Chiari Online Support Group

Can I just complain about this :(


#1

Not sure I can trust my Dr's. & I am in a pickle, I am having a really hard time...not just run of the mill neck pain and head tightness...I mean its bad I am having so much trouble with my memory motor skills and speech it's like I feel like I could have a stroke ...luckily this is familiar symtoms and NOT a prelude to a stroke, reminds me of a time I experienced a thunder clap headache. ..the brain fog anxiety vision problems all kind of coming through the fog of chiari. ..I don't know why this is happening to me

I did start taking a new prescription meloxicam pre scribed by my nurse practicioner I have no idea all I know is this headache sucks

they don't think I should take pain meds I have been taken off ...and it's been replaced the anti immflamitory meloxicam. ..I don't know if it's working or not I don't do well with the ibuprofen bc I turn bright red it's hot burning face rash ...

I am just venting bc I am finally getting tired of no one in the medical feild listening to me I feel invisible


#2

Rebecca, I have been were u are at for 2 years I fault for someone to listen to me. I started going to a pain clinic. When I started see a doctor she listen to me and tyres to find me a doctor who would see me for my other problems. It was hard we were turned down by doctor after doctor. Then I even had a Nero tell me it was all in my head an I was fine but I never gave up. So after the 3rd Nero doctor I got one that listen to me and found something that looks like it’s wrong with me. My advice to you is if you think there is something wrong with you keep going to someone to they help find someone to help you. I did.


#3

Rebecca, is there someone in your family who helps advocate for you? Ask them to keep a journal of pain levels and symptoms for you to help you get the best care. Please also share this resource with your advocate: http://www.chiarisupport.org/page/finding-a-doctor