High Ammonia Levels

[tigermama]

I've had HepC for many years now. I just recently found out about my high levels. The doctor wanted me to take lactulose, but to be honest I can't stand the taste of it. I've had to take so many meds in my lifetime that it's very hard for me to take any medicines. Is there anyone out there that can give me some advice?

[q1605]

I had a seizure with high levels of ammonia. They didn't say that was the real trigger but they wouldn't rule it out either. My next stop was to a neurologist that put me on anti seizure med's that I will be taking forever.  

[AugustineMama]

I cut that sickly sweet taste down by mixing it with cranberry juice. It still tastes horrible, but better than screaming and freaking my husband out and accusing him of slapping me and scaring the daylights out of him. I have no memory of any of it.

[flyinlynn]

Great thoughts and insight Kadi

But just want you to know the people who you are commenting to haven't posted since 2010  or five years ago and likely won't see your comments.

If you would like to have your insights or any questions answered I suggest you could go to the top right of the page and select the green post a question link and start a new thread so more people will see it. Also if you like there is also a cirrhosis group you could check out since your comments are about HE and Lactulose that could be a good group for you to check out.

I saw you were mentioning the taste of Lactulose and I have seen some say you could add to water to make the taste more palatable

Or there is another version of Lactulose called Kristalose which is a powder you add that many can tolerate the taste better it is more expensive and some insurance may not cover it

Best to you
Lynn

[KadiBlue]

I realize I am very late to this conversation, but I have to agree with everyone else that has written and told you to take the lactulose. Like OrphanedHawk, I have been in and out of the hospital with high ammonia levels, this has been extremely difficult for my husband, because in my confused and disoriented state I had refused to go to the hospital and sometimes it would take him up to 15 hours just to get me to the hospital.

This isn't just about you, yes it is you going through this but try to remember that your family members or the people that is taking care of you are also going through all of this with you.

I know how selfish I can be because for a long time I felt like it was just about me, until one day I sat down and really thought about it while I still had a clear thought my head,I thought, about what I was putting my family through, through no fault of my own. I have liver disease, in order to maintain a lifestyle of quality I have to take the lactulose every day, without fail,no matter what it tastes like. The alternative is death.

I don't know about you, but going in and out, in and out, in and out of the hospital is not my idea of quality-of-life. I have very little memory of even going to the hospital, most the time when I come out of it I've already been admitted and I'm already upstairs in a room.  In the meantime, my husband has to go through it all with very little help from my family, he has to be the one that suffers through the memory of me being in the emergency room of me being admitted into the hospital while I'm screaming and don't even know what I'm talking about, my name or what day it is, even though I insist I do at the time.

I do know what I'm talking about. I take anywhere between 8 to 16 shots of Lactulose a day, to control my ammonia levels to keep them at a level that will keep me out of the hospital. I can't stand the taste or the texture, there are times that I will start crying just at the thought of taking it, but I know I need it to live. As someone mentioned earlier, I would eat dirt to live.

God bless you, Tigermama, there are people out here who are suffering just as much as you are, if not more. I wish you all the luck in the world I wish they could find a cure for this, but until they do this is what we have to work with.

Take the lactulose, it will lengthen your life.

Kadi'

[merryBe]

If the lactulose is an issue for you there is an alternative.

If you stay well hydrated, and on a decent diet, and add fiber tablets to your regime you may be able to reduce your ammonia without the lactulose.

This is the method I used because my ammonia was not terribly high, and because I know the sucralose adds a chlorine molecule in its breakdown process, which is not good.

Since my ammonia was around 120 I decided to go the natural route only...smaller protein portions, and more fiber, and it worked for me...down to 22 now.

However, if levels were very high then I think the lactulose would be the only alternative...it prevents the absorption in the first place. Yes it has issues, gas, etc etc, but sometimes we have to make adjustments.

for me, it was just easier to curb comsumption since I'm not a big meat eater anyway, but I understand for some folks this is a hard sell. None the less, the goal of regular soft movements is what allows for less ammonia build up, and that goal must be reached. I eat 3 servings of fruit and or veggies a day, and take half a costco fiber tablet, twice a day. This works with no gastro disturbances, unlike the lactulose which had major issues that way.

[ClippedWings]

I take mine mixed with 8 ozs. of Orange Juice.  Covers the nasty flavor well.  Having had a bout of Hepatic Encephalopathy I can tell you the Lactulose is the better alternative.  Good luck.

[Dee1956]

Hi I am a little late to help however I thought better late than never.
I take the lactulose as a preventative.  I have researched what can happen if your ammonia gets to a level that affects your brain.  I did not know the other things and will research further.  Out of all the stuff I have taken in an attempt to kill this virus, two tablespoons a day is not much.  I would eat dirt if it would make me well.
I wish you luck
Dee

[SonniQ]

Take the Lactulose - that is the least of things that you might not want to do.  I take it straight.  But mix it in a glass of juice if you want.   It doesn't matter how it gets into you!

Sonni

[orleans]

I used it as a prebiotic. The first script was unflavored and a teaspoon hid very well in a cup of coffee, the next was flavored with some citrus something YUK!

[merryBe]

the brain damage caused by high ammonia levels not to mention accelerated liver damage are not what you want either right?

I think the better part of valor is to tolerate the taste so that you can keep your wits about you...unless dymentia, brain fog and liver failure sound good to you.
mb

[orphanedhawk]

Yes, take the lactulose! I'm sorry but I stopped taking it and landed up in the ER, completely delirious. I could have died. I only have small snippets of memory from that episode.
You also should have a low protein diet, no red meat, just chicken, fish and tofu.

I didn't like the taste of lactulose either but you can drink lots of water or juice immediately after.
A good doctor told me how to regulate it.  
You want 2-3 soft stools daily. If you have more, use less.

Good luck
OH