new to epilepsy, not to life

[mike callow]

Hi, After 14 months of being diagnosed with everything from Syncope to depression to PTSD someone finally witnessed me having a seizure during one of my "blackouts."
I was diagnosed one week ago with Epilepsy and have been on 1,000 MG of Depakote ER daily and it is making me very tired. Is that dosage normal? Seems like a lot for a first timer. I was on 500 Mg for 3 days before going to my present dosage. I've only found this site today and was glad I did because I feel/felt like I ws the only person in the world that was suffering through this crazy condition.
I'm 58 years of age and have been told it's a little late in life for someone to come down with Epilepsy.
Please tell me it's not the end of the world. I've always thought of myself as brave but anymore..............
Thank you,
Mike

 

[RobinN]

Wow Mike, I am no expert, but that seems like such a jump in meds.
Now I have no experience with this particular medicine, my daughter is the one that is having seizures. She is about 110 lbs and we are moving her up very, very slowly. I thought that was the normal routine, but it appears not. This is her fourth med, and so we are being extra careful. She has tried Tegretol, Gabapentin, Lamictal, and now Trileptal.

Just remember there are many reasons for seizures, and just because you have been handed a diploma with the word epilepsy on it, don't let go of the fact that there most likely is a reason for it to appear in your 58th year.

Please read all you can about diet, and how what you eat can effect you neurologically.
Also, there is some wonderful information about how blood, oxygen, and heart related disorders can cause seizures as well.

When you aren't feeling so brave we are here, and hopefully you can be there for us.
Certainly not the end of the world, if you look at all the influencial people that deal with it.

I look at it as my job to raise awareness. There was some reason my daughter was handed this challenge, and in figuring out that reason, I will help others. A positive must come out of this.

Glad to meet you...

 

[mike callow]

RobinN,
Thank you for your quick and thoughtful response. I will put your daughter in my prayers. I guess I am feeling sorry for myself as I have been healthy all of my life and never had to face a health challenge such as this.
I will do as much research as is possible and will do my best to make the very best out of my new life. (not being able to drive is a bummer...)
GLad to meet you too.
Mike

 

[RobinN]

I know the feeling Mike, she had been healthy for 14 yrs and then Whammy!
I really believe there is an underlying cause, and sometimes a few. When you find the magic combination I believe it must feel like a new lease on life. I have been viewing Rebecca's episodes like a warning, and I need to find out why the system has a glitch.

I bet the driving is one of the worst reminders. All of Rebecca's friends are getting their permits now, and she is so willing to be patient until at least 18. I hope to find out what is going on before that.

Ah... I just saw your location.. I use to live in Lucas Valley. I so miss The Bay Area

 

[Birdbomb]

Welcome Mike

My first seizure happened when I was 47. It's not unusual for epilepsy to happen later in life. The funny thing is, if you start talking to others about it, you find there are lots of others in the same boat, they just don't talk about.

Three years ago I had a total knee replacement and the nursing staff was a bunch of idiots when it came to knowlege of epilepsy. It was one lone little aide who was the most knowledgeable and most SANE about it, all because his brother had the same type of seizures as mine and he recognized them.

Epilepsy means change. We must change our accustomed lifestyles because of it but we don't have to be a SLAVE to Epilepsy.

 

[Bernard]

Hi Mike, welcome to the forum. :hello:

It's actually not uncommon for people to be diagnosed with epilepsy in their 40s and 50s. There are a few members here who are in the same boat.

Make yourself at home here.

 

[maureen]

Welcome Mike

Hi Mike,

Welcome!!!!

Check out some of the sayings that come at the bottom of many of the pages on this site - I have epilepsy, it doesn't have me, quotes from Winston Churchill etc.

If you only have a minute and can't read what the members have to say those quotes will give you something to consider and probably put a smile on your face.

I'm new to this too and it's scary. You can feel very sad too. There is nothing wrong with that. What's important is to get all the info you can here and other places and learn to take control of the situation. You'll look around and see a lot of other people in much worse situations and almost feel guilty for being in control.

Good Luck Mike. I hope you find the answers and support you need.

Maureen

 

[POSITIVEPERSON]

Hi Mike : Welcome to the board ,nice meeting you. Next month I will be 52 yrs old and I have had epilpesy since I was 11 yrs old . My Dad and my nuero made sure I lived my
life to the fullest. I had epilepsy but so what ???????? Attitude is everything!!!!!!!

Looking forward to getting to know you
Riva

 

[mike callow]

RobinN, Birdbomb, Bernard,
Thank you so very much for your responses. I truly have been feeling like the proverbial "Lone Ranger." I am still feeling like the Ranger - but not so alone.
Mike

P.S. RobinN,
I hope you and your daughter are not in harms way due to the Southern California fires.
Take care,
Mike

 

[mike callow]

Thank you Riva & Maureen & all of my new friends.
This is the best I have felt (physically & emotionally) in days.

Mike

 

[Bernard]

 

[Zoe]

Mike,
Welcome to the forum! I had uncontrolled seizures for many years and overcame them. I'm in my fifties now.
All the labels you got raise a few red flags for me. Maybe this new label is misplaced also.
Did you have a tilt table test when the syncope was diagnosed? No, seizures are not the end of the world. I encourage you to get some other medical studies and opinions before buying into the label of epilepsy. Lots of things can cause seizures, so be cautious about assuming you have what goes with a label.
How were you diagnosed with epilepsy? Did you go to a specialty center and have telemonitoring?
These are a few things that may have led to developing seizures;
gluten [wheat] intolerance
lactose [milk] intolerance
magnesium deficiency
calcium deficiency
vitamin D deficiency
B12 deficiency
Exposure to pesticides or other noxious fumes.
Alcohol use
Stress
side effects of drugs. I know of one person who had seizures for many years, uncontrolled. After going through hell for about a decade his physician figured out his seizures were due to one of his meds. If you don't have a history of seizures, you may want to check things out further.

 

[brain]

:hello: Mike!

Glad to have you here! And like Bernard
posted, we have members here who are
in the same boat just like you!

 

[Nancy]

Hi Mike -- Welcome
Have you had an MRI?
I was 46 when I was diagnosed in 1990, but it took until 2005 to learn that a brain tumor had started my seizures.
All the tests are vital and the MRI is too.
Best wishes.

 

[spinnymommy]

Hi Mike - welcome.

This group has made me feel much less alone in this whole epilepsy thing.

I was diagnosed 3 years ago. (I'm 46) A year after I had a head injury.

There are a lot of different ways to get epilepsy. It seems to me that the most common cause is "unknown", but what would I know? I just know that I found out I am not alone in this and it is so good to know that.

 

[speber]

Definitely NOT alone...

Mike, you've found an exceptional collection of people...I mean really.

Welcome.....put your favorite tunes on in the background and surf this forum...you might (I'm betting 'WILL') find something strangely 'relevant' to your particular day-to-day doin's that puts you on a good, positive road!

Peace!
:rock:

 

[mike callow]

Zoe,
Thank you for your very concerned response. No, I have not had a tilt test. I have had 4 brain scans in the ER room, 2 EEG's, 2 EKG's, 2 CT soft tissue scans, more blood tests that I thought possible, yet they still cannot find out what causes me to black out. All of this within the last 14 months. I have been diagnosed with everything from stress to PTSD (I'm a Marine Corps Viet Nam veteran) yet they have not been able to find out why this is happening to me. As I have only been diagnosed since 10/17/07 I am still trying to get adjusted to meds and my ability to deal with the diagnosis.
I will stay in touch with you all but I hope you understand I am scared out of my mind and trying to maintain an outlook to the rest of the world that all is well with me. I will review all of your issues that can cause this.
Thank you all so very, very much. I have always thought of myself as a strong, courageous man. But this is a test that I've never had to study for

Thank you all for your time and your shoulder.

Mike

 

[Zoe]

Mike,
Bottom line is to go at your own pace. We're all here rootin' for you.

 

[Bernard]

I have always thought of myself as a strong, courageous man. But this is a test that I've never had to study for

That's how I felt when my wife was having uncontrolled tonic clonic (grand mal) seizures once a week during the day time (falling and frequently injuring herself). I learned a lot about myself during that period.

 

[mike callow]

Folks,
Thank you my freinds. Your care and concern means a lot to me. More than I can express at this time.
Take care all.
Mike