Am I Crazy - just need to talk to someone who has or is having the same problems

[MaeDae]

Hi everyone. Im new to all of this, seizures that is. I never heard of onset, partial, clonic, tonic seizures. I was only familiar with grammal seizures. I am trying to find someone to talk to about my experiences, it still has not been confirmed by a medical professional that i am having onset seizures, but because of their lack of concern or interest i have set out to find the answers myself. If you read my homepage? i give detail of what i have been experiencing and its getting worse. I looked up all of these symptoms after I was places in the hospital due to "Altered State:. I thought for sure they were saying that I was crazy. I feel crazy tho. I know some of you experience seizures on the worst possible level, and I am sorry to hear that, but can anyone share with me if you are expereincing onset seizures. Im scared, I don;t know what to expect next. I was driving one day and I ended up almost to my destiny without remembering how I got there (a 10 minute ride). I pulled over to the side of the road and cried. I could have killed someone or hurt myself. Im at my witts end. The doctors told me before leaving the hospital after my crainiotomy, that I could experience seizures, but they never said what to expect.

 

[Nakamova]

Hi maryltyme, welcome to CWE!

I'm sorry you are going through this; the doctors that performed your craniotomy should provide follow-up care and information to help you with the seizures.

Here's some basic info: "onset" seizures, just means that they are they are newly onset for you, not a pre-existing condition. Grand Mal seizures are the ones that most people are familiar with -- the kind where the person has convulsions and loss of consciousness. They are also called Tonic-Clonic seizures.

There are other kinds of seizures called Simple Partials and Complex Partials. Simple Partials (also called auras) take the form of strange sensory symptoms -- things like an unusual smell or sound or feeling. Complex partials involve only partial loss of consciousness -- that sounds like what happened to you when you were driving.

I urge you to contact your neurologist and ask for more information about your condition. Have you been prescribed medication for the seizures? Do you have any questions about that? Write down anything you are unsure about and make sure they neurologist makes things clear for you.

And feel free to check back here -- we'll try to help fill in the blanks where possible.

Best,
Nakamova

 

[stormydys]

I am not a moderator or a doctor but I have had seizures for years , here's a tip : names of seizures are always changing , don't sweat that, when it comes to how uninterested a doctor appears, well thats another story , in my case its always been they don't know and really are just as confused as you, try to see a different neurologist that listens and gives you as much input as you give them, its always helpful when the doctor knows more Are you still driving ? , I would definitely take some advice from Nakamova.

 

[MaeDae]

today i had a cta with and without contrast done, the tech said everything looked ok, im sure she wouldn't tell me either way. I will see the neurosurgeon on Monday. I have not seen him in a year. I have written down as much as i can remember about the strange experiences ive been having. I have this very unnerving feeling that he will not have any answers and that he will refer me back the neurologist and I will start this wicked journey all over again. Have you ever been tired? My family and the few friends I have, have but all had me committed or relocated me somewhere far far away. I will post on Monday after seeing the dr. I can't remember if I felt better when taking the lyrica or not, but if he sugest or prescribes it or anyother med, you can rest assure im taking it! Thank you for listening. I will also discuss the driving incedent (spelling) with my dr. I hope and pray he tells me I can continue to drive. I need my job. My boss, thank God, has been very understanding.

 

[C0urt]

good luck if nothing else

 

[Nakamova]

yes, good luck, and keep us posted.

 

[13rabbit]

I can empathize completely with what u are going thru. I've had temporal lobe epilepsy since childhood and simply thought that I was slowly losing my mind. Boone knew what was wrong with me until I finally got help and found out what was happening. I also would have moments where I wouldn't know how I had gotten somewhere. Additionally I would experience weird feelings that I couldn't explain. I finally got on a good medication, can drive, and am getting ready for graduate school. It will get better. Don't give up, and if a doctor is bad keep looking. It took me 4 to find a good one.

 

[Evie]

I can empathize completely with what u are going thru. I've had temporal lobe epilepsy since childhood and simply thought that I was slowly losing my mind.

It's the "losing my mind" part that's so unnerving. On some level I'm always fighting the suspicion that I'm just crazy. It was a lot easier to have the kind of seizures that make you fall on the ground and flop around...everyone knows what that is and people are very supportive. But when you say you have to leave work because you can feel an imaginary hand on your back and hear voices under the cabinet and you can't stop crying, people just treat you like you're nuts.

 

[stormydys]

It's the "losing my mind" part that's so unnerving. On some level I'm always fighting the suspicion that I'm just crazy. It was a lot easier to have the kind of seizures that make you fall on the ground and flop around...everyone knows what that is and people are very supportive. But when you say you have to leave work because you can feel an imaginary hand on your back and hear voices under the cabinet and you can't stop crying, people just treat you like you're nuts.

I have never experienced feelings like this just the tonic clonic or grandmal seizures , I can't imagine what that feels like , they barely tolerate seizures more common with out condeming you or saying hurtful things , I put blinders up to the ignorant people in my life in order to keep my own sanity I don't need shallow people looking down upon me.

 

[13rabbit]

I have had the exact experience u are talking about. The thing is, if people are not being supportive they probably aren't worth your time. I had people tell me that what I had wasn't epilepsy because I don't genre had full seizures only partial. They still suck and make life hard but I can get thru it! And so can you! You aren't crazy, you mind is sending electrical signals and causing these feelings, its nothing bad about you. Everyones minds sends signals this way, ours are just a little overreactive lol. I don't want to push meds to hard because other things like relaxation techniques, getting enough sleep and exercise all can help too, but when I'm having bad auras ( which are actually seizures) atavan has saved me. It has made it so I can go to school during my period, my seizures get bad during period. At other times of month I don't need the Atavan but when I'm like that I do. Keep your head up, your not alone and your not going crazy!!!!!"