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Please Help Me: New To Epilepsy

Sat, 02/16/2008 - 00:28
Well, My doctor believes that I have epilepsy. I am just starting Topamax. I have these "episodes" in the mornings. I usually get my seizures later that night or the next day..or not even at all.  But the last episode I had was so earth shatteringly scary I had to write about it. I'm 20 and I've just started dealing with all this happening. All of this has landed in my lap at once and I am really freaked out. When I had my episode, which I am wondering if it might be an aura, it starts off like static in my head. It sounds like a shovel scraping lightly on a snowy wet pavement. Then I usually lock myself in the bathroom to catch my breath and tell myself that none of this is real. That I need to get a hold of myself. That is when the worst part comes. I see everything including my body in super fast speed. Like everything is a movie being fast forwarded. And I am trying to keep up with it. Usually there is a small part of my brain that I can control and hear and calm until the episode eventually stops, but this time was the first time it disappeared completely until it eventually went faster and faster until I felt like my brain was going to explode and boil. It was so frightening. I had never experienced anything that scary before. Usually I am scared but not like that. Please help me and tell me what you think. All of this is new to me. I've dealt with passing out and shaking all my life, but now it is getting worse and worse and I am very frightened. Plus with being a senior at university it is very difficult being tired and confused all of the time. Thank you for helping and listening.

Comments

Re: Please Help Me: New To Epilepsy

Submitted by amichelleh on Sun, 2008-06-22 - 20:33
I had my first seizure when I was 19.  I was on Dilantin for awhile, and then tried the alternative route, herbs and vitamins, which didn't work.  I agree with getting enough sleep.  When I first started have seizures, (grand mal) I always had them in the morning before I ate and usually only one or two a year.  As the years went by they actually started to increase, I found a good neuro doctor who tried a few meds, topomax was the absolute worst, or was it the tegretol, anyway Keppra seems to have done the trick.  I am 52 and I don't feel like a vegetable.  I have started running, I eat healthy and try to get good rest.  I have only had two seizures in four and a half years.  I think I only had those two because my medicine got too warm.  I keep it in the fridge for the most part. (live in Arizona!).  I wish you well, I have a husband who has stuck with me through it all and it can't be easy for him.  We are fortunate that I found something that worked without the crazy side effects.  Ask your doctor about Keppra.  We all wish you well, there are different ways of getting through this, one of them is talking to others who also have it. 

Re: Please Help Me: New To Epilepsy

Submitted by OPENHOUSENY on Sun, 2009-01-11 - 01:45

 

 I had a similar experience where I felt like my body wipped around my living room @ like a 100 miles an hour and could not stop. Once I felt I was levatating up to the ceiling off my bed. I would ask your Dr. to put you on a trial of Keppra & Lamitical I am sz free on these meds since 2006...................Topamax gave me flu like symptoms and a metallic taste in my mouth.

 

Amy

 

 I had a similar experience where I felt like my body wipped around my living room @ like a 100 miles an hour and could not stop. Once I felt I was levatating up to the ceiling off my bed. I would ask your Dr. to put you on a trial of Keppra & Lamitical I am sz free on these meds since 2006...................Topamax gave me flu like symptoms and a metallic taste in my mouth.

 

Amy

Re: Please Help Me: New To Epilepsy

Submitted by Orien2 on Tue, 2008-04-08 - 00:05

Bathrooms have a lot of stuff that is very hard and you might hit your head.  It's better to sit down or lie down before you fall down.

A tip on you meds I usually leave them on the side of the sink so I remember to take my pills and remember if I have all my meds.  Since you might not remember being a busy student.  I think you should tell your friends what to do if you have one so they do not hurt you or themselves trying to help you.  

Tell them first remain calm, remove you from dangerous objects, roll them on their side if possible so they do not choke on drool, do not put anything in the person's mouth there is no way a person having a seizure can swallow their tongue, time the seizure if it takes longer than 5 minutes or the person is not breathing and has no pulse afterwards call 911.  If they know what to do with you then they will be less afraid.   This site has an excellent rescource on seizure first aid so tell your friends and you family to look at it.  Once they know then they will be more comfortable with it and if you do have one then it will increase your chances of surviving it.  They need to know because if they don't know then if you have a big one  then they won't know what to do. 

 

Question has anything very traumatic happened to you?  Eg death in the family, getting mugged, shot at, stabbed or bonked in the noggen by a heavy item?  

Also  what do you do if someone has a seizure in a swimming pool?

Throw in the laundry

Sick joke but thought you'd think it was funny.         

Bathrooms have a lot of stuff that is very hard and you might hit your head.  It's better to sit down or lie down before you fall down.

A tip on you meds I usually leave them on the side of the sink so I remember to take my pills and remember if I have all my meds.  Since you might not remember being a busy student.  I think you should tell your friends what to do if you have one so they do not hurt you or themselves trying to help you.  

Tell them first remain calm, remove you from dangerous objects, roll them on their side if possible so they do not choke on drool, do not put anything in the person's mouth there is no way a person having a seizure can swallow their tongue, time the seizure if it takes longer than 5 minutes or the person is not breathing and has no pulse afterwards call 911.  If they know what to do with you then they will be less afraid.   This site has an excellent rescource on seizure first aid so tell your friends and you family to look at it.  Once they know then they will be more comfortable with it and if you do have one then it will increase your chances of surviving it.  They need to know because if they don't know then if you have a big one  then they won't know what to do. 

 

Question has anything very traumatic happened to you?  Eg death in the family, getting mugged, shot at, stabbed or bonked in the noggen by a heavy item?  

Also  what do you do if someone has a seizure in a swimming pool?

Throw in the laundry

Sick joke but thought you'd think it was funny.         

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