thanks Darlene and Sue for the explanation of the Wada test.

i don't have insurance so I'm sure they son't do that. Sue, that is amazing that they could pinpoint the exact reason why you have seizures. i would be happy if they could figure out where in the brain mine are starting and actually have some proof of them. No doctors have ever seen them but in November of 2011 I had a status episode from not being able to get one of my meds. I had over 26 seizures in a little over an hour and had to be airlifted to UMC in Tucson. Needless to say the ER docs did bloodwork and a chest xray to rule out pneumonia or infection I guess. and it all came back fine so they decided it was from no having the med for a week and two nights of not sleeping before the seizures started. they had given me two shots of valium and the helicopter crew gave me some ativan all in my IV. They sent me home after 6 hours. Home is one and a half hours SW of Tucson in a tiny town near the border which is why they had to airlift me out.

I haven't actually had a neurologist for years since I moved here from Rochester MN. and then I never had just one neurologist. I went to Mayo and they jumped me around to whoever was available. And I had several bad experiences at Mayo some due to the seizures and some due to the FMS. they are really good at some things and not so good at others. the reason i was there in the first place was because my ex(divorced in 2002) is a surgeon there. He divorced me because of the FMS. Said he didn't believe it was a real illness and that he believed it to be a form of depression. We were married 18&1/2 yrs(actually divorce was final on our 19th anniversary) and we have 3 children who are all adults now the youngest is 20.

I have a referral to see a neurologist from the epilepsy center at UMC. I know of several women in our town who see this one woman neurologist and really like her so I'm hoping I can see her and have her as my neuro. I have had so many neurologists in my life and of all of them only 2 were really good. One was in Mpls. and he is now retired, and one was at Yale university. he was quirky but good at what he did. and they both never doubted for an instance that I have a seizure disorder. i have had so many bad experiences starting as a child.

I have had so many changes since I had the status episode. Many memory problems like of course short term memory stuff which I have had in the past from concussions, and in 2002 I admitted myself to the Psych ward for depression after trying to go off my antidepressant thinking my depression was all caused by my ex:P and when I realized I still needed it it no longer worked and I got very depressed and suicidal. I was there for almost 3 weeks and they kept trying new meds and of course it takes at least 6 weeks for the meds to build up in your body and work for you but I couldn't stay there 6 weeks so they pushed me into getting ECT(Electro convulsive therapy) basically shock treatments. I was not in a state where I should have been even been asked to make that decision but anyway I forgot about the seizures as the depression was so bad and I couldn't think about much of anything, so I had three ECT treatments they wanted me to come back after being discharged for 3 more but they were so horrible I cancelled them. and less than 2 weeks later i began to have more seizures after not having them for several years. These were different at first they happened only when I was laying down and asleep or going to sleep and they escalated to daytime GM seizures. they couldn't find anything on the EEg again and did another VEEG with the electrodes just on top of my head and nothing showed and I didn't have any seizures. Mine have always been pretty sporadic but mainly around my period, usually just before etc.


so my regular doc doesn't want to mess with my seizure meds as he doesn't feel qualified (I don't blame him) so now I will see another neuro and am hoping for a good one this time. I now live alone after an 8 year relationship and after the status episode was so worried about being alone that I was even thinking about maybe trying to get a seizure dog. But I already have a little dog(who actually has seizures in her sleep, kind of ironic) and am not sure if they would get along plus it would be more work for me and with also havig FMS and several other chronic illnesses autoimmune stuff that taking care of one more thing would be difficult for me.

i was going to say that some of the strange things that I forget daily are to eat, sometimes to even drink water and sometimes to bathe. I have never had this problem before. I do need to lose weight and have lost about 15 pounds since Aug. but it's not the best way to do it. and I know my brain needs to heal from the seizures and eating small meals frequently as well as getting enough sleep is important. the other weird thing is that my days and nights are totally mixed up. Which has never happened before.

I'm wondering if any of you have had any of these problems after having seizures, especially if any of you have experienced a status episode?

thanks for being so prompt in explaining the wada test to me. I have done some reading and they are trying to find less invasive tests to get the same results. I hope they do continue to learn more about seizures and the brain in general because it seems to me that they have really only scratched the surface of what there is to know at this point!

Take care,
Sara

P.S. sorry for another long post, I can't seem to get them shorter.

Hi Sara,

I went through status sz. (seizures) when I was put on neurontin for a concussion. Then I later found out that neurontin can cause sz. for some people and that the drug co. making the drug ended up with $240 million in lawsuits. Once I went off the drug the status sz. stopped.

The main thing that can cause epilepsy. are: difficulty at birth, brain injury, lack of oxygen, drug or alcohol abuse, brain tumors, family genetics,trauma or a bad scare. Also MS (mulitple scoloris) sp? and other neurology disorder can lead to sz. as well as diabetes that isn't under control.

I'm sorry to hear about your and your ex my parents were together for almost 42 yrs. and they got a divorce which led to a lot of stress for me and that in turn triggered sz. (seizures) which caused more brain damage.

Depression is all a part of having epilepsy sometimes people want to end their life and that's part of the depression as well as the sz. med they are taking that's causing this. Often a person will have short term memory problems and that's because the hippocampus has shrunk and gotten harder from yrs. of having sz. When I had my last brain surgery the Dr. removed my right hippocampus because it was very hard and damaged from yrs. of sz.
Sz. med can cause weight loss when I was taking Depakene I lost 75 lbs. in 4 months. The drug can cause anorexia where a person either wants to eat or doesn't feel like eating. I take the drug Diamox, and that drug curbs my appetite now. I also take mysoline and vimpat.

You might want to try the ketogenic diet this diet is for people with epilepsy the diet builds up ketones in a persons system and this helps reduce or stop sz. You can see a dietician about this diet and get the book titled "The Epilepsy Diet Treatment" By Dr. John Freeman. The diet is high in fat but low in carbs and starch foods. It has been a big help to me along with taking vitamin B12 once a day. Stay away from nutra sweet because this can trigger sz. for people and cut back on caffeine.
Wishing You The best of Luck and May God Bless You!

Sue

Sara,

I didn't have doctors in my young age help me out. I started have seizures when I was 10. I started in 2000 with a neuro then and he seemed to help me out more by changing my medicine and it help some. When I was a baby I fell over and hit the back of my head causing a scar on my brain. My neuro sent me to see an Epileptologist, which he did more testing on me. After the testing I went though he decided I was a good patient for this procedure. Since this I have not had one. I believe like in medicine something it works and sometimes it may not.

As you said you are close to a UMC, I would go there and have the testing done. The medical center I went to is the one located in Dallas Texas. I don't regret doing to this surgery. My scar was located on my long term memory side, but then again my short term memory was good. The medical staff discovered that with the Wada test.

Keep us up to date. My thought and prayers are with you.

Darlene

thank-you again both Sue and Darlene for telling me a little more about your experiences. I have an appt. now set up in March to see a neuro from the epilepsy center at UMC in Tucson. several women I know have said she is good.
My biggest worry is that I have no insurance so I have to pay for the appt, up front. i can do it by March but I have so many bills from my status episode especially the helicopter bill--it's $7,000! they were kind enough to take 2/3's off the first bill but still that is a lot and I will be able to make payments which will help. the lady who made my appt said that any procedure that is done i will be billed for so I will just have to make payments on those as I don't have any money saved. i have had too many hospital bills in the past few years due to my asthma. the reason I don't have a neuro right now is because i am a self pay and just could never afford it. Plus, I was doing pretty well the past several years. it had been 3 years since I had a seizure and I had even just bought a truck and was driving again. sigh. I haven't even been able to get the truck registered because I got sick and then this happened.

I'm hoping that because it was due to not having one of my seizure meds for a week that the neuro will allow me to drive again. i'm sure she will have to do some tests first though to make sure. One thing on my side is that my seizures have only shown up on one EEG in my life and that was back when I was 13 years old. It is difficult for me because i live in a tiny town near the border. i have friends who can drive me to the post office etc. but I hate being such a bother to them. My doc did say I can drive a golf cart so I'm looking into getting a used one. It would of course only be here in town. so I could get to the store or the post office or the gallery where I'm supposed to work 2 days a month but haven't been able to since I had the status episode in Nov. which happened to be at the gallery during a meeting. i am an artist so this has also made painting difficult as I seem to need a lot of sleep since this happened and I moved to a new house less than a month after it happend so i'm slowly trying to get things unpacked and set up. moving causes me stress so i'm flaring with my other illnesses like my FMS so I haven't been able to paint much. But I just got into the studio yesterday9there is a room on this house I can use for a studio so I don't have to go anywhere, which is one reason I moved!

anyway, it is good to know what others are doing for their seizures even if it might not be feasable for me or practical as we are all individuals in what we need to do. but it sure is nice talking to others who have gone through some of the same experiences. So I wanted to thank you guys for responding to my messages.

Take care,
Sara

Hi Sara,

I know how you feel not being able to drive I've had seizures most of my life and I was never able to get my drivers license. I was lucky to have family to take me back and forth to work but I made sure I paid them. If you need help you might want to call the Epilepsy Foundation of America they are located in Maryland and here's their phone number 1-800-332-1000. They may be able to give you info. in regards to getting the financial help that you need to take care of things to see any neuro and they can also give you any advice if you have any questions for them regarding stroke and epilepsy. You might have a local Epilepsy Center or Support group near you and they can tell you if you do.
Wishing you well and May God Bless You!

Sue

I too have never driven a car. I am very lucky to have a wonderful DH, who is always there for me.

As Sue said check in with the Epilepsy Foundation of America for some assistance. You might also look in the following form for some assistance. Hopefully you can find some help there.

http://neurotalk.psychcentral.com/forum28.html

Please keep us up to date. My thought and prayers are with you.

Darlene

Sue and Darlene thanks you for the information.
I have the info for he epilepsy foundation written down and i will go to the link you provided Darlene. just wanted you guys to know that I did read your posts and wanted to thank you for taking the time to respond to me

Sara

I had my first seizure at 51..i thought it was because i cut a wellbutrin in half for two days weaning myself off....but then EEG showed spike and wave pattern of absence seizures that they said was genetic. So they had me on keppra...couldn't drive for six months..then i had another seizure out of nowhere about 2 years later..a week after i left my husband..I think hormones..specifically low progesterone is one culprit, stress, low on magnesium, full moon or last quarter of the moon and dehydration are others so..i drink powerade..they doubled my keppra but i am so tired, so depressed, never want to be alone...my medical bills are huge cause of these two seizures..i have now instructed my 15 year old not to call 911. It makes me not want to deal with things..I just want to lie around and rest.

Hi Ambrteach,

I know how you feel. I have had seizures since i was 12 at least that is the first time that i was unconscious with them. I really think I may have had them since early childhood. I had problems in school where everyone would know what they were supposed to do for a certain thing that was taught and I had never heard of it before. just one example was long division. everyone in my class knew what the teacher was talking about and I had never heard her talking about it. this happened on a fairly regular basis and I was too scared to tell anyone because i thought they would think I was crazy. I didn't know anything about seizures or even the word until I started having grand mal seizures in 6th grade. I was hospitalized for a week while they did all the tests at that time. Back then They did EEG's which were very painful as they didn't "glue" the electrodes to you head like they do now back then they stuck them into you scalp. I would end up with about 35 scabs on my head and they alwasys told me oh we don't pierce the skin-right!
Anyway, I have only had one EEG that showed seizure activity and that was when I was 13 so I was put on dilantin back then and was on it until i was 18 at which time they decided I didn't have epilepsy so i was weaned off the drugs and IO didn't ave any seizures for about 4 years and then had my first complex partial seizure when I was pregnant with my first child. I have three adult kids now and i believe I only had seizures with the first pregnancy. So, i had my babies in the 80's and early 90'slast one was in '91. In '93 I was under a lot of stress. i was trying to take one class at the University(I never finished college) and that didn't work out and I was just all over the place driving my kids to all of their activities and working a job partly from home nd partly from the clinic that was a 45 minute drive away always in rush ohour traffic. then the kicker was my husband who was a Surgical Resident and had promised me he would go into private practice and stay in Mpls. where we lived, decided to take a job at Yale University in New Haven CT. We were having marital problems and I was having seizures by then and also broke out in a rash head to toe and it ended up being from strep and depakote which I was on for the seizures. I had it for more than 6 months and my husband would not touch me. i felt like a leper. if I went out people would stare as it was all over my face and scalp and arms, legs, everywhere. so I covered up as best I could and was finally taken off the seizure med. My neurologist said the rash was worse than the seizures.
this is sort of a synopsis of part of my life and I did get depressed especially when I couldn't drive. I have been on and off driving since I first got my licence when I was 18.

Currently I can't drive and in Nov. had a status seizure where I had over 26 seizures in over an hour and was air lifted to a hospital in Tucson. I now have more medical bills so I can empathize with you as I have no insurance and have racked up the medical bills over the past 3-4 years. It is stressful. i was late paying on one bill by 30 days and only made a partial payment as I can't afford to pay them all at once and I already got a call from a debt collector on that one! It's crazy. It's stressful and yes it can be depressing.

Sorry for the long story. i want you to know you aren't a lone and that there are so many more people out there in similar situations. i was never afraid to be alone and never afraid to go out in public. i have been lucky in that everyone who has witnessed a seizure and I had them in school from 6th grade through senior year and then now in my life everyone has been so good about it and they accept me for me.

After the status incident in Nov. I was afraid to be alone for the first time. I was married for 19 years and my husband divorced me because I have fibromyalgia and he doesn't believe it exists he also thought that I didn't "really" have a seizure disorder and he's a doctor! But then I was with my boyfriend for 8 years and he was very good about the seizures. they increased a lot when I was with him because of some incidents that brought more on. And he accepted them and was just very good about it. he could tell before I had one and usually was able to get me somewhere safe to have it. but, he broke up with me about 2 years ago now so I have been alone. but last year i lived in Mpls. where I have friends and most of my family lives there.

i decided to move back to AZ to a little town that I have loved since I first came down here in 2005. i lived here first with my boyfriend but have many friends here and they have all been wonderful. You would be amazed at how many people just accept it and still care and don't care that you have seizures. i am. i have a pretty full life. I do have major fatigue and pain from the fibro., and arthritis, so I have to take a nap everyday but I am an artist and painting feeds my soul. I began painting after my divorce in 2002 as a kind of therapy. I am self taught but have read lots of books. for me this has been the best thing. If you can find some kind of creative outlet that helps you feel better about yourself it might help. Or maybe take a fun class with community education. An art class or writing or whatever you might be interested in. there are so many different things out there that you could try, and then you will meet people too, and make some friends. Maybe join a book club. just something to get you interested and maybe meet some friend and get out of the house. i know you can't drive but do you have a bus system or friends that would be willing to drive you? Or maybe you could call a local church and see if they have volunteers that drive people who can't drive to get out and about.

i'm just trying to give you some suggestions. it sounds like you are depressed and maybe you should talk to your doctor about that. It sounds like you were on an antidepressant before the seizures started so maybe they need to change your meds or change the dose. It might be good to find a support group for epilepsy. I know some of the people here have more suggestions too. just know that you are not alone. i just turned 50 myself and had gone 3 years without any seizures. but i was unable to get one of my seizure meds for a week which led to the status seizures. I try not to dwell on the bad stuff as there will always be obstacles for any of us to overcome. but thee are many things we can do. and there are groups online just like this one where you can meet people just like you and help you in any way we know how. You have come to the right place and I hope you can get the help you need so that you can enjoy your life again.

Take care, there are a lot of people here who care

Sara

ambrteach,

Hello and welcome, happy to see you have come to be with us, it a great place to be for a supportive and relaxing place. Our shoulders are here for support in many ways.

I have had epilepsy ever since I was 10 and now I am 58. So I just feel it is part of live. I did have surgery in 2009 and have not had another one since and it really feels good, but since I had it in early life I just lived with it and found out who was my friends. My DH has always stood right beside me and so has our children.

Back when I was having them I wood have them a few days before my period, so I knew when it was coming. Most of them accorded in the summer time, everyone is different.

Some of the many these to do is, always stay away from flashing lights as in a theater, take Vitamin B complex, nutra sweet (aspartame) which causes more electrical activity.

Hope I have help you out. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene