Been a while since I had to come here for anything. Ha! Ok. I'm 3.5 years post bleed and resulting crani. I was told seizures would not be an issue but apparently they are. I take Keppra 1500mg 2x/day. I have staring contests with walls for the most part but every now and then, once every 6 months to a year, my body decides to lock up and foam at the mouth. I've asked er doctors and nurses, neurologists and others who experience seizures questions but their answers don't fit and I don't know anyone who has had a chunk of skull removed that also has seizures :/ SO:
When I have a seizure I can feel it coming, is that normal? I really can't do much other than warn whoever is around me that I'm about to have a seizure. After I warn them it's all up to them and my crappy body what happens next.
Next question; this is what I've asked doctors about and I'm super tired of the shrugging and the most common answer "It's the brain. No one can say for sure." So let me just get some experiences from ya'll please? Afterwards, I have such intense pain where the AVM was removed from. It feels like that piece of skull is being forced out of my head. It makes me physically ill and so confused and distracted that I can't sleep even though my body is exhausted from the seizure. The thing is, and I don't believe them, all my doctors and those I've come into contact with all say the seizures are not related to the crani or the stroke or the (former resident) AVM. How is this possible? I mean, I FEEL IT. The pain is RIGHT THERE WHERE THE AVM WAS. How is it not related? Or at the very least somehow connected? Why would a doctor lie to me? Why won't they say, "hey you've had some damage to that area so yeah, expect a fritz every now and then." Why lie? I do't get it. Has anyone else been told their seizures are not related to the AVM, crani, stroke, or other treatments? Does anyone else feel this similar pain after a seizure? Does anyone else feel them starting before the seizure actually starts?
Hi, kristi, always good to hear from you. It doesn't add up for me either that your docs would insist on the seizures being unrelated. We have so many folks with seizures here from avms or avm-related treatment that we have a large subgroup for those members. (You may want to post this on that group, too.) It is fortunate that you get a warning so you can protect yourself. Some do, and some don't. I hope the members with experiences similar to yours will write in and add their experience.
Later on, I hope you will post about your life in general, and how your cute kids are doing. We miss you here.
I don’t have an answers for you but wanted to let you know I feel for your struggles and hope you find answers soon!
Kristi I'm sorry you're having such trouble. I was told by my neurosurgeon that I couuld possibly experience seizures. He said any time the brain is "touched" or has some form of trauma to it, seizures are possible. So, having an AVM bleed and resulting crani certainly qualifies! I'm very fortunate to not have ever had a seizure and I'm 7 years post bleed/crani. So many others here experience seizures, I would suggest speaking to an epilepsy specialist. Perhaps they could help adjust your meds in an effort to lower your instances of seizures. Best wishes to you.
Ive had seizures for 35 years now post avm bleed and radiosurgery. My dr says its the scarring onthe brain that causes it. This sounds likely for you. See an epilepsy specialist they know best especially as there are so many types of seizures and they see them all. Good luck with finding meds that work for you.
Kristi...Thank you for posting this discussion. Your AVM and my AVM were in the left area of the brain. I'm on Keppra as well, but you are on a higher dose, I take 1,000 mg twice a day. Like you, every six months, sometimes less, I had a seizure.
The seizures I have are called Simple Seizures where I can't think, talk and I feel like I'm going to pass out, but I don't. My neuro epilepsy doctor calls them Simple Seizures. I just saw mine last month. Since I was starting to have one every 3 months, she told me to call her if it continues.
For you, I'm concerned about the pain in the area of your AVM after the seizure. Do you see a seizure specialist, a neuro epilepsy doctor? What the doctors you are seeing does not make sense telling you it is not because of your craniotomy. It certainly does have something to do with the location and the surgery. Therefore, if there is a neuro epilepsy specialist in your area, make an appointment.
Please know I'm here to support you!
I have been taking medication for AVM-related grand mal seizures since 1973. It has changed over time, but is now Epilim ER 1000mg twice a day and Tegretol CR 600mg twice a day. I recently cut down from 1400mg to 1200mg Tegretol each day because I was having balance issues to do with an inner ear problem and my neurologist thought I might be taking too much Tegretol. He says I might cut down the Epilim next year as well but didn't want to do it all at once. He explained that as I age (I'm 60) my body does dot process the medications as effectively, so there is more left over from the previous day's dose than there used to be.
After my post-bleed embolisations I asked my neurologist, who is one of Australia's foremost epilepsy specialists, if I could stop taking the medications. He said there was a possibility the disturbance to the brain would still prompt seizures even though the AVM had effectively been removed. So I had two choices. I could just keep taking the medication or I could stop driving, stop the medication, and if I was still seizure-free after 6 months could start driving again. I kept taking the meds.
It is not at all uncommon to get an "aura" that warns you that a seizure is imminent. This was followed by some jerking down my left side and occasionally hitting the left side of my body on things because I could not judge distances on that side (my AVM was right side parietal, so the left side was affected). I would lie down before I could fall down, then be aware of the seizure coming on before I passed out. I always felt sorry for the people with me because they had to watch, which must have been scary. I had several seizures at work in a newspaper office and once when I was giving a lecture at university, with 200+ students looking on in horror.
I never had the wall-staring "absence" seizures, just the full-on grand mal seizures, locking up and foaming at the mouth as you put it.
But I have been seizure-free now for about 20 years. I look forward to the day when you will be able to say that, too!
Geoff.
I've never heard of a neuro epilepsy doctor! I thought a neurologist was pretty much what that was. Louisa I get those too! I call them white washes because everything turns white, I get like this cool feeling over my skin like a panic attack and I feel like I'm going to pass out but I don't. Usually I can just take a few deep breaths and kind of..."talk myself" out of it. I know they are seizure related because it's the same feeling I get right before I have grand mals. I'm so confused. I feel like my doctors are all lying to me which makes absolutely no sense at all! My bleed was in the right side but I'm affected on the left side of the body still. With the seizures, my right side goes numb and my left side tingles. I almost went to the E.R this last time because the pain was unbearable but my husband had a hydrocodone on hand from a previous injury. It didn't work so I just kept waiting it out and eventually fell asleep somehow. I see my GP in like 3 weeks I guess I'll just find out what he thinks and who or what he may recommend to do. Neurologists in my area are closing their doors and blaming the ACA for "complex changes to paperwork" that is an actual quote. My current neurologist doesnt accept medicaid, my secondary insurance, so I can't just go around willy nilly asking specialists for advice. *sigh* Just what I need another problem in my life related to the damn AVM
I just spent an hour writing you, and my ipad froze. I can’t redo it now, too tired. i had a couple big deizures right befoe the AVM bled, went years taking anti-seizure mmeds, stopped that med, Dilantin, took Carbemazapine another 20 years, just started Kepppra and weaned over a ling time period. i have partial occipital lobe seiures and do jot feel them coming. I feel odd afterwards. They only last a few minutes, show up as streaking and flashing lights and sparks that are white. I am visually impaired legally, but have a small area of clear vision sometimes to the right,
how much keppra do you take. i will write soon,beans
Kristi, once you have brain surgery and with or w/o a bleed, you will have a chance of having seizures. My neuro surgeon said that the chance of me having seizures after surgery would be none to slim. I was having very light seizures before my surgery and after 13 years, i still have them although not as often as when i first got home from the hospital.
I sometimes feel pain on the incision (even now) and especially when it rains or when it is cold. (weird) i have learned how to cope with these. Take plenty or rest. Avoid loud noises, excitement. take enough fluids.
Everytime you have an injury to your brain (be it surgery or bleed or Cancer) there is always that chance of seizures.
Good luck and take care of yourself. God bless.
Hi Kristi,
I am in the UK. I did not have my AVM removed but had the Gamma Knife radiotherapy instead. My neurologist has told me to expect to have to take anti-convulsaants for the rest of my life because the radiotherapy will leave a scar on the brain which is unlikely to repair. I would assume that would be the same for removal of an AVM which must also leave a scar. I have had several seizures since the Gamma Knife but my medication has been increased each time and I have been seizure free for many months now. I am sending you healing thoughts. Martin
Hiya Prissy!
In your response to Kristi, you said that "once you have brain surgery and with or w/o a bleed, you will have a chance of having seizures". While I'm sorry to say I have no info useful to Kristi, I have never had a seizure (before, during, or after) despite my craniotomy (brain surgery) at the end of 2006. But what I find interesting is that I was never told I had any chance of having a seizure either at the time of the surgery or more recently. Were you told this? I am very curious about the statement.
Hmmm... I am now very careful to drink a lot of water (I had a hospitalization a few years back due to dehydration) but perhaps at the time I had a seizure and did not know about it. Either way, thank you for the information and best of luck to you and take care as well. :)
Hi there, I am a mom to a 6,5 year old who suffered a bleed and craniotomy last year. I was told on the very night that the bleed occurred that if my son pulled through that later on in life, he could get fits/seizures due to the scarring on the brain tissue that occurs after the craniotomy. The ICU Paed as well as the Neurologist Paed have said that there is a possibility later on in life, this could happen. Just wanted to share that with you. Good luck!
Hi Kristi,
I too can feel my seizures before they start. I do not feel the pain where I had surgery, however, my entire right side goes numb or dead before, during, and after the seizure. My doctors have all told me that my seizures are directly related to the AVM.
Your reply made me laugh. I hate writing long messages or whatever then finding it didn't post or deleted itself. Aggrivating. I take generic Keppra 1500mg 2x/day. Everytime they try to give me a secondary "booster" med for the Keppra, I have the most awful side effects and can't take them.
See, no one actually told me I would have seizures but my rehab specialitist from my inpat. stay thought it was weird I worried more about playing video games again than I was seizures. No one mentioned it other that one doc that one time. Then after the first grand mal a few months post surgery (craniotomy) they said it most likely wasnt related to the surgery or AVM or damage but probably hormonal because I had a baby like a month or two before that. After the second grand mal they said that because there was no real triggers it was "just a fluke" which they made sound normal for "regular" people and completely ignored the pain I was in at the hospital once they gave me morphine. Then in July I had a seizure and saw my nuero afterward because I skipped the hospital. I asked him about the pain around the piece of skull removed and he shrugged it off like it was no big deal. He said pain is common, no worries but I'm worried in a way because it doesn't feel "normal" even though I have no real idea what normal even is. It really feels like after the seizures my brain wants to reject that one piece of skull.
Yes, I get that too where the feeling is just gone. I'm affected on the left side and already have minimal feeling but this is complete lack of feeling and the right side tingles which freaks me out! Why does everyone get told their seizures are directly related and my docs are like "Mayhap it is, mayhap it isn't!" (that was Mother Abigail from the Stand lol). I kind of get the feeling doctors just don't want to deal with me because I have so many questions and my mind is so technical I need full answers, not half ass ones. I'm not dandruff, don't brush me off, stupid doctors :/
Hi Kristi, Sorry you are going through this and feel so alone. Absolutely I can feel with you, and i can assure you YOU are not alone. I too feel the seizure coming on and i am able to warm other's of that. My Nuerologist assure's me I have now since my AVM has caused so many seizure's that Epilepsy is the result from all the seizure's and the AVM is the main cause. So with that in mind I would go seek further advice. I get severe headaches and I am maxed out on pills (Keppra, and Topirimate) to help cope with the seizure attacks from the pressure they cause, I sleep alot, i have lost 15%of my speech, and cannot risk many more seizure's, as each one of them seem to damage something, my Nuerologist has mentioned the it may even bring on a stroke and certainly she does not want that, so that is why she is going and attacking it from the headache and seizure avenue's as she is not risking it. My headaches have gone from severe to mild in doing so. Hope this helps you. Hope you find someone to help you.
Hi, Suzy! I know. They kind of hold that info from you to prevent the power of suggestion. But in my case, I was already having light seizures before my surgery. (Which I didn't know at first they were seizures.) It was my neurologist who actually told me they were.
But for any brain injury or surgery for that matter, your chance of having a seizure due to that is from 0-slim, but I would like to say 0 to moderate, really. It is how to recognize them. Most of all, the location and the extent of your AVM plays a vital role in determining whether you are at risk for developing seizures or not.
Thanks for your input and your prayers. I think it is necessary that we keep on supporting and praying for each other. Take care and God Bless.
Kristi, you get white washes, I used to get greenish brown like wearing your sunglasses except you're inside a room! And I also get that aura feeling whenever I have seizures too. Sometimes I don't realize I had one until I notice that I am breathing so slow and heavy and my right arm is getting slightly stiff. Then I feel so tired and sleepy afterwards.
I also get headaches too. Narcotics only make it worse after the effects wore off. The only medicine I take for the headaches is Advil or Tylenol but most of all, I put cold compress o r ice pack to the affected part of my head and I t works wonderfully.
Sometimes your seizure medication can cause those headaches too. Well, I wish you the best and take care. Remember, you are not alone. We're here for you.