Post-Gamma Recovery Update

It's been quite a while since I've been on here! I think that last time I posted on here I was taking dilantin after a grand mal seizure four days following my gamma knife surgery in December 2011. Turns out I was allergic to dilantin, and eventually was able to stop taking it. Summer 2012 went by without any difficulties or seizures, even without seizure medication. In September 2012 I suffered two grand mal seizures. Luckily my boyfriend and roommate (who's a third year nursing student) were both with me, and were able to keep me on my side and call an ambulance.

Since I was not on seizure medication at this point, my neurologist wanted me to start taking it again. I was prescribed keppra, hoping to have better results than when on dilantin. Unfortunately, over a few months, I realized that the medication was making me severely depressed. I lost interest in many activities, suffered in school, lost contact with my friends, and even my roommates, and had to quit my job. Once I realized the medication was doing this to me, and it wasn't just stress, I decided to take myself off the medication. Within a week I started to feel incredibly better - like a weight had been lifted off my shoulders. In January 2013 I had a one-year follow up MRI and appointment with my neurosurgeon in Hamilton. This appointment luckily came with amazing news: my AVM has decreased 50% in size! However, they wanted me to start taking another seizure medication.

So off to the neurologist I went, afraid to be put on yet another seizure medication. I was prescribed lamictal, with a very slow increase in dose to reduce the risk of rash. So far, I have had no difficulties with the lamictal in terms of allergic reactions or adverse effects. Unfortunately, I suffered three grand mal seizures last week while on the medication. These seizures were the worst ones yet. The first one I was walking my dog, when a spot in my field of vision became blurry and appeared to be flashing. Thinking it was just an ocular migraine, I decided to continue my walk. However, this spot very quickly began to grow, and my mind began to fill with flashes of random memories, lights, and colours. When my vision was completely gone, I dropped my dogs leash and attempted to run back to my house while screaming. After quickly admitting defeat, I fell on a neighbours driveway, screaming, and eventually went into a seizure. I awoke with an unknown girl sitting with me, and a crowd of neighbours on cell phones, and my dog tied up to a tree. Completely confused and unaware of what happened - typically I awake when the paramedics are there who inform me I had a seizure - I mumbled a thank you, asked how long I had been like that, grabbed my dog, and returned to my house. My vision continued to be affected, as I couldn't see anything on the right side of my vision. I felt as though I had had a stroke - I would jump and yelp as things would suddenly appear on my left side without warning. Realizing something was wrong, my brother phoned my parents and comforted me until they returned home.

Luckily, my vision returned, and I started to feel a bit better. I went upstairs to pack for the hospital while my parents phoned my neurologist. Sitting on the floor, my vision started to go funny again and the same thing started happening as before. I went into another seizure, and the paramedics were called. While on a hospital bed, I experienced yet another seizure, just as scary as the previous two.

I stayed one night in my hometown hospital, and was transferred to the hospital where my Gamma Knife took place. After an CT scan, a MRI, a MRA, an EEG, and two more nights in the hospital, I was discharged without any more information than I started with.

Since those seizures, I've still been feeling pretty awful. I find my vision worse than before, and I'm get motion sickness staring at the computer. I'm terrified of having another seizure, especially since I live alone most of the time. It's scary to know that even with seizure medication, and without any triggers (lack of sleep, alcohol, etc) I can still have seizures without warning. It's been a tough journey, and it still doesn't appear to be getting much better.

Wow, Becky, I'm so sorry -- what frightening and difficult experiences! I hope that your doctor can find the right medicine to keep you feeling good and seizure-free soon. If you don't have a medical alert bracelet yet, please get one. Best wishes to you!

Hi Becky. I am sorry for your troubles. You may wish to join this sub-group…http://www.avmsurvivors.org/group/avm-with-seizures-epilepsy
Everyone there will understand your concerns! Your Guardian Angel has been working overtime. It may not seem like it to you. However, did you notice that shortly after these episodes someone has been nearby to help? Please have faith that things will get better. You just got bumped up on my prayer list!

omg you have had a bad time of it! May i ask you was your avm behind your optic nerves and is that why your vision is affected? Also what do the neurosurgeons think the cause of your avm reducing is? Can they not remove your avm now? would this not stop your seizures? so many questions and not enough answers is there! Becky keep your courage up. regards Trish

Sorry to hear all you have been thru, hopefully you and your doctors will find out what works best for you. You say your neurologist, have you followed up with your neurosurgeon or radiation oncologist? I would call my neurosurgeon, you might have a structural issue with your AVM that a neurologist would not understand or know how to treat.. Good luck

I’ve seen a lot of people talking about vision problems. The AVM itself can mess with your eye sight also blurred vision and light sensitivity is common side effects of seizure meds. I have seizures from my AVM but mostly in the left arm and I’ve always been able to feel them coming on. The seizure meds never made much sense to me because the AVM is a matter of blood flow and that’s why blood thinners are bad as well as headache meds cause the aspirin and caffeine. I learned energy drinks trigger seizures for me. If I drink a monster I’ll have a seizure with in the hour. I’ve heard that there is something in energy drinks that hardens arteries.