Brain Fog with Hepatitis C and Cirrhosis

Brain Fog with Hepatitis C and Cirrhosis

brain fog ostrichIn case you have not noticed, brain fog with Hepatitis C and cirrhosis are like peas and carrots, shoes and socks, spring and flowers. They come together. Let me just start off by saying that I am having a brain fog moment now. I type a sentence and then stare at the computer screen. This is not going to be one of the most well researched blog posts that I have done. I was all set to write. I have several topics ready. I just can’t. I am brainfogging. Zoney. But I CAN sit and 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 the result of any number of health related issues such as autoimmune problems, arthritis, lupus, fibromyalgia and others. It can cause you to feel lonely because you do not feel you can communicate well. That leads to depression and isolation. I hate to think of you handling this alone. I’m glad you came by and we can sit here and be foggy together. If you are on the Hepatitis C Treatment, know that Ribavirin, Sovaldi, Interferon, or any other combo can intensify it. But living with Hepatitis C can too, so it’s best to be rid of the virus.

There are a few things that we can do for brain fog. I’m getting to that. Do you talk in circles when you get than zoney cloud over your thoughts? Then you can follow this blog cause that is what I am doing right now! You’ve got to laugh.

That is what brain fog looks like: Your beautiful brain begins to fade into the background as some invisible cloud comes in. It settles right on your thoughts. You can look up and find that you have been sitting in the same spot, staring at the same thing for who knows how long.

You start a conversation only to be told that you have already said that… 3 times.

You ask a question and everyone in the room looks at you. Then you realize that you already asked it… 5 times.

So you sort of fade into the background. It can be a lonely place.

Here is what I know from my own experience. I give all that I have with my friends and loved ones and on the job . Therefore, I try to minimize those things that can create brain fog for me. Maybe it is a form of denial. If I do everything to the best of my ability, my fuzzy thinking is not as bad. I hope you will find something that works for you too.

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. If I do not eat for several hours the urge to grab a quick unhealthy snack overcomes my better judgment. The truth is, when you are in a brain fog state, you do not have good judgment. That is why it is important to plan ahead and have healthy snacks that are easy to get to when you feel the low protein or low sugar slump.

Sleep – I know all too well that this is easier said than done. Hepatitis C is known to cause sleep disruptions. The Hepatitis C treatment gives you crazy side effects that can prevent sleep. Cirrhosis makes you tired ALL the time, but unable to sleep well for very long. This is not a Wah wah, or maybe it is, but if you can try and establish a sleep pattern, you will be better off. Even if this means lying still in a dark room and just “resting”, your body will rejuvenate. Ask your doctor if a sleep aid is right for you, especially during treatment for Hepatitis C. I wrote a blog about those tossin’ and turnin’ nights and you can read it here.

Medications – If you have cirrhosis, Lactulose can help with severe brain fog, also known as encephalopathy. Since I just mentioned sleep aids, a little bit can go a long way with a sick liver. If your liver enzymes are out of wack, your may not need as much. Please talk to your doctor about your meds as they relate to brain fog. I can take 1/2 Xanax and sleep forever!

Hepatitis C Treatment – Talk about zoney! These drugs can leave you 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 Victrelis, Boceprevir, or Sofosbuvir Sovaldi I think the results are the same regarding mental impairment. (That’s a clinical sounding term for brain fog)

brain fog space cadet ihelpcWhen you read some of my posts and find spelling errors, or typos, please excuse me. Inside my head, I am still Karen. I may be a little fuzzy, but my “self” is still there behind the fog. I try and edit when the fog lifts. If I am too foggy, my student’s papers will not get graded. They rely on me having a sharp eye for errors. I never let them down. If there are bills to pay, I put it off until my mind is fresh.

Depression - See, I think brain fog brings a little cousin with it. I call that sadness. It breaks my heart 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.

It makes me feel good to know that you are out there in cyber-land battling it out with me. I just love reading your messages and comments. We are in this together. I laugh thinking how funny it would be if we were all in the same room while having a brain fog party? We would definitely 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.

brain fog muppet partyXoxo from your best friend who has Brain Fog with Hepatitis C and Cirrhosis, whatever her name is:)

For a list of topics like treatment risk, varices, or nutrition – click here!

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30 thoughts on “Brain Fog with Hepatitis C and Cirrhosis

  1. 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.

    1. 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.

    2. 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

      1. 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;)

  2. 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

    1. 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.

  3. 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!!!

    1. 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:)

  4. 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.

    1. 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:)

      1. 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

        1. 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:)

    2. 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.

      1. 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:)

        1. 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……

          1. 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:)

  5. 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

    1. 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:)

    1. 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…..

      1. 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:)

  6. 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

    1. 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:)

      1. 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

        1. 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:)

  7. 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

    1. 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:)

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