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Anyone DX with catamenial epilepsy

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Old 03-04-2005, 11:04 AM   #1
Join Date: Mar 2005
Posts: 3
GoAwayEpi HB User
Question Anyone DX with catamenial epilepsy

I was DX with epilepsy 3 years ago after having 3 grand mals in my sleep. After these, I was told I had nocturnal epilepsy...which meant I could keep my license. After the diagnosis, I realised that I had other things happening during the day and they coincided with my menstral cycle. My nuero says it's catamenial epilepsy now...MRI, contrast MRI and EEG showed absolutley normal. So here in lies the great question...are there otheres with completely normal MRI's EEG's and be DX with the catamenial epilepsy. I do not have the complex during the day, I have the partial but I am aware of everything. I have "out of body experience" and hearing changes/speach changes (unable to form words or understand conversation). Was wondering if anyone else has been DX with this. I started with Klonopin because befire I had the complex seizure, they thought I had panic disorder. Then when I had the complex I was put on Topomax with TERRIBLE side effects and no relief from the partials. I am now on Lamictal (due to possibly have one more child) and klonopin in the morning. Sorry this is so long but just wanted to get info from otheres if they have the same....


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Old 03-05-2005, 07:37 AM   #2
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Join Date: Dec 2002
Location: Dayville, Ct. USA
Posts: 765
kayakmom HB User
Re: Anyone DX with catamenial epilepsy

Allison, I have a friend who has epilepsy and it is worse around her cycle so is considered to have a catamenal component. My DD also is worse around her cycle.

My friend DOES still have her license, she does not drive if she is having any seizures that day, usually. Her neuro allows her to take an extra pill around her cycle to help. In her case, Topamax has been great for her. Pheno and Depakote were awful for her. Increased her adult ADD symptoms and did not help seizures plus caused huge weight gain. TOpamax has been her answer.

Everyone is different and it takes time to find the right med that does well for you. Hoping Lamictal does well for you. It takes a long time for that one to get up to therapuetic level.

Hang in there! Hope you find help. It is not to uncommon to have normal tests and still have epilepsy.

What you describe sounds like a simple partial since you remain aware but feel so altered.....
mom of 2 teens who have battled seiuzres.

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