Epilepsy Support Group for Adults With No Religious Affiliation and No Political Affiliation

I would like to start a support group for epilepsy and seizure disorders for adults who suffer from both.  I myself have epilepsy and know first hand the devastation it can cause on your life.  I know the isolation and fear that comes with not knowing when a seizure will come and how others treat you when you do have one.

I also know how difficult it is to talk to others who do not have seizures.  I would like this support group to be for adults who have seizures and for this group to have no religious, political or other affiliations so that it is a universal support group for people who want to meet others with the same disease or disorder without pressure.

If you would like to make friends, discuss epilepsy and medications, treatments or anything affiliated with epilepsy or just have someone to talk to then this is the group for you.

Nice to meet you fellow sufferer!  Please post and introduce yourself.

Hi Stacey, I had my first seizure when I was 37 or 38. I had received a call at work that my daughter had been in a fight at school and they would not tell me if she was ok or not. I had to go get her and was driving about 80 MPH all the way. When I got there it was my daughter and a good friends daughter that were in there. My friends daughter was cussing ME out over it. She ended up being suspended from school longer because of the things she said to me. Well, after I got home I looked out the window towards my friends house to see if she made it home yet. Just as I looked out her daughter was hitting her. My friend came over to use my phone to call DCFS because she just could not handle her daughter anymore. The last thing I remember was giving her the phone book and the phone. Then next thing I know I am on a stretcher on my front porch with an ambulance in front of my house. It was such an awful feeling, not knowing what happened to you. They kept telling me I had a seizure and I kept telling them they were crazy. Then I seen my friend standing by me and started crying. Here I was trying to be there for her and I had a seizure. I felt like I had let my friend down. I was standing when I had the seizure. My daughter and friend said they thought I was trying to make my friend laugh because I just stood up and started dancing and acting goofy. Then they said I just fell straight back and hit the floor full force. Then I guess my dog cliimbed on me and would not get off me! lol Stupid dog, he was about 100 LBS and my daughter said she had a hard time getting him off me. She said he started humping my leg! lol Anyway, I ended up in the hospital for 3 days for it. I guess they put the IV in the crook of my elbow and I ripped it out. I don't remember doing it though. My husband said he called me after he got home to check on me and I was laughing about it. At that time I had a fear of needles so I could not see myself doing something like that. I was put on two differrent meds and did good for three years. Almost to the day three years later, I had my next one. It was Martin Luther King's birthday and was off work. I remember bending over to pick up my youngest daughters work application. The next thing I remember it had been almost an hour later this time before I became aware of things. I was in the ambulance half way to the hospital. My oldest daughter said she heard the familur thud and came out of her room and I was on the floor and purple with my leg twisted funny. This time I hit my head on the table then the floor and was not breathing very well. My oldest daughter was pregnant and due in the middle of March. She ended up having the baby Feb 13th, something I blamed myself for because I felt I stressed her over what happened. I was in the delivery room with her and got to cut the cord when my grand daughter was born. There is a lot about the labor and delivery that I don't remember because of the seizure. I was sleeping a lot because of it. I was put on two different medications at a higher dose. My new doc said they had me on the wrong meds. I still have symptoms so they won't let me drive. I was put in the hospital for 4 days and was not allowed to sleep. They were trying to make me have a seizure and I fought it. They had all these wires hooked to my head and would come in with flashing lights and other tests. When I felt like I was losing it I would open my eyes and fight it. The doc was not happy but the feeling after you have a seizure is awful as you know and I did not want to have another one. The symptoms I have are staring spells and jerking. I had no idea I was having staring spells. The lady came out of the room and asked if I ever noticed that I just stare out into space like that. Had never noticed. When they asked about the jerking with my arms and legs, I thought it was a normal thing that people do. So, I am now on three different meds for epilepsy and doing ok. I don't like the fact that I can't drive but am now afraid to. I can't imagine if I have a seizure while driving and hurt or God forbid I would kill someone. Something I could never live with. It has been 2 years and 9 months since my last one. I pray to God I never have another one. The feeling after waking up is awful. The type of seizures I have, my brain just totally shuts down. I have no warning before I have one which is scary. I also have lupus which the dr thinks is why I ended up having the seizures. My grand daughter will be 3 in March and she is what keeps me going, makes life worth living. Other wise I was to the point that I did not care what happened. I am so grateful for my grand daughter. In January I usually tell my oldest daughter not to come around! lol She is the one who has been with me when I do have the seizures and for some reason it has been in January. I do feel like I have caused heartache with my daughter because of them and I feel bad because of it.

Thank you for starting this! I like the idea that it is just about epilepsy and no religion or policical stuff being thrown around! lol

Hi Maddie!

Wow this is great that your replied!  You have so much here I want to address so just a short reply here and now to let you know I am going to answer everything here...

Stacey

"Hi Stacey, I had my first seizure when I was 37 or 38"

This is interesting to me..so late in life to star having seizures.  I am 37 in Nov. but I started having seizures when I was 15.

"guess they put the IV in the crook of my elbow and I ripped it out"

I have done this as well as rip the oxygen sensor off of my finger and not even realize I did it.

"but the feeling after you have a seizure is awful as you know and I did not want to have another one."

 I know..personally I feel like I have died when I have one and I am so scared I almost throw up.  I hate when I have a seizure and wake up and someone is in my face saying, "you had a seizure".  That sets me off.  I act like a lunatic then as I am not all the way "there" for a few hours after a seizure.

"So, I am now on three different meds for epilepsy"

Wow..3 meds?  That is a lot.  Your seizures must be very strong.

" I don't like the fact that I can't drive but am now afraid to. I can't imagine if I have a seizure while driving and hurt or God forbid I would kill someone. Something I could never live with."

I understand this..I HATE losing my ability to drive.  I feel like a package that has to be delivered.  But I, like you, understand the dread of hurting someone or myself.

"I pray to God I never have another one. The feeling after waking up is awful."

I pray you don't either but if you do, know that you are not alone in this or the fear of both the seizure and the aftermath.

I had a seizure in Feb of 2009 and got my ability to drive back August 23, and then Sept. 14th of this year, I had another grand mal seizure on the floor of my foyer in front of my daughter and had to go via ambulance to the U of MI er.  Sucked.  So sorry for my daughter that she had to witness it.

I am tired o taking Lyrica as it sucks.  Swollen hands, feet and putting on weight.  Dizzy, headaches and nausea as well.

Your welcome on the religious and political separation as get tired of mixing those with an illness or disease.  I want to focus on epilepsy/seizures..so we can stay on topic.

Nice to meet you..talk to me anytime!  That is why I started this group.

Hi Stacey, Sorry I did not get back sooner. The replies went to my junk mail. lol I just checked it. 

The dr thinks the reason for having the seizures late is because of having lupus.

What do you take Lyrica for? I did take it for about a month for lupus but the dr took me off because of my face swelling so bad. It is just about as bad as taking prednisone! I hate that stuff. I fight the dr on it, she asks me if I want to take it, NOPE! lol When she asks why, well it is bad on your heart! I don't like pain but I don't want to die of heart problems either.

Sorry you had another seizure. It is so hard when you have them in front of your kids! I felt so bad when I had them in front of my daughter. I try not to blame myself for my grand daughter being born early but it is hard at times. I really do miss the driving. I used to think my aunt was crazy, she has never driven! She even went out and bought a car, thinking it would force herself to drive. The car just sat there for years. It is freedom to me. Now, I just have my girls take me to appts or shopping if I go. I loved driving with the radio blasting, windows down. Can't do that when someone else is driving. lol

Itis nice to meet you!!!

Hi Stacey. I don't have seizures, its my husband who does.

In March, 2006, he was at work, and went to move a tree branch off the roof of a shed he was about to move, and it broke off, hit him on the top of his head, and knocked him out. He woke right up, went back to work.  When he came home, he took his hat off and there was a 4 inch long crack in the top of his skull.  Since he didn't even have a headache, he declined the hosptial.

About 4-6 months later, I got a call from his boss. Apparently, my husband was walking through a yard when he fell forward into a fence and started convulsing hard. He ended up in the ER, but they blew him off, saying it was the heat & the fact that he was taking xanax.

After 3-4 more of these...he ended up in a different ER wih a DR that put 2+2 together & asked us if he ever got hit in the head. After we told him yes, he did a CAT scan, and concluded he had post-traumatic Epilepsy.  He put him on Dilantin, which my husband refused to take due to his past liver problems. Went back, switched him to Keppra.

Neither of us had insurance, so it was very expensive each month. Then in September 2007, he was driving, had a large shed on the back of his trailer, and seized while driving. He promptly got fired, and he could not find another job, being scared to drive or do any heavy equipment work.

We applied for disability and got turned down twice, then hired an attorney, who put us in contact with the Epilepsy Foundation. They really helped him out, sendiing him & paying for Neurologists and medications. He was switched to Zonegran off Keppra. The first generic he got (green & white Zonisamide) while waiting for his 6 month supply through the mail worked great. We still waited and was switched to a different generic (red & white Zonisamide) which he immediately had a seizure on. Then the panic attacks started. (When he has his start, mine start..he gets ME all worried & worked up, too!) Thank God the name brand Zonegran finally came. He was on that about a month & a half when he missed his evening dose. The next afternoon, (just last week) he had his worst seizure yet.

BUT this time, he had known something was wrong...he suddenly got extremely dizzy & had the worst adrenaline rush/panic attack I've ever seen, then boom. Down. HARD..Hopefully he will have this premonition the next time, so Ican at least try to get him to a safer place. This time he hit his head on the corner of our kitchen counter. Another CAT scan & more hospital & ambulance bills.

The main problem with Zonegran: we live in Florida...it's HOT 10 months out of the year and this med really messes with one' core body temp...why the doc put hm on such a med is beond me.

Finally our attorney got him approved for disability. Why we have to wait until August 2010 is beyond me. We can't get any answers from anyone. He has so many other side effects or symptoms like insomnia, a consant headache, and panic attacks almost daily & his memory loss is increasing. All from one bump on the head.

When my husband seizes, it's diffuculy to watch, terrifying, and scary. He foams, turns blue, yells out before he drops, and is incontinent. Very violent seizing. And like Maddie...our dogs immediately "attack" him. Not attack...my pit races to his face and nips & licks, trying to snap him out of it...my chow focuses on his clenched fists. It IS hard to get the dogs off while maintaining an open airway.

Now my husband just saw me doing this and he's mad. He says he wants to know nothing about this at all. He is ashamed, embarrassed, and won't go out in public with me because he's afraid of making a spectacle of himself if he seizes. I cannot work now because I cannot leave him alone. I'm scared to leave him home alone, and since he's homebound, so am I.

Our grown sons have moved so far away I have no options except to reach out online for now. Maybe once he gets all his disability benefits, we can get to a REAL doctor for some real testing & medication to find out what's up.

I'm basically here for ME..to learn more & to find out the right things to ask the doctor once we get there..(another new one on Monday).

So...I'm just doing all the research I can for now and I'll be on here ever few days to see what's up. Thank you for giving us a forum to share.

I can't imagine what you all are going through, rock. Don't know what else to call you! lol It has to be awful! I know how your husband feels about not wanting to be out in public. I used to tell people to roll me under my desk if I had a seizure before I lost my job! lol I was fired also due to health reasons. Pretty sad huh? I am still waiting to hear from disability. My last appt with their drs was Sept 22nd. Good luck to you and your husband.

LOL...Rock is fine...since I'm becoming one or the 1st time in my life. (my birthday is in October & I used to play bass, hence, name..)

The scariest time for me I guess was when my hubby mowed the lawn I noticed he wasn't sweating much..(in July...101 dgrees).  He drove to the gas station half mile away, parked at the pumps, walked in, and dropped. What if he had run into the pumps? His license hasn't been taken yet, but I see it coming soon. He won't drive anymore at all...won't hardly even go out to get the mail.

I'll keep in touch here...I wish you luck with your disabilty...and IF you get denied..go straight to a lawyer. We're sorry we waited SO long to do it, since it took a year to see the judge!

I was told I had to stop driving right away. I could not drive for 6 months. I was driving about 80 mph on the way to pick my daughter up. She had been in a fight at school. They would not tell me if she was ok or not. It happened not long after I got home. She had been in a fight with my neighbors daughter. When they got home, I looked out the window and seen the daughter beating up her mom. Her mom and I are friends. She came over to use my phone to call DCFS to come and take her. Said she could not handle her any more. Plus to apologize to me. The school told her what she did to me. She cussed me out at the school when I came to get my daughter. Anyway, I got up to get the phone and phone book for her. I remember sitting down after. My friend and daughter said that after I got up and started 'dancing'. They thought I was trying to make Lisa laugh. Then I went straight back and hit the floor. I did some really weird things. I was paralized on the left side. I was trying to get up. The 911 operator said to let me up so my neighbor helped me up and to my room. On the way to my room I guess I went to the kitchen table and took my hands and tapped the top twice the tapped the bottom twice! lol The next thing I remember was waking up on a streatcher on the front porch. When they told me I had a seizure I told them they were crazy. When I seen the look on Lisa's face I started crying. I was supposed to be there for HER! I felt awful after that. It is such a scary feeling waking up after a seizure. It took me longer the next time to come around. I was about 40 minutes into it before I was aware of anything. I feel so bad for people and their loved ones who have to deal with this condition.

I do have a lawyer now. It did take a year just to get a hearing. I went through Sen. Durbin to speed it up, I have had to cash out my pension and 401k so far and borrow money from my father in law. I just talked to them a few minutes ago. Still no word from the judge. I wish he would hurry up already. I did what he asked me to do! We live in Illinois so you can go through the Sen to speed up the process, at least to get a hearing. I guess you can do that anywere. It is worth a try. Just in case you know anyone else who is trying to get on it.

The wait is the worst. It will come through very soon, & I hope it'll be good news for you!

You said you did some odd things, like tapping the table & what-not...last week when my husband seized...he just gave our dog a bath...it was hot in the bathroom, but not that hot.

Then he went out into the garage to talk to a friend who was over, and then said he got real dizzy.

He came inside to the table where I sit on the computer...took both hands and slammed them down twice, hard. He freaked me out...I asked him what was wrong & he said to be quiet...sat down across from me and (this is a dining room table chair), started rocking like he was in an out of control rocking chair...fast, violent...then shook his head hard a few times...yelled out, (vocalized), sood up, made it 3 steps, and went down hard. This was the worst I've seen yet. Afterwards, he said he felt like he'd been punched in the head & was starting to black out, that's why he was shaking his head. He didn't remember anything else.

Back in May, he had mowed the yard, came in to get a drink, sat at the counter, and all of a sudden it was like he wa totally wasted drunk. He was slurring his words, falling asleep. My son & I were laughing at him and I videotaped him with my cellphone for 6 minutes. He had a dishtowel, and started wiping in circles one spot over & over again. (it was CLEAN)

I called his doctor & he told me it was a sort of seizure, next visit, showed him the video & he confirmed it.

This gets very weird sometimes & it's bad enough where MY doc put ME on xanax to calm myself down...so hard to watch. No doubt in my mind if I wasn't here for the last 2 grand mals he would have died. I had to physically hold his head up, he was stuck between the sofa & wall and was purple, I had to maintain his airway while keeping the dogs off and on the phone to 911...

Last week, his head hit the corner of the counter and landed on a shelf, when the rest of his body was on the floor...had to position him & make sure they did another CAT scan at the ER...

This is why he can't be left alone...last time I did, he cleaned a ceiling fan, seized, fell & broke his ankle. Next time he may not be that lucky.

Thanks again for the talks...it helps to talk to someone who's been through this, too...

The odd things that I do, it is during the seizure. I have no clue that I am going to have a seizure. I have the kind where my brain just totally shuts down. I wish I had symptoms before hand. The last time the paramedics had to chase me around the house to get me on the stretcher! lol They finally asked me to come and sit on the couch to talk to them and then they strapped me down! I had no clue I did any of that. I did not become aware till about 40 minutes after that happened. It freaks me out because after I have the seizure I do things and I am still not aware of things. It is like my brain is still shut off. That is what scares me about being home alone and being home alone with my grand daughter. It will be 3 years in January that I had my last seizure so I am hoping they have them under control. I am on enough meds! I do have symptoms of epilepsy though. I have staring spells and jerking problems. There are times my entire body jerks. Usually it is my arms and legs but it freaks me out when it is my entire body. It is like one big muscle spasm. I really hope they can find out how to get your husbands seizures under control. I can't imagine having them that often.

I am so sorry to hear about your husband and I know it has to be so difficult for you to experience.  I know my daughters recently witnessed my grand mal seizures and it was hard on them and quite scary.  My oldest said the veins on my neck were standing out and I was as blue as a smurf.  

With all of your experiences with you husband ( and I also have violent seizures but no incontinence) I cannot imagine what you must be going through but I do relate to the fear.  I have never had an aura or warning before these last two times which makes it very dangerous to live life not knowing when or where a seizure will happen.

I am glad we have a forum to talk about this and one without any pressures.  Which is why I started this group and was very clear about the title so we can focus entirely on epilepsy..

I hope your husband gets his disability benefits and that your situation improves.  It is hard to be house bound and not be able to drive.  Your husband is lucky to have such a supportive wife.  

I know how he feels about going out in public and the fear of seizing there..I could tell you story after story of places I have seized and how it turned out.  That being said, your husband should not be ashamed at all about having a disability he has no control over.  Life is to be lived and as an epileptic I know that the more people actually witness a seizure in public the more common it will be and the "hide it" stigma seizures bring will dissipate with time like other disabilities.  

Throughout history people have been treated appallingly due to misinformation about epilepsy...and false ideas that somehow we do something to deserve  having seizures.  But time is helping that image to be replaced with medical explanations and that helps us overcome such stigma.

Look forward to more conversations with you and feel free to talk to me anytime!

Warmly,

Stacey

Nice to meet you Rock! (unless you want be called something else?)

Stacey:)

Maddie,

I can relate to your paramedic story as my daughter told me I kept ripping off the oxygen finger reader and trying to rip out my IV but I don't remember this at all.  I always repeat myself over and over too..asking what happened and when they tell me I had a seizure I freak out and get hysterical..every single time...

It also takes me hours to come around...to fully be "there"