Hello

[rissaf23]

Hello, my name is Larissa and as of Friday, I have been diagnosed with Catamenial Epilepsy. I have had seizures since I was 16. I always had them in my sleep and they were the grand mal ones. They just started one day, I was on depakote, gained weight and then switched to Topmax when I was 19. When I was 23, I became pregnant and stopped my meds. By the grace of God, I have been seizure free since then and haven’t been on my meds. About a month ago, on my period I had a partial seizure. I thought nothing of it, and made an appt with a doctor (I couldn’t get in till the end of May). Last Wednesday while I was at work sat down at my desk and I could feel my heart skipping beats, and then I got tunnel vision, and went into a Grand Mal seizure. I have never had one while I was awake, so I never really had an aura before. I went to the er, was sent home and told to follow up with a neurologist in the am. I called the office and asked if they could move the appt. up because I was very worried. I went, she put me on Kepra, and ordered an EKG (because of what I felt with my heart), an EEG and a MRI. She also told me to follow up with my obgyn and talk to him about having a hysterectomy. I expressed to her that I was a little young, and yes I have two kids, but we want one more. She told me this was not a good idea.

I started the Kepra on Friday, and that night, I had another seizure. This one was so different. I had the same aura, but this time I could feel myself convulsing, I could see and hear my husband talking to me, but couldn’t respond. I couldn’t move, and I couldn’t stop it! This is graphic, but I could feel the pain from biting my tongue, but couldn’t stop. Has anyone ever been awake like this before? Do you think this is a seizure? I went to the er again, which they weren’t any help. Sunday, I had another seizure, but after the aura I don’t remember anything. I have another appt with my doctor on Wed.

Can any one recommend a neurologist here in Houston, because I am very scared to have a hysterectomy at 26. Sorry I know I have so many questions, I’m just lost and confused, and even nervous to be around my children.

Thanks Everyone!

[flinnigan]

A lot of people have asked me why I haven't had a hysterectomy but my neurologist has never suggested it. I'm going to ask my surgeon next week about it. My Ob/Gyn had no info. either. We've put our heads together and put me on Prometrium. Its a Bio-Identical progesterone. The sad thing is this last month I had seizures every week so know I'm not so sure if it will help. At least I seem a little less agitated so its helping that. Its ssso hard to keep all the triggers under control and seems like just when you get it figured out it changes.

Keep us posted on what your Dr. says. I'd love to hear what their feelings are regarding hysterectomies. Good luck.

[rissaf23]

Thanks! I am head to my OBGYN on Friday! I will keep yall posted! I really want to get a second opinion and trust my OBGYN. I do not like my neurologist, she just doesn’t seem like she cares much. I will let yall know!

[skillefer]

Hi Larissa! Honestly, I'd be looking for a second opinion too. Sounds like Keppra is not a good med for you. Epilepsy can be weird because a med that works for one person may not work for another person. Like you, I have grand mals. Don't let your doc bully you into having a hysterectomy. I'm preggers right now, and yes, there are more hazards for those of us with epilepsy, but it's doable. What I would do...since you know you want another child, take a folic acid supplement. It will help reduce the chance of birth defects due to anti-epileptic drug's. Since you have catamenial epilepsy, it means your hormone levels trigger your seizures...so your neurologist should be working WITH your ob/gyn to treat your seizures. Some people are helped greatly by using a simple hormone cream (bio-identical). If your neurologist is not willing to look at the least invasive treatments first, keep looking. Since you live in Houston, I'd check out the hospitals that are affiliated with the Universities there if your looking for a neurologist. My SIL went to Baylor University Med. Center and got great treatment there.

As for being nervous, remember that stress can trigger seizures too. So, be proactive. Keep track of your periods and how many days your cyle is. Mine used to be effected by my periods too. I was guaranteed to have one the day my period started....so keep track of it. At least you'll have a clue as to when you're more likely to have one, and you can adjust your schedule accordingly. Make sure you get plenty of rest the week of your period. My hubby used to handle all of the driving on the week of mine. Also, you might want to try taking a Magnesium supplement. It's a muscle relaxant that also minimizes PMS symptoms and might make you less edgy. Hope this helped.

[Junebug]

I also have catamenial epilepsy. I have 2 girls also and don't have any plans to have any more kids but I am taking OV-Con 50 birth control pills. Most bc pills don't work as effectively, (most are about 65% effective) but Ov-Con 50 is double the reg amnt.
My Dr and my OB are working together to help control my seizures also so my advice is to get a second opinion, even think about asking your neurologist who he/she would recommend.

I also have the same kind of experiences with having a seizure while awake. It happens quite a bit and I feel as if my whole body is fighting against itself. I can't move, talk, or stop the seizure as much as I try I can't. last Wednesday I had the same kind of seizure and chewed up my tongue prob the worst it's ever been chewed up.

Ask your dr about acetazolomide or Diamox. I have been taking that for about 3 months now and it really helps me as I take it 4 days before my period and continue for the rest of the week.

[tripletdad]

Where I have been awake and partially conscious through them, I could hear my wife call to me. I usually lose the ability to speak for a few minutes but it returns. I had 1 or two of those on Neurontin and a few on Keppra but once I got to 3000 mg of Keppra they I have not had a seizure of that magnitude but it took months of slowly ramping up my dosage. Stick with it for awhile and see. With E Meds you have to find the right balance of dosage and meds and that only takes time.

hang in there :-)