Chiari Online Support Group

Help! No one seems to have any answers!


#1

Help I feel like im going crazy im so anxious all the time Im grumpy,angry and sad and nobody seems to be helping me adress these issues.I dont know why I feel like this its litrally! Doing my head in and everytime I try to explain to the neuro that im strugglung emotionally they look for physical symptoms but not phycological.I feel hostile angry on edge I have panic attacks I cannot deal with normal human interaction.I need help not a blank stare.Is it normal for chiari patients to have outbursts of anger and irrational irritability also my thoughts are eating me alive can someone please explain.


#2

As far as I know it is a common concern not only among the Chiari population but anyone who has experienced a concern with the brain (MS, stroke, brain injury, concussion, dementia). I definitely experience those concerns though they have improved as time goes by after the surgery. I found that information on how to deal with a concussion was helpful in dealing with triggers (fatigue, light, noise, socializing, hard concentration of whatever sort). Moderation, energy planning, and resting before I hit the wall is essential for me to maintain a balance. This often means that I no longer do the same activities or amounts as before. There are many different ways to reduce stimuli.

Also, I have done much in terms of helping my brain to better process stimuli so that it does not have to work so hard and get tired so fast. I have done vision therapy, midline, primitive reflexes, auditory work, graded motor imagery, and motor control. Even regular walking, within fatigue levels, improves blood flow to the brain. Very important those fatigue level, as it spirals you done into crazy brain with irrational emotion leaking all over the place.

I use the example of a hurdler. Before Chiari symptoms emerged, I was a skilled hurdler - able to jump and run with ease. Now with Chiari, (surgery did help over all), I tend to plow through the hurdles or take a long way around - off the track at times. Previous exercises just sent me through the hurdles without showing me how to jump or without showing me a quicker route. The exercises I mentioned, help my brain in those areas so that it has more energy to focus on cognitive tasks - very simply put.

Perhaps a place that deals with retraining concussion/brain injured people would have better results. It is hard to argue that Chiari folk do not have a brain injury, albeit a slow-motion one.

Good luck in getting your head back on straight. I think mine is still a little crooked but is better managed now.


#3

Dear Brainsurgerychic,

I can relate to the 'hostile angry!" Before Chiari symptoms started to appear, I was the mot easy-going person. I was able to handle working overseas in 3rd-world countries, making a fool of myself while learning new cultre, and laugh at myself.

Then, Chiari’s happened. Since that - and still post-surgery, I have become VERY explosive. I react to irritations, loud noises, and any emotional change - in like .0001 seconds with a literal eruption. And, I can’t do a thing to stop it! Family and friends who knew me pre-Chiaris make fun of me. The mock my eruptions. Especially when I burst into loud laughter after a joke. That was when I actually started to realize something was different with me. I felt I was just being more “me.” I thought I was finally feeling emotions that had been suppressed all my life - like my whole brain had been compressed and the decompression surgery released me for the first time. I actually enjoy the emotional “WOW!s”

However, the irritability is, well, irritating. For me, the rage explosions have become quite costly. I have destroyed a car radio 5 years ago when my clumsiness couldn’t get it to work right. I’ve broken dishes, appliances, even a laptop computer! Threw it to the ground when my clumsy fingers couldn’t get it to work. I’ve told myself to STOP IT! But, it’s like I can’t help myself. :worried:

My neoro-doc did tell me that compulsive behavior is quite common with bain-injury victims. And, he did give me the choice; he would prescribe me Tegretol if I felt the eruptions were more than I could handle. I’ve tried to stay off Tegretol, 'cuz I think it’s a pretty strong medicine. But, that is an option, I guess. On days like - yesterday - after I destroyed my 5th umbrella and two phonebooks (when I couldn’t find a car stereo store) in heated rages, THEN I think “why didn’t I go on Tegretol?”

I am _trying_to take me emotions out on more benign things. Like pillows. I threw my vitamin box across the room last night rather than destroy an appliance. (had to spend 5 minutes picking vitamins up off the floor, tho) I know being irritable is irritating, but take some comfort in - you’re not alone!

BethR


#4

Hi Brainsurgerychick

You are right now the way I used to be. …
What I know is that a Chiari brain is always under trauma. we have a malformation which, even after decompression, is still malformed. The op removes bone to remove pressure. It does not push the malformed bit into the shape it should’ve been. Pre-op we have all the pressure consequint results to deal with. Post-op there is a great improvement in pressure, headaches etc, but unfortunately the symptoms from a brain with altered shape remain. When a brain is under trauma, the chemicals in the brain react to protect the brain and alert us to the trauma. A traumatized brain tires easily, also battles with the energy output of concentration, following long, tiresome discussions and many other tasks.

Post-op it should go better, but your brain will still experience many of it’s difficulties. It is up to us to recognize the triggers and take control before the outburst. Excuse yourself from a room, go into a calmer surrounding, put asside whatever you were trying to do - it can be done on another day or time etc. Make sure the people around you all know what you experience in certain situations, not to quarrel with you etc. Stick to short, calm conversatioins rather etc. Take a long bath with candles and aroma. Find happy things and places.

Lessen your responsibilities in order to reduce emotional pressure. Say know to whatever will cause an overload. Rest when your head feels tired etc.

All the Best
Flerrie