UPDATES... Where are we all at?

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djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/3/2007 3:25 AM (GMT -7)   
I thought it might be nice to just have a thread where we can let everyone know how we are doing, what we are up to etc... since I know some of you are going through tests and med changes. I suppose its only fitting that I start the ball rolling since this was my idea!
 
For me, there isnt much to say really! I am still trying to get a neuro appointment within the NHS (Since I cannot afford to pay for private consultations). I have been waiting NEarly a year now and I got offered one appointment in Liverpool (about 300 miles from my home) when I have no transport! I had to turn it down and told them to offer it to someone else as Im sure there is someone in Liverpool who needs it! Hence, I am STILL on the waiting list. Im still seizure free after my seizure in December 2006  where I broke 3 teeth so thats 7 months now! :-)  Only got to do another 5 and I can re-apply for my driving licence. Although the cost of running a car and being at uni seems to be too much so I may not get a car. But if I have a licence, it means I can hire one for the weekend. Im still taking 1600mg Carbamazipine. Nothing new there. I think thats about it really... nothing else to tell.  
 
Darren
 
Now its your turn......
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.
 
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HEDAMAN
New Member


Date Joined Jul 2007
Total Posts : 1
   Posted 7/4/2007 9:54 AM (GMT -7)   

Hi Darren,

I'm new to this chat thing, so i really don't know how it works.  I am so busy with the family and work that I only get online in the evening maybe 2-3 times a week. I live on the other side of the pond in California.  I first was diag with epilepsy when i was 13 or 14.  I am currently 42.  At age 16 my events were finally under control. I was able to get my drivers license at age 17.  I was seizure free for 10 years, so my doctor took me off the meds and told me it was not unusual to outgrow it.  This was just around the time i meet the girl that would become my wife.  He did one last eeg, and said that all was clear, go on and enjoy my life!!  Thing were great, I got married 3 years later and know have two great kids, ages 8 and 11. 

Well, about a year ago I started noticing that I was getting this strange feelings and i started lossing seconds of time.  I kept putting it in the back of my mind as stress.  Things at work were very stressful and trying to balance work, family and everyday life is hard.  I finally got the courage to seek help.  I randomly picked a nero and he did a eeg and mri.  The eeg was clear, the mri show something in the left tempral loop.  I had been okay for 25 year and now i had epilepsy again!!!  How could that be.  This just is not fair!!  I still say the stress did it.  Well the nero started throwing drugs at me. I felt like alice, one drug makes you big another makes you small.  After much harrassment from my wife, i switched doctors.  Currently i am on keppra 1000mg  x2 a day and tegretal 600mg x 2 a day.  I still have aura's, (which i never had as a kid, might i add)  but the seizure are down to about 2 a week.  I know the doc. Will bring down the teg. Level and up the keppra next month.  They all feel i am a perfect example for the brain surgery.  I don't even want to go there.  I can live with lossing 5 seconds here and there.  But i do find i am upset alot and depressed from time to time.  Maybe the drugs or the scar tissue?? Those are the things i would like to get rid of most.

Thanks for the ear

Dennis

Reason for Edit:

I have changed the case of your post from BLOCK CAPS to Mixed Case. (See Rule #14: http://www.healingwell.com/community/default.aspx?f=46&m=106997) Writing in block caps is considered to be rude and is shouting.

Post Edited By Moderator (djdaz_1985) : 7/5/2007 3:14:01 AM (GMT-6)


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/6/2007 12:43 AM (GMT -7)   
Hi there Dennis and Welcome to HealingWell! yeah
 
Thank you for being the first to share your story with us. Your case sounds very similar to my mums. She was diagnosed with epilepsy in her teens, had a period of "remission" and when she got divorced (Noticing the stress link?) it came back. I too take Tegretol but take 800mg twice daily. Hopefully the doctors adjusting your dosages will help you regain control like you had before. If it can go away once, then it can go away again, so this should give you some light at the end of the tunnel and something to aim for.
 
Best Wishes
 
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.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Rooz
New Member


Date Joined Jun 2007
Total Posts : 6
   Posted 7/6/2007 10:21 AM (GMT -7)   

Djdaz - There is never anyone in the epilepsy chat room.  I'm wondering if there is anything you can do about that. Is there any possibility that you can schedule a series of chat times in the epilepsy live chat room? 

                                 Much appreciated,

                                         Rooz

                                     


djdaz_1985
Veteran Member


Date Joined Jan 2006
Total Posts : 2408
   Posted 7/6/2007 1:47 PM (GMT -7)   

Hi Rooz,

I did a series of chats when I first became a MOD but nobody seemed very interested. I would certainly host them if the interest was there. What I will do is bump up a past thread I started with a poll on it and see what reaction we get. I dont see any reason why we couldnt do them. I think its a great idea.

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.
 
Moderator - Epilepsy Forum
Co-Moderator - Depression Forum
 
Help support the forums so we can support you:  http://www.healingwell.com/donate
 


Another Day
Veteran Member


Date Joined Mar 2007
Total Posts : 1055
   Posted 7/6/2007 10:28 PM (GMT -7)   
Here's my update. Most of you know that I was diagnosed with epilepsy last August at the age of 55. My seizures are still not under control and I have been on several medications. I am currently on Keppra, Topamax and just last week my neurologist added Klonopin because for several months I have been staying awake until daylight and having seizures during the time that I am struggling to go to sleep. I then get some sleep during the day. I have been very lethargic. I am fortunate to have a good neurologist at Vanderbilt University Hospital who is easily acccessible. He is going to admit me again for the four day EEG or how ever many days it may take, they will be adding a lot of lights and loud music which I am having problems with. I am a little frightened because he said he is concerned that there is something else going on besides the seizures. They will be doing some other studies while I am there, not real sure what. As most of you know, it takes a while for the EEG rooms to become available. I am not looking forward to it, but I want to live a better quality of life. I know I am going to go out of my mind when they had in the lights and loud music, but we have to find out what's going on. I can't even go to church because of the music, so I'm just waiting for the phone call to find out that they have a room for me.

Best wishes to everyone!

Carla
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