SX - Mental Confusion?

[singinlady]

My husband started Pegasys/Ribavirin on June 3rd. He's been suffering the exhaustion, insomnia, restlessness, nausea, and now is starting to have mental confusion (yesterday) that is really bothering him. He had to actually leave work yesterday because he could NOT think straight. It's happening again today? He's tried to calm down, but that doesn't seem to help. Is this maybe because of the insomnia or is this something he can expect for the duration of the Treatment?

[flcyclist]

I'd suggest to start a new thread with your question since the last post in this thread was from 2005.  Sounds to me like you should be seeking a qualified hepatologist to guide you and there may be a trial for you that would keep your costs at a minimum.  Some are in a similar financial situation that might have suggestions.  

[Dee1956]

Hi there! This is an old post, you will get answers if you go to the top of this page and "post a question" many people will want to help
Good luck
Dee
p.s. this does qualify for disability

[michigander311]

I found out that i had hepc in 2004 and started interferon with all classic symptoms seemed to work but mojor
Discuss with gastroenteroligist pawned me off on interns and a spouse with no idea and no will to understand
Now 9years later virals tur the roof again and major thinking and processing problems cant think straight
Career going down the tubes loosing my job is there dose this disease qualify for disabilty any info would be helpful                                                                  
                                                                                                                            Thanks michigander 311

[Dank Wizard]

A perscription med called lactulose.

[singinlady]

Oh... How did you get your amonia level down?

[Dank Wizard]

High ammonia level can cause confusion. I had the same problem but once I got my ammonia level down to normal the confusion went away.

[Tony-z]

Was That Toast with eggs or without....Scrambled,,,That I can relate to.....Just cant seem to remmember...






                     Blessings


                         TonyZ

[singinlady]

VERY good point... I never thought of it that way. You're right, we should probably search for a new Gastro who has HepC experience. thnx

[Laika]

My PCP would be clueless as could be about monitoring a person for hepC.  My feeling is that this might not be a very good idea.  If your husband has some of the problems that may arise during treatment, the ignorance of the dr could cause him further difficulties.  Here are some examples:  when your hemoglobin gets too low, your dr should know to prescribe you procrit (to boost your hg) and not reduce your ribaviron except as a last resort.  Some drs just reduce the riba right off.  When your wbc's get too low, they can prescribe you neupogen to boost them back up...but some drs just want to reduce your interferon dose.  Dose reduction may jeopardize your killing this virus.  Another thing that happens in a small percentage of cases is loss of one's thyroid.  If this should happen, you do not want your dr to take you off treatment!  You can take thyroid hormone along with the hepC treatment.

The point is not to have anything jeopardize your treatment.  Do it right, do it ONCE.

I would try to find a good gastro with plenty of hepC experience or a hepatologist.  You can always post here to hunt someone good in your area.

Laika

[singinlady]

Yeah... the anxiety... WHEW! I love what you said... "I have to wrk twice as hard to think half as much" Isn't that the truth! The doctor's office is so pompous that when they returned his call about the lab slips they never even asked how he was feeling. Can you believe it? He wants to find out if our Primary Care Doc can do his regular monitoring and then he only has to see Dr. Pompous for his milestone checkups. If that is not an option, then I think we will have to shop around for another Doc.

[singinlady]

Scott... Yeah, my husband is in his fourth week right now. He was pretty much pale as a ghost this morning. I hope the lab slips come soon. The Brain Fog posts are great! Kind of makes him feel like he's not alone in all of this. That in itself helps. You are right... It's never the same couple of bad days and you can never predict how you might feel. Right about when he feels like he is not doing so bad, BAM! We are very glad to be getting all of this wonderful support! It really does make a difference. Thnx

[singinlady]

We actually heard back from the Doctor's office yesterday (miracle) and they are sending him all of the lab slips he will need, so he can just go to the lab down the street and get his blood drawn. I am anxious to see what frequency they will be for. Man, you must have died when you realized you never gave your boss the phone call... Maybe we should start calling it Brain Smog instead of Brain Fog, because it stinks... lol

[cuteus]

if he is getting anemic, you don't want to overexert in the exercise department. Severe, chronic anemia can bring cardiac problems.  When I tried "making up" missed riba doses, I would get some palpitations also. you won't know until the cbc gets done which one is causing it.

[honey1616]

LOL Califia summed it up nicely,,,,Scrambled!  Very common on the meds and I still after being off,,,,have blank thoughts at times!  Your hubby needs to be monitored in beginning,,,, monthly,,,Very important first 6 months of tx to see how he is doing and reacting.  Get a new Dr.  I changed up at 6 months tx and finally got a dr that knew what was going on.  Good luck to you both!

[singinlady]

It's good to know that he is not alone in this... I will have him ask the doctor for some help with the side effects. Sorry you had to suffer the mental confusion as well. Perhaps an AD would help keep the panicky feeling at bay. That seems to compound everything. Thnx

[singinlady]

Yeah... I agree... we may need to shop around for a different Doctor. We are hoping that his Primary Care Doc can monitor him and he will only need to see his Gastro for his milestone PCRs. If we don't hear back from the doctor soon he may just need to call our Primary Care Doc for a CBC at the very least.

[singinlady]

I'm glad to hear that your mental confusion seems to have let up some. Leads me to believe there is hope. :) It seems like you two are right on track with each other. He too seems to get heart palpitations. It kept happening last night and he felt like he had to keep getting up and walking around. We should probably start on some kind of exercise routine to see if that helps. Geeeez... it seems like as soon as you start getting relief from one sx another one creeps in... He is finally starting to get some relief from the nausea, so we are happy about that. A good night's sleep would probably do him wonders... anyone know where we can get one... hahahahahaha

[omyst]

I wholeheartedly agree with cuteus about getting the bloodwork done soon. I also started Pegasys/CoPegasys on June 3rd and I already had a blood test checking for anemia (on June 17 ) and will get those results today.

I had seveve mental confusion for a couple of days but this seems to have let up, but I am not 100%. I have lots of fatigue but my most troubling symptoms have been some evening heart palpitations. I have a lot of ups and downs but my symptoms seem to be improving since I recently added more protein and calories to my diet ( I had a very low fat diet for the last 7 years ). I also have a bike machine at home and found that getting a moderate workout helps a whole lot ( I spend about 45 minutes on it ). Naps also work well for me, especially after lunch.

Good luck, I hope your husbands symptoms improve

[singinlady]

I just wanted to take a moment to thank all of your for your posts... It means a lot to us to know that there is a support system out there. You are all very kind and we appreciate your help!

[singinlady]

Oh... I never thought about that... maybe we will just continue with our casual evening stoll around the block until we make sure that his RBC is where it needs to be... Thanks!

[cbee]

I had standard bloodwork done every 2 weeks.  It is really important to monitor how these meds are affecting you.  Just as an example, in one week my white blood count went to a little low to ending treatment low - luckily my dr. prescribed Neupogen so I didn't have to stop in my last few weeks of treatment.  

Talk about brain fog.  I sound like my grandmother did.  Calling everyone 4 names before I get it right, can't remember names of movies, etc.  Once someone called for the attorney I work for and I asked his name and instead of announcing the call to the attorney - I just put the caller on hold and went about my business instead of telling my boss who was on the line.  Of course, my boss yelled out of his office "who is on the phone" five minutes later!

Good luck to your husband.  Tell him to take it easy.  It's a ride.

-cbee

[jane777]

The mental confusion might not end until a few months after tx ends.     It's all part of the experience.  I didn't know where I was most of the time.  It's hard.

[dutch_boy]

Everyone's advice to get his blood checked ASAP is very important. In my 4th week of treatment I had all the symptoms your husband complains of and mine was due to my hemoglobin dropped way too low....VERY FAST from week 3 to week 4!  This is unpredictable.  My doctor for the first 3 months had my blood labs ordered every 2 weeks and now at week 21 I'm every 4 weeks as things seem to have stabalized (low levels but stable). You will be tired of hearing everyones "brain fog" stories but at least they keep us entertained here!  We all seem to have some degree of this and it seems to be "normal"for the majority....some worse than others.  I seem to get brain fog about 2 days a week.....never the same days.... I can't seem to feel like I've woken up from sleep....very annoying!  Those days I try not to put too much on my plate of "to do's"....I've gotten in the car many times to go to do an errand and can't remember when I get on the road where or why I'm going somewhere.  Parking lots are good for re-grouping your thoughts  and reminding yourself of WHAT I was doing! The good news about these sides in my experience is that none of them seem to last.....one thing happens, dissapears or subsides when another one raises its head.  You have to just go with the flow and keep a good attitude.  Get the blood work done and let us know what happens. Until then I'm thinking of you both.
Scott

[singinlady]

Hahahahaha... sucks about the ice cream! I'm hoping that things will pan out a bit once he gets a little more used to everything. Right now, he panics when he can't think straight and then is anxiety ridden. He's okay at home, but at work it freaks him out. He has a very crutial position right now building equipment for a HUGE Naval contract, so the pressure is on! I quess he'll need to figure out a few coping mechanisms for when it happens.