Well I am very new here. I joined last night. I want this post to be very short because I’m not really sure if anyone will read it or respond. I have been taking Topamax for migraines, Lexapro for depression, and Xanax for when I can’t handle everything and need to calm down. I went to a “nurse practitioner” a few weeks ago. Her name was Dr. Perkins. When my dad was asking several questions regarding my CM, she got angry and told me that they would do anything to “appease” my family. I don’t want to be appeased…I want to be fixed. She then told me that it could just be anxiety and I may just need to talk to a counselor…as if I’m crazy… We told her Topamax was NOT working and she doubled my dose. My parents brought my MRI pictures i had gotten 2 weeks before and she proceeded to drop them on the floor. We won’t be seeing her anymore.
The past few nights I’ve been wondering if what she’s been saying is true. If maybe it’s all in my head and I just need to shut up and get over it. Because all it does is make my parents worry and makes my friends freak out.
Tayytayy… im sorry to hear about your experience… I am so angry for you!!
I know how you feel when people make you question/doubt yourself.
It is very true that depression, anxiety and stress can cause many symptoms that we chiarians have.
And I have doubted myself many times… only you know how you feel. And think it would be a good idea to see somebody who you feel comfortable with…
I spent the last year adjusting things in my life such as work stresses etc… and could not find a pattern linked with my symptoms that matched up.
I kept thinking… I feel down because I am unwell. And I am not unwell because I feel down.
I just wish there was a way to make us all feel validated about how we feel 
You know you have CM1… and that can come with an array of symptoms.
It helped me to be more confident and stand by my convictions by methodically investigating my individual symptoms… ruling out things, finding out things.
I hope you can get the strength you need from yourself, family and friends to trust yourself. And get a doctor who isnt insulting 
haha xx
Thank you very much for your response! I meet with a new neurosurgeon on Wednesday! So I’ll see how that goes! 
I guess they haven’t measured it so I don’t know the exact measurements. I have tingling in my hands and feet, my legs go numb sometimes, the sides of my right arm and my back are a little numb some days but I can still feel pressure. I see black spots, and one white square (that’s only happened a few times). I get extremely dizzy and extremely nauseous but I never throw up. I’ve had a tingling sensation starting from the back of my mouth going to all over my mouth a few times… I had an MRI about a month and a half or 2 months ago, and the noises from the machine set me off and made me freak out. Deep noises (my dads voice, low music, techno beats, etc) make my symptoms go crazy. I get really bad headaches and sometimes I hear a ringing in my left ear. I have vertigo like symptoms but not quite vertigo… It’s all very confusing and a lot to take in. I’ve never been a person of anxiety or depression. I’ve traveled, ran for school president, I can give full class presentations, I’m a singer, I can perform…so all of the sudden within the past few months I’ve been thinking I can’t do anything. I’m 16 and feel like I’m 70. And I don’t have any history of making up illnesses!
My parents wanted to! I go speak with an actual doctor on Wednesday!
razzle51 said:
no 1 I would call the office manager of where this Dr Perkins work and tell the manager how you were treated …then get another dr… what a jerk…
School is out now! But my teachers were very understanding with the exception of my chemistry teacher. She’s a little bit crazy and mean. My report card looks pretty great all A’s besides those two F’s! I’m thinking about just doing online schooling if I’m not feeling better by next year.
My mom and sister are nurses and they have a lot of connections to different doctors and they have pretty good knowledge of what to do when I’m not feeling well. So they really help me out more than anything.
The tornado on the 19th messed up my neighborhood pretty bad and I have to get a new roof. But the Moore tornado didn’t touch my house. Luckily all of my family and friends are ok. It’s really been a tragedy, but everyone in Oklahoma is really doing a great job of coming together and helping one another.Thank you for taking the time to read my discussion. It really does mean a lot! 
Mandy said:
Hi TayyTayy,
I am sorry you are being put through this, it’s tough enough to have Chiari, much less to have it at 16 years old and deal with people like that 
That is great you are seeing another doctor! If your parents want any additional information, this is a really great place for answers and support. I can only imagine how hard this is on all of you, it’s hard for parents to see their children in pain.
How are things at school? Are they understanding of your symptoms?
Also, our hearts go out to you and your community. I’m not sure how close these tornadoes have been to you, but it must be terrifying no matter where they hit.
Keeping you in my thoughts
Mandy
If you have a Chiari diagnosis seek relief in the fact that I was also told it was anxiety and they tried to treat me for depression. Do not let them minimize your symptoms. My last neurologist visit left me 10 step back. He said "6mm is not enough to be considered Chiari" AND "there are other people much worse iffvyhan you". Unbelievable! I haven't been back. Now my left are is partially numb and I have pins & needles across my shoulders & back. I have decided to get an appointment with the Denver Chiari Institute where they know what they are dealing with. My sisters daughter is being treated at Duke and she says they are the best (after 2 previous decomps). They now say tethered cord should fix her for good. There are good docs out there... Just be persistent and never let them make you think your crazy... it really us your head, not just all in your head.
Oh wow. That’s so rude of a doctor to say that to you… I’m sorry! I’m not sure on my measurements so hopefully my next MRI will tell me! I feel like my doctors aren’t trying very hard. But we’ll see how tomorrow goes with my new doctor! Thank you for your response!
pebbles said:
If you have a Chiari diagnosis seek relief in the fact that I was also told it was anxiety and they tried to treat me for depression. Do not let them minimize your symptoms. My last neurologist visit left me 10 step back. He said “6mm is not enough to be considered Chiari” AND “there are other people much worse iffvyhan you”. Unbelievable! I haven’t been back. Now my left are is partially numb and I have pins & needles across my shoulders & back. I have decided to get an appointment with the Denver Chiari Institute where they know what they are dealing with. My sisters daughter is being treated at Duke and she says they are the best (after 2 previous decomps). They now say tethered cord should fix her for good. There are good docs out there… Just be persistent and never let them make you think your crazy… it really us your head, not just all in your head.
Let us know how your appointment goes...if this doctor dismisses your symptoms then see another! Your symptoms are in line with Chiari and you deserve to be taken seriously!
Also sorry to hear you've had tornado damage! I can't imagine how scary it would be to have bad storms so close!
My doctor appointment went sooooo well! He was so understanding and believed every word I said! He actually scheduled a lot of other appointments for me! It went really well
Anglyn said:
Let us know how your appointment goes…if this doctor dismisses your symptoms then see another! Your symptoms are in line with Chiari and you deserve to be taken seriously!
Also sorry to hear you’ve had tornado damage! I can’t imagine how scary it would be to have bad storms so close!