Hi There
I started having GM seizures in 2007 and been having it on and off every year or two. My neuro doctor never draw any connection between my hormone changes and epilepsy. He doesn't know what caused them after various tests and scans.

I am on Keppra 750Mg twice a day. Every time I tried to lower the meds for a few months, I had a seizure. I'm sure something else might have triggered it as well (like less sleep, time change, ...). After a seizure, I need at least 16-20 hours of sleep. Then my body aches all over, and it seems I had some respiratory issue for 1-2 weeks afterward.

I read in 'NeuroTalk' and other sources that women with epilepsy can go through changes (epilepsy frequency, etc.) during menopause. I have not found anyone start having epilepsy during menopause in these forums though.

Do you know of someone out there starting seizures later in her life like me?

Hi m_jip,

Welcome to the forum! I've had epilepsy for 39 yrs. I started having seizures when I was 10 yrs. old. Often a person will start having seizures when hormones are changing in their body. When a woman starts to go through her change it can either increase or decrease seizures for the person and that's because the estrogen level is going up and estrogen causes more excitment in the human body and the progesterone level is going down and it's progesterone that helps calm the nervous system. This type of seizure is known as "cateminal seizures" (sp?)

You mentioned that you have been having respitory problems this can be something that can trigger seizures. Drs. have found a connection between heart problems triggering seizure, also if you haven't had a sleep study done yet you might want to consider it sleeping as long as you do after a seizure is longer than usual and I wonder if you have sleep apnea or another sleep disorder. Lack of sleep and stress are the 2 main things that can trigger seizures.
My advice to you is to get a calendar and write down what time you have any seizures along with a discription of the seizure. Also be sure to write down when you start and stop your monthly cycle. By doing this your Dr. may see a pattern in your seizures and they may be happening 1 wk. to 10 before your monthly cycle and then again after your montly cycle if this is what your Dr. sees then you can tell it's all do to hormones changing in your body. The best thing for you to do is to see a Epileptologist (Dr. specializing in Epilepsy) at a Epilepsy Center which are usually at University or very big hospitals. You will have to have your family Dr. refer you to one.
To find out what's causing your epilepsy you should have a wada test done that can pinpoint the exact cause of your seizures. When I took Keppra the drug increased my seizures and made them worse so I went on vimpat and I had a lot fewer seizures than when I was taking keppra. Once you get in to see an Epileptologist request a DNA test that will show what seizure meds will work the best for you with the least side effects. In the mean time take vitamin B12 1000 mcg. once a day, and eat almonds or low salted peanuts. I know this sounds wierd but nuts have progesterone in them and when I went through my change in reduced my seizures greatly. Stay away from nutra sweet and cut back on the carbs and starch foods because they can lead to seizures. Sorry to carry on so long. Wishing You the best of luck and May God Bless You!

Sue

Hello and welcome, happy to see you have come to be with us, it a great place to be.

I feel everyone has different ways a seizure. Sue gave you some excellent advice on some causes and also some things to take to help prevent them. One thing I will add is to avoid bright flashing lights like in a theater, just bend your head down when they accrue. I at one time about a day before my monthly period would have on seizure.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

darlene i am hysterical. i have always had seizures prementral and know that hormones do affect them. i hope this support helps you. my problem is that they are taking my med off the market. they stopped making it last year and no one told my doctor or pharmacist. i called the company and they confirmed it. this is the only med that worked with dilantin mysolin with it. it is mebaral . i called the company and they said it is true . they stopped production in january 2011. the medication may still be good but if so only until march. this is why i started having seizures again. no other company makes it. i picked you because you seem so involved. what can i do?

Hello and welcome, happy to see you have come to be with us, it a great place to be. Our shoulders are here for support in many ways.

For years I was taking the same medicine as you, I went to a new neuro ans he removed me from all three and gave me Keppra & Lamital, I did better with them but still was having seizures. If I were you go see a Epileptologist usually at a medical school. Since I had my surgery I have not had a spell in 2 years. Then again a medicine may help with one patient and not another. Take vitamin B12 1000 mcg. once a day, And afford watching shows, especially at theaters, have bright lights flashing to ward you. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

I started menopause on and off about 2 years ago right before when I turn 50. I had my first seizure 8 months ago and at the time I thought it was due to the the hot flashes. I experienced the exact same symtoms you described. They ran tests (MRI, CATSCANS, and EEG) all were normal. I had my second seizure last week during a particularly stressful time at work. They put me on Keppra 500mg twice a day. Now I hope the medication work but I'm worried about the side effects.

Hi Cejay,

Welcome to the forum! Stress is the number one thing that can trigger seizures for a person along with lack of sleep and hormone changes.
If I may ask does anyone in your family have epilepsy? If they do this could be a genetic thing that is triggering seizures for you.
Often a person can have tests done to find out what's triggering the seizures and the tests won't show any problems and that's because brain damage is deep in the brain. I was on keppra for a yr. to help control my seizures and it increased them but everyone is different. Tell your Dr. to do an DNA test on you and they will be able to find what AED's (seizure med) will help you the most with the least side effects. Also read my first post and follow through with that it will help you out a lot. Here's wishing you only the best of luck and May God Bless You!

Sue

Hi Sue and everyone here. I started having seizures when I was 12 about 6 months before my first period. Well, that is when grand mal seizures started. i wonder if I had petit mal or absence seizures before that as there were times in school where everyone had already learned something and knew what to do and I had no idea what they were talking about. i was too afraid at that time to tell anyone about this because I thought they would think I was crazy(even at the age of 8 I thought this). lucky for me I was able to pick up things in school relatively easily so no one knew I was having problems. Not until I had one and was unconscious for at least several minutes when I was 12. At first i don't think i convulsed and then put me in the hospital and did all the tests that they did back then to discover what was wrong and found nothing but I continued to have these "spells" They mostly happened at school where I was usually stressed out. I was a very serious kid and worried all the time about everything.

These "spells" started to become grand mal seizures and they put me on dilantin. The only time anything ever showed up on an EEG was when I was 13 and they showed abnormal spikes and told me I definitely had epilepsy and I continued on this med. i was also on phenobarbital at the time as I had a headached for four years that never went away and it was determined to be a tension headache so my regular doc had me on the phenobarb for that. I also went to biofeedback for the headaches and saw Psychiatrists etc. the headache finally left me when I was near the end of the 10th grade but the seizures continued, usually at school. They especially happened in stressful classes like Frech class when I would have an oral exam in front of the class. boom I would have a seizure. i was so terrified of dong that in front of everyone it caused the seizures. My French teacher finally started taking me out in the hall to do the oral exams alone with her so I wasn't so scared.

Over the years I did notice that the seizures usually would happen the week before my period or just after it. sometimes the first day into it. I had long periods lasting at least ten days and heavy ones too. I also started getting migraines at this time.

One thing i wanted to say though is that I have gone through pretty much every test including several VEEGS and of course they never see anything wrong to the point where Mayo Clinic says I have seizures of undetermined cause. Of course I had problems with the neurologists there as some only listened to parts of my story or what my boyfriend said would happen as I lose consciousness. and the residents wrote things down that I never said etc. It got to be quite a mess there and I have to say that there was one good neurologist there but i ended up seeing other ones for seizures and they were all too busy to listen.

but Sue you said something about asking for a WADA test to determine where tor what was causing the seizures? I had thought that this test was only done for surgical candidates to determine where their speech and language areas where in their brain as everyone's isn't the same. Is this a test that most people have even if surgery hasn't ever been talked about?

sorry for the long intro i just wanted to explain where I was coming from.

thanks,
Sara

Sara,

I had a WADA test in the year of 2009, just before I did have my surgery. It was the last testing my Epileptologist and the board decided I was OK for the surgery. I had no problem with it. It is testing the two different sides of the brain on the memory a person has on each side (short time and long time memory).

My thoughts and prayers are with you.

Darlene

Hi Sara,

The wada test will show what side of the brain is used for memory as Darlene metioned and it also will show what area of the brain you are using for speech. Most of the time it's done before brain surgery but if you have this test done your neuro will be able to tell what's causing your seizures.
For yrs. they always thought the my seizures came from lack of oxygen at birth but the wada test showed that what really caused my seizures was trauma that my mom went through when she was 4 months pregnant for me and my grandfather passed away. That trauma caused to many brain cells on the right temporal lobe and in turn I had a scar from it and by the age of 10 the seizures started. The only other test you could have done is a veeg where they do surgery and put the depth electrodes directly on the brain by doing this they may be able to pick up and pinpoint the area of your brain that's triggering your seizures.
I wish you the best of luck and May God Bless You!

Sue