply special needs as/if required to effectively do the job, even if that means restructuring the work area.

However, if a case like that ever went to court, it would be awfully hard for anybody to prove that they were denied a job for THAT reason, therefore cases like that usually go unreported.
 
2) Question: How frequent are your seizures?
 
3) Are you on meds?
 
4) Stress is a major trigger for seizures, are you avoiding stress on your job or your personal life?
If that is the case ~ maybe being fired is a good thing, maybe you employer can find you a less stressful position. Maybe you're taking on too much.

 

Randy


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day

4
Thank You Uhura and Randy, I really appreciate your response. As for medications, I have been through so many, its hard to remember them all. This is both seizure meds as well as anti-anxiety drugs etc. Currently, I am on Keppra, Klonipin, and Zoloft. I have seen several neurologists from Ohio to Texas and I am under the care of both my family doctor and a shrink who I see every 3 months to monitor the anxiety meds. I have had EEGs, EKGs, bloodwork, a spinaltap to rule out any serious physical illness such as menengitis, etc.
I am EXTREMLY sensitive to different lights, I can NOT be in a store or any type of place that has flourescent lighting, for any length of time or I will seize. Flashing lights, police car lights, strobe lights, natural sunlight coming through the trees etc. are all triggers for me. I cannot place video games, or first person games either.  Also, if it is overcast out, or at a certian time of the evening, I have been known to seize in that shade of light as well.
I have been in the resturant business all my life, I have bounced around in different jobs, everything from office help to outdoor work trying to find a job that I can do where the lights/lighting will not trigger me, Needless to say, no luck yet. I do fine for a little while and then out of the blue, one will hit, causing people to freak out and the next thing I know, Im being carted off to yet another hospital for more testing. I do wear the med alert bracelet but it is amazing the lack of knowledge and panic that people have when someone goes down and is thrashing around. I can only imagine how scarey it is for onlookers who have no clue.
Heres the kicker though, since I was a kid, my seizures have no apparent pattern, sometimes, if I am having a really good day, I can spend a couple hours in a situation and do just fine, the next day I can do it igain and seize. I can usually tell when one is coming on but not always. I can go weeks without seizing and then have more then one in any given day, sometimes more. Its so strange. I have monitored my situation and triedto figure out what is going on at these times but there is no pattern. Any ideas?  Also, I have never been to an epileptologist, I didnt know they even exsist. This is something I will be checking into.
Thanks Again,
Liss