Chiari Online Support Group

I dont know how to cope


#1

I get so angry at everything, my head hurts, my chest is pounding, i cant think straight i cant remember hardly anything!! My sypmtoms started getting so much worse in the last week and its terrifying me. My wife and son dont understand why im being so unrational and angry all the time and i dont either which makes me angry in and of itself. This is the most horrible thing ive dealt with! I feel like im stuck in a nightmare and cant wake up, not to mention i got laid off 4 months ago and lost my health insurance and have medicaid which almost zero neurologists accept! Im on the verge of an emotional vreakdown and im a grown man that just wants to cry! I hate this!


#2

You have every right to angry. Don’t fight being angry, be angry. Be frustrated. Be upset. Just don’t take it out on your family as those are the people you’re going to need the most as you figure this all out. Be sure you keep your wife in the loop as to what’s going on in your head, let her know when you feel like you can’t control what comes out of your mouth.

I have neurologically complicated migraines and sometimes one of the symptoms is anger. Nothing specific, I just develop a hair trigger and am generally pissed off royally at the world. So I warn people up front that I’m very, very angry today and don’t talk to me unless you absolutely have to – it did wonders for my relationship not only with my coworkers, but my friends and family as well. People appreciate it honesty and forgive much when you tell them ahead of time you can’t keep your mouth shut.

Hang in there.

azurelle


#3

My wife is starting to understand that im not just making this stuff up, and we have had really good discussions as well as me and my 7 year old son. I tried explaining to him that my brain isnt working quite right and that sometimes i have feelings that its hard for me to control. He was really understanding and asked me if he could help me fix my brain. That right there is enough to give me stregnth to get through this. My family is starting to really understand, that they dont understand fully what im going through, if that makes sense… But they are supportive now, and are helping me deal with these sparatic emotions and forgetfullness. My son actually makes a point to get my shoes and keys and put them together so i dont wander the house for 45 minutes looking for them everyday which is how bad my memory has gotten. Hes a sweet kid and i refuse to give up and let this tear me apart anymore. Also you guys on here are a huge blessing. Strangers helping strangers going through something so difficult is a beautiful display of humanity. I dont know you all personally but i love you all for helping me and giving me advice during all of this. My life feels like its getting turned upside down but it feela good to know im not alone


#4

By no means what so ever am I a religious man, not at all in fact. But having that understanding of those around you is a MASSIVE blessing I can tell you that. My condition is not chiari, but it is a brain condition. The emotions and memory problems can be huge and such a rollercoaster. My memory and resourcefulness used to be one of my best qualities, but now if I don’t write things down, poof, they’re gone. My wife has become my diary “So what are the plans for today…?” I do not know how I would survive without the loving support of my wife. And her understanding of my reality has made the journey less torturous.
For myself, I have found this brain journey so defeating, like taking my skills and knowledge placing them in a jar and shaking the daylights out of them. Today I’ll remember things, but forget others. Then tomorrow I’ll forget the things I remembered today. It is all so foreign, confusing and damn annoying. Some people talk of acceptance, but I don’t want to accept ‘this’ and I fight against it. Then I simply become so exhausted. Pacing my daily activities is not what I know as normal but now I have too and that is so frustrating because I know it’s not what my ‘normal’ used to be.
I too have found that the Ben’s Friends network has been a ‘Phew, I’m not the only one…’ release, as many of our conditions can be so isolating. Having that understanding of others can be such a relief.

Merl from the Moderator Support Team


#5

I completely understand the memory issue your talking about. It frustrates me to the point of actually getting angry at myself because I literally feel like I’m losing IQ and becoming stupid which I used to be pretty Sharp and it’s even more noticeable especially when I was working because I used to be able to prioritize different activities at work and the last month I was there I caught myself standing around kind of in a fog I couldn’t concentrate on what needed to go first or where it needed to go etcetera


#6

Ahh, now, frustration… … ohh do I know about that. And the frustration with self… …I know that too. I fought against it, driving myself into the ground as a result. It was my wife who could see what was happening and sat me down and simply told me to STOP. Initially my theory was that I was building stamina to get back to work, when in reality I was frying myself. I couldn’t see it (Or I didn’t want to), the dr’s were telling me it was all in my head, they had fixed the issue. So on their advice I kept pushing and pushing, but as much as I pushed my body kept pushing back. My body was telling me ‘enough is enough’ but the dr’s were telling me I had a lack determination. So I set to prove them wrong. I had the will, but I didn’t have the ability and it took someone from outside of me, outside of the dr’s who could actually see the results on a daily basis to put a halt to it all. And she told me straight.
That loss of ability or acceptance of that loss was very hard for me to accept. And still today I battle against accepting it all. But the reality is that my ‘damn’ wife was/is correct, if I kept going the way I was, it was going to kill me. All those skills I had built up, that’d I’d made my life around were gone and as a male, as the ‘breadwinner’ that was very hard to accept. But in saying that, I have proven to myself, really have no choice in the matter.

Merl from the Moderator Support Team


#7

Yes, the hardest past for me is accepting that fact. Im still dealing with the denial. Ive kinda developed an typical “masculine ego” from working o. Drilling rigs and having to be the stereotypical macho man. But this experience is ever-so humbling. I cant return the the rigs because I know how dangerous it would be for me.


#8

When you learn how to FULLY accept, please tell me how :face_with_raised_eyebrow:
Some days that acceptance is easy but on other days it’s a battle. I was working with people with disabilities prior to my last incident and although my wish was to return to my job, I’m not only placing myself at risk but also the people I support and that would not be fair on anyone. In my role I thought I knew all about disability but this has given me a view I never wanted from the inside looking out and I do not like it one little bit. You say ‘humbling’ and that is an understatement from my view.

Merl from the Moderator Support Team


#9

well i just went and had an mri. the doctor told me i need to see a psychologist. that "there was overcrowding in my skull, but nothing that would cause my symptoms. Ive had 2 separate ct scans that indicated cerebellum tonsillar ectopia, but this dude is telling me im making it up? For real? Im at a loss here… He told me that im “stressed” and thats causing my symptoms… He also said that he thinks i “want brain surgery” i wanted to hit this dr in his mouth and walk out i was so upset… I just want to know whats going on in my upper neck and head thats causing all of this for me… also he called the radiologist and the one that looked at my mri wasnt there so he had another one glance over it which gave him his conclusion… … How do 2 drs tell yes and one tell me no…


#10

hey! im a female butttt I can tell you the “angry” I get it.Pain demands to be felt whether we like it or not sometimes we get so “use” to a certain pain that sometimes it comes out as “angry”.I had trouble communicating what I felt and it came out as aggression towards my family and spouse.Try to let your loved ones know by saying “hey im really not ok” remove yourself from the situation I know its impractical if you have children and life gets hectic by try doing a guided meditation when you feel your getting to that point of anger in a dark room with a nice warm heavy doona is very soothing and I found that you could even have family do it aswell you can get great meditation stories for little ones on youtube.Im from Australia but I to understand the financial struggle living with chiari it can leave you feeling helpless and depressed.My doctor prescribed fluoxetine for me and it really! helped a lot I think when they touch your brain it alters the chemical balance and its such a dramatic shift you end up thinking what the hell happened to me!.We have a program where you can get a ‘mental health plan’ and see a phycologist for free.Even if you don’t have a mental illness it really! helps to just get out what your feeling and talk to someone who isn’t emotionally involved Another thing that helped me is keeping everything very minimal stress free and simple and putting strategies in place when the brain fog hits.Also its hard I know but honestly when you are not feeling “ok” accept that it is “OK” to not be "ok’’ I have ocd,depression and chiari and im about 2 years post op it has deadest taken me 2 years of getting everything in check and feeling emotionally stable and I still have days of depression and ocd but my partner and I found that the best way to cope is to simply talk and if you feel something let it out feel what you feel but find a way so your family doesn’t cop the brunt of it.I am speaking from experience things said or done in anger/frustration are hard to take back.But deadest I was so against any medication but honestly it really does help and it clears your mind to get on top of coping its not going to get easier but you will get better at coping and please please please remember you are a human being and you are not alone in this.


#11

Also neurosurgeons can be difficult to deal with if your in pain of course! your gonna want brain surgery haha! when my head felt like exploding cause of this pain I didn’t even care if I would live or die I just wanted the pain to stop so bad.Sometimes nueros make me so mad they operate on brains but they don’t know how it actually feels its horrible its debilitating and condescending to me when they stare at me blanky and say “well I did surgery on you” your cured drs have a world of knowledge but the one thing I have found is that nobody really has a bloody clue what to do about chiari and what makes me even more angry is that they make you feel like a hypercondriac because they don’t know enough about it to understand.


#12

Even macho men are human beings.Dude if It makes you feel any better I saw a grown man crap himself and cry because he saw a mouse!!! Haha.It take a real man to admit that your struggling and we all do struggle even the people that pretend life is all peaches and cream.Your family obviously love you to pieces the first step forward is accepting and then removing your ego and allowing family to love,support and help you as you would do the same for them im sure.And even when you are unwell you add value simply by being present.We accept the love we believe we deserve.


#13

“…but this dude is telling me im making it up?..” That’s because we just LOVE being in agony. NOT. The medicos make out they know it all, but in reality, they don’t. They are still learning some of the intricacies of the human body and the brain and theories are always changing on just how it all works. Years ago the theory used to be that specific areas of the brain controlled certain parts of the body, but now that theory has changed and now they believe that areas within the brain interact with each other to create an outcome ie if you have an itch your hand doesn’t automatically scratch it. your brain interprets an itch and tells your hand where to scratch and how to scratch it. If the itch is in a sensitive area you don’t scratch it with the same force as a non sensitive area.
“…How do 2 drs tell yes and one tell me no…” I have had the misfortune to require multiple neurosurgeries. I have seen more dr’s than I can count on my fingers (and toes), each has their own opinions. Now, I say ‘opinions’ because how one dr interprets symptoms compared to another can be poles apart and as for stress, they seem to add to the stress, they seem to think we choose to be in this situation. NO ONE IN THEIR RIGHT MIND WOULD VOLUNTEER FOR SURGERY and it annoys the daylights out of me that any of this can be perceived as a choice.
Believe me when I say you most definitely are not the only one having to deal with these so called professionals and their vastly differing opinions, nor the debilitating pain. I have in the past tried to educate them on the realities of being ‘the patient’ but it is easier for them to treat us like a mechanic would treat a machine. They often seem so disconnected from the human side of our reality it’s insulting. It was explained to me that they need to maintain an emotion disconnection to do the job or they would become emotionally burnt out and this I can completely understand. But this is no simple walk in the park for us either and they need to understand that, often they don’t, unfortunately.

Merl from the Moderator Support Team


#14

Also I was the “bread winner” in my family I went from working and studying full time,riding my bike to and from work every day doing back to back PT with clients running a gym and then group classes as well as my own personal pt etc all without a car or licence lifting heavy weights and running/cycling for miles aswell as running a childcare facility and then chiari happened :face_with_raised_eyebrow:Omg! did my confidence drop I ask my self everyday were is my energy I feel so broken why? why? why? did this happen to me I miss the money I miss the feeling of being strong capable and in control of my own body and mind.But im not the same person so I don’t hold myself to the same standards I use to it is hard to adjust especially if you are so use to a certain mindset for example I was always thinking before my disease “pain in weakness leaving your body” WELL! I know now how silly that sounds because if your in pain your body is trying!!! to say ummmmm stop!!!.I cant do the things I use to and it does suck because It all happened when I was 23 im 25 this year and I have decided I have well and truly lost the old me but that’s exciting because I can recreate myself to my “new normal” there is one thing that I have come to relise and that is having the ability to SIMPLY LET GO what will be will be bad things happen that is just the reality of life but good things happen to focus on the good try not to stress about the bad because its beyond our control.And above all else get rid of the guilt ok don’t do it I spent years torturing myself feeling guilty for being unwell.I cant go back to my past and how I was back then I wish I could but I just cant all I can do is change my future and make it a great one despite the setbacks.I think you should totally watch the movie “inside out” I think you need to recreate your little islands try new things even if you don’t think you will like them or feel pessimistic about them It might give you a little confidence boost to give something else a go.Sterotypacially I should be a wonderful house wife truth is I hate it!!! and would rather be working butttt illness does that to you your often put in a situation you don’t want to be in.I started at uni that really helped its amazing! what you can do with a laptop haha!.Your grieving though so dont be to hard on yourself .


#15

Hi Vette 1811
I was diagnosed about 35 years ago.
I knew a lot of anger in my life, much difficulty to control it. In the end a person sits with guilt as you go from anger attack to anger attack. You end up hurting the people around you time and again. Yourself day to day.
To live with untreated CM is not the easiest, in fact it ruins your life.
You end up thinking you are a bad person for your anger etc.

The first thing we as chiarians have to understand is that we are experiencing brain trauma day after day. Your brain is being pressurized due to lack of space in your skull. This causes the brain chemicals to go haywire as they react to the trauma. With a Chiari brain the central nerve system of the body is affected. This affects all your bodily functions and your symptoms and problems depend on which area is taking the most pressure. You can experience extreme pressure in the top of the head, feeling like your head is about to pop. Then you also have the pressure at the back and where the tonsil pushes out of the skull and into the neck vertebra, causing the extreme pain in the back of the head.

You might find also that when you lie down on your pillow, your heart goes into overdrive. This is because you experience even worse pressure to the brain as you lie down, causing the heart to react to the trauma.

Many doctors and neuro’s have no idea of the effect of Chiari on a person’s life. You need to find people who have knowledge and experience with Chiari in order to get the correct treatment. To see a psychologist could help you tremendously to understand your emotional reactions and the effect on your body and brain better. You need that support all the way, especially in the beginning. This is a very invisible condition, unknown and misunderstood by those who do not live with it.
Check what your heart is doing, discuss with your general doctor and ask him to give you treatment to control and stabilise heart palputations. In my case I absolutely feared lying down to sleep as my heart went top speed. Since going onto meds for this it has made all the difference.

Further you would benefit hugely from meds to settle the brain chemicals as this could help control pain as well as depression. My neuro put me on Remeron for this which made a huge difference. My depression came under control and I could also stop taking painkillers. This is important as too many painpills, I was popping over 100 a month, was putting my kidneys in jeopardy.
Finally 7 years ago I had my decompression.
What a difference.
However, even after the operation, you still have to control the condition as the brain does not suddenly get a normal shape, it is still malformed and you still could have symptoms but for example not the extreme pressure. You might have no pain or pain from time to time etc. So even after the operation you might still benefit from meds controlling the brain chemicals etc, which is what is happening in my case. It is a way of life where you always have to take care, do not overload your program ever, control your life to counteract and prevent stress and over tiredness. Be aware what causes you to lose your temper and try manage it.

I for example battle to handle sudden changes, claims on my time which means pressure on my time etc. I will react first negatively before settling to it and managing the situation.

I will strike a blank if someone wants an answer to a question or I have to recall knowledge to answer a question on the spur of the moment. Half an hour later I will realize what the answer was etc.

Be kind to yourself. Know that the onset of Chiari life is not easy and it is a daily decision to remain calm and to keep your faculties together while meandering the path of finding the right people to give your the right treatment.
I am from South Africa. Here most people have never heard of this. You are the only one who knows your needs and will be able to manage your life to best suit your needs.
All the best
Flerrie


#16

Yes I to could not believe the difference medication made for me post op.I was decompressed but felt hostile,explosive angry working with a phycologist working out my triggers and finding strategies to manage my anxiety ocd and depression really helped I still have days of hopelessness and depression but what im most grateful for is I feel like my anger and explosive ness is finally under a level of control.After 2 years of wondering why I felt so emotionally challenged and not coping I finally feel free a lot less sensitive and rational.All because of medication,phycologysts.I knew in my mind when I had a very!!! explosive day that it was beyond my control as I would say horrible things in anger I did not mean and couldn’t explain why I was doing this I would say ‘’ I Need something to help’’ Its like your impulse control is majorly impaired like you don’t want to say horrible things but its like you black out and cant remember what or why you said it.


#17

Hi, @Vette1811! Believe it or not, but grown men can cry also! And it doesnt make them less of a man.
Its nice to hear your family is starting to understand. And I have to say, the understanding and support that lies in little children, it’s most powerful representatiin of human kindness. We are used to think that children “dont understand”, but then there comes a time we oirselves dont understand, and they show pure support. I had the same with my little sister. She was 6 and was a cheerful kid that wanted me to play with her. My head hurt bad every day and I would have to refuse every time she asked. When she got loud an I asked her to try to be more quiet, because of my head, she always listened and was very understanding.:slight_smile:

As for the doctors- thats another story. On paper, a tonsilar herniation doesnt mean almost anything. Mental problems are way more common that symptomatic Chiaro, so its logical that doctors will want to explore those, more easily treatable conditions, before popping your skull open. Because surgery truly is dangerous. What good can come from this for you? You might think, all that is just a waste of time. But its not. Chiari has its toll on persons mental health. Plus, the symptoms are common in other conditions. Every one who has had chiari surgery will tell you the same. The first thing doctors think- depression. Go treat that. But we know that the pulsing in the base of the skull, or the squishy sound, or passing out when you stretch isnt caused by a depression. Maybe we do have depression, because we have a condition noone takes serioisly and treats.

What can you do? Go to the battle prepared. Fight for your health, life and future, but build a strategy to follow. What is the fastest way of getting a neurologist considering your Chiar? You do what doctors ask of you. You go to the psycologist. You tell him/her about your symptoms, not leaving out squishy sounds in your head. I had to see a psychologist before I could get to a neuro. So I did it, and was lucky that she was understanding, and in the end, she said, even though I had depressive tendencies, the symptoms werent caused by psycological problems. Then I could finally move on.
The fastest way of getting to a neuro or a ns, is complying with all the seemingly stupid asks of the doctors you see.

How can you build the best startegy for the fight? Summarize wht you read here on how people get to their diagnoses. Go on youtube, there is a channel csf: chiari and syringomyelia foundation. Watch some of their lectures. There is valuable info there that you can use. Remember that there is a chance that it os something else, or there is chiari and something else that makes the chiari much worse. In that case you want to tackle the other thing fist. Who knows, maybe you get lucky and can even go without surgery. That would be a good thing.
And believe me, that is the fastest way. Sadly, there is no blood test that says: yout symptoms are caused by chiar! So the way it gets diagnosed, is to eliminate everything else.
To speed that up, you need to be reasonalbe and educated when interacting with doctors. If you let your emotions contol you, it might convince doctor even more that its just stress or just depression. Keep up a good image.

And finally, if you are having a bad day, you dont want to deal with all the bs, remember how understanding your son is, and go on youtube and listen to a Jocko Willink podcast.

Stay strong, be smart and good things will come.


#18

I understand and i can feel your heart when u speak nobody understand better than us here i cant work and im ashamed of not understanding or process ing anything and im tierd of hereare you stupid or deaf or something. Instructions must be given over and over and i dont ever get it like i cant give directions but i can drive to a place my mind doesnt process any dates or time half the time i dont no the date or what i did 3 days ago i miss appointments i have to write everything down im in a big fog alot.


#19

Find someone to do an EEG! I never knew till recently that Chiari do not always show up on MRI’s