My Experience... Seizures?

[Overkill]

Hi, I'm not used to this forum style/setup. Mods, please let me know or move this if it is not right.

So I introduced myself a few minutes ago. I just turned 40. Ugh, that makes me feel so f***n old. I've had a rather unusual life which I won't go into detail about now.
When I was 20 I think I had my 1st seizure but didn't give much thought to it due to other things that made me not care.
I went through unbearable stress for years in my early 30's. My life was slowly being torn apart. The stress which was a result of horrible losses over and extended period of time started a circular type stress thinking that I could not stop or shut off. I almost took my life over it because of how unrelenting it was. It lasted every second of every day, all day.
Then one night I sprung/fell/jumped out of bed from sleep. Every single muscle in my body was spazzing. I was on the floor and it was hard to get up but I did. I noticed I was freezing like I never had before. I grabbed a comforter and with the help of walls made my way to the wood burning stove which was roaring hot with logs. I opened the door and sat right next to it but couldn't get warm at all. I was still seizing but never lost consciousness. This lasted about 20 minutes and then I made it to the bathroom and vomited twice and everything started to subside. I was worn out half the day after.
This started happening during the day as well and more often, like a once or twice a week... no pattern.
I was put on benzos because my doctor thought it was a panic attack. I later saw a neurologist who had an MRI and EEG ordered. They called me with the MRI results as normal and I asked them to call me with the EEG results when they came in. They never called to give me the results or to set up a follow up visit. This doctor also told me anyone who has seizures is unconscious during them. Is that true? I felt scammed and ripped off by this doctor.
It's like having your car towed to a mechanic because it won't start. The mechanic does a couple of tests and assures you that you're correct, the car won't start and to come have it towed home. No fix, no help, no repair.
At this point I'm on heavy benzos which I hate the drowsiness of and addiction potential but they help a lot.
I guess I'm looking for some kind of help or answers. I don't know if I'm having seizures or extreme panic attacks and the medical system where I live is horrible unless you're loaded or have very good private insurance which I am not and do not.
Thanks. Any help would be appreciated.

-Overkill onder:

 

[seagull]

You wait until turn60 makes feel frigging worse.e do some odd things no you don't have be unconscious but often are yes awful pNic like attacks can be part of the aura in my case I panic because I know it going to happen sort of catch 22.In my personal opinion I would say what you had was not sz but I not a doc and don't know all your details.There are forms of e that make bits of body spaz out as you put it but you often awAre of it.eeg is not always the best indicator you can have e but it not show on eeg that can happen and if you on benzo not sure you get true reading.You need further investigations before you can say it e I don't think anyone on forum can give you an answer until had more investigations wish I could.If I were you I insists on nurologist see you as could be many different things that may have nothing to do with brain.

 

[Fedup]

Overkill

You just turned 40, still a youngster in my books. What is it that makes you think you had seizures, stress is a real factor in epilepsy and some other conditions so all that you went through and all the stress did not help. For a doctor to tell you "anyone who has seizures is unconscious during them" is very wrong, the first thing I would do is look for a new doctor. There are so many different types of seizures and they effect everybody in different ways, even if they are the same type of seizure. But there are lots of seizures where people do not lose consciousness.

It is good news that the MRI came back normal but you do need the results of the EEG as well, the results of the EEG will not say you have epilepsy but it will help to diagnose the issue in hand.

 

[seagull]

Thinking alternative consciousness you appear with it but are not.Make sure you got medical back up when you come off benzo I been down that street and got be done properly.
I have e and learn something everyday when I come to forums I concur with Feds what makes you think it e.
I had over active thyroid years ago that also give you similar symptoms but stress that can be the seed of many horrors
I think everyone going say same thing get to decent doc are you Brit or American

 

[JJR1956]

But there are lots of seizures where people do not lose consciousness.

When I was on Dilantin, (now on Pheno), I would get these weird blanks in time. It's hard to explain, but lets say I was driving on the highway going home.....I'd still be in control of my car, but I would pass my exit and kind of forget a slight moment in time, and forget the exit to get off. Like I said...It's hard to explain.

Hope you feel better Overkill.

 

[Overkill]

Thanks seagull, Fedup and JJR1956. Sorry if I offended anyone by saying I feel old at 40 lol. I actually said and thought the same thing when I turned 30. Now I realize how young that was. It's better just to live in the day or moment even I guess but it's hard when time goes by so fast.

Also, I was on benzos during the EEG so maybe it's inaccurate.

As far as the doctor saying you must be unconscious in order for it to be a seizure, I was pretty sure he was wrong and I asked him that intentionally to hear his answer. I had done some research online before my visit with him and found that not all people are unconscious and there are different kinds and causes but I wanted to check with you guys, the real experts who live with it, to make sure. That just proved to me even more that this doctor doesn't know much. I don't have much faith in most doctors. I will look for a new doctor.

Fedup, the main thing that makes me think they are seizures is how every part of my body spazzes. It's like electricity running through me and my whole body is twitching very badly. I can stand while leaning against a wall but have a hard time walking because my legs, calves, feet, etc. are also violently shaking. Also my arms, hands and stuff... my whole body.

seagull, I am on high amounts of different kinds of benzos and I know how horrible and dangerous they can be to come off of if not done properly. I am going into a facility to help get off them probably this month. I have two friends helping me set it up now. I'm American btw but my family on both sides are from the UK. I've always wanted to visit, England especially.

JJR1956, I know that feeling but from different drugs. It's like amnesia. Like you lost time. Thanks for the feel better.

Time to give this doctor hell and find another one.

 

[Cint]

When I was on Dilantin, (now on Pheno), I would get these weird blanks in time. It's hard to explain, but lets say I was driving on the highway going home.....I'd still be in control of my car, but I would pass my exit and kind of forget a slight moment in time, and forget the exit to get off. Like I said...It's hard to explain.

Let me also say, I sure hope you are NOT driving if you forget that one moment in time. It only takes that ONE moment to drive off the road and hit a tree, brick wall or worse, just because you forgot. That's the excuse drunks use all the time.

 

[Cint]

As far as the doctor saying you must be unconscious in order for it to be a seizure, I was pretty sure he was wrong and I asked him that intentionally to hear his answer. I had done some research online before my visit with him and found that not all people are unconscious and there are different kinds and causes but I wanted to check with you guys, the real experts who live with it, to make sure. That just proved to me even more that this doctor doesn't know much. I don't have much faith in most doctors. I will look for a new doctor.

Fedup, the main thing that makes me think they are seizures is how every part of my body spazzes. It's like electricity running through me and my whole body is twitching very badly. I can stand while leaning against a wall but have a hard time walking because my legs, calves, feet, etc. are also violently shaking. Also my arms, hands and stuff... my whole body.

That is what a seizure is....a disruption of the electric communication between the neurons in the brain, like a "short" in the system. My seizures started out as CPs and slowly progressed to TC seizures. So to have a dr. say one has to be totally unconscious is a total fool! There are numerous types of seizures:

http://www.epilepsy.com/learn/types-seizures

seagull, I am on high amounts of different kinds of benzos and I know how horrible and dangerous they can be to come off of if not done properly. I am going into a facility to help get off them probably this month. I have two friends helping me set it up now.

Some Benzos (Diazepam, Clorazapam, Lorazepam) are used in emergency seizures (Status), so if you're using them now in high amounts, you're making the situation dangerous. Make sure you get into a facility that knows about seizure disorders, too.

JJR1956, I know that feeling but from different drugs. It's like amnesia. Like you lost time. Thanks for the feel better.

Time to give this doctor hell and find another one.

With my CP seizures, I do lose time. I don't remember a thing that happened during those 3-5 moments. Folks have told me some of the crazy things I've said and done and have NO recollection of doing it.
Having different types of epilepsy does/can play mind games.

 

[JJR1956]

Let me also say, I sure hope you are NOT driving if you forget that one moment in time. It only takes that ONE moment to drive off the road and hit a tree, brick wall or worse, just because you forgot. That's the excuse drunks use all the time.

That happened to me a few times when I was on Dilantin. I told my Nero about it and I was changed over to Pheno. Those lost moments stopped, along with other issues I was having on Dilantin.

 

[Cint]

Let me also say, I sure hope you are NOT driving if you forget that one moment in time. It only takes that ONE moment to drive off the road and hit a tree, brick wall or worse, just because you forgot. That's the excuse drunks use all the time

That happened to me a few times when I was on Dilantin. I told my Nero about it and I was changed over to Pheno. Those lost moments stopped, along with other issues I was having on Dilantin.

onder: I think you completely missed my point. If that was happening when you were taking Dilantin, why were you still allowed to drive? I lost my driving privileges because of a CP seizure while driving and I did hit a tree and a wall. Fortunately, I did NOT hit nor KILL another HUMAN BEING. I will NEVER drive again.

 

[JJR1956]

Cint,

Like I said..."It's hard to explain how I felt". Let me try this again.....

I never blacked out. It was like I just forgot where I was going to. Still able to stop on a dime if the traffic did, and still in control of my vehical. Just a moment in time where I forgot where I was going to. Do you think I would have kept driving if I blacked out?

 

[Overkill]

Hey guys, just checked the related email account for the 1st time in a while. I didn't realize there were more replies. I appreciate all the answers and the support you guys have on this forum is really good.

So I decided not to search for another doctor up here. The friends I mentioned earlier are in a state in the US where I used to live. I'm going to drive there and they're going to help get me into psych ward. We all agree it's the best way. I NEED to have these seizures figured out and if I have to be in a hospital for it to happen, then so be it. When it happens there will be medical staff around to observe it. I also have gotten myself pretty deep into benzos and I'm going to need some help tapering off of them. I don't exactly like the sound of being in a psych ward but at this point I'll do anything.

I don't know the exact date I'll be back but I'll be sure to come back here and share what I find out.
Thanks everyone.

 

[Autumn Breeze]

Good luck!!!