New here......
 

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

Be patient!!
 

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.

Hi CVallonio,


I'm so sorry to hear that the Dr. did diagnose you with epilepsy and that you won't be able to drive. I understand very well how you feel because I have never been able to drive in my entire life. I know it's hard to believe but there is a possibility that your sz. may stop and then after a certain time depending on where you live you can get your license back again. I have friends that were able to get their license again after they waited a certain amount of time and no longer had sz. If I may ask did your Dr. tell you what type of sz. you are having? I know many people stop having absence sz. and I also know a few people who have had tonic clonic (grand mal) sz. and then they all stopped after awhile and they are driving now. Have faith and don't let it get to you. I will be praying for you that all goes well and that your sz. will stop and that you will be able to get your license again. Wishing you only the best of luck and May God Bless You!

Sue

Sue,

Thank you so much for your support. The videotaped seizure was a grand mal. IVE only had 2. I haven't had another...and I pray that it stays that way. PA states that I must be seizure free for 6 months to get my license back. So the date I'm striving for is January 16th. Prayers to everyone here for good health. Thank you for all the info.

Good evening everyone.I've only been on this site a few times.My special needs daughter has had seizures her whole life.Today she had her 7th VNG put in.SHE IS ON DEPAKOTE AND Onfi.ativan and vallium.she's 34 with the IQ of a 3 yr.I WISH all of well.If I can help just yell.she's been on life support because of this.sge has been all but the newest meds and still having them all during the night and day.please all of you take care of your selves.:)

Welcome Truebeleiver. :Wave-Hello:

Nice to meet you!!
 

Hi Truebliever,

Welcome to the forum! I've taken Depakote in the past and it worked well for me but after yrs. of taking the drug my body became immune to the drug.
If your daughter hasn't had a sleep study done yet you may want her to have one, I had one along with an e.e.g and e.k.g. all at the same time and my Dr. found that I was having seizures (sz.) in my sleep. This may be going on with your daughter also. I have found that keeping track of my sz. buy writing down what time of day or night I have any sz. along with the type of sz. has helped my Dr. a lot they have found a pattern in my sz. and they can now tell what days of the month I will have any sz. and it's a big help to the Dr. as well as me. Here's wishing you and your daughter only the best of luck and May God Bless the Both of You!

Sue

Hi CVallonio,

I'm sorry to hear about your recent diagnosis of epilepsy. I was just wondering, though, how they diagnosed this without EEG evidence? M-i-m

I don't know. When I saw the chief of neurology...she told me that more than one seizure, no history of injury to the head, no evidence of tumor, etc equals a diagnosis of epilepsy? All my paperwork also says diagnosis: epilepsy.
It would be great if not true.....and if it was just some sort of fluke?

Hi CVallonio,

As I've mentioned to you before get away from a neurologist and see an Epilelptologist because these Drs. specialize in epilepsy and can find out a lot easier what is causing the sz. Years ago they thought it was just scar tissue on my right temporal lobe but as time went by and testing got better they found out I had 2 bi lateral lesions very deep in my brain and not a single test showed it, they found out after I had my brain surgery done. If you see an Epileptologist you will be taking less meds, and they will take there time with you in their office answering any questions or concerns you have.
other than a brain tumor causing epilepsy these are a few more things that can cause epilepsy: a bad scare, lack of oxygen at birth, difficulities at birth, a bad blow to the head, drug & alcohol abuse, genetics, heart problems, and sometimes diabetes, or MS can lead to epilepsy.
I wish you only the best of luck and May God Bless You!

Sue

CVallonio

Report the Itching to your doctor immediately .Itching is a sign of a hypersensitivy . According to the literature on Keppra (Levetiracetam), it "should not be administered to patients who have previously exhibited hypersensitivity to levetiracetam OR any of the inactive ingredients ."


Linnie
Whose been at this from 63-67 years

New
 

Hi everyone , Im new to this site and I would be really grateful to at last have people to talk too. I have suffered from epilepsy for 17 years and still feel alone in this battle. In my country there is no support suffering from seizures. I also have stress seizures. I really would love some new people and friends to confined in because there is only so much you can tell others.
Hope to hear from you.
Kind regards ,
Chelsea