I am new to the group. I have an AVM in my right frontal cortex. I did the Gamma Knife in May of 2024. I have had a headache every single day since then. Some days I feel so defeated. My neurosurgeon basically told me that the headaches are not his problem. Am I the only one who experiences these headaches? They are so awful. I do have a neurologist and we have tried about 20 different meds. Most make me tired - I am already tired and I don’t need any help in that department. Headaches started immediately after GK and I see no end in sight. Am I alone in this?
Firstly, welcome! I hope our collective experience here can be of some help. I had gamma knife back in 2016, and did experience some ice pick headaches and swelling around the 6 month mark, but very unlike what you are describing. Generally most cases seem associated to swelling. Although our AVMs aside, dehydration is a huge contributing factor in many cases. I wish I had more to offer, but I’m confident others will join in. Take Care, John.
Sorry I missed this last year. I experienced headaches on and off for 30 years. Usually they came at around this time of the year after being cooped up in cold weather and dry air. I had written them off to sinus headaches and treated them that way.
Twenty five years later they discovered my AVM. I have no idea if the headaches were a result of my AVM or not. When the headaches reoccured five years ago, the neurologist prescribed Prochlorperazine (reading it off the label). Every time I feel a severe headache coming on, I pop a pill and it never seems to reach the intensity that I was used to and goes away. In five years, I still have some of the 30 pills prescribed.m
The medication is usually not recommended for headaches…but it works for me.
Thank you for the response. It’s been almost 2 years since my Gamma Knife Radiation surgery and the headaches are daily. I have recently found a new neurologist, I am going to the Lahey Clinic in Boston. My previous neurologist was just interested in prescribing meds for a migraine which I don’t have. He flat out said that there was no category for me and the closest fit was a migraine. Super frustrated with that neurologist. I’ll be going for my 2 year MRI/MRA next month and then The new doctors in June. I hope I get some help - this whole thing has changed my personality. It’s not good! I need a break from the headaches. I feel very alone that’s for sure.