Seizure, 1 year after craniotomy

just wondering if anyone has had seizures after being “cured” from an avm? its been almost a year since my craniotomy, ive been taken off my seizure meds becuase i loath them! and at work the other day almost through the whole shift and i wake up in an ambulance. another seizure. i see my neurologist today to find out more, been put back on keppra unfortunatley. im begining to think this is never gonna end, i know i will be told no more driving for a while wich is a burden on my wife and family. not to mention i work night shift so driving me to and from work is gonna be a pain! ive had 2 seizures the first resulted in my avm diagnosis. both occured at work and our medical staff has no clue what to do. they call an ambulance and im footed with a 900 dollar bill. feels good to vent out my frustration a little, and hope someone might be able to give me a little insight as to why or how long this will be happening

I had a grand mal about 5 months after my craniotomy. I had been on Dilantin for about 7 months prior to my craniotomy, then another 3 or so months after the surgery. About 2 months after being weened off of Dilantin, I ended up being hit with the grand mal, which was the first (and so far, only) GM that I’ve ever had. I had been on the Dilantin due to countless simple partial seizures prior to my surgery, but nothing like this one. I was immediated placed back on Dilantin and scheduled for an appointment with my neurologist. He said that it looked like I was going to be on medications for a while… Possibly forever. Som he put me on Keppra as he felt it had a lower number of major side effects. I was originally placed on 3,000mg, and after a couple of years, brought down to 2,000mg. I have now been on Keppra for close to 5 years. I agree, it is not fun stuff to be on, and I would rather not have to take it, but I would also rather deal with the seide effects than risk having another grand mal seizure.

So sorry to here this for you, yes seizures are evil, especially those GM type. My husband is the AVM survivor and dealt with seizures (6) the first year after his crani. He is still on med, combo of Lamictal and Keppra (both generic). His side effects are so much better now and (knock wood) no seizures for a long while. His doc also said he could be on meds forever so… I know he wants to stay on them as long as he is working as never wants to have one at work again. From what I’ve read damage to the temporal lobes is very bad seizure wise, that that area tends to have seizure problems more than other areas. His was his left temporal lobe. Have you asked the doc for another type of med if Keppra makes you feel so bad? Has your doc said he thinks you may be on meds forever as well? Would love to know of other AMV people on here who had temporal lobe cranis and if they ever got off the seizure meds.
Best of luck to you and your family! I pray no more of the evils for you!

I will have to say Yes to your question. “Micro-seizures” is the problem. Taking Dilantin for it. Didn’t find out about untill about 16 years later. That was a pain in the BEHIND!

As with you I had 2 grand mals before my surgery and it is how they found my AVM. That was almost 10 years ago. I have since been on almost all of the seizure meds and have accepted that I will be on them for the rest of my life. I can say I hate taking them but I know it is something I have to do. I still get auras from time to time usually accompanied by migraine. I’ve also had the stranges side effects from all the meds. Currently I’m on Trileptal and it seems to be ok for now.
Other than stupid side effects I live a completely normal life, but lets face it I’d rather take pills than not be able to function normally.

Hey. I did not have a craniotomy, but GK. My seizures started immediately post op. No license means LOA from work. Can you tell me what your side effects are from keppra?? My dose is on the rise and I really would like to know if what I’m seeing as side effects is “normal”. Thanks. Steph

I took Kepra and had unusual side effects. Dizziness, irritability and some muscle spasm. Now on Lyrica. Still some dizziness but I can deal with that.
Good Luck!!!

Thanks Allan. My AVM and Gamma makes me dizzy, tired and irritable. I also have muscle weakness and aching on the right side. The Keppra has made me lose my appetite - completely.

My medicine now–Lyrica. The opposite side effect–weight gain. I know… waking up in the morning is an adventure…

I think I would rather have no appetite. I have an MRI on the 5th. They already expect swelling so I am anticipating another new med that will cause weight gain… blah… Everything is happening so much quicker than my research indicated - maybe that means my AVM will also be gone sooner. Here’s hoping. Yes I am definately on an adventure that I didn’t sign up for. Have a great day.

Smile, I wish I didn’t need the Dilantin. I’m stuck with it for good. It was interesting that

it took so long to find out about the “evil”. I was training a friend of mine on how to give a presentation for this Company I worked for. It was the first time training someone. I had a disaster. Instead of going step by step ( A-B-C-D-E-F ) I went A-C-D-B-F-E. and forgetting what I just said. I had been doing this sort of thing for years after the AVM and not knowing it. Until my “Friend” chewed the daylights out of me and said I should see a Dr. So thats why I tell everyone to see their Dr. with all that is going on. Get Follow-ups all the time. I moved out of the State where I had the Surgery and that was my downfall. That is the best advice I can offer. Keep Smiling

Hi Rick…I had my first seizure 2 years after my craniotomy. I’ve beeen on the generic brand of Keppra since my cran. Thinking I could reduce the dose is when I had my first grand mal seizure. So I don’t stop taking the med. I’m going to see a new doctor, a epilepsy doc to see if she can tell me if I always have to take the med or not! Right now, if I take the meds as prescribed, I don’t have seizures. I don’t know if the new doc will order an MRI to see if it’s ok for me to reduce or stop taking the med, but I’ll let you know. Quite frankly, the last thing I was told was that I would have to take the med for the rest of my life. To me that’s OK, if I just don’t have seizures!

I agree with you. I hate all medicines. Specially this-- (Lyrica. Side effects( irritability, dizziness, tiredness, weight gain, loss of concentration)
My feeling is that it is all a conspiracy between the doctors and pharmacists but there is that doubt. Now hearing from you… I think I will definitely keep up with the medication. My anti seizure med is Lyrica. Sure I had seizure after my surgery( Right temporal lobe). After almost a year!!!.
Let me tell you a scary story:
3 yrs. ago midnight had the most painfully torturing headache. Took Tylenol for it then went to see a doctor the next day. Doc sent me to ER asap. Scan showed 4 major bleed. I was a clotter and that saved my life. Had 6 embolization before a walnut size AVM was removed. 6 month of disability, I came back to work. A month later, my rented car smashed head on with an 18 wheeler semi-truck. Based on the facts I told my Neurologist, He said I went into a seizure either G Mall or mild. Hard to say since I lost conciousness after the initial impact. Second life lucky me(only muscle aches from the impact). Neurologist immediately diagnosed—Epilepsy. Mind you, I was not diagnosed by this after surgery but yet he said anyone who goes through brain surgery should be diagnosed as so. This doc was protecting his surgeon because I was not diagnosed after surgery. They were careful I might sue them.

Anyway, I lost me license then later on my employer had to terminate me 'cause my job required a license. I knew better though. I asked for a disability with my Doctor prior to termination. I was a Field Service Engineer and the company I worked for had Disability insurance. I explained that no one in their right mind would hire me or keep me if I keep bouncing into disability on and off. Well, I am still under this insurance which still pays 66% of my salary until I am 65. Currently 53.
Got my license back but I hardly drive. Only in emergency. I sure want to avoid a crash again. I think 3 strikes, I will be out!!! Ha… ha…ha… Anyway, there is a great responsibility here.There is possible injuries for myself and others. Can’t live with that.
Just a word of caution. Take your meds. I was told this meds will be for life.

I wish you all the good things in life and good luck,

I really recommend taking a really good B vitamin like this one.

I got the idea because I craved veggies when first put on keppra, and it really helped. From amazon, it’s $15 for 3 mth suppy and also has high folic acid which is very helathy too! They also include it in their vitamin drink.

I hope you try it out, B vitamins are depleted by stess & life, it should at least help with the tired (which of course, helps the irritable :slight_smile:


Thanks Sharyn. When I was diagnosed I stopped all suppliments. I also eliminated wheat, corn, pork, most dairy following the “Eat Right For Your Blood Type” diet (type O negative). I have never had a bleed and my AVM was discovered by fluke. In theory (my own and some research) is I don’t want to take or do anything that will alter my blood flow. My seizures started after Gamma. My bruit is also louder and has changed it’s pattern. Very odd.
When I see my brain guys and have another MRI next week I’ll ask what their recommendations are. I am also anemic and should be taking iron daily.

I am very interested in what you find out!

Hi. I am a veteran at this. 26 years after my bleed which was huge. Visual deficit, limited driving, (no night driving). Life long seizure disorder. It’s a big adjustment to your life and like you I protested at times and stopped my medication due to cost, fatigue, side effects, etc. But what I have come to learn is that is’t what it is and I take them faithfully every day so that I can have the best quality of life possible. Your alive. Bite the bullett, count your blessings and move on. If your meds aren’t agreeing and I know Keppra is one of the newer ones, aske your neurologist about switching. I have been on 4 different meds since it all began. Good luck to you and hang in there. It will get better. :smiley: I’m like the avm mom at 52 years old. Life is all about change, nothing ever stays the same we just have to learn to roll with the puches. Take Care.

Hey Rick, sorry to hear your pain, its horrible not to be able to drive and all that. I too was on Keppra when released from hospital. I was so spaced out taking that medication I hated it. The doc now has me on Gabapentin 100mg I was on 500 mg but I convinced the doctor to drop my dosage because I never had a seizure before just my AVM removed. Good Luck to you!

I made this post a year ago, so all my questions have been answered at this point, but i’ve been noticing a lot of activity in my inbox from replies to it so i suppose i will update. I was put back on the keppra at a much smaller dose, and started a titration of topamax. had another seizure so was put back on the dose that we know works. I’m used to it by now it has almost been a year for me seizure free! not crazy about taking both keppra and toppamax but it is working and that is all that matters! i was diagnosed with partial onset epilepsy, due to the amount of scar tissue on my temporal lobe, wich is apparently a hot bed for seizure activity. I will be on meds for life, but thats ok with me, i’m able to drive! and work! and be somewhat normal. good luck to everyone else sufferring from these nasty things!

Rick that’s great everything is under control for you. I found out later that I actually had a partial onset epilepsy but never was told about how much scar tissue was on my temporal lobe. Is this something they told you before you left the hospital?