[Bruins88]

So, Ive had these once in a while, but never really understood how often they are, as they usually happen when im alone.

Anyways, today a friend came over all afternoon to visit, he said I would randomly just start screaming, not really loud, but screaming random things. Usually just a bunch of random words. But I would say them consistently, like 3-4 words in a row, then repeat those same 3-4 words in a row a few times. Sometimes they werent bad words, sometimes they were swear words. He said I did it around 4-5 times this afternoon. I honestly only remember one of them to be honest.

What exactly is this? Is it a form of seizure? He says none of them had any context to what we were talking about, or doing. My wife has stated that I do stuff like this sometimes, usually in my sleep Ill wake up and do it then fall back asleep.

Odd. Figured id ask though, see if its somewhat common, or an answer for it.

[Lara]

You should talk to your doctor about this, Kevbo, in case it is seizure related.

[Bruins88]

Sadly anything I mention about seizures he brushes off because I had a normal 20 minute eeg

[anon1028]

Originally Posted by kevbo887

Sadly anything I mention about seizures he brushes off because I had a normal 20 minute eeg

Then see another one. until you get answers. I've been searching for 7 years for sleep help and finally got some. I know its tiring seeing new ones but you're worth it and I'm no doctor but this sounds important to get to the bottom of.

[Lara]

But kevbo... are you asking your regular doctor about these episodes or are you waiting until you see a Neuro or someone? If it was seizure related it is imperative that you are treated whether the doctor ignores your questions or not. You can't keep having seizures (that's if you are having seizures). It's dangerous! One 20 minute EEG isn't really the answer.

Sometimes people can get Tic Disorders after a TBI, but because you mentioned that you don't recall these events all the time, it seems concerning to me. What does your wife think?

[Sitke]

Very often a 20 minute EEG won't show seizure activity, even in someone who definitely has them, and these Dr's know that.

Get a 2nd opinion, I saw a neurologist for an EMG and it showed pinched nerves, this was after seeing a horrible neurosurgeon who dismissed me.

I've also seen another neurologist recently and am having an EEG next week, he suspects some kind of seizure including non epileptic seizures.

There is definitely something going on so see someone else.

Just to hear the neuro who did the EMG tell me beforehand that the test is not fool proof, it might not show anything, could have hugged him for being honest.

The neuro who I see for my "funny spells" said these things should not be happening to me and they should not be happening to you either.

The screaming is a symptom of seizure, not saying this is what's going on but it can be, I shouted the same words over and over in the middle of the ER, like a robot, could not stop it.

[SarahSmile0205]

Kev

have you hired a lawyer yet for your WC? if not, and you can not get good care with the doc you have you may want to consult one.. especially with your seizure history

[Bruins88]

Sadly the second opinion is 3 months out. Earlier I could get one, unless theres a cancellation.

My pcp will not see me about because its related to my head injury which was at work. Sadly I already tried.

I go through cycles with these seizure like activities. My wifes concerned, because she said last time I was doing these screaming episodes I went into a drastic downfall as far as my symptoms were. She said around that time I progressively got worse, before getting better. This will be the 3rd cycle, and it seems to be holding true, because I havent had a "good" day in about 2 weeks now, and the headaches have been getting worse again, as well as an increase in these "seizures"

We have some video taped, and well documented, but the current neuro just keeps saying yah they sure sound like seizures, but thats it. Hes a worthless piece of junk if you ask me, cannot wait for the second opinion.

Also, besides the glaring fact that you could have one while driving or being in a compromising position, why are the seizures dangerous to keep having?
Sorry, I got about a half hour of sleep last night, and really cant think to straight today.

[Lara]

Also, besides the glaring fact that you could have one while driving or being in a compromising position, why are the seizures dangerous to keep having?

Having seizures puts a huge strain on the body, apart from the fact you could harm yourself or others. The danger really lies in not knowing what type of seizure you are having (if you are having seizures).

sitke mentioned Non Epileptic Seizures. If a person had non epileptic seizures and was being treated for epileptic seizures, the actual treatments could be dangerous as well.

Psychogenic Non Epileptic Seizures

edited to add: from reading more about PNES it appears that comorbidity with conditions such as depression and anxiety and even aggression is quite high. Treating the underlying conditions can help the outcome of the non epileptic seizures.

[Sitke]

As Lara says the danger is not knowing what kind of seizure you're having if that's what's going on, also you can suffer from more than one kind of seizure so it gets so complicated but a Dr who knows what they're talking about should be able to figure it all out eventually.

Quite often damage to the brain (which can be causing all this) is too deep for most tests to pick up on.

Plus people who definitely have seizures, but no test shows anything, are often put on seizure meds, it's trial and error.

Interesting that your headaches are getting worse, mine are too, I was diagnosed with migraines, this all happened after the concussion.

If they are PNES, as Lara mentions treating the underlying conditions such a depression, anxiety etc can help.

Sorry you're going through this, I know how frustrating it is.

Notice you're not getting sleep, lack of sleep as you probably already know can make this seizure like activity much worse, along with stress and anxiety.

I am sure you're doing the same thing but I am doing as much research about all this as possible so when you see someone else you can ask questions.

Hang in there.