Hi Brandon, I also have a large inoperable grade 5 avm in my right parietal lobe as well. Surgery will definitely leave me paralyzed and possibly leave me in a vegetative state or possible death. Mine also affects everything from my sensory/ motor cotex down deep into my brain, and reaches over to the temporal lobe. Fun, fun. As far as seizures, I suffer in all 4 categories of simple partial seizures. My medication right now only controls the motor. The one you constantly get. (In which you need to control your blood pressure, that seems to be your trigger.) Also, I've been advised to do nothing that would raise my blood pressure! Not even lifting something over 20 pounds. Even though we have large avm's, the walls of the veins wear extremely thin over time, and could indeed tear from the pressure, resulting in a hemmorage. I have no specialist in my area, so doctors here are clueless. I have to travel HOURS, and spend lots money that I literally don't have. (Not looking for pitty, it is what it is) Oh, btw, I'm 42 yr old. I take topiramate. I'm not driving either, due to bad depth perception, either due to the avm placement or the medication, and fear of a convulsive seizures. As far as my career, I'm a cosmologists. And I'm not working right now. Imagine if I had a full blown seizure while cutting a client's hair!? Omg, I could severely hurt them or me!! Found out out I had an avm about 3/4 years ago when I had enough of the severe migraines with crazy visual auras that would put me down for a week at a time. And accompanied by what I thaught was a stroke, that actually turned out to be a seizure. (Hate those ones!) I also have lesions on my motor and sensory cortex. Started on keppra for 1st 2 years. That was hell. Took myself off. That was a bad idea! Seizures started again, numb on left side, but would start with nausea, taste of blood, I would get extremely hot, then proceeded with numb left cheek and tongue down to foot, up leg, to arm, slurred words, and felt like falling through the floor, with the shakes. (The one's I hate!) Back to ER. After a few of those, got the topiramate. Still have headaches and aura seizures, and really bad pain in my left leg, but it controls the convulsion seizures of my left side, for now. Almost feels like the seizure is going to start but doesn't. Thankfully! But now I have terrible short term memory, I forget words mid sentence, and can't remember simple math some times, I was never like that!! Stupid avm!!! Anyways,, your aura sounds like a psychic aura, sounds like jamais vu. Where something familiar, isn't familiar at that moment. But thinking back, I had always had simple partial seizures, and blowing it off, like, oh that was weird. Or remember waking up a couple times over the years to a painful swollen and purple tongue, and to where my nails had been dug into the palms of my hands so bad that it left small punctures enough to draw a little blood. I was stupid and blew that off too. I didn't think nothing was wrong with me. And maybe it was nightmares due to the ptsd, (I was in a very abusive marriage a long time ago.) I could go on and on about all the crazy stuff I've experienced, but who has time for that, lol.. But like you said, where here for a reason, and cerebral avm is extremely rare!! Funny how regular neurologist think they know about it, but they only the basics, makes me laugh sometimes. Finding a good avm specialist is hard! Well anyways, we're actually very lucky to have survived this long with this monster in our heads! Sorry this is so long, your the only person I've literally vented to, maybe because your identical to me.. If you have any questions, feel free to ask me! I wish the best for you, in health and in all your success!! Keep thriving! 😇
Brandon Schneider, Let's see, anything that makes them less severe... I would have to say, keeping the blood pressure down helps. And in your case, that would also help you! As I have watched all your videos, your triggers were all blood pressure related. The energy drinks, the caffeine, the exercise, etc.. The blood is pumping at a faster rate, hence thrusting the blood from the feeding artery into the small vein/veins, with no capillary in between for protection, to slow it down. It's like filling up a cheap ballon with a pressure washer. So it's swelling up a particular vein or veins surrounding the motor and sensory cortex (they're so close together) and putting the right amount of pressure there, and viola, your seizure begins. I'm not a doctor, but I can only assume that is what might be happening. Avm's act as benign tumors. And what do tumors cause,.. Yup, seizures, because it irritates the surrounding tissue of the brain. Then that irritates the neurons, then, boom, seizure time! Ever since I found I have avm, all I do is research like a lunatic! Lol. Do you get any other auras considering you already have psychic aura? Or at least have a few different psychic ones? Just out of curiosity.. (Xtina is short for Christina)
Brandon Schneider I totally relate,, the confusion part, it also gives me anxiety. And the fear of doom, yuck, hate that! I end up getting very upset with my kids as well. I feel terrible. But now they understand to give me space due to the circumstances. Thankfully they're old enough to understand. And yes, the deaf thing, I get that as well, mine is accompanied with a staedy ring. Do you get that with the deafness as well?.. You need to teach yourself to listen to the aura, go sit somewhere safe, close your eyes, start breathing in and out, nice and slow to bring down that pressure before reaching for the meds. I mean, have it in hand just in case, so you can pop it under your tongue. But try to self control first. And see if you can, but you have to do that as soon as you have the aura, not after the aura! Or it's already too late. So weird, we have the same avm location and side effects. Have you ever had the visual auras? Once in a blue moon I've had what looks like green and blue tiny dots of glitter across my vision. You don't suffer from migraines? Or maybe severe headaches after the "big" seizure?
Thank you so much for your dialogue(I know it's been a long time. My apologies for not responding in so long. Life got in the way and I didn't stay vigilent with my channel. I have put out more videos since then and learned a lot of helpful things since then. If you have any questions/issues you'd like me to cover I would love to make some new videos for you and the rest of the community!
I know this is 5yrs go, but sweetie I'm Epileptic 52 years, yes.. I was born with epilepsy, I've been on Dilantin and phenobarbital for 40 years after that I've been on few other medications now I'm on Trileptal and Topamax the wonderful prescriptions talked to you in awhile just good luck and God bless and no you're not going to die❤
Hi! thank you so much for your comment. My apologies for not responding in so long. Life got in the way and I didn't stay vigilent with my channel. I have put out more videos since then and learned a lot of helpful things since then. If you have any questions/issues you'd like me to cover I would love to make some new videos for you and the rest of the community!
@@lifewithsideeffects4482 Hi!🙂No problem.I take Keppra Xr and was also on Trileptal in the past.Hope you are feeling better and that God cures your epilepsy.❤️
Hi Brandon, I also have a large inoperable grade 5 avm in my right parietal lobe as well. Surgery will definitely leave me paralyzed and possibly leave me in a vegetative state or possible death. Mine also affects everything from my sensory/ motor cotex down deep into my brain, and reaches over to the temporal lobe. Fun, fun. As far as seizures, I suffer in all 4 categories of simple partial seizures. My medication right now only controls the motor. The one you constantly get. (In which you need to control your blood pressure, that seems to be your trigger.) Also, I've been advised to do nothing that would raise my blood pressure! Not even lifting something over 20 pounds. Even though we have large avm's, the walls of the veins wear extremely thin over time, and could indeed tear from the pressure, resulting in a hemmorage. I have no specialist in my area, so doctors here are clueless. I have to travel HOURS, and spend lots money that I literally don't have. (Not looking for pitty, it is what it is) Oh, btw, I'm 42 yr old. I take topiramate. I'm not driving either, due to bad depth perception, either due to the avm placement or the medication, and fear of a convulsive seizures. As far as my career, I'm a cosmologists. And I'm not working right now. Imagine if I had a full blown seizure while cutting a client's hair!? Omg, I could severely hurt them or me!! Found out out I had an avm about 3/4 years ago when I had enough of the severe migraines with crazy visual auras that would put me down for a week at a time. And accompanied by what I thaught was a stroke, that actually turned out to be a seizure. (Hate those ones!) I also have lesions on my motor and sensory cortex. Started on keppra for 1st 2 years. That was hell. Took myself off. That was a bad idea! Seizures started again, numb on left side, but would start with nausea, taste of blood, I would get extremely hot, then proceeded with numb left cheek and tongue down to foot, up leg, to arm, slurred words, and felt like falling through the floor, with the shakes. (The one's I hate!) Back to ER. After a few of those, got the topiramate. Still have headaches and aura seizures, and really bad pain in my left leg, but it controls the convulsion seizures of my left side, for now. Almost feels like the seizure is going to start but doesn't. Thankfully! But now I have terrible short term memory, I forget words mid sentence, and can't remember simple math some times, I was never like that!! Stupid avm!!! Anyways,, your aura sounds like a psychic aura, sounds like jamais vu. Where something familiar, isn't familiar at that moment. But thinking back, I had always had simple partial seizures, and blowing it off, like, oh that was weird. Or remember waking up a couple times over the years to a painful swollen and purple tongue, and to where my nails had been dug into the palms of my hands so bad that it left small punctures enough to draw a little blood. I was stupid and blew that off too. I didn't think nothing was wrong with me. And maybe it was nightmares due to the ptsd, (I was in a very abusive marriage a long time ago.) I could go on and on about all the crazy stuff I've experienced, but who has time for that, lol.. But like you said, where here for a reason, and cerebral avm is extremely rare!! Funny how regular neurologist think they know about it, but they only the basics, makes me laugh sometimes. Finding a good avm specialist is hard! Well anyways, we're actually very lucky to have survived this long with this monster in our heads! Sorry this is so long, your the only person I've literally vented to, maybe because your identical to me.. If you have any questions, feel free to ask me! I wish the best for you, in health and in all your success!! Keep thriving! 😇
Brandon Schneider, Let's see, anything that makes them less severe... I would have to say, keeping the blood pressure down helps. And in your case, that would also help you! As I have watched all your videos, your triggers were all blood pressure related. The energy drinks, the caffeine, the exercise, etc.. The blood is pumping at a faster rate, hence thrusting the blood from the feeding artery into the small vein/veins, with no capillary in between for protection, to slow it down. It's like filling up a cheap ballon with a pressure washer. So it's swelling up a particular vein or veins surrounding the motor and sensory cortex (they're so close together) and putting the right amount of pressure there, and viola, your seizure begins. I'm not a doctor, but I can only assume that is what might be happening. Avm's act as benign tumors. And what do tumors cause,.. Yup, seizures, because it irritates the surrounding tissue of the brain. Then that irritates the neurons, then, boom, seizure time! Ever since I found I have avm, all I do is research like a lunatic! Lol. Do you get any other auras considering you already have psychic aura? Or at least have a few different psychic ones? Just out of curiosity.. (Xtina is short for Christina)
Brandon Schneider I totally relate,, the confusion part, it also gives me anxiety. And the fear of doom, yuck, hate that! I end up getting very upset with my kids as well. I feel terrible. But now they understand to give me space due to the circumstances. Thankfully they're old enough to understand. And yes, the deaf thing, I get that as well, mine is accompanied with a staedy ring. Do you get that with the deafness as well?.. You need to teach yourself to listen to the aura, go sit somewhere safe, close your eyes, start breathing in and out, nice and slow to bring down that pressure before reaching for the meds. I mean, have it in hand just in case, so you can pop it under your tongue. But try to self control first. And see if you can, but you have to do that as soon as you have the aura, not after the aura! Or it's already too late. So weird, we have the same avm location and side effects. Have you ever had the visual auras? Once in a blue moon I've had what looks like green and blue tiny dots of glitter across my vision. You don't suffer from migraines? Or maybe severe headaches after the "big" seizure?
Thank you so much for your dialogue(I know it's been a long time. My apologies for not responding in so long. Life got in the way and I didn't stay vigilent with my channel. I have put out more videos since then and learned a lot of helpful things since then. If you have any questions/issues you'd like me to cover I would love to make some new videos for you and the rest of the community!
I know this is 5yrs go, but sweetie I'm Epileptic 52 years, yes.. I was born with epilepsy, I've been on Dilantin and phenobarbital for 40 years after that I've been on few other medications now I'm on Trileptal and Topamax the wonderful prescriptions talked to you in awhile just good luck and God bless and no you're not going to die❤
You are handsome 😍
Hi! thank you so much for your comment. My apologies for not responding in so long. Life got in the way and I didn't stay vigilent with my channel. I have put out more videos since then and learned a lot of helpful things since then. If you have any questions/issues you'd like me to cover I would love to make some new videos for you and the rest of the community!
@@lifewithsideeffects4482 Hi!🙂No problem.I take Keppra Xr and was also on Trileptal in the past.Hope you are feeling better and that God cures your epilepsy.❤️