Brain Fog, Seizures, and Insomnia

[Guest guest]

I have caught up on reading messages to our support group and like everyone else am thrilled that Barby received her transplant and is doing well. Also, Cindy, I hope things continue to get better for you as you deal with the trauma of losing your mother while she was under hospice care in your home.I want to update everyone on what is going on with me now that I have been on Xifaxan for my HE (brain fog) for three months and my seizures are under control. Here is the message I posted on October 14 to the group and to Lori:"Yes, I think the Xifaxan is helping me already. My HE systoms were major confusion, forgetfulness, irritability, what my husband said were seizures, mostly which caused me to pass out. He gets so alarmed that he dials 911 and has had me taken to the ER twice. I never remember much or any of the details. This last time, two weeks ago on a Friday, I woke up in my bed on Saturday and asked my husband what the bandage on my arm was from. I did not remember being in the ER the night before and having blood drawn. Every time I go to the ER, they insist on drawing blood. My husband tells them not to do so because I am a hard stick, but they insist on doing it anyway. I think they are doing it partly to make money. I bet this last EEG (sleep-deprived this time) shows nothing just like the previous two EEGs. Our share of the bill each time just for interpretation by a neurologist is $90. My husband never complains, but it all adds up." The Xifaxan is still working great to prevent brain fog. My GI doctor has me on on 2 tablets three times daily. I noticed a dramatic improvement as soon as I started taking it. At this dosage, which is 180 pills per month, it retails for $808 at WalMart Pharmacy. My drug insurance company had a fit and refused to cover it, but my pharmacist and GI doctor worked together and got it approved. I got a refill this past Monday and again the pharmacist had to work with the insurance company to get it approved. I am supposed to take it indefinitely. I had the sleep-deprived EEG and was referred to a neurologist who specializes in epilepsy. He has me on Keppra (a well-known drug specifically for epilepsy) 250 mg twice daily. Since taking Keppra, I have had NO more seizures, although I had two minor incidents in my sleep during which I bit my upper lip, so I am wearing lightweight clear plastic dental retainers (can't remember the name right now, but they are like retainers used to whiten teeth) to sleep. I asked my new dentist if he could fit me with something sturdier but he said, "Yes, but you would not like it!"I was taking Lunesta 3mg for insomnia and it worked great (a lower strength did not help) but when I started having problems with the brain fog and seizures, I stopped taking it. Now, I am back to staying up until 3-4AM. When I told the neurologist I just started seeing for the seizures (epilepsy) that I have insomnia and used to take Lunesta, he made a grimace indicating I should never take Lunesta. I might discuss the insomnia with him at my next visit since I now have the brain fog and seizures under control.Sorry if I am rambling. It's time for me to try to get some sleep. Margie in MOPSC DX 3/99, UC DX 2007

[Guest guest]

I know how you feel about Brain Fog , plus I was a real witch it was like don't cross me..I talked like a drunk my words would slur or I would just forget what I was saying.. I had folks up here thinking I was drunk all the time...My Dr. put me on Xifaxan & it helped a lot ....I have noticed when I get Ascites my brain fog gets worse...I was drained 11/14/07 & 11/21/07 the Ascites is back and I have a appt 12/18/07 to be drained..But I never had a seizure. Jeanne Margaret son wrote: I have caught up on reading messages to our support group and like everyone else am thrilled that Barby received her transplant and is doing well. Also, Cindy, I hope things continue to get better for you as you deal with the trauma of losing your mother while she was under hospice care in your home. I want to update everyone on what is going on with me now that I have been on Xifaxan for my HE (brain fog) for three months and my seizures are under control. Here is the message I posted on October 14 to the group and to Lori: "Yes, I think the Xifaxan is helping me already. My HE systoms were major confusion, forgetfulness, irritability, what my

husband said were seizures, mostly which caused me to pass out. He gets so alarmed that he dials 911 and has had me taken to the ER twice. I never remember much or any of the details. This last time, two weeks ago on a Friday, I woke up in my bed on Saturday and asked my husband what the bandage on my arm was from. I did not remember being in the ER the night before and having blood drawn. Every time I go to the ER, they insist on drawing blood. My husband tells them not to do so because I am a hard stick, but they insist on doing it anyway. I think they are doing it partly to make money. I bet this last EEG (sleep-deprived this time) shows nothing just like the previous two EEGs. Our share of the bill each time just for interpretation by a neurologist is $90. My husband never complains, but it all adds up." The Xifaxan is still working great to prevent brain fog. My GI doctor has me on on 2 tablets three times daily. I noticed a dramatic improvement as soon as I started taking it. At this dosage, which is 180 pills per month, it retails for $808 at WalMart Pharmacy. My drug insurance company had a fit and refused to cover it, but my pharmacist and GI doctor worked together and got it approved. I got a refill this past Monday and again the pharmacist had to work with the insurance company to get it approved. I am supposed to take it

indefinitely. I had the sleep-deprived EEG and was referred to a neurologist who specializes in epilepsy. He has me on Keppra (a well-known drug specifically for epilepsy) 250 mg twice daily. Since taking Keppra, I have had NO more seizures, although I had two minor incidents in my sleep during which I bit my upper lip, so I am wearing lightweight clear plastic dental retainers (can't remember the name right now, but they are like retainers used to whiten teeth) to sleep. I asked my new dentist if he could fit me with something sturdier but he said, "Yes, but you would not like it!" I was taking Lunesta 3mg for insomnia and it worked great (a lower strength did not help) but when I started having problems with the brain fog and seizures, I stopped taking it. Now, I am back to staying up until 3-4AM. When I told the neurologist I

just started seeing for the seizures (epilepsy) that I have insomnia and used to take Lunesta, he made a grimace indicating I should never take Lunesta. I might discuss the insomnia with him at my next visit since I now have the brain fog and seizures under control. Sorry if I am rambling. It's time for me to try to get some sleep. Margie in MO PSC DX 3/99, UC DX 2007