I hope the new meds help you.

Just wanted to write an update you all, as I havent been in the forum much and I'm so sorry. Between my neurologist, family doctor and my psychiatrist, it's really hard to keep track of anything lately including time and my memory

Anyway, to update you.. I still am having some seizures, however they are not as severe as they were. I can now atleast feel a warning and know when I am going to go into a seizure.

I have been very dizzy, and off balance lately and the neuropathy is in full force in my feet and my legs have been bothersome a lot. My neurologist wrote me a script for a new cane ( I was using an old one that belonged to my grandpa )

On May the 12th Fibromyalgia Awareness Day I will be spending my Day in our local newspaper. That's the good news. They our doing a story about me for fibromyalgia awareness.

The bad news is I will also be spending the day at the hospital with my neurologist and my support team (hubby and sister in law) as I have a spinal tap a.k.a lumbar puncture done to test for, (demylianation Multiple Sclerosis,Lyme disease, gliosis,etc.) and have labwork done ANA testing for auto immune diseases like lupus.

I told my neurologist to just put me in a big tunnel maze and feed me cheese, cause I feel like a lab rat ( You have to have a sense of humor) with this or else we are all gonna fall in a dark pit of depression.

Its hard to keep it together, trust me. I cry, I yell, I get in arguments with my husband. Its only right now at this very moment when he is at work, the kids are at school, and there is total silence in my house that I can sit and write this and feel halfway in a sane state of mind. Dont get me wrong. My neck is stiff and my shoulders ache (its gonna rain here) thats how I know

Okay enough rambling, have I put anyone to sleep yet?

I could tell the story of the last time I had a spinal tap and lost feeling in my legs for 5 hours!

..... to be continued

For those of you who don't know, my youngest daughter had a brain tumor partially removed when she was 4 years old and had another operation when she was 12 to remove the right temporal lobe of her brain to stop grandmal seizures. When she had the first operation they could only remove part of the tumor because itwas in her brain cells and had grown in my womb as she had grown. They done radiation for 6 weeks to stop the growth of what was left. The seizures stopped for a while then when she was about 8 they started up again and when she was 12 she said she couldn't live with seizures as bad as she was having them and they took out the right temporal lobe which controlled them for a while. She started back having them when my ex and I split up and the stress got really bad and she has had them ever since. She is in councelling and takes the meds. and does ok for the most part.

The good news is that the tumor that had to be left in when she was 4 has totally disappeared. I prayed for 14 years for it to be gone and when she was 18 they done an MRI and praise the Lord it was gone. Nothing there at all to tell that they had even left anything in. Surprised the doctors because they thought someday it might grow back, they didn't think it would totally disappear.

But please hang in there and do the testing and let them see what is causing them. There are so many things they can do now to help with controlling them. Also, talk to your kids and let them know that seizures are like a short circuit in the brain. It is like an electrical cord doesn't make the connection in the wall socket and shoots sparks. That is how they explained it to my daughter when she was small and it helped her to understand.

When she has a seizure and has to go to the ER here all they do is give her valium by IV and that calms her enough so she doesn't keep having them. There is also a drug call adivan (SP) that you can take when you feel a seizure coming on. My daughter is allergic to it but it really helps a friend of hers to stop them or at least they don't last as long. Sorry about the long story but I just want you to know there is hope in your battle with seizures.

Yes they did take me off my meds while I was a the hospital. I also am on Topamax. At the time I was on 3 25mg 2x's daily since then my doasage has changed to 4 25 mg tabs 2x's daily making that total 200mg. I also am on kolonopin. They started me on that after I was released from the hospital. It is for seizures but it is also for anxiety and panic disorder and can be addicting my neurologist said. He thought my seizures were caused my anxiety and stress also, until he saw the results of my MRI, and it showed white mater disease and lesions on the left frontal lobe of my brain.

Im not sure exactly what he thinks is causing them now. They also put me on verapamil. It is a blood bressure medicine and calcium channel blocker. I dont have and have never ha high blood pressure. Its only high when I have a seizure.

That kinda scares me because of all the meds I am on. It just doesnt seem like it can be good for your body

Thank the Lord your daughter is okay. That is wonderful news for you and your daughter. I can't even imagine what that must have been like for her, let alone you as her mother feeling helpless for her, as there was nothing you could do to make her feel any better or give her much of an answer as to when all of it was going to stop. I am so sorry you went through that.

And Yes, I have had a spinal before. Just last September. Its a long story, one I will tell soon, perhaps in my diary, but I lost feeling in my legs for 5 hours.

Please keep us updated on what is going on with you because I care and would like to keep in touch. jan