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

[paradise survivor]

Gee Stacy- I know I live quite far from you but it sounds like we had the same neurologist, I call him dr.putz ( and that is when I am feeling sweet)

[brain]

Kristina!

Glad to have you here in CWE and welcome
aboard! And I can see many have responded
to you already and make yourself a home and
MEETZ has already given you a head start by
providing you a link to Epilepsy 101 if you had
not checked it out already. Make yourself a home
here! Lovely bunch of folks here!

[Kristina112380]

OH MY GOODNESS!
I wake up this morning, and I am feelin ok for the minute, I just took my meds. I get online, and I find so many wonderful notes to me. Ok, now I am crying because I am touched. I know each and every one of you KNOW what I am going through, and you really DO understand! Its like being able to see after being blind!
Honestly, I thank everyone from the bottom of my heart. OH, and they may be hormonal as mentioned, because the last time it happened, I had just finished the day before! This morning, my cat wont get 3 feet from me, the same as before. Ok, now I am gonna be watchin. I thought I was just scatter brained from "that time" or something, which usually isnt this bad. Whew!
I will be writing everything I can down now, as long as I can remember to! lol
You all ARE wonderful here; did I say that already? Lots of love and hugs to each of you!
(I love smiling in the morning!)
Oh, and yes, I did not remember anything for a few hours either. I couldnt even find the BATHROOM! lol ( smirk, seriously)

[sixpack]

welcome Krissy.

My daughter has all kinds of seizures. Usually we have them around ovulation and menses. Hers, lately, have caused injury. If you find that the seizures are catamenial, Diamox is a med that can help that. Also some women find that the birth control pill helps with these seizures.

I've recently started a journal for my daughter.

Welcome on board

[Kristina112380]

Sixpack,
Thank you! I honestly didnt think of that before, about the "monthly" thing, but now that I have ,WEIRD. I feel weird now. lol I found out that I am allergic to BC pills when I was 19. The donctor put me on them but for some reason, I had a bad reaction and kept bleeding. EW. I mean for months! I thank you for your help!
Oh, and I wonder if you could tell me what "unilateral schizencephaly, septo-optic dysplasia, optic atrophy" is. I have never heard of that. ( I am new to all of this, I apologize) It may sound funny, but the words I recognize and may think they are different, sound to me like "unilateral"= one sided?; "schizencephaly"= like Schizophrenia;
encephaly=encephalitis; optic=eyes? lol, sorry, My brain does not compute well today.
The words are familiar, but I have NO idea! Trying to figure things out is more difficult these days, so go ahead, laugh! ( I am at myself) Thank you so much. Oh, and if you can't tell, I love to learn new things!

[Bernard]

Hi Kristina, welcome to the forum.

I think you will find that there are many here in the same boat with you. It's a surreal and wild ride at times.

Make yourself at home here. There's lots of good reading to be found.

[sixpack]

Sixpack,
Thank you! I honestly didnt think of that before, about the "monthly" thing, but now that I have ,WEIRD. I feel weird now. lol I found out that I am allergic to BC pills when I was 19. The donctor put me on them but for some reason, I had a bad reaction and kept bleeding. EW. I mean for months! I thank you for your help!
Oh, and I wonder if you could tell me what "unilateral schizencephaly, septo-optic dysplasia, optic atrophy" is. I have never heard of that. ( I am new to all of this, I apologize) It may sound funny, but the words I recognize and may think they are different, sound to me like "unilateral"= one sided?; "schizencephaly"= like Schizophrenia;
encephaly=encephalitis; optic=eyes? lol, sorry, My brain does not compute well today.
The words are familiar, but I have NO idea! Trying to figure things out is more difficult these days, so go ahead, laugh! ( I am at myself) Thank you so much. Oh, and if you can't tell, I love to learn new things!

No worries about not knowing. It's quite rare and some doctors don't even know what it is. Sad to say.

Yes unilateral meaning on one side. Schiz--does mean split like in schizophrenia. encephaly meaning in the brain. She doesn't have schizophrenia--which means, I think, split mind. Schizencephaly means split brain. Her brain has a cleft or split on her right parietal lobe. Bascially she is missing brain matter. In her case it involves the midbrain that has the septum pellucidum missing. Basically the lateral ventricles don't have the separator (septum). So she is legally blind and opens her to endocrine probs. She's a mess actually. Well actually she is better off than some people with schiz. Some are wheelchair bound and have to be tube fed. Some amazingly only have seizures and live pretty normal lives. It's a crap shoot. Lindsay's schiz is considered 'significant' and that means she has global developmental, motor, emotional etc issues. But, hey, she's still a great kid.

We tried her on two different BCP recently to help with seizures and it just increased her seizures. Not good so off she went on the meds and I guess we'll get to have a lovely daughter PMSing on us. She's very good at PMSing

I'm sure, once you get your meds regulated, you'll get to feeling better. I believe I've read that 70% of people with epilepsy are very well controlled with meds AND live very normal, boring ole lives. I had a teacher friend, speech therapist, I used to work with who had epilepsy. It didn't stop her one bit. In the 4yrs I knew her, I never saw her, or heard that she had a seizure.

[Kristina112380]

Hi,
6pack, sorry, I didnt really talk yesterday. I had a bad morning.... I could SWEAR that I had one trying to come on, but it didnt actually go into convulsions. I felt the aura thing again, and felt SO shaky!Then After the weird stuff, I was tired, and after a while it eased off. Then last night, I couldnt fall asleep until 3am! Now I feel funny. Headache. etc.
WOW, that is interesting to learn about. I have never heard of her condition. Thank you sweety, andI will ttyl.

[darkmarkshark]

I always have a strange head feeling most of the day.

Tegretol did that to me - it turned out i had a mild allergy to it.


With the dilantin and head feeling, I'd be most concerned because dilantin is known for causing your cerebellum to shrink. I'd get off dilantin and on to something else as soon as possible.

I'm kind of surprised you were put on dilantin first instead of a newer medicine

[Kristina112380]

Hi, nice to meet you!
Yea, I was given that immediately, and they gave my the generic of it. Phenytoin. It keeps me feeling pretty hazy all day, like I am high or something.lol He mentioned changing my meds, but when I tried to tell him I felt weird, he blew me off. SO, I am trying to find another Neurologist asap. All he says is that I "Definitely have Epilepsy!" and He will not tell me anything else. He just seems puzzled by me, and it worries me. so, he acts as though he doesnt have time to deal with me.
Really?? Shrink? UGH! lol That is strange! But that is what it seems like. I will have my mom call medicaid for me, and try to get everything straightened out, and get a new Doc. Thank you for your talking with me. I hope to hear from you soon.
OH!, I have a quick question for you. Do you know if it is possible for a seizure to try and break through, and have the symptoms, but not actually go into convulsions? (yesterday, I had a bad morning. I had the Aura thing, and felt REALLY shaky, like I was going to pass out, and saw funny things, just like before the one I had in the store that day, and it passed later, and I felt tired, and had a bit of a headache. Then I was tired. Then last night, NO SLEEP until 3am! I just felt STRANGE all night!) Any idea what happened? Wow, it scared me,lol Thank you again, Krissy

[BuckeyeFan]

Welcome to CWE. I hope you find this place as comfortable as I have found it. Kinda like a home away from home. So come on in and stay awhile. You have met some very nice members and there are many more.

First, I would STRONGLY suggest a new neurologist and possibly an epilepologist if you can. Many of us have had to have multiple docs until we found one to actually address ALL of the issues related to epilepsy. They are so much more than seizures.

I won't tell you not to worry about the emotions/fear because that would be like trying to stop the sun from setting. These feelings are very understandable. Most of us have had them to some degree, plus others that you have not mentioned. This is a mean disorder and the impacts on your life are very real, though not necessarily permanent.

As a 47 year old man, I also urge you to be very open with your husband about your feelings. E can be very tough on our loved ones as well because there is so little they can do to help sometimes. Guys (at least most of us) find this hard to handle sometimes because we have that instinctive 'defender' attitude.

The aura you had yesterday that stopped may have been the meds working. That is how many of them work. They stop the spread of the seizure activity.

I have two comments about the dilantin (I have been on it for 27 years). First, do whatever is possible to get on the brand names, either dilantin or phenytek. The generic phenytoin is one of the worst generic meds for inconsistency and that is the last thing you will want for treatment. Second, dilantin itself is a very old drug and many newer meds are available with fewer side effects. I still take it because it has worked fairly well for me along with keppra and I am simply scared to try to switch.

Lots of hugs to you and your family. I have daughters both younger and older than you and grandkids of 3 + 9. I will think of you the next time that I hug them.

[darkmarkshark]

an aura is a seizure in itself. THough aura's often precede secondary generalization seizures, there is nothing about having an aura that says you will secondary generalize.

I had aura's for years, with no tonic clonic seizures following them. Sometimes several a day.

[Kristina112380]

BuckeyeFan,
Thank you so much. I tried to tell my doctor that I have these "Auras" happen, like quite a few times in a day, some worse than others, like the one yeaterday, that scared me. I am SO glad it didnt happen to go into the other part, because I was alone, and it started in the shower! ( Well, right before, but worse in the shower) I cant believe how even those just make me SO tired! Thank you for your kind words. I DO hope to hear back from you.

[Kristina112380]

darkmarkshark,
WOW, I didnt know that. Intersting. I just wish I could fast forward to getting the whole thing figured out and better controlled. Thank you.

[darkmarkshark]

Do they frequunelty happen in the shower?

Some people get seizures from hot water. You might need to start taking cooler showers if thats the case.

[Kristina112380]

oh, no,lol. They just happen at different times. Like when I get upset. They happen other times too. I am TRYING to figure out if there is a trigger. I find they seem kinda random. That is interesting to know. I always have taken HOT showers. I normally dont have the cold on at all. It relaxes me. I do notice I cant have too much coffee! If I have more than a cup or 2, I get WEIRD and start immediately with the whole Aura thing.

[skillefer]

Hi Krissy! Welcome to CWE. As you can see, a nice group of folks. Meetz hit the nail on the head. Start keeping a journal. Write down how much sleep you get each night, what your eat and drink and how much and when, as well as any stress you're under. If you're drinking lots of coffee, cut back and switch to decaf. Also, write down any odd feelings, auras, deja vu feelings, migraines, or seizures that you might have, as well as how long they last. Also, look for a new doctor. One that's willing to talk to you and your husband. And yes, take your hubby to your neurologist appointments. My neurologist gets along great with my hubby. And he takes as much time as we need in answering questions. In fact, he was the one that told my hubby about Sudden Unexplained Death in Epilepsy. I couldn't. Right now, I bet your hubby is scared out of his mind. He's supposed to protect you and he can't take away the seizures. I'd suggest that he take a first aid course. That way he knows how to help you if you do have a seizure. Also, don't try to be supermom. Make sure you get at least 7 hours of sleep each night. If something doesn't get done, then it doesn't get done. The world is not going to end becuase the laundry didn't get folded. Oh, and think of getting a medic alert style bracelet. I have one that's made of plastic that has an elastic strap. I can remove the strap and put in on my shoestring if I don't want to wear it as a bracelet.

[paradise survivor]

Hey Kristina, I am totally on board with Skillefer's recomendation for the medic alert bracelet. A paramedic friend told me to wear it on my right wrist for eary identification. I even have a medic alert sticker on our car. Some in the group feel it is like wearing a neon sign for E but I disagree having been the 'victim' of some medical oops's so I want them to see the tag LOUD AND CLEAR especially if I am unconcious!E is not my only issue- I had a severe reaction to cough medicine that left me unable to take any opiates or derivitives...so one helpful shot of morphine or other emergency pain med could very well be lights out - game over! So I wear the da--m thing 24/7. Funny though very few people notice it or ever ask about it, and thats ok with me as long as the medical people do, I'm good

[Kristina112380]

Thank you both, and yes, I am trying to get him to athat. The Epilepsy Services has a free program to teach my family and friens first aid for it. Yes, he is afraid! He just doesnt talk much about it. I can tell though. I want a bracelet for it, but I am having trouble finding one. I can't afford the pricsy ones, and I have NO idea where to get an ID card or just a simple bracelet. I made a card on a piece of paper, but I kep losing it, because I dont have a purse!lol OH well, We will get it. Thank you both.

[Bernard]

... I do notice I cant have too much coffee! If I have more than a cup or 2, I get WEIRD and start immediately with the whole Aura thing.

Caffeine is a stimulant. It messes with your normal brain chemistry. It is a fairly common seizure trigger. Based upon what you wrote, I would highly recommend avoiding it. If you continue taking it and provoking seizure activity, you run the risk of strengthening the pathways/channels for that seizure activity (a process called kindling) that may in time lead to increased (or stronger) seizure activity (even without the caffeine).