Seizures

[Denisej007]

I recently started going to a nerologist because I was have twitches shortly after knapping. Sometimes I'd catch myself from falling but most of the time I didn't. Anyhow, the law in VA is 6 months seizure free. When I ask my Dr.if she had any advice as to how I could find work. She said "Get a bike." You could have floored me. I take 1500mg of depekote, 800mg of tegretol and 300mg of dilantin. The warnings on all of my mediciations states I should not be in direct sunlight, but it would take an hour in either direction to anywhere  to apply for a job. Plus, I sleep all of the time. There are days when I don't get out of my nightgown because the depression I am fighting makes everthing a chore. I guess I ought to mention the types of seizures I have are grand mal and juvinile myoclonic seziures. My disibilty claim was denied because I was able to beat this condition for almost 18 years, now it is beating me. Why don't I qualify for disibility?
Thank you very much for hearing me out,
Denise of Richmond, VA

[brainpain]

thanks and im here if you need me! its warm and sunny here.my tulips are blooming! been dizzy this weekend,i hate that.let me know how your appt go.my friend died about 3yrs ago,her daughter looks just like her though.i wish you the best.your friend ,brainpain

[Denisej007]

You are still in my prayers!!!

[Denisej007]

I am so sorry to hear about your friend.
I gave the Doc something to think about anyhow.
Raining here!
Have a good one...and if you need me, I am here for you.
Denise

[brainpain]

sorry to hear about your appt with the ol" fart.some doctors think if you get on disablity the $ comes out of there pockets.your lawyer will know how to get around that doctors info.yes doctors do lose $ but alot just deserves it.my best friend sued her doctor for not telling her she had cancer.by the time she found out she had it all over.she died before she got her $.he is still a doctor and what makes me sick is her parents still go to him! anyway im sure you will be approved .i would get p***d off and told him if i can safely go to work then i should be able to drive! neou is the best dr to help you and ease your mind .good luck and be safe out there! your friend brainpain

[Denisej007]

I went to the ol' fart yesterday with a paper in hand. Sec. 12.04 disablity. I said "If you can deny that I am not at least 5 things on that list than you have not been listening."
He started asking me questions from the list and of course silly me, I never read all of the conditions. But the Dr. started scribbling some things down on the paper I gave him until I told him to keep it and to just give it some thought. My lawyers will be requesting some info. from him...and it's not going to look right, if they see that I've been seeing him for 10 years on and off and he only prescribed medicines...they're gonna want to know why!!! I've never talked to a Dr. like that, I got the impression a long time ago that Docs look to cover their butt more than anything...and I can't blame them, some doctors have lost all their life's $$$$ from lawsuits. Anyhow, he will not prescibe dalmane or klonipin to a person that is in my situation. He is afraid, the medicine might interfere with seizure medicine. Next stop....THE NEUROLOGIST...ahhhhhhhhhhhhh
I hope today is a good one for you....Your friend!   -¿-
Denise

[brainpain]

i have a  family doctor that ive seen for about a year.she makes me feel stressed out.she rolls her eyes at everything i say thats going on.i have faucet joint syndrome and i see her watching me at every movement.i had a nerve test done,because my fingers was numb from elbow down.she has them test the other arm to.neuo told me he dident understand why she would do that.i had 10 needle bruises i dident need on the other arm.doctors dont give a sh** any more.i worry she dont understand my pituitary problems .for you to go to a doctor for 10yrs and he wont help you isent worth wasting your money on any way.i need to find a good dr its hard to find one here.i take 0.5mg klonipin my kids call them my happy pills (sad) good luck with your new doctor.best of luck

[Denisej007]

I am taking 60mg of cymbalta, 1500mg depakote, 400mg dilantin, 800mg tegretol and 0.2mg of klonipin (clonazepam) YES! STRESS is the cause, I think.
Well gotta go to see my psych. He told me over the phone the other day, it not going to write a letter of disability...I've been going to him for 10 years. #$% I've gotta start with a new doctor now....I love life!
You be good now!
Denise

[brainpain]

glad to hear you have a way to your appts.uping your dilantin should help.when i had my tumor i was given 400mg insted of 300mg.my problem was stress,when i goy stressed out i would get that omg feeling.after an hour it was over.i know this is a stupied question but when you have your seizures are you under stress?i would almost have seizures when i was and neou gave me klonopin.if your under stress ask for klonopin maybe that would help.cant rember if you said you did or not,but worth a try.its easy to talk to someone who knows what it is and how you feel.its nice to have smeone to talk to that dont roll there eyes when you try to explaine how it feels and why your scared sometimes. im sure everything will be fine and you can get controll of your seizure h*** take care and sounds like you have a good friend out there.your friend brainpain

[Denisej007]

I'm glad to hear that about your Mom. I'm sure it's nothing...well I'm not sure, but I'll deal with the results as they happen. Right now, my problem is getting to places. I'm about to wear my friend out, Pam.  Pam has MS and she is not as mobile as I am. Her left leg drags. But she's a determine little thing. I did hire a lawyer who is going to help me with my appeal. I reported my seizure to my neurologist. I asked if I could start taking the 4th dilantin again. I dunno if that is what I needed but that was the only change made in my medicines. The Dr. wanted me to get some labs done right then. I called the docs at 3:00, they got back with me at 4:30 and the labcorp closes at 5:00, does she think I can fly since I can't drive. I meant to tell her I haven't got that "BIKE" yet..lol!

Having a seizure alone can be scarry. I sent stress signals (text messages) to my ex husband and niece HELP!! but no reply for a while. The hardest part for me was accepting that I had a seizure. All the signs were there, I just didn't want to accept it. Sure I did the crying thing, but mostly I slept. I was almost legal to drive. Today I am a stronger person,  since I didn't have anyone to come to my rescue. So that might be a good thing. I was also in a sitting position when I fell forward, so thatnju8's a good thing too.
Sorry to be so talkive. I enjoy these posts and the people. I don't feel so alone anymore.
You take care of yourself now!!!....and have a good one!
Your friend always!
Denise <----good at typos

[brainpain]

you are a very brave woman.i couldent go threw that living alone,im sorry if that hit a sore spot.but i cant even think of having a seizure and no one around to help.i have grandmal h*** to. i cant imagen waking up alone and scared.wish you had a roomate to help you.hows your back?sorry to hear about your breast issues.my mom just went threw chemo.cancer free for about a year now.hope your biopsy comes back clear.you have enough going on rite now.if you need to vent i will be your vent buddy! hope every thing goes well at all your appts.dont run yourself to thin and take care of yourself!

[Denisej007]

You can vent anytime you want to. That is why I am here. I got your note and thought I sent a "Thank you" but duhhhhhh! I must have forgot. I haven't heard anything about a new dilantin. I do know the last time I got my RX filled the pill looked different but I don't know if that is the new on or not. It's still labeled Dilantin XR kapseals. Why they spell kapseal that way, I dunno. I also received an RX where the pill was all orange. I was   told by my GOOD neurologist years ago NOT to take any generics, which are those purple striped ones. After about a month taking them....here it comes SEIZUREVILLE!!! But the doctors thinks phenytoin is the main ingredient so it show work the same...no it doesn't. I have a whole drawer full of generics. I betcha I can count 5000 that my mail order rx plan filled.  Snowball stayed close to me on Sunday. I was wondering why until I woke up in the floor. I had a  grand mal from all this worrying I've been doing. Now I'm going to the chiropractor because when I fell I pulled my back. I ended up sleeping 18 hours afterwards. I was so disoriented, but Snowballl stayed right there with me. Friday, my ultrasound showed a mass in my left breast, I am supposed to go to the Cancer center for a biopsy. I have a Drs. appt, everyday.....Thanks for letting me vent on you!!!!!!
Snowball, Pissy, Winney and Spanky said "Hi" That is the names of all the cats I have, but Snowball is "THE MAN" lol......take care and I will talk with you later.
Hugzzzzzzzzzzz

[brainpain]

that sounds like some of my family.want to help till i ask then never around.im glad to hear you have 911 if you need it.hope you can find a seizure buddy.sent you a note did you get it ? do you know anything about a new dilantin thats came out?i had no idea till i read someones question about it?ive been on dilantin for so long nothing else controls my seizures.not even the off brand.that scares me.the last seizure i had was after my brain tumor sugery and it was so bad i never want to go threw that again.i know it was because of the sugery that it was so bad but i had aheadache so bad all i did was throw up all day,so sore i could hardley get around.i dont want the new pill.sorry to vent on you but im worred my doctor will give the new one to me.takr care of yourself and snowball!

[Denisej007]

Most of the people I got rides from, don't answer my call anymore. I do get alot of messages while I am away from friends/rides after they know I found one.  They sound concerned and always end the call my saying "Let me know if there is anything I can do?"  Anyhow, 911 works for meeeeeeee.  But I will inquire around to see if someone wants to take the job as my seizure buddy. I never thought about being proactive.

Snowball said "Hi and wishes you well"....Meeeeeeeeeeeeeeeeeeeeeeeeeeeeoow

[brainpain]

im sorry you have to go threw this alone.after your seizures do you have any signs?biting your tounge-jaw brusies-so soar you cant hardley move?i understand you live alone,do you have anyone to take you after your seizure is over?neuo says its just as important to see a doctor after as it is during.even doing that would give proof you are having them more .and about your cat ,i do believe they do realise somethings not rite.if they can sence when a storm is comming why not?we had a cat and every time my youngest was sick it wouldent leave her side.we said it was her protecter.i know what your saying about the dreppresion,my husband would tell me to get over it snap out of it.that just made it worse,idident want to do anything or go any where.it took about 2yrs to get better and alot of its not you.i have daily headaches and anxiety.i think its nice that you can still be friends with your husband.having seizures makes you allways think this ones it.grandmal seizures are very scarry.when i had mine it would last about 5min.and i would sleep all day.maybe if you call someone when snowball comes around when you think it going to happen someone could come and take you to the er.talk to someone you feel comfortable with and ask if they would be your seizure buddy if you have someone you are close to.good luck on your disibilty and take care of your self and snowball.

[Denisej007]

I am with you. People that don't have epilepsy, typically don't understand it. Same way with people that have never been depressed, they think you can just snap out of it and be happy. Unfortunately, I don't have a warning before I have a seizure. I usually have to figure out who I am, where I am, what happened? It's tough. Then I go into a deep sleep.
I also have juvinile myoclonic seizures (JMS) that has led into a grand mal seizure. I have called my husband from my job to say "G'bye" even though we are seperated and have been since 1999, I just want him to know how much I appreciated him while I was living, in case I didn't make it home. He is still my best friend. Thank you for the advice on the ER but I live alone. Maybe Snowball my black cat can be taught how to dial 911...Just a little humor there! I have noticed that he gets close to me before I seiz..and is next to me when I get my senses back.  Is it possible animals know more than we think they do?
Thanks for writing...be careful out there and the best of luck to you.
P.S. It took me two years and 5 jobs to realize I couldn't work anymore. I just filed for disibility this past Jan. 08.  

[brainpain]

im sorry your having such a hard time.do you have seizures while on meds?if so i would go to the er every time it happend.ask for a copy of your report and take it with you to apply for disabilty.keep copys and if you get turned down again,get a disabilty lawer.almost everyone gets turned down the first time.thats how i got passed.but i dont get it anymore my husband makes about 200 to much for me to draw mine.his family gives me alot of h*** because i dont work.anyone without eplisepy just dont understand.they started on me about 8mnths after my crainotomy to work .it caused a lot of stress on me .do you have a warning before you have a seizure?i have learned mine and if i ever feel floaty-double vision-weak-dizzy i know its comming.i stay home and stay on floor.havent had one for years-except after sugery neuo told me it would happen.but i drive all time. wish you all the luck and best of health.

[spastic]

I have a big heart, there are days I am disillusioned but it always passes quickly, I read posts and find myself typing away to them.  Just remember you are not alone in this.  I am here for you.  I have found many friends here and I hope the same for you.

Sending Many, Many Cyber Hugs,

Ada

[Denisej007]

You are such a good hearted person. For some reason your words are of comfort to me.
Thank you soooo very much!

[spastic]

I was replying to your 2nd post and didn't see your 3rd, I'm sorry.  Oh Dear, the black eye sounds awful......  I know it is scary to be out in public when you have these but you musn't isolate yourself and I am so glad that you are here on the forum.  I know you are scared.

A very good friend I have at work has grand mal seizures, I would always know when he was about to have one, I would stick close and be prepared. I worked at a huge retail store and I would grab pillows and put them on the ground so he wouldn't hurt himself when he fell.  I was like his personal medic, he is a dear man, he would be so out of it and he said I was the only one he trusted to take care of him when he had seizures.

The depression I am worried about, it in itself can become a disease.  I get that way too, I just get depressed from being sick and no pain relief.  I don't know you very well but I would like too.  Please keep on talking to me, I hope I can help with your depression.  Hang in there, Denise.

Ada

[spastic]

You don't sound pathetic or pitiful.  Hon, depression is normal especially when you have had a setback.  Don't let this get you down, if you ever need to talk just send me a message.  I know what you mean about fighting the government for disability payments, they want you to just give up.  My advice, hire a disability lawyer and fight it.

Your Friend,

Ada

[Denisej007]

I was diagnosed about 32 years ago. I have a soft spot on the top of my head where the doctors used forcets to get me out. The soft spot never healed. I was pushed into the corner of a sharp table and started having grand mal seizures about two weeks later.
Recently, I was diagnosed with juvinile myclonic seizures (which are twitches that last a tenth of a second) But the depression is what I am having the most trouble with. I don't leave my house due to fear....but I hurt myself around home just as much as if I was out. I am currently sitting here with a black eye from the other night. How I got it, is a mystery.
Again Thanks!
Denise

[Denisej007]

Thank you for your reply. At least I know someone is listening. I don't mean to sound pitiful or pathatic (sp) But I am so tired of fighiting the Gov. I thought I was going to beat the seizure condition because I was seizure free a long time but now depression has set in. I am spending my retirement money and I see no end in sight except for my life.
Thank you again!
Denise

[spastic]

  How long ago were you denied disability?  I know this is a hard for you and I feel for you.  Because your symptoms have changed I would apply again for them and see if your pcp and neuro can help you through all the paperwork.  It is always a hassle, I know but this is something worth trying for again.  Did you apply 18 years ago? Was is disability from work or s.s.?

Spastic