I lost everything, including my mind it seems...now what???
I am now wishing I had never taken the 48 week treatment. 2 years later, I am a former shell of myself. I am now what I would term a recluse, pretty much. I get manic and clean the crap outta my home, I cry or can't get out of bed, I wish I were alone, I am too paranoid and anxious to go out regularly, I'm hanging on yet feel overly challenged with all this mental/emotional **** I no longer seem able to deal with. I keep it together for my kids, but it's gotten to the point my doc thinks I have bipolar II and she mentioned agoraphobia. I am so frusterated that I cannot seem to snap otu of this. I am in no shape to even work again, yet I used to run my own business on the side of working more than over full time managing an engineering office. Thoughts I've never had before haunt me. It has been over 2 years since I have maintain any normal sleep pattern and I just got fat again after treatment. I cannot get off my patio at the extreme, cannot concentrate enough to even read a book, which is so frusterating as I was once an avid reader. I get overwhelmed just going to the darn grocery store. WHAT HAS HAPPENED TO ME AND WHAT CAN I DO TO GET MY SANITY BACK??? I am only 42 and it feels like my life is over.
i'm sorry you are having so much trouble most of us don't have anything like this happen at all. I think you should continue to follow along with your doctor, they have great medications available for bi-polar condition out now. Mental conditions can appear in life as a result of stress and other issues and usually have nothing to do with HCV treatment.
Sorry all that happened to you. Perhaps you should see a psychiatrist because it sounds like there are issues they may be able to help with. I hope at least you were cured in spite of all the other problems which you attribute to antiviral therapy.
Just like sx when treating, with the majority of people finding treatment "doable," most recover and go on with their lives. Unfortunately that is not the case for a small percentage of people that treat. So sorry that you appear to be in that small group.
Here are a couple of threads discussing "Post-Interferon Syndrome." There will be similar threads at the bottom of each. You might find some of the folks still checking in. Try sending a pm to Frank and see if he has gotten any help for his issues:
You have my deepest concern for what you are feeling now. Psychiatric problems affect at least one out of five Americans in their lifetimes. There are 300 million Americans, so the rate of mental illness, or mood disorders, is extraordinarily high and this figure seems to be getting higher with each passing year. The reasons for this are varied -- there are just a lot of problems facing people now and no one is immune -- life can be extremely difficult. From what you are describing, it definitely sounds as if you are experiencing bi-polar disorder combined with certain phobias. I know -- I've suffered clinical depression my entire life, and on occasion I will have a manic period, or a panic attack. I know what it is like to either be afraid or have no desire whatwoever to leave your home. There really is no such thing as a "pure" mental illness and this is due to a lot of overlapping of different mental conditions. Sometimes psychiatrists have difficulty diagnosing a person properly because of symptoms that can fall in one or more categories. What is important for you -- and it is critical -- is that you seek the best psychiatric care that you possibly can. Work closely with your doctors. It can take time to find the right medications, or adequate thearpy that will work for you. There was a time, and not to long ago, where there was little help with people suffering mental illnesses. They were locked away, and the keys were throw out. It is not like that today -- great strides have been made in the science of human behavior. There are medications now that target several areas of the brain, that can give relief to numerous, and at time agonizing, symptoms.
You are not alone. Whether you know it or not, you have already taken the first step. You have talked about your issues on this forum -- that is great and you are to be commended. It is difficult sometimes to pour out your heart and soul because you may feel that you will be ridiculed. You won't here. You will find compassion, kindess, intelligence, knowledge, and acceptance. We all have suffered in our own ways before, during and after treatment. Many people on this forum suffer from other illnesses other than Hep C. It sounds like you are going through a type of crises right now and you need some extra help. Rememer, the squeeky wheel gets the attention.
As GSDgirl said, "Stuff happens and please do see a psychiatrist." Stomp your feet, yell and scream, but get the help you need. It is your life and you deserve the best!
That "Frank" here... and sorry to hear that we have to add another "one in a million" to the growing "impossibilities" here!
This use to be a much more hospitable forum for us impossible P.I.S. ("Post-Interferon Syndrome") members but suddenly a few shot down any who made wild claims of oddities outside the big pharma bible! Of course they had nothing to say when the Mayo Clinic decides that a group of us are suffering from P.I.S. and it cant be a small group for the Mayo to announce a syndrome now can it???
There was also a study that came out by a group in Australia that was posted a bit ago. I have been carrying that around to my docs - and again, odd that the ones that are first to post on here to the newbies that you are the odd one out in your complaints had nothing to say about that study.
That being said, I really sympathize with all you have written. There is a whole lot going on in your body. Try to take care of yourself the best you can, exercise when you can, even if you dont see any benefits... eat properly, try to get rest. I know what I am telling you is probably impossible but try. What keeps me going is my positive attitude. It takes a hella lot of energy to keep the smile going but it is the only way.
I am lucky that I do have docs that believe what I am telling them is the truth and that the treatment is a real mess on some of our bodies.
The member who posted about the Mayo defining the PIS syndrome said they were doing what my docs have been doing for me all this time - trying to make my life as normal as they can and that usually means take each symptom and medicate. It rarely works but I have very good docs that keep trying different things - even when they have to fight the insurance companies.
One very important thing that I have learned thru these many years is that you have to be your own best advocate. Dont just fall into the bipolar label because it might give you a pill that might help! It might cause much more harm, or it might help. You have to be very careful with psych meds. I and my psych discuss these meds and using them or not using them over many sessions. I also have a therapist who I trust and we talk over the meds as well. I personally would not use anti-depressants unless I was in an uncontrollable, suicidal situation. My psych defined most of my moods as being caused by my situation - meaning the treatment (I went thru 72 weeks) put me where I am and not specifically a chemical imbalance in my brain - if that makes sense?!?!?!?
Good luck with your journey in your new skin. I hope that you have an understanding family and also that you find the doctors that can help you experiment and make things as comfortable for you as possible.
I would suggest that you see a psychologist instead of a psychiatrist. Psychiatrists are MD's and generally prescribe drugs. I love them since they give me my ADD medicine, but to them drugs = answer to everything.
Psychologists on the other hand are not MD's and so cannot prescribe drugs. It's hard work but if you're willing to do it, you and probably talk your way out of this. Just remember that chemcials are thoughts and thoughs are chemicals. You didn't get this way in an eye blink and it likely won't be an eye blink to get out of it, but I'd try the "talking cure" long before I'd try the medication.
Find someone you're comfortable with and start working through your issues. Psychologiest have a whole non-drug aresnal to help you - not just chatting about your childhood. They can help you with behavior modification techniques and adaptive strategies. And the best part is that many work on a siliding scale. Don't be afraid to shop around to find someone you like AND can afford to go see as often as you need to.
I'm sorry to hear that you are still dealing with these things post tx. Except for the mania part, you described what I've been dealing with since my 4th week of tx. I had to stop working too because my job required me to scan through many legal documents to find inconsistencies, and I got to the point where I couldn't keep details in my head for more than a minute... especially if people were talking. It is sooooo frustrating! The fact that people can't see anything different in you doesn't help. I did find that if I make myself go out of the house and go to the store during non busy times, I felt better when I got home.
Please don't hesitate to go to mental health professionals to get help. Since I'm doing tx now, I'm just on ADs but if this keeps on after tx, I won't mind getting any help I can find. Living with a brain that isn't yours is the pits. I agree with lots of the above posts... especially the squeaky wheel one. MAKE THEM LISTEN TO YOU! Also write down everything before you go to the doctor so that when you get confused, you don't forget anything important.
I finished 48 weeks tx and cleared Feb 2009. I am grateful for that but I have changed and not for the better. I used to be sharp as a tack with a photographic memory. Now I can't remember what I ate for lunch. A previous avid reader and writer, now I can't concentrate. I was a go-getter and put myself through college as a single mother earning academic awards. Now I find it hard to give a damn. . .about anything.
This is not old age. No one can age that much in 2 years.
Wow, sounds like yu having a really bad time and I am sorry to hear that news. I also struggled a fair amount once treatment stopped (although not to the same extent as you) but now I am 16 months post eot and feeling pretty good ( I would definately say better than prior to treatment!) although I have had to do a fair amount of work to get here.
Have you checked up on a few important but often overlooked things such as thyroid, your hgb, vit D & B levels, selenium levels, general vitamins and minerals etc? Treatment leaves us severely depleted in many areas and unless we think to look at those areas and have tests etc done we may be sufferring more than we do.
I found I had to get on to a supplement regime to raise a few of my levels. I also found that I had developed a benzoid addiction due to the sleeping pills I had been taking during treatment. When I tried to stop I really though I had lost my mind, it was a very debillitating time and it took me about 9 months to get that sorted.
I guess what I am trying to ask is whether you have explored all other avenues of what might be causing your problems. I know from experience that there was so many things that I blamed on either the virus or the treatment of that have since been righted once I found the correct approach. Often the simplest changes can have the most profound effects.
Hopefully you can work through all this and get back your life back, better than before!!
I have read through all the post here and I must say there is a wealth of great, outstanding information and common sense. We all know that every body is different. On treatment, some people experience some symptoms, while others do not. After treatment, people bounce back to normal at differing rates. A few don't seem to bounce back. During treatment, we are taking powerful medications. These meds almost take us to the point of death, in some case, to cure us, and sometimes there is no cure. It stands to reason that there will be residual effects from these drugs that are more difficult for some to shake off than others. I'll tell you again -- yell and scream -- get attention for what you are suffering from. As another person mentioned, a complete physical would probably be the first course of action to rule out any deficiency, or some other physical illness. Talk to a psychologist, discuss medications, prepare for maybe a few months or more of psychotherapy. Don't rule out psychotropic drugs completely, because they can be life savers for some people, or at least enable them to function better. Try everything -- leave no stone unturned. Try yoga, try meditation -- try Eastern Medicine. There are many options available for you. The trick is, and the hardest part, is finding the source of your pain and agony. Dig in and start that journey. It may not be easy, but you've got to do it. Don't give up. You've got what it takes to do it.
I wish you the very best. I feel your pain and I know how hard it is. But, you are trying, and you will prevail, or show improvement, in the final analysis -- because you want to. Also, sometimes, and it is a zitch, but it takes time. We we hurt we want the pain to go away immediately, and sometimes it doesn't as quickly as we would like. I think we have all experienced that in life in some capacity or another.
Read your posting yesterday. I've just joined this site and tried to send you a response earlier, but don't think it went through. So we'll try again...
I went through a clinical trial about 5 years ago and after 6 months I basically lost my mind. Black-out rages where I didn't remember destroying things, intense paranoia, and then finally severe depression and a suicidal state. I went to a psychologist (my wife had been seeing one on the sly to try and figure out how to deal with me) and she had taken interferon herself. She was able to explain what the drug was doing to me, but wanted to help me deal with my "inner demons" which wasn't what I needed right then. So I figured, well, if drugs fluxed me up, maybe they could fix me. Got on an anti-depressant and was "cured" in about 2 weeks. Had to adjust the dosage down so I could stay awake, but it worked. I still take 10 milligrams daily just to stay smooth.
Something about the treatment has upset a chemical balance in your brain, and I think the only way to fix it is chemically. Anyway, it worked for me and I wish you the best of luck.
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