Can Anyone Relate?

I have had a bleed, and I have had surgery to get my AVM removed, and I am in the clear now. However, it was a frightening experience and a very difficult time for me and everyone close to me as well. Ever since, I have had the problem of being angry more often. I definitely have felt anger towards the doctors who didn't treat me right, or the fact that I went to the hospital twice before I was rushed to the hospital. I went with seizures and I would have died had they not performed emergency embolization. I understand that anger, and I have worked through that and let it go for the most part. What I don't get is the anger in general. I get mad at a lot of people for a lot of things I shouldn't get mad at. For example, I work at a coffee shop. We get a lot of rude customers. I never used to get mad at them, annoyed would be a better word. But now, I picture myself fighting them, I feel much more pugnacious and just ready to fight all the time. I argue with people more often, people that I love and care about. It's like I seek out quarrels with people, it is very uncharacteristic of me. It was a very stark change that occurred during the time I went through all of this, which is what makes me think it is not a coincidence. A lot of people have tried to explain this to me, and I'm not sure if any of them are right. I have a hard time taking advice from people. I try to explain my situation to people and a lot of the response people give is them letting me know that they don't understand what I'm saying and can't empathize. I was just wondering if any of you have had similar experiences with anger after an ordeal like this?

Hi James. What you're experiencing is common amongst many survivors. It also can have a lot to do with the area of the brain the bleed was in. Many people experience differences in mood and personality in general. I would suggest you seek a therapist, counselor, etc. that has experience with dealing with people with brain injuries. A neuropsychiatrist could be particularly helpful if you can find one near you. Let us know how you are doing.

I too had an AVM rupture and while it is very frustrating at first after awhile you learn to adjust with help from medications and support from family and friends you will endure.

Hi James,
my son has the same issues. Please see neuropsychiatrist. It took us 10 years to realize it, do not wait.

HI James,
I did not experience a bleed & only under went GK surgery 12 months ago. I too have been experiencing anger all the time. I am like you & do not seek help. I am the one used to helping others. I can no longer stand the migraines & daily headaches I am experiencing and have been signed back off work. If I’m not angry & make stupid rash decisions lately… I’m crying all the time. I am now finally going to see a phsycologist to deal with all of this. I think for any of us getting the news… it is a lot to handle. Our family & friends just do not understand. I would encourage you to go talk to someone qualified to help you. We all I think are struggling with these issues.
Best of luck to you! Keep your head up! I’ll be praying for you.

I also suffered from significant anger issues after my AVM rupture/repair. Not that I got angry any more or less often, but my response to anger was/is epic. Most mornings, it a wonder I have not committed vehicular homicide on my way to work. With that being said, I finally conceded to my doctors request to try Wellbutrin, as I felt I was significantly depressed as well. It has made a huge improvement. I can't provide any encouragement on how long it will last, or when it will get better - but don't be reluctant to try meds. I feels good to be myself again. Good luck!

Hi, James:
I feel a lot of anger and I'll tell you why.
My AVM was in my spine. It took many, many years to diagnose.
By the time it was diagnosed, I had lost the ability to stand upright.
This was in 2008. At the time, the protocol was to try embolization first. My AVM was embolized. The next day I could stand on my own again.
However, the AVM came back 3 months later. This time I had surgery.
It is now six years later. I can do most things.
However, I am in constant pain. I have bladder and bowel dysfunction.
I try to count my blessings. Most people who lose their "anti-gravity" ability never regain it. I did. I was lucky. Thank you, Higher Power, for giving this back to me ... But ...
Often I wonder if it would have been better for me to be wheelchair bound. At least then I wasn't in pain. Now I hurt all the time. I'm angry about this.
Now, I understand, the protocol is not to try embolization at the T6 level--it has been proven to fail more often than not. The protocol is to go direct to surgery. I try not to be angry at my doctors--they were just following best practices at the time. Still, I torture myself with what ifs. What if I had surgery first ... would I be pain free or not? Who knows? Every AVM is different.
Worse, having an AVM is an "invisible disability". You look healthy. You look normal. People can't understand what you're enduring. They think you're shirking, making it up. This makes me angry, too.
However, anger gets you nowhere and can have a detrimental effect on your mental and physical health. Every day I try to find something for which to be grateful. It's hard. But I try.
At this point living is still better than dying for me, and I hope I never reach the tipping point where it isn't. If not, well maybe I'll move to Oregon.
May you find peace, hope, and healing.

I strongly agree with Trish's recommendation. My husband had an unruptured AVM removed six months ago and he has had a very hard time controlling his emotions. He flies into a rage at the littlest things. Things that a "normal" person would ignore or voice mild annoyance with, he throws fits over. My 10yo and I are at the point where we're afraid of him. I have finally realized that this won't go away on it's own, and am seeking professional services for him as well as us. It's very important that you get the anger under control, before you completely alienate your loved ones and friends, and lose your job. From what I've read, a therapist should be able to provide you with coping techniques to diffuse your rage, remove yourself from volatile situations, and there is also the option of medications. Good luck to you. I hope we both have positive outcomes.

Sounds all too familiar. I had a craniotomy almost 10 years ago and have been dealing with anger and depression ever since. Fortnately, it is not as bad as it once was, but it is still present. While I agree that it could be very beneficial to see a neuropsychologist, I would also recommend doing some homework, and by that, I don't mean look for answers online, I mean go get copies of your medical records, take notes of various medications that you may be prescribed and keep records of different physical and emotional symptoms that you notice.

To give you an example: I was told that I had part of my left temporal lobe removed during my surgery. As a result, everything I ever research revolved around the left temporal lobe, but much of it made no sense. So last year I went to the hospital where my surgery was performed and requested copies of all of my medical records. Upon reading through them I dicovered that not only was part of my temoral lobe removed, but also portions of my parietal lobe and hippocampus. After reading up on these areas, it made a LOT more sense why I was having the symptoms that I have been having. I immediately scheduled an appointment with my neurologist (whom I have been seeing yearly ever since my surgery), discussed my issues and concerns and he scheduled the first MRI that I'd had in over 8 years and started discussing alternate treatments.

Hello, James0207 -
Have you been prescribed any medication?

I also experienced these unpredictable changes in my mood and reaction to typical situations. I talked about it with my doctors and they attributed much of my unpredictability with a number of things. Primarily, medication, but also my having to deal with the "new me" every day. There is no way you can explain to anyone how you feel and what is happening or why and no way for me to explain to you that you just need to trust that you have BEEN THROUGH A LOT. Your BRAIN has been through a lot. How long has it been since your bleed? Your surgery?

I could go on for a long time on this topic, but I think it is best to just let you know I believe you are experiencing some very normal after-effects. It will take time. If you can appreciate or enjoy meditation or organized religion, those are two great outlets which offer you the peace you need to be able to reflect and come to terms with the new you. They have both helped me a great deal. My last bleed was in 2004. I had surgery in 1975 and was angry in varying degrees for many many years. Through the understanding of unyielding and devoted family I pushed beyond the anger and change. Thank goodness we are out of the dark ages and there are a multitude of therapies (acupuncture, herbalists, traditional meds and good ol' talk.) Reach out to a therapist by all means! Trish and the others have the right idea.

Best wishes to you. Keep reaching out - that's why we are here.

~Maria in Boston

Hi James, I had an AVM removed about 4 yrs ago from my left temporal lobe. I presented with seizures and I was told 6 weeks on so meds and I would be back to normalcy. However, I am still having seizures on a regular basis on 4 seizure meds, a couple antidepressants, and last year I had the VNS ( vagus nerve stimulator) implanted. So besides being misled I am continually losing more and more of my short term and intermediate memory. I am having trouble with my impulse control especially when agitated which happens pretty easily now. I think anytime something is digging around in your brain one tends to have a few emotional issues. One thing to remember, anger is a secondary emotion. People only get angry from either fear or hurt feelings. Knowing this may help to analyze why your feeling anger. I know it is easier said than done. Don’t feel like the Lone Ranger, all of us feel anger after our procedures. It is part of the five stages of grief. I still get pissed off about all of this sometimes. It is just part of the whole thing. Go get some help, it is nothing to be ashamed of. Nobody is taught the coping mechanisms for a serious life changing event. One thing that really gets me agitated is being in public or in a group of more than 4 people at a time, just to much stimuli. Find somebody that has had a like procedure to talk to, just having 1 person to talk to that understands what you are going through can be all the lifeline you need. Obviously you want help, so your on the right track, I hope you can figure it out, if not that is what this site is all about. Support! I am almost always awake and willing to help or just listen. Just find me on facebook if you want.

James, my AVM ruptured in 2004 , out of the blue. I was happy, still having fun, athletic, married with 2 great kids, calm, cool and collected. Then in December of 2004 my AVM ruptures. For 2 complete years I couldn’t do anything for myself. Yes, I was mad. I was mad that I went from being able to do what and when I wanted to not driving, not even able to cut up my own food. After time I was able to calm down and try to control my temper. My wife says instill sometimes have an attitude but not half as bad as it used to be. My AVM is still active inside my brain, unable to be operated on, to risky for embolization and the radio static therapy that was to shrink, kill and obliterate it within a year. It has been 10 years and the AVM is still the same size. I’m at the point of not knowing what to do now. I have headaches every day. Some days they are bad and some days they are horrendous. I have come to enjoy the bad days. Some days I get these headaches that feel like the worst brain freeze you can ever have. Then sometimes it feels and sounds like a rifle goes off inside my head. Those make me stop whatever I’m doing, because sometimes it makes me hit my knees and I get sick. I never know when any of these are going to happen or how long they are going to last. So when I think that I am getting my anger under control, these come along and ruin my days, because I ususally have to go lay down to get them to go away. These may happen once to five or ten times a day, so my anger is coming back and I hate it, because it usually comes out on my loved ones, even though I try to stay away from them as much as possible, that is hard, because I Love them so much. So, it’s a rough ride every day, but we are making it happen. Good luck with your anger issues, and I hope you well on your recovery.

Hi James,
Let me explain what I know about the anger issues and the tears. I don't know if you have the tears, but the anger and tears sometimes come together.
We have gone thru brain surgery and the melatonin and the seratonin in our brains gets nmessed with and it doesn't like it. When we get the chemical imbalances that's when we get the anger issues.
I am not one for pushing the meds, but once I got on an antidepressant, those feelings went away. THANK GOD!!! I thought I was going to have to kill someone. LOL
My doc noticed it right away and tried me on a couple different meds and I've been great ever since. It is trial and error until they found the right medication for me.
I've been great ever since. Talk to your doctor and see what he/she can do for you.

James- I agree with seeing a neuropsych doc. I have not seen one yet, but have experienced the same issues with anger. I found books written by Dr. Daniel Amen to be extremely helpful. And some issues can be more easily resolved with amino acids. Look into his books and maybe perhaps, go see him. Brain chemistry and anatomy can change as a result of the AVM or treatment.
I have started a regimen of a few amino acids and have found them to be very helpful.

I don’t often notice this blog. But today this topic made me to interact with you all. I’m spinal avm survivor. I have also gone through anger after the attack of avm. I often got angry on my family but now after three yeats of my injury I have got control on my anger. It’s all about how you balance yourself mentally. If you keep yourself calm and relaxed, you can never get angry.

I had a rupture back in April of this year, followed with a stroke and aneurism. I have been told that my attitude has changed for the worst, but I feel that because of my use of cannabis daily before my bleed I let a lot of things go. Now after two operations I have been told to use meds to control my anger and moods, but I refuse to walk around like a zombie and not feel anything, so I chose JESUS!!! I cant tell you how GREAT it feels to have a REAL relationship with HIM. I am not talking religion I am talking RELATIONSHIP! I know some people feel that I'm tripping but it WORKS try HIM first and for yourself...

Hi James! So glad that you joined this group. I very much agree with Trish. After my brain surgery I had so many emotions that I thought I was going crazy! I was very angry, irritable, depressed, and in pain. I was even paranoid. Please see your MD, neuropsychiatrist who can help you with this. You are not alone. Have a lot of rest, try relaxation techniques. The fact that you are recognizing these emotions is a good step to recovery. Take care and God Bless.

YES! I can relate as after returning to work from my operation I found it hard to keep things to myself i usually would. For example if i hated something you did I would keep it to myself if it was not my place to say anything, however when i had my operation if someone said something wrong to me or something i didnt agree with i would openly say exactly what i thought without any care..i did this to my boss and i think i got a pass only because of my situation...

After near death experience I think we uncontrollably speak our mind out loud and get angry at stupid time goes on you will get much better and i feel talking about it will help...God bless

Thank God someone has finally written about this, my anger has caused a huge rift between myself and my mother in law. She "saw a program about AVMs’ and does not believe what we live with and cannot forgive or forget about one of my outbursts! At last some people who live with it everyday finally understand. You have given me hope that things that happen are for a reason, she has since shown herself to be against anyone her son would marry without them having to cope with a AVM or not. So my wonderful husband and I are happy despite her! Love to all with AVMs and their families
Pauline and hubby Matt x x x x x x x s

Thanks! Yeah I hadn't even thought about the fact that it may be due to swelling or something. I made an appointment with my neuro-psych guy. That's helpful