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new episodes I don't understand with HE

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Posted 3/4/2013 4:17 PM (GMT 0)
Hi, I have a question for anyone who is familiar with HE - and I warn you this is a little "blunt".  I have had a rough week and yesterday had two "episodes" and was in ER last week.  I'm on lactulose (40 mg three times a day) and Rifaximin and have been pretty stable for a few months although I wouldn't call my head "clear".  Some of you have helped me in past and I'm hoping for some assurances again. 

Although it's pretty hard to describe what happens, lately it starts with me crying and I don't know why I'm crying.  Then extremely strange visions, thoughts and paranoia, muscle twitching in the extreme and great fear. If someone asks me a question and I try to answer, my leg will kick or my mouth or hands twist but I can't really answer or find the words.  However I am able to tell the doctors where I am and what date it is - but anyone else asking anything just makes me crazy angry although I try not to show it.

The reason I ended up in the ER last week is because I was alone and apparently called my neighbor who didn't know what to do.  When my husband is home he gives me lactulose and within an hour but usually within 20-30 minutes, my head clears and suddenly I am calm again (and I MEAN suddenly - a calm comes over me and I get extremely sleepy.)  My neighbor thought it was more like a seizure (which I've had lately) so she took me in (bless her heart).

I've been pretty good about not verbalizing what is going on (because I truly hate everyone while it's going on and hate that it's so terrifying).  Sometimes my husband takes me in to ER because he's worried I'll put my head through a window (something I told him I was feeling during an episode once). 

My question is this:  does anyone else experience the violent thoughts, then dead calm when the lactulose kicks in?  My ammonia was normal when they tested it.  My liver functions were high for me but not crazy high (in the 200's).

I'm not satisfied that the neurologist I've seen has helped much in terms of seizure and I never know which symptom I'm fighting, not while it's happening.  Last night it just felt like my head was exploding.  But after the lactulose it calmed down.

Thanks to anyone who's been through this who may help calm my fears.  As long as I'm "stable" my family and doctors are satisfied.   Meanwhile I'm still reeling. 

Feeling a little desperate.

Posted 3/4/2013 5:27 PM (GMT 0)
Start taking more lactulose. You can't overdose on it. Just be sure to stay hydrated.
Posted 3/4/2013 5:41 PM (GMT 0)
"does anyone else experience the violent thoughts, then dead calm when the lactulose kicks in?"

Seems like the lactulose calms you but if your ammonia level was normal, that gives me pause. Brother got HE all the time, but never got violent thoughts, to my knowledge, just grouchy maybe. But everyone is different. And during the episodes he ALWAYS had high ammonia levels, so your case is a bit different.
There may be something else going on but you would need a specialist for that I guess.

Are you on any meds like seroquel or xanax or something? Seroquel coupled with tramadol, made my brother nuts post transplant, so he is now weaned of it and feels a lot more normal.

In the meantime, like David said, you can't overdoes on lactulose so I definitely would start by increasing that, along with plenty of fluids.
Posted 3/4/2013 9:53 PM (GMT 0)
 I could be a bit aggressive but not violent , I got really ticked off at the wife for moving things around a lot ( She's a clean freak ) but at least 50% of the time it was me hiding things from myself , I came to find out ( of course I will never admit it ) tongue  . I would slam doors and walk outside and wonder around the yard until I got myself together . A lot of this was during the first year after diagnosis and I was feeling a lot of stress along with HE and a heavy volume of antidepressants , I'm sure all those thing wrapped up in a tight ball had a lot to do with my behavior .

Spending larger amounts of time at home by myself and not paying attention to proper dosages of medications got me into a few bad situations almost like what your describing . PILL CONTAINERS are a must for those of us with HE problems , The ones with days clearly labeled on them so you can pre-dispense each dosage correctly . EAT something , Anything , before you gobble that pill down or you will quickly regret it .

A. Ziffle 

Posted 3/4/2013 9:56 PM (GMT 0)
Mae - they've told me testing ammonia isn't always a good indicator of HE. I just wonder if these symptoms sound right or if they're missing something neurologically. But then why would the lactulose work so well? I'm pretty scared.
Posted 3/4/2013 10:03 PM (GMT 0)
Not happy with your neurologist? Fire him and get another.

Hugs,
Connie
Posted 3/4/2013 10:05 PM (GMT 0)
A. Ziffle & David ... thanks! I care less about diarrrhea even though it does get horrific -it's good to be reminded to just take more lactulose. Why is that small thing so hard to remember? I keep trying to get my thoughts under control but so far lactulose is the only thing that helps.
Posted 3/4/2013 10:13 PM (GMT 0)
Connie we have to have a referral for specialists and he's the only one within 2 hours. I don't want to waste their time if the lactulose os working but there is a part of me that questions the treatment - maybe I should sit down with my husband and prepare a list of questions for my GP and go from there.
Posted 3/4/2013 11:11 PM (GMT 0)
Well the failure to find words is common with HE, and yes I know that the levels are not always a good barometer, but it does show trends. It can make you have loss of coordination and shakey or flappy hands, by the way.

For instance, at one time my brother was way out there at 123, yet months later, he would get up as high as 5 or 600 before he was "out there". I think that you develop a tolerance for high ammonia at some point.

The trouble is, when its really high and you're out of it, you cannot take lactulose orally. Usually you're too confused by then and often combative. Also, at that point they give it to you via an NG or naso-gastric tube and sometimes rectally, no fun either way.

One weekend during a hospitalization for HE, (667) the hospitalist had to order lactulose every hour, then every two, etc. until he came around. But the problem was, this doctor unknowingly restricted his fluids which caused damage to his kidneys. He didn't urinate much after that. They admitted his mistake but I just caution you on the importance of the lactulose. Keep in mind that, like David said, you cannot overdose on it.

Do you know your MELD score? Good idea to make that list, pity you can't see a gastro doc or hepatologist in your area. The way I see it, a two-hour drive is worth the piece of mind though.

Mae

Post Edited (Mae be here) : 3/4/2013 4:14:45 PM (GMT-7)

Posted 3/4/2013 11:37 PM (GMT 0)
I'm not explaining myself too well ... I am being evaluated by the transplant clinic and see them regularly. It's the neurologist Connie was talking about. Anyway I feel some anger or frustration directed my way so perhaps Connie could close this thread. Sorry I can't be more clear.
Posted 3/4/2013 11:58 PM (GMT 0)
If I wasn't scared enough before I sure am now. Is that how these forums are supposed to work?
Posted 3/4/2013 11:58 PM (GMT 0)
Deb, you are clear to me. It's a good idea to write down questions for your GP. I assure you that nobody here is angry with you or frustrated. Sometimes people don't "get" the situation. It happens, especially if one is in a rush. I've been guilty of misunderstanding myself. So I won't close this thread unless you really feel strongly about it.

Hugs,
Connie
Posted 3/5/2013 12:05 AM (GMT 0)
Deb your freakin out over nothing . Nothing I've read by you or anyone else should give you the impression anybody is frustrated with you . Just calm down for a bit and reread what has been written you'll see it . It's easy when your all jacked up like this to misunderstand something .

Connie used to get me so ticked of at times when I was feeling out of it back when I first came here . A lot of it was simply the HE making my mind think she was just being mean . She's a bit anal yes , but mean , Not hardly . It's part of the sickness and you can't help it , Kinda makes you feel on the defensive you know . I hate the expression but " Take a deep breathe " and understand we are the same bunch that's helped you along before . Take care of yourself my little canook friend . smilewinkgrin  

A. Ziffle   

Posted 3/5/2013 12:52 AM (GMT 0)
OK I'll take a few breaths and talk to you when I'm clearer.
Posted 3/5/2013 1:25 AM (GMT 0)
Perhaps checking out your ammonia level isn't the end all, be all to detect HE, but it's better than doing nothing. You're doing fine here, calm down, getting upset will only make things worse. Remember, a good attitude goes a long way, when dealing with this disease, or anything in life.
Posted 3/5/2013 2:17 AM (GMT 0)
Certain mixes of meds would make my hubby angry for no reason. Once we tried different meds together that helped. Oxycodone made him really angry..and he saw things that weren't there. It was really hard on him. Once we switched to a different painkiller..that helped. The lactalose helped him, too. I too, like Ziffle, think it is just the disease. The toxins build up. Thinking of you and hope you are feeling better.
Angie1953
Posted 3/5/2013 2:38 AM (GMT 0)
HE side affects and severity is different in every person. For some patients, Ammonia in the low 100's, and they are fine. When my husband got to 90 . .he would get arguementative. over 150 and he would go into his "coma like state". Mean while, I believe it was 911 Medics husband was @ 200 all the time, and very little side affects. This illness, there is no rhyme or reason, all anyone can do is educate themselves, and get a good doctor and caregiver (tho some strong people like Connie make it through with barely any caregiver assistance!!), and take the meds, pay attention to their body, and pray!!

Good Luck

Debbie
Posted 3/5/2013 5:31 AM (GMT 0)
I haven't talked about Mike's HE for a long time on here.

He was suffering for HE for a long time. It started about a year and a half before we realized about End Stage Liver Disease. We were visiting my college roommate who was visiting in Jacksonville FL. We drove a long way, then stayed at a hotel nearby to do several activities. Mike wanted to stop at the hardware store next to the hotel to get "some stuff."

Well, there was no hardware store, but he had begun the buying stuff problem. Stupid stuff. 3 coffeemakers in case one broke. 3 pairs of golf shoes (in case they stopped manufacturing them in his size?) An extra dust buster. A second blender. Huh? And I return to the invisible hardware store. There was such a store at a hotel near I-95 in another city. He just forgot which trip we were on. He had an episode of syncope on the drive home and he pulled off and had me drive. I took him to ER when we got closer to home and he spent 2 days in the hospital thinking he was having a cardiac episode. They told us his ammonia was off the charts and kept him on IV stuff until he was "normal" again. But no one did any liver tests.

Much later, we had the HE diagnosis and the meds, but he turned mean then....really mean. And aggressive. I have never been able to talk to him about that time as he is not an introspective man and I have discovered he has amnesia about much of what happened the year before transplant. I wonder if you will forget your episodes as well. He did a bunch of crazy stuff and can't recall.

He can't remember whole weeks he was in the hospital or who came to visit...to come to say goodbye, actually. But he made it and has not been that way, but for some days he has felt really poorly.

Good luck. Keep up the good work trying to work through your episodes. It is good you are a reflective person. Be sure to tell everyone you love them when you are in a good place. It helps for the times when you are not.

Hugs,

Carol

Post Edited By Moderator (hep93) : 3/4/2013 11:04:41 PM (GMT-7)

Posted 3/5/2013 9:55 AM (GMT 0)
I will Carol and thank you. It's been a rough week and very confusing. I often don't remember the details. Some rest will help I'm sure. Thanks everyone.
Posted 5/31/2013 5:11 PM (GMT 0)
How do I know if this thread is still open?

Yes, yet another with the "fog" and "pissed off" life lately. Heck, can't even form a sentence or spell....thank god for spell corrector

Should I start a new thread with same subject...before I get into "my" stuff, I will wait for an answer, but unless I get a message, don't know how I'll find my way back here for answer...living in a world of confusion ....
ReneeTina confused
Never mind ab last thingy just saw where I can be emailed if answered
Posted 5/31/2013 7:32 PM (GMT 0)
RT, I think you should start a new thread.

Thanks!

Hugs,
Connie
Posted 5/31/2013 7:49 PM (GMT 0)
Thanks :-)
ReneeTina
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