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Posted 4/24/2014 4:33 PM (GMT 0)
It's been a week of focal seizures, heavy paranoia, bad joint pain and lactulose, lactulose lactulose. And I'm not even one of the sick ones! How do people do this? Just call me Jekyl and Hyde. I hope my brain can survive in time to get treatment. The paranoia is taking over and they've got me "titrating" like crazy but I feel like I'm losing the battle. I wish I wasn't so aware ... maybe it would be easier. Sorry to be such a baby ... somebody please kick me in the butt so I dig deeper.
Posted 4/24/2014 5:11 PM (GMT 0)
Any new chance to get some Xifaxan? Like some special case situation? I feel so bad for you.

And YOU CAN DO THIS.

Extra hugs,

Mama Lama
Posted 4/24/2014 5:48 PM (GMT 0)
Metronidazole and Nyomicin are alternatives to Xifaxan but I believe the Nyomicine is no longer available in the US. Deb, I know it can be tough dealing with HE and I still have good and bad days myself. Have you tried occupying your idle time with activities? For me being idle starts depression and consequentially opens the door to other problems. Evaluate what your doing when these feelings seem to come on and make adjustments in your lifestyle if need be. Hang in there, You know we are here for you.


Ziff
Posted 4/24/2014 7:40 PM (GMT 0)
I started Flagyl a couple days ago so I do have high hopes. ML ... thanks ... it never feels like I can ... but you're right . I CAN. Ziffle I know being active helps and I am when I can be ... I'm maybe just too unstable right now. Very clumsy ... no focus. The clinic is working with me and that is a big relief. This morning it hit me like lightning just as I was getting ready. The seizures leave me limp for about 5 hours ... I won't even begin to say how long it takes to lassoo my mind back into reality. My friend called just now and said I sounded far far away. That's one way of putting it.
Posted 4/24/2014 7:47 PM (GMT 0)
Man, so sorry to hear all this HepC. Don't be so hard on yourself. One step at a time. Deep breaths... take it easy on yourself.... I know that's hard ... you are simply amazing!! You are a fighter and you'll get through this girl!! You are in my thoughts and prayers!!

Sandia
Posted 4/24/2014 8:39 PM (GMT 0)
Hi Deb...How much Lactulose are you taking now? The Hepa at Mayo had me give themister one dose per hour, until he became clear headed. Then he said to back off to one dose 4 times per day. (30 ml) Do you chart times? You are an expert at this, but I know them mind can be so confused when swimming in ammonia. Don't you dare give up! I hope the Flagyl kicks in and helps with some of the worst of HE. Big Hugs girlfriend.
Posted 4/24/2014 11:37 PM (GMT 0)
Sandia thanks! themiz I'm taking an extra dose in the a.m. so 90 ml. The clinic calls two times a day to monitor ... she's trying to keep me out of the ER because I went in Easter Sunday and the anti psychotic drug they wanted to tr eat the seizures with would have made the lactulose ineffective. Once I'm established with a family physician that shouldn't happen again. It was bad enough they pumped me full of lorazepam which makes HE worse. Still not their fault . That's standard care ... I haven't had seizures for a couple of years ... maybe a divorce and two moves (one with a broken wrist) in a year was too much stress. But it was unavoidable and I know I'm where I need to be now. I just have to work hard at getting stable again. At least I made good money on both real estate sales.;). Thanks all.
Posted 4/25/2014 5:49 AM (GMT 0)
Hi, praying for you, and I too have h e. Haven't had any hospitalizations...45 ml lactulose every 2 hrs till three plus successful trips to the bathroom...also take zinc succ 3 times a day and xifaxan twice a day....you can do this...great support in this group. Know it isn't easy...hang in there!!
👱music
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