The lobectomy was my decision cuz my seizures were becoming more motor and the choice of meds was running out. The fact that I worked with elementary kids at that time probalbly played a big part of my decision to be cracked open. The kids were actually a big support team for me.
The specialists I had in Mn felt that my seizures were probably moving too fast for an EEG to pick them up. So a lot of testing was done prior to surgery. Maybe your seizures are too fast to be caught on a general EEG. Or as you suggest, "too deep".
The young lady(Dana) pictured with me had the same surgery as I did some 4or 5 months prior to mine. We had the same med team. They thought it would be good for me to speak with someone who had the same/similiar surgery that I was scheduled to have. We made a good match and have become bests of non-blood sisters because of this union. We continue to talk with others about our surgeries or anything about ep that one is concerned about.
Hope you keep adding hours to your seizure-free period. Keep sharing with us.
I have been on those that you have listed plus many others. I am currently on Keppra XR and Oxcarbazepine(Tripeptal). Before my lobectomy I was on Topamax and Lamictal in additon to the ones I first mentioned.
This roller coaser ride of meds has been a diffiicult ride. I too don't understand why the doc is against increasing your meds. Mine went up and down many times.
Most of my EEGs were negative for seizure activity. The sleep deprived EEG was most effetive for me in regards to showing seizure activity. My meds were also decreased prior to these tests in hopes of giving the seizures room to surface. Have you had an EEGs of this type?
I haven't any info to share with you about your sensations. But I would to share that this is a wonderful site to learn, encourage, and share with others who live with or have a loved one with ep. When you have the chance explore some of the other conversations and you might just find some useful any info or make a new friend.
Like Candi, most of me EEGs were w/o any seizure activity but the seizure activity was happening.
My seizures changed over the years. They initially looked like the simple partial(absence) type so the docs put me on the med that was for the petit. When seizure activity did show it came from an area that didn't produce absence seizures. A now med regime was soon begun.
As more time passsed, the seizures continued to change in severity. No tonics but just more motor( walking around, changing clothes, taking phone calls, etc.) I moved about on automatic.
One test that helped my docs locate an seizue origin site was the sleep deprived EEG. I was to stay up the entire night prior to the test. Also my meds were decreased in a hope that the absence of my "full' med dosage would bring on seizures that could be caught on the EEG. It did what was hoped for. This ewas successful for me but a decrease in meds prior to such a test hasn't always been effective.
Thanks for staying with your BF and searching out info.
Oh boy, this is bad news. I'm so sorry to hear about this confliction.
Remember what Candi and I said about his not knowing how to receive support/love because of earlier experiences? Plus possible embarrassment?
I am also sorry to hear that he doesn't what to partake with us. It has helped me quite a bit to be able to openly share with those who understand. Once again, maybe he simply is not used to getting honest support.
As for you, hang in there and continue to be his friend, even from a distance. I think you should grant him his time to sort this out cause when we are pushed we tend to naturally shove back which can create further unwanted division.
Please keep in touch with us if simly to drop in to let us know how you're doing. My email is open to you also.
I understand your friend's pain. When all this started, people would simply disappear whenever I had a seizure in their presence. Very few were still around when I came out of it. Iwas always open with talking about my ep but few wanted to learn. I was always told by others that they had no problem with my ep but would never see them again once they witnessed it. It bothered me in the beginning cause I was still learning about it and wondered what I had done to make people avoid me.
Superstitions and those "old wise tales" are very harmful. I spoke to a young lady with ep who was Liberia. Most of her family wouldn't visit her because they felt she was contagious. Those who did often brought their own eating utensils for fear of contamination.
HIstory has told me that many of the superstitions of the Black community are from our African ancestors. Individuals with ep were thought to be possessed and were shunned/kicked out of the town/villages because of fear of a possilble demon having taken control of the individual. The family was shunned too. If the village doctor had no answers or was unable to treat this individual, it was readily assumed that it is "the work of the devil".
This feeling was still strong in my grandparents' generation. It was thus carried down to my parent's generation. Fortunately, medical care had become more available to my culture thus generating newer understandings of many unexplained illnesses.
The pain your friend feels about having seizures may be the cause of his rejecting your friendship. Bullying is rough. I can't say that I was verbally bullied but the isolation I was experiencing certainly did hurt.
If your friend would like to share but not openly with us, please let him know that I would be happy to share with him via my email. You are also welcome to share with me via my email. Simply check my story for it.
There are many good books about living/dealing with loved ones with ep. Check Amazon or the library. I'm always on Amazon looking for a new book on ep.
Hope he had a "happy birthday".
Hang in there. We are here to give the both of you whatever support we can.
Wow, that's a shocker!!! Thank you for researching and wanting to stand beside him with love and support. You're a special lady and a true full-time friend.
This gentleman friend might simply be embarrassed about it. There is nothing to be embarrassed about.
Right now, I suggest that you try to keep in touch with him to let him know that you are concerned for him. Not sympathy but genuine concern. Think about a gentle approach like an occasional phone call or maybe a simle greeting card.
He might be feeling this way because of how he was treated in the past. Ridiculed, rejected, or avoided can make someone very wary when someone does show a genuine like or concern becuase they are unfamiliar with how to respond. I'm speaking from personal experiences.
When my ep started in '75, most of those I know(like 99%) quickly disappeared. A boyfriend in my late teens or early adulthood was basically nonexistent. I do have a few friends including a few guys who have been with me from the start.
Many people with ep do feel that they are a burden to the family as well as a hindrance the friends. Many might feel that being concerned about a possibel seizure occurence might dampen the fun of others.
It is important that he understands that you want to be with him and that his seizures are a matter that you wish to suport on. It is also very important that he understands that you are with him for him not because you have any pity on his epilepsy.
Be patient but do your best to remind him that you want to be his friend.
I wish you well. Thanks again for wanting to be a part of his live.