Help with understanding my own experience

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jmoore

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Hi,

Since I was a young boy, I have been having the following symptoms:

1)Visions (always the same scenes, never triggered by anything external that I am aware of). Once the visions are over, I can hardly remember them, but I know that I have the same ones each time.

2)Brief memory loss of my actions for the entire day (but if I think really hard the events will come back to me)

3)A feeling of euphoria during the entire episode. I remain completely aware of my surroundings and can talk, but I prefer that who ever I am with remain quiet so I can enjoy the experience.

4)A feeling of deja vu. I really cant describe this but during the episode it seems like thinks make more since because I have done them before. But since I really cant remember the exact deja vu experience afterwards, it is only a 'feeling' I have.

The episodes that I have are very rare and last less than a minute. I may have them only twice a year or less than that. But I know that if I have one episode, I will have another that very same day. Then a very long time will pass before I will have another. Also, I know when I am going to have one because I get this weird feeling like I am on the brink of having one and this will last all day until it finally occurs. And, like I say, once I have the first episode, I know a second will happen again that same day.

I am now 36 years old and these episodes have been a complete mystery to me my entire life. I have tried to explain the symptoms to people close to me but no one I know has ever experienced anything like it. If I feel I am going to have one, I let people around me know, so that when I say "Shh, I am having one" they know to just leave me be for a few minutes.

I happen to be reading a book of fiction where a character had some of the same symptoms, so I started browsing the internet.

Maybe what I have been experiencing my entire life have been simple seizures? It would be a relief to at least know that I am not alone in what has been happening to me. And I know this sounds crazy, but, because of the euphoria, I love when it happens. It is like a little bit of blissful pleasure for a few seconds.

Do my symptoms resemble anyone elses?

Thanks to anyone who responds and who might be able to shed some light on my lifelong mystery.

Joseph
 
Hi Joseph,

Seizures are new to me, but what you describe sounds to me like partial complex seizures, which I also have. I started out having only the partials, and I was like you, I could talk and tell others to give me a second, while it was almost like a movie was being played out before me. Very de ja vu feeling, and I described it to others as "other people's dreams" because I couldn't think of any other way to describe it, and I also felt pretty euphoric about them. (I've heard that the brain activity that causes the seizure can kind of act like some sort of natural electroshock therapy, a re-setting of the brain of sorts, which can contribute or could cause that euphoria).

I also felt that they repeated, though I could usually not quite remember exactly what they were afterwards. When they were happening more frequently, like 4 or 5 per week, I started to remember them a little, but it was still more like a vague feeling of them, rather than a specific memory. Now on meds, I only have them about once per month, and they are not nearly as intense or vivid. I even sometimes miss them, is that weird? But I hate the tonic clonics, which is why I am taking meds.

So, to me, it sounds like you are having partial complex seizures, but I am no neuro. Do you have memory problems? Do you have other hallucinations, like auditory or gustatory? Sometimes those things can accompany seizures.

I would say, if they present no problem and you do not have the grand mal, or 'tonic clonics' as well, I wouldn't worry about it! Especially if you have had them for most of your life without any issues. When I just had partials and no tonic clonics, which was for about the first month that I had them, I felt actually happy about it, like I was having a vision or something. I even went out and bought a lottery ticket for the first time when I remembered one of a blind woman and lottery balls! (didn't win, darnit; call me nuts).

Good luck!
 
Joseph,
Seizures definitely aren't anything new to me I've had them fourtyeight years . I've also had plenty of other health problems.

Memory loss was the worse when I was on Dilantin for 34 years. The deja vu went away when I started Clonazepam.

I've been told my auras I use to have sound like an acid trip.

I' have like 5 different types of seizures.
Deja vu is not uncommon I thought my neuro would thought I was crazy when I explained it to it when I was a teen.

Belinda
 
Hi Joseph,

I'm totally new here, but have had seizures for 45 years of my life. The association of deja vus to my seizures is new for me. My seizures have changed since I hit perimenopausal life. Now I have periods of time when thinking about anything in a timeline (what did happen, what may happen in the future) gets me into a seizure mentality - it's like I can think myself right into a seizure or change my thoughts and keep the seizure at bay. During those times if I keep my thoughts on what is real in the present I may keep a seizure away.

When I do have a seizure, there are certain pictures and thoughts that go through my mind. The will be the same ones each time and they feel like they are really happening.

Thanks for the comments about deja vu, it totally makes sense to me for what is happening with my seizures right now.
 
That’s exactly how my Son describes his seizures, to the tee. His epilepsy started at around 13 and he was diagnosed 10 years later when he had his first tonic/clonic. Fortunately there are no tonic/clonic in your case. He has described tremendous euphoria just before a tonic/clonic hits, sees Smurfette every time (I think just before he goes unconscious because he always remembers her). Déjà vu he knows all to well, keeping a track record/ a note of these makes looking back a bit easier. His often strong déjà vu's do not precede T/C.
 
Hi,

Since I was a young boy, I have been having the following symptoms:

1)Visions (always the same scenes, never triggered by anything external that I am aware of). Once the visions are over, I can hardly remember them, but I know that I have the same ones each time.

Hi Joseph,

My auras are similar to the visions you describe but my auras are usually dreams.
I have a strange dream come in my head which is usually the same type of dream but the only time I remember the dream is when I have an aura. The aura is usually followed by a partial seizure but sometimes I have just had the auras on their own. Not long after the funny dream comes in my head it goes blank & I don't remember anything until after I come out of the seizures which is usually a few mins later.

Have you ever tried to explain what these visions are to a neurologist or epitiologist?
When I 1st told my neurologist about the funny dreams he just said that they were auras or warning seizures. When I saw an epitiologist & told him about the aura being a strange dream he asked me to describe the funny dream. Because I usually only ever remember the dream when I have an aura it was very hard to describe what the dream was about & all I remembered was that it may involve going somewhere.
 
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Welcome jmoore. Sounds very much to me like Simple Partial seizures. There are simple partials (also known as 'auras'), and complex partials, and with simple partials you do not lose consiousness. I have had them for 17 years and most of what you're describing is identical to how I describe mine (except for number 3 I don't suffer from memory loss specifically around that time, and also my 'feeling' is opposite - fear rather than euphoria). Other than that it's bang on. In the past 8 years I have also had 5 grand mals and am on the waiting list for the eeg video unit as my epileptologist would like to look at surgery.
I apologize to lunamoth79 but I strongly suggest disregarding the comment 'don't worry about it!' - for your own safety. This is something that needs to be taken seriously, at all times. Yes you may not be having grand-mals now but AT ANY TIME a simple partial can turn into one, or into a complex partial in which losing consciousness is also a possibility. It's likely that one stays conscious but the brain 'shuts off' and the person loses ability to rationalize and maintain awareness, ie: walking out in the middle of traffic.
It would be great to get tested and find out it is not epilepsy and you don't need AED's, but there's no way of knowing until you do. Please make an appt with your doc to get referred to a neuro so you can start figuring it all out. Not addressing it or worrying about it is potentially quite dangerous. I'm not trying to scare you here but as they sound to me so much like simple partials I just hope you can get the help you need. All 4 in your list are found below:

Simple Partial seizures are usually put into categories depending on the type of symptoms the person experiences:

MOTOR seizures:
These cause a change in muscle activity. For example, a person may have abnormal movements such as jerking of a finger or stiffening of part of the body. These movements may spread, either staying on one side of the body (opposite the affected area of the brain) or extending to both sides. Other examples are weakness, which can even affect speech, and coordinated actions such as laughter or hand movements.

SENSORY seizures:
These cause changes in any one of the senses. People with sensory seizures may smell or taste things that aren't there; hear clicking, ringing, or a person's voice when there is no actual sound; or feel a sensation of "pins and needles" or numbness. Seizures may even be painful for some patients. They may feel as if they are floating or spinning in space. They may have visual hallucinations, seeing things that aren't there (a spot of light, a scene with people). They also may experience illusions—distortions of true sensations. For instance, they may believe that a parked car is moving farther away, or that a person's voice is muffled when it's actually clear.

AUTONOMIC seizures:
These cause changes in the part of the nervous system that automatically controls bodily functions. These common seizures may include strange or unpleasant sensations in the stomach, chest, or head; changes in the heart rate or breathing; goose bumps.

PSYCHIC seizures:
These seizures change how people think, feel, or experience things. They may have problems with memory, garbled speech, an inability to find the right word, or trouble understanding spoken or written language. They may suddenly feel emotions like fear, depression, or happiness with no outside reason. Some may feel as though they are outside their body or may have feelings of déja vu ("I've been through this before") or jamais vu ("This is new to me"— even though the setting is really familiar).
 
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