All test fine...am I just plain nuts? P.S I'm a Newbie

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Dline

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H Everyone! I'm new to posting here but have been lurking for awhile :).

One year ago this month I was diagnosed with Complex Partial/Simple Seizures. It's been a long year...even though it's only been a year since my diagnosis, I remember having seizures since I was a little girl--I just didn't know what they were called.

My family used to joke that when I was young they'd send me to the store to get milk and I would come back with no milk and had lost the money. Pretty funny, because I still do things like that now.

My Dr. and I think my Epilepsy comes from undiagnosed Celiac disease (I've had it all my life but was only diagnosed 6 years ago at age 35) The disease has many neuro effects.

My question is: My video 48 hour EEG, regular EEG, MRI, and blood tests have all comeback normal. My seizure are classic Complex Partial (automatisms, auras and the whole nine yards) and Simple seizures through description, witnesses and my complete memory loss.

Has anyone had this? Do you feel crazy and that maybe without any real "proof" from tests that maybe you are just plain nuts?!?!? Epilepsy is so isolating, I could really use a hug and a shoulder from those who understand the journey.

Any reassurance or suggestions/stories would really help! Thanks.
 
I have those types. I had absences throughout childhood too! My parents just thought i was an airhead and I was in "lala land". Later they came from a ruptured cavernous hemangioma, which showed up on the mri but they weren't 100% sure it was the cause. The neurologist said lots of people have them and usually don't cause a problem. The first diagnosis was panic attacks because I'd run around screaming and sometimes shaking my head. And no memory I'd even had one at all.

Mine were a challenge to get the epilepsy diagnoses with actual proof. I was having several daily but whenever I'd go for a test all would go still. My eeg was only slightly abnormal the first time around. For my veeg it took over 48 hours for one to happen. That was after sleep deprivation and cutting of all meds. Then I had 3 in 2 hours. That pretty much sealed the deal. They're tricky little suckers!

They removed the hemangioma but I'm still having breakthrough simples because of scar tissue.

You're not alone! Welcome to the club! :)
 
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Hi Dline,
Epilepsy can be isolating so here is a BIG {{{HUG}}} for you. I do think you're experiencing CP seizures. Years ago, my dr. thought my CP's were due to hypoglycemia, until I had a bad TC that put me in the hospital. I knew something was wrong, but didn't think I was nuts. I thought the doc was nuts for making the wrong diagnosis! But unfortunately with E, that does happen frequently. And there have been others on CWE that also have Celiac disease. Check out these posts:

http://www.coping-with-epilepsy.com/forums/tags/celiac.html
 
Thanks Guys!

KatieCoy83--My family thought I was in la la land, too. I do believe the ones from my childhood were absence as well. Thank you for explaining your experience--yeah, they are pretty tricky little suckers!

Thanks to Rick956 for the support. And thank you Cint for supply those link re: Celiac and for reminding me that I may not be the one that's nuts! :)
 
It can be really isolating, many people are ignorant to any kind of epilepsy other than TC's and think absences have no effect on your life as they are only a few seconds or minutes long.

You came to the right place... People think you are being rude and ignoring them during a seizure and having to explain your medical history to strangers so that they don't get offended gets tiring after a while. We all understand

And if that makes you nuts.... Well welcome to the mad house xxx
 
There are no nuts here, just a bunch of people to commiserate, share, help and hug. Welcome
 
Hey y'all, I'm new here as well and have been dealing with a similar issue. I started having seizures about a year ago when i was out to lunch with my best friend and had a grand mal... a few months later i had a second in my office alone... a few months later i suffered 2 in a row... and this weekend i suffered 4 grand mal seizures... i also have experienced dozens of absum seizures in between. I've had the MRI, EEG, 48hour EEG and mine came back negative and my doctor suggests stress is the cause but most times they happen are when I'm in fairly good spirits. The worst part of all of this is that I'm left feeling like I'm crazy all the time. Tinking its all in my head and I'm causing things. Any help would be great.... And to the original poster, you aren't alone!
 
Lots of people on this site have normal tests but clear evidence of epilepsy, and aren't crazy. I've had seizures since I was 12, and my early EEG was completely normal, no evidence of abnormal waves. My neuros through the years always looked at the clinical symptoms and believed it was epilepsy anyway. It wasn't until last year during my second EEG that I had a very abnormal one (Dysrhythmia grade 3, so the most abnormal in the grading scale)--which shows that you can have normal testing and still have epilepsy, since I did in my early years.
 
Welcome Dline. Like lindsayschu2 said, many of us have normal tests, myself included. Most recently, my neurologist pointed out that during a simple partial in my sleep, the EEG read completely normal. If you're nuts, I'm a raving lunatic. :roflmao:
 
Dline, don't worry all the best people are nuts. You're just one of the best. My doctor tried the whole nine yards all came out normal. Our doctors will not look beyond science thereby limiting themselves and us when their methods don't work. I've learned, along with many others, that epilepsy is far more complex than the body alone. Our mind and spirit must be addressed as well. You have a computer google psychological effects of seizures, ketogenic diet, cbd/cannabinoid, etc. Use him as a tool. Take what he has to say and try the medication he has to give. I, and others, have found that we have to do the research as doctors will not go beyond science, tests, and data. Welcome to the lunny bin.
 
Hi Minkous,

My seizures started as a young adult. That is not uncommon, my 2nd cousin had epilepsy and for some that means it can be genetic. My seizures were very tough. The causes were multiple mental and financial stress, wrong food, lack of sleep, resentment,etc. Remember it is not simply the body that we must pay attention to. The mind/emotions play big role in who we are. Google psychological effects of seizures. Negatives are fear, introvertive, anger, resentment, loneliness, stress, distrust, etc. Positive, spiritual, courageous, intuitive, resilient, etc. However faith, spiritual, must be addressed along with it. Prayer, meditation and if you have to force yourself to smile-do it. It took me many years to come to seizure free. I have a plan that works and I must keep to it both day and night. Note that seizures tend to progress when not treated. Have you asked your doctor for some prescription medication? There are many out there. Lamictol, Dilantin, and more. Try natural means as well.
 
joyous, it's terrific that you've made positive lifestyle changes that have kept you seizure-free. For me, there hasn't been that need to go that route (in part because my seizures have responded well to medication). I've always been happy and even-keel, both before and after the onset of my seizures. I'm not spiritual or religious, though I can appreciate that faith might play a role for others. It definitely can pay off to identify and eliminate secondary seizure triggers -- physical, physiological, emotional, environmental, etc. Keeping a seizure/symptom diary can help in this regard. And I think that finding ways to connect with others can ease some of the challenges that epilepsy brings.
 
Again, thanks to everyone for their replies! All of you have managed to reassure me that I'm not alone. Means so much...
 
Nakamova, I thank you. I'm glad you've responded well to meds. I agree a diary on everything helps me. I am a chatter box. Take care.
 
Definitely not alone! I am I a similar situation, although my FIRST diagnosis is still being debated on epileptic or non epileptic seizures. Frustrated!! And yes I feel crazy sometimes :(


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It's was insane to hear them babble about my cat scans and maybe it was this or that. It was in 1996 that my doctor finally made a move in the right direction. I tried suicide. Seizures were so bad I had to take an extra pair of jeans with me were ever I went. My tongue is still scarred from all the biting. He got me on lamictol but could not find a co-med. I found the rest. Medical M., diet, prayer, and forgiveness. Some epileptics carry old garbage and it causes some seizures. Take Care
 
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