Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 I have the exact same symptoms, I am in end-stage. Lactulose helps greatly with this. Eat smaller portions of food, but eat 6 or 8 times a day. That will help. Joe -------------- Original message from "chris" : -------------- Sometimes when I eat, and it doesn't matter what I eat, I get very sleepy. I also have a hard time keeping my eyes open, I almost feel a little drunk and unable to think straight. At the same time my abdomen feels bloated. I was wondering if anyone else with PSC has had this happen to them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 I have the exact same symptoms, I am in end-stage. Lactulose helps greatly with this. Eat smaller portions of food, but eat 6 or 8 times a day. That will help. Joe -------------- Original message from "chris" : -------------- Sometimes when I eat, and it doesn't matter what I eat, I get very sleepy. I also have a hard time keeping my eyes open, I almost feel a little drunk and unable to think straight. At the same time my abdomen feels bloated. I was wondering if anyone else with PSC has had this happen to them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 I have the exact same symptoms, I am in end-stage. Lactulose helps greatly with this. Eat smaller portions of food, but eat 6 or 8 times a day. That will help. Joe -------------- Original message from "chris" : -------------- Sometimes when I eat, and it doesn't matter what I eat, I get very sleepy. I also have a hard time keeping my eyes open, I almost feel a little drunk and unable to think straight. At the same time my abdomen feels bloated. I was wondering if anyone else with PSC has had this happen to them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 I know how you feel I have the same symptom..I am stage 4 last Monday & Tuesday was real bad..I call it brain fog..I cant think straight or remember anything and my speech is slurred my kids can tell when I am talking to them....I had to drive into town and I got confused where i was.. I shouldn't have been driving....This is why I am moving to Texas so my daughters can help me...My belly is so big it is gross I am going in this week to get drained again..before I move to TX the 28th of May...it is toxins flowing around your body..and you could go into a coma and die. Jeanne psc u/c 2003 stage 4chris wrote: Sometimes when I eat, and it doesn't matter what I eat, I get very sleepy. I also have a hard time keeping my eyes open, I almost feel a little drunk and unable to think straight. At the same time my abdomen feels bloated. I was wondering if anyone else with PSC has had this happen to them. Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 I know how you feel I have the same symptom..I am stage 4 last Monday & Tuesday was real bad..I call it brain fog..I cant think straight or remember anything and my speech is slurred my kids can tell when I am talking to them....I had to drive into town and I got confused where i was.. I shouldn't have been driving....This is why I am moving to Texas so my daughters can help me...My belly is so big it is gross I am going in this week to get drained again..before I move to TX the 28th of May...it is toxins flowing around your body..and you could go into a coma and die. Jeanne psc u/c 2003 stage 4chris wrote: Sometimes when I eat, and it doesn't matter what I eat, I get very sleepy. I also have a hard time keeping my eyes open, I almost feel a little drunk and unable to think straight. At the same time my abdomen feels bloated. I was wondering if anyone else with PSC has had this happen to them. Jeanne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 > > Sometimes when I eat, and it doesn't matter what I eat, I get very > sleepy. I also have a hard time keeping my eyes open, I almost feel a > little drunk and unable to think straight. At the same time my abdomen > feels bloated. I was wondering if anyone else with PSC has had this > happen to them. > This may be a blood sugar issue or it may be hepatic encephalopathy (HE) which many of us deal with. Go to the group website, click on " Links " and then click on the 6th item listed " Encephalopathy - Portosytemic Encephalopathy Chart. " This is a superb resource!!! PRINT A COPY FOR YOURSELF!!!! Next, ask your dr. to order a serum ammonia level. If it's elevated, you probably have some hepatic encephalopathy going on. (How high the figure is doesn't matter, since there's not a direct correlation between how high the ammonia is and the degree of HE. Lactulose definitely helps. However, after fooling with that for some weeks, my dr. switched me to Xifaxan which has been nothing short of a miracle for me. It's expensive and you will probably have to fight your insurance company for it, but your dr. can write a letter stating that it's absolutely necessary. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 > > Sometimes when I eat, and it doesn't matter what I eat, I get very > sleepy. I also have a hard time keeping my eyes open, I almost feel a > little drunk and unable to think straight. At the same time my abdomen > feels bloated. I was wondering if anyone else with PSC has had this > happen to them. > This may be a blood sugar issue or it may be hepatic encephalopathy (HE) which many of us deal with. Go to the group website, click on " Links " and then click on the 6th item listed " Encephalopathy - Portosytemic Encephalopathy Chart. " This is a superb resource!!! PRINT A COPY FOR YOURSELF!!!! Next, ask your dr. to order a serum ammonia level. If it's elevated, you probably have some hepatic encephalopathy going on. (How high the figure is doesn't matter, since there's not a direct correlation between how high the ammonia is and the degree of HE. Lactulose definitely helps. However, after fooling with that for some weeks, my dr. switched me to Xifaxan which has been nothing short of a miracle for me. It's expensive and you will probably have to fight your insurance company for it, but your dr. can write a letter stating that it's absolutely necessary. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 > > Sometimes when I eat, and it doesn't matter what I eat, I get very > sleepy. I also have a hard time keeping my eyes open, I almost feel a > little drunk and unable to think straight. At the same time my abdomen > feels bloated. I was wondering if anyone else with PSC has had this > happen to them. > This may be a blood sugar issue or it may be hepatic encephalopathy (HE) which many of us deal with. Go to the group website, click on " Links " and then click on the 6th item listed " Encephalopathy - Portosytemic Encephalopathy Chart. " This is a superb resource!!! PRINT A COPY FOR YOURSELF!!!! Next, ask your dr. to order a serum ammonia level. If it's elevated, you probably have some hepatic encephalopathy going on. (How high the figure is doesn't matter, since there's not a direct correlation between how high the ammonia is and the degree of HE. Lactulose definitely helps. However, after fooling with that for some weeks, my dr. switched me to Xifaxan which has been nothing short of a miracle for me. It's expensive and you will probably have to fight your insurance company for it, but your dr. can write a letter stating that it's absolutely necessary. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 > > I know how you feel I have the same symptom..I am stage 4 > last Monday & Tuesday was real bad..I call it brain fog..I cant think > straight or remember anything and my speech is slurred my kids can tell when I am talking to them....I had to drive into town and > I got confused where i was.. I shouldn't have been driving.... ================== Jeanne -- Why in heaven's name doesn't your dr. have you on something like Xifaxan????? Before starting that, I had reached the point of being a blithering idiot. Didn't know what I was saying half the time, couldn't figure out how to write a check, definitely couldn't drive!!! The Xifaxan has given me back a quality of life I didn't dare dream of, and also kicked my Crohn's into deep deep remission. Demand that your dr. give you something .... preferably Xifaxan (which won't keep you tied to the bathroom as lactulose does.) Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2008 Report Share Posted May 17, 2008 > > I know how you feel I have the same symptom..I am stage 4 > last Monday & Tuesday was real bad..I call it brain fog..I cant think > straight or remember anything and my speech is slurred my kids can tell when I am talking to them....I had to drive into town and > I got confused where i was.. I shouldn't have been driving.... ================== Jeanne -- Why in heaven's name doesn't your dr. have you on something like Xifaxan????? Before starting that, I had reached the point of being a blithering idiot. Didn't know what I was saying half the time, couldn't figure out how to write a check, definitely couldn't drive!!! The Xifaxan has given me back a quality of life I didn't dare dream of, and also kicked my Crohn's into deep deep remission. Demand that your dr. give you something .... preferably Xifaxan (which won't keep you tied to the bathroom as lactulose does.) Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.