Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 So far it seems nobody else in this group has recently mentioned (for the newcomers) RX medicines used to treat brain fog. I was diagnosed with PSC in 3/99 after routine blood tests showed highly elevated levels of liver enzymes. I had no symptoms of any kind. Now my primary problems are itching which is under control by taking RX Allegra, sleep cycle disorder which I have not been able to solve, and brain fog. I don't experience excessive fatigue as long as I get 8 hours of sleep. If I go to bed when I am tired I sleep soundly. However regardless of what I have tried I cannot get to sleep at a " normal " time, so I stay up until 4-4:30AM. I tried RX medicines like Lunesta but they had undesirable side effects. If I get much less than 8 hours of sleep, I need a nap of 30-60 minutes in the afternoon or early evening. When I first started having brain fog, I mentioned it to my GI and told him I thought I had early onset Alzheimer's. He said, " It's your liver! " Since then he has had me on Xifaxan 2 tablets 3 times daily and it has helped tremendously. Xifaxan is an antibiotic which has been found to reduce the level of ammonia which causes hepatic encephalopathy (brain fog). My primary care physician said I could also take Lactulose but since Xifaxan works for me and I don't have ulcerative colitis I have not bothered to try it. I can imagine how difficult it is especially for students having to study, write papers, and take tests to deal with brain fog and strongly suggest looking into taking Xifaxan. Margie in MO PSC DX 3/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Thank you! We'll check with my daughter's doctor at our next visit - not being able to finish those papers at the end of last semester really was the pits. The day before one of them was due I ended up going to school, picking her up, and hauling her to a motel in a nearby town - hoping that getting her away from campus and all the distractions would help.Watching her that night, as she struggled all all night to write, it was clear to me that she really couldn't write -- although at that point we had no clue why. The block lasted through the extended deadline for the paper (which basically got written by me sitting beside her and prodding her until she got to another small window of clarity and could write a paragraph or two, then back to the fog). The fog lifted about a day before the extended deadline for the second paper - shortly after she had called me in tears to come home from work and sit with her while she worked on the second one. By 45 minutes later when I got home, the words had finally started to flow and she wrote non-stop for 10 hours to finish it.It was such a relief when we got some test results that pointed to liver - and discovered that one of the symptoms was "brain fog." She had been so afraid she was going crazy....although looking again at your note, it may not help for my daughter - she has an intolerance for most oral antibiotics (she has a list a half mile long that she can't take - and virtually every new oral antibiotic she tries gets added to the list, even when she can take the IV version of the same antibiotic without a problem). We'll see.As to the sleep cycle - I thought my daughter just took after me (we're both night owls). (Although recently she has been having trouble sleeping even when allowed to sleep on the schedule her body clock sets.)Now my primary problems are itching which is under control by taking RX Allegra, sleep cycle disorder which I have not been able to solve, and brain fog. I don't experience excessive fatigue as long as I get 8 hours of sleep.Since then he has had me on Xifaxan 2 tablets 3 times daily and it has helped tremendously. Xifaxan is an antibiotic which has been found to reduce the level of ammonia which causes hepatic encephalopathy (brain fog). My primary care physician said I could also take Lactulose but since Xifaxan works for me and I don't have ulcerative colitis I have not bothered to try it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Margie, Did you ever have high amonia levels on a blood test? Some doctors don't believe in mild HE w/out high amonia readings. I am in Hepatologist limbo right now. Don't have anyone overseeing that right now. Isn't that awful? I've been so sleepy lately, but in so much pain. Take care, Cheryl Brain Fog > So far it seems nobody else in this group has recently mentioned (for > the newcomers) RX medicines used to treat brain fog. > and > strongly suggest looking into taking Xifaxan. > > Margie in MO > PSC DX 3/99 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Margie, Did you ever have high amonia levels on a blood test? Some doctors don't believe in mild HE w/out high amonia readings. I am in Hepatologist limbo right now. Don't have anyone overseeing that right now. Isn't that awful? I've been so sleepy lately, but in so much pain. Take care, Cheryl Brain Fog > So far it seems nobody else in this group has recently mentioned (for > the newcomers) RX medicines used to treat brain fog. > and > strongly suggest looking into taking Xifaxan. > > Margie in MO > PSC DX 3/99 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 25, 2009 Report Share Posted March 25, 2009 Margie, Did you ever have high amonia levels on a blood test? Some doctors don't believe in mild HE w/out high amonia readings. I am in Hepatologist limbo right now. Don't have anyone overseeing that right now. Isn't that awful? I've been so sleepy lately, but in so much pain. Take care, Cheryl Brain Fog > So far it seems nobody else in this group has recently mentioned (for > the newcomers) RX medicines used to treat brain fog. > and > strongly suggest looking into taking Xifaxan. > > Margie in MO > PSC DX 3/99 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Margie, Thanks for the information. I'm thinking all my pain is associated with my recently dx Relapsing Polychondritis. This rare disease gives me a whole new level of symptoms to have woven into my already complex health issues. Some doctors are so conservative that they won't acknowledge things like edema/ascites, HE, itching,pain, etc unless they can see it, touch it, smell it, you know. I'm so glad that you have the treatment that has been helping you. I'm going to check in to it when I get to see a doctor again. I am getting weary of trying to convince doctors that I am sick. I mean my weight is down to skeletal, my cheeks are sunken, it's all dark around my eyes, I have horrible skin infections and sores. Yet, while they acknowledge the illnesses, they seem to be so casual about it all. I can't stand that attitude. Let me know what you find out when you do see the doctor. Take care, Cheryl Re: Re: Brain Fog > Cheryl I have never had ammonia level > > Margie in MO > PSC DX 3/99 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Margie, Thanks for the information. I'm thinking all my pain is associated with my recently dx Relapsing Polychondritis. This rare disease gives me a whole new level of symptoms to have woven into my already complex health issues. Some doctors are so conservative that they won't acknowledge things like edema/ascites, HE, itching,pain, etc unless they can see it, touch it, smell it, you know. I'm so glad that you have the treatment that has been helping you. I'm going to check in to it when I get to see a doctor again. I am getting weary of trying to convince doctors that I am sick. I mean my weight is down to skeletal, my cheeks are sunken, it's all dark around my eyes, I have horrible skin infections and sores. Yet, while they acknowledge the illnesses, they seem to be so casual about it all. I can't stand that attitude. Let me know what you find out when you do see the doctor. Take care, Cheryl Re: Re: Brain Fog > Cheryl I have never had ammonia level > > Margie in MO > PSC DX 3/99 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 26, 2009 Report Share Posted March 26, 2009 Margie, Thanks for the information. I'm thinking all my pain is associated with my recently dx Relapsing Polychondritis. This rare disease gives me a whole new level of symptoms to have woven into my already complex health issues. Some doctors are so conservative that they won't acknowledge things like edema/ascites, HE, itching,pain, etc unless they can see it, touch it, smell it, you know. I'm so glad that you have the treatment that has been helping you. I'm going to check in to it when I get to see a doctor again. I am getting weary of trying to convince doctors that I am sick. I mean my weight is down to skeletal, my cheeks are sunken, it's all dark around my eyes, I have horrible skin infections and sores. Yet, while they acknowledge the illnesses, they seem to be so casual about it all. I can't stand that attitude. Let me know what you find out when you do see the doctor. Take care, Cheryl Re: Re: Brain Fog > Cheryl I have never had ammonia level > > Margie in MO > PSC DX 3/99 > > > Quote Link to comment Share on other sites More sharing options...
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