I suffer with seizure like episodes. They started in August suddenly. I was at first diagnosed with complicated migraines. I’ve suffered with migraines for 8 years. After a second hospitalization in December I was diagnosed with ocular migraines. Now after requesting and reviewing my own medical records from all hospitals and doctors I’ve seen in the last 10 months and seeing that my MRI SCAN done in August showed a low lying cerebullar (spelling?) tonsil I did my own research. That’s how I found this website. I also suffer from vision loss, trouble breathing and vertigo. I lose my words. Trouble concentrating. It’s getting increasingly worse as time goes on. Any insight would be helpful
Unfortunatley Chiari is hard to diagnose, especially for people unfimiliar with it. Even moreso, because most of Chiari cases are asymptomatic. Many people go years undiagnosed or misdiagnosed. Sometimes it leaves us ourselves to put the dots together. I was living with it for years, I had the diagnosis, but the neurologist said, there was nothing that could be done. A year ago I got so bad, I strted researching it. At first noone took the Chiari very seriously. I had to go to a psychiatrist in order to be taken seriously, since everyone liked to think it was depression. Now, almost a year later, I have gotten the same diagnosis from a neurosurgeon and I'll be having surgery, hopefully this month. He said, I have been living like this way too long.
I hope your initiative will bring good results and you'll have found your answers.
Best wishes, Kristine.
Hi there, Queen of Hearts! Your appointment is coming up soon, isn't it? Who are you heading to to see? Don't forget to come back here and fill us in on what happens at the appointment.
Best of luck with everything
Seenie from Moderator Support
Hello. My daughter also suffers seuizers like espiodes. What are yours like if you dont mind telling. I have had 2 doctors tell me soo far that it has nothing to do with the Chiari and Chiari is nothing to worry about. Even had a ER doctor want to admit my 12yr for physic evaluation. Im soo frustrated with these doctors. We see a neurosurgeon on the 30th. I am hoping he will take me seriously. You will be in my thoughts!
Hi Everyone!
Thank you all so much for the messages of support. This has been a very depressing month. I've had to go on short term disability from my job due to the episodes and now severely disturbed vision. My vision is so badly blurred in and out that I can't keep working. I had an episode yesterday at my desk and my supervisor all but insisted that I take a leave of absence as this would be the 6th time an ambulance had been called to my place of employment for me. Ugh.
My appointment on the 7th had been canceled because I hadn't been told I would need my MRI discs but I got them and now I have an appointment for Wednesday the 22nd. I've been staring and comparing these MRI images for days lol
To Autumn: My episodes start with blurred vision, then I become dizzy. My eyes roll back and I lose control over my body but remain conscious about what's happening around me. I'm not able to speak until the episode is over. They last about 1-2 mins. I can remember everything that occurred during the episode but have some confusion and I'm not able to gather all of my thoughts immediately afterwards.