Diary of a girl who's just been through a LIFE CHANGING EXPERIENCE!

[Butterfly28]

This may be a long post...I need to get lot of stuff off my chest...this is the only way I can do it. I'm the girl who posted, "Had my first seizure and I'm scared"...I now know why it happened, and I need to talk about how it's been affecting me....

 

Almost 3 weeks ago now, I had my first grand-mal seizure. I know why it happened. I was at a party the night before, had a few drinks and smoked a few joints, and tried my first line of cocaine because I was under the influence, and someone told me, "Oh it will wake u up if you are feeling tired"....stupid me, I tried it and then threw up immediately afterwards....but after that...I was fine...and then night progressed....

 

Didn't really get much sleep, but I managed to sneak in a few hours ond and off.

 

The next morning, I felt ok....I helped my friend clean up the mess from the night before. Then I went home. Chit chatted with my mom for a bit, then went into the shower. I was planning on going to visit my boyfriend that day. Was planning on all the different things we were going to do. I was so excited! I couldn't wait to see him!

 

I was blowdrying my hair, and as I was almost finished...I started to get a choking feeling in my throat. Then that was followed by a numbness in my face... then I dropped my hairdryer...then I went to go say something, and my mouth felt like it was stapled shut.....

 

Funny how plans can quickly change....

 

The last thing I remember is my mother calling out my name. When she looked up, I was sprawled out on the bathroom floor, in a full blown grand-mal seizure. My body going all over the place for what seemed to my mother like a 1000 minutes, but in reality only 2 mins. I don't remember a thing.

 

I wake up to find myself looking at 2 ambulance attendants in my bedroom. Boy oh boy, was I ever confused, and bloody tired and ACHY! "You've just had a seizure Cheryl, and we are taking you to the hospital" - OMG! I thought to myself... A SEIZURE?? WTF?? OMG! Panic had set in...then I wake up again...I'm in the ambulance...then I wake up again, and I'm in the emergency....it was all happening so fast, and I couldn't keep track.

 

The toxicology came pack positive for drugs. I BEGGED them not to tell my parents and my boyfriend. It was something I would never do again. I knew that already....it was one of those "first time things". They assured me they wouldn't. It was confidential because I was over the legal age of 19 (I'm 28 yrs old!)

 

So, I had my CT Scan done....I don't remember much of that either. Then they kept me for 3 days. It was the worst 3 days I could've ever spent. I just wanted to get the HELL OUTTA THERE!

 

My CT Scan showed that I had 2 enlarged sacs of fluid in my brain behind my sinuses. Everyone has these "sacs", but mine were only bigger than normal. The doctor concluded that this was something I may have been born with. The fact that I tried cocaine the night before, TRIGGERED the seizure sooner, but he mentioned it would've happened sooner or later.

 

MRI results after that showed that I had a congenital condition called SUBEPENDYMAL HETEROTOPIA. A condition primarily found in women that progresses over time, starts off with dizzy spells at a young age, possibly migraines, and then in the 2nd decade of life (in your 20's), eventually it turns into seizures.

 

This explains the 2 sacs of fluid in the brain....

 

I thought to myself OMG!!! I experienced ALL OF THIS growing up! I didn't even know it!

 

Now I am pending my EEG results, and I go on every day experiencing SEVERE anxiety afraid that it will happen again. The doctor doesn't know if I have epilepsy or not until he sees the EEG results. He says I am "prone to seizures".

 

The scary thing is, I felt these symptoms (also known as "auras") WAY before I ever tried those drugs. IT always occured when I was blowdrying my hair. I would simply turn the blowdryer off, cough a few times to get rid of that "chokey" feeling, and then continue on. This was something that was going on WAY before I did anything to "trigger it".

 

And to think 6 months ago or more, I went to my family doctor to describe a "lightening" or "quickening" feeling in my head...only for her to say, "Ahh it's nothing".

 

I go on blaming myself day in and day out. But I was born with this. I keep telling myself that. But the anxiety is so overwhelming sometimes, that I'm afraid I will put myself into another seizure! I can't stop thinking about it ....

 

I feel so alone sometimes. I cry alot lately. I argue with my mother because I keep telling her "You don't understand" - meanwhile she was the one who FOUND ME on the floor that day! I wish this wasn't happening to me. Then I think to myself - It could be worse. My boyfriend was diagnosed with testicular cancer last year, and he had one of his testicles removed and has been cancer free ever since. So, YA it COULD be alot worse.

 

It's just the whole "adjusting" issue. I have to adjust to giving up a simple act of independence (driving), and now begin to depend on others to take me here and there....on the same side of the coin, I know it's for my own safety and the safety of others...

 

Ever since my seizure, I've experienced all these weird feelings....dizziness, heart palpitations on a daily basis almost. I keep thinking "OMG is that an AURA? or is it just anxiety? No matter how hard I try to shove this experience to the back of my mind, I SIMPLY CAN'T! I need to get a grip, I know...BUT HOW!?!?!?!

 

I don't want to be the one who feels sorry for herself. I have way to much pride for that. But I feel I am not even the same person anymore. I miss that about myself. I have now become so edgy...so cautious....so fearful of the unknown. I'm usually the one who's the most cheerful, laidback, the one who jokes and loves to laugh, and has wonderful friends. I still try to make light of it by laughing a bit...but I still don't feel the same.

 

I hope I can get a grip soon.

 

Thanks for listening. Your thoughts are welcome.

[HokeyReligions]

Call your doctor or hospital and ask to speak to a social worker. Find out about counseling or groups in your area where you can go and learn about this and how to cope with it, and hear from others who have lived with it for a long time.

 

it's new to you, you will adjust to it and be able to have a happy life and really laugh again. It won't be this way forever. What precautions has your doctor told you to take to help reduce the frequency and severity of the seizures? is there something that you can carry with you should you have another seizure, that will help you to recover from it quickly or reduce the severity? I carry an Epi Pen in case I ever go into anaphalactic shock again (I know what you mean about the ambulance and ER, I almost died last December)

 

You need to educate yourself on this and talk to others because the more you know and understand about it, and what to do should you have another seizure, the less anxiety you will have because you, and those around you, will know what to do. It still scares me to think of having to jab a needle in my thigh if I have another 'attack' but I carry it with me and I know how to use it, and my husband knows how to use it if I am unable. That is at least comforting to have a plan and know what to do. For several months after my experience I was anxious and worried too because I didn't want to go through that again and I was afraid that my anxiety would bring on another attack and that made the anxiety worse - its a viscious circle of worry, but it DOES get better when its confronted and dealth with. Give yourself some time.

 

You really do need to talk to others about this, counseling or a support group that is familiar with this and the emotional impact it has on people.

[lindya]

This is bound to have come as a major shock to you Butterfly. I don't think you can really expect to feel like yourself right now; as you say, you're having to go through the adjustment period.

 

Have the doctors reached a diagnosis enabling them to discuss suitable forms of medication with you? You must have about a million questions right now that you need answered. I wonder if it would be an idea to check in with a forum dealing with these issues so that you can find out a bit more about the possibility of being able to drive again at some point in the future, and the extent to which people have found medication helpful.

 

Obviously at the moment, you're not certain that you do have epilepsy, and I'm sure that uncertainty makes it far more difficult to deal with things just now. Before you can adjust - you have to know what it is you're adjusting to.

 

Take care, and I hope the doctor can come back with a specific answer soon.

[belisam]

Butterfly28 I would like to thank you for posting your experience. It will be two weeks this coming Friday that I had my first seizure. I am 36 years old and lead a pretty boring life. Prior to my seizure I had a full day and productive day at work, ran to the post office during lunch and after work I went to the supermarket to pick up something for dinner before going home to watch a movie and just relax. Well, what we plan and what actually happens are two different things, as you already know. I was standing in the middle of the frozen food section (craving frozen pizza - that should have been my first sign something was wrong) Every time I would try to focus on the products my vision would turn silvery grayish and I felt like I could not focus my vision or brain on anything. I was trying to fight whatever it was that was coming over me, I even put down my grocery basket. I remember shaking my head a few times and saying, come on now concentration just pick something go pay and you'll be home in a few minutes!!!! I don't remember anything after the last time I shook my head.

 

 

When I woke up I was on the floor (and same as you) I had the two ambulance workers hovering over me telling me I was foaming at the mouth (definitely not a good look for me) and that I had a seizure. The lights felt so bright, I was in so much pain, apparently I had banged my head several times. I still have a black and blue mark on my forehead the size of an oreo cookie and I still have a lump towards the back of my head. I was disoriented, confused and I remember actually apologizing because of what happened. I was taken to the hospital and they did a urine analysis, cat scan, chest x-ray and EKG and everything came out normal. The doctors have no idea why it happened. A few days later I had an MRI and that showed as normal as well. I am grateful that all these exams are coming out normal, but I don't feel like myself anymore. I am dizzy all the time and my head hurts a lot too. I am going in for an EEG a week from today and hope that will be able to give me some answers.

 

 

I am feeling very frazzled and worry about where I will be when the next seizure comes along. The doctors say I may not ever have another seizure, but I have had two separate instances after my seizure where I was feeling the same way as I did before the seizure, but the feeling passed. I am also pretty moody and seem to cry VERY easily. I can't watch any movies with drama because I get way too upset and I was never like this. It's not hormones (because I asked the doctor that already) I just want to regain my self.

 

Thanks again for sharing your experience, there is some comfort knowing I am not alone.

 

Belisam

[tablesalt]

Butterfly 28 Hey, Just wanted to drop a line and let you know that if you do indeed have seziures after being on the anti seziure meds for one year and no seziures you will be able to drive legal.

My dad has petite-mal seziures and after trying several different meds they finally found one that works for him sorta like hormones for women you have to find the right one for you.

Dad also has these aura feelings before he has a seziure! The docters tell him that certain flashes of light will trigger the spells certain foods,also people with seziures should never eat citrus fruits, Grape fruit,oranges but grape fruit for sure for they will trigger a spell everytime.

 

Hope this helps I never write on here just browse but today your story made me feel compelled to write.

 

Tablesalt>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>