My mom is the one with the AVM…she has recently been having a lot of bad seizures, debilitating ones that leave her in severe pain. She refuses to go to the hospital anymore because there is nothing they can do for her…according to her doctors it is just a matter of time. My question is this…is there anything at all that I can do when a seizure comes on that will make her more comfortable or minimize it some? When they happen, I am just lost…no clue what to do except make sure she knows I’m there 
Tammi,
Is your Mom on any anti seizure medication? If not would her doctor prescribe her some? My husband is the AVM survivor and never had seizure one until after his craniotomy two years ago this month. He has been on seizure med since, it did take quite a while to get the “right” drug that would control those evil grand mal seizures and also one that he could live/function with. Usually each of his siezures would happen when he was “weaning” off of meds or totally not on any seizure med. I know one he had about 6 months after surgery where he had been off of the seizure med for about a month was horrible, scared me to death, we happened to be on a mini beach vacation by ourselves and it was awful, to be far from home in a hotel and that happen. I packed up immediately and drove the 4 hours home late at night, I just was pretified. I am a first responder at work and what I have learned about seizures, to make sure the person is “safe” from harm so they don’t fall, bump their head, etc. or while they are having the seizure to not hit something that would harm them. You should not try to stop them from having it, of course if it lasts long you should call 911. Afterwards you should keep them comfortable and not let them walk around until they are really “with” it. I hope you can get some help for you Mom, hopefully medication if she is not on it already or perhaps she needs a different type. My husband now goes to a seizure doctor not just a regular neuro, so that may be a thought as well. GM SEizures are extremely hard on people and I would notice my husband “take a step backwards” on his recovery everytime he had one. Please know I’m keeping you all in my prayers!
Blessings!
Marie
Please see the Epilepsy Foundation’s “first aid for seizures” page: http://www.epilepsyfoundation.org/about/firstaid/
Seizures are extremely stressful, so one of the best things you can do is keep calm and not add to the stress on your mom. My husband says that one of the worst things is the way everyone around him panics and fusses after a seizure. They mean to help, but he really wants to be left in peace to recover.
Has your mom gotten a second opinion? Another neurosurgeon might be able to treat the AVM. I looked at the story on your profile, and I also wonder whether she’s really gotten enough information to decide that she doesn’t want an operation in case of a bleed. People DO live through some AVM bleeds, so not having an operation in case of a bleed might leave her living with some serious deficits that could have been prevented or lessened by an operation. Has she had the chance to talk with a neurosurgeon who can really explain the possible outcomes of a bleed, what rehab would really be like, and so on?
I hope some of this helps.
Thank you so much! She is on seizure meds but for some reason doesn’t seem to be working too well. I know that it is working SOME because she had to stop taking it for a while a couple months ago and they almost doubled in number…the small ones.
Thanks JH…yes, we’ve been to several specialists. Her dr is from dallas. He trained under a specialist from Pheonix and a dr from Beth Israel has seen all of her records. They have all determined hers to be inoperable due to its size and location, and the 4 feeders running off of it. They actually wanted to use her as a topic at some kind of seminar. If I’m not mistaken (and I may be here, I can’t remember all of what the dr in dallas told us) they rate them on a scale of 1- 7??? Anyway, hers is a 6.5 is what they said. I don’t know what exactly that means…I just know that when it happens I pray like crazy. She had a GM yesterday, which prompted me getting on this website. Last one was Labor Day…OH and YES! She hates it when everyone just stands around and stares at her! I want to tell them to go away for a little while, but I know they are scared too…
Marie, were you referred to the seizure doctor by your neuro or did you find him on your own? I am very interested in possibly finding one…
Tammi,
Steve’s neuro referred him to the epilepsy center about an hour from us after working with Steve for about 9 months to control his, a doctor who specilizes in seizures is a epileptologist. I see you are from TX and am assuming your Mom is there also, you could try this Find an Epilepsy Center - National Association of Epilepsy Centers website to see if there is a seizure center close to you. Where as we loved his neuro, the seizure center is I believe more up to date on new meds and meds that cover the type of seizures your Mom is having. I hope this helps, I know how frightening they are to witness and how hard they are on your poor Mom.
Blessings!
Marie
Tammi Welch said:
Marie, were you referred to the seizure doctor by your neuro or did you find him on your own? I am very interested in possibly finding one...
Tammi: I do not know what type of seizure your mother has, if they are partial or GM, if she is conscious or not, or how long they last for?
You asked: My question is this…is there anything at all that I can do when a seizure comes on that will make her more comfortable or minimize it some? When they happen, I am just lost…no clue what to do except make sure she knows I’m there
How do I like people around me to react when I get seizures?
First of all, quietness, calmness, darkness, comfort like a flat pillow under my cheek, ankles and knees, to lie on my stomach. Often it helps me to get 10 mg Stesolid (diazepam) given rectally by e.g a nurse when I am in hospital, even though it does not stop the seizure in my case, it will shorten the attach and make it more easy to face.
I always carry Stesolid with me, but it is not always people around know how to give it to me, but it is not difficult to do, once you have been told how to.
Have you mother tried this?
What I do not want when I have a seizure:
That people panic, twist my body around (my dystonia will fight against it), try to speak to me, a big pillow under my head or anything in my mouth, to be touched in any way (just want to be left alone)
All this is impossible for me to explain during an attack, even if I am conscious, I often but not always loose the ability to talk.
How people react is almost always a combination of what I would like and what I do not like.
Have you asked your mother what she would like you to do or not to do?
Her knowing that you are there and that she is not alone is maybe the best comfort you can give.
Hanne xxx
Hanne…that is so helpful! Thank you! My mom has lost consciousness twice since she started having seizures, but that was a long time ago. She is usually aware, but can’t talk well at all. I have asked her if there is anything I can do for her and she says she just doesn’t know what would make it any better. I thought some advice from others that actually go through it may help me! And you have! Thank so much to all of you!