In 30s, Sudden onset of symptoms leading to diagnosis

Hi all. I’m new here as I was only diagnosed last week. I have read a number of your stories, and I’m so sorry for what some of you have gone through.

It is strange for me to read in part because my experience seems abnormal, and I am wondering if anyone experienced something similar.

I am 32 and out of no where had a sudden onset of severe symptoms.

I developed a bump on my head a few weeks ago (not trauma related). It was asymptomatic until last week when I suddenly started to have intense pressure headaches. They were so terrible that only one day after having them I felt the need to go to the ER for the first time in my life. It was there that I had a CT scan and MRI and was diagnosed with Chiari.

I still do not have a firm grasp on my diagnosis because I was only seen in the ER (I have followups with a neurologist and neurosurgeons in the coming weeks), but I was curious if anyone had experienced something similar. Thank you and wish you all well.

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Hi, @kaykay1

Welcome to our community! I see that you got to posting before I could even introduce you!
Pressure headaches must have been a doozy to experience out of thin air. I would say that a few of the stories I have read have had a similar sudden onset of symptoms. However, I think the bump on your head is fairly abnormal. Most people are diagnosed (From an MRI) but get one due to the symptoms, but there is not usually the bump as a warning. At least no one has written about one in my experience. However, I am relatively new to this and I do not have Chiari myself. Our members would have a better answer for you. I am sure you have figured this out, but you can use our search bar to search keywords like “Sudden” That may help!

Let me know if you need anything or have questions,
Jakob
He/His

Hi Katie! I just read your post so thought I would respond. I did not ever have a bump on my head but I was about your age when I started having symptoms (I’m 50 now). I have had frequent headaches throughout my life (runs in my family) but they were just “normal”headaches in my forehead area. In my early 30’s are started having very bad pain in the base of my skull/top of my neck. I also have scoliosis so I went to my spine dr and he just attributed the pain to my scoliosis. I tried to explain this wasn’t like any pain I’d ever had. I describe it as an icepick digging right in the base of my skull while a vice tightens on my vertebrae. He just felt it was degeneration and who was I to argue? He ordered me a cervical collar and traction (counter indicated for Chiari). He even ordered an mri but I was never told anything about chiari. (I know now to always get a copy of test results - frequently info is left out or minimized when the dr relays your results). I went back several times and he prescribed muscle relaxers and pain medicine as needed. My pain flares were not nearly as frequent then so I just moved forward the best I could. Fast forward maybe 15 years, my pain was much more frequent and debilitating when it occurred. My pain dr ordered an mri and that was when my diagnosis was made. Once I knew and researched Chiari, it all sounded so familiar. I had many symptoms and I never knew what to attribute them too. I was grateful to finally have an explanation. I can better advocate for myself both with drs and with research (and places like this where you can learn from other people’s experiences). Knowledge is power! I hope you get some more answers soon and pray your symptoms remain at a manageable level. Take care!