Going out of my mind? New here, need a lil help, MUCH appreciated!

[Kristina112380]

Hi.I am new here, and I want to first say "Merry Meet". MY name is Kristina, family calls me Krissy. I have recently been diagnosed with Epilepsy. I am nearly 28!

I am a mommy of three young children, (9,5 and 4) and I am married. I was Mrs. Independent, until recently. Ok, EMBARRASSING, I was at Dollar Tree, and I was getting camping supplies for my son's 9th bday, Oct 12th. Well, I was walking around the store looking for granola bars, and I felt lightheaded, and like I may pass out. I saw funny things, I couldn't see anything normally. It was like looking through fogged up glass or something. Then like sparkles. Then I leaned back on the shelves, and I woke up in the hospital. As if that weren't enough, they gave me Dilantin (Phenytoin) and the next day, I was having what I thought were dizzy spells. WELL, lol they weren't.They were severe and my brother made me go to the ER and they kept me! They said I was having back to back seizures from the dosage not being high enough. They said my eyes were darting back and forth really fast, and it looked really creepy.

I HATE that my babies saw that! Me, strong mommy, gripping the couch, and crying, and acting like a baby. I cant drive now. I have Tonic-Clonics (Grand Mals) I havent had any since I got out of the hospital, but I have felt like I was going to. I always have a strange head feeling most of the day. I am SO tired. My head hurts. I forget most things. I can't find my words. I hate this!

I apologize for griping so, I just am SO lost right now! I cry and think how do I do this? I feel retarded! (NO offense to mentally handicapped) I don't feel like a good wife or mother. I feel like a burden. I simply exist. While I have to depend on others to take me everywhere, when they have lives of their own. I am thankful to have family like that though. We are close. I just want to run away and hide for a while, gather my composure, get a strategy, and come back normal or ready to fight!

To top it off, the Neurologist I am going to is mean and uncaring. He asked me what I feel, and when I told him the same things I said here, he said I cant blame ANY of that on my Epilepsy or Meds. So, what am I SUPPOSED to feel? What is normal? I feel freaky 24/7 now!

I have enough serious stuff to deal with in my life, and now this? It seems nearly comical.

I am sorry to sound so selfish, when so many others are worse off than me. I am lucky that mine are under control at the moment.
If anyone wants to talk, or ask questions, or ANYTHING, it is Welcome and appreciated. Thank you very much, and maybe one day, I can help others like me and everyone here!

[hawke86]

How you're feeling is just normal when it comes to seizures. We all deal with our seizures differently. It's good to see your seizures are under control at this time.

[Kristina112380]

Thank you, I was beginning to think I was crazy or something. I am crying, and depressed like. I doubt that my Neurologist helps any when he says that I cant blame my "duh" moments on this or the meds. Making me feel like an idiot for even going to him and wasting his time. Seriously rude!
Anyhow, I thank you, and I am SSSOOO glad I found SOMEBODY to talk to that actually understands and can maybe actually answer some questions.
I thought I was just being lazy or something, with the feeling weird all day, with moments of clarity.
I can only say now that you have no idea how mush I appreciate this right now.( sigh of relief) (tears in eyes) lol

[hawke86]

You mentioned that you don't think the neurologist you're seeing isn't helping. Have you considered seeing a different one. I use to have one that doesn't know anything,but the one I have now is the best there is. People from all over the U.S. come to see him. I hope you can find a good one to. Hang in there. Be patient.

[Kristina112380]

I am trying to find one. He hasn't even told me a hint of what is wrong besides Epilepsy! I did the Ambulatory EEG, and still he only read the first half! (He said so) The last half is where I got upset and had a spell. He doesnt know what kind of Epilepsy I have, or what kind of seizures, or anything! I have been seeing hime since Oct. 11th! SOrry, I am frustrated. My mother got in contact with Eplepsy Services, and they were supposed to call me today, but we are going to try and get another Neurologist asap! Thanks.
Krissy

[paradise survivor]

Welcome home Kristina-I mean that in the most sincerest way! This is home for all who live with E and those who care for those with E. Your story sounds very much like mine except I was 37 and mother of two teens...that is enough to put anyone into a tonic-clonic. (sorry, bad E joke) I promise you, you will laugh, and enjoy life especially if you check in here with your new friends! Remember, (ok another bad E joke) education is critical to your health and your family's understanding...there is a lot to learn! Do not be hard on yourself...this is not something you do, it is something that happens to you. Allow those who love you to learn with you and you must learn to accept their efforts, they are feeling a little helpless themselves! Feel free to check in often, oh and we don't grade on spelling. I will be here for you if need, it is a road I have traveled for 10 years now...not the road I would have picked maybe but each day is new and different. Remember if you are upright, it's a good thing and always look for a soft landing

[hawke86]

What kind of seizures do you think you're having? What happens when you have them? Some types of seizures are hard to diagnoise.

[Kristina112380]

paradise survivor,
lol, NOT to worry, I do have a wicked since of humor at times. My brother and I are joking on it already; as per it helps with the whole thing. Thank you SO much! Oh, oops on the spelling, I didnt see that! LMAO Yea, I do have serious bouts with the memory thing! UGH! Too funny!

[Kristina112380]

hawke86,
Well, as far as I can tell, I have lots of really bad headaches, I zone out, but when I have the bad ones I had the "Aura" thing once. I couldnt see well, like foggy, and I was out, they said I had bad convulsions, and I woke up a few hours later. I remembered like WEIRD bits and pieces of it, like I was in some black hole! Anyway, I was SORE and TIRED for a week! lol It was SO scary. I bit my tongue so hard, I bit the edges right through! I couldnt eat much for a few days. The lumps on my head didnt help. But, I think they were Tonic-Clonic. Any suggestions?

[paradise survivor]

Hey Kristina - one thing I should mention is a journal- it helps if you are cronic about writing in it so that you can see trends and triggers..it took me forever because no one told me about that when I was fist diagnosed. It took a very long time but I finally learned to recognize the signs...ok the truth be told I had to learn and relearn and then try not to talk myself out of it, the ol 'yes Virginia, this is an aura and you are about to hit the floor!'. I am either a very slow learner or incredibly stubborn.

[Kristina112380]

Hey Kristina - one thing I should mention is a journal- it helps if you are cronic about writing in it so that you can see trends and triggers..it took me forever because no one told me about that when I was fist diagnosed. It took a very long time but I finally learned to recognize the signs...ok the truth be told I had to learn and relearn and then try not to talk myself out of it, the ol 'yes Virginia, this is an aura and you are about to hit the floor!'. I am either a very slow learner or incredibly stubborn.

) Too funny, sorry,
Yea, I am trying to learn the signs, but also trying not to think every little tingle means I am about to fall out! lol Yea, I actually have a journal I can start with, thank you guys SO much! I will at least rest better tonight. hugs!

[stilldancing_98]

Hey Krissy, welcome. It sucks. I love miss independant. And don't think you are not. And I to have a wicked sense of humor.I am a single mom 43 in the picture I am the one with short hair. Just a good friend .I have a 10 year old with epilepsy to. I remember when I couldn't drive.You are going to be just fine if you keep that sense of humor up. My brothers called me spazz growing up.LOL

[Kristina112380]

LMAO, yea, I threaten my brother that I will have a Spazz-fit on him!!! lol )
Thank you for being here! You guys are my sanity right now, seriously! My husband is wondering what I am laughing at, like I am a looney. He honestly is scared to death, and doesnt understand most any of this. He is so good to me. He cried alot when I was in the hospital. He took care of our three kids, went to work, and still came to see me. Well, nighty, night! I will be back tomorrow, I hope. Sleep well.

[stilldancing_98]

Good night.

[hawke86]

I hope you sleep well tonight too Krissy.

[Meetz1064]

welcome to CWE! And Merry Meet. You've found a wonderful place to be here. Mr B has built us an AWESOME home here.

Ahhhhh. So you have the blessed Tonic Clonics also? I'm sorry. I, too, have those SUCKERS. I HATE THEM. Mine happen only in my sleep, and yes, I bite all the way through my tongue, too. EVERY TIME. Except I end up being like a 2 year old....for a very long time afterwards. And I usually break a bone or two, and some furniture. (Mine are more violent than most).

Here's an idea. Start a journal. OK, it may be a pain in the arse. But, in the long run, it WILL help. Start recording EVERYTHING. What you eat and when; meds (all, including over the counter)--dosages and when; computer, video and TV times--and for how long.....I think you're getting the general idea.

And, if you have a seizure....WRITE IT DOWN. It may be after the fact, but write it down. Even if you have witnesses tell you about it, do it anyway. Include the auras, too, which are actually seizures (simple partial). Keep this running log, and then take it with you to every doctor's appointment. HOPEFULLY, a pattern will start to show up. For some people, a food, or lights are triggers. (Yes, lights, like fluorescent lights are big ones).

The other posters have given you some WONDERFUL advice. Might I also suggest checking out the Epilepsy 101 thread? Check out the link:

http://www.coping-with-epilepsy.com/...lepsy+101.html

Also, take the time to TALK to your kids, CALMLY about the seizures. And TEACH them seizure First Aid. Most importantly--NEVER STICK A SPOON IN A SEIZURE PATIENT'S MOUTH. Not unless you want broken teeth.

My 3 kids, who are all in college now, were able to deal with me having seizures as they grew up. The eldest (Abby) even had to call the ambulance once--she was FIVE--I just took the time to explain it to them CALMLY. And they dealt with it. Kids are resilient.

Regarding your neurologist. URGGGG. Remember. YOU pay THEIR salary. THEY work for YOU. If you're not happy, get someone else. Yes, it's easier said than done sometimes, that is true. I won't argue that. BUT. You DESERVE to know EVERYTHING. No ifs, ands or buts about that.

Feel free to check out all of the nooks and crannies here. There are lots of them to explore. And any time you want to ask a question, feel free. If we don't know the answer, we'll direct you in the general directon to get the right answer. And if you need to vent, we have a Padded Room here for a reason......

Take care,

Meetz

[stilldancing_98]

Kids are the best. My son is amazing. He has called and he is D. delayed. The medics know who he is and treat him very special.You just never know where life is going to take you. Always something to learn and new people to love.Teresa

[Stacy]

Hi Kristina,

I want to welcome you and tell you that your seizures could be hormonal. it's worth considering. The idea of a journal should be taken to heart and kept. I know it helped me with my problems for a long time.

As for the Neurologist, i must empathize with you. I was in ICU for four days (only because they couldn't find a Neurologist to sign me out over the weekend), and was referred to a "GREAT Epileptologist" at UTMB Galveston. We FINALLY got accepted as a patient (after several submissions), and the guy tells me, "Don't drive. Don't take a bath (showers only, you could drown), Don't Cook (at this point I laughed and nudged Bern saying, "So out of the 19 or so meals I cook a week, you're telling me not to use the stove?" I Laughed and told Bern it was all him now. The guy then proceeded to tell me not to use hair dryers, curling irons, etc. It could be a serious damage to me. Here's the best part... He looked me in the face (very seriously) and said, "Do you think you can bring on a seizure for me?" I said, 'Of course I can. You'll have to pay me one million dollars and all my medical bills past, present and future.' He said he wished he had a million dollars to give me. I told him it would not be worth it otherwise. He was dissappointed. Shmuck. He kept asking Bern what my seizures were like... paralysis, or shakey, or bumpy...etc. He asked Bern to please get a home video of it next time I had a set. Schmuck.

Don't worry, All will be well. You need to figure out what is causing your seizures, and how to stop it. For me, it's that time of the month, and stress. Do the journal and read, "The Venus Week". You'll be glad you did.

Keep us posted.

[tinasmom]

Welcome Kristina -

I don't have seizures but my daughter did have Tonic-Clonic seizures and my granddaughter has Complex Partial seizures. I agree with keeping a journal and finding a doc that suits you. We are currently on our third neurologist for our granddaughter and this one is wonderful. Has your husband considered taking a seizure training course. They are offered through local Epilepsy foundations and are usually free of charge. It might put him more at ease if he knows how to keep you safe.

[nana1]

Welcome Kristina to CWE.I have had Epilepsy for over 50 years. Have had many, many meds, but i still am not under control. I have no idea when a seizure is coming on. I have had all the test done and a video EEG to see if i could have brain surgery { i am not canidate}. I am taking Keppra 1ooomg twice a day, lamictal 200mg twice a day, zonegran 100mg twice a day and still having 3 to four a month. Last one i had {oct. 16 } i was lucky i did not break rib only bruised rib and bruised lung, course i do not remembering having it or how i fell. I do not remembering hearning the ambuling arriving at the church to pick me up, do not remember going out of church or going to ambulance on gurny.
I have had 10 different neurologist so far. If one doesnot listen to you, or will talk down to you you should not stay there. This is YOUR body and You know how your body feels. I have finally find a neurologist who listen to me. We sit and talk about meds if he wants to change meds, he will have information on the medicine to give to me so i can look it over, so we both make a decision on weither i go onto another med or up the meds i take. You should be comfotable around your neurologist!!!!!!

Nancy