Great to hear your update Monica, and that the Gamma Knife procedure went well. Sounds like your experience was the same as mine here in Canada, just wonderful folks. It sure makes it a lot easier. Hopefully you’re able to get some resolve on the seizure part, certainly something to stay on top of with the drs. Take Care, John.
Thanks so much John 
Hi Monica,
I just got back from my appointment with the neurologist. He is not sure whether my symptoms are 1) type of migraine or 2) seizure activity, either would be due to my AVM. I will first be taking an anticonvulsant called Lamotrigine. I will start on 25mg for 2 weeks, then increase to 50 mg for 2 weeks. If my visual episodes continue to occur I will continue to increase the dose over the following 2 months until I reach maximum dose. If at maximum dose I still have visual episodes then the possibility it is due to seizure activity will be ruled out. I see my neurologist in 3 months for a follow up, if this medication doesnt work, I will be put on another medication he says is not licensed in many places in the UK but is available at the hospital which will likely work to prevent the visual episodes.
I will let you know how it all goes!
Corrine
Hi @corrine i was prescribed exactly the same medication, it’s called Lamictal here. That is until we find out if it’s seizure activity or the avm stealing blood from other areas. I have to start with 1/2 of the 25 mg pill and increase the dose every week until i reach 100mg on the 4th week. I asked the doctor to please put me under the minimum and she even commented the usual dose to prevent epilepsy is 300mg.
Thanks for sharing your story as I wan’t given any timeframe as to when the meds are supposed to help if it is indeed seizure activity what’s going on. You were given really clear “instructions” and that is awesome. I will ask my doctor about the timings next time i go.
I will keep in touch. A hug from Spain!
Hi Monica,
That is so comforting that we both had similar symptoms and were given the same medication! I was told that basically, the dose that could work could be anything between the lowest and highest dose. This is why I must keep steadily increasing the dose until I find a dose that prevents the visual episodes. If the medication still doesnt work even at the highest dose then my visual episodes are not due to seizure activity. He believes then the only cause is my brain tissue temporarily stopping working as a sort of migraine type result of the AVM.
Let’s keep each other updated on how we get on with this medication!
Hugs from England
Corrine
Oh yes it is comforting, so sorry for both of us as it could be something not health related that we shared, but oh well. That’s life, right? At least we know that different doctors from different countries share the same opinion. Something i just thought i’d tell you in case gou haven’t tried; before GK i was able to sort of “control” the flashes on my eyes. Usually i get them at work. I guess it’s normal as it’s a place where i spend lots of hours a day and where i’m usually under stress. So anyway, whenever i see the slightest flash i run to the bathroom, sit on the toilet (i know not the best location but one where i know nobody is going to bother me) and close my eyes and brethe slowly and deeply. In a few seconds the flashes will be gone. I told my dr. and he mentioned that the flashes are then probably not seizures but again the avm stealing blood from the vision cells, so that when i breathe, more blood or more oxigenated blood can flow to those affected areas (again this is explained using my own words and a guess of the dr., he wasn’t 100% sure). That being said, the last flashes + seizure or whatever it was that i had on my trip back home from GK I coudn’t control with the breathing, that was something much stonger than the usual flashes.
Anyway just thought i would let you know in case it helps hopefully you don’t even need it though!
Ladies,
I have a book called “Migraine” by Oliver Sacks. I’ve lent it to someone else to read at the moment but I’m sure that visual aura, such as a scotoma or flashing lights, etc. usually resolves in 10-20 minutes.
If a migraine aura is triggered by something, then removing the trigger obviously allows the 10-20 minute resolution time to start; staying in a situation where an aura is being triggered would likely prolong it.
Obviously, your visual effects may be auras or may be other things, influenced by you AVM or whatever effect it is having on your brain, or may be related to a bit of damage that has been done, rather than being a “normal” migraine.
Hope that helps a bit. I read quite a bit about migraine last summer.
Best wishes
Richard
Thanks so much for your input Richard, any information is much appreciated. I’ve had flashes last for more than an hour, in one occasion before GK it even developed in speech issues for a long hour as well. Usually the flashes i get are not followed by a migraine (i know some people’s do). It’s usually just the flashes. And then some other days i have migraines with no flashes before. I’m not sure yet what the trigger is in my case but will let you know once i find out if i do 
.
Hi everyone, I’m worried. I had GK treatment for a left occipital AVM on May, it is now July and I’ve had a couple of episodes where I feel a burnt smell and I think I go into panic attack right when that happens.
Well, not sure if it’s a panic attack or some sort of crisis result from the GK. The thing is when I was traveling back home from the HK surgery I had a bad episode of what I described previoulsly, so bad I had to go to the emergency room, I was shaking, could see flashes on my eyes, heart speeding like crazy and the burning smell. I think that time it was an epillespy crisis, my neuro agreed and I’m taking Lamotrigine result from that. So now everytime I smell that same thing my body goes into panic mode, as if I know something else is going to happen. My legs and arms feel so weird, I can feel the blood tingle though them, my heart races, and I feel as I’m going to convulse anytime.
I think it’s a panic attack and not a seizure because the other day I suddenly felt the burnt smell and went into that same panic mode, I went running to grab the Diazepan - which my neuro recommened if any similar episoded ocurred - and my husband immediately told me that he was semlling the same thing, so this time it wasn’t my brain playing games, it really smelled like a burning tire. But I had the same panic symptoms as when the smell comes from my brain.
Not sure if all of this makes sense, but I wanted to ask you, has anyone experieced something similar?
Thank you as always for your support.
Monica
Smelling burning rubber or a metallic burning smell seems quite common. See these links I found:
https://avmsurvivors.org/search?q=Burn%20smell
So it may be an effect of a migraine aura or seizure-like thing. It does sound to me like you’re panicking slightly when you experience this, so finding a way to treat it as a bit more “ok” would be good.
Have a read of these stories to see how other people fared.
Hope this helps,
Richard
Thanks so much as always Richard, i will definetely take a look at the links and talk to my doctor. As you say it might be activity in my brain but it shoudn’t affect me in such a manner.
My neurologist says they’re a type of Aura; one neurologist I have called it a complex migraine and another one called it an early onset of a partial simple seizure;unfortunately when I get that smell and taste it usually kicks in a panic attack so it kind of compounds the affect.
The fact that you’re AVM is in the occipital lobe probably explains the flashing lights is I can get visual disturbances sometimes too.
Thank you @Mike5 it really helps to know I’m not going crazy. I experience exactly the same thing. Has it ever gone worse? I mean has it ever started wih the smell and developed into something worse? Sorry to ask, I’ve seen your profile so i’m sure you’ve gone through much worse.
Yesterday i stood in front of my oven, i was cooking a pizza, i could feel a bit of that burnt smell and could already feel that panic, but I thought don’t move take it in and try not to worry. I guess i thought it would work as some sort of therapy. As they say expose yourself to your fears.
Thanks again
@MonicaMC…only once did it get worse and that was within the first months 6 months of my craniotomy; I had a pretty significant seizure on my left side… I was twitching and trembling, I had some visual hallucinations and I had to go to the hospital overnight; but other than that it’s never gotten worse.
generally when I get the aura feeling I just sit back relax and let it pass, sometimes I have to take a low-dose Xanax to keep the panic attack from making the auras worse.
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Thanks so much @Mike5 that helps a lot. At least i know relaxing is the way to go, my neuro recommended Diazepan if the smell situation gets worse. Not sure if it’s availabe everywhere but it’s probably similar to xanax. I’m a bit paranoid so i carry it with me all the time. I hope you feel much better after all you’ve gone through. A big hug from Spain.
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Hi Monica!
I am currently on 100mg of lamotrigine daily and now my “visual episodes” have reduced from several a week to once or twice a month. We will be increasing the dose a little more which should stop these partial seizures once and for all!
If the Lamotrigine isn’t helping with these episodes your having I’d advise you go to see your neurologist. My uneducated ideas is it could mean you need a higher dose for it to work, you might need to try another anticonvulsant or these arent seizure related and more migraine aura related requiring an alternative specialised medication.
I think also your response to these burning smell episodes could possibly be a case of trauma/fear brought on by the event that led you to the emergency room before.
Regardless hopefully seeing your neurologist will help figure out what is happening and also give peace of mind. If you have accessible mental health services, counselling or CBT could also help alot with managing paranoia,anxiety too - did wonders for me!
All the best,
Corrine
Thank you so much for the update @corrine, so happy to hear that you are doing better. Do you have any news on the GK treatment?
I’m on 150mg of Lamotrigine daily now. I was on 100mg before and my auras with the smell symptoms and being ko after continued. For now, I knock on wood that haven’t had any since I’m on the 150mg dose.
I was afraid of taking Diazepam ( a muscle relaxant) but last time I went to the neuro she mentioned that once a week - which is the frequency I was having the seizures - it won’t hurt. So the last aura I had before taking the 150mg dose of lamicatal, I took the Diazepan immediately and the aura stopped and didn’t have any more symptoms, so it looks like I’m covered for now. But I’m still a bit paranoid so I take the meds with me wherever I go.
I’ll keep you posted see how the 150mg works in the next couple of weeks.
Best regards!
Monica
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Monica
Fingers crossed that this dose of Lamotrigine will succeed in completely stopping these seizures! I need to go to the doctors again and discuss increasing my dose a little higher and finally be totally seizure free. Yes definently we need to keep one another up to date on how we get on!
If it brings you any comfort, this panic doesn’t last forever. It used to freak me out initially when it started happening too, now it doesn’t phase me at all. This is new to you and it’s natural for it to cause anxiety. Ofcourse hopefully it stops happening before this but what I’m trying to say is the anxiety will pass in time.
It’s good that you bring the diazepram with you just incase to give some comfort - I hope soon you will not need it anymore (with seizures 100% gone).
Lots of love and I hope you’re having a lovely summer,
Corrine
Thanks so much @corrine
I was so happy to haven’t had any weird activity for the past few days and today bang! Once again. But now I’m almost sure that when they are not preceeded by the aura they are probably panic or anxiety atacks. If the aura happens i’m pretty sure it’s due to whatever is going on on my brain and lamotrigine is probably working to avoid it. But i think i’m developing anxiety related to real smells (real as not phantom smells).
Here’s what happened today: i was at the office. We are remodelling the space so i could smell something burnt because of the remodeling activity. So that was a real smell. I started to feel uneasy and then the hole thing unfolded. Tingly fingers and lips. The sensation that the tong has swollen, heart racing and overall fear that something is going to happen. So i took a Diazepam 5mg. And i felt better but not 100% myself until a couple of hours passed.
So i think my next step will have to be to visit a psicologist as you mentioned to be able to overcome my fear to that specific smell which my brain possibly relates to that day when i had my worse seizure.
I’ll keep you posted on whatever they tell me is going on.
You too have a great summer! 
unfortunately anxiety can be a big issue… I have an aura and then my anxiety kicks in and it snow balls from there…