Want to share my story and maybe get some more information from people who knows more about this than i do.

[Jules1986]

Hei everyone:)

I just wanted to share my story, and maybe get some answers to some of the questions i have.

I actually got diagnosed with chiari around two years ago. I had been in and out of the docters with various symptoms, headache, dizzyness, naucia, feeling tired.. But since my mum was diagnosed with Lupus many years ago, the docters thought that i probably had some similar disease, like sjogren, and i was tested for all similar diseases, without any luck in finding out what was actually wrong with me. They took a random MRI, and put in my jornal as a side note that i had chiari type 1-2. But no one ever talked to me or explained anything to me about it. I found out about it by a coincidence when my docter left my jornal on the table and I read "Chiari type 1-2", but when i asked him about it he said that chiari was probably not the reasons why i had been sick, and that most people don't even notice they have it, and i was probably the same. So I trusted what he said.

But then now over the last year my headaches have become more pressing. It's not so bad that i am unable to do anything, but it is in a way that i just feel sick, and get very easily annoyed over sounds. I have also felt alot more often dizzy, or lightheaded, almost like i have been drinking and i am a little tipsy. It's still not very often, but some days i notice it many times during the day. Also over the last 6-8 months I have noticed that when I get tired my muscles sometimes twitches, or they feel kind of uncomfortable in a way i can't explain.
I have always been an active girl, and I work out 4-5 times a week, both strenght training and cardio, but I have always joked about how week I am, even tho I work out and feel kind of strong, I couldn't lift a medium heavy box over my head to save my life. I have however noticed over some time now that when I work out now I often feel like my muscles are completly spent alot sooner than what it used to be.

So yesterday, for the first time I actually googled chiari, and all my symptoms are there! Everything that I have experienced. It even explained why when I was a little girl I used to get so bad neck and head pains from for example coloring in my book that i would throw up. Even why I sometimes all of a sudden see black spots in front of me for no reason. I always thought that my dizzyness and headaches was from maybe not eating enough or drinking enough, but no matter how much or little i ate and drank it didn't go away. I explains why I sometimes in the nights can't sleep because my legs feel restless and my muscles feel weird. It all ties in with Chiari.
And my docter said to me I was probably symptom free!

So now I have tried to read a bit more about it, but what worries me most is, will this get worse? Will it progress and get to the point that I will have so bad headaches that I need surgery?
And are there any tips to anything I can do already now to either get better?

I hope someone has time to answer me and talk to me a little about this, I don't really trust that talking with my docter will help any since he seemed to have very little knowledge about this, so I would really appreciate some help:)

[jacmurphy]

Hi.
My son has a lot of the symptoms you describe. He was diagnosed with chiari 18 months ago. He has that feeling tipsy one a lot!! .. but of course they say his symtpoms and chiari are not related.

I also found it interesting that your Dear Mother has Lupus. I was diagnosed with that last year.

Hope you get the answers you need :)

[selmaS]

  I think the biggest problem for us is knowing what is a symptom...since we have had this since birth, and we may have had symptoms all along and never knew they were symptoms....we adapted and compensated for how we felt if we did this or that....and the Drs all say u will not have symptoms or they will not start until u r of a certain age...that is all bunk...I know bcuz I have always had symptoms, but none of the Drs I have gone to, took me seriously.

  Keep pushing for answers
Glad to have u here, sorry for the reasons that bring u.

    "selma"

[Jules1986]

Thank you for you reply:)
I did see your post and I think I managed to write one back, but I'm a bit of a noob here, so I might have failed:p

My last MRI was the first one I took. I live in Norway, and as far as I know there are no specialists in chiari here. At least I haven't found any when I've googled for it, and from what I have gathered docters still don't know very much about chiari here. So I have actually never really been checked for anything, I just got the diagnose and was told it is nothing.

If it stays the way it is right now, then I will not need any surgery, because I can live and function very well with how it is now, but I'm worried that it might get worse. I want to call my docter and tell about all this and ask for more information, but I am worried he will ignore me, since he said it's nothing i will notice. But I guess I just have to go there and demand to be taken seriously and tell him to read up on it.

Anyway, it's nice to be a place where I can talk to people that know what it is:)
And I was looking through the post earlier about the unofficial symptoms thread, and I was like "OMG, I have that!" all the way:p So it's nice to feel that i'm a bit more normal here, and that forexample other people too suddenly forget what they are saying in the middle of a sentence :)

[selmaS]

  Hi and welcome to the Chiari forum.
(I sent u a welcome note and it went 2x's...that is a glitch, not a chiari thing..lol...)

First u will want to find a true chiari specialist and have a few more tests. When was ur last MRI?.....U could have had changes...but what u need to find out is, if u have a CSF obstruction and over crowding...u also want to know if u have a syrinx...too many drs only check the cervical spine for these, but many members have them in the thoracic and lumbar spine as well....plus in checking the lumbar spine u can rule out tethered cord.
http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186
U will see a big  difference once u get to the specialist.

Medical schools r teaching out dated info on chiari and that is what too many go by, they do not listen to their patients.

   There r activities u should avoid to help from triggering a flare of symptoms....and only a true chiari specialist could guide u as to if ur chiari is stable.http://www.medhelp.org/health_pages/Neurological%20Disorders/Activities-to-avoid-with-Chiari-and-Syringomyelia/show/986?cid=186

  Surgery does not fix or cure u.....it just helps slow progression and helps top restore CSF flow....and it does not always get rid of all the pain and symptoms.....

   "selma"

[Jules1986]

I don't know if it's relevant or not, but I forgot to say that I am 25 years old:)