10 months since first siezure and reaching out

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SarahSmith
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/3/2008 8:08 PM (GMT -7)   
Hi  everyone,
 
I am writing in the US and I am finally seeking some feedback outside the few Dr's I have seen in my community.  I am going to share my long story.  It is a mild one, no terrible stuff - and I am grateful for this - I look forward to any insight you all have.
 
Back in August 2007 I was working out and doing alot of spinning around when I suddenly found myself lying neatly on the floor of the gym, next to my exercise mat, knees bent.  I had no idea where I was it first, I had not hit my head.  Once I realized where I was I got up, realized I was really nauseous and managed to actually drive myself to the emergency room where much conjecture happened.  We all went on as usual.
 
I continued to work out but any aerobics or dance class and I would get really dizzy and need to step aside.
 
Then about a month later I was at work at fell out of my chair.  Arms above the head, jerking, not conscious for about about 30-60 seconds and then awake, disoriented, nauseous, get the bathroom, throw up etc, and must lie down for at least 6-12 hours. 
 
Now, I can feel them coming on - I do not feel well, want to put my head down and typically say something like, "I do not fell well, I really do not feel well" and then I'm gone.  I have had about 12 total.  4 prior to getting on "trileptal" antisiezure medication in October.  My iron is normal, sodium normal.  What gives?
 
Last actual siezure was in March and since then I have had several moments where I have felt like one may be coming on, but I do not have a siezure.
 
As I think back on strange feelings that are similar, I can think of a time in my 20's (I am 44 now) when I had simialr preseizure mental states, almost like a waking dream state.  They started as intriguing, with my grandmother prominent, they they got negiteve and scary in a generalized sort of way.  I saw my naturopath at the time, told her I wondered if I was goign crazy and hallucinating) and she asked if I was eating right and I was not. I changed my eating habits, the event stopped. 
 
Over the last year I have also experince similar strange intensity of feelings - overwhelming feelings of love and compassion while just sitting at my desk at work.  I chaulked it up to my spiritual intuneness for lack of a better expression.
 
Now, I wonder if all this activity is due to some brain activity that I do not understand.
 
Put this all together with being a mildly moody, kinda philosophical person.  What does it all mean?  Is it related to hormonal changes?  Not MRI or EEG show anything.  I do not smoke, drink, could get more exercize, but am not overweight, etc, etc. 
 
Even if I never know why it is happening, is there something I can do to make this stop? Read about Chakra's, have dreamt about lapis lazuli, have dreamt about my "ghosts" inside and need to set them free - regrets and resentments I suppose, really would like to start driving again, feel not quite right most of the time, feel side effects from drug coming on more regularly.
 
Who is getting therapy, who is getting releaved of this and how?  What spirtual elements have folks considered?  Is there anyone out there doing research the I could contact?
 
Lots of thoughts.
 
Thanks.
 
SS
 
 
 

Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 6/4/2008 4:28 PM (GMT -7)   
Sarah,
 
Darren, our moderator is out of pocket right now.  I know he could be much more helpful than I.
 
I am wondering, have you had the 3-4 day in-patient EEG where you are monitored and videoed 24-7?  If you have not, I would highly recommend that for you.
 
The test isn't any fun, you will have your very worst hair day for 3-4 days and you won't be able to take a shower the entire time, but it is not painful at all.  In my opinion, it is the very best test you can have to find out about epilepsy and what type of seizures you are having.
 
Take care!
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 6/9/2008 2:26 AM (GMT -7)   

Hiya,

3-4 day EEG's are the best option in terms of diagnostics IMO. As Carla has said though... they are not much fun. Is there anything which is a common factor in your seizures? Loud Music, Computer screens etc...? Spiritually, it depends on what you believe. Other treatments for epilepsy include acupuncture and chinese medicine but these have not been scietifically tested. If you are going to consider them, please make sure you go to a properly licenced and certificated chinese doctor.

Let me know if there is anything else I can do for you

Darren


Everyone has a guardian angel. They help pick you up when you fall, comfort you through your times of need and help you appreciate the times when things are going well.
 
"A gold medal is a wonderful thing. But if your not enough without it, you will never be enough with it." - Irvine Blitzer (John Candy) in Cool Runnings
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
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SarahSmith
New Member


Date Joined Jun 2008
Total Posts : 3
   Posted 6/9/2008 6:27 AM (GMT -7)   
Thank you.  It is great you guys are out here helping!  Leslie

Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 6/9/2008 7:09 PM (GMT -7)   
Darren,
 
I can't tell you how glad I am to see you back!
 
Big Hugs!
 
Carla

Moderator, Allergies/Asthma
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 
 
Epilepsy, asthma, fibromyalgia, GERD, depression, hypothyroidism, tinnitus


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 6/9/2008 8:33 PM (GMT -7)   
I don't know if it was a dream or if it really happened.
At 3am yesterday, I awoke and my arms and legs were jerking
all over. It was a terrible feeling. Worst thing I've ever felt.Lasted
only a few seconds, I believe.
I had a voice. (I didn't think I'd be able to speak) I screamed
for my husband. He held me. The cat got all involved with
my screaming -- loving cat! It happened again after I fell asleep.
The second time wasn't as severe. I didn't scream.
Pamela Neckpain
Chronic Pain for 6 years

Beyond my Control
New Member


Date Joined Jun 2008
Total Posts : 16
   Posted 7/11/2008 3:11 AM (GMT -7)   
Hi Pamela,

I'm not a medical doctor, which I believe is not a bad thing, when trying to find out something as complex as what is actually happening to our own brain. Pain is directly linked to our brain, and Dr's are guided by text books which are - quite often - generalized. My advice, (If wanted) is keep talking to as many people as possible about your concern's, after all, nobody know's your battle better than you do. I found out the hard way, I truly hope you will find an easier way.

Take good care, all the best, Stuart (author) Beyond my Control
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