Hi all, how are we all keeping? It has been a strange year.
January 2021 will mark 2½ years since I had gamma knife radiosurgery.
I have been experiencing visual disturbances which I had prior to gamma knife. I have since been experiencing scintillating scotomas which often subside after about 20mins. However on Thursday 3rd December 2020 I experienced another scintillating scotoma in which I lost consciousness and I had a seizure at the station on the platform. When I woke up I was surrounded by two paramedics. I had no idea what had happened.
It was evident that I had a seizure because I had bitten the inside of my mouth and I bumped my head and my muscles are very sore.
Is it possible to still experience seizures post gamma knife? I have been very stressed lately and I have been lacking in sleep prior to the seizure. Could this have been the cause?
Hi Chan, sorry to hear about your seizure. That must have been very frightening. We’re you diagnosed as a result of a seizure, or a bleed, or something else?
I’ve had gamma knife on my right occipital AVM (SM grade 4). I’ve had visual disturbance on my left for as long as I can remember. I’m 42 and over the last 10 years or so I realised that it correlates strongly with stress, and usually is followed or accompanied by a low grade headache and feeling not so well. The disturbances tend to last 30 mins or so and in some cases have made watching TV impossible for a short period. Weirdly in retrospect these episodes were never ‘scary’ to me as they sounded so like migraine and just assumed I was having migraine like symptoms right up until my haemorrhage in April 19. As a result of that I lost the lower left peripheral vision in the area where the disturbances are, although I still have the disturbances in that same place, despite being unable to see anything there!! I would describe it as being like rippling water/shimmering. I assume these are scotomas like you have described. The reason I mention all of this is that in my case the disturbances are certainly linked to stress, happen more when I’m tired, and I guess these are also conditions when seizures are more likely to occur. I’ve not had a seizure, and so far 18 months after gamma I have thankfully had only mild side effects. I really hope yours improve.
Best
Jonny
I first had a seizure in June 2016 a day before my birthday. It was following this seizure that I had investigations done and I was diagnosed with a left occipital AVM later following an MRI scan.
I usually always get visual disturbances in my right eye before my migraines. I now get scintillating scotomas every now and then. I really wasn’t expecting to have a seizure. I’m due my MRI scan soon so it will be interesting to see what this shows.
I was cleared of my AVM (left temporal) following four embolisation operations and gamma knife. I did suffer a sleep seizure shortly after the gamma knife but then went seizure free for 10 years with being put onto medication (Tegretol)
This definitely helped. My doctor made the stupid recommendation to change my medication and I suffered a seizure whilst driving - I became unconscious. Similar to how you described, this was also following having a cup of tea and bumping my head that day. Thankfully I’ve been seizure free for over 12 months after being put onto the right medication again.
It’s horribly scary but the medication definitely helped, as has cutting caffeine completely out. Tea and coffee were huge triggers. Now I just drink decaf. Not having much to eat or having little sleep doesn’t help either.
I do hope that this settles down for you and you can find a solution.