Encephalopathy, or could it me Dimentia???

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 1/12/2010 9:48 PM (GMT -7)   
Hello, All! I have not posted in quite some time and hope this post finds you all well. As you know, this liver disease stuff can really throw curve balls when you least expect it!! My husband has really had a tough time of it in that with his liver disease, he is having so many other problems as a result of the HepC, we have a loooong list of medical issues. Last April, he started for whatever reason having seizures and the docs have him on a couple of different seizure medications (Keppra and Dilantin). Well, as it turns out, his liver is not processing the Dilantin very well and he keeps seizing. So, docs are stepping him down off of the Dilantin and putting him on Topamax and gradually increasing the dosage every week over the next few weeks. My dilemma is this.....over the last several days, I have noticed decreased cognitive functions in my husband. He at times acts like he does when his ammonia level is on the rise, so I did increase the Lactulose, etc....but, he is still just not with the program. He has major memory issues.....examples are that I fed him dinner last night and two hours later asked me what was for dinner, he is calling our son by our other son's name, he has no idea what day it is, really, does not remember taking his meds, etc. This weekend, very impaired judgment in that he went to empty the fireplace while it still had hot burning embers in it, and smoked the house up, etc......not to mention the fact that he has been very beligerent (sp?) and somewhat agressive and irritable. This week, he is one of my children! I have placed a call to his PCP, neurologist, etc and trying to get the quickest appt possible. But, in the meantime, wondering if with all that's going on and all the meds can this cause some Dimentia, or possibly brain damage from the toxins building up in his body?? As you all know, liver disease is so very frustrating because with every turn some new hurdle seems to pop up. Guess I just needed to get on here and vent, which I have not done in a while!! I also wanted to be armed w/ information to throw at the docs, because as you know, the docs sometimes play guessing games with all this. He is on inactive status w/ transplant team due to the seizures and also a mess with our insurance which we are getting straightened out (he is on medicaid).
 
Thanks for letting me vent.......
 
Mer

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/12/2010 10:29 PM (GMT -7)   
Hi Mer,

Have they done an EEG lately. My husband had a small stroke a few months after he started having seizures. Also is he on Xifaxan? Maybe he has an infection. The lactulose doesn't work so good by itself when an infection is going on.

Hang in there.......are you taking some time for yourself? I know it's hard to find the time given your circumstances but it really is a must do.......for your own sanity.

Thoughts and prayers............
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 1/12/2010 10:37 PM (GMT -7)   
Thanks, PG!

He is on the Xifaxan. Last EEG was about 3 months ago. Then, our insurance changed and now I am having a heck of a time getting a neuro that is accepting his insurance and new patients!! But, I am convinced there is something that is being missed here. They have done EEG, MRI, MRA, MRV of the brain as well as CT scans and nothing is showing....however, he keep seizing, and has had a headache for about a year now. We have had some issues on his bloodwork where things have been a little off, like potassium, etc but not so low that it was extremely alarming. ALT and AST are only slightly elevated which, all things considered, is a good thing as far as his liver goes.

I am trying to make time to have lunch out with the girls at least once a week,which is my little escape, but between doc appts and taking care of my 5 year old, my plate gets kind of full......

Will see if I can get the docs to double check and see if there is infection....that would make the most sense.......

Pink Grandma
Veteran Member


Date Joined Nov 2006
Total Posts : 2445
   Posted 1/12/2010 11:00 PM (GMT -7)   
That's one thing I don't miss........fighting with the insurance company. It was a royal pain.

You live with him.......so you know him better than the doctors......Tell them to test him for MSRA if they haven't already.

Did they up the dosage on the Keppra? They had to up my husband's at least twice before the seizures were finally stopped. They were persistent little buggers.....they kept coming back.

Have a good night.....thoughts and prayers......
Pink Grandma
Forum moderator-Hepatitis

When the going gets tough....the tough get going! Don't always know where I going but I get there anyways.


allie2631
Regular Member


Date Joined Mar 2008
Total Posts : 313
   Posted 1/13/2010 2:21 AM (GMT -7)   
Liver disease is so unpredictable and has so many different effects on the bodies sytems that it can be very hard to get to the route of some problems.
My mum started taking seizuires approx 11/2 years ago. I have epilepsy myself but these seizuires were different. In all she has only taken about 6 since then. But they last for ages, a few have lasted up to an hour, which is a medical emergency. Not drinking for a day (withdrawals) was blamed, also scans showed she had suffered bleeds in the brain strokes. We stilldonotknow if she has the stroke first then the seizuire, or the opposite way around. Unfortunately she never attends any outpatient clinics specifically for epilepsy, so further tests have never been done. She is on Tegretol daily.
She also goes through periods when her memory is really bad, especially short term. it can be very hard to carry on conversations with her as she finds it hard to remember when you last spoke to her. Is this times when her amonia level is high, I do not know no one has ever explained any of this to me. But she has periods when she is totally confused and frightened and other times she is as sharp as a tack and cocky with it. She currently has mrsa after a hip replacement. So it might be a good idea to get that checked out. There have been periods that i have thought mentally that my mum is incapable of looking after herself as her confusion has been so bad (alcoholic dementia so they said) So even though it might seems bad right now, it might seem that nothing is going to change, it can and it might. So hang in there. Sometimes i find that talking to too many doctors or nurses frustrates me as a lot of them are not experienced enough in this field and just make wild guesses which have you all over the place.
Also do not worry about venting, I do it all the time, it helps a little. I hope you find some answers that can help you

shadowsghost
Regular Member


Date Joined Apr 2008
Total Posts : 489
   Posted 1/13/2010 10:39 AM (GMT -7)   
Mer, Do some intense research on hubbies meds. Doug was having some of the same issues and they ran all kinds of tests neuro etc. Well me being me did research and found burried at bottom of list of side effects some of his symptoms. So after me flipping out on the interns they weaned him off meds and tried something different..... symptoms went away. So keep calling all his Dr's you are doing it right. Hang in there.
Sue
When I started counting my blessings my whole world turned around.


hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/13/2010 12:53 PM (GMT -7)   

Mer, it's good to see you here again!

My mind immediately went to side effects of the Topamax.  When I consulted my Mosby's Medical Drug Reference, it states in side effects: cognitive dysfunction and defective coordination (81% in one study!)  Sometimes meds produce worse problems than the one they're meant to treat.  They also mention drinking plenty of water to prevent kidney stones.

However, with what the others have said, it could well be an infection or stroke.  Keep pushing the doctors to find out what is going on!

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland


mer
Veteran Member


Date Joined Aug 2008
Total Posts : 613
   Posted 1/13/2010 7:21 PM (GMT -7)   
Thanks to all of you! I agree, Connie.....I am wondering if it's the Topamax, too because we are gradually increasing the dosage week by week and it was after this last increase that I noticed a marked difference in his cognitive functions. I have today spoken with neuro and they are going to do a follow up EEG, and consult and I also have a call in to his PCP to get in asap to re-do bloodwork to make sure no infections, etc.....

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 1/13/2010 7:37 PM (GMT -7)   

Mer, that does sound very suspicious for the Topamax.  I think they should back it down again and see what happens.

Hugs,

Connie


hep93
Forum moderator - Hepatitis
 
"But that was yesterday, and I was a different person then."
Lewis Carroll, Alice in Wonderland

New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, December 05, 2016 11:55 AM (GMT -7)
There are a total of 2,733,060 posts in 301,078 threads.
View Active Threads


Who's Online
This forum has 151233 registered members. Please welcome our newest member, Blazenky.
360 Guest(s), 11 Registered Member(s) are currently online.  Details
Blazenky, ArtAngel, Tick41, Huddie, Tudpock18, iho, omar brarou, JackH, hatter15, iPoop, Peter A


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer