staying at home

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try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 12/26/2004 7:58 AM (GMT -7)   
 I hope everyone has had a safe Holiday.Xmas Eve was wonderful for me. I went one day without any seizures which was great.Spent a wonderful late afternoon with a close friend and had dinner there.  My husband has a twin brother we stopped there afterwards. Their house was so beautifully decorated. But the lights really got to me so we only Stayed a short time. Xmas morning I had so many seizures .The first I fell into our bedroom door hit my head and bruised my ribs after that my husband got up an ended up having to give me diastat to stop them . After a long nap we went to my sons for dinner . There I had a pretty good seizure. The doctors are pretty sure it is because of his father I have them which puts him in a awkward possition .So I just decided that until the Eplileptic Clinic can really help me I just want to stay home .The medication has not helped yet that they put me on. The doctor we saw said I should really prepare myself for surgery. I am scared and frustrated. thanks for listening      
       Mary                                                                             

kayakmom
Veteran Member


Date Joined Jul 2003
Total Posts : 585
   Posted 12/26/2004 8:14 AM (GMT -7)   
Mary, I am so sorry that you had so many seizures on Christmas! I am sure it is so frustrating that the meds are not helping!

I will pray that the epilepsy clinic will indeed have help for you very soon! Hang in there!!

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 12/26/2004 10:37 AM (GMT -7)   
HI Mary, I am glad you had one day off on xmas eve, but sorry you had alot on xmas day. It does make sense. The lights at my boyfriends house last night were really getting on my nerves too. I hope that the epilipsy clinic will be able to help figure out how to treat your properly. I hope you are feeling better today. Tracy
Tracy
1000 MG daily Keppra
& 3 other non AED meds
Wishing Joy to the world


Pumpkin2
Regular Member


Date Joined Oct 2004
Total Posts : 28
   Posted 12/26/2004 4:49 PM (GMT -7)   
Hoping you start to do better.

donna

scott_k6466
New Member


Date Joined Jan 2005
Total Posts : 3
   Posted 1/5/2005 10:33 AM (GMT -7)   
Mary,
I'm new to this site but I was in a similiar situation and I'm still sort of. I've had epilepsy since 1990 most of the seizures were small, approximately one or two gran mals a year. Last November while at work I had two gran mal seizures in a row, I eneded up being taken to the hospital, a few weeks later another MRI was done and a benign tumor was found next to the scar I had on my brain. After several more tests were conducted the docs wanted to perform surgery to remove the scar and tumor. I conducted some research on my own, due to negative possibilities resulting from the surgery I wanted to try everything else before opting for the surgery. I was able to get into a study and it has been working great!. After the two gran mal seizures and prior to the study I was up to 3200mg of trileptal, 3000mg of keppra, 100mg of zonegran and .05mg of sodium a day. After the seizures started being controlled by the study drug they would reduce one of my "base meds" and increase the study drug every few months. In each reduction of "base meds" parts of me are starting to come back like memory, speech and my emotions aren't as strong. If I could give any advice, look into the surgery and the negative possibilities then decide, also look into a study, it's been working great for me.

try2bhappy
Regular Member


Date Joined Nov 2004
Total Posts : 163
   Posted 1/6/2005 9:28 AM (GMT -7)   
Scott,
This Epileptic Clinic that I have started to go to do have studies that hey do. It is at a teaching hospital.I will say that the past six months I have been on alot of meds. When my hhusband took me there they took me off of two meds and put me on Zonegran. I also am taking Keppra.Dilantin and klonopin. I have been on an emotional rollercoaster taking and changing so many meds well It appears the zonegran with the other meds may be the right combination. This is my fourth day with out a seizure. Well it will be at the end of the day. I am just so happy that I have gone this long. I started out very negative about changing DRS. but this could be the begining of a very long but good haul for me. I just started noticeing that alot of people seem to be on some amount of Zonegran for seizure controll. I still just want to stay home and decided that for a while that is o.k. My only thing that I am doing publicly is going to church. I cause myself alot of stress which that alone can increase seizures. So for a month or two I am not going to feel so guilty . Mary

Daisy9980
Veteran Member


Date Joined Sep 2004
Total Posts : 775
   Posted 1/9/2005 9:05 PM (GMT -7)   
Staying home and relying on others sucks! But we are lucky to have people in our lives to help us. WE are so lucky to be home and get to chat on this online forum. I was lost without these forums. I feel bad for so many on the streets or others without internet, that have chronic illnesses and can't come here. I find these forums a great stress relief. Someone can always relate to what you are going threw. Mary, I hope you are feeling better and your new med combo is keeping your seizures down. 4 days sounds great and since the stress of the holidays are gone that will help alot too I think. Take care talk to you soon, Tracy
[color=purple>Tracy</FONT>
<FONT]1000 MG daily Keppra[/color]

[color=gray>&]

<FONT color=gray>Wishing Joy to the world[/color]


chychy
New Member


Date Joined Sep 2012
Total Posts : 19
   Posted 8/4/2013 3:40 PM (GMT -7)   
I wonder if anyone ever chats in the epilepsy room and if so what time should I try been feeling very alone and down to chat with someone who knows what I am going through I would love so much

hdinon
New Member


Date Joined Aug 2013
Total Posts : 4
   Posted 8/4/2013 5:01 PM (GMT -7)   
chychy,
I'm new to this site but I can probably chat in 1/2 hour for a little bit if you need someone to talk to. I'll check back in a bit
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