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Still waiting for a diagnosis

Wed, 08/09/2006 - 11:16
Hi,I'm Ree and I'm a newbie.5 yrs.ago after my late husband was killed I started having seizures.It lasted 2 months and I had about 8 of them.At the time the DR.s thought they were pseudo seizures brought on by the trauma of my husbands death.I was 35 at the time.Anyway after the 2 months I remained seizure free for 5 yr.s until last week.I was on my computer and laughing and joking with my husband(re-married)and out of no where I went into what the DR.s later told me was a Grand-Mal seizure.I even stopped breathing for about 30 seconds.Then I had a second one about 3 hours later on the way home from the hospital and from what I'm told it was much more violent then the first.I called my primary and he had me go straight to the ER at his hospital where they did a spinal tap and a ct scan.Their not to convinced there pseudo seizures since I hadn't had one for 5 years,I'm also very happily married,have grandchildren and children I love not to mention an Akita who's my best buddy.Not much stress other then some finances so nothing that would have brought on a pseudo.My next tests will be an MRI and an EEG.For right now they only have me on pretty heavy doses of Valium because they said they don't want to give me seizure meds because if you don't give the right ones for the right seizures it can be very dangerous.When I have them my eyes are open,pupils dialted,I've bitten my tongue and I go unconciouus and have no recollection of the seizure.I also get a severe headache right after that'll last about 2 days and cognitively I'm way off for about a week and my memory gets so bad I can't remember my own phone number.They believe it could be adult onset epilepsy or scar tissue from several head injuries I sustained many years ago.Has anyone here ever been told they had pseudo seizures to find out it was really epilepsy or something else/I've also read and been told that pseudo seizures have notable differences to epileptic seizures and that mine sounded like typical Grand-Mal.Any input or experiences would be greatly appreciated.Nothing like waiting for tests results to tell you wether or not you just need a shrink.It's all so frustrating.Thanks in advance for any input...Ree

Comments

Re: Still waiting for a diagnosis

Submitted by txrhb1 on Sun, 2006-08-20 - 23:42
Hi Ree, I can't imagine the frustration you are going through trying to figure this out. I think many people are diagnosed with pseudo seizures, when in fact it is epilepsy, and vice versa. It is not abnormal for someone with confirmed epilepsy to have both a normal EEG and a normal MRI. Sometimes, unless you have a seizure during the EEG, there will be no abnormal activity. Sometimes, you have to do 48 hour ambulatory EEG's, or even video EEG's in the hospital. Don't give up, and continue to look for the right answers and the right medications. You might also consider going to see an epileptologist, a neuro who specializes in epilepsy. Good luck, and keep us posted, Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

Re: Re: Still waiting for a diagnosis

Submitted by Ree2006 on Thu, 2006-08-24 - 21:55
Well,I got the results of MRI today.Aparently there is a blood vessel deep in the left side of my brain that is malformed causing my seizures.So it's not pseudoseizures and it's not Epilepsy.So tomorrow I go for my EEG and then they will decide if their going to surgically remove it or keep me on seizure meds.They also said there's a risk of the vessel bleeding.I guess I'll know more tomorroe.I'll keep you's posted.

Re: Re: Re: Still waiting for a diagnosis

Submitted by txrhb1 on Sat, 2006-08-26 - 16:22
I am so glad you at least finally have answers. I know it must be scary, waiting to find out how they are going to handle this new discovery. Hang tough, and know that we are all thinking of you, and sending blessings your way. Let us know how the EEG went. ((( hugs ))), Barbie *************************************** "We are each of us angels with only one wing, and we can fly only by embracing each other." -lucian de crescenzo

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