Good morning everyone! I am new to the site here. I have just found out that I have a Chiari 1. I have had symptoms for years and just a few months ago they progressed (again) to a point where I am scared. I am now dealing with syncope. I have had several test done to find the cause and so far everything is coming back Benign findings. I was just wondering if anyone else has had to deal with syncope in leiu of their Chiari 1???
Thank you so much for replying everyone! :) I had never heard of dysautonomia before. It sounds very possible that this may be the answer I was looking for? I have had an echo and holter. Both benign findings. I just recently had a tilt table test performed. I did not have an episode during the exam but came very close. The nurse who did the exam seemed to think that I would probably not have the answers I was looking for. I am scheduled for a live eeg in feb. My neurologist is the one who ordered the tilt table and eeg. My family doctor seems to think I am having seizures. I am also waiting to hear from the Mayfield Chiari Institute... I am hoping that the neurosurgeon there will shed some light on my situation!
well i was definatly not unmedicated for 48 hours! :( i wasnt told that :( but i did skip taking my meclozine before the test? which seems to be helping with vertigo :) Thank God! I have been going to IU methodist hospital for help with my latest. I was so excited to get into his hospital, but i feel like i am falling through the cracks! My neuro even told me during my first visit... " you were born with chiari, lots of neurologists out there will give you surgery, im not one of them!" We need
i wish i was on the right path with my care. And i believe that the chiari institute will be my light at the end of the tunnel!
wonderwoman1006 said:
well i was definatly not unmedicated for 48 hours! :( i wasnt told that :( but i did skip taking my meclozine before the test? which seems to be helping with vertigo :) Thank God! I have been going to IU methodist hospital for help with my latest. I was so excited to get into his hospital, but i feel like i am falling through the cracks! My neuro even told me during my first visit... " you were born with chiari, lots of neurologists out there will give you surgery, im not one of them!" We need
wow. you are on topamax and cymbalta?? So am i....i had wondered if our preventative medications may be the actual cause of our sycope! may i askhow long you have been on these two meds together??
yea i had syncope after my 2nd decompression i now have postural orthostatic hypotension (my 2nd decompression put me through hell)
i found a way to control it so to speak with mine i got real light headed before i went down no matter where you are sit when you get that feeling also salt is ur friend i drink alot of gatorade to help with headaches and the salt in it helps alot with syncope another thing when i lose to much weight for dance i notice that that plays a huge number so dont lose to much weight good luck