Hi Chiari Support Forums .
I have been having symptoms since I was young . I am 26 now , and my symptoms are getting worse . it is because of this I wanted to join these forums to see if this sounds familiar to anyone .
I have some other conditions including (now dormant for 15 years) epilepsy, and Ehlers Danlos Syndrome.
When I was 10 or 11 my mom noticed gait issues and this was when I had an MRI that noticed a syrinx in my mid spike. The syrinx is about 5 mm long.
Since I was 16 I then noticed very mild ringing in my right ear, and episodes of dizziness… both symptoms would quickly go away if I lied down. I had hearing tests done and my hearing was perfect… so they ruled out hearing loss as cause.
Then in 2013 I developed fast heart rate that would come out of nowhere. I had to be put on verapamil to slow my heart rate down. My ECG’s were irregular, I had an ultrasound of my heart, nothing wrong with the heart itself could be found.
The ringing in my ears got worse, and new noises overlapping each other appeared. I also noticed I had less energy than before which made doctors suspect a thyroid problem or vitamin deficiency. Those came back normal as well.
Then in 2018 I developed two new symptoms - muscle twitches and headaches. The headaches would come out of the blue and would be a sudden sharp pain towards the back of my head or crown of my head , and the pain could be so bad it’d put me into a daze even though the pain would last a few seconds. This got more often, now I have headaches every day and muscle twitches nearly all day. The muscle twitches are all over my body including eyelids and face, and feel like bugs under my skin, or electric shocks. These tend to come back at noon or in the afternoon and seem to appear at a similar time of the headaches.
The ringing in my ear is very very bad now , I also am getting fluid building up behind my eardrum, and sometimes water just pours out of my nose. Bending down causes pressure feeling in my eyes and head and when I stand up straight I feel very dizzy. I also get dizzy and back pain if I bend my head forward. Not sure if that is related to the syrinx or not.
Only things that improve symptoms are lying down and overhydration. If I lie down flat for about 15 hours and I wake up in the morning in bed the ringing will be gone but shortly after I get up it’ll start to come back again. It can go from a 0 to a 10.
I am also now having trouble doing even simple hands on work, and I am forgetting everything constantly. my family tell me it’s similar to my grandmother’s mother when she had dementia. this is concerning me as well as it is also getting worse. If I have been upright for too long I start to fumble with my words.
I had an MRI in 2018 (lying down, no contrast) and my neurologist said it was normal. She gave me migraine pills which made my symptoms 3x worse so I had to stop them.
I had another MRI two weeks ago, without contrast again. This time the MRI was after I’d been upright for 24+ hours so my ear was ringing loud, I was having hundreds of jerks and twitches, feeling sick, headache, etc. still waiting for results.
just trying to make sense of what is happening here. Can you have chiari even though the MRI looks normal? When I was younger ‘chiari’ was mentioned after the syrinx was found but nothing of it was mentioned again.
