Author Topic: Woke up with worst headache a month ago...9 years post op trans lab  (Read 3519 times)


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I suffer from vestibular migraines and I know what triggers them, but on April 10, 2016, I woke up with the worst headache of my life. I thought it might have been a really bad migraine, and took my usual stuff with no relief. After a week I was in the ER, getting a headache cocktail and a CT scan (confused why no MRI) and sent home with better pain meds and prednisone and told to follow up with a neurologist ASAP. I read the CT scan myself, and it said I had a congenital cyst. I had never had one before so obviously there was nothing congenital.  Since it was only a CT scan, I called the House Ear Institute and spoke with a doctor on staff who confirmed there was no cyst, and followed up with the neurologist a couple of days after getting out of the ER. and the neurologist handed me some migraine pills and when I questioned the  findings and failed the balance test, said "fine, I will order an MRI." Later that day, Dr. House (who did my surgery) called to see how my appointment went and I was in tears, and he sent me an MRI order and said he agreed that this was no migraine, but he also felt it was not another acoustic neuroma. I also agreed. He wanted me to be seen at UCLA neurology. I ended up in the UCLA ER, and they did MRI, and MRA and told me to see a neurologist ASAP, and after 8 hours said they were going to let me go home.  They never gave me a diagnosis, and said to just take pain meds until I saw a neurologist.  I figured I would see one that week. ASAP meant June 23. I ended up getting an appointment at Cedars for May 23, and thought maybe I injured something in the base of my skull, or neck since that is where the pain is as well. So I made an appointment with an orthopedic and got an appointment today (next day...amazing!). I am wondering if there is any injury or something that over time could cause sudden onset of a severe headache radiating from the base of your skull. My vision and balance are completely messed up and I have severe nausea and dizziness. I basically have to hold my head up. My bloodwork seems to be fine, so there is no infection. I was running and doing 8 hours of dance prior to waking up with this headache, although I was tired a couple of days leading up to it. I had been working very hard regaining my balance in the past 6 months. After my surgery, I could not walk, and did 2 years of vestibular therapy, had 6 surgeries for falls, plus multiple broken bones. To get myself in the condition where I was running up to 5 miles a day and doing 8 hours of ballet a week was a huge accomplishment.  So when I failed basic balance tests, it killed me. Not to mention having a screaming headache, loosing my ability to drive (I have 3 kids), and being basically confined to bed, is making things very difficult. I want to know what possibly could be wrong.  Thanks!


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My Prayer goes to you! Hope your doctor and you find the root cause of the headache and get back to normal again.
08/18/2010, first vertigo episode and tinnitus, 9mm AN found in left ear. Wait and Watch.
1/20/2016,  AN increased to 13mm.
3/21/2016, Middle Fossa at House with Drs. Brackmann/Schwartz/Stefan. Entire tumor removed, no facial issues, hearing preserved, gradually regain balance through daily walks.


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All the best crazyjster1, Stay strong.