Well- that was less than informative (Seizure talk with docs)

One reason I asked about seizures on here was- my experience with them is pitifully lacking. Finding out what kind I have had is even more difficult- I seem to be unique in being able to describe what I had happen. I am, however, going to look into focused seizures.

At any rate, the doctor and nurse both looked at me like I sprouted an extra head, took off my clothes, and proceeded to do the Macarena. I gave the doc the best example of the latest one I had (The goofy Kung Pow sequence), and he was taken aback by the whole description. He admitted this was well past his pay grade, it's a good thing I'm seeing the neurologist next month, and prescribed Keppra (which... I am not sure if it's doing what it says on the tin at this point), because that's all he knew what to do. Not a single, solitary person even so much as had a general idea what I was going on about. I'm not matching up to the typical seizure type.

Is this sort of reaction *normal*. Come April 30th, me and the neurologist are going to go round for a while. I am fully expecting to end up in a paper or 5 by the time I get done- because the s*** I have experienced is going to make his brain itch. Especially with an MRI that's just as normal as you please. That part, I do not get one damn bit. I have had decades of stress, PTSD, and all sorts of high scale misery that should have done *something* measurable- having seizures on top of it should have that MRI looking like a neurosurgeon's wet dream come true... and NOTHING.

I swear there is something funny going on, but what, I have no idea. I just am really feeling something is off.

a reply to: wylekat

I think it's very good that you are going to see the neurologist and hopefully they can get to the bottom of things for you. I would have thought the Dr could/would/should have tried to speed up your appt though as it is a little far out, IMO, and you seem to be in a 'dangerous' spot so be very careful.
Good luck to you!

originally posted by: TNMockingbird
a reply to: wylekat

I think it's very good that you are going to see the neurologist and hopefully they can get to the bottom of things for you. I would have thought the Dr could/would/should have tried to speed up your appt though as it is a little far out, IMO, and you seem to be in a 'dangerous' spot so be very careful.
Good luck to you!

I wish they had as well. It'll give me time to write out all of the fun crap he's going to get to find out about, recent stuff, and a few ongoing things that he'll never explain in a million years, but it'll be fun to hand it to him and watch him figure it out.

a reply to: wylekat
When a seizure happens is someone fully aware of what’s going on?

|edit| I work in this field slightly but have no PhD and very little knowledge of this.

Myself and three other family members have determined the following: if you don't know what's already wrong with you when you walk in the door, neither will the physician. This is true for about 98 percent of them. The exceptions are valued dianosticians indeed.

Between the four of us: about 250 person-years, histories of solid organ transplant, spine issues, intractable migraine, etc. In other words, experienced with los medicos.

A physical therapist recently suggested, "An American Sickness" by Rosenthal. If you're going to have to have much to do with the medical community, it might be worthwhile.

Wishing you the best on getting help! Research everything they tell you. Get second opinions. Trust nobody....or certainly no one who tells you something is "risk free" and "has no side effects".

a reply to: wylekat


Ummm...if there's no epilepsy and no abnormal brain electrical discharges...then chances are it's Psychogenic non epileptic seizures...

It's probably all in your head...by that I mean the brain coupled with the mind are extremely complex and powerful...
In a sense...we create our own realities...









YouSir

The first thing they will look for is a structural reason. If there is no structural reason, then it gets more dicey because they have to start looking at electro-chemical factors. Those are always harder to pin down, and if there is no obvious one there, then there is usually some kind of catch-all diagnosis leftover at the end.

That was the diagnosis for ADD/ADHD. It was supposed to be the one that kids got only after everything else was ruled out because the symptoms of ADD/ADHD can be mimicked by a lot of other problems/quirks little kids will have and they don't know what and how to talk about what's going on with them.

Somehow, ADD/ADHD became the label of first resort, so a lot of kids get misdiagnosed.

originally posted by: YouSir
a reply to: wylekat


Ummm...if there's no epilepsy and no abnormal brain electrical discharges...then chances are it's Psychogenic non epileptic seizures...

It's probably all in your head...by that I mean the brain coupled with the mind are extremely complex and powerful...
In a sense...we create our own realities...
I read the link. Am I right in thinking I could get one of the seizures come up if I am stressed correctly? Because I know what triggers would give them one hell of a reading- it'll just wreck me in the process.

YouSir

originally posted by: Allaroundyou
a reply to: wylekat
When a seizure happens is someone fully aware of what’s going on?

|edit| I work in this field slightly but have no PhD and very little knowledge of this.

It seems my remembering/ documenting these is causing at least the doctor to look at me sideways. As for me- I got nothing to work from initially.

a reply to: wylekat
Thank you for answering. And I hope that all will be well with you.

It was extremely frustrating trying to get answers in my case.

The doctors also put me on keppra, but I really didn't like the long-term effects of it.

Anyway, in my case, they were convinced that the seizures were a completely separate issue from all the other health issues going on. I was told that lack of sleep could lead to seizures, and pain could lead to lack of sleep, but that there is "absolutely no chance at all" the pain was connected to the seizures. Still don't know how to respond to that statement .. They further claimed it "is an absolute mystery" why any seizures occurred at all.

Of course, it was during this same time that one of my doctors attempted to convince me that people my age couldn't break bones (?), couldn't have any issues with bones (?), and that "there are two schools of thought on whether or not a bone is actually broken" (?). So, I suppose it was par for the course. Like in many situations, the folks involved make assumptions and conclusions and those will not be changed regardless of evidence otherwise. So, they'll say stupid things.

Second opinions are imperative in these matters, and if you don't get satisfactory answers, keep looking. Sometimes those answers simply wont be forthcoming, but occasionally the new set of eyes can find something important. In some cases, like my own, those new eyes could save your life.

originally posted by: wylekat
One reason I asked about seizures on here was- my experience with them is pitifully lacking. Finding out what kind I have had is even more difficult- I seem to be unique in being able to describe what I had happen. I am, however, going to look into focused seizures.

At any rate, the doctor and nurse both looked at me like I sprouted an extra head, took off my clothes, and proceeded to do the Macarena. I gave the doc the best example of the latest one I had (The goofy Kung Pow sequence), and he was taken aback by the whole description. He admitted this was well past his pay grade, it's a good thing I'm seeing the neurologist next month, and prescribed Keppra (which... I am not sure if it's doing what it says on the tin at this point), because that's all he knew what to do. Not a single, solitary person even so much as had a general idea what I was going on about. I'm not matching up to the typical seizure type.

Is this sort of reaction *normal*. Come April 30th, me and the neurologist are going to go round for a while. I am fully expecting to end up in a paper or 5 by the time I get done- because the s*** I have experienced is going to make his brain itch. Especially with an MRI that's just as normal as you please. That part, I do not get one damn bit. I have had decades of stress, PTSD, and all sorts of high scale misery that should have done *something* measurable- having seizures on top of it should have that MRI looking like a neurosurgeon's wet dream come true... and NOTHING.

I swear there is something funny going on, but what, I have no idea. I just am really feeling something is off.

I am qualified in Medical Triage assessment... But not a doctor. If I had to guess without seeing you and only addressing what you explained? I'd surmise it could be environmental exposure to something on you, around you or in the home, yard/outside or work environments.

Neurological (within you as a source) should be your 1St assessment. Barring internal pathological indicators.. Consult qualified neurological experts. If that doesn't present an immediate cause.. then perhaps something within or outside your daily environments you are expose to.

Good luck, and let us know. I'm curious.....

EMT/ADLS

originally posted by: wylekat...I have had decades of stress, PTSD, and all sorts of high scale misery that should have done *something* measurable- having seizures on top of it should have that MRI looking like a neurosurgeon's wet dream come true... and NOTHING. ...I just am really feeling something is off.

well comments like those make me wonder if perhaps what your experiencing is psychosomatic. you spend years inwardly convincing yourself you will eventually suffer brain health problems the body will eventually manifest what you expect, to satisfy you.

originally posted by: wylekat
One reason I asked about seizures on here was- my experience with them is pitifully lacking. Finding out what kind I have had is even more difficult- I seem to be unique in being able to describe what I had happen. I am, however, going to look into focused seizures.

At any rate, the doctor and nurse both looked at me like I sprouted an extra head, took off my clothes, and proceeded to do the Macarena. I gave the doc the best example of the latest one I had (The goofy Kung Pow sequence), and he was taken aback by the whole description. He admitted this was well past his pay grade, it's a good thing I'm seeing the neurologist next month, and prescribed Keppra (which... I am not sure if it's doing what it says on the tin at this point), because that's all he knew what to do. Not a single, solitary person even so much as had a general idea what I was going on about. I'm not matching up to the typical seizure type.

Is this sort of reaction *normal*. Come April 30th, me and the neurologist are going to go round for a while. I am fully expecting to end up in a paper or 5 by the time I get done- because the s*** I have experienced is going to make his brain itch. Especially with an MRI that's just as normal as you please. That part, I do not get one damn bit. I have had decades of stress, PTSD, and all sorts of high scale misery that should have done *something* measurable- having seizures on top of it should have that MRI looking like a neurosurgeon's wet dream come true... and NOTHING.

I swear there is something funny going on, but what, I have no idea. I just am really feeling something is off.

Have you heard of the VNS implant? My daughter just had it put in and it stops her seizures almost immediately.

a reply to: mysterioustranger

My environment has changed significantly between the first and second round- better apartment, etc, WAY better water quality, even the electrical wiring in the house is light years better. My blood sugar is just plain haywire at times, diet doesn't seem to do anything to it, exercise doesn't affect it (AND IT SHOULD). My guess on that is something is throwing it off- but getting a doctor to listen is impossible. The episode where I had the weird epileptic thing was well removed from home. Only factor was I was unusually stressed- yelled at wife and kid (mostly because kid was doing an amazing imitation of a complete 3 ring circus).

I have some other things the poor neurologist will have to struggle with when I see him. He's going to either think I'm absolute bugnuts- until he talks to my wife ... who ALSO experienced this thing, not to mention 2 other people.

I'm also a tad thrown that with the life I have led with almost non stop stress, and some really fun trauma tossed in- *nothing* shows up on an MRI. Neither did the concussions I've had. I know I've got a hard head- but seriously???

a reply to: NobodiesNormal

I've also had a couple concussions, which SHOULD have shown up in some form or fashion. I've had PTSD as well, which changes the brain's structure.

I don't want some inoperable horror cancer, but I know that there should at least be some metaphorical dents. "Perfectly normal" doesn't compute.

Keppra worked like crap for me. It was almost as bad a Depakote as far as the bad reactions it gave me. Each type had different bad side effects. Topamax didn't help too much but at least it did not tear my body apart and I could still think a little with it.

I had major problems with all of the ones they tried on me. Got my genetics done and found out why I got most of those effects. I tried a lot of things to control the epilepsy over the year, I am using mostly diet, but I have a few supplements that work but they do not take care of muscle problems from getting locked on occasionally. Taurine and NAC seem to work all right, but still get muscle spasms a little. Magnesium seemed to work but not on the muscles getting cramped. Diet works the best though. Meds are out of the question, I had such bad reactions that I doubt if my neurologist will even consider any anymore. She saw me go downhill very fast with the meds.

I need to go see here again to keep her updated on how I am doing, maybe she will have some more info on it for me. The endocanabidoil gelcaps made from hemp did a good job of controling my seizures, but I did not try more than one, I wanted something that would quickly help out if I go off my diet too bad, they are a good safety net.

Whether you are aware what is happening depends on what is happening.

For a grand mal which these are not....you may or may not know it is going to happen....but while it IS happening, you will now know what is going on.

Other kinds, you may know...or not.
It could feel like a dream, you are a bit out of it.
Some memory loss seems to go along with it.

I cannot say what will or will not show up on an MRI.
But, for an EEG....nothing may show UNLESS you are having an episode.

originally posted by: wylekat
a reply to: mysterioustranger

My environment has changed significantly between the first and second round- better apartment, etc, WAY better water quality, even the electrical wiring in the house is light years better. My blood sugar is just plain haywire at times, diet doesn't seem to do anything to it, exercise doesn't affect it (AND IT SHOULD). My guess on that is something is throwing it off- but getting a doctor to listen is impossible. The episode where I had the weird epileptic thing was well removed from home. Only factor was I was unusually stressed- yelled at wife and kid (mostly because kid was doing an amazing imitation of a complete 3 ring circus).

I have some other things the poor neurologist will have to struggle with when I see him. He's going to either think I'm absolute bugnuts- until he talks to my wife ... who ALSO experienced this thing, not to mention 2 other people.

I'm also a tad thrown that with the life I have led with almost non stop stress, and some really fun trauma tossed in- *nothing* shows up on an MRI. Neither did the concussions I've had. I know I've got a hard head- but seriously???

y

I hope you get answers soon....