Has anyone had issue with this. The symptoms I suffered after treatment were almost worst because caused such severe brain fog. It has been since August 2012 and I still cant handle my job, big crowds, loud voices, and am so disorganized and nervous I spend my day walking around looking for stuff. I feel like I am living in someone else's head. Totally not myself. My job is tedious and requires organization and I am scared if I go back to early they will fire me for incompetence.
Please keep in mind, I started this treatment with a General Anxiety Disorder that had been under control for 4 years or more. I now have a Panic Disorder, social disorder, and generally a broken type A brain. Am I alone?
As you I finished treatment in August.I did have serious brain fog and dizziness for a couple months and light sensitive amongst other things.But now I'm ok it all subsided.I have a feeling it will eventually subside with you also. A lot of people with Hep C suffer with bouts of depression,anxiety attacks,mood swings,irratibilty ect..Usually after a successful treatment these things for most it goes away within a year post treatment.
i also finished 48 weeks of triple therapy in August, and i can identify with much of what you are going through. i am experiencing attention deficit, memory loss and am generally confused.
for example a couple of weeks ago i needed to buy something at the store. i go to the car to go to the store and realize i don't have me keys. after finding my keys and driving to the store i forget what i need. then when i check out with the wrong items i discover i have forgotten my wallet.
i recently purchased a pair of diamond ear rings for my honey, but when her birthday came this week i realized i have no idea where they are. i am afraid i may have accidentally thrown them away.
physically i feel better than at any time during treatment and i no loger am experiencing the constant liver pain and muscle cramps i had before treatment. but the mental stuff is much worse then before treatment. i have read that i can take at least 6 months to start feeling normal after treatment. i think the brain may be slower to heal than other organs after being assaulted by interferon.
I didn't treat with interferon so though I did have problems with riba, it wasn't nearly as bad as what you have described.
I have read several posts from ppl who have treated who are going this. It seems to take 6 months to a year for many people to recover.
Eat well, take anti oxidants and keep drinking lots of water.
You are not alone.
All the best to you.
I read your post yesterday and couldn't comment, it touched me so. I have been where you are.
The worst part is losing the very essence of who you are, as if someone reached inside you and robbed you of your soul and your being. You feel violated and powerless.
One repeatedly hears the labels "depression, anxiety, etc." The effect of INF on your essence can be something beyond these labels, and they are inadequate descriptors.
I agree with the other posters that it does get better. I disagree with their optimistic time spans, especially for what you describe. It might take 2 to 3 years.
I have a theory, don't know if it is right. Interferon therapy can double whammy you. First, the drugs themselves damage your body while they are in your body. Second, a significant number of people suffer different, post-treatment problems. These are brought on by changes in the body's immune system caused by the drug. So as the drug leaves the body after treatment, the body's immune system goes haywire. Foods burn in your mouth. Thyroids fry. Arthritis appears. Psoriasis appears. Neuropathies appear. All starting a month to 3 months post-cessation of therapy. Not in all folks, but in some (and probably in a lot who don't make a connection, given timing of symptoms and their sub-clinical (mild) symptoms).
I think the brain might also be attacked in this phase. In other words, you may suffer inflammation of the brain, auto-immune induced. Just my theory, but I think it fits.
If you can, get counseling. You are going through grief and probably something similar to PTSD, given your powerlessness at the loss of yourself. You need to cry and grieve. You need comfort.
An anti-depressant will likely help, but they are full of their own problems. I take generic wellbutrin at a relatively low dose. It helps. It only helps. My GP prescribed Paxil at first. I filled the prescription, came home, read Med Help about it, and said "No way."
This may sound crazy, but a non-inflammatiory diet (such as one would use to combat arthritis and psoriasis) might make your mental state better. It seemed to me that when I ate inflammatory foods or food-like substances (bagels, pizza, factory meat, dairy, processed foods, snacks in a bag) on Tuesday, I would be worse on Wednesday. This is in large part a source for my theory above.
Food affects the mood.
Also, the careful eating is something you can DO, something that makes you feel a bit less powerless.
I have been through a number of hard things in my life. Recovery from the damage inflicted on brain and psyche by INF combo therapy was hands down the hardest, scariest loneliest of all. You think that "you" are utterly gone, and its so hard to take in.
If one hasn't been there, one has no idea.
Please take heart in that it will get better. It will take a couple / few years.
If you can, get reiki. I had a practitioner who sat with me for a half hour first, talked about how things were, then started her sessions with a powerful, solemn and ritualistic prayer. Reiki calls on the power of the universe to heal you. You need good energy to come inside your brain and drive out the taint of INF. Sounds woo-woo, but it helps. I will quietly suffer the derogation of further posters on this point should they choose to throw mud.
Read "Falling Upward" by Richard Rohr.
Finally, consider applying now for SSDI. It will be some time before a hearing. Get lined up with supportive doctors who understand what you are going through, as opposed to GIs and hepas who say "Well, I don't see that in my practice." Not all GIs and heaps are like that, but many are. A doctor who has given you a substance that has disabled you is disinclined to admit that he has given you a substance that has disabled you. The "in the trenches" counselors especially seem aware of the psyche damage from INF.
Here is a link to the only neurologist (Blaylock) I found who wrote on INF damage to nerves. Please note that he sells something - a nutritional supplement as a I recall (not at the below link, but at another I have seen and can't find now). Judge for yourself.
Hmmm, I was how you desrcibe above,, before my Tx, but more so after, tis true. I also now am having my hips pop out of joint when I stand up from bending over: there is a moment of excruciating pain, a popping sound, and the joint goes back in. Also, if I still still for more than 10 minutes, my legs stiffen up. I never had leg problems before my Tx, but I am still glad to have shaken my Hep C. I traded in eventual cirrhosis and liver failure, for stiff joints. I finished my 28 wks in the end of August. I suppose we should give it some more time~ good luck to you, and you may need to adjust yr Type A personality for a more casual and laid back "you".
All of this resonates with me at 2 months post EOT. I feel profoundly changed as a human being, and my close friends and family comment on it. Some of the change is positive: people say I am much softer and kinder and open about my feelings than before tx; my skin is now so clear and fine, strangers remark upon it; the roll of fat I had circling my upper abdomen is gone, as has the lichen planus on my legs. All very good. But, I am very sad, and deeply reclusive now, turning down all invitations except those from family. I can't bear noise and crowds anymore. I get every opportunistic infection going around and get them badly. I have headaches which I have not had since adolescence, blurred vision in one eye, and inflamed joints. Some of these things feel like the tx hastened my aging process. Others feel like responses to a kind of trauma. There's no doubt that interferon shakes things up. The only thing to do is take it slowly, try to get active again, be kind to yourself, and trust that these effects will fade as times passes.
You are not alone.
It does take time to recover from the very harsh tx. I know it took me at least 6 months to begin to feel better.
I was told that the Riba would stay in my system for 6 months. Give yourself time. I know how you feel about always looking for something, finding it, only to wonder why you needed it:). It does get better.
Rambledon had really good things to say.
I am now 10 months post and am feeling really good. I have regained a lot of my confidence. I did not want to be around people either. I think the tx shook my foundation and it took time for me to find the "me" in me.
My best to you
Thank you. The neuro article was very interesting. Thanks to all who replied - its nice to know others have come through on the other side of this. rambleon40 - You know EXACTLY what my life feels like right now. Thanks for sharing. Toni
It is true, I am also more reclusive, and avoid crowds, bright lights, loud noises, as someone above mentioned.
I just dont have the motivation to go out at night, so I think it is a social problem. I have been trying to practice, by jogging with my dog, at 9 pm, but again,this activity is dark, quiet, and reclusive~
I completed 24 weeks of triple tx w incivek on July 14th. I have been experiencing irritability to noise, even the sound being on the tv during commercials upsets me. I'm not myself. I have been going to zumba for the past 2 months & sometimes I start crying in the middle of class. I also got lost coming home from the gym. Its 1 1/2 miles from my house. I got lost in Kohls looking for the dressing room. I have been going there for 4 years. This getting lost thing just started a few weeks ago.
Good luck to you! Hoping all this will go away soon!
hello y'all- yes to this day the ripple effect of 2 times SOC TX is still impacting my life. I agree with some that there are positives: more compassion, less hurry, more quality of life even tho I am still infested.
There are still issues with getting back to a "normal" life.
My hearing is undependable, my joints ache and I too lost some mojo, as Dee mentioned. And my skin- argh- it gets so dry. Eyes not totally recovered, been 5 years. Tired, sleep issues, can't take drugs anymore, so roughing it out for now for the Liver health.
All in all I am slowly repairing and appreciating again, the depression seems to lifted and finally no more panic attacks. That is great. I am good enough to try to find solutions to the next 10 years of my life while living with hep c. Waiting on the cure!
One reason I don't get here as much as I'd like.
Happy new year (as possible) and let us know how it goes. Warriors, we are!
forgetting where i am while driving is quite a drag...it can cause some panic and happens to me often....but i'm still getting better as time moves on....it happens less then a few months ago.. everyday i do still deal with what coeric is talking about....i think another year and i'll be doing better..its been one year post tx so far and my sides left are chafing...skin itching...rashes..and short team memory...otherwise i'm way better......i still am not drinking enough water and i've been told by others with these troubles that drinking more water then you did before tx is really helpful...i'm thinking good cardio workouts with lots of water and sweating would be best for me its just the chafing thats getting in the way....never had that before tx...
It never ceases to amaze me that I tune in and find out I'm not alone. 10 months post tx and this past week I have had a great deal of difficulty being in large crowds and around loud people, both causing anxiety. I keep leaving situations, and I'm trying to explain why to the boyfriend, but how could I explain when I didn't understand myself?
my therapist is harping on exercise but that often just gets my panic going. And that's working out at home! I cant imagine walking into a class right now. I can NEVER even find my car - I tell myself where when I go in, but I walk around until I am in tears. You are not alone - so what it still ***** really bad. But I hope not being alone makes you feel better. I dont feel better because of the timeframe and I am sorry that all of you are going thru a hard time. What about work - Is anyone working? I can't - my job is professional and I can not perform. I tried to an embarrassing disaster. My manager doesnt want me in there like this and my disability is fighting me and denied my last approval. Which just makes my condition more panicked and I have cried since finding out 3 days ago because no coping skills is another little treat I get to experience. 2-3-5 years! I will have to change careers and maybe even husbands (just kidding.)
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