Sudden Personality Changes/No Impulse Control -Symptomatic of AVM?

My husband of 18 years has AVMs and is resistant to treatment or even following up with his neurology team. The brain stem AVM was discovered after an elective surgical procedure rendered him paralyzed in 2005. A bad reaction between anaesthetic and AVM made him temporarily lose all feeling from the waist down (for approx 4 weeks.) He still has numbness from time to time. In November of 2007 he completely went off the rails. Gambling compulsively, drinking excessively, using illegal and abusing legal drugs, multiple, simultaneous affairs. Lavish expenditures. I am wondering if anyone in this community has experienced a sudden lack of impulse control as a symptom of AVM? Clearly, my first reaction was to place myself and the children in therapy. ASAP. Then begin planning for divorce. However, I still can’t understand how a normal, middle class, devoted husband could go from a loving lifestyle one month to complete train wreck the next. Before I pursue a divorce, I would like to make sure that we’re not dealing with a huge problem with an organic origin. Any help is appreciated.

Hi. I’m so sorry for all that your family is going through. It sounds like your husband is terrified of becoming a vegetable or dying, so instead of facing the problem and going to the doctor, he’s going kind of bonkers. He obviously needs counselling as well as medical care. I think it was very wise of you to get yourself and the rest of the family into therapy right away. I’m sure others in the group can help you understand what’s going on as well.

Hi Connie, thanks for your kind words. Have you seen similar behavior AVM survivors? Have you heard of drastic personality changes happening so aggressively? Every symptom I have read about appears to be physiological ie; headaches, fainting. Just wondering if any one has experienced behavioral, mental or emotional changes?

Hi,
First thing I would have to ask is, has your husband ever had problems like this in the past? If not, then it could be a mental lapse or a fear of dying. Not to excuse his behavior, of course, because destructive behavior is never good. Drinking and illegal drugs could be deadly for him, especially with the AVM. Have you spoken with his Dr’s to see if one of the AVM’s could be in a place in his brain that could be causing the lack of self control? That may be one possibility. No one would like to admit this but yes, it did have a few moments of sudden lack of impulse control. It was shortly after my AVM ruptures (4 at once) and surgery. I still had massive amounts of blood on my brain. My boyfriend at the time and I were breaking up due to him not being able to handle the stress of my recovery and problems. He told me point blank to make it quick that he had been sleeping with other people, two of which I was very worried may have AIDS (wether it was true, I sometimes doubt now, but he knew that I would not want to be with him any longer). On the night he told me this and please remember that I am in no way a violent person, I loaded my shotgun, cocked it in my roomates face, said I was going to blow his head off and headed for his house!! Of course and much to his luck, he lived around 50 miles away! I got about 20 miles from home and went to my brothers house, unloaded the gun and told him to keep it for me and not to give it back until we were sure I was no longer a danger to anyone. I did not ask him for the gun back for over 5 years!! I never had an urge like that again THANK GOD!! The whole experience was very scarey for me!! I have had a few other instances of not being able to control myself but nothing like that ever again. The brain is a funny thing but so is almost dying. I cannot say for sure that mine was AVM related but I can tell you in normal circumstances I would have never thought of doing anything like what I did but none of us knows what we will do. I told my ex-boyfriend what my intentions were and gave my roomate the option of filing charges against me. Both of them told me that they never in a million years thought I would do anything like that. I put myself in therapy to discuss what i had done and why. I never could explain it. I have had compulsions since that I considered not in real control but never for more than a short time and nothing as destructive as what you are going through. I will say that if your husband does not have a history of this kind of behavior that a part of his brain that controls this kind of thing may be worth looking at but please do not put your or your children at risk for being hurt. God carries us through the hard times if we cannot walk ourselves. I would think that something so sudden in what sounds like a good family and home may have an underlying cause and please keep us up to date - we are here for you!!! The fact that you are searching for answers is a good thing and please know that you are not alone. I believe that I speak for everyone in this forum, we are praying and hoping for the best for you and your family. Take care.

Thanks Susan. I am working to schedule a follow up with his neurologist. I am grateful for your well wishes and prayers.

Well, I can olnly speak for myself. When I first found out, I wasn’t even sure if I’d live to see Christmas…I was so scared! I wrote letters to my children telling them how much I loved them. I told my husband where all the gifts were hidden and constantly told him how much I love him. I also tried to get in touch with every relative or friend I’d lost touch with and let them know I cared about them. I also cried at the drop of a hat, didn’t matter whether it was something happy or sad.

I did have on outburst…at Walmart, of all places. I was returning a camera that I’d bought my daughter for Christmas. It was damaged and they wouldn’t take it back. I went quite ballistic screaming at all the employees and yelling out to all the shoppers that they should shop elsewhere because Walmart didn’t stand behind their products. I guess I was pretty loud (even cursing - definitely not like me!), because they called security and threatened to have me physically removed from the store. What I was really upset about (and yelling to the poor salesman about) was that this was the last gift my daughter was ever goingto get from me and it was busted!

So yes, I had some behavioral changes, but they were mainly stress-related.

Thanks Connie.

Hi:

My husband has a brainstem AVM and before we found out what was going on, for a period of about 7 months he was having lots of lightheadedness and ultimately a loss of hearing. However during this period he also started having panic attacks that caused him to shut himself off from the world for awhile. (maybe about 12 to 14 weeks) SO his psychiatrist prescribed a series of meds. At one point he was on Xanax for a good while, then on some antidepressants as well. During that 12 to 14 week period he was very scared of doing anything or going anywhere. Mainly stayed close to home. Would go to the office for an hour or 2 then come home and just watch TV all day and stay in the room. When he finally got through that phase, the following 4 months or so he was not a very nice person. He became ugly and cruel. Most of the time he was just an agry person and unhappy. And I believe the Xanax would perpetuate or make his anger more intense. There were moments when I wondered whether the children & I would be safe. All I can say is the only thing that got me through was my faith in God. AS for Charlie when he finally lost hearing in his left ear he figured something was wrong. And so the road to discovery of the AVM was begun. They changed his meds and his real fear set in. I was pretty much ready to walk out before then. ( We’ve been married 17 years). He recommitted himself to God and we went allover the country to see the best neurosurgeons in the country. He was finally treated with Gamma Knife by Dr. Dade Lunsford at Univ. Of Pittsburgh Med Center. Charlie now tries to relax and take one day at a time and is grateful for every day of life God gives him with his kids and wife. ALthough there are vestiges of the fear behavior, it is much more manageable now. WHile I won’t dismiss your husband’s situation, sounds to me he’s trying to live it up with the notion that any day he’ll be gone. Let’s just say, unless he decides to go skydiving, bungee jumping, roller coaster riding, a big time body builder or a scuba diving fiend, he should be in pretty good shape. Charlie’s has never bled, so if your husband has not bled; then yes his chances are getting closer to the fact that he would bleed before he dies (maybe at 85 say) but the likelihood of him dying from a heart attack is probably greater than an AVM rupture especially if he’s not really symptomatic.
I will be interested to hear your story and if I can help with any more information I will happy to help out how I can. Take care, Nora Nichols

Thank you Liam, I am not hurt by your words at all. I am on the fence regarding divorce, but trust me–divorce was my first thought when I realized the extent of his betrayal. I too believe that we make choices in life. I did want to make certain that there wasn’t an underlying mental symptom of complete loss of impulse control in AVM patients that I was missing. From what I am hearing in this community–it does not appear to be the case.

Nora, thanks for your insight. It does sound like Charlie had some unexpected personality changes as well. I will keep you updated.

Hello Mlp, Welcome to AVM survivors. It sounds harsh what your husband did however this will test any ones marriage / relationship. I had my AVM removed last sept. 07 before that time I did suffer panic attacks …AND WENT SOME WHAT CRAZY. This was all before I knew about my AVM. I really believe that chemically the brain releases different chemicals that produce
different reactions in all of us. When one is dealing with an AVM and looking at life from a whole different view I know that my fear was making me think about things and people I haven’t thought about in a very long time. Please try to forgive your husband for this time in his life…believe me, if he wanted to leave you he would. He has nothing to loose. He already feels his life is over and he is just acting out of fear. Maybe he is doing this because he wants you to leave because he really doesn’t want to put you and your family through all this.I don’t know either of you to comment so much but I’m happy you have a theripist to talk to. Don’t take any physical abuse and please excuse the emotional out burst…it is scary as hell to go through this. I can only imagine how he must have felt loosing feeling from waist down.AVM survivors never are the same people! So hold on to each other…pray for guidence…and get his butt to the doc. That would be my condition for staying. Hange in there girl…it gets worse before it gets better.
ANGEL LIGHT AND LOVE FOR ALL OF YOU! ,…D

Donna thank you. My husband’s first AVM was found in 1999. Then a second one was found (both in the brain) during the follow up diagnostics. The 3rd one (the large one at the brain stem) was not discovered until his reaction to anaesthesia in 2005. He has never been a perfect person (who has!?) but he really just went crazy in November. It was like he snapped and became a different person altogether. He had always been so dismissive of adulterers, really had NO respect for them. Now he has become one of them, this is so out of character for the man I have known for 18 years. It’s like the ONE thing I knew I could rely on with him is that he was faithful.

I’m so sorry Mpl, I do know what it feels like to be betrayed like that and I couldn’t take it either. I have to tell you that chemical inbalance does happen with these AVM. Not trying to give him an excuse believe me! However, the brain and its make up does some amazing things. I asked my husband what he thought and he agrees with me. If your husband has never had a desire to do this before then it is so related to this AVM stuff and facing ones own mortality.If you can find it in you to forgive and try to trust again then you still will have a long journey . The choice is yours…it is all with what you can live with my friend. I so wish you well, and hope and pray you make the best decision for you! Life is to short to not to love life.Only you have the key to that door.
Best to both of you!..Be strong…d

Wow, MLp, this is sounds really bad. I am sorry you and your family are going through this! Whether this is an organic issue or not, it is clear that there are serious problems going on, and that exposing yourself and your kids to is not really an option. As far as the AVM is concerned, or any brain injury generally, this is what I know:
AVMs (as well as bleeds and brain damage from surgery, head injury, etc) DO cause some brain damage. In the case of any AVM, ruptured or otherwise, because there are no capillaries delivering oxygen to the surrounding tissue. The extent of the damage and the effects would largely depend on the location, size and his individual history. Surgeries and bleeds add to damage, and the results can be minimal (not even noticeable) to severe. Those kind of changes sound like what I have read about damage to the right frontal lobe, which can affect impulse control, and can cause pseudo-psycopathic behavior. What this means is that the person with the damage experiences increased feelings of happiness, regardless of what is going on, so everything can seem okay to them, no matter what it is, there can be a decrease or absence of remorse or conscience-type feelings. I would try looking up “brain damage” or “brain injury” in connection with the location of his brain that it affected with the AVM. Brain trauma can result in all kinds of dramatic and horrifying changes in people, sometimes completely obscuring the person who you once knew. I had a friend growing up who was a nice, smart and trustworthy guy, who was attacked by some kids with a baseball bat, and turned into a scheming, lying, thieving junkie pretty much overnight, who basically betrayed every friend he ever had. He was like that until he died. The old him was just gone. On the other hand, most of the people on this site, myself included, have not undergone any changes like this, and have only struggled with things like depression, anxiety and memory problems. The other possibility is a (really over the top) mid-life crisis type reaction to the illnesses he has had. I know that I have had some feelings like this (not in the same ways as him) where I felt acutely aware of my mortality, and wanted to do things that were more exciting, or less responsible (like drop out of school, become a singer and buy a motorcycle.) Severe depression could also cause the kind of self-destructive behavior you are taking about. I feel like all of these things sound like excuses, and it is not my intention to make any for him. It may, however, make you feel better able to understand why and how someone could go though such dramatic and hurtful changes. What ever the reason that this is happening, I assure you, it is NOT your fault. What ever you decide to do, you are right for wanting to take steps to protect and take care of yourself and your kids first. You know how the flight attendant on a plane says that you should first secure your own oxygen mask before attempting to assist others? The same rule applies to you. Whether you have the ability or will to help him, or even yourself, will depend on you protecting and caring for you first, because if you try to help him without securing your own needs for health, safety and survival first, you won’t be any help to anyone, and you put yourself in harms way in the process. My heart goes out to you, and I hope things get better soon. Take care,
Your friend,
Marilyn

Thanks Marilyn, this does help and supports some of the thoughts and research that I have had and done. As I mentioned to Liam, my first instinct was to immediately consult with a divorce lawyer which I have done. I have had fleeting thoughts of not feeling safe–and attribute that more to the whirlwind of destruction (this is beyond the self-destruction of mid life experimentation and is truly the total destruction of our family) then to his physical aggression (which he is not, thankfully.) I may feel worse about leaving someone who is sick, but am a fan of the “Oxygen Mask” theory. My heart goes out to my children and to a lesser extent–him.

Just as a side note, there are statistically significant differences among people with AVMs in reporting higher rates of attention deficit disorder and other impulse control related behavioral and learning disorders than the general population, but the evidence seems to be based on lifelong experiences, rather that a sudden onset. I definitely count myself as one of those people. I have done some things that are definitely “crazy”, and showed a lack of impulse control, but I never had a sudden personality change, or consistently out of control behavior.

Until the past 5 months, I would classify my husband as one of those “occasional crazies.” I would not be surprised if he has a learning disorder and he has indulged in risky behavior from time to time (impulse shopping is his big thing --I guess I should say “was” his big thing.) This last November it was like whatever barriers he had in place to protect him and us from his self-destruction were blasted away and he just became crazed with self-gratification. He started an addiction treatment program in January, but in my personal therapy and in the group therapy held at his treatment center–I have not heard a similar story from other family members. Then I wondered if perhaps this wasn’t just addiction, but addiction and a pre-existing condition?

The only thing I would add to any of the above is Charlie’s Neuro ENT told he and I that because his AVM was on the surface of the pons and rather diffuse, it appeared it was putting pressure on some of the cranial nerves, more specificlly, the 5th, 6th and 8th nerves. The 8th nerve typically deals with the hearing/auditory processing and equilibrium and balance issues. he said whenever, the brain cannot function as it is intended, and the equilibrium of an individual is affected through either pressure on the nerves or fluid buildup etc, he said the brain essentially frutrates itself because it is not registering information properly and when that happens the manifestation of erratic behavior is often the result. He said there was case history on stuff like this. So Someone mentioned dragging him to a doctor, I would agree. When you mentioned it was wrapped around the brainstem, Charlie’s also wraps around it to some degree as well. Don’t lose hope-- have faith and we’ll keep praying.
Nora

Thanks Nora. I will make the appointment. I pray that he will go.

Now that I think about it, I’ve gotten into a bad habit of on-line shopping. I know that part of me feels like “enjoy today, tomorrow may never come”. On the other hand, I my husband will be here to be stuck with the bill, so I definitely need to stop. Thank you for this eye-opener, MLP.