Hello

[sxsxsx]

Hello everyone, after over 10 years of strange symptoms I had a ct scans and then an MRI that confirmed I have CM1. I'm worried because I have dizzy spells daily through out the entire day (even when I eat). Does anyone else expierence this? I mean even when eating I feel the vertigo coming on. What the heck is that about? What can I do about the vertio? I told my neuro becaue the vertigo is what prompted me to go to the doctor to begin with and he said I shouldn't be having symptoms he gave me topamax and told me to come back in 2 months. Ok..... Is that true. Should I not be having symptoms?

[sxsxsx]

Thanks everyone for all of your wonderful answers. It's hard to talk to anyone about this because I feel like no one understands what I'm going through. I still haven't even told some of my family about what I'm going through because I feel like I have too many unanswered questions.I'm glad I found this page. I have been on the topamax for 6 weeks with almost no change.I have looked in to a neurosurgeon that has a speciality in CM but I want to follow through with the instrunctions of the neuro I am seeing now. I want to make sure I give him and his treatment a fair chance. I feel so much better now that I know that this crap is not all just in my head. lol well it's in my head but well you know... Thanks again everyone I will keep you all posted you are all a true blessing. Ya'll have made my day!

[cewilcox]

I started topamax two weeks ago. I have tried everything for my vertigo and migraines nothing has worked. I have not noticed a difference yet but it takes time for medicnes like this to build up in your system my doctor advised me to give it a month.I was recently diagnosed in januaryu but suffered with this since a child misdiagnosed with fibro. Hope this site will help you. It has me.

[jenshead]

As you read through these forums (and all over the internet for that matter), you'll notice that many doctors are not up to speed on recent CM research.  They may think your CM is not big enough or who knows.  So, yes, you can be having symptoms.  Drs know a lot, but you are the only one who knows how your body feels!  

My initial symptom was dizziness also.  I was bedridden until they got me on anti-nausea meds.  Antivert helped with the nausea and I eventually got used to the dizziness enough to walk mostly straight.  Then later I was prescribed Valium and that helped with the dizziness too.  Right now I'm on a low dose of Diamox which helped A LOT with the dizziness, nausea, and headaches.  

My dr office is very nice about medication changes between appointments.  You could try giving your dr's nurse a call and ask for something for the dizziness.  You might want to wait a little while so they know you at least gave the Topamax a shot.

Also, my dr sent me to vestibular rehab.  It may not fix the symptoms, but it teaches you how to better handle them during your daily activities.  You could ask about that, if you're interested.

[pamk5]

Hello and welcome!  No thats not true!  Some people go their whole life without having any symptoms but some dont.  I actually became symptomatic after a car accident.  There is a long list of symptoms that CM can cause and dizziness is one of them.  Are you having any other symptoms?  What I suggest is that you get your scans and find a neurosurgeon that specializes in Chiari.  There is a list here in the forum of docs other members have used and liked.  Their are other tests that need to be done and a CM specialist will be able to do those and let you know where you are with this disease.  

Alot of docs do believe that CM cant cause symptoms... I advise run dont walk  to someone who knows what they are talking about.  I had surgery 6 weeks ago and my brain stem was badly compressed.  I was told my several docs that it couldnt be making me sick... they were wrong.  I am so much better now.  

Welcome, I hope you find the support and information that you need here.

Pam