Chiari Online Support Group

I'm trying to understand this.. But I could use some help

#1

Hi, my name is Abbi. I’m only 13 years old, soon to be 14. I don’t even know where to begin. Well first I’ll say a bit about myself. I’ve grown up with a really diffucult family situation. My mom’s a drug addict and just got out of prison for the second time. I’ve lived with my dad and step mom for the last 5 years and she (my step mom) left right after Christmas. Well after it becoming my fault because I wasn’t willing to put myself through more and fight for a relationship with her, they finally got divorced. I’ve been stressed beyond belief. And as you can imagine, I am very mature beyond my years due to my childhood and life.

A few months ago I began getting frequent headaches which progressed into horrible headaches and dizzy spells. The doctor said it was vertigo and sent men on my way with Meclizine and a scheduled MRI. My MRI results came back with me having Chirari. They didn’t explain the severity or anything other than I have it. I have a doctor’s appointment with my family doctor in 3 days and I’m terrified to find out what it could bring. I have anxiety and I’ve truly been a mess. I am at the beach and the past 2 days I’ve been dizzy constantly and my head feels like it’s going to literally crack. Any advice? Thoughts? Anything to help me understand?

#2

Hey Abbi,
Welcome to Ben’s Friends. I completely understand your fears. Those concerns are normal, let’s face it we are talking about the brain and that is scary. The best advice I can give you is to wait until your family dr either explains the mri results to you or refers you onto a neurologist. We often get caught up in thinking too much and from my experience, that is never good. In the mean time try to keep yourself occupied, somehow. I may make that sound easy, but believe me I know it’s not. Managing symptoms is different for everyone, some people are lucky enough to manage using relaxation techniques and although such techniques did assist me I found I needed something else to occupy my thinking. I have a few tasks that I can vary throughout my day so that I’m not constantly thinking ‘Head’. If your dr’s recommend medication, take it, at the recommended dosage, at the recommended times. It may help to calm your overactive thoughts and stresses. It may also relieve your dizzy spells and pain. If it does not help then consult your dr’s. Don’t be taking more than is recommended because you think that may help. Doing so can cause what is known as ‘Rebound headaches’ where your body tells you it wants more meds, so don’t do that. Also, by taking more than is required, when you really do need them they don’t work as well. If you feel the need to laydown, do so, your body will give you signals and if you ignore those signals it can make things worse.

Family issues and stresses can make all of these things worse, but you have to look after you. Nobody else can feel your discomfort or pains and although others may not understand it all, only you can tell your levels of pain. So you have to manage that for yourself. There is no use in worrying about what the dr’s are going to say, you have no control over the dr’s. None of us do.
You have to manage all of this for you, not anybody else.

Merl from the Moderator support Team.

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#3

Hey Abbi,
Sounds like you’ve been through a lot but don’t let the bad things define you. (Easier said than done, I know :slight_smile: I was also diagnosed with Chiari and wasn’t able to see a doc for a couple weeks so that’s great you get to see them so soon. Try to trust the doctors but ask as many questions as possible. You’re an amazing person, hang on to hope! You can make it through this and look back with a smile. Praying for ya!

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#4

Thank you for your reply. I’m trying my best to put it out of my mind, even for short times but with constant pain, that’s proven to be near impossible. I plan to do everything exactly as my doctor says, I’m just really worried. My family (grandma, sister and dad) are trying to be strong for me, when really I feel like I have to be strong for them. I’m trying to not stress about it. It’s just hard.

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#5

Thank you so much for your reply. I’m trying my best to believe it’ll be okay. It’s just hard.

#6

Hard? The word hard just isn’t strong enough, but we are stronger. We can get through this, I’m proof of that. The human body is very resilient and being young, you have youth on your side, your body is still building new cells. Mine’s just recycling the old ones. Your mind is still flexible and can still learn new things, this is important. My mind… hmmmm… …best we don’t go there. Mines like old set concrete and if I can get through the battles, you can too.
Often the biggest battles are around thinking too much. If I sit down and really think about things too much, it drives me nuts. Sometimes the best way to look at things is to break them down. Into smaller bits. If I have a problem the first question is “what can I do about it?” In this case it’s medical Who knows medical? the dr’s. I go see a dr. You’ve already done that. Do as the dr’s tell you. There really truly is nothing else we, ourselves, can do. From here this is 100% out of your control. That can be scary (It was for me). I can be a bit of a control freak and if someone’s in control of me, then it’s me. But in this case I had no control. I had to hand it all that control over to the dr’s.
You have family around you who sound like they want to support you. Let them. They probably feel that there’s very little they can do either, and it’s true, they can’t. But let them support you because you will need them, maybe not today, heck, maybe not even tomorrow, but you will need them. Trying to manage all on your own, you will ‘burn out’ really quick. I know this because I tried to do it all myself. That was silly on my behalf. A stress shared is a stress halved. So talk to those around you.

And We know from our own personal experiences, not a textbook and we are here if you need.

Merl from the Moderator Support Team

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#7

Thank you so much. It helps hearing from someone who has gone through this. It makes it seem a little less scary. It’s still hard and I’m still scared to death, but knowing and hearing that you’ve made it through this, it gives me hope I couldn’t quite mister up before. Thank you.

#8

Hi Abbi - I wish you were mine - my son who is 16 years old has chiari and had decompression at your age - just be strong and do your homework on chiari and then stop - do not go reading everyone’s post as it starts to consume you and you start to think about it all time. Gather all the information you need and chat to your doctor. I am sending you my love and thoughts - it is a hard journey to do alone … do not give up

#9

Sounds like you have been given a lot of good advice so I will just say I am praying for you. I wish I could do more but that is the most helpful thing I can do for you. Remember, God is in control.

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#10

Hi
I just want to add YOU are NOT ALONE ! And YOU WILL BE OK… No one can Promise what your road wil be like… however You have others to support you here, I know how difficult it is to not have really any support at home. And im so sorry you have gone through so much already at your age. I FULLY Understand that.I was there myself…I will be Praying for you…ont know if you believe in Christ ,But if you do? Ask him to help you. GOD will help and he wont ever leave you…That last part I know for me,was THE MOST IMPORTANT PART !.. God be with you Sweetie…Thinnking of you NJ

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#11

So sorry it took so long for my reply. I’ve been a mess and have made myself stay off here for awhile. I appreciate your kindness, and I’m sorry your son is dealing with it too.

#12

Thank you. I know prayers can go a long way.

#13

Thank you so much for replying. I do believe in God, and I hate to admit it but lately it’s been harder to trust he’s there. I know in my heart he isn’t punishing me but I keep thinking about how it isn’t fair. I try to push the thoughts away. I really do. It’s just diffucult.

#14

Hey A.raine,
“…but I keep thinking about how it isn’t fair…” this scenario can be a real whirlpool which can really pull you down, well, it did to me. For many years I worked with people with disabilities and I know that, as bad as things are, they could be a hell of a lot worse. I can still walk, talk and use my limbs. Many of my former clients cannot and I have to be thankful that I still have the abilities that I do.

Merl from the Moderator Support Team

#15

I know. I know it’s wrong for me to think that way. I know I’m lucky. I know so much could be worse and I should be grateful. And I honestly believe after I have time to accept this, things will change. My attitude towards it will change. I really do believe so.

#16

By no means am I passing judgement and I do not believe your thinking is wrong, in fact, I think it is normal. I certainly went through a similar stage. I got what I call the ‘Poor me’s’ ie “Ohh poor me, why me…”
There is a process we go through known as the grieving process. Some people talk of acceptance and that acceptance is part of the process, but it’s near the end of the process. There are a few steps prior to acceptance and those steps can be a real battle (well, they were for me). Personally I tried to hide and ignore the reality of it all, which in hindsight was stupid, I actually made the whole process harder than it needed to be. But over time I eventually worked my way through and came out the other side (I’d like to think ‘a little wiser’).

So I do not think it’s wrong for you to think that way, not at all. What I am saying is that it’s all pretty damn normal and yes, eventually your attitude will change. I just had the experience of working with others who were/are in a much worse state than I to draw inspiration from and this assisted in altering my attitude.

Merl from the Moderator Support Team

#17

I can’t begin to tell you how very much I appreciate you replying and giving me advice, reassuring me that I’m not as crazy as I sometimes feel. Some days I just honestly have no idea who I am any more, thinking nobody understands me, and so much more. I hate it. But knowing it’s normal to have these problens at first at least makes me feel so much better

#18

Hi Abbi,
I know you posted awhile back. I was diagnosed with Chiari 10-11 months ago now. I’m sorry to hear you’ve had a difficult family situation, I too, had a difficult life situation at that age and even younger, I grew up earlier than I needed to. My father abused my mother and I, and my mother was a hard working single mother most of my life. You sound like a tough young woman, a wise and mature young woman, keep it up.
I know what the headaches and dizzy spells are like they are horrible, and I usually get migraines alongside them, and both sunlight and light in general make them worse, as well as bending, lifting, etc. I’m glad to hear you’re getting into a doctor so quickly! Many of us have not been that fortunate or even lucky. I’m going to my fourth neurosurgeon with my chiari diagnosis and over a dozen symptoms that I have that progressively worsen each month.

Make sure you write out any questions you have for the doctor, whether the questions are about your diagnosis, symptoms, treatment options, surgery, etc, always write out the questions you have, bring them with you, and ask them to your doctor. I was told by a few on here and another support group to type up my symptoms, if you want, type your symptoms up and describe them or explain them to the best of your ability, it does help the doctors. Be patient, be positive, believe in yourself, this journey of getting treatment and/or surgery if needed for Chiari and finding a doctor that can help you effectively can be stressful, emotionally hard, but you are strong and you will get through this. You have everyone here in this support group to help you, to vent if you need it or to have someone who will listen.

I utilize hot/cold packs that my mom bought. I will use the heating pad on my head when I have really bad headaches or extremely bad head pain, while it doesn’t get rid of the symptoms, it does take the edge of the pain, or I’ll sleep through it, and when I wake up the headache and head pain is a little less. Despite having so many symptoms, I run every other day, it keeps my weight maintained, helps me clear my head, helps me destress, and even though my symptoms flare up afterward, I feel stronger, I feel like I haven’t given up, and it just keeps me positive mentally.

Every time a new symptom starts, I type it to my symptom list and describe it. And it’s tough, but I try to manage my symptoms day to day, and work with them, being stuck home all day drives me batty in the best sense (lol). I’ve reached out to a Minister to help me find a neurosurgeon, I’m reaching out to professional contacts, and even though my support group is small, find a support group whether it’s here, one locally where you meet in person, or its a few close friends and a few family who understand. Support group is important, regardless of what form it comes in. Hope this helps! Always here if you need someone to talk to or someone to listen to.