Hello everyone !! I must say as I have lurked in the corners of this forum for the last month, I have learned a tremendous amount, but have also been left with many unanswered questions. Before I continue I want everyone to know that due to insurance issues I am currently unable to see a nuero, and my former nuero surgeon will not treat me any longer.

With that said, I would like to give everyone a history ( I will try to keep it brief) In May of 2006 I experienced (to my knowledge) my first gm seizures. There were two which landed me in the emergency room, and the nuerologist came back with a diagnosis of Arteriovenous Malformation. Without going into it to deep, we opted for a traditional craniotonomy after emobolzation. It was completed by July 2006. I was taking dilantin at that time 100 mg. The doctors indicated the surgery could not have went better the avm was gone, and that I would always be at risk for seizures but good chance I would never experience another. I blindly believed them. I opted to quit taking my dilantin when the prescription ran out, (how stupid I realize now) and was seizure free for 17 months. I even got pregnant and had my sixth child....(another Huge mistake given my medical condition, but NO doctor ever told me this was not a good idea.) The delivery was awful, as they would not let me participate for fear of a brain hemorage, and my husband and myself argued, the avm is gone, there is no risk...HOW uninformed we were. The baby arrived 11-10-07...healthy and exhausted. we went home, feeling fantastic, and the first week with him was wonderful..(fyi, i was breastfeeding, still no dr spoke up and warned me of anything) The Saturday after we got home, I developed this unreal headache pounding pressure right in my forehead..I was in agony. Worst headache ever. I went to bed and the same headache woke me up at 11 am on sunday. I got up and got on the computer to do my homework for my college class...and according to my odest son was very distracted and cranky. I was trying to work on my homework, and it was not going well, and suddenly I felt that rising feeling in the pit of my stomach, that I felt briefly 17 months prior. The next thing I know, I am climbing up in bed with my husband and one week old baby, saying I think I just had a seizure. Then I fell asleep. At some point I had someone get me the laptop, and I typed in tonic clonic seizures, like I was actually going to be able to make sense of what I was attempting to read. I called my neighbor trying to make sense of what was happening, as I had no idea about the time frame, nor what day it was. I called my mom, and told her to come to my house as soon as possible, b/c I was having seizures. At this point I was in tears, and my husband had gotten done with his shower, and I looked at him, and in a very serious voice told him I am definite getting ready to have another seizure. Apparently I was holding my infant, but I was sitting in the middle of my bed, I fell over to the side, and the baby slid down between my legs. To make a long story short, the baby was fine, and I ended up in the hospital, and the medical professionals recorded six grand mal seizures. I dont remember any of it. Nothing. In fact, I was paralyzed for the next 2 and a half days on my right side, and resembled a stroke victim more than a seizure suffer slurred incoherent speech, and the drooping face, and then wed, i started to recover. I came home on Thanksgiving day, and still there are so many holes in my memory. I have to ask the same questions over and over, bc i dont remember asking the questions nor the answers. I cant find the right words, I am suffering from severe to very mild headaches. Poor balance, and when I lay down sometimes the world just spins, eyes open or shut. At any rate, I have been doing a lot of research and realize I have possibly had alot of warning signs, which I will discuss in a separte post as this one is getting quite long. However, my nuerosurgeon at least had another mri done for me and told me everything looked the same as it did after my surgery, including the tumor. Which he NEVER told me about. It is a 1 cm meningioma on the same side as the avm (which he removed)and is not in the actual brain tissue nor is it pressing on it so he says. My question is why didnt he take it out when he did the avm surgery?? Im a little p/o about that.

I Am open to any suggestions, comments or anything anyone has to say...and I will be posting more about my situation in the next few days, ecspecially about previous and current symptoms. I am wondering if it is possible I have been having some kind of seizure for years and not just realizing it.

I hope to make friends and be just as supportive as hope you all will be..
THanks for your time...
Amanda

No real advice for you except to say that in regards to children, most women with epilepsy have perfectly normal and healthy babies-- even on medication, and the descion on whether or not to breastfeed depends on many factors. There are also many things one can do to lesson the chance and risks of a baby being injured or hurt when a caregiver has epilepsy. I am the Godmother to a silly, funny 19 mo old boy with special needs and have been caring for him since he was very young. The precautions I take are fairly simple : having a "safe" place to put the baby if you feel seizurey or just "off"-- when E was younger theese things were a car seat, swing, bouncer etc. Now that he is a toddler it is bit more complicated, but usually just involves baby proofing a specific area of the room or having a pack N play set up. Some other safety things include holding the baby while sitting if you feel uncomfortable holding/walking around with him/her. The only real "rules" my neurologist has for me is that I have to change him on the floor--vs a table; and no bathing the baby alone. A soloution to that is taking the baby in a carrier or secure seat with you into the shower with you. Theese things just greatly lower the risk of having the baby get hurt should I (or anyone) have a seizure. I *think* I was the one who was more worried about taking care of him alone than his parents, lol. But, I soon became comfortable with it-- especially with precautions in place. The most nerwracking thing with taking care of him now is was working his feeding tube and pump when he first got it; and now figuring out the ins and outs of new tubes and pumps and the various alarms, lol.

My DH and I are currently trying for a baby --- I am on multiple meds, with frequent seizures, and we both extremely excited.

Med wise--- I hope you are able to get back on your medication soon and are able to find a neurologist to help you. One thing you might consider is looking into the patient assistance programs that many drug manufactures have for people who need financial assistance for meds and, as far as doctors go, you might try calling your local epilepsy affilaite and see what they suggest.

Good Luck and hang in there !

L2L

Thanks for the advice about caring for my new baby...and I hope you are blessed soon. I dont bathe him alone, in fact im somewhat scared to shower by myself, and I only carry him when I feel ok to do it. I definitely dont carry him when im really tired. I still worry though being alone with him all day long. I dont drive since these last seizures, simply bc I dont want anything to happen to my own children let alone someone else, and I am back on 300 mg of dilantin. Hopefully that will keep on working. My older kids know what to do if I have a seizure when they are home alone with me, we have rehearsed an emergency plan and they all have different jobs....they seem to understand quite well.

I have noticed a lot of people talking about off days, or feeling like it might be a seizure day. To be quite honest, since i had the first two seizures in 06, I dont think I have ever felt quite like I did prior. But could you describe some of the feelings both emotional and pyhsical that you experience on these days ???

Mamaof6,

Sorry to hear of your situation. I have had epilepsy for over 40 years, and have 2 kids. My first one I had no problems. With the 2nd one about six weeks before given birth had a grand Mal was taken to ER and stayed over night for observation. They released me and increased my medicine, Dilation, Mysoline and meberal. Then a long come our son a month a head of time but everything was find, but at this time I was over loaded on medicine and was seeing everything in multiples. My doctors told me no other kids because it may be harmful.

I never did breast feed because I had learned early in life it could cause problems.

Hopefully you will recieve some help from your doctor and some assist with insurance.

Try taking it easy and one day at a time. You are in my prayers.

Darlene

Hi Mamaof6,
Welcome to the forum! I'm so sorry to hear everything that you've been through. I've had absence (petit mal), complex partial, and simple partial seizures for 35 yrs. I also had 2 brain surgeries to help reduce my seizures.
The tumor could be causing your seizures not to mention hormones changing each month. If you haven't started doing this get a calendar and write down what time you have any seizures along with a discription of the seizure. Also take note when you start and stop your period. By doing this you may see a pattern as to what time of day/night or what days of the month you are more likely to have any seizures. I always have 2-3 days of seizures when the hormones are changing in my body right before my period and then again after my period.
Try taking vitamin B12 1000 mcg. I have found that this vitamin helps calm the nerves down and has reduced my seizures.
The nervous feeling you are getting in your stomach is known as a aura seizure the moment this starts try tightening up all the muscles in your body and make your hands into tight fists by doing this it may stop the seizure. My neuro. taught me this back in the 1970's. Stay away from nutra sweet ex. diet soda, it's been proven that nutra sweet causes more electrical activity in the brain and can cause seizures. You might want to try going on the ketogenic diet to help stop your seizures. The diet has been out since 1927 and it works great stopping seizures. I have a cousin that had grand mal seizures and was on the diet during WWII and he flew airplanes and never had a single seizure until he went off the diet.
Check out these websites for more info.

www.epilepsy.com

http://www.neuropat.dote.hu/neurology.htm
When the main page comes up click on epilepsy

Here's wishing you the best of luck and May God Bless You!

Sue

Sorry its taken me a little while to get back to you....

To answer your question about how I know I am having an "off" day-- well, honestly, its hard to describe. Please forgive me if you have already mentioned this, but there are many the factors that come into play--at least for me, and things that sort of give me an idea of what is normal and what is not. Honestly, most of the "knowing your body" is just about time and experience. So, I guess my questions to you are-- how long have you had seizures, what types, how your meds make you feel and what not. Theese questions are not something you have to answer on the forums, but more just to think about. It can often take a lot of time to get to know your body and patience and experiencing things-- so, if you are fairly new to the journey, you may not-- and that is completely OK. To give you some insight on me-- I have very frequent seizures-- some where I loose awareness, some where I do not, have been on meds for a long time-- and most of my current ones at least a year, and have been dealing with the epilepsy stuff for 14 years. It took a good while to figure out my "norm" --- med side effects, etc and not norm-- my "off days".

Now that I have thoroughly confused you, some of my signs it is an off day is dizziness/ataxia that is unlike med side effects, feeling spacey, missing parts of conversations and being in my own little world per say. I also have auras which preceed my seizures which usually consist of at least funny feeling in my stomache and can occur for hours to minutes to seconds before the seizure, so that is my "warning" sign to be careful and/or take special precautions.

(Do keep in mind though, that not everyone has auras)

That is not to say my life is put on hold during my off days, but rather I just take extra steps when doing my every day things-- whether it be having a friend with me when I excersise or do other active things; babyproofing thinsg when I am babysitting, or if I am alone not taking baths (but rather showers instead), using the stove and other such things.

Hang in there !
L2L

Hi and while I'm excited to welcome you here, it's always something that makes me sad someone else has to come here. I am sure you will gather tons of information as well as support (which helps out a lot) during your stay here.

I can understand the insurance issue as I'm currently having problems with that myself, and actually (ironically) have been out of work since my last big seizure in May of '06!

In many cases, including my own, being 'newly' diagnosed - it seems the more you learn the more you realize this may have been going on a lot longer than what you originally though. I overlooked many symptoms and took them as aging, having 'brain farts' and other things. Heck, I didn't even know the dangers of frequent cluster headaches and/or migraines. I just learned yesterday treating my headaches with caffeine is bad (it's not a seizure trigger for me).

All I can suggest right now until learning more about you (which I hope to), is while you're not insured or under insured maybe you can try some of the more natural approaches or try the diets other sufferers have tried to control seizures. That hasn't worked for me personally, but many people will stand by the keto diet, gluten free and some other natural things. You should also keep a seizure journal and even when you just feel 'funny' put that in your journal. You want to always write down what you did up to an hour before your seizure (what you ate, if you were watching tv, working out, etc.) as this may assist you in finding seizure triggers so that you can avoid them when able. If you check your journal and see you had for example, soda within 15 minutes of your seizures several times - try to eliminate soda and see how it goes (or coffee, tea, using the computer or whatever it was).

My doctor said up to an hour because of foods, and 15 minutes for everything else. Some doctors may use other times. I just use an hour for everything.

Some additional journal tips and epilepsy information can be found in this thread:
http://neurotalk.psychcentral.com/thread198.html

Keep your head up and stay safe!

You all have been very helpful and reassuring I must say. I really appreciate what you all do. Thank you very much for your replies, and I pray that you all do not get tired of answering my questions..lol. I spend a good deal online researching lately, and if I find any interesting info I will definitely share it with you all. Again thanks for your time!!

Deepest regards:
Amanda