Any thoughts????????

[nicolej1024]

Hi,

I am not the one having seizures , its my sister. She is 24 and has been diagnosed for 10 yrs and on every anti-epileptic drug you can think of. She has numerous absence seizures daily and grand mals at least 2 a month, more now. Her memory is getting worse. She doesn't remember things from our past that she should. She is not working b/c my dad is so overprotective of her so she gets SS. She just recently switched neurologist's and he told her he can't help her, he doesn't know what to do w/ her. Any opinions or advice is greatly appreciated.

Nicole

[RobinN]

My daughter has been helped by neurofeedback therapy.
http://www.eeginstitute.com
Her seizures have been greatly reduced, and I hope to see them controlled soon. She is not on any meds. Traditionally it isn't covered by insurance, but I hope to change that. Rebecca's neurologist wrote a prescription for it. You might see if your sisters will.

You also might check out the alternative therapies here:
http://www.coping-with-epilepsy.com/...ive-treatments
Welcome, she is lucky to have you.

[Bernard]

Hi Nicole, welcome to the forum.

Check out this thread: Proactive Prescription for Epilepsy

... and this one too: Drug Resistant Epilepsy

... and the links in my signature. Hopefully you will find something she hasn't tried that might help.

[Georgiagirl88]

Hi there,

I'm sorry about your sister's situation and seizures. I would get more opinions. I actually had that happen to me just prior to me being diagnosed. I had seen so many Drs. If I had listened to him(and all the other's as well) ..I still would not be getting treatment for my seizures.
I just think there is hope in even the most difficult situations. There are so many treatments and new ideas and new things that Drs. can try ( look at cancer patients or other diseases) I just would not accept the answer there is nothing he can do. I would get other opinions. She is so young and there must be some other options to try! Best wishes for your sister!

Michelle

[skillefer]

Hi Nicole! Welcome to CWE. We're a pretty friendly bunch, so don't feel scared about asking questions. Check out the threads that Bernard suggested. Also, has your sister looked into alternative treatments? Have your sister get another opinion from a different neurololgist. There's lots of treatments out there...from vitamin supplementation to eeg neurofeedback all the way to surgery. And I know that her memory loss is frustrating...but try to be patient. There are lots of things I don't remember...and I know that it hurts my hubby that I can't remember certain things like where we went on dates when he was courting me, or things that he said last week...but he understands. Some of it is the meds fault, and some of it is the seizures fault. Trust me, your sister's memory loss is probably more frustrating for her then it is for you. So try to be patient.

[residualvisuals]

Hi,

I am not the one having seizures , its my sister. She is 24 and has been diagnosed for 10 yrs and on every anti-epileptic drug you can think of. She has numerous absence seizures daily and grand mals at least 2 a month, more now. Her memory is getting worse. She doesn't remember things from our past that she should. She is not working b/c my dad is so overprotective of her so she gets SS. She just recently switched neurologist's and he told her he can't help her, he doesn't know what to do w/ her. Any opinions or advice is greatly appreciated.

She's not the only one, my epilepsy meds have treated my memory pretty badly. I can't remember my high school graduation, and any time graduation comes up for anyone I get a little upset because I instinctively try to recall something that's just not attainable for me anymore. My dad keeps suggesting memory drills, but they don't do any good for the things missing from my long term memory.

I just try to focus on the present as much as possible. What's here and now, and keeping it in good and pleasant order, is much more important than remembering anything that may have happened in the past.

I also found somewhere online that a doctor had prescribed Alzheimers medication to someone who had been suffering from some pretty serious memory loss due to their epilepsy meds. I'll have to try and find it again, and post it here. I've been meaning to mention it to my neurologist as well.

I really hope you guys find a neurologist or epileptoligist with more motivation to help than the one that told you there was nothing he/she could do to help. Best of luck.

[RobinN]

Rebecca lost her memory for two months. It was unusual and very scary.
She is has high levels of mercury in her system, as well as two other metals (antimony and tin).

There is some belief that Alzheimers is adult onset Autism. Some with autism have high metals in their brain. As trusting as I am, I never knew until I started on this journey, that most vaccines when Rebecca was little had mercury in them. I also didn't know that "silver" fillings (amalgam) are high mercury. Trust conventional medicine to keep you safe and healthy... I actually had to get a prescription this week, to buy Rebecca a bed that didn't have high Antimony in the mattress. Most of us are unaware of the high levels they use and what is considered "safe".

[residualvisuals]

I actually had to get a prescription this week, to buy Rebecca a bed that didn't have high Antimony in the mattress.

It's good that the doctor wrote a prescription for that, I could see that being expensive... but where on earth do you find one of those? Or would a better question be how do you find out the levels of those metals in mattresses that you buy? Is it stated somewhere on the tag?

[RobinN]

Just know that all mattresses have this in it. It is used as a flame retardant. It is illegal for the manufacturer to sell you a bed without this, unless you have a prescription. So you have to ask your doctor specifically for it. It is used in treating children's pajamas too.

It is not much more expensive (I guess about $100 more). It is the organic mattresses that are expensive (about double in price, if not three times). If you Google antimony and mattress, you can read up on the amount that is considered safe, and the amount that is in a mattress. It is possible that there is a plastic cover that might keep some of the toxins from leaching into your skin. Some bodies can eliminate these types of toxins, if they are in the best of health. For some reason, Rebecca's body is holding on to toxic metals. I have been researching this, and am considering a safe protocol for chelation, but I want her seizures controlled before I prepare for this, as it can be difficult during the chelation, but health can benefit greatly.

I think this is why she regressed in speech, following her multiple vaccines around the same time, and again at her booster shots at the age of 5/6. Tetanus and flu shots continue to have mercury in them, as do some vaccines.

[hawke86]

Hi Nicole,
Welcome to the forum. Everyone here is cool and nice. I hope you enjoy it here. Again Welcome to the forum. I hope your sister's seizures will get under better control.