Hep C Discussion Forum

numbers, math i can do it but it is relay hard.

Yeppers, it's almost 11 months after tx eot and yes, i am having issues with my memory now. seems i can't remember words to songs i've known for decades and i'm quite the car singer and now i can't remember how they go, which i find disturbing. it may not seem like a big deal, but it is to me. i'm taking all my vitamins and eating right, exercising daily. hmmmm. wondering how much of this is left over pegasys. Good news is my thyroid tested aok this week. My t3,t4 and tsh are all very lovely. thanks for letting me chime in on this. have a nice weekend all!

Wow...the toothpaste/prep H was a bomb...I don't know when I laughed so hard ...just what I needed...My hair is falling out like crazy...just call me PATCHES LOL...My memory is shot. I'm writing a personal statement for admission into grad school, and I'll know the word that I want to write, but it will escape me....And for the second time since I've been on treatment, I walked out of the house without putting on a hat, headband or other gear...PATCHES walked down the street about 6 blocks and then realized that my patchy hair was out in the open for the world to see.  Was I going to run back home and fix the situation, or keep moving and pray that I didn't run into anyone that I knew...that would certainly be a miracle, since I know so many people in the neighborhood and the storekeepers. Of course I saw people and tried to disappear...like I was invisible woman LOL. Anyhoo...I made it back home...me and my patches....

Thanks guys for all the extra insight you've offered on memory loss. 

It's good to hear all the different perspectives and experiences.   Caroline

Hi Carolinemy memory is really horrible lately and I'm not even on treatment yet.  Fatigue also.  As I'm aging it appears these HCV symptoms are increasing.  I find lists are working for me.  Never used to keep them much before.

Good luck!

thank you for pouring out your heart to us -

my experience with tx was pretty bad. i started using a methyl folate supplement during week 8 for the severe depression and emotional problems created by the chemical imbalance caused by the interferon.

i have some genetic issues that made me more susceptible to it. not to say that you do though.

i did some posting on what happened to me if you want to take a look. let me know if you have any questions. i'm here to help.

i'm so sorry for all the troubles this tx has caused for you.

i hope life gets better for you soon.

Thanks everybody,

And I see that this problem is not rare, scarier than anything I been faced with before.  I stay away from this sight, not because I don't appreciate all the wisdom, strength and input.

This will be short, not because I don't wish to speak. There is so much going on that I would want to remove anyone's hope, but as I write this I am in my local library.... I made here with my laptop.

In truth the last two days I have, and better still those that were my friends before starting treatment, say I look so much better than even a week ago.  I actually do feel better, was able to get out do a little yard work this morning, racked up the front lawn.

I too have started taking a low dose of sequel 100 mg, then I too have 50 mg tabs if I feel myself going over the edge.

After reading about others experiencing the same thing..... I believe age has less to with it than I would like to claim.

I truly am grateful for those who have not had to suffer this delima, and I have to catch myself from discounting those who have had no side effects, which troubles me too because that means I don't believe some things I read . Forgive me, for being so distrusting.

Since I am on a clinical trial without interferon, with ribavirin, I had felt there would be few side effects.  In fact the trial data released said there were few side effects. 

I just found my riding lawn mower key --on my desk???  I have trouble remembering bills.  And I forget to file things where I can find them.  It has gotten worse the last 5 weeks.  Most only did 12 weeks on this trial, so maybe it was not so difficult for them.  Right side pain and stomach pain have become a daily event.  Just have a week to go and I am hoping that  pain and memory get better when I am off the meds.  

I live alone in a rural area so I really need to depend on myself.  Although my memory loss is not great, it is very frustrating.  And my lack of energy is really a challenge.  If I don't do it, then no one does.  And it is so annoying to drive 8 miles into town and not remember why I went there. 

I feel sure it will be better once I am off the meds.  Guess the meds have not affected my optimism.

Jim--  It was 70 here on Saturday and 14 here last night.  I plan to return to my supplements as soon as I am through with treatment.  At my age, I need all the help I can get.  If my virus remains UND, then it is time to start helping the liver to heal--at least that is my belief.

SuziQ 

-- Edited by suziq on Monday 6th of January 2014 02:54:06 PM

I had something to say about this memory loss topic but I forgot what my point was...:(

Seriously, we all can't be experiencing it because of age. There is definitely something going on with me too. Thought process is a little off for sure. I haven't been taking any supplements for about a year now. Does anybody see any improvement with them? ( Fish oil, multi vit., e, d, b, folic acid. Any others that people are using that seem to help? )

Almost 60 degrees here in NJ today. Going down to 5 tomorrow. Weather patterns are insane, can I blame them for my lack of mental clarity?

Have a great day everybody.

FYI, I was only on Interferon for 2 months. Riba, a total of 8 months over a 10 month period. And I was on 7977 ( Sofosbuvir ) for 6 months w/ the riba.

I enjoy this forum! I am 8 months post tx.
Energy level is good:)
Memory not as sharp as I would like it.
I have trouble with spelling words I always
Knew how to spell!
I use to be in mid sentence and forget
my point of conversation. That was scary
But has greatly improved.
I can still cut a great haircut:) and do about
Anything else. I also have some joint issues.
I was on a brutal 48 weeks tx w/Invicek.
I hope everyone on the forum memory will continue
To improve as it can be scary!
Malcolm, you are so BRILLITANT you wouldn't
Notice a little memory loss!
All and all I feel great! I am Hep C free
And feel better than when I started tx.
Bill, hope to see you Hep C Free soon.
Xxoo

newmex wrote:

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I am still on treatment but memory and focus is getting pretty sketchy. Cant count the times I have gone into a room to do some thing and forget what I went for, or have my meds in my hand and when I get water to wash them down they are already gone. So did I take them? throw them away? put them back in bottle? Try to keep them straight in pill container, but some times that's just too long to focus, from popping the container to swallowing, its amazing how many ways there are to get side tracked. Looked for my glass of water I just poured the other day for ten minutes, until my wife noticed I had the glass in my hand as I looked for it. She thinks its all pretty funny so far, but im gonna wipe that smile off her face. Next time she has a mouth full of tooth paste, im gonna tell her "Oh crap, don't use that tube, I thought that was Preparation H last night," haha that will get her attention.

---

I can totally relate to this. It was like someone flicked the light switch off. I was only on Victrelis for 30 days and a lot of it cleared up pretty fa

That being said, my cognitive skills have noticably slowed down. I havent gone back to work yet; kind of scared. I feel stupid at times.

Memory loss?

Absolutely and pretty scarey. I have real short term memory and my biggest fear is the drug companies won't admit it and use age, family hist as a scape goat

My last TX lasted 74 weeks ( yup 74 not a typo ) I just coming up on a year post TX and as you know Virus came back so I've got to do something again soon. So sofosbuvir will be better but with what? No Interferon or riba for me, no use in touching them again in my case or by my choice. I am waiting to see what happens wit Intf free TX

  My wife see's it, i know it and don't know if its going to stop or get worse. I guess brain fog mem loss is better than liver failure X plant etc so I'm just sitting.

Bill S

rotting to the core wrote:

---

This is such a personal topic. I finished a 48 week treatment plan, easy one I know.....dual therapy. ( peg and copeg ). But I too find the mental side effects are so troubling I have begun to wonder whether or not I destroyed any hope of any quality of life. I spent two days in the cardiac unit, New Years Eve and New Years day. Just to find out my physical side is recouping great, but my brain chemistry is wack. I spoke to my PCP yesterday and she too is unclear if I will return to normal.

At the moment there is no way I can even go to the store by myself without fear of not finding what I was sent for or  my way home. Sounds ridicules but that is now my life... for the moment.

I hope I am just being stupid, but I am understanding why my step son took his life on Nov. 4th. 4 days after I completed treatment He had been treating with topomax for 8 weeks. But he said he felt as if brain was melting and could not be a burden  to those who love him.

I was a Quality Engineer at Northrop Grumman for gods sakes and now even basic algebra sends over the edge. Now I can't trust myself to drive.

So I am understanding I am a rare case.         

I have spoken to two Psychs with Phd's and they questioned the wisdom of my treating in the first place at my age. I too wonder why my Dr.s pushed for me to clear the virus if the possibility of such an outcome was possible. I hate to sound negative, and yet I miss being the person I once was, always with the ability to speak with others and having hope and given others hope.

Now I am afraid I have too become a burden to those I love and who love me.

Please pray that this too shall end. 

-- Edited by rotting to the core on Saturday 4th of January 2014 09:08:53 PM

-- Edited by rotting to the core on Saturday 4th of January 2014 09:10:56 PM

-- Edited by rotting to the core on Saturday 4th of January 2014 09:12:24 PM

-- Edited by rotting to the core on Saturday 4th of January 2014 09:13:23 PM

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Timothy,

So sorry to hear about your step son and sorry,didnt mean to make light of a subject so personal to you. Some days I cant remember something I did 2 minutes ago, next day can remember leaving my glasses somewhere a week ago. Just kinda comes and goes. Was worse last time I was on and  treatment, and this time am taking anti depressants and they help me all the way around. Lessens my anxiety, raises my mood, which in turn seems to lessen my side effects. All I can do now is try to finish the treatment, and I try to use some humor sometimes, and I hope I don't offend any one. Just wanted to let you know, wasn't my intent to bring up any hurtful feelings. Hope every thing gets better with you, if there is ever any thing I can do for you, let me know. Some times, there is nothing we can do, and some times a little time is all it needs. Hang in there, if you ever need to talk, send me a line,     

Hi Timothy,

I'm sorry Brother for all the memory problems. I'm certain that must be quite a concern of yours and rightly so. What a tragedy to have lost your step son to suicide, I'm very sorry for his loss and your family. That's an awfully rough thing for any family to handle and I hope you all find peace in your hearts and minds soon.

What happened that placed you in the Cardiac ICU, if I may ask? You've had a mighty tough period in your life lately and I'm praying for things to get back to the normal you're searching so hard to find. 

When did you finish treatment? I've been done with triple therapy for 4 weeks and the memory is slowly clearing up, but there are still moments when like you I find myself wondering what I'm doing and why am I there. Sometimes with something in my hand and wondering what I'm holding onto that for. But it's coming around and I hope things improve for you soon.

Please trust that things will turn in your favor. You seem very eager to have the life you had and that's the right attitude to have. Don't ever think that you're a burden to anyone. You're obviously a very bright individual with the desire to succeed and if I may say, you've likely got a family that loves you very much and would agree with me that you are not a burden, but a valuable part of their lives. Keep the door of communication open with them and your health care doctors. Let them know how you're feeling now and talk about it. Okay? Hang in there buddy! We care for you here, that goes without saying!

Tig

Hi Caroline,

I also had memory problems through Tx. There were times it was unnerving, because I would lose entire days. Like Bill, I wrote myself notes and relied on my wife for direction and reminders at times. I even went so far as to send myself emails and not delete them for a period of time! It has improved greatly but I do think it's going to be another one of those SFX that has to run itself out and who knows how long that might be. Tell him to be positive that it will correct itself eventually and buy an industrial pack of Post-It note pads! Good luck!

Tig

I can't remember if I used to remember more than I remember now.  Maybe I remember less. Oh, what a mess.

I did find my cell phone yesterday after having "misplaced" it for 10 days. 

Couldn't remember what I did with it.

Hi Caroline,

We all worry so much about post-Rx issues that we tend to focus on what's wrong with us.  The 48 weekers go through an extreme length of anxiety-producing, physically demanding punishment. It takes a long time to get over, and some symptoms are worrying. Time will heal most problems so lets hope it's only temporary.  Personally I did not have any problems with memory loss. Best of luck to you both. Cheers.