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Old 04-10-2014, 08:07 PM #6
Raigne Raigne is offline
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Join Date: Feb 2014
Location: Phoenix, AZ
Posts: 41
10 yr Member
Raigne Raigne is offline
Junior Member
 
Join Date: Feb 2014
Location: Phoenix, AZ
Posts: 41
10 yr Member
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Sue, thank you so much for your sweet reply and the great info!

I've actually been thru "the change" (had to have a complete hysterectomy after the birth of my son 11 years ago) and was just diagnosed with the Epilepsy last week, so I'm hoping the medicine will be tweaked as we go along, but that nothing big will have to be changed.

I intend to take you and Darlene's advice about getting referred to an Epilepsy specialist. I'm think that's exactly what I need because of all the other diseases (6!) I have to deal with.

I can't really do sleep studies because I don't really sleep. I've actually had 4 sleep studies but they never work because I don't sleep enough for them to test anything. I did have a CPAP machine for a few years when I was really overweight but I've lost 130 lbs (gastric bypass surgery) and no longer need it. The problem is my brain won't slow down enough to allow me to get to sleep. Though I must say that the Keppra has actually given me my best sleep in 20 years - even after brain surgery in 2004 I didn't sleep much! I had complete med failure last night as I had taken my Kepra, 2 amitriptyline, 2 morphine and 1 extra strength tylenol and didn't sleep. Then I had to take my pain meds because sleep failed to happen and I'd been without pain meds for 6 hours so I had to take 1 hydrocodone 10/325 and my cyclopbenzaprine muscle relaxer. Still no sleep. It happens. I have times where I walk around like a zombie. Hoping the Keppra helps my body learn to sleep more.

The cyst is so tiny, according to the radiologist who read the report and my neuro who went over it with a fine toothed comb (lol) that it's doing nothing to impare anything (her words). It's just there. Scary for me is that it wasn't in my last MRI on my brain a year ago. I can't have contrast on MRI's because I'm deathly allergic to gadolinium contrast (I nearly died once...that was scary...) and because of that near death, after about 100 MRI's my body now goes into "Fight or Flight" panic attack and I have to have open MRI's. So now I never get good detailed MRI's. Which means they saw this "cyst" on a crappy scan. I asked about a million times if there was a danger with this growing or if it caused the Epilepsy problem and a ton of other questions that I'm too tired to remember right now.

I have been tweaking my diet to eat a bit cleaner (staying away from more carbs and there's no nutra sweet in my diet as I get aspartame headaches). I do use Splenda once in a while, but I've nearly cut that out completely too. I just want the medicine to work and for me to get used to it so that I can drive again in three months and not worry about having a seizure. That may seem like a pipe dream, but I live with 7 diseases now so I'm all about hope.
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