Brain Fog with Hepatitis C and Cirrhosis
In case you have not noticed, brain fog with Hepatitis C and cirrhosis come together like peas and carrots, shoes and socks, spring and flowers. I am having a brain fog moment now. Zoney. But I CAN still tell you about my experience with brain fog with Hepatitis C and cirrhosis.
What is brain fog? Mental confusion, inability to focus, extreme forgetfulness, short attention span, and the list goes on. It can be caused by autoimmune problems, arthritis, lupus, fibromyalgia and other things. It can create loneliness when you don’t communicate well. That leads to depression and isolation. If you are on the Hepatitis C Treatment, know that Ribavirin, Sovaldi, Interferon, or any other combo can make it worse, but living with Hepatitis C can too. It’s best to be rid of the virus.
What is Brain Fog?
An invisible cloud comes in and settles on your thoughts. You may find that you have been sitting in the same spot, staring at the same thing forever.
You start a conversation only to be told that you have already said that… 3 times.
So you sort of fade into the background.
It can be a lonely place.
Tips for Brain Fog
Diet – I just keep singing that same old song: You are what you eat. It is so true with hep c and liver disease. Our liver stores, processes, and then releases everything we need to keep going. When there is an imbalance our whole body takes the hit, including our brain. Even those in good health can have a food coma, but for us, it’s much worse because our liver does not cycle the food out fast enough. Sugar? It just keeps cycling. Protein? Yep. Cycling. It can make us feel jittery on the inside, yet immobile and unable to think clearly. That’s the brain fog.
What can we do? Eat small portions every couple of hours. I rarely eat a full meal. I even snack on protein just before bed. Toast and peanut butter, a slice of swiss cheese, or ½ cup of greek yogurt usually help me to wake up feeling better. Plan ahead and have healthy snacks that are easy to get to when you feel the low protein or low sugar slump.
Sleep –Hepatitis or liver disease causes sleep disruptions. The Hepatitis C treatment gives you crazy side effects that can prevent sleep. Cirrhosis makes you want to NAP ALL the time. Try my tips to establish a sleep pattern. Ask your doctor if a sleep aid is right for you, especially during treatment for Hepatitis C. Read here about my tossing and turning .
What about Medications?
Medications – Lactulose and Xifaxin can help with severe brain fog, and here’s a Totally Wiped Out Me making YouTube about that, also known as encephalopathy. A little dose of sleep aids can go a long way with a sick liver. Talk to your doctor about your sleep meds. I can take 1/2 Xanax and sleep forever!
Hepatitis C Treatment – Talk about zoney! These drugs left me like like a space cadet! The brain fog I live with now is nothing compared to what I experienced on Telaprevir, Interferon, and Ribavirin. If you are taking other drugs,
When you read some of my posts and find spelling errors, or typos, please excuse me. Inside my head, I am still Karen.
Space Cadets with Brain Fog
Depression – See, I think brain fog brings a little cousin with it. It ‘s sad and frustrating to know that a perfectly good mind is not available to me. It is very frustrating. I know that you feel it too. Brain fog can make you want to withdraw from life just when you need support the most. That is one of the reasons that I take diet, nutrition, and lifestyle so seriously. I do not want to miss a thing. Check out my youtube on Depression.
How funny would it be if we were together while having a brain fog party? We would def have to wear name tags. Or.. where I come from, we would just call each other “hun” and forget names altogether. I like the sound of that.
Xoxo from your best friend who has Brain Fog with Hepatitis C and Cirrhosis, whatever her name is:)
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44 thoughts on “Brain Fog with Hepatitis C and Cirrhosis”
I don’t think it ever goes away. Even After Transplant. I am 56, I have known about my HepC since 1998. I think i contracted it during a blood transfusion in 1986 when my gallbladder ruptured.
I had a Transplant in July 4 2012 due to liver failure and Liver Cancer, I am now 8 months out and while i am feeling like new. There are times i still have that blank digressing faint of thought during conversations and that not a good thing when you a Manager at work. I would be happy to help answer any questions.
I’m so happy that you got the transplant and are still able to work. What a miracle. I run into people our age and they have those blank moments too. I think we know the difference though. lol. Thank you for offering to lend support to others. You should email me at ihelpc.com@gmail.com. I really appreciate your comment and I’m so thankful that your body has accepted the new liver. Your comment made my day.
Hi Karen, thank you so much for writing about this. I have cirrhosis, and am SVR from taking Incivek, Riba, Inf. I get better and have energy, then I have days where I am so exhausted. You know me as Dee1956 from MedHelp.
I wanted to tell you I think your blog is great.
I have a cold right now and it seems to add to the fatigue and brain fog. It is all I can do right now to get up. I force myself to get up then I think that maybe I am supposed to rest. I have read that the body heals when we sleep, what do you think about that? Some things I read say we have to make ourselves move or we lose strength. It is all so confusing to me. I like your idea of eating a bit every few hours. I am going to try that. Like you, if I wait, then I grab junk to eat. I try not to keep junk in the house but others bring it in so it is difficult. I try to tell people I can’t eat red meat and they seem to think I am wrong that I need the red meat for certain nutrients. Sorry this msg is so disjointed. I would love to know what you think about our livers regenerating…and our bodies healing as we sleep. Have your doctors said anything about that? Like you I only dye my hair every 8 weeks, hoping that it will not hurt my liver. In 2008 I was diagnosed as transitioning to cirrhosis.
Thank you
Dee
We made it through some tough times together, didn’t we? The invite is still open for you to share your story on the blog. You went through a lot hunnyo. It IS confusing when we try and think about diet, healing, and rest. I’m glad to see that your have your priorities – Hair color! I’m just happy to think that your cirrhosis will not get any worse now that you are SVR! xoxo Karen;)
I found your site, and just wanted to share.
Me: 54 yr old Hep-C prob from transfusion in 1963
I have NOT taken treatment as I saw all the people I used to deliver the “pegusis” to die from the treatment before the Hep-C got ’em
I now see a liver Hep-C expert in Miami and my MELD score has now gotten me “listed” for liver transplant
I have said for a year and a half to his “P.A.” that I feel “stupid” especially in the afternoon She did the routine test for ammonia but I was in the normal range-Do my hands shake? no
Well long story short-
When I became sick enough 6 weeks ago to not be able to work, my 2 sisters took turns coming in helping and caring for me. They also noticed this “brain fog” and that I would slur my words when in it. They insisted to medical professionals that I was NOT right!
I WAS encephalitic the drug Xifaxan 550 mg twice a day (12 hrs apart) and Lactulose as needed
has helped a great deal to lift the fog
Just FYI ever case, ever person, presents differently
I have also found that some of the hard protein (chicken,pork) effects me badly. Even though the dietitian said they were ok.
I am experimenting with what proteins work well-eggs? fish? salmon/yellow tail/tuna
I know yogurt is goodfor my diet and buy dry then re hydrate and cook lentils black beans chick peas also work well
I was also told by P.A. for a year and a half to “reduce my sodium” because they kept increasing the diuretics and I was still swollen (only a small portion was ascites) most was carried in legs and fat tissue- I was down to 300 mg sodium a day
(gee wiz-muscle cramps and electrolytes out of balance? well we have drugs for THOSE symptoms but thank God I was too ill to take them!)
I just wanted to say
WE are our best diagnosticians and we need to insist our Dr.s LISTEN when we know something is not right!
I hope and pray for you to do your best, take good care of yourself and get a support team together! I have always been the “care giver” and it was VERY hard to be able to accept the help when it was offered-all I can tell you is
You HAVE GOT to save yourself so you will still be around to help the people you want to help now
Bravo to you for listening to your body! That is so important. I’m glad your brain fog is better since starting the Xifaxan and Lactulose. The new medications have much easier side effects, so perhaps you might consider treating when they get approval. You have done a lot by taking control of your diet. Good for you. I have 2 sisters also and am glad that you have them to help care for you. I hope you will stay in touch. I’ll be thinking about you.
Hi, I was on the interferon and ribavirin about 12 years ago. I recently started Solvaldi and Ribavirin. Solvaldi was just approved in Jan. 2014. It is supposed to be a “Cure” for certain geno types, mine being one of them. The tx is not nearly as rough as the interferon was, however I do get foggy. Depending on your geno type, tx may require Solvaldi, ribavirin and interferon. Luckily I only have to do the two meds. I really hope and pray this is a cure. Good luck everyone!!!
Claudia,
Congratulations! You are so blessed to be able to take the Sovaldi. Who would have thought we would see the day that no interferon was needed? That is awesome for you!
The lower side effects do make it a lot easier. Brain fog – well that’s another story, right? We just roll with it and know that it will be over soon. Endurance is the name of the game. Ribavirin is just a harsh med. I was concerned about lasting side effects, but so far nothing has come up.
Thank you so much for stopping by and leaving a comment. I know that a lot of people have been waiting a long time for this. They will surely be inspired hearing from you.
xoxo,
Karen:)
Hi Folks. I have sincere empathy for all on here, have now failed 2x treatments, Teleprivar was hopefully going to be the one, the side fx on that little princess was close to evil. The disappointment on failing again has knocked me into a wavering depression, also my condition has worsened recently, where the dizziness is debilitating.
However I am hard on diet and juice and supplement in all the right places, great anxieties for the future, just approaching my 50th birthday and keep being slain by the worry etc.
Will be seeing my consultant next week and seeking to go on Sovaldi if available in the UK. Keep on keeping on. Kind regards.
Joe,
The sides of Telaprevir was a mess for sure. They don’t even use it any more and 3 years ago it was all we had! I simply can NOT imagine what it is like to fail treatment. I know many who have, and the disappointment must be overwhelming at times. Once I started treatment, I got a break from the virus. So while I was sick from the side effects, my liver began to heal immediately.
I am so sorry that you have not gotten that break – yet! I believe that the future drugs are in your favor dear friend. That future is closer than you think. I would love to hear that you cured on Sovaldi or any other tx.
As for the future, you are still young. You are taking control where you can as far as diet and lifestyle. The mental pressure is just as hard on you. I know you try to escape from the fear. We all do. Keep working on fighting the mental battle. The virus itself can create a mental mess and it is not easy to control. It’s easy for me to say all of this, but honestly Joe, I understand what you’re dealing with in many ways. Your open heart to have empathy for others is so touching.
When you lie down to rest, think of all the love that is coming across the water from my heart. I send strong thoughts and prayers to you tonight as I tuck in.
Peace and Rest My Friend,
xoxo Karen:)
Dear Karen. Your reply has lit my soul with joy and warmth, thank you for your insight and wisdom. I am ready to go for a 3rd TX, I will keep you informed.
Kind regards Joe X
Joe,
You light up my life Joe! 3rd round. You’re a tough one. Thank you for keeping me updated. I’m so happy to hear how short the new treatment is and how few the side effects are!!! All my best to you!
xo from your Best Friend in the battle,
Karen:)
Hang in there. I went thru 2 42 week courses of interferon and ribavirin, Neither worked.. Was a living hell. 8 Years later after all the natural treatments and thousands of dollars it finally ended with a visit to my Transplant specialist, I rembember the words like getting stabbed in the Heart ( You Have Liver Cancer). 9 Months later I had my transplant for what I was told that I was weeks away from hospis care. I Tell you this to give you hope. Their is a light at the end of the tunnel. You just don’t know when you will get there. Hang in, Stay Strong, Love your care taker. Mine was my three brothers after my wife left me when she found out.
Louis,
Let me start by saying I am sorry for not posting. Lots of hand pain slows me down recently. I’m working on it and getting better! I went through 43 weeks and I can never imagine what it was like for you to be a non-responder. Thank goodness that a liver came available for you at the right moment. What a life saving gift!!!!
Your words have encouraged me tonight. I know that everyone who reads them will be inspired also. It always means so much to hear of someone who has beat the odds. You definitely are doing just that!
I’m sorry to hear about your wife, but if that was her heart, then it sounds like you are better off. You can go into your future and build a new life with your new liver! Thank goodness for your dear brothers. I know your parents must be proud to see how you boys stuck together during your health crisis.
Have a wonderful week. I promise not to be so slow next time. But with brain fog etc, I hope you understand.
xoxo Karen:)
Karen, I am back at it again. Hep C has returned to my new liver. Lucky to catch it before any permanent damage.. I will be on the 12 week course of solvida and simeprevir and Pegg :”I think that’s how its spelled” which I am told is a wonder drug for the geno type I have. … I had Brain Fog “hepatic encephalopathy” I was on all the drugs to treat. Lactulose syrup, Xifaxin, the most effective thing I did was to cut out all breads and starches. Light on protein mostly from Beans and fruits and Veggies.. It did not fix the problem but it think its what kept me working as long as i was. G-d Bless us all who suffer from this Nightmare……
Lou,
I saw your comment and waited to reply. I felt really emotional at first when I learned. This treatment will be a great one for you honey. The 12 weeks is a much shorter time span. The side effects of these drugs are not as bad wither.
I appreciate you sharing how you dealt with brain fog. It is one of the most frightening aspects of cirrhosis. I had a fever w allergies the last few days and got bogged down mentally and physically. It brings such a heaviness. Maybe every time we feel bad we connect it to our more severe symptoms. Anyway, the fever broke and I can think a little better today.
That makes me think of you.. On treatment, you may have to deal with some of the flash backs to previous hard times mentally. Your body is going to be having a rough time again too. I’ll be thinking about you a lot and sending love and prayers. Don’t let it get you down. You WILL beat it this time.
xo Karen:)
Hi Karen.
I have now started a 12 week treatment, 1 super tablet of SOFOSBUVIR 400mg & LEDIPASVIR 90mg per day with breakfast. No ribarvirin no interferon, yay!
I believe I am in the first wave of this TX in the UK.
SFX after 3 days, light nausea no worse than the classic chronic HCV symptoms.
Feeling really positive and optimistic, after 2 other failed TX including Telaprivar 2 years ago, this could be the one. Will keep you posted, all my love and peace.
Joe Segar
Joe,
Buddy, I really believe this is the one for you! You must be so thankful for the no RIBA and Interferon. This will def be minimal side effects. Especialy after Telaprivir!
I’m certain that your group will be breaking records! It seems like it was forever in coming, but now it is crazy how fast the meds are moving in.
I hope your side effects are few and your VL is UND my dear friend,
All my love and thanks for keeping me updated.
xo Karen:)
Just want to say thank u
You’re welcome. And thank YOU for commenting. I’m surrounding you with love n hugs right now sweet one. We’re in this together. xoxo Karen:)
Hi Karen- I hope you are doing well… I have not posted in a while. However I wanted to update all on my progress. I have just completed the two 12 week courses of solvida and simeprevir. I had cleared the Virus within the first week. I have noticed Zero brain fog after the second week.
Hang in there everyone, I have been battling this for over 15 years. I think I won. Even with the somewhat modified life style because of the transplant. I am working, learning how to play the Harmonica and going back to Collage to finish my MBA.
I am Truly Blessed. I love my life again…..
I love hearing this!! Especially the harmonica part. lol. Really, though I enjoyed playing with it off and on for years. But going back to school! Wow! We are talking NO brain fog for you to get through that.
After all these years, it is great to see that you are finally finished with that virus. Now you can live your life with a new liver. Everything in the world is possible for you! I’ll admit to being nervous about a transplant. My brain has been SOO foggy lately. I guess it’s just part of the package. I had chicken for lunch and fish for dinner yesterday. I’m paying for it today. I am assuming that with a new liver, and no virus you can eat a healthy diet with some meats!
Dang! I’m so proud of you! This news really brightens my day. xo Karen:)
Dear dear Karen.
After 84 days on Sovaldi i am now UND. My 3rd treatment in 7 years.
I am truly blessed, I wish all of you on here hope & optimism Sovaldi is the game changer in this fight, even for Genome 1a cirrhotics like myself, the damager will be destroyed!
Peace and love Joe X
Dear Dear JOE!!!!
Yippeeeee! You are beating it this time. This brings tears to my eyes. That virus has done so much damage to so many people. Did you ever think we would see such great meds knocking it out like this? Finally… You can get a new lease on life. You’re gonna feel sooo very much better. I promise.
xo Love,
Karen:)
Dear Karen.
I never thought I would ever clear, this new treatment is a marvel.
I’m now imbibing a super liver regeneration diet and look forward to a new lease of life.
Keep on keeping on with this superb and beautiful blog.
Love Joe x
You betcha sweet friend. I can’t wait to see how a new lease on life will effect you.You’re not going to know what to do with all this energy.
I love you much and appreciate your support. Keep taking good care of yourself. Good diet and exercise, right? xoxo Karen:)
XXX
XXX back atcha 🙂
I was just diagnosed with hep c after spending the last 9 years trying to figure out what was wrong with me. I felt this thing 6 months after I contacted hep c, I figured this out, but never ever thought a body piercing could have been the problem. I went to several doctors looking for answers but was told I was probably just fat and out of shape. I have gotten mental fog from the start and my work was greatly affected. I would feel toxic alot and have felt sad and have isolated myself in my home for years. Im glad to hear about a new cure out there. I could not have tolerated getting any sicker. I have been unable to work but have had a hard time getting SSI and Disability. They say most people never feel the hep c virus. I, however have been sick from day one, and cant even see a specialist until next April. I have no income. Couldnt hold a job from this virus either. Its not fair. I wonder if anyone out there got Disability after diagnosed with this virus
It is heartbreaking to live with the brain fog as a result of the virus. It can have a huge effect on so many of life’s decisions. Thank you for sharing your experience. I’m very sorry that you had to go through it. It is a very lonely place in life for certain.
Are you going to be able to treat? Ask your primary care doctor or look at getting into a clinic. Hcv advocate has some great listings of organizations in your area where you can get medical help. They can also guide you for applying for SSDI.
Now that you have the diagnosis, you can begin to heal and get your life back!! You can take back the years that were stolen from you and make the rest of your life the BEST of your life. Check me out on facebook as ihelpckaren and you will find supports also.
All my best to you. Thanks so much for stopping by to comment. xo Karen:)
Hello Karen, I hope you had a nice Christmas, I was thinking about you so decided to stop by.
Seeing that Joe is now SVR made my day! I am so very happy for him.
Karen, I always thought that the virus caused brain fog as it progressed while other say it only happens with cirrhosis. What are your thoughts.
I hope you are doing ok, thinking of you
Love
Dorene
Hi, I was diagnosed in May with Hep C. I had Leukemia in 1992 and underwent chemotherapy. During the ROUGH treatment, I had numerous blood transfusions. The hospital immediately told me that I was 100% exposed to some blood contaminated with Hep C. I was checked and told I had the antibodies but not the virus. However, I did find out the May that I have had it for a minute. Actually, I can almost remember when the “cloud” came over me.
Anyhow, I was prescibed Sovaldi, Pegasys, and Ribavirin. But, before I could get the prescription($100k), which was over 6 months, my doctor informed me that there is a new drug again. This one is still Sovaldi, but has some additional meds that would eliminate the use of Pegasys and Ribavirin. Great news, right? ha! Now I have submitted to my ins to see if they will pay for the new. Anyone with experience with the new drug? I think it came out in November.
Here’s my issue. I have to work and be extremely alert to clients, as well as be resourceful and current. But, I find it difficult to focus. Not only that, but I’ve distanced myself from my oldest boys and almost feel like a machine. I know that sound crazy, but it’s true.
My question is, does any of this brain fog go away if I was cured? I certainly hope so!
Ah sweet friend Lewis,
Your message brings tears to my eyes. Yes, the story is familiar and so sad at what you’ve had to go through. Thank God for new treatments! I hope you get approved. Let me know if you need help because drug manufacturers also has patient assist programs.
Now, about your family. We ALL understand how painful it is not to have access to your brain. The GOOD news is that the brain fog gets soooooo very much better after you get rid of the HCV. I was just having a conversation with my daughter yesterday and it made me think how many conversations or situations I was unable to cope with due to the virus. During her teen years, I was kind of absent mentally and emotionally. It breaks my heart. The good news is that our relationship is healing. I’m praying that yours will too. You are going to be amazed.
I’ve written about working on treatment. It’s easier with the new meds and I was able to work the whole time. All my best dear friend.
xo Karen:)
Hi some of you know me as mrjloc i to have early stage of cirrhosis and hep c ill be going on treatment hopefully in a week or two will that clear ups some foggyness ?
Hi some of you know me as mrjloc i to have early stage of cirrhosis and hep c ill be going on treatment hopefully in a week or two will that clear ups some foggyness ? Any thoughts
Joe,
YES! The minute you go undetected from the HCV you will begin to feel better in many ways. Some of the medications can cause some brain fogginess, but not too bad. By the time you finish with your treatment, you will be AMAZED at how well you will be able to think. It’s a whole new world for your dear friend.
Good luck and Bless you!
xo Karen:)
I can’t wait, i have 1 more month to go
Good for you! Glad to hear. Please keep in touch, Dee
I’m so glad I found this right now! It Helps to know that I’m not alone in this. I thought I was going crazy. My depression is thrunning the roof. I keep thinking my husband is leaving me, my friends hate me, omg my whole mind is going haywire. There’s times, like this very minute. I think I’m loosing my mind.
Please forgive me being way behind. Older comments got buried under a computer glitch.
First, Congratulations on finishing treatment. Has it gotten any better since treatment ended? Please look at my new youtube. I did one on depression because I hear from SO many people who are suffering.
If you still have this email address, I hope to hear from you.
xo Karen
I’m so glad I found this right now! It Helps to know that I’m not alone in this. I thought I was going crazy. My depression is thrunning the roof. I keep thinking my husband is leaving me, my friends hate me, omg my whole mind is going haywire. There’s times, like this very minute. I think I’m loosing my mind.
The tests show that I’m cured, but my Dr. is having me finish the full 6 monthe of treatment, this is my 2nd time. The 1st one failed (the old treatment). So if it is cured, I don’t understand why this brain fog and depression is still so strong, or even stronger. Can anyone help?
Hello!
Thanks so very much for stopping by. Wow. You are really going through it today. The new treatments are good, but it sounds like you may have liver disease. The requirement for extra time on treatment is to make sure that the Hepatitis C Virus is totally GONE! I had to do almost a year of it and I’m glad now. There is no more Hep C in me!
As for the craziness. Oh my.. I hear you girl. Let me tell you that I believe it’s from a couple of things.
1. The medication. It can make you feel like you’re losing your mind. Just hang on. Try some of the tips I put in other posts. Click on the “start Here” button on the home page. (with the checkered flag) and look at the list of blogs. I offer so many of my personal tips that saved my sanity.
2. Hepatic encephalopathy may be part of your problem. Ask your doctor about it. They use medicine for it. I don’t know if they will put you on it while you’re on treatment. I would definitely ask.
3. Your family and caregivers are probably thinking you’re bonkers. Mine did.. still do sometimes. Listen honey. We do the best we can. We quiet the crazy thoughts and take it one day at a time.
You’re going to be fine. You’ve survived another day. You’ve had some mental pain and anguish, but you’ve survived. Do it again tomorrow. Soon the virus will be a thing of the past. You can begin to heal. It’s all going to be ok.
Feel my hug through cyber space?
xo Karen
I recently got diagnosed with hep C. It looks like a majority of people dealing with this are older. I’m 24. I can’t concentrate at all and it’s showing at work. With the confusion, anger and depression, I think I’m going to end up failing all of my classes this semester. Before this, I had a 3.8 GPA.
I went from being proficient in school and work to being incapable of either. I feel so angry because most of any poking and prodding done to me has been in a medical setting, meaning that I got this from an institution and people I trusted.
Hello, I am so sorry, I know the shock and pain of discovering you have Hepatitis C. I did not find out for 30 years so a lot of damage had been done.
In your case, you are very young and Hepatitis C moves very slowly. There is new medication that can be taken for 8 to 12 weeks and can cure you.
It is much easier than the old treatments that included interferon. As time goes one you will adapt to this new you and your brain will wrap around it.
I wish someone had told me. I was so upset I could not think or discuss it for months. I could not figure what I had done to get this virus.
It takes time to adjust to the news. I am glad you found out now vs 20 or 30 years from now. Depending on what your doctor says you can finish up
your college and then treat it. I was told there is no rush in the early stage. Of course this will be up to you. Again, I am so sorry. I wish you well.
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