tough seizure last night

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c.michele
Regular Member


Date Joined Feb 2005
Total Posts : 32
   Posted 2/12/2005 3:26 PM (GMT -7)   
Hi All,
I'm new to the site. Felt it would be nice to talk to others that are having the same kind of issues.
4 yrs ago this is how my life was turned up side down:
collapsed at work suddenly
4 grad mal seizures in a row
taken by ambulance to hosp.
admitted for 1 week and saw about 4 different types of dr's trying to figure what was going on
All test results were normal and released
I'm sure you've all had the same experience with the dartboard of dx (where ever it sticks it must fit) their guesses ranged from, hypoglycemia to anxiety attacks to syncope, blah,blah,blah
From Aug to Oct I had 15 seizures 
 I kept a journal of the events thinking that it might show me a pattern
One day my husband and I said "this is it, we'll do whatever it takes to get answers". I insisted on seeing my PCP with thoughts of going to Cleveland Clinic and while sitting in his waiting room fell out in a grand mal. He said  "she's having seizures" my husband couldn't believe it. I was referred to a neuro who is the greatest!
I was dx with catamenial seizures related to my menstrual cycle. I've been on Lamictal ever since. It took me 2yrs to get controlled and felt I was clear when one day I fell out at work and couldn't figure out why. Later my neuro said it could be related to a bladder infection that interferes with the absorption of the Lamictal. 
 
This last week has been like watching an old movie; I've had 5 seizures this week ranging from multiples to single seizure episodes. I tested for a bladder infection, it was normal, although my Lamictal level has dropped from 10 to 4 without reason.
Last night I had multiple seizures while driving with my husband. Since they were in a car I was confined and jammed my body alot between the seat and dashboard. I always have a terrible headache after and take migraine med. to help. Scared my husband when about 4 hrs into my recovery I started talking like I was mentally disconnected. Have any of you experienced this kind of disconnected talk? Another thing I've noticed lately is that I crave sugar when I recover. I'm really rung out today, mentally slow, sleepy and extremely sore.
Any thoughts? 

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 2/12/2005 5:34 PM (GMT -7)   
It sounds like you really have had a tough time lately!! I know that my son takes a long time to fully recover from his harsher seizures. The rung out, mentally slow, sleepy and sore part sounds so like him....

It can be hard to figure what triggers the new bout of them. Sometimes meds become less effective over time, though I do not know if Lamictal does that... certainly your level being so low is part of it?

DO you have a med just for clusters like that when you have a bunch? Some use Diastat, Valium, Clonipin ....I think a Dilantin loading dose too....Might be worth asking your neuro if this might help you when you have so many?


I sure hope you feel better soon and this spell is done!! Take care! Ginny

Minnie66
Regular Member


Date Joined Jun 2004
Total Posts : 82
   Posted 2/13/2005 10:37 AM (GMT -7)   
Hi..
 
It sounds logial the explaination of the Lamictal, and not absorbing it.. and flare ups of the seizures... It took my docs about 2 years to realize, because I was having terrible stomach problems, IBS, going constantly... could not keep any food in my belly... It was the worst time I ever had with seizure control also...
And yes.. that is such a normal feeling wiped out after an episode.. It definetly wipes a person out !!! I was on the couch for 2 years when I had no control of my seizures, and these seizures were not Gran mals, mostly comlpex.. So I would imagine Gran mals would make you feel even worse !!
Also, being a woman, I have the same problem too, diagnosed with most of my episodes around my cycle... too bad it took 12 years of my disorder for a doctor to believe me !!!  Now I find out later in my life that their are Special Neurologists that deal with Catamenial Seizures....
Feel Good... :-)

diagnosed seizure disorder 1989
reason, angioma in L temp lobe
seeking surgery options
Keppra 750mg
Zonegran 200 mg


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 2/13/2005 10:42 AM (GMT -7)   
c.michele,
 
After reading your post, I felt I had to share my story.
 
I've had Ulcerative Colitis (very similar to CD) and Epilepsy since 1979.
Both conditions are stress related (in my case).
 
I too colapsed at work (thank god not wile driving).
Also woke up in the ambulance on the way to hosp.
Although I've only had one gran-mal seizure since 1979, my EEG keeps showing epileptic activity in the left tempral lobe.
I was able to keep my drivers licence (untill Dec.2002 when my licence was suspended for medical reasons) but was on lots of meds and the big payoff was the many side effects.
 
I've had everything under managable control until 6 yrs ago, my then 12 year old son was diagnosed with bi-polar (manic depression) and has been puting this family through hell and stress like you wouldn't believe.
 
Then my petit-mal siezures became more frequent(almost daily) from the added stress in the household. 
Then my UC flare-ups started to be more frequent as well and more severe. As a result I had to increase my UC meds, and since this effected the metabolic rate of my epilepsy medication, it has to be increased to the point where I am a walking zombie and afraid to go out for fear that everyone would think I was a drunk. This shows me that there are still so many people that are still uneducated about this topic.
Some people still think that if you have epilepsy, you're possessed by satin.
 
This effected my social life big time and causes depression.
It even effected my personal life.
My own family was embarrassed to be seen with me. I just had to learn to deal with it.
 
In a lot of cases stress is a major trigger for epilepsy, CD and ulcerative colitis, if that flares up then you will have to increase your meds and that can throw everything out of wack.
 
Randy (Ontario, Canada)

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


c.michele
Regular Member


Date Joined Feb 2005
Total Posts : 32
   Posted 2/13/2005 11:38 AM (GMT -7)   
Thank you for your support!
I feel much better today and much more mentally clear. I'm still playing it by ear as far as the cause of the most recent set back. It's a fine balance the human body and I grow to appreciate how delicate it is. I need to wait to see if the seizures are related to a current illness that's been undetected. I am concerned over the sudden drop in my levels, simply because it's taken me a long time to get where I am and still able to function on my job. Certainly I could have gone on much higher doses of meds initially and been controlled but also a zombie. I'll have my levels checked next week and hopefully they'll be within range. Keep you posted.
Thanks again,
cm

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 2/13/2005 12:13 PM (GMT -7)   
HI CM. Sorry to hear about the seizures. It can be really tuff sometimes. It sounds like you are getting whiped out during your post ictal period. I was in bed for about 2 weeks after my first Grand Mal (tonic clonic). It was a shock so I was knocked out. Sorry to hear your levels dropped so without any reason. I hope they can adjust your meds so you can have better control. WEll take care, Tracy :)
 


Searchin'
Regular Member


Date Joined Feb 2005
Total Posts : 70
   Posted 2/13/2005 9:34 PM (GMT -7)   

C.Michele; My adult son has been controlled pretty well with Depakote and Tegretol.   He didn't do well on Lamictal.  It takes time to find the right drugs.   Those grand mal (tonic clonic) seizures can be scary and awful.  I say this so you will know that we understand what you have been going through.  Best wishes for good health.


c.michele
Regular Member


Date Joined Feb 2005
Total Posts : 32
   Posted 2/14/2005 7:35 AM (GMT -7)   

Hi all,

I'm feeling much better and back to work, praying I have no episodes today. I'm fortunate that I have alot of support at work and have only had about 5 at work over the last 3yrs. It was a difficult transition from one job to the next, much apprehension in a new environment with others I didn't know well or how they would react if I had a seizure on the job. They all have been great!!! Very compassionate and helpful. I've never been one to ask for help and this puts me in a position where I have no choice. (Life lessons)

Thanks again for your support and empathy,

cm

 

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