New Member

[abrown202]

My name is Ashley. I am a college professor or was until people found out I have epilepsy. I suffered a fall when I was two that created a brain injury but I did not have any seizures until I started puberty and then only when I had my period. My seizures were completely controlled for 28 years.

Eight years ago when I started Pre-Menopause. I started having complex partials but only during my period. I managed to hide them from my employer for 8 years.

However a month ago I had one in a meeting and now they are trying to let me go. I have claimed ADA and they are backing off some but are sure being mean and trying to make me quit. I knew discrimination existed for people who have epilepsy but I did not know how bad it was until now. I can't believe people who I have known for years suddenly treat me differently; like I am a retarded.

They are worried I can't do my duties but I have been doing it for 8 years! I even won teacher of the year.

I have been searching for an answer but there is not much research for catamenial epilepsy (caused by spikes of estrogen). Only Dr. Herzog at Harvard is doing it so I am flying across the country to see him next week. I hope he can give me my life back as I can't drive now and I live in a rural area with no public transportation.

 

[JaneC]

Hi Ashley and welcome. That's shocking that your job is on the line after ONE seizure at work and that people are behaving differently towards you. You're right, it's so wrong for them to claim you can't do your job when you clearly can. My daughter was discriminated in a little part-time waitressing job but a college for goodness sake!

In the UK if I were you and could afford it I'd be tempted to see a lawyer. Very best of luck with your trip, I really hope it's worthwhile for you x

 

[abrown202]

Thanks Jane. It is so nice to find a place where people can understand. I have been everywhere including the Mayo to get help but catamenail epilepsy is not understood by regular neurologists. I think it is because most are men and they don't understand female hormones. The Mayo recommended Dr. Herzog so I am hoping he will be the answer. He is not just a neurologist but a neuroendocrinologist who specializes in how hormones affect the brain. There are not many of them in the country.

Epilepsy can make you feel like you are so alone so I am glad that I have found this site.

 

[Cint]

Hi Ashley,

Sorry to hear your seizures have reared their ugly head again. And the behavior of your employer is absurd, but unfortunately people are still in the dark ages when it comes to epilepsy.

I have been searching for an answer but there is not much research for catamenial epilepsy (caused by spikes of estrogen). Only Dr. Herzog at Harvard is doing it so I am flying across the country to see him next week. I hope he can give me my life back as I can't drive now and I live in a rural area with no public transportation.

There has been much research on catamenial epilepsy. I've had my hormone/seizure problems over the years. Dr. Herzog just happens to be one of the professors at Harvard, along with others.

Here are some websites on the subject:
http://www.epilepsy.com/info/women_menopause
http://professionals.epilepsy.com/page/catamenial_patterns.html

 

[Cint]

I have been everywhere including the Mayo to get help but catamenail epilepsy is not understood by regular neurologists. I think it is because most are men and they don't understand female hormones. The Mayo recommended Dr. Herzog so I am hoping he will be the answer. He is not just a neurologist but a neuroendocrinologist who specializes in how hormones affect the brain. There are not many of them in the country.

Epilepsy can make you feel like you are so alone so I am glad that I have found this site.

I cannot believe there is no neuro/endo at Mayo! I used to see a neuro-psychiatrist who was a friend with Dr. Herzog, so he knew of the connection between seizures/hormones/mood swings. Plus I only see a female epileptologist, rather than a neurologist. They understand women problems, too.

 

[abrown202]

Cint,
Thanks! Have you been treated for catamenial epilepsy? What was your treatment?

When I say not a lot of research I mean the big drug companies are not in a hurry to find an answer and many women have trouble getting their neurologists to see a connection to their periods. Even the Mayo Clinic argued with me about it.

 

[abrown202]

I don't know but maybe I just got a really closed minded neurologist. I went to Rochester last year and stayed in their epilepsy center for a week. I asked about a neuroendo but they told me they did not have one on staff. Maybe I should have went to one of the other locations? I was shocked as well and very disappointed. A women PA told me about Dr. Herzog and said that Mayo has not had a lot of luck with this condition.

 

[Nakamova]

The information about the role progesterone can play in treating seizures has been around for along time. I think that neurologists (and Big Pharma) have been reluctant to conduct studies and explore treatments for catamenial epilepsy since there may be less money to make with natural progesterone. Many (if not most) prefer to prescribe whichever their fave anti-seizure med is...

Interestingly enough, current research is investigating the role of inflammation in epilepsy. Progesterone plays an anti-inflammatory role in the body, so here's hoping more studies will crop up focusing on its uses for epilepsy treatment.