I have recently been diagnosed with complex partial seizures, and am taking Dilantin for the time being. The doctor thinks that it started after a bad concussion that I had (I had one gran mal, then these started quite some time later). I had no idea what was going on with me, and had no idea this type of seizure even existed. I thought I was going crazy! I have tried explaining to my boyfriend and family exactly what they feel like, but it's hard for someone that doesn't have them to understand. Even though I do not like the thought of taking seizure medication, I am just glad they have been diagnosed and can be controlled. They usually come every 3-4 weeks, and I have about 7-10 a day, and they last about three days. I would love to hear from anyone else that has these and what they go through. I would have one out of the blue and it would physically do something to me as well as mentally (hallucinations, vivid dejavu) and then afterwards extreme exhaustion, nausea, etc. Thank you so much!

Hi - my 18 year old daughter has complex partials as well as tonic clonic. I can tell you that the complex partials sometime wear her out more than the tonic - clonic. They are an exhausting seizure. After heaving alot of them - she gets migrain headaches as well. She is developmentally delayed so this is just what we have seen........thinking of you........Paula

Hi.My brother has all 3 types of seizures.The types he gets are called convulsive or generalized seizures known as gran mal.When he gets this type he usually falls to the ground and moves all over, sometimes up to 7minutes and he moans.

2nd type is absent seizure where he is in la la land.You can talk to him,but is zoned out in another world for about 10seconds and doesn't recall anything you said to him.Kind of like concetrating on something hard and not hearing a word.

3rd type is complex partial.My brother will chew on his lips,or itch his hands and not even realize he's doing it but is seizure activity ready to happen.It starts on one side of his brain and spreads to the other.

So as I've learned from the epilepsy society,my brother has seizures every day of his life and doesn't know it's happening.He may not have the "big"one happen all the time,but has mild ones every day.I've only seen my brother have the "big"one once,and it made me scared and helpless.But I do and have seen him have his "small"ones all the time.I think that people that don't have epilepsy should be aware of what's going on and how to handle it,because for someone that's never seen one,can get quite emotional.

My brother will get seizures if he plays video games because there's too much brain activity going back and forth.
He gets them if he sees flashing lights,whether it be an ambulance,firetruck,police,or strobe lights.
By being on the computer and concentrating very hard.
He doesn't drive anymore because he's totalled 7 cars in 2 yrs. due to his gran mal seizures.Complete loss of driving.
Sun stroke can cause him also to have a seizure.

How long since you were diagnosed & on dilantin? You say you have frequent seizures. Sounds like if you have been on dilantin for some time & still " flop" often it might be wise to get a better drug. Obviously dilantin is not doing the trick.

I literally have been trying for months to get to a neurologist. I made notes of everything that I can remember after they happen and the symptoms afterwards (i.e. memory loss, extreme fatigue, nausea, loss of muscle control, confusion lasts for about 30-45 minutes. During the seizure, I will play with my hands or pull my hair, I don't lose consciousness, but lose all grasp of my surroundings and have no idea where I am and have almost a paranoia feeling (this lasts for about 30 seconds). It's almost like a strange movie in my head going on during the seizure...It's also an intense dejavu feeling, but I can't remember any details really afterwards. My insurance requires a referral from my PCP and it has taken forever. They finally referred me to a neurologist after many phone calls and several visits to my PCP and the neurologist turned out to be someone who only treated headache patients, nothing else. I started having them one day again, and had roughly seven in a 6 hour period and my boyfriend took me to the emergency room this time. I was still in a state of confusion and couldn't remember what day it was (about 15 minutes after my last one). They admitted me in and I was finally able to work with the neurologist on call. They put me on Dilantin immediately that evening and I was on 1500 milligrams in a twelve hour period. I still had some the next day (about 7 and then roughly 25-30 "small ones" where I would just feel the sinking feeling and kind of zone out to my surroundings, not as intense as they can be). They did a tremendous amount of blood work and said my white blood cell count was extremely high which was normal after having seizures. The neurologist calls it complex partial and temporal lobe seizures. I am hoping that the Dilantin will wipe them out, although I am not enjoying the Dilantin! (I have been on it for two weeks, 300 mg a day, for two weeks, and am still having trouble adjusting to the exhaustion and dizziness. I go back to the neurologist next week (FINALLY able to get a referral by changing my PCP!) and am hoping to see the different seizure medications available. I truly appreciate everyone's imput, this is all pretty new to me!

Don't you just love how those referrals always get caught in the "going out" pile?
Dilantin is always the first drug they try. It's terrible for memory & always keeps you tired.
If you have only been on it for a couple of weeks though, that's expected. It will take time to adjust to any new drug. If you read past messages you'll see that some people love it & others don't. You'll see that in every drug, so hopefully your neuro. will work w/ you until you're satisfied & under control.
Keep taking notes of your episodes & drill that neuro. with them. Good Luck!

WOW Amy,

What you describe is me EXACTLY!!! I have CPS and SPS and I to would have 20-30 SPS a day and up to 2 PCS a day for a few days and then I would have one about every 3 days. All of that was happening for a while.

Before I knew what was happening to me I thought I was going crazy. I would have hallucinations(sp?)and deja vus daily, several times a day. I would be driving and get one. I would pull over and start praying for someone to take this away from me. I would cry and cry because my deja vus are accomanied by extreem fear. I get panic stricken and deathly affraid...of what I don't know. I would keep this all from my family. I didn't want to tell them for fear that they would think I was going nuts. I thought they were anxiety attacks because all of this happened after some really stressful times in my life. When the stress was gone, they kept coming. I didn't understand it. I was in a job interview after about 8 months of the deja vus and hallucinations, I was speaking to the woman doing the interview and telling her about how I was qualified for the job when the feeling struck. I had a REALLY BAD deja vu and I went pale and started sweating a cold sweat. I kept my cool and went on like nothing was happening. She was asking me a question and the next thing I knew I was half way across the parking lot heading for my car. I FREAKED OUT!! I didn't remember anything at all!! I was drunk feeling and confused. I didn't know where I was at first and why I was there. After about 15 min. I figured out where I was and what I was doing there and then I cried. I went home like nothing happened again!!! I had another while I was driving my parents home from our house (my mom is blind). I had the BAD deja vu again and I kept it a secret AGAIN. I went out in the middle of a turn and from what they tell me I told my mother that I didn't know where I was going or what I was doing. She panicked and told me to pull over. I did but was still half way in the street. My husband got out of the car and helped me get the car all the way over and helped me to turn down the street I was blocking. When I came to I didn't know where I was again. I had the same confusion and drunk feeling. That was enough to send me to the hospital.

Like you, I didn't even know these seizures existed. I thought seizures were the gran mal type only. I didn't know. I was so shocked.

I am now on Neurontin. It is a great medication!!! I only have the sleepy side effect and that went away in about 2 weeks. It is the most "natural" medication there is. I have a very low tollerance to anything. I was on Tegratol and Keppra but both of those gave me severe depression and mood swings. They were destructive and they didn't really help with my seizures. Neurontin is wounderful. I have been taking it for a little over a month and I have just started to see how it is doing with my seizures. I have been seizure free (cps)for 9 days now and that is GREAT for me. I still have some mild deja vus and hallucinations but they are going away too. I see more when I am tired or stressed so I TRY not to let that happen.

I just wanted you to know that you are NOT alone! I have everything you have but have never had a gran mal. YOU HAVE A FREIND IN EPILEPSY! Write again, I would love to hear more about you! OH, and WELCOME to the board!! Great people here!!!

God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Thank you kittymom! I had tears in my eyes and goosebumps when I read your post, you are the first person that I have EVER talked to that has this exact thing! I started having these and had no idea what they were, I was so scared because I thought it was a mental illness or something because I didn't know what they were and had never heard of such a thing! When I would have one for example I would be on the phone with someone, and the next thing I knew I would be off the phone and couldn't remember any of the last off the conversation nor hanging up. My boyfriend and I went to see my parents one week-end and I had one, and when it was through I had a diet coke in my hands and couldn't remember where it came from (he had given it to me), and my dad was sitting in the room. I didn't know where I was, and when it was over, I asked my boyfriend what my dad was doing there because I didn't remember anything. (I had about seven in all that day) It's always a very intense dejavu feeling and a paranoia feeling, but when it's over, I can't remember anything that went through my mind usually. Right afterwards, I am confused and exhausted for about 30-45 minutes, sometimes nauseated, sometimes loss of muscle control. Right afterwards I am extremely scared and extremely paranoid. Sometimes if there are people around during the seizure, it feels like an "out of body" experience, not so much that I can see myself, but I am looking at them like I think they can't see me almost. Especially if I am by myself, I am extremely paranoid and scared after they are over, as well as extremely exhausted. As long as I don't try to talk during them, I think I am okay, but if I start talking, I know I don't make any sense. When I went to the doctor orginally, I made a sheet of notes of all the "symptoms" during and after, and was so scared that it was something else, but they had gotten so much more frequent I knew I had to do something. When the doctor told me they were seizures, I was just so shocked!

By the way, do they have any idea why yours started? Right before I turned 14 (I am 31 now) I had a really bad concussion and had a gran mal seizure about a year later. They attributed that to the concussion because it was such a pivotal age. They put me on Phenobarbital and then Tegretol in high school, and then eventually took me off to see what would happen (about 2 years later) and thought that the seizure was just a one time thing. So, these have started and could be just something from that, but they don't know for sure.

I understand about the driving! I had one time in the car, and nothing looked famaliar, I don't even think I recognized a road! I just knew to follow the car in front of me (I was on a highway and couldn't pull over!). I followed them and kept driving, and was absolutely petrified because I didn't know where I was. I pulled over as soon as I could until I felt better to drive, but did not know where I was!

I thank you again for your response, it has done wonders to know that someone else can understand how these work!

Thank you and God bless you! Please feel free to email me anytime!

Amy

Hi Amy,
Your complex partial and temporal lobe seizures sound a lot like mine. I've had both absence (petit mal) and complex partial seizures for 31 yrs. and according to my Epileptologist cp sz. are the hardest form of sz. to control.
When I have a cp sz. I start to get a nervous feeling in my stomach like butterflies and then I begin to see colors flashing back and forth in my eyes and I hear one word repeated over and over which makes it sound like an echo. The next thing I notice is that I'm not sure of where I'm at even if I'm sitting in my own home.
If you get any warning before your sz. begins tighten all the muscles in your body and make your hands into tight fists often this will stop the sz. I learned about this back in the 1970's and take my word it has stopped many of my sz.
You have mentioned that you have these sz. in clusters and I know I'm no Dr. but when I womans hormones change each month this can cause her to have seizures because the estrogen level is to high which can lead to sz. and the progesterone level is to low and progesterone helps calm the nerves.
My Dr. told me to keep a calendar writing down the time of day/night along with a description of my seizures. He also told me to write down when I start and stop my period. After reviewing the calendar for a full yr. my Dr. saw a pattern of when I have seizures and just like you I have at least 2 days each month that I have clusters of sz. and this is all do to hormones changing.
Over the yrs. and trying over 10 sz. meds I have found that neurontin, diamox, and mysoline are the best meds to control my sz.
Here's wishing you well and May God Bless You!

Sue

dear newbie / amydianne1,
i have a daughter that is 18 now but started having seizures when she was five. She was diagnosed as having Viral Enchephilitis. The frontal regions of her brain were swollen. Through the years we have gone through most of the common medicines, sometimes I felt like they were treating her lab animal for experiments. I am very familiar with those complex-partial seizure break throughs. This is what happens with her: If Terra would just get up and walk away without saying anything to anyone, we knew something was gonna happen. She would always walk towards the bathroom whether she was home, at school, her boyfriends or even grandmas house, everyone that knew who knew to follow her. For 3-6 minutes she would be very disoriented, lost eye control and speech control. She could hear me if I spoke loud enough. I would hold her hand and rub her arm, shoulder or back so she could feel that I was with her on top of hearing me. I would say things like "Come on Terra stay with me" or "Baby, mom's here with you, you are okay". Now this is when we learned what to watch for to know if it was going to abort or go on into a seizure. She often favored her leftside.
When her eyes and head would start to turn and roll to her left then we knew that she was going to have a physical seizure too. From what I have been told, the complex-partial seizures are as follows: the brain is actually having a seizure but there is no bodily convultions (yet). Either it will either "Abort" or it will go on into a "Physical Seizure". When they would abort, she would go right to sleep (times varied). Depending on how long the complex was, would depend on how long and hard she would sleep.
If you are interested in talking more email me at blndbch@aol.com. take care

scooby..You explained that like my brother has them too.Very disoriented but for 10seconds,kind of like your in a deep thinking mode.And yes we would have to watch him too because it's only time before the gran mal would hit,whether it be after that or a day or 2 after.He's 23 and has had them since he was 16,but we never knew for at least6months they were petit mals.We thought he was on drugs.But now we know what to look for.

Amy

Your szrs sound very similar to mine I'm 32 and from the UK mine started at the age of 17. One question for you.... have you made a journal of when your szrs happen - is there any pattern you say they are every 3-4 weeks and last about 3 days - not anywhere near your peiod are they?????

I also agree with previous postings does not sound as if the current drugs are doing their job - maybe a push for a secondry or a different primary drug would be a good idea.

Don't know about the US but I had to ask for a re-referall to a different specialist I then received the best treatment I have ever had in the 15 years I have suffered from E

Best wishes and keep well

First of all, thank you all for your response, I have gotten more information for you all than I have my doctor and the ER! It just amazes me the time and frustration that it has taken to finally get a neurologist! I am hoping that he will take me off of the Dilantin, it is a bit better after two weeks of taking it, but it is so hard for me to concentrate and remember things, plus I feel "drugged" all the time. It finally starts wearing off and I feel like my old self, and guess what, time to take it again! (I'm taking it before bedtime). I have kept a journal of all the seizure activity, but unfortunately there is no rhyme-or-reason. Sometimes they happen right around my cycle, but other times it can be mid month. Alot of info I have read is that this particular form of seizure activity is hard to treat sometimes. I dread the thought of having to try different medications! I would almost rather take my chances with the seizures! The last round I had though were so bad though, I guess I should be glad that I'm finally on SOMETHING though! With some of these neurologists, I wish we could just hook them up to a "magic machine" and they could see exactly what these feel like.

Also, I have read up on the ketogenic diet, but don't know much about it to be honest, but is it supposed to work for this type of seizure activity? Even though it is quite disciplined, I would rather do that than have to take medication. This could all just be wishful thinking on my part!

Thanks again to everyone, and I truly appreciate all your posts!

Amy http://www.healthboards.com/ubb/smile.gif

Amydianne,

You, Grumps and I should get together and go on holiday. We all have the same feelings and experiences. This is great!! We are sisters in "E".

God Bless you all,

KittyMom http://www.healthboards.com/ubb/wow.gif

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

The vacation sounds good to me Kittymom!

BTW, I am trying out a new neurologist on Thursday that was a referral from the ER...Hmmm, hope this turns out to be good! Wish me luck! I am armed with lots of notes. As you, I have started researching so much since I was diagnosed, it's like I just can't get enough information! I am so ready to go, I am hoping and praying he will try something else besides the Dilantin, I am tired of feeling "sluggish" and dizzy all the time!

I do wish you nothing but luck when you go to the new doctor. Let us know if he says anyhting different. I hope they get you figured out.

Mine is getting worse again. I am having seizures more frequently now and the auras are BAD! The mini Deja vus are BAD also. How do you feel after a seizure? Not the immediate after but the next day? My post ictals scare me...sort of like the deja vus scare me. I had a seizure last night and now this morning I feel strange. I have mini deja vus but the are making me scared. Anyway, how do you feel after them?

Hope you are doing well and hope to hear from you soon.

God Bless you,

KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

KittyMom - so sorry to hear you are bad again. I agree completly with you the day after a szr I feel like crap... I get this feeling of fear and de ja veu on and off all day - I find it is worse when it is quiet around me does that make sense.

Thake care and look after yourself and I am certianly up for a holiday........

Hello....Kittymom, sorry to hear your seizures are getting worse lately http://www.healthboards.com/ubb/frown.gif

After I have a seizure, the next day I am absolutely wiped out...especially if I have them for about 3 days. I rarely take naps, and the day after some I slept for 2 hours in the afternoon! The last "round" I had, I had about 7 in one afternoon, and then I had about 30-35 auras that evening (one right after another). I would get the kind of "soothing" feeling and then the strange feeling in my stomach which would last for about 5-10 seconds, and I would lose touch for a second with my surroundings (not as bad as with the full seizures). Usually my seizures last about 3 days, and the last day I get a tremendous amount of "auras". (I assume that's what they are, they are the same as the seizures, just not as long or as intense)

When I am by myself, I get an extreme paranoid feeling. Not because I think something is going to happen to me, but just terrified to be alone. But, I still get scared after the seizures, just not as bad when someone is around. I'll see people around me that I know, but really won't recognize them during the seizure. It's almost like an out of body experience where I can see them, but it's like I'm "looking in" and almost like I feel that they can't see me, more like I'm watching a movie.

Vacation sounds great, a destination where there are no seizures...haha http://www.healthboards.com/ubb/smile.gif

Hi Amy,

You've found a great board!!! The people who come here are wonderful http://www.healthboards.com/ubb/smile.gif I don't have E, my baby does, and they give a voice to a little guy who is struggling with the same issues but can't voice them himself.

He's 18mths, has TLE - cps, sps and absent seizure activity. Currently transitioning off Dilantin (not sure what they will replace it with) Tegratol, and Trileptol. My guess is that they will pull him off the Tegratol as well since it didn't seem to help at all.

You might ask your Dr about Trileptol. It's helped Jake the most - still not completely controlled but closer. It's a newer drug and seems to have fewer side effects.

Nice to meet you. Your in my prayers as you go through this and please know that you are not alone.

Lisa and Jake

P.S. About that vacation... Do you ladies need a driver? I could use a break! http://www.healthboards.com/ubb/wink.gif

Thanks for your post Lisa! Sorry to hear that your baby has it, I couldn't imagine that for a child that age, it's hard enough for an adult! My heart goes out to you both because I know the medication is no fun. Thanks for your post, and please feel free to email me anytime at amydianne1@hotmail.com.

You ladies are the best!! I look forward to hearing from you each day. It makes all of this "E" junk feel a little better.

I had a rough day yesterday. Depression, auras, fear, upsetment, etc. I hope today is better. Sometimes these things last about 24-48 hours. I am hoping that this last one was only for 24 hours because they are bad.

Lisa, we could always use one more person on our holiday. We are heading to a place where seizures don't exhist. This place allows you to feel normal for as long as you are there. Ohhhhh what a place!! Amydianne, Grumps, and I would be happy to have you along. I would drive myself but I CAN'T!! lol

Lets hope that everyone is doing better today than they were the day before. I look forward to hearing from you guys again. You make my day!!

Thinking of you all and praying that you are doing well.

God Bless You,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hello to everyone! I went to my new neurologist today, and so far I like him. He changed my prescription to Lamictal, and is going to slowly take me off the Dilantin...YEAH!! He is doing an MRI to see if there is any bruising, and if that is causing the seizures. If so, that would require surgery, although I don't know much about it, or how likely the possibility is. He said sometimes this form doesn't always respond well to medication and then said something about a VNI or VRI (I THINK that's what it is called) that is installed like a pacemaker...but I think those were mainly just two case scenarios.

I am just SO glad to be changing med's, I am so sleepy all the time, and just kind of have a sick feeling and stay dizzy. I am hoping that I won't have anymore after the new medication kicks in, and less side effects.

Kitty mom, vacation sounds good...in a land far away with no seizures! And Lisa, you can drive us!

Thanks to everyone, and I truly look forward to your posts every day, it's so nice to talk with people that understand where you're coming from!

Amy http://www.healthboards.com/ubb/smile.gif

sevenravens here! I'm brand new to this kind of communication, so bear with me. I come up as a junior member, but I'm 61 yrs. old! I've been dealing with a rare endocrine condition, hyperparathyroidism that is ectopic, that is they can't find it to remove it...the only cure. After a seven hour very debilitating surgery last June(7days in IC, 5 days in Cardiac IC, and 10 days in total, to be sent home with a feeding tube(for two months). I had so many odd symptoms pst surgery.
Just recently I agreed to see a Chronic Illness counselor. She sent me to psychiatrist. I was getting scared. However, I was extremely relieved to discover that my "wierdnesses", that even had me ending up in the ER a few times was Temporal Lobe Seizures or TLE.

I just started on Topamax(50mg, nightly). So I'm welcoming myself to the club! Hello, out there!

Hello Sevenravens,

Sorry to hear about your terrible surgery. Sounds like it was the worst!! I too have TLE. I have simple partials and complex partials. I was having severe deja vou feelings for 8 months before I "went out" in a job interview and that prompted me to go to the doctor. When they told me I had seizures and I laughed in their faces. I thought seizures were the gran mal type and would never have guessed that there were other types.

Welcome to the board. There are some GREAT people on this board. All of them have unique experiences but many of the same as you and I. It is comforting and refreshing all at once! You will love it here! Some ladies don't even have "E" (epilepsy) but their child has it and they want to know what the child may be feeling that they can't describe. It is so wounderful here!!

Well, I hope to hear from you again soon. Please write often. I would like to know, tell me a little bit more about how you found out you had TLE. Was this surgery you had in any way related to your TLE?? What feelings were you having that prompted you to go to the ER??

I hope this finds you well.

God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Dear Kittymom,

I don't think my surgery was in any way related to the TLE. In fact I think I've had the TLE for quite a while, but since the symptoms were so bizaree and my preconceptions of epilepsy so stnndardized that it never occured to me that I could be a sufferer.
About Ii/2 yrs. ago I insisted on having a DEXA, that's base-line measurement of my bone-density. I had just turned 60. I had been having many strange, unexplained health problems that turned up negative in all the tests I had. I kept trying and fending off verious anti-depressive medicine, but feeling depressed becuase I had no answers, feeling crazy because of my symptoms. When my Dexa came back I had lost 2 inches in ehight in a year and had osteoporosis in my hips and spine. I wa shocked, as I thought that would be the last part of my physical being to be blow par( I had been the oldest person to complete training to be an ******d Bound leader, and in fact in my late 50's had worked as an Education Coordinator for them).
I immediately switched primary care physicans. My new pcp, a woman, listend to my "aches and pains" list, ordered some simple blood tests, discovered I had high calcium levels sent me to a specialist, and I ended up diagnosed with hyperparathyroidism, an endocrine condition. A gland, usually located in the neck, half the size of a pea, that regulates the amount of circulating calcium in one's body, was out of control. The simple, and only cure, surgical removal. My problem, it can't be found. So here I am with a hidden gland(possibly in mychest) that's sending signals to my brain to "rob", my bones, my teeth of calcium 24-24 aND there's nothing to be done)
It's called the"bone, moan, stone(kidney) and groan disease" by those who have it. The excess calcium leads to kidney stones, high blood pressure, bone loss, tooth pain, bone haemorrages(sometimes small bones in my feet break just by standing on them) extreme fatigue, irritability and eventually dementia!
So, when I would come downstairs in the morning and discover a sink full of dishes and the porkchops gone and not rmember cooking, serving and eating them. My family insisting them that I did, and just acxted a "little spacey", I assumed It was part of my condition. When I would have extreme olfactoray hallucinations for days, followed by excruiating headaches, then 2-3 days of almost a coma-like "sleewpiness" I also assumed it was my condition. When I couldn't rmember what had been said to me just 5 min earlier(and I have a MFA,and taaught
Study Skills on a college level) I also assumed it was my condition. When I ended up in an ER with my kids, and the nurses questioning me as to what "drugs" I had taken I still thought I was maybe going crazy.
Finally when My family became less and less understanding of me I sent myself to a chronic illness psychotherapist, after three sessions she insisted that I see a psychiatrist for an "evaluation". Now, I was depressed! But voila! Dr. Fabisiak, put a few things together, including some medical records and
diagnosed me with temporal lobe seizures. I've never been so happy! I'm not crazy!
Oh yes, last week, around 8 pm, after I had been insisting that my husband re-shower, that the dog needed a bath(I had re-bathed, and had sprayed perfume UNDER my nose) I begged my husband to take me to the ER: I had the most terrible headache. I usually avoid the ER like the plague(based on many experiences, not to mention the cost!), he must have beleived me. I didn't have to wait a minute in the waiting room; they thought I had a brain bleed. They gave me demerol, the tuinal, did an MRI, then sent me home and told me I must have sprained my neck "somehow. I was obviously "confused" as I had insisted on wearing a full-length robe(which I rarely wear anyway) over my street clothes. And I still had the terrible headache.

Dr. Fabsiak explained too me, that TLE's don't show up on MRI's anyway.

Sorry to go on at lenght.

So I'm just now starting a regimen of Topamaz...50mg. at night for 6 days, then up to 100(I,m allergic to sulfa based ADE's) What do you take? Any helpful hints. By thee way. I don't lose consciousness. Do you?

Hi Sevenravens,

What a coincidence. I had hyperparathyroidism when I was in my late 30s. (I am now 51) The symptom I remember most is being incrediable thirsty all the time. Also the bones in my lower legs were sore if I pressed on them. I went to the doctors and they tested my parathyroid level. The upper limit of normal was 40 for the test and I got a 58. I was fortunate. My symptoms slowly resolved themselves and I never required any surgery. To this day I don't know what caused the hormone to be elevated.

I was first diagnosed with TLE about 6 years ago by a private neurologist even though all tests were negative. About 2 years ago I went to the epilepsy clinic of a major teaching hospital to get a second opinion and was told again that I had epilepsy based on symptoms that began in childhood. I am now seeing an epi at that hospital.

I am currently also seeing a psychiatrist that I self-referred myself to before I understood that TLE was the cause of my symptoms. Fortunately this doctor is also familiar with TLE. I find it helpfull to be able to talk about the impact of many years of undiagnosed (and misdiagnosed) epilepsy on my life.

Currently I am not on any medications. I experience forced nomalization when I take any.

I am interested to know if you or anyone is familiar with the work of Dr. Ramachandran on TLE and religion. Some Doctors believe that important historical and religious figures may have been experiencing seizures. People with TLE can have profound 'mystical' or 'religious' experiences. People with TLE often have an enhanced abilitly to see meaning in things. I have been wondering if other people have experienced this. I have had experiences that felt as if I were touching the infinite - touching God. I had a prophetic experience when I was 10 years old that has had a profound impact on my life and continues to. (I also have many of the other TLE symptoms that people here are speaking of.)

Sometimes the cause of TLE does show up on MRI but often it does not.




[This message has been edited by rainonwindow (edited 07-12-2003).]

Hello Sevenravens,

What a story! You have been thru so much. I hope things are better for you. I just don't understand one thing, if you don't go "out" how did you not remember preparing, serving, and eating dinner that one night? Did your family notice anything different about you that night? Just curious http://www.healthboards.com/ubb/confused.gif

I do go "out". I was having a deja vu sensation for about 7 months that was accompanied by extreem fear during the deja vu. I had a couple of instances where I was places and didn't remember certain things about it but chalked it up to stress playing havoc on my mind. What made me go to the doctor was that I was in a job interview and I got the deja vu feeling and I told myself to maintain composure because I get scared, I sweat, and I tend to cry because of the fear. I made it thru and then the next thing I know I was walking to my car in the parking lot. The employer did call to see if I got home safe but I didn't know what happened to me in there. I didn't ask because I didn't want them to know that I didn't have a clue as to what happened so I just said that when I got home I took my temprature and I had a fever of 105 and I was on my way to the hospital. I did go to the ER because my husband was freaked out. I was too. They told me that I was having seizures and sent me to a Neurologist. He has been trying to help me figure out the right med for me but so far NO good. I am on Neurontin but if you look at the post titled, "Dateline reports on Neurontin" you will see what me delima is now. I do go "out" on average 3-4 times a week. I have had spans where I will only go out once a week or once in a week and a half. On August 4th I am going into the hospital for 5 fays for a long term Video EEG to try and catch a seizure in progress. Up to now all of my tests have come back normal but I do have TLE. I have partial complex seizures and simple partial seizures (my deja vu feelings). It is all going OK so far but lets see.

Thanks for writing. I would love to tell you more but I have to go to work in a min. so I have to go. Please write again. I would love to hear from you!

Amydianne and Grumps, where are you??? Did you go on Holiday without me?? Please write!!

God Bless you all,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

dearrainonwindow and Kittymom,
I'm new to these message boards. I don't really know how to use the. i.e. How to reply to two different individuals, so I'll keeep this reply short. To Rainon window. I have'nt heard of Dr. Ramachandran's writings, but I have read and researched a lot of writer's of the mystical sort and it would not surprise me to hear that there is a link to epileptical states. What is nomalization? I am newly diagnosed, although I think I've been subject to these "states" for years and years.

For Kitty Mom: I don't go "out", that is seem unconscious, but I go out "to myself". apparently I function perfectly, like giving a writing assignment to a student on Richard the I of England? but having no recall of having done so. As to the porchop dinner, I was wondering who made a mess in my kitchen when I came downstairs the next morning(not the first time), and who ate the chops I was planning to cook for dinner, apparently I cooked, ate, and carred on seemingly "normal" to my family, with no recal whatsoever, other than having a severe headache.

Good morning kittymom! I am here, just dragging a little! I am increasing my Lamictal while decreasing my Dilantin (yeah!!!). I am praying that I will feel much better when the Dilantin is out of my system! I had a few "auras" this week-end, but it never launched into a full-blown seizure, so I am grateful for that! I am supposed to have an MRI and EEG done within the next week. Are you feeling better??

I am glad you are still here!! I hope the Dilantin gets out of your system with no problems but only JOY!! I was on Keppra for a while and it did a number on me. When I started getting off of it I felt sooooo much better. It took a few days to see and feel the difference but when I did, LOOK OUT!! I was on top of the world!

I am doing worse to be honest. Thank you for asking. I have had two seizures in less than 48 hours and I am not happy...obviously!! I think it is because of my "monthly visitor". I just want this over with. On the 4th of next month I go for that long term video EEG in the hospital and I am hoping that will show the doctors enough to get me the right meds to control these nasty seizures. So far all of my other tests haven't shown anything except that I have tiny ear cannals and a small throat. That didn't do much for me in the way of seizures.

I hope your tests show something that will help you out. Please write me and let me know how they went. I will pray that it is helpful for you. Please let me know how they went. When do you have them??

(((hugs)))
God Bless You,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hello kittymom!

I am supposed to have them within the next week or so. I wish they had done an EEG when I was in the emergency room, but better late than never. It would have been nice to have one while I was actually having the seizures.

I am so sorry you are not doing well http://www.healthboards.com/ubb/frown.gif Is the medication just not working??? My neuro said that if they find scarring, then he would want to do the surgery to remove it. As much as the thought of that scares me, I would love to be "seizure-free" and no more meds! But, no scarring means they can't do anything. So, I will be anxious to see what the MRI says. he also talked to me about the implant which I don't think I am thrilled about!

Does your doctor thinks that your body just isn't taking the medication or it's not reacting to you? I'm so sorry you are having any of them at all. I haven't had a seizure in three weeks Thursday. I'm a bit nervous because mine come about every 3-4 weeks, and last about 3 days, and I have about 10 a day, and the last day I'll have about 30 "mini ones". So, we're going to see if the medication is working or not. It would be about time for them in the next week or so.

I hate that you are still having some, I know that after I have a "round" of them, I get depressed and a very hopeless. Plus, the frustration is bad enough to drive anyone crazy, and no one can understand it that doesn't go through it. It's like I have told my family, I can sit there and try to explain what they feel like, but unless you have one, it's impossible to understand the magnitude of how you feel and what they do to you. I hate that feeling of not remember anything afterwards, and not knowing what I did/said, so I can completely understand where you are coming from. I can have a conversation with someone when I'm having one, and when the seizure is over, I don't remember one thing that I said. Besides all of the other side effects, I think the paranoia is the worst, especially if I am by myself when I have one, I am absolutely petrified. I will sit in the middle of the room in a ball and just shake because I am so scared. My boyfiend said last time I had one, he was trying to talk to me, and I kept saying "shhhh" and I acted like I was scared, and was saying things that made no sense, and of course, when it was over, no memory of it, just the physical part that goes along with it and knowing I had one.

I will keep you in my prayers, and pray that things get MUCH better for you! Please let me know how the EEG turns out for you, I will be thinking of you. Also, feel free to post anytime, it truly makes my day!

Sending hugs your way,

Amy http://www.healthboards.com/ubb/smile.gif

Hi Amy,

How are you doing?? I hope well! Heard from GRUMPS lately?? I haven't been on here much. Don't know why. I think I am going tru a bout of depression. My oldest daughter is gone for two weeks and I miss her, my seizures are happening more and more, my husband is going thru his period and being a jerk, and to boot I am going tru mine.

Sheesh, maybe I should have a seizure to get me away from all of this. I am just down now but it will go away soon.

How are you guys doing?? Anything new? Write me!!

KittyMom

Kitty Mom and Amy Diane when I read your posts I have to check the user name and make sure I am not reading my own words. You sound exactly like me. How sad for all of us..... I had those weird deja vu things since I was a kid and never knew what they were until I read an article about sz in a magazine- at age 25! All those yrs wasted, frying my brain. That's prob why they're so hard to control now. I am now starting to get off Keppra because of the unbelievable depression it sent me into. I tried Lamictal but I got a bad rash after 5 wks and doc said stop it NOW. I was put on the Zoloft for the depression but I don't think it's doing me any wonders... And now I can't sleep at all unless I take Ativan, which I really don't want to. But if I don't sleep I'm in big trouble with sz. I'm about to start Dilantin tonite and am very nervous. I mean, how much worse can this get??? I was under decent control until last yr when I had a really loooooong grand mal, the first one in 9 yrs. And I really think I "blew" something in there.
Hope your stories have happier endings than mine. I just sent my 'life story' to the EFA newsletter, let's see if they print it. Probably not-- it's not very positive anymore!!

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Karenz, 30-something Mom. Simple partial sz since childhood. 4 grand mals. On Keppra, Zoloft thanks to Keppra's depression, and Ativan thanks to epilepsy's insomnia

hello karenz! Welcome to the board...it is so nice to hear from other people that have this. I started having these when I was a kid and didn't know what they were, and had never heard of them, and tried to hide it out of embarrassment. Then they started getting worse and were getting unbearable. I am having an MRI within the next few weeks to see if I have any scarring. I honestly thought something was mentally wrong with me or something and was scared to have it seen about because I had never heard of it before. When I finally went to the doctor (my boyfriend is the one that made me, I had one in front of him and wasn't able to hide it, I kept talking nonsense), and they told me they were seizures, it was like a light bulb went off. I felt the same way, it was like "wow, all this time wasted, and have I done permanent damage"?

How long have you been having them now?? Mine started when I was about 14, and I would have them only now and then, and they started getting worse within the last year or so. I'm glad I'm finally getting them taken care of, but so far I hate the medication! It's so nice though to meet other people that have this because it's so hard to explain what they feel like and what they do to your body to people that have never experienced them before.

How long have you been on your medication???

HI Amydiane.... I'm online all day today cuz I feel so lousy I can't really function or anything so all I'm doing is logging on. I've had simple partials since I was about 8, as I said not diagnosed until age 25 (my own fault), and now I'm 37.
I've been on meds continuously since about '95. Starteed with Tegretol, Mysoline (for just a day cuz it made me so sick) then added Depakote, then switched to Phenobarb, then Topamax, then back to Tegretol, then switched to Keppra, then tried Lamictal but stopped b/c reaction. Trying to get off Keppra cuz the depression is unbearable and I can't function. Starting Dilantin tonite. My partials come about 6-12 times a month, when I was a kid they were only while awake, after I got married they came more often in my sleep, now they do both. yay. Nothing really seems to help them. I used to not care but since my big Grand mal of last summer started with a bad simple partial, I am terrified of them! The past yr for me has been hell with one side effect after another. I wish I would've seen this board last yr, I could have been so encouraging. Now fahget it!

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Karenz, 30-something Mom. Simple partial sz since childhood. 4 grand mals. On Keppra, Zoloft thanks to Keppra's depression, and Ativan thanks to epilepsy's insomnia

I had a grand mal when I was 15 and never had another one. (I'm 32 now). The complex partial are getting worse though, not only are they more frequent, but I feel extremely hot when they hit, which hasn't happened before, and I feel more like I'm going to faint, which I'm scared could turn into another grand mal. I took phenobarbital then tegretol when I was a kid (had much better luck with the tegretol, the pheno wiped me out). They took me off of it when I was 17 because they thought the seizure might be a "one time thing". I would have a few of the complex partial's back then, but my neuro didn't diagnose them, and when you know like I do that when you're young and you don't know what they are, you feel like something is wrong and you want to hide it.

This board is wonderful because it's so great to communicate with other people that go through the same thing, an for me it's supportive to know that other people go through the same thing and it doesn't make me feel as crazy! I know when I have my seizures, I am physically worn out for days, and am so disoriented that I don't want to be around anyone.

I know they are changing your meds, but have the seizures been pretty much under control for you lately? I'm kind of new at that because I haven't been on the meds too long again, and so I don't know if they're working yet or not, I should find out soon.

Amy D-- no my sz are not "under control"-- they still come 6-12 times a month, sometimes in clusters and then a nice break for 2-3 wks. I keep a calendar and once in a while they're catamenial'' around my cycle-- but otherwise not at all. Dr keeps blaming stress but I have as many while on vacation as not. So I really think there's no pattern. And the past yr I feel really lousy a few days a wk. I keep reading that sz get better as u get older but I think I wasted too many yrs not knowing and thus not treating them so too late for me. I started DIlantin last nite, so far no beard growth yet but I've hear about it...
KittyMom I read one of your other posts about feeling lousy, well that's the day I had yesterday so let me cheer you up today.... The bad days come but then they go away. SO hope yours goes away too. I hadn't slept 2 nites ago so yesterday I was a wreck and zombie, but last nite I took an Ativan-- which I hate but I have to-- and today I feel much better. So hope cheeriness is contagious, cuz "the dumps" sure are!!

The doctors kept asking me if I only get them when I'm stressed...Sometimes I do, but then other times I'm fine when I get them, plus during some stress I don't get them at all, so who knows! I have been marking the dates of them on a calendar. I'm like you, I'm worried because I waited so long on these, and I hope it has not caused alot of damage. As far as getting better as you get older, I wish mine would, they are getting much worse.

I have had a couple of auras since I started the medication, but knock on wood, no seizures yet. Not trying to be negative, but it hasn't been that long since my last ones, so we'll see what happens.

How is the Dilantin working for you today?? Mine started out like a tranquilizer BUT after it got in my system it wasn't quite as bad for me. I'm taking Lamictal now, it is supposed to have low side effects, but I see alot about people getting rashes!

Dear Lisa and Jake,
I was glad to know i wasn't the only mother facing this with a small child.I need to correct thomas age he turned 4 a month ago.I had such a tension headache the las time.I want to answers some of your questions Lisa.
Thomas was born premature.even though he was born 6 1/2 weeks premature he weighed 5lbs & 12oz.at nine months i knew something was wrong he wasn't sitting up or crawling.we had several test done and discovered thomas left side muscles were under developed.he started physical therepy shortly after,at the age 27 months thomas started walking and still has phsyical therepy.but instead of 5 days a week it's 2.he still falls a lot and bumps his head often.
a year a go this October my husband and I both called outta work to meet thomas daycare provider at the hospital thomas passed out and couldn't be woke up.we learned that day thomas has type 1 diabetes.as of today thomas is controlled.
thomas has chronic asthma. he's on steroids,inhalers, and he's on his nebulizer quite often.thomas has attended united ceberal palsy school for disabled.for 2yrs now.we also have discoverd many more disabilites in thomas.brain sensory disorder,mild case of autism,thomas has speech therepy 4 times a week 1/2 hr sessions,and occupational therepy 3 times a week.
a month ago thomas was admitted like always into the hospital,because he was running a severaly high temp."He also had something called peteki"they monatoried his blood pressure on the hour.they found through blood work his blood wasn't clotting properly,and put him om meds for that.he'll be on these meds 1yr to make sure it stays stabel.and now all this.It seems like when i get use to one situation after spending dayson in sleeping with him at the hospital,another issue arises.My husband and i decided that I would become a stay home mom after discovering thomas diabetes,and autism.because I needed to be here when needed by his school and him.
We thought we could handel all the bills off my husbands salary which he makes great money,until now when everytime we turn around rearrange everything to make things affordabel and now temporal seizures.I could careless about the bills as long as there a positive answer for what is wrong with thomas.I cried myself to sleep lastnight asking why is thomas being put through all these hard times it's not fair to him.I do love all 4 of my little ones my 8 yr old is always saying mom things will someday get better.he himself has ADHD.but he knows when something is wrong.he alarms in the middel of the night if thomas is having an attack.he's also young but wants to help with his little brother.to let ya know i have slept several times in my sons room to keep a close eye on him.my family says I treat him like a china doll,and tells me to get a grip,but I don't know how because of all these emotional events.can u give me advice?

Amy,

How are you doing today?? Feeling any better? I hope so! This has been a crazy place the last few days. When it rains it pours. My oldest daughter is back in NY visiting friends and my father-in-law is having a fit because she is out there and is having a hard time coordinating a time to get together with her. She is trying but they are not finding a happy medium. So what does he do? He calls us (3,000 miles away) to have us figure it all out for him. I love the man but sometimes I think he is not all there. http://www.healthboards.com/ubb/smile.gif I have had 4 seizures in 6 days and I am not feeling the best. So this situation is overwhelming. My husbands work schedule has changed, my not being able to drive is now becoming a problem with the kids going back to school Monday, I am discovering that this Neurontin is making me have more sp seizures, my job is making me mad by treating me like I don't exist.....AARRGGHHH!! No wounder I am having seizures! ha ha

How have you been? I really want to know! You are soooo sweet!

God Bless,
KittyMom

Hello kitty mom!

I am doing okay, just kind of "blah" today....I have had just a few auras today http://www.healthboards.com/ubb/frown.gif But I am hoping no seizures. BUT I have my eeg Monday morning, so if I was going to have a seizure the next day or so would do it!

I am trying to still get used to this medication. Tonight is the last night for the DIlantin....YEAH!! http://www.healthboards.com/ubb/smile.gif Then I am building up on the lamictal. I am having a bit of a problem with it, although it still could be the Dilantin since it's not completely out of my system yet. I am having the worst time remembering things and I am staying dizzy alot. We went to an antique mall today and I asked him if the floor was slanted or not (it wasn't!) because I felt like it was because I was dizzy and an off balance feeling. The memory thing is bugging me because I have always been able to remember very detailed things, and I'm finding myself having difficulty remembering the smallest things. My boyfriend is wonderful and very supportive with all of this, but it seems like I can't get enough information on this and am constantly researching or reading more info and that seems to be all I talk about, and I'm trying to get better at that! As far as my family goes, they're supportive but pretty much have the mind set of "It's fixed now, you're on medicine, job done", but it is so far more than that. I wish seizure medication just felt like popping an aspirin and no side effects!

How long is your daughter gone?? That is a pretty good distance! I love New York, I have been there many times. I would love to go this year for the Macy's parade.

How is your weekened going now??? I am so sorry you're still having seizures http://www.healthboards.com/ubb/frown.gif Please let me know how you are feeling, I hope feeling better! I will continue to keep you in my prayers.

Talk to you soon!
Amy http://www.healthboards.com/ubb/smile.gif

I feel like I just read about myself!!! I too also have all different types of seizures. They were just diagnosed within the last 2 years or so ago.

I can remember being a little girl trying to explain to my mom about the "deja vu" feeling. They ran a bunch of tests on me and blew it off as asthma, due to the tingling sensation starting (most of the time) in my stomach or chest. I can explain it better now as an adult, I am now 22. For the longest time I thought I was going nuts!!! It was just Nov or Dec 2001 that I was diagnosed with Epilepsy. It has been a LONG few years!! I was terrified when my (now ex) boyfriend told me that i had had a grand mal seizure in my sleep. I thought he was just trying to mess with my head until he told me about a week or so later that i had another one, again in my sleep. I had just found out that I was pregenant, so when I went in for a checkup I said something to my ob. She just kinda blew me off and said that if I had any more to contact her or my pcp.

On Dec 7th I had another grand mal while with a friend, and ended up goint to the er, where I found out that i had indeed had a grand mal seizure, which terrified me!!! I had just found out that I was pregnant, and was scared that I would have to give up my baby, I didn't know anything about E then. Well after an EEG i was immediatly reffered to a neuroligist (which i can't say that I'm too impressed with) I later found out that the lady that did my EEG said mine was the most abnormal she had seen in over 15 years. Since then I have had a CT scan, had my BEAUTIFUL baby girl (which is now just over 1yr old) MRI, and tried several different meds and combinations of meds. I am currently on Keppra and Depokote. So far nothing has worked for me... No grand mal seizures for a while now, that I know of ne way, but still have the "small ones" several times daily.

I go on July 30 for another MRI, then starting August 15th I go to an Epilepsy clinic to begin more testing and talk about the possibility of surgery, which at this point im almost welcoming it!

Sorry for rambling on for so long, but I would like to become part of your circle you have going on here, I feel none of my friends or family can even come close to understanding what I am going thru, so it would be nic to have people to talk to that actually know what is going on with me!

Amyd,

YEAH for the last night of that med. I hope the lamictal is better for you. Don't get discouraged about the effects of it quite yet. They always tell me to wait 4-6 weeks before you get a good idea of how it will work for you. You will always get the sleepy and dizzy and disoriantation(sp?)in the beginning. I hate that about AED's.

I too could remember EVERYTHING!! I had a memory like an elephant but I can't remember anything any longer. Words seem to be the worst for me. I have read that AEDs don't help but "E" is the main reason that your memory goes and not the meds. "E" takes its toll on your memory real bad because of where the seizures and auras occure. I know it doesn't make you feel any better but that is what I have read. I am like you also with the research thing. I am doing that constantly and I think my family is sick of hearing the "latest discovery" from me every time I find something new. I am very happy for you that you have your boyfriend who is so supportive of you. That is a rare thing and he should be given a pat on the back. What a great guy!!

My daughter is back in NY visiting all of her friends and saying hi to our old neighbors and she even ran into some of my ex-coworkers. I wish I was there too! I miss that place! I would move back in a heartbeat except I came out here to be with my mother whos health is failing. I need to be with her but if it wasn't for her I wouldn't have left NY and NJ. She will be gone until the 29th. It is going to be hard for her when she gets home because all of us want to go back so bad.

My weekend is going pretty good. I was at work yesterday and will go again today but I think I made some break thru's with my co-workers. I think they look at me as if I am going to have a seizure at any given moment so they don't think I can do my job properly. I proved them wrong yesterday by doing over and above what was expected of me even though I felt like crap. I was having so many deja vu's that I wanted to go home and go to bed but I stuck it out and did great. I think they look at me quite different now. I am getting a fair shake!

Sorry to hear about your auras. I hope they go away. Did you have a seizure? I hope not! Those are so dibilitating aren't they? Bless your heart!

Anyway, I had better go. I have to write one more post and then get ready for work. Please write soon. We should probably change topics as this one is realllly long...he he.

I will keep YOU in MY prayers also!
God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Emmy Mommy,

Hello and welcome to the board. You have stumbled upon a GREAT bunch of people. This is the best place to find answers that only experience can answer. Not only that but a great place to let out your frustrations and help people and get some new ideas. These people are great! I love it here and I could never ask for a better bunch of people.

We don't have a 'circle' to the point where you have to ask to become a part. We welcome new people like they have been here for years. Please don't feel like you are intruding. We value your experiences as much as you (may) value ours. Sooooo, WELCOME!!!

I do have 2 types of seizures. I have partial complex and simple partial. No medication that I have taken yet has helped. I have taken Tegretol, Keppra, and now Neurontin. Ok, only 3 but still nothing has worked. http://www.healthboards.com/ubb/frown.gif Keppra was the worst for me. I had severe depression and anxiety to the point where I had one or two suicidal thoughts. I would never do that (selfish) but still....I can't believe I would even think that way. YIKES!! What other type of seizures do you have other than the gran mals?

Let us know more about you! I would love to talk some more but I do have to go to work. I look forward to hearing from you soon.

God Bless,
KittyMom http://www.healthboards.com/ubb/wave.gif

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Good morning emmy mommy & kitty mom!

Emmy mommy, I'm glad you posted, this board has been wonderful for me in gaining new information and also finding people that can understand what I am going through.

I am glad your baby is healthy and wonderful! I understand completely, when I tried to explain these as a teenager to my mom and my neurologist, they both tried to convince me that it was part of puberty, growing up, etc....which I KNEW it wasn't! I knew other kids didn't have this. Plus, I had a grand mal, so you would have thought when I explained them to my neuro he might have done a bit more checking!!! My neuro talked to me about surgery, and at this point, I would give it more than a second thought, not having to take meds and no more seizures would be wonderful!

Kitty mom, hope you are doing okay today, except lonesome for your daughter! I have had a few auras but no more seizures yet. Since the meds aren't working, has your neuro said anything about the surgery??? What mine told me is if the MRI finds scarring, then they could remove that, thus eliminating the seizures. But no scarring, no surgery. I still would like to see a epileptologist because I know they would be more specialized in treating this.

Hope everyone has a wonderful day!

Amy http://www.healthboards.com/ubb/smile.gif

Amyd and emmy-mommy,

Hello ladies!! I am feeling a bit better today. Yesterday I was so scatter brained that it was embarrasing! I was at work too! I am in retail so this was quite embarrasing when you are trying to hold a conversation with someone and you keep saying, "Uh, uh, I'm sorry. I'm on medication that makes me a bit scattered at times and I just forgot the point I was trying to make. Oh Yeah! What I was trying to say was.....". That is horrible! I ended up telling about 4 people yesterday that I had "E" and they were shocked. I guess they thought that if you have "E" you don't hold a job and you are always having seizures. One of the ladies that I was talking to knew me from being in there so much and she said that she would have never guessed. She said that before I told her what type of seizures I had she never would have known they existed. People are usually pretty ignorant to "E". They think it is all gran mals and you would never be able to have a job. Strange! It is only 5:40 am here now so I am not sure how today will go but I have high hopes!

I have only been on three meds so my option for surgery is non-existant. I don't know if I would really want it. I know I am ignorant to what the surgery does and the success rates but I just don't want someone messing around up there in my brain. It is such a complex thing that I am affraid that the slightest wrong move and you can forget it. Ignorant huh?? I know I am when it comes to that so don't listen to me. Many people want that option but I am just not ready yet. My MRI didn't show scaring so I didn't even discuss that with my Neuro. Mine just showed that I have a small throat. WHOOOPIE!! Ha ha

Amy, can you find a epileptologist in your area?? I don't have one here but there will be one when I go for my long term EEG in Tucson. That is why I can't wait. I will have access to him (epileptologist) 24/7 and I am going to use that for my advantage. I am going to see if he can't come here to my town once a month as so many doctors do. I live in a rapidly growing town (population 53,000) and many doctors come here from Las Vegas and Phoenix. We have a hospital and an abundance of GP's and such but when it comes to the rare specialists like an epileptologist, they fly here once a month to see patients. I am hoping he or she will. You should try to see one. They would be good for you I am sure.

I am so glad that you have been seizure free for so long! I am crossing my fingers for you every day.

emmy-mommy, where are you girl??

Here is to both of you having NO SEIZURES today! (I take it one day at a time)

God Bless you both,

KittyMom
P.S. It is going to be a good day!! You should see how beautiful this sunrise is! Where is Hallmark when you need them!? ha ha

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

I have only recently found this site and it is so good to know that I am not alone.

I have been having seizures for 2 years and I am currently on Keppra.

I have so many questions.

How do you cope with the feelings of intense fear or dread because I too have had suicidal thoughts rather than continue with the feelings?

What type of hallucinations do you have?

Do you hear sounds/voices and are they inside or outside of your head?

Does anyone else get pins and needles in their hands?

I would like to hear from anyone because sometimes I think I am going crazy.

Welcome to the board Peggysue!

You are not alone, I feel the same way, as do alot of other people on this board. When I first went to the doctor, I was so terrified because I had NO idea what they were. The deja vu and hallucinations are the worst. I have never been "suicidal" however I have had suicidal thoughts several times because when the seizures happen, they make me feel so crazy, and I hate the way I feel and I really feel like I am losing my mind. (This is hard to explain to someone that doesn't have what we have!). Sometimes I hear voices, for the most part, I feel like I go to a "far off" place and that I can see the people around me, but they can't see me. That's where the panic kicks in because sometimes I feel someone else is in this mystery place and can get me. One I had I thought my grandparents were in the other room talking to me and trying to get me to come in there and I couldn't move(my granddaddy passed away 15 years ago), when it was over, it scared me so bad that my mind was working that way and as always, have the confusion that lasts about 30-45 minutes. The best I can explain mine is that when I have one, it's almost like I am in a strange dream, and they are so bad intense that this is the point that I wish it would all end so I don't have to have another one. When I have them, I try to focus on not talking because if I do, I just say nonsense and no one knows that I am having one. My boyfriend can tell now when I have one. He will tell me things I say to him during one, and of course, I don't remember a thing when it's over.

But this board is amazing because I have found it wonderful to talk to other people that have this same thing, and we can all understand each other.

Please feel free to post anytime, and I will be more than happy to answer any questions you have as best I can! I know how frustrating this whole thing is to you!

Amy http://www.healthboards.com/ubb/smile.gif

Hello kittymom! I am fairly close to Dallas so I am going to check for an epileptologist in the area...I just feel that I could have better luck. I had an EEG this morning and feel like I got more information from the tech and he was so much more patient and helpful than any doctor I have seen!

The Lamictal is working fairly well so far, I'm still in the process of building it up. My face is breaking out with pimples, so I'm not happy about that! But then again, it could always be stress! I'm thinking "I'm 32, I shouldn't have to have acne anymore!"...haha http://www.healthboards.com/ubb/smile.gif

Hopefully my MRI will be this week as well, I'm ready to get the testing over with! Then, we'll see if there is any scarring or not. I haven't decided if I want them to find any or not!! As nice as it would be to be off medication and no seizures, I don't know about having my brain operated on!

Talk to you soon!

Hugs to you!
Amy http://www.healthboards.com/ubb/smile.gif

Hello Peggysue,

WELCOME to the board!! Amydianne has already given you the formalities on how terrific it is here so I will save you from reading that again. She is right though, you won't find a better place!

From the UK huh?? I used to live out there. My husband was in the USAF. I loved England!

I too have the intense feelings of fear. Mine come with my deja vus. I have this feeling of deja vu and then out of nowhere and for no reason I get scared! Horribly scared!! I don't ever know why or what I am scared of....I just am! I just close my eyes and start praying. It helps me take my mind off of it and I am also letting God know that I am at it again...ha ha. I know it isn't an answer really but it works for me.

I only had suicidal thoughts when I was on Keppra. I had clinical depression when I was taking that. I HATE that medication. I was evil and ugly. I snapped at my family for the smallest things. I didn't want to go anywhere or be home either. I wanted to sleep but never could shut my mind down long enough to go to sleep. It was a terrible experience. I am now on Neurontin and that isn't much better. It has increased my simple partial seizures I am sure of it. Maybe your thoughts are coming from the Keppra. One of the side affects is depression and thoughts of suicide. Look into that.

I have had many hallucinations but the one I can remember the best was when I had my car accident. I was driving up a street that has little to no traffic on it. I rounded the corner onto that street and I had this vision (in my mind not in front of me)of being in my two daughters dream. I was standing there in their dream and watching them laugh. I knew I was in THEIR dream but it didn't seem strange at all. I snapped out of it and then the panic hit me. What the hell just happened to me?! No sooner did I think that and I was out. I had a partial complez sz. I ran over a few mail boxes before I came to a stop but I was ok and no one was hurt.

I don't hear sounds or voices so I can't help you there. Sorry!

I did get the pins and needles feeling though when I was on Keppra. I don't know what that is exactly. I thought it was just poor circulation until you just mentioned it and now I think it was from the meds. Hhmmm?!

Don't feel like you are nuts. Read all the posts and you will see that there is a group of people just like you right here. We all have felt that at one time or another. I myself have felt it enough for everyone...ha ha. You are not alone! Come be a part of our family!

Please post often as I would love to hear from you again. Tell us a little more about you. Like, how did you get "E"?? Do you know? How did you find out you had it? Just stuff like that.

I will look forward to hearing from you. In the mean time...

God Bless you,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Amydianne,

Sorry I didn't get back to you yesterday. I think I had the worst day ever. If I didn't know better I would have said that yesterday I was going thru a really bad postictal. I had these overwhelming feelings of love, anger, and fright all day long. Just out of no where I wanted to drive (yeah right) to my husbands work and hug him for hours. Then, ten minutes later I wanted to throw rocks at the neighbors dog for pacing when I went outside. Strange, I know! Then I did finally have a seizure later but all day with these strang feelings. Everything is changing and it scares me. Am I heading for the gran mal?? Never had one but I fear that it is coming. Who knows?!

I am soooo soooo glad that you haven't had a seizure still. You give me hope! Let me know when you find out the results of your test will ya?? Part of me wants you to have scaring so they can correct it and you will be done...and the other part of me wants you to have a negative test so that you don't have to worry about surgery. Boy oh boy, am I strange!!

How do you feel off of the BAD medicine?? Better?? Is the other working for you?? I hope you don't start having seizures. I am praying for you!

I need to go. I am feeling horrible. I have had 20 simple partials in 2 hours so far so this should proove to be an interesting day.

I just thought of something. Do I complain a lot?? I think I do and for that I am sorry! I never would complain at all. I was the woman that when I would get sick I would carry on like normal and never complain about the sniffles or fevers or NOTHING and now THIS!! Please be very honest. I would like to know. Does this annoy you?? I need to know!!
Thank you Amy!! http://www.healthboards.com/ubb/smile.gif

God Bless you dear,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

hello kittymom!

No, no, no, you do NOT complain to much, don't ever worry about that! I understand where you are coming from, and don't worry about it, please feel free to vent anytime!

I have been doing okay, but today I have a HORRIBLE migraine...It's making me sick to my stomach. I rarely get these, but I don't know if I'm just having one and it's a coincidence, or it has something to with changing the medications.

I understand about the mood swings! Mine are going from one extreme to the other...Last week-end I was telling my boyfriend how much I loved him and kept hugging him and being very sweet, and then it would turn in a second! It was like having PMS times 10! hahaha http://www.healthboards.com/ubb/smile.gif I'm sure it's both these meds (I stopped the Dilantin this week-end) that was causing it. And I'm finding too that I'm crying at the drop of a hat! I can't stand all my emotions these days, sometimes I feel good and I want to go out to dinner and a movie and be around people, and then other times I just want to stay at my house by myself. I think alot of that is the stress about what's going on.

I am irritated about my EEG though...The tech that I went to yesterday was SOOO nice, he was so patient and answered more questions than my neuro, PCP, AND ER doctor! He told me that the majority of people with seizures/epilepsy will have a normal reading on the EEG, it's just when they're having seizures that it will show something. I told him that I had gone to the ER, and that they didn't do an EEG, they said I would be referred to a neuro for all of that. My EEG was at a different hospital than the one I went to at the ER by the way. Anyway, he said they have a tech on call 24/7 at that hospital, and had I gone there, they would have been able to do an EEG while the seizures were occuring. It makes me so mad because had I gone to another hospital, they would have been able to do an EEG at an imperative time! Sometimes I get so frustrated with doctors and the whole health community!

Are you feeling better today? I just can't believe you are having so many seizures, I feel so bad for you http://www.healthboards.com/ubb/frown.gif Are they going to try to changes your meds again??

Hugs to you!
Amy http://www.healthboards.com/ubb/smile.gif

Thank you for the replies, it was wonderful to hear from you so soon.
Well, my story so far.
It all started approximately 2 years ago for me when I eventually told my Husband that I was hearing voices and seeing things, I had butterflies in my stomach along with a rising and sinking feeling. I felt terrified all of the time, could not concentrate and had lost a lot of weight.
My Husband rang the doctor and I was admitted into Hospital that day, Halloween of all days, this was the start of months of hell for me!!!
I had an EEG at Christmas 2001 but due to the holidays and a Doctors illness my results were put at the back of my file and not looked at properly.
With the symptoms I was showing. –deep breath- (hearing voices, seeing things, chewing my lips, pulling at my hair, staring into space, wandering off day or night with no memory of how I got there when I “woke up”, saying the wrong word, feelings of extreme paranoia, that everybody hated me). With no proof of what it might be, they tried every anti-psychotic drug available, which of course had no effect.
I was discharged in February because they couldn’t do anything for me and to be honest I was grateful to be out.
The inevitable happened in April, admitted to Hospital, same old routine different drugs.
My luck changed in August, when my Consultant wanted to refer me to a Psychotherapist, in order to give a medical history my Consultant had all of my notes out and discovered the EEG result!!! This showed that I had bi-temporal lobe epilepsy, seizures in both left and right temporal lobes.
I have had 2 CT scans and an MRI, all of which showed nothing out of the ordinary, so nobody knows why I have TLE.
At first I was put on Tegratol, up to 1600mg/day but the toxicity of it was affecting my liver.
When I first went to see the Neurologist I was put on Keppra, now at 2000mg/day and it has definitely helped me but after reading your replies I wonder if it is the cause of the depression I feel.
Please don’t laugh with what I am about to write.
When I have visual hallucinations I see a little “Gremlin”, he is all grey and sits and stares at me.
My dreams are so vivid that when I first wake I have to check that I am awake.
I am currently waiting for my second neurological appointment to come through to see if anything else can help me.
My third EEG showed the seizure activity had got worse even though I was on medication.
I lost my driving licence, which also meant I lost my job, which I loved.
I would still love to hear from anyone about details of their seizures and how they cope and how I can start to rebuild my life.
Now I know that I am not alone this long tunnel is not as dark and the light at the other end a little brighter

Amydianne,

Please read and respond to the post titled, "Porkette please read and respond" by LisaT. I miss you and want to know how you are doing. I have to go. PLEASE WRITE!!

God Bless,
KittyMom

Wow, reading this is amazing. I've been diagnosed (and 'undiagnosed, depending on the doc) since 1986- have been on Dilantin, Tegretol, and Depakote, but Neurontin has really made a huge difference. I've got CPS, and a lot of autonomic symptoms, along with a long post ictal period. I turn blue, get ice cold, get blotchy stuff on my chest, my heart rate and bp go up, and then I'm out of it for ages. Wake up with a bad stagger and messed up speech- basically I look drunk. I'm a nurse, so this is NOT an asset!!! It's so good to finally read about others with similar experiences.

Hi Peggy, and welcome! I too hear voices in my head. I will think I am hearing someone talking or music playing and there will be noone around! The other day I was at my boyfriends house and asked him where the music was comming from and he just looked at me like I was NUTS!!! And until now I thought I was! I also see spots, it got really bad there for a while until they changed my meds. I'm now on Keppra and Depakote. I cant remember the last combo I was on. When I started the Keppra/Depakote combo I noticed the numbness and tingling in my fingers and toes.

Sorry I haven't written in a while, but I haven't been doing very well the last few days. My wisdom teeth are coming in so I've been having some pretty bad headaches. I also had a gran mal seizure today, So I will have to call my neuro tomorrow and tell them they may need to change my meds AGAIN until I can get to the clinic next month.

Hope all you are doing ok!!! Talk to you later.

emmy mommy,

Don't have the doc change your meds due to one seizure. I know they are bad but you need to let these new combo of meds work first. You need to let them work 6-8 weeks before you will know if they are doing anything for you. Don't panic!! You have to remember that if your teeth have been giving you a hard time then that could be a factor also. Please don't jump the gun and say you need your meds changed.

Write soon and I hope you feel better fast sweetie!!

God Bless You,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Dear Peggysue

I am new here to. I feel the same experiences you feel such as hearing things no one else hears, seeing things dejavu, dreaming vivid dreams(that sometimes come true) I feel like I here but no here even trying to post on this board. So if I don't make sense thats why. I probably have 20-30 episodes a day. I have severe panic attacks, paranoia, etc... I am seeing a therapist just to be able to deal with this disorder and day to day living. I am afraid to drive, leave my home "my safe place" still somehow I manage to force myself to drive and go to work. No one seems to understand. My husband is very supportive and tries to be understanding, but still I know he worries and feels helpless.

I feel lost most of the time. I feel like months & years of my life are blank. I can't remember yesterday let alone last week sometimes.

I have a great neurologist who is trying everything to get me dejavu and dream free. I am currently on Keppra 800 mg. qd and Lamictal 400 mg. qd.

I feel like I am reading a book that I have written in everyones words that are posted here.

Tinker-35 years old, lost and confused.

Good morning Tinker!

How long have you been on the medication?? I'm so glad you found this group, it is full of wonderful information, as well as people that can understand where you are coming from. I hate when I have my seizures, I will stay dazed and confused for at least three days, and I hate the intense dejavu and paranoia. I think people are there that aren't and am tired of the things it does to me in my mind. My boyfriend is very supportive, but it's so hard to explain to someone that doesn't have this what it feels like! Reading this board has been better medicine that what the doctor has given me!

Are the seizures getting any better with your med's??? I am so sorry you are having so many. When my "round" comes around, I will usually have around 10 a day, and then by the last day it will get up to about 40 smaller ones sometimes in a day, and they play with your mind so bad, but make you mentally exhausted.

Glad you found all of us, and hope reading everyone's posts will give you some comfort.

Hugs to you,
Amy http://www.healthboards.com/ubb/smile.gif

Hi Amy

I am so glad to hear from someone out there who understands. I am having a lot here lately. I started Keppra 400 mg. twice a day on Saturday. I had been on Lamictal 200 mg. twice a day for about 2 months now. My neurologist added Keppra after I had a bad seizure while getting my eyes examined because I do not seem to have any peripheral vision and have trouble vocusing. My exam was normal, which I don't understand. During the exam checking my visual fields I had one. He stated I probably had a light provoked seizure, like when I was driving behind a wrecker one day and had one and luckily got pulled off the road and did not know where I was or how long I had been there. My mother is the hardest to deal with. We are so different and she does not understand and I feel like she just dismisses my feelings of what I am going through because she does not understand. I feel stupid and uneasy when I am around her, which in part is why I have more when I am around her because of the intense anxiety she brings to me. I found out she was not my birth mother not long ago, I am 35 years old, imangine the feeling of that. I seeked out my birth mother who rejected me again, but I have started a relationship with one of my aunts. Everyone turns to me for help, I have so much pain and stories of other peoples problems, which I am constantly trying to fix that I seem to neglect my own problems. I feel so overwhelmed just trying to make it through the day. I am very much a caregiver to anyone around me, which may be my maternal instincts coming out, since I have yet to have any children of my own. I know I am probably talking in circles, which I find myself doing a lot. Please excuse me. I have held so much in because I have felt totally alone in all of this. I just wish the disorder would go away because I have so many other issues I already cannot deal with.

Tinker

Tinker-

I am so glad you responded! I understand where you are coming from, believe me. I have a great boyfriend who is very supportive, but as far as my family goes, I don't get any support really from them. I know it's impossible for a non-seizure person to understand what are seizures are like and how they affect us. I have tried to get my mother's support through this with no luck...she is always positive, but not quite understanding. Her attitude is basically "deal with it and be done" so to speak. She honestly won't even talk to me about it, and I can't seem to get her to understand how scared I am and that I really need my family right now. But, on the flip side, I have an aunt that I am very close to (I had to reply once I saw your post on that!), and she and my boyfriend went with me to my neuro appointment and she is there for me. I try not to get discouraged about my family, I know they are only acting the way they know, but I know how frustrating it is!

I don't know if it would help or not, but long story short when I first went to the doctor about my seizures, it literally took over two months to get anything done! During this time period, I was nervous and anxious all the time, and would start crying for no reason, which was all the stress from everything. My MD put me on Zoloft during this time period, and honestly it seemed to help, I don't know if that's something you would be interested in, but thought I would pass it along to you.

Please feel free to write anytime http://www.healthboards.com/ubb/smile.gif

Amy

Dear Amy

Wow, you really do understand I feel like I have found a best friend. My mom is like that also. She says "You just need to go on with you life, why can't you get over it, it could be worse, you could have cancer or something worse, this is not the end of the world". She does not understand that I really do try to do that. I just can't get a grip on it right now because there is so much else going on in my personal life. I have always been there for her and everyone else. I am never critical or opinionated towards anyone who shares there fears or problems with me. Why can't she be like that, thats all I want. Of course she will never understand unless she experiences what I do but she can be a little compassionate, you know what I mean? Anyway, I was driving to see my grandmother today and I remember pulling out of my driveway and the next thing I know I was at a stop light and had no idea where I was at. That is the kind of stuff that really scares me. I also kept hearing a train today, but there was no train in sight. I am afraid to tell any of my family members I hear things because they might want to put in a pysch ward. Do you ever feel like that. Maybe that is what I need to be completely away from everyone and everything until I can get a grip on this? My doctor tells me I need to eliminate all the stresses that I can, but I cannot even function in my brain to begin to do that. My mind never stops. I am do not like being out of control like this. I am obsessed with trying to figure out what has caused this to happen to me. I have had no trauma to my head or anything like that. My MRI was normal. I feel like no one really knows whats going on but has just classified me as having complex partial seizures because they do not know what is really wrong with me.

Tinker

I understand! My mother reminds me that I don't need to talk about it so much, because people will get tired of hearing it. The last seizures I had were SO bad, my boyfriend had come to pick me up and we were in his car, and all of th sudden one hit...when the worst part was over, I could still kind of see what I was doing, but was in a dream state still...I remember trying to open the car door, not because I wanted to hurt myself, but because I was scared. My boyfriend said I kept saying "SHHH", and then I told him I had to go because they were going to find us??? I don't remember that, I just remember my hand on the car handle. That was the scaredest I have ever been because that's when I was like "I can't trust myself alone anymore"...I would never intentionally hurt myself, it was just the seizure. I tried to explain that, and my answer was "Well at least you're safe NOW"...I wanted to scream "I TRIED TO CRAWL OUT OF A MOVING CAR!!!!!". My boyfriend, my aunt and some of my closest friends are so supportive, but sometimes I just really still need my "mommy", but I know that's not going to happen. She's there I guess as much as she thinks she can be, but unfortunately some people just don't realize that we really need them sometimes. They were on vacation when I had my first neuro visit, and I just kind of felt alone. Imagine, I'm 32 and wanted to cry because my mommy wasn't there! I just can't make her understand how scared I am, and if I tell her how bad I feel then I pretty much get "Well complaining will only make it worse!"....I don't mean this hateful, but I really wish that she and your mom and anyone else that is so convinced that they "know what we're going through" could have just ONE of our seizures, and ONE DAY of our med's and see how they feel!

The bright spot in all of this is that this message board is wonderful, and I hope that I can at least brighten one person's day and give them any kind of advice or answer any questions that will help them.

Take care, and please feel free to write anytime, I will always write you back http://www.healthboards.com/ubb/smile.gif

Amy

Tinker,

Hello and welcome. I know you got the run down on how great this place is and I bet you know first hand already. You found someone who is just like you and you don't feel crazy anymore. Well, guess what? You have another 'someone' who is just like you. We have all felt 'crazy' until we found this board.

Amyd, Grumps, and I all seem to have the same EXACT things happen to us yet we are all on different medication. Funny Huh?? This whole place is full of people who will understand and give you their experiences to make you feel better about all of this "E" stuff. I love this place! Heck, I NEED this place...lol.

I am 32 and my seizures came out of no where also. Looking back I could tell you exactly when they started but I didn't know what the heck was going on. In February 2002 I was doing dishes and had this strange feeling (I was living in NJ). It was bothering me so much that even at the risk of sounding like a loon I called my friend and asked her if she had ever felt this feeling I had. I felt as though everything in the world made sense. Everything was clear and made sense...sort of like I was being taken to heaven or something. Then as fast as it came, it went. I couldn't remember what made sense or the problems that were solved but the memory of the feeling lingered. She, of course, thought I was tired and needed sleep. I could use some more but I didn't think that was it.

Those same feelings came and went for a few weeks when the NEW ONE started. I was getting this sence of deja vu only it was different. I was scared of them instead of ammused by them...hmmmmm?! Those went on for months and increased in lenght and intensity. I found that if I was driving and had one I would have to pull over. I was so scared that I would cry and pray, "Please please please take this away from me!! I am scared! This is not normal!" I felt as thought I was paralized and standing in front of an oncoming train at full speed. It was HORROR!! Then when they would pass I would be scared of having another one. I eventually would start sweating and shaking due to fear.

That lasted, as I said, for months and months. We drove across the country to live here in Arizona to be with my mom who's health is failing. How I made it across country I don't even question. http://www.healthboards.com/ubb/eek.gif After we were settled here I had a few questionable experiences. I was driving my mothers truck to take her home and as I rounded a corner I 'went out' (complex partial seizure). I told her that I didn't know where I was going or what I was doing. She freaked and told me to pull over. I did and when I came to I didn't know what had happened to me or where I was. Weird! The one that made me go to the doctor was this: I was in a job interview and I was talking with this woman about my qualifications when the 'deja vu' came over me. I told myself to stay calm and not let her see that anything was wrong. I did that but then she started telling me about job duties and asking me if I could perform them and the next thing I know I am in the parking lot looking for my car. I remember nothing in between. I don't know how the interview went or what made her let me go. I don't even know if I said something stupid (I am famous for doing that when I am 'out'). I was so scared that I drove home crying and told my husband to take me to the ER. I went and they referred me to my GP. They said that I was having seizures but I didn't believe them. Seizures were the gran mal type only right??? When my GP told me I was having seizures I laughed in her face. When she showed me how many different types of seizures there were I about fainted. Off to the Neuro who said that what I described to him was Partial Complex and Simple Partial seizures. WOW!!

So here I am One MRI, 2 EEG's, Heart tests, blood work, and CAT scans and all show NOTHING!! I have no history in my family and I don't remember ever injuring my head in my lifetime. I think I would remember that. I am having a long term video EEG on the 4th of Aug. and I am looking forward to it. I get to talk to a specialist! I have been on only three medications and none have worked at all. I have been diagnosed for only 3 months but I have the information for someone who has had "E" for years!! Ha ha.

So, you have a new friend who knows what you are going thru. Just stop in anytime and post. The more the better. We would love to hear from you. It is always nice to meet someone who 'understands' you.

Welcome and God Bless you,

KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

Hi everyone,
Thanks for the replies, I love hearing from everyone, it’s so nice to know that I am not on my own.
I feel really paranoid today about the smallest things, can’t shake the feeling that something bad is about to happen but I have no idea what I am frightened of.
Could not get to sleep last night because my “E” was playing me up.
I know what you mean about home being a safe place. Sometimes I feel so frightened I am rooted to the spot.
My Husband is really good and understands why I am so strange at times.
Well the good news is things might be moving on for me, when I called in the Doctors for my meds, there was a note for me to make an appointment because the Neuro had contacted my Doctor.
By the way, does anyone sleepwalk? They told me I did when I was in the Hospital and that it could be my “E”.
After a seizure does anyone find that their skin itches? Mine does and it doesn’t matter what cream I put on, it makes no difference.

Looking forward to your replies.

Peggy,

No, I have never had my skin itch after a seizure. These are all soooo different even though we have the same kind seizures. Weird! How have you been?? Keep posting. You know you can post on other topics too. This one is so long. Anyway,

Gotta get to work. Write some more!!


God Bless,
KittyMom

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Mother of 3 beautiful kids and wife to a Great husband! I love helping others...it helps me grow!

I am very glad to have found this site.

I was diagnosed with Temporal Lobe Seizures a little over 4 years ago while I was in the Navy. I had a lot of bad experience with medications. I was allergic to three different kinds i tried and one of them had me hospitalized for a little over a week.

I have pretty much just tried to go it on my own. Doctors havent been much help to me and the meds have been so horrible.

I thought that only the "passing out" was the only symptom and that a lot of the other stuff is because I had gone crazy after getting discharged and all the stuff I have gone through since I got out.

I get a pension from them and can't drive anymore. I havent had much luck holding down a job either. It has been about nine months since I left the house for anything other than groceries I guess. I quit working. I have been and really still am scared to death most of the time.

I havent talked to a doctor about it because I didnt think it was normal and that eventually things would get better.

Anyway, I am going to call my doctor today. She is probably a little upset as I have missed a few years of monthly appointments, but maybe I could be treated and be normal again.

Hi- Every five weeks for two years I have had complex-partial seizures 3 or 4 times a day and last for 3 or 4 days on top of grand mals that only happen if I get the flu. I wish I could tell myself my brain is playing tricks on me and that horrifiying mental feeling and bizzarre smells for a few seconds is not real but it just doesn't work that way with those complex temporal partial lobe seizures me.

By the looks of my tongue, today hasn't been good....but who knows since I live alone. I've had respiratory infections, including the actual flu, for the last month, with low grade temps....

Your symptoms are exactly what I get..............extreme dejavu........for the longest time I thought I was psychic or something. Dejavu with ridiculous detail..........for example at a stop light....bam dejavu (seizure) because the traffic is in the exact spot....the stores and all of the people on the sidewalks. How is it possible. Also during my seizures I go into full gag reflex, if I had eaten recently there are times when I will throw up the gag reflex is so strong. High exhaustion after a seizure and short term memory loss. After a batch of seizures I can no longer remember how many seizures I have actually had.

I recently had a brain MRI as my mom died suddenly from an aneurysm....the MRI did not indicate any abnormal blood vessels or tissues such as scarring. Not sure if the concussion is the culprit or not.

I have had them since I was about 16............they haven't changed based on hormonal levels. I too had a concussion at about 9 or 10. My seizures cluster as well.

I have not taken meds but I do try to control them as best I can..........if I keep a consistent sleeping pattern, try to avoid stress and eat healthy they can stay at bay for many months. As soon as they start I know that my lifestyle is out of balance.

How long have you been on Dilantin?

Elizabeth

Hello~

I was on Dilantin for awhile (as well as several other drugs) and then got on Lamictal which I am currently on. It hasn't completely stopped them, but so far nothing else has. It has controlled them some, plus I don't have the awful side effects like I did with the other meds.

When I first went to the doctor with my symptoms, I thought they would lock me in a padded cell somewhere, I thought I was going crazy! No one can understand what's going on unless they have had the same thing.

I know that some seizures in people can be triggered by stress, lack of sleep, etc. however I have never had that, sometimes I get them when I'm relaxed and rested, other times I can be as stressed and/or tired as possible and nothing.

I understand the nausea, when I am having them, I don't even want to eat anything because the worse they are, the more sick I get, completely understand that gag reflex!

Hope that helps some! Let me know if you have any questions at all, this board is so great to get answers.

Hello Amy, I too have petit mals and occasionaly gran mals. I know exactly how you all feel after seizures. It's the worst!!!!! I also have auras and that "funny" feeling often before mine. I've had them almost exactly 4 years now. I am on 150 mg. phenobarb. and have a VNS implant (what your dr. refered to). I've had it approx. 15 months and it has helped. I still have seizs. about once a month (that time) but I will usually have one at a time instead of 4or 5 like I used to. I will still sometimes have more than 1 a week but they are not as bad as before. If you'd like further info on the VNS i'd be happy to answer any questions you may have.

Nice to make your cyber aquaintance.

Laura

Hi there, I had this type of seizure undiagnosed for about 18/24 months before the 'biggie'.

it was like a buzzing in my head, like a switch had been turned on, then deja vu and a terrible fear that I was going to die, sometimes, but not so often, I had jamais vu. When it was finished I would get a headache. But throughout all this I could still function to a certain degree.

I could get this several times a day, every day for a couple of weeks then it would go away for a couple of months and I'd forget about it.... until it came back. Dilantin has kept me free from siezures for a while now.