new here! possible epileptic/non-epileptic seizures

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Sonny

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Hello to everyone :) I thank you all for creating such a gathering of information and experiences! And I appreciate any advice or experience anyone can give me while I am here.

I have no family, or even a friend, history of Epilepsy. I did have a dog once with Epilepsy (btw A LOT of websites dedicated to Animal Epilepsy, more than human I bet); but I was 8 and knew nothing about it.

That's until I started having these weird experiences like nothing was real that lasted for a 15 seconds to 2 minutes, jamais vu several times a month, sudden spells of confusion where I would cook spaghetti in the dishawasher, and blackouts/staring spells. I also have random body/one-sided jerks (not in clusters, not in the morning), eye flutters, and head drops.

I have had 2 sleep deprived EEGs, 2 MRIs, and 1 VEEG. All results normal.

My Neurologist isn't convinced I have Epilepsy. She want's me to see a psychiatrist for "panic attacks" because I have anxiety, even though I don't have panic or anxiety attacks, just social anxiety. I am not convinced it is Epilepsy either because of all the normal test results and everyone telling me I am crazy. However I am positive they are not panic attacks either.
She does however want to keep me on Topiramate 200mg because it helps my symptoms and says "what (I) describe sounds like simple and complex partial seizures" but says that "it's odd that I have never generalized into a Tonic Clonic all this time". Which I suppose is true? But never thought about before.

It takes 30 minutes to get to my Neurologists office, I have to wait an hour after my check in time for my doctor, my appointment is only 10-15 minutes long, my neurologist has no bed side manner, and I have social anxiety with a speaking impediment - all to which creates a recipe of getting no medical answers :( And did I mention I am my own advocate (it's just me and my husband and he doesn't attend doctors appt. with me)? Yeah. Frustrating... to say the LEAST.

Oh yeah, and I'm Sonny :)
 
Sonny said:
Hello to everyone :)
That's until I started having these weird experiences like nothing was real that lasted for a 15 seconds to 2 minutes, sudden spells of confusion and blackouts/staring spells. I also have random body/one-sided jerks (not in clusters, not in the morning), eye flutters, and head drops.
I have had 2 sleep deprived EEGs, 2 MRIs, and 1 VEEG. All results normal.
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Hi Sonny, welcome to CWE!! Bernard made this forum out of love for his wife Stacy. That love permeates throughout the whole forum.

I was diagnosed with epilepsy when I was 6 years old. At that time, I just had the blackouts/staring spells and eye flutters.

For EEG's to show up epilepsy, you have to have a seizure during the test. I have had a lot of normal EEG's along with normal MRI's. The VEEG will usually show up epilepsy.
 
Sonny you are very welcome to C.W.E. everybody here tries to help in our own little way. As Ruth has said Bernard created this site out of Love.

Its funny to be honest because some of us have tried cooking in a dishwasher, I have even tried the washing machine which I now call the cement mixer because I tried to mix cement in it one time. I get the body jerks as well and some others.

The thing with the EEG and it coming back normal is ok as it does this in nearly all cases and if the site of origin of the seizure is too deep in the brain it will not pick it up. So to show a normal result for an EEG is pretty standard.
 
Welcome Sonny. This is a great website.

It is not odd that you have never had a generalized or Tonic Clonic. It's odd she would tell you that.
 
I had my first seizure when I was 27 completely out of the blue. I don't have any family history of epilepsy either.

There are many people who have epilepsy and have had testing done and had no seizures during them. So this is a normal thing. I wonder why your neuro told you that you have to have a Tonic Clonic during the test. Tonic clonics aren't the only type of seizure out there.

What you are having does sound like a simple partial. I've had many with some of the things that you have described during mine.

If I have a complex partial or tonic clonic I usually don't know that it happened 99% of the time because I black out during them. The only way that I know I've had one is if there was someone there to see me have it.

I have also done some interesting things during a seizure. The dishwasher was loaded in a very interesting way once. I thanked my husband for loading it, because I thought he did, and told him to just let me do it. He told me that he doesn't touch the dishwasher because he knows I'm picky about doing it. I sent a few text messages to someone, his number is in my phone but I don't know why I have it and he didn't know who the person was that sent them. They weren't words that I sent just a bunch of letters. I came out of one once half naked on the couch, glad there was no company over!

It doesn't sound like you are getting very good help from your neuro. Is there another one in your area that you can go to? Can your husband come to your neuro appts with you? A lot of times another person is able to answer questions that you can't because they are seeing things go on during a seizure that you don't know are.
 
Thank you Ruth, FedUp, MAB, and valeriedl for the kind welcome :) I appreciate the replies. I have already jumped in with my first question right after I posted this one, and members here have treated me like I have been amazing.

It is refreshing to know I am not alone, and that I have a place to come for support and understanding! I have never received that anywhere else, even with friends and family.

valeriedl said:
There are many people who have epilepsy and have had testing done and had no seizures during them. So this is a normal thing. I wonder why your neuro told you that you have to have a Tonic Clonic during the test. Tonic clonics aren't the only type of seizure out there.
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She didn't think it was odd that I didn't have a Tonic Clonic during the test, but that I haven't had one in my lifetime. She doesn't think a person can "only have Partial seizures, but never experience a Generalized Seizure".

valeriedl said:
It doesn't sound like you are getting very good help from your neuro. Is there another one in your area that you can go to? Can your husband come to your neuro appts with you? A lot of times another person is able to answer questions that you can't because they are seeing things go on during a seizure that you don't know are.
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There isn't really a different Neurologist I can go to, unfortunately. And my Neurologist is really supposed to be good - she has good reviews, and isn't a Epileptologist but specializes in Epilepsy.

I think our issue is communication; she is really intimidating and I have trouble expressing myself verbally. And I'm going to make sure my husband can be at my next appointment so what I can't remember or don't know he can fill in. I also turn on my Webcam every time I am on my laptop while doing computer work - and I have caught some of my episodes. I am hoping these will help her understand my events.
 
Welcome. I am so glad you got so much good input. I just want to add that I have never had a Tonic Clonic and in fact I can hardly identify when I have partial seizures but only today when I was looking at my medical record and I notice it said, "Epilepsy, CONFIRMED." Sometimes I have EEGs that show epileptic configurations and sometimes they don't.One doctor told me that EEGs don't show anything 50% of the time% However it goes, my very best wishes! I hope you keep posting!
 
Sonny,
welcome to CWE

You don't have to have a family history of epilepsy to have epilepsy.Anyone can start having seizures , and they don't always find reasons for someone's seizures either.
Sleep deprived EEG's aren't those fun , I've had plenty of those.
I've had epilepsy all my life., along with my husband. He just got control of seizures with his brain surgery I wasn't so lucky.

I have partial seizures,tonic clonic.
I also take Tegretol,Topamax,Phenobarbitol.:agree:
 
Sonny said:
I think our issue is communication; she is really intimidating and I have trouble expressing myself verbally.
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If you have questions or things that you want to tell her try writing them down before you go to your visit.

Do you keep a seizure diary? This helps a lot when you are telling the dr about your seizures and answers questions that she might have. In mine I write down when I had the seizure, how long it lasted and what I did during the seizure. During a seizure I might stare, walk around the room, do things, try to talk, just feel weird (try to describe it as best as you can) or anything else that goes on during the seizure.

If there is anything else that is going on that you think is unusual that you are doing or is happening write them down too. It could be epilepsy related or it might not. This could help her too with things that she might not think to ask about.
 
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