Hi, I have absence and grand mal seizures. I began having absence seizures at age 11 and continued through adulthood not knowing/understanding what they were. I had a grand mal 7 years ago at the age of 32. I was put on Trileptal and Tegretol but still had several absence seizures a month. I started having issues with low blood sodium (rare side effect of Trileptal) so I was switched to Lamictal and Gabitril both caused horrible side effects including a grand mal seizure. I then decided to switch neuros and found out that Trileptal isn't even used to treat the type of seizures I had been diagnosed with in the first place! My new (current) neuro put me on 1000mg Keppra and pretty much immediately I had great seizure control for the first time in my life.

 All was going well for 2 years seizure-wise but I continued to have pmdd issues. I had decided to have a complete hysterectomy in order to relieve all of the hormonal issues I had had for so many years. I ended up having a grand mal for the first time in 2 years. My neuro gave me the ok to go ahead with my surgery and he increased my Keprra to 1500mg/day. My Keppra levels were checked and found to be 12...normal range is 5-30 but neuro said when it is on the low end it can fall off and lower seizure thresholds when a exposed to a trigger (stress, lack of sleep). I had them rechecked a month later and it was 29. I thought all was well.

 I started estrogen replacement therapy a couple of weeks after my surger in mid-May and have had to switch from a spray to a gel (both transdermal and not processed by the liver).

All was well until last week. I had another grand mal. I injured myself this time...smashed my face up on my desk. 911 was called and I was taken to the ER. They checked my Keppra levels and they were 13.8! Now I know why I had a seizure, but I have no idea why my levels were so low when just 2 months ago they were really good.

He increased my nightly dose by another 375 mg/night so I am taking 1875mg/day. I have to wait until the 19th to see my neuro.

Could the estrogen gel be causing absorption problems? Could my drinking 4 drinks in a 6 hour time period (took my Keppra within this 6 hour period) cause absorption issues?

 Thanks,

Kelly

Hi everyone,

I've got great news to spread.  For as long as I've had seizures they've been hormonally related.  

Estrogen excites, progesterone 'protects' is the way I think of it.  

I've seen that my seizures are most likely to occur on day 15-22 of my cycle. (first day of my period being day 1.)  I reported this time and again to the (female) neurologist I  used to see. She wouldn't listen to any of it.  My seizures were resistant to meds she reasoned, "because my head injury was so serious." She increased my dosages and added another medicine.

I finally have a neurologist who listens to me and did his own research.   He was just in from Johns Hopkins and I got lucky by catching him when he was on call. They've made him the Director since his arrival.  I DID get very lucky!

 told him (on the phone)  about my seizures and when they were likely to occur.  He listened, he was familiar with what I was talking about.  He was interested. I made an appointment with him.  He spent an hour with me and then did research.  He told me to give him four weeks. 

That was several months ago, maybe six. With some research he found that the progesterone supplement that I had had to beg for  prometrium, was not absorbed by my body.  The progesterone must be compounded specially. 

There are many compounding pharmacies but I order my compounded progesterone from Freedom Pharmacy in Massachusetts.  It might be Freedom fertility pharmacy I don't know. I'm decreasing the amount of meds I take.  I was on Lamictal, the other neurologist added Trileptal which I've never liked.  With the help of the compounded progesterone I'm down from 600 mg/day of Trileptal to 150 mg.  I'll be off it altogether soon.

I'm so happy to spread good news Ladies, go get some compounded progesterone lozenges.  They taste awful but they work!

Nancy B. 

Hi there, women any age can be affected that way. It can happen a few days before or after your cycle or during your cycle. It can happen to any woman, age does not matter. It happens to women who have never had epilepsy even if they have been pregnant. It's thanks to our hormones. It's called Catamenials and you can find info online. I was struggling with it when I was 40, that was 8 years ago now. It took a while to figure out how to take care of mine, some women can take care of theirs very easy, not all of them.