Chiari Online Support Group

Mood and behavior

#1

Hello all,
I am a survivor of decompression surgery for a year now. I am suffering from migraines still and have a new MRI coming up. I have noticed my personality is different. I sometimes think that it is all in my head but then my closest friends and family say things like, “remember how you used to be before surgery.” It is never in a positive light. I reviewed a posting on BBC news of how the cerebellar tonsils are part of what gives personality, moods like anger, fear, etc… I wonder if it needs to be treated as a behavioral issue. I do not know what to do the depression is only getting worse. I find myself wondering if I am even the same person, especially with my husband. I wonder if I am so different, that he may not love me in the same way as before. My job is difficult to it seems the busier my eyes the higher the chances of a migraine are.I want to be happy I just need to know what to do and if I am normal. at least Chiari normal.

#2

Hey Amanda,
Post neurosurgery I too fell in a hole, questioning everything, questioning me, which only added to my downward spiral. I needed help. I needed to ask for help. I spoke to my pcp who referred me to a counsellor. Things had changed and I needed assistance to deal with that change. Turns out my concerns were valid. We have been through some trauma, some MASSIVE trauma and it’s the type of trauma that 90% of the population really has no idea, no comprehension of. I’m not sure that I’d consider it a behavioural issue, but more a coping with major brain trauma.

Some people think that brain trauma is like any other bodily trauma. Give it 6-8 weeks and everything has heal, but that is not the way the brain heals. Dealing with that and managing it too is nothing like a 6-8 week recovery. Jeez for me it’s been 6yrs and still somethings aren’t ‘normal’.

Give yourself a break, ask your pcp for some assistance. Do not be trying to manage it all on your own anymore, it will only serve to stress you out even more. We all try to do it on our own and when we can, that’s great. But when we can’t we need to ask for assistance. I couldn’t see this for myself, it took my wife telling me that I wasn’t managing as well as I thought. I don’t like to admit it, but she was right (not that I’ll ever tell her that lol). Asking for professional help was the best thing I could have done at the time.

Merl from the Moderator Support Team

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#3

I know that I am out of control, but I don’t want to let my biggest supporter down. (hubby) Sometimes I feel off or bad and he says, its because you are thinking about it too much. I know that, that is a real thing like the late night hypochondriac who self diagnosis herself and it is all in her head. I am not wanting to make my husband feel like hes not helping but is or could he be right saying it is all in my head.

Thanks again for letting me vent.

#4

Coming at this from a migraine perspective – keep in mind Chairi headaches and migraines are two very different things that are often confused. Make sure you keep your doctor on the right path and that your foundational issue is Chiari. Treatment for Chiari headaches is often different than migraine treatment.

As for people saying “remember how you used to be before surgery…” well, you know what? you had brain surgery, you’re never going to be the same. In my opinion it’s not fair to compare then to now.

And you are not the same person, you’ve had trauma to the brain. Things have changed. Come to think of it, things change in general, especially over the span of a marriage! Neither you nor your husband are the same person you were when you got married, part of marriage is growing and changing together.

You’re normal – it might be your own personal normal, but it’s still normal. Don’t worry about what someone else considers normal! Think of what Dr. Seuss says: No one can be youer than you!

azurelle

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#5

As both Azurelle and I are Mods, I cant give her a +1, but I certainly would for her comments above, especially “…it’s not fair to compare then to now…” because it’s simply not.

I just love (not) that line “it is all in my head”. When I was given that line by a dr it was like, “Well, tell me the damn obvious why don’t you. I’ve had brain surgery, of course it’s in my head…” Things have changed, that is not only a psychological thing but a physical thing too. Looking at them as two separate issues is not fair on you. It is not a case of one or the other, they have a compounding effect, they add to each other. Separating them is like trying to separate hydrogen and oxygen out of water, you can’t.

Your hubby needs to be congratulated and thanked for the emotional support that he gives you, without that support recovery is 1000x harder. But psychological support often needs professional direction. For example, some people believe they are being ‘helpful’ by reminding us of ourselves prior to surgery, like ‘remember when…’ and sure some of those memories are nice. But when it only serves to remind us of what we used to be able to do, but now can’t, those reminders can be a real kick in the guts. Others often cannot comprehend this.

I do not know your hubby and because of that this may sound unfair, it is not my intent. But your hubby is a man. Us men and an ‘emotional’ understanding can be VERY foreign. Society places a social expectation on us. I use the saying ‘I man, I strong’ often, but this ignores ALL emotional content. We may be able to lift a heavy weight, but when it comes to an emotional weight we often have no clue. Society says “Be a man” or “Big boys don’t cry”, so we are conditioned to ignore or minimise such impacts and the idea that others cant or won’t ignore those impacts shows a weakness or a psychological issue. And this is WRONG. Often us males cannot comprehend this until it smacks us in the mouth. We think we could deal with it all, no matter what, but the reality of it all is monumentally different. Trying to educate others of this is a waste of time. This is not something that can be taught, it is only something that is learnt from experience, a personal lived experience.

We have all heard of IQ or intelligence quota but there is also EQ or emotional quota. Males often ignore EQ or minimise it, where females often rate higher on the EQ scale. Females have a clearer view of emotional needs and if you can see your needs, then asking for help shows an emotional maturity. It may be an idea to explain to hubby that by you talking to someone outside of you it will lessen the load for you both and not emotionally burden him further.

Merl from the Moderator Support Team

#6

It has been years since I have looked on this site and I think it is a great source for help, support and love. I think my Mood and Behavior has been affected by Chiari. It’s was in 2010 when I was diagnosed and have gone through many MRI’s and doctors visits that require me trying to explain how I feel and what level of pain from 1 to 10. I am extremely blessed that it has not progressed. After trying medications for pain, headaches, nerves, etc. I have learned to meditate and practice breathing. For me it was a decision that the medication side effects where more harmful physically and mentally than the symptoms of Chiari. I get headaches at the back of my head, hot head if it’s a thing, finding the right pillow (a fine tuned art) and sitting in a chair at work just the right way.
I am not recommending to anyone to do what I do. I do not dare comment on anyone or compare myself to someone who has progressed and has had surgery. With that said, I have learned to let the pain go by meditating or self hypnosis. Whatever you want to call it, it helps me get through the day and night. I have also have been taking vitamins and eating much healthier. When I am healthy I can better identify what my body is feeling. I have learned how different foods affect me. It’s tough to exercise hard as do some things like jumping or anything hard on my head can send shocks through my body.
So I guess my perspective about my mood and behavior is a conscious decision to not let it drive my life. It’s obvious it can drive us down so much of the time but each moment I gain for myself and others is what I focus on. Don’t forget your faith in GOD!

Jay

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#7

Did anyone have the mood swings, and anger issues before they had surgery. The neuro doctor said I wasn’t ready for the surgery just yet, but my road rage has gotten ALOT worse. And I find arguing with my husband is something that happens alot also. I don’t know if its me arguing and defending myself or is it him being discouraged because of me not being 100% healthy any more. Its driving me crazy. I have a 2 week old grandson and I wonder is my life going to be like this til I die. Also what do you all take to help with the headaches?

#8

Hey there im a decompression survivor of 2 years.I know all to well what you are experiencing I am slowly figuring all this out to.I was always highly motivated before my op with a happy positive attitude.I have depression and I can tell you it hasn’t been easy to get where I am I have some advice for you I found it incredibly useful to have a team of doctors looking after me I have a phycologist and one that many doctors wont tell you about a ‘‘Nuerophycologyst" I also see a phyciatrist as I noticed dramatic changes I just never felt the same.I am on regular medication which has helped significantly but I know what you are saying I honestly think normal is overated.I call this my “New norm” now its a lot! of adjusting I have found its like starting from scratch You slowely get to know the new you.I am still not comfortable with myself but I can tell you it has been 2 years for me and there has been "suttle’’ improvements in my cognitive abilities.Talk to your doctor about a ''Neurophysiological" assessment im actually going for mine on Monday it covers everything and that way you can determine whether behaviour changes have always been there or whether its bought on by chiari or decompression surgery.Apparently the test is very intensive for me they had to make sure my mental health was some what stable but I feel im now on the right track to figuring this chiari thing out haha.Take care hope you find answers! .

#9

Hi yes mood swings omg! I was so angry I attacked everyone its like your body knows something is wrong and it comes out as aggression I was very sleep deprived as I would hurl in my sleep from chiari and any noise I was agitated I needed quiet space and nobody could talk to me I just wasn’t tolerant and basically fought with family members a lot and I would cry a lot trying to push through and not being able to laugh with your friends really bothered me there were time where I would just drop to the ground in agony or my fiancé would try to hug me and my head just felt like it was gonna explode it really!!! sucks the joy out of life and can make you feel super aggressive I wasn’t aware I was doing this until my sister pointed it out.Weeks after surgery was the worst cause I had to have steroids and I was like a raging hulk I yelled at the man across the street using a leaf blower (he was just doing his job) I feel bad now I hope he can forgive me.But yes rage!!! omg it was so not like me at all.

#10

I’m so glad its not just me like this. This past weekend I was babysitting 3 kids for a friend. Ages are 2 months, 3 and 4 years old. The baby and 3 year old wasn’t a problem. The 4 year old has a small mental issue they are trying to figure out. So of course he doesn’t listen. Between him no listening, my dogs deciding to bark, my house isn’t really clean because headaches put me on the couch I litterly had a emotional breakdown. I cried all that night and Saturday night. Even though my husband kept saying everything was going to be ok I felt like a horrible friend and wife. I just lose it over stupid things like you said with the guy blowing leaves. I can feel my skin start to crawl. I really hate this. I went from being a perfectly healthy person to having CM1. The only reason I found out I had it was because of 2 CT scans. One said I had a mild stroke and the other said I was fine. So my insurance requested a MRI. Then to top it off I had the shingles at the same time. Its been a nightmare!!!

#11

well no wonder! you feel the way you do.Be kind to you your not a bad! anything Your body is pretty much in survival mode.Hypersensitivety happens cause your body is fighting to survive and keep you safe its that fight or flight instinct we have when there is actual danger.Try removing yourself from the situation a dark cool room a heavy doona and calm music helps me.I know its hard to say to family and friends ''im not well" ‘’ im not wanting noise around me right now".But honestly you need space and rest to heal family understand that and if they don’t well that is there issue.i just communicate to my fiancé I need a quiet day its not easy with children around most children if you clearly explain openly that you need quiet they are usually pretty understanding for maybe an hour or so haha if your lucky.I wouldn’t feel bad to remove yourself from situations that cause you stress pushing through makes it worse and I find people pick up that your not well and really are only there out of obligation.Its ok to say No thankyou.

#12

Also I went to visit a nuerophycologyst on Monday (really exuaghsting day mentally) but omg!!! the info and recourses I received was beyond helpful if your from Australia dr Gordon in Lismore nsw is the most wonderful lady so helpful! She gave me info about brain injury and how to cope and info for family members dealing with aggression and ways to cope and stuff It was extensive.If your not from Australia talk to your gp about a nuerophycologyst they do everything from cognitive,memory,behaviour etc.Also don’t worry bout messy house there is always! time to clean pick small tasks I fold washing on the couch when I am unwell but feel I might be able to do something.And ask for help believe me! you need it and don’t feel bad or guilty that doesn’t help you or anyone.Sleeping,resting and taking care of yourself that is how you help.Your worth is not based on what you do in a day.I have heard shingles really really suck haven’t had them before but heard its very painful take care! sending hugs.

#13

I have struggled with mood and behavior changes both before and after surgery. I have not always been proud of my behavior yet know at the same time that there was something wrong with my brain. “Truly, I am not a crazy person!” I would say to myself and to my husband.

I have found that oculomotor exercises did improve things considerably. I remember the time when something happened - combination of stressors and I did NOT have a “brain attack”. It was a pivotal moment in acknowledging that I was making progress with how my brain was functioning. As with others, I still find it very important to employ coping strategies in restricting external stimuli and stress.

I can relate to the stressors of a house of kids (I decline all babysitting requests!) and arguing with my husband for no sane reason - the poor man! They are definitely humbling experiences has I face my limitations.

I continue to work through brain injury/concussion rehabilitation therapies to stabilize and improve my brain function.

#14

Have either of you found a good food diet that has helped. I have been drinking alot of water and have noticed if I don’t get enough I’m really weak. Also when I drink Coke or Dr. Pepper I get a metal after taste. Does anyone else get that?

Thank y’all for responding. This has helped me alot. I get very discouraged with these headaches. I am actually from Arkansas but I will for sure look into the neurophycologyst. My memory is shot and its affecting my work. If I’m not working then I do not have insurance.

Also, I have started telling my husband when I don’t feel good that its a “lazy night.” Thankfully he gets it and helps out more. Like y’all I do try to do a little every day to help keep the house decently clean. Usually for me my mornings are a little better so I can pickup a little while getting ready for work. After work its like my brain knows and ready to shut down the minute I walk into the house…lol. I have found that with 3 pillows and sleeping on the couch propped up that helps with headaches also. Luckily my husband is nice and brings our mattress in the livingroom to sleep beside me.