Hi guys today I was driving and had a few minutes where I went blank and couldn’t talk even though my brain knew what to do my body couldn’t act for about 5mins…for about an hour I didn’t feel 100% and was very scared.
At the time I was driving my wife and baby son…I quickly pulled over and stopped immediately and got my wife to drive BUT the minutes before I struggled to tell her what was wrong AND of course I thought the worse and that I was suffering a bleed…it’s been 4yrs since my AVM was removed in 2011 via surgery and have had every test you can think of…anyway turns out they think I had a seizure of some sort and now I need to get a MRI & EEG done again…BUT I can’t drive which now affects my job as I rely on driving…I have to see a neurologist and have never done so before…should I also see by neurosurgeon ?
Feeling down and just need some comfort after spending 8hrs in ER …they didn’t want to do a CT as they didn’t believe it was a bleed etc and as much as I’m scared and it’s a problem for me I still have faith in God…thank you my AVMers I truly love you guys…God bless!
Adrian, I’m sorry to hear it, but thankfully you, your bride, and baby son were okay.
You may want to call your neurosurgeon to get a good recommendation for a neurologist, otherwise finding the right one can be like a needle in a haystack.
Are you on anti-seizure medication? Many people who’ve had a bleed need it (including me). I never had a seizure even though they put me on anti-seizure medication after my rupture. I wasn’t on any medication for anything prior to my bleed, so after a year decided to try and get off with a neuro’s assistance. It took 2 or 3 months to wean off, then on the third day off the drug completely, I had a grand mal (the mother of all seizures). I’ve been back on Keppra for a year with no issues (driving, etc).
I will keep you in my thoughts and prayers, Adrian. God bless!
Adrian, What you wrote sounds like what I have...they call them simple seizures.. Mine last for about 5 minutes, but I don't feel normal for at least a day after having one.
I was put on Keppra an anti-seizure med immediately after my hemorrhage. Two years later, like Tim, I tried to wean myself off and had a Grand Mal. Therefore, I will never stop taking my prescribed dosage every again.
If you aren't on an anti-seizure med, please discuss this with your neuro doctor.
Thanks guys…I was on medication for a short period after my surgery however was not allowed to drive for 6 months and that’s it…I never in the past 4yrs plus have had any major issues and hope everything works out fine…God bless guys it’s appreciated on so many levels to know your not alone…they referred to this incident as “absence seizure”…is that what yours were Louisa?
In saying that I think they want the EEG done again to see if there’s any problems as you would know they can’t diagnose a seizure unless they see it…absence seizure is kinda like daydreaming from what I researched and felt at the time…mind due I have been under a lot of stress lately…all contributing factors…God bless!
I'm on 2,000 mg of Keppra twice a day since the craniotomy, but every once in a while, I'll have a Simple Seizure.
What happens is that because my body feels weak, I sit down immediately. My brain just stops working. I just stop thinking. I cannot see around me. I cannot talk even to tell anyone what is happening. It only lasts for a few minutes, but I need to rest afterwards.
Compared to what it was like when I had a grand mal...it sure is simple compared to a grand mal. I am positive that if I don't take my med on time twice a day, I will have another grand mal.
I've heard of a few AVM'rs who do not even take the med and started having seizures several years after their cran. So they can start a few years after your craniotomy.
If there is a neuro-epilepsy doctor in your area...make an appointment.
Thanks for the info…mine wasn’t that bad at all compared to what your description of your one was…just went blank but still alert about where I was and so on…I have a neurologist that the hospital referred but will ask my neurosurgeon, who I have only ever dealt with pre & post operation since my original bleed.
They stated I had a 5% chance of seizure after surgery and thank God I’ve been ok besides the usual headaches etc…God bless and thanks again for all the info.
I intend to see everyone I need to ASAP so I can get my recovery back in order…strange after 4yrs you think your starting to get better and fully recover and something like this sets you back again.
Adrian, For me, seeing a neuro-epilepsy doctor is the way to go. They are better educated to decide whether you had a seizure or not. Wishing you the best.
Glad to hear you’re ok right now. I was just recently in the ER my self. Even if they don’t think you need a CT scan, I would still ask for it. What type of surgery did you have for your avm? I’m sure you had to have seen a neurosurgeon for that. I would contact them again.
Thanks Deagles…I had right frontal AVM removed in 2011…saw my neurosurgeon today by pure luck getting in quick and have arranged a MRI & EEG in the next week…my EEG got pushed to tomorrow instead of early September however a neurologist can’t see me until end of October…if I can’t drive then I can’t work so crossing my fingers and praying…God bless hope your all good now!
Adrian,
I also have these episodes and have been told they are a form of seizures. Luckily only once when I was driving, though I was alone and I became very confused and had no idea where I was, I pulled over and it passed after about 5 minutes. The more common type I get is when I am reading and I am looking at words, I can see all the letters but I can not form and words not even the simplest words. I can remember being in the grocery store with my husband and trying to read a box of cereal and I had to ask him what “RED” spelled. He just looked at me like I was kidding, and I said I think we need to leave something is wrong. I don’t get any warning except they usually happen when my migraines are most severe. I continue to treat with my neurologist every other month. After my AVM repair (6 yrs ago) my migraines became increasingly worse so I also treat with a neurologist at a headache center. I am hoping between the 2 of them and a mix of medicines they can correct these seizure activities also. I wish you good health Adrian and no more of these occurrences as I know they can be very frightening.
Patty
How scary for you! I have a DAVF. Action ,I believe, is the course to take because it will help you get to the bottom of your symptoms, but also release the sense of helplessness I think you’re experiencing. I would see a Intervention Radiologist , they specialize in strokes, AVM’s. I don’t know what kind of tests you would need.
in the meantime I search out someone who can teach you deep self relaxalation techniques. This kept me so calm, before my surgeries and erased the anxieties I was experiencing.
Please know I am here for you, all of us are as you travel this path.
Please let us know what each step brings.
Thinking of you,
Weaver
P.S. I haven’t had any seisures, reading the comments above those folks seem to have better advice than I! But I would still do the relaxation if you can:)
Adrian, wow, that sure sounds scary. I would push for whatever scans you think you need,regardless what anyone says.Yes if it was me I would inform my neurosurgeon, what have you got to lose,two heads are certainly better than one. The sooner you start medication the better,so it can be controlled.Trust in our merciful God.
Remembering you and
Your family in my prayers.
God bless you
Adrian I had many seizures after my AVM surgeries, and only one before surgery, so i was confused about the seizure/brain surgery connection. Since I did have the seizure before the surgery, I was put on seizure meds. I was first put on dilantin and phenobarbital, which i tolerated well. I had some breakthrough seizures (always grand mal) but was grateful i had a very good aura that gave me plenty of warning a seizure was - or might be as sometimes the aura was all i felt, no seizure - about to happen. I went through a number of medication changes, finally settling on dilantin and mysoline. there was a period of time i took tegretol, and while i had no seizures, i had double vision. i never told the MD about the double vision because I was grateful i did not have anymore seizures. i just closed one eye and lived like that for a little over a year. i took dilantin and mysoline for over 30 years without noticeable side-effects except after 25 years i had some bone loss (osteopenia) due to the long time on the dilantin. I stopped taking the dilantin and then only took the mysoline. While the blood levels for the medication were annoying and intrusive on my time, I incorporated them into my life. I had no significant side-effects on those medications, but people are different. Do not be afraid to take meds. living without seizures is worth taking medicines... If they decide you should take meds, I hope they find some meds that you can tolerate and that help you not live in fear of a seizure.
Hi Carlton8 and thanks for the feedback…my neurosurgeon mentioned this aura feeling and talked about possibly feeling a seizure may come on etc…what did you feel when that happened and do you know if you do get that warning does that allow us to stop it mentally cause I would think it wouldn’t be the case and there would be no stopping a seizure…God bless!
