Been having odd things happen... Could it be a form of epilepsy?

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jmattick
Regular Member


Date Joined Jan 2005
Total Posts : 96
   Posted 5/22/2005 12:26 PM (GMT -7)   
To start, let me point out that I have been to the doctor before for having blackouts, and having no tests done, my doctor contributed it to an episode of some sort. My biological father has epilepsy, and he has grand mal seizures (or at least used to, I'm not in contact with him any longer.)
 
I'm 18, and all through my childhood, I had splitting headaches, maybe once a month a blackout, and every couple of weeks I had this thing happen where all of the sudden, the sounds around me would go monotone and sort of run together, and I'd have this short shudder than would run through my body for a moment, not more than a second. I never contributed it to anything.
 
But here lately, I've still been having the headaches, and now, the things that happened with sounds and resulted in a shudder, instead of every once and a while, I've moved from having them start occuring from once every couple of weeks, to once every week, to now once or twice a day. And the shudder is lasting a bit longer, to the upwards of 5 seconds at times.
 
Having used google, I couldn't anything similar to this, though I'm not sure I looked quite hard enough.
 
Has anyone heard of anything similar happening with the sounds and the shudder? I'm trying to make myself have an excuse to go to the doctor over this.

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 5/22/2005 9:56 PM (GMT -7)   

jmattick,

Hi and welcome to the board.

I get exactly the same thing as you have described (EXCEPT THE HEADACHES). They are petit-mal seizures or simple partials. The first few years they lasted about 5 seconds and now about 15 seconds or so.

I could be totally aware of what's going on around me but I can't respond or I "freeze".

I totally agree with Jennifer-SEE YOUR DOCTOR. Don't let it go or you could run into serious problems later.

I'm 49 yrs. old and have had epilepsy since I was 21 yrs.

It started with only one major Gran-mal seizure and ever since then (1979) I would get these petit-mal's at first about once a month then a few years later, more frequent, then weekly and now daily (sometimes more than one a day) and it becomes more frequent as I get older. My EEG and MRI show that there is epileptic activity in my lower tempral lobe. That's why I'm still on meds after all this time.

My neurologist says it's like an insurane policy, if I didn't take my meds, these petit-mals would turn into full blown gran-mal seizures and I would have also had my drivers licence suspended.

Can you think of what may be triggering these "events" such as flashing lights (from emergency vehicles), certain music or noise, strange smells, PTSD, computer monitors, genetic, head injury etc.

Randy


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 5/23/2005 9:27 AM (GMT -7)   

jmattick,

Oh yeah, there is still something I'd like to add.

As I mentioned before, it gets worse as you age, my employer of 30 years recommended that I go off on Disability.  Well I've been off for a year so far and i have not had one petit-mal.

I guess it was the stress that was causing them from work.
Now my stress comes from my bipolar son.
 
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day


jmattick
Regular Member


Date Joined Jan 2005
Total Posts : 96
   Posted 5/23/2005 10:06 AM (GMT -7)   
Thanks everyone for the push. I needed the help mustering up the courage to give my doctor a call, and now I have.
 
I've got an appointment on Thursday. I guess we'll find out more then.
 
 
Thanks again everyone!

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 5/23/2005 11:32 AM (GMT -7)   
I'll be thinking about you on Thursday, jmattick.  I too had episodes for several years that gradually increased to several times a day, and although I knew something wasn't quite right, I didn't go to the doctor to have it checked out until someone told me I was blanking out in front of them.  I never dreamed it was seizures causing my episodes.  It all made sense once I was diagnosed.
 
So, Best of Luck in finding out what is causing those symptoms.  Don't be afraid to tell your doctor everything and to pursue it until you get answers... your doctor should run the appropriate tests.        Glenda :-)
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


jmattick
Regular Member


Date Joined Jan 2005
Total Posts : 96
   Posted 5/26/2005 9:38 PM (GMT -7)   
Well, I went to the doctor today. She took a look at things, and referred me to a neurologist, whom I'll be seeing next Friday.
 
I've been to the doctor for blackouts, in which I'd be out of it for anywhere from a few seconds to a few minutes, but they seemed to go away, and my doctor contributed them to anxiety, and that was the end of that.
 
Next week will be a fun one. Between a gallbladder ultrasound, a gastroenterologist appointment for my Crohns, and the neurologist, my week is gonna be packed.

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 5/26/2005 10:03 PM (GMT -7)   
jmattick-
I was going to say- You'll need all the energy you can get, so you better eat you Wheaties.  But, now that I think of it, with your Crohn's, I guess that isn't such a good idea, is it?!   lol 
But, seriously, I hope you do ok next week.  Since the neuro appointment isn't til Friday, it will at least give you some time to think of questions to ask when you have your appointment.  Glad to hear from you today...     Glenda :-)
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


jmattick
Regular Member


Date Joined Jan 2005
Total Posts : 96
   Posted 6/3/2005 6:00 PM (GMT -7)   
Well, I saw the neurologist today. He ordered a brain mri and a eeg for next week.

He wrote Syncon or something similar as the reason for the tests. I'm not sure what that means.

And he's also worried about the state of my brain, because when I was 13, I got menigitis, and never got an MRI when I was in the hospital.

So, who knows.

goodwitch46
Regular Member


Date Joined Feb 2005
Total Posts : 241
   Posted 6/3/2005 10:05 PM (GMT -7)   
Hmmm, another word for blackouts is syncope.  I'm guessing that's the word  the doctor wrote for the reason for the tests?   So it sounds like the neuro is going to check out your situation with an mri and eeg, maybe it will shed some light on the situation.  Meningitis as a kid? Wow.  That's something significant.  Keep us updated. Hope your gastro appointment and GB ultrasound went ok...    Glenda :-)
complex partial seizures since 22
lamictal 200mg 2x/d
zonegran 150mg 3/d


kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 6/4/2005 8:31 AM (GMT -7)   
Glad you have the tests ordered. best wishes for some clear answers soon! We are also getting testing for syncope. One neuro told us that syncope can be a primary condition that causes seizures to be secondary.....

Hope you find help!

jmattick
Regular Member


Date Joined Jan 2005
Total Posts : 96
   Posted 6/22/2005 2:21 AM (GMT -7)   
Well, I finally got the results from the test back.
 
EEG=Negative
MRI=Mostly negative.
 
Apparently, I have a small spot on the front right of my brain that could be something. The doctor is contributing it to artifacting from the MRI, but wants me to get another test done in 6 months when my insurance will pay for it again. He is not sure, as if it was artifacting, it should have shown up on all the films from that day, and I was the only one. confused
 
So, right now I am on Bellamine-S and industrial strength Naproxen, neither of which are helping. I see him in a few weeks to see how things are doing.

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 6/23/2005 1:51 PM (GMT -7)   
Sorry you are not really finding answers yet. I hope that he can get you help. Have you had any more seizure like episodes?


Have you looked into testing for other causes of the blacking out...

whiskey girl
New Member


Date Joined Jun 2005
Total Posts : 6
   Posted 6/28/2005 6:31 PM (GMT -7)   
Hi there, hope you get things figured out, i was diagnosed with petit mal seizures when i was 14 and they have recently turned into myoclonic seizures after 20 years...for me they sound similar to your situation...i don't get headaches or anything to do with sound, but i do get the feeling of my finger being stuck in an electrical socket, lasting a split second..my meds have been switched to lamictal which has helped....good luck to you
whiskey girl :-)


stox4pat
Regular Member


Date Joined Jul 2005
Total Posts : 214
   Posted 7/6/2005 3:38 PM (GMT -7)   
Hi hon. I, like the others are very glad that you are taking care of these strange feelings. I could write a book as I am 43 y/o and have been having grand mal seizures w/myoclonic jerks since age 12. So, I may not be a Neuro, but with my experience I should be...LOL! Just remember one VERY important thing, you cn have all your tests come back fine and still have a form of Epilepsy. I am not trying to freak you out, but I have had so many MRIs and EEGs and they come back normal. I have what is known as a chemical imbalance. So, I am sure you all can understand why I am furious with Mr. Tom Cruise. How dare he say tht there is no such thing as a chemical imbalance when 31 years later I am still having seizures and have been to the best Doctors in the Country and they all come to the same conclusion. And my husband is a Doctor, not a Neuro tho. So there you have it. Hopefully it is just stress, but please dont let it go. I understand how it feels as I also have ulcerative colitis. But trust me if i can do it...SO CAN YOU!!!
 
Peace and sunshine,
Patti yeah

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 7/6/2005 5:04 PM (GMT -7)   
Hi everyone,
 
I am on disability for my UC and Epilepsy. yeah yeah
 
 I was fighting to keep my job and not go on disability.
 
I've had UC and epilepsy since 1979.
 
I'm from Canada and my employer of 30 yrs. has reccomended that I go on Disability (not my choice-fought against it for 4 yrs.and lost) through Sun Life Financial and it has been approved, it kicks in Feb/05. It might have been easier for me to qualify because I also have Ulcerative Colitis.
My employer has put me on medical retirement since April/04 with full salary until my disability insurance starts. The amount of my disability is 70% of my salary.
 
That's not so bad considering I am the main bread winner but thank god my wife works.
 
I agree that there are a lot of people out there that don't really need it but make up stuff so they can get benefits and not work. I'm only 48 yrs old  and I'm not dying (yet)so maybe someone will hire me part time since my UC and EP has been in control (remission) for years.
 
Randy :-) :-)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day
20mg-Celexa/day

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