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  #11  
Old 08-21-2009, 09:01 AM
hydrohugger hydrohugger is offline
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(((((Denae)))))
Prayers are going Heavenward for you. I hope the meds do their job.
(((((Hugs)))))
Dar
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  #12  
Old 08-21-2009, 09:08 AM
Denae Denae is offline
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Thank you guys, I am definitly not superowman by any means.

I have been an emotional mess. Going from total denial (yes, thsi is just a freaky migraine and I just know to much about seizures and am thinking too much into it, so is the neurologist) to a depressed lump of uselessness.

Going from the topamax to the -must go slowly- lamictal is not going well. I have a whole new understanding of why you wean AED's slowly. As soon as I reduced it these episodes kicked back up. I can't live on klonopin, its the only thing that clears my head.

I am waiting on a call back from my neurologist now, I totally understand wanting to prevent the migraines and stop the seizures with the same medication, but at this point I couldn't care less about my infrequent migraines. I just want these seizures to go away it is making it really hard for me to deal with anything else with on and off "fuzz" in my head all day long.
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  #13  
Old 08-21-2009, 09:30 AM
grace grace is offline
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Denae my friend, hope you can see how much you are loved and cared about here...
i'm so sorry the wean/intro to new med is so difficult on you. hope the doc has a good suggestion for you. hang in there...maybe there is some trigger that will pass soon and ease things too. Have you been able to sleep without being woken by these episodes?
hugs,
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  #14  
Old 08-23-2009, 02:48 AM
Paul from Australia Paul from Australia is offline
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Dear Denae,

If you are on Lamictal I hope the neuro has warned you of Lamictal rash. I hope he has started you on a very small dose. If he hasn't he needs a few lessons!

Continued prayers for a quick resolution.

with love as always

Paul, Alison and Grant with his 18 aunties.

Quote:
Originally Posted by Denae View Post
lamictal is not going well.
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  #15  
Old 08-23-2009, 12:15 PM
Denae Denae is offline
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Paul,
Thanks for the prayers. Today I feel good for the first time in 3 weeks, really good.

Dr.Hill has me using the starter pack and it goes very slowly, just 25mgs a day for the first 2 weeks. Eventually getting up to 100mgs twice a day and we will go from there. It is really frustrating since I was having so many seizures so often. Those "fuzzy/dizzy/blurred vision/headachy" seizures are not major, but are very annoying and happen almost constantly. - I feel guilty even calling them seizures compared to what I haev watched Riley have all week long.- which is another post all together-

The frequency causes me to be tired and heachey most of the day and with Riley you know I need to be in tip top shape!

I had to go back up on the topamax (I had reduced back to just 50mgs at night from 100 a day), my neuro told me that reducing it until the lamictal was therapeutic wasn't an option, obvioulsy. So I am stuck being a complete dope and on 3 AED's. I was so thankful that Dr.Hill called me himself Friday evening, I really was an emotional mess and couldnt take the frequency of those things. He told me to take Klonopin, as a bridge, twice a day, 3 times if needed for the next two to three weeks. he changes have definitly helped.

Yesterday was pretty rough though. For the first time I expereinced something that scared me and now I have some idea what our kids feel like from the inside when they have seizures.

I was laying in bed, I had that fuzzy funny feeling in the left side of my head when all the sudden it was both sides of my head and it felt warm and tingly inside. Then my whole body felt funny, I knew something wasn't right. I tried to call for Sarah, she had just gone into the bathroom to start her shower, but nothing would come out of my mouth- I could hear her messing with the faucets and the stuff in the tub. I *think* I felt my arm move, just slightly, the next thing I remember I got a tingly feeling and remember nothing else until I woke up a little bit later- I have no idea how much time had passed. I know Sarah was still in the shower so it couldn't have been very long. My head hurt pretty badly, and my left arm was achey and felt weak for a good while after. I laid in bed for most of the afternoon and slept off and on. My head hurt most of the afternoon/evening.

I can't believe how much better I feel today. I am almost afraid to jinx it, but I do feel better.

I promised the girls we would do something fun, so we are going to just play some board games until the pool opens and we are going to chill at the splash park.
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  #16  
Old 08-23-2009, 04:37 PM
Tracy Sheppard Tracy Sheppard is offline
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{{{Hugs and prayers going up}}}}
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  #17  
Old 08-24-2009, 12:57 AM
Paul from Australia Paul from Australia is offline
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Dearest Denae,

your last post here almost brought tears to my eyes.

How absolutely terrible for you to go through this.

Hugs, hugs and more hugs to you.

You are in our prayers.

With all our love,

Paul, Alison and Grant with his 18 aunties.
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  #18  
Old 08-24-2009, 10:42 AM
Tamie Tamie is offline
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Sorry to hear you are having seizures, but fascinating to know what actually goes on while seizures are happening from an adult point of view. Sure hope the meds bring the seizures under control at the lowest possible dose.
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  #19  
Old 08-24-2009, 04:33 PM
DystoniaGal DystoniaGal is offline
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Please tell me that you are not driving.
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  #20  
Old 08-24-2009, 06:03 PM
Denae Denae is offline
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I only lost concisouness twice, both times I had plenty of warning that something was wrong. I have been having my daughter drive us around. Now that she is in school Ri's nurse will drive until this is under control, but I was not told I could not drive since the "fuzzy/dizzy stuff does not affect my concious level.

I know enough to be safe and not stupid, I am definitly not going to risk my life, my childrens, or anyone elses.
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