Hello......this is my first post as I am new to all of this. 9 days ago I had what my husband insists is a seizure in my sleep. I woke up confuzed. Fast forward a week and I had another, this time he videotaped it. I wound up going to the hospital as I didn't feel right afterwards and I've never had a seizure before. Cat scan showed nothing.....they have me on Keppra, I've lost my license, and MRI is scheduled for 7/28 and EEG for 8/22.

I'm lost. I'm spending my days waiting for it to happen again. I have no idea how to cope. Why at 41 is this happening? I don't know why it's taking so long to get these tests done? How do I function, run a business and take care of 4 kids....one with autism....if I can't drive?

Hi CVallonio,

Welcome to the forum! I've had epilepsy for 42 yrs. and my Dr who is an Epileptologist which is a Dr. who specializes in epilepsy has done a sleep study on me and they found I was having sz. (seizures) in my sleep. When you go to see the Dr. you may want to ask for a sleep study to be done because it has been proven that sometimes people who have sleep apnea or other sleep disorders can end up having sz.
From now on keep track of these possible sz. and write down what time they happen on a calendar along with a description of the sz. by doing this the Dr. may see a pattern in the possible sz. Often hormones changing can trigger sz. for both men and women, when I was your age I had a hard time controlling my sz. then I started taking Vitamin B12 1000 mcg. once a day and that did wonders. You may want to start taking that and it won't hurt at all, you can buy it right over the counter. Stress and lack of sleep are the 2 main things that can trigger a sz. and sometimes a low pressure in the weather or if a person uses a cell phone to much it can trigger sz. for some people if they are cell phone sensitive.

I will tell you that I did take Keppra for a about one month and it gave me a very hot temper some people call it Kepprage pluse the drug increased my sz. like crazy. Make sure when you have the MRI done that the Dr. uses the dye so it will show more details in the pictures and don't be surprised if the e.e.g. doesn't show anything that's happened to many people and that's because the damage is to deep in the brain to show anything. The best tests to have done are a SPECT and PET scan they show much more detail. I wish you and your family the best. I have never been able to drive in my life so I understand how you feel just have faith and everything will work out fine. May God Bless You!

Sue

Thank you Sue. I think one of my main questions is......is it possible to never have another seizure? Is it possible that I had this because I was sick, or something like that? Why, at 41 would I all of a sudden have epilepsy? I spend my days feeling sorry for myself. Like I need a babysitter.....as if I have zero independence. I'm waiting for the other shoe to drop....for the next one to arrive. And this makes me feel like the lowest person on the planet. Here there are people who suffer through this all their lives, how dare I complain? I'm a little lost I guess.

Not Sue but... there are a lot of people who have one seizure and never another but after two, the odds get worse. Think of everyone as having the possibility of a seizure, sometimes illness, injury, drugs or hormone changes can lower one's seizure threshold, but often they don't figure out why they start. You really aren't alone in this... one in ten people have a seizure, one in twenty-six have epilepsy. It is actually more common than many people realize. So an MRI may show nothing and an EEG might not show anything (repeated EEGs and EEGs that include sleep or take days increase the chances of finding something - they signed you up for an EEG that includes you sleeping, right?). Learn about the tests that are used, read about basic seizure info, don't be afraid to ask questions, at some point they should have an idea about the diagnosis, etc.. It was good thinking to record it, very helpful. You may not have another seizure on medication, many people get seizure control with their first drug. I know it is a shock (it is a shock for anyone who is old enough to understand, it takes a while to get over that initial shock but it sounds like you won't be letting this stop you from living for too long). There is a lot they can't know until they do those initial tests and if those look ok, they may have to wait to see how you do. Take care of yourself.

Thank you

As far as the EEG, I don't know what kind they signed me up for. I'll have to call and find out.
I can say that I hate this drug.....I'm sleeping my days away....exactly what I don't want to do....sleep. I'm short fused worth my family, I'm itchy all over. I'll deal with it if it means not having another episode again.

I did think of something last night, and of course my mind is running with it. 2 weeks before my first seizure I had a tooth pulled under general anesthesia. It was Propofol. When I google propofol and seizures.....numerous hits come up. How can this be a coincidence? I'm going to wind up driving myself nuts.

Hi CVallonio,

pogo gave you some great info. Sometimes a person doesn't start having sz. until they are going through their change in life and this causes the hormones to change which can sometimes trigger sz. for some people. The main things that can cause epilepsy are the following: genetics, a bad blow to the head, brain tumor, scar tissue on the brain, drug or alcohol abuse, brain damage, a bad scare, trauma, or tramatic brain injury sometimes a concussion also. These are a few things that can cause epilepsy.
The reason why you are probably feeling down or sorry for yourself is because epilepsy can cause depression and the medication can also cause depression. What's kept me going for yrs. is looking at the famous people who have epilepsy like Einstein, Elton John, Agatha Christy, Danny Glover and retired football player for the NY Jets Alan Faneca. Alan has had epilepsy since the age of 14 but he went on the be a professional football player and I think that's great.
I have also found that being on the ketogenic diet which is similar to the Adkins diet has done a great job reducing my sz. The diet is high in fat but low in carbs and starch foods. You should cut yourself back on these foods and stay away from NutraSweet (diet soda) that is known to cause more electrical activity in the brain and trigger sz. for some people. I found that out after drinking diet soda and having sz. after sz. Yes, a person can have a sz. when they are sick that's when I have most of my sz.
Try and keep yourself busy and you will have less time to think about the chances of epilepsy. I have a cousin who had grand mal (tonic clonic) sz. in her teens but once she was in her 50's here sz. stopped and she never had a sz. again. I wish you the best of luck and May God Bless You!

Sue

CVallonio,

I agree with Sue with the things she has told you. I too ahve had Epilepsy since the age of 10, dure to a scar on my brain. I am on Keppa, it took me awhile to get used to it. Finally in 2009 I had a surgery which sucessfully release me from my seizures(55 years.) Just have patience with the time in which the medical personally will help you out. My thoughts and prayers are with you.

Darlene

Update:

CatScan....clear
EEG.......normal
MRI........normal
I see neurologist tomorrow
Just got my DMV letter

This RX still sucks

Hi Cvallonio,

I find it strange that all of your tests came back normal but I will tell you some of my tests came back normal also and then I had to have a video e.e.g. where they drilled 7 holes in my head and put the electrodes directly on my brain before it showed anything. This happened because the scar tissue and brain damage were to deep in my brain to show anything. Then when I had brain surgery to reduce my sz. my Drs. found brain damage that they never saw from a single test it was so deep and you may be having the same problem.

In regards to not being able to sleep when you see your Dr. ask them to do a sleep study on you there's a possibility that you may be having sz. in your sleep and they are waking you up. This happened to me and I would have sz. 1-2 hrs. before I woke up in the morning and I would feel exhausted. If you notice this tell your Dr. but I would still request that you have a sleep study done. Along with the following tests WADA test, SPECT and PET scan these test will show much more detail than the tests you have already had done. I wish you the best of luck and May God Bless You!

Sue

I was diagnosed this morning with epilepsy. I've been put on Topamax in addition to the Keppra. My license has been suspended. I haven't stopped crying yet.