Hello everybody - new to seizures and scared

[Ori]

Greetings all.

Since last November I've been having puzzling and frightening episodes, mostly at night, during which I lose consciousness. Sometimes I am aware of them, particularly as I am going to sleep or waking up. I feel myself losing consciousness. When I can refocus, I have no recollection of the event itself - but sometimes have trouble breathing. The episodes I know about are happening two or three times a week, on average.

Other times during the night I'm not aware, but my family has heard me making odd noises and when they check find me with limbs shaking and are unable to rouse me. Afterward I have no memory of the event.

One very odd feature is that almost always the events I can remember occur when I am changing positions in bed, for example if I roll from my back to my left side, or if I move my legs up.

I've also had a few episodes while I'm sitting up during the day (never standing), but those aren't frequent.

My doctor has had me in hospital twice for heart and brain tests. These show nothing unusual. So far no one has been able to monitor me during one of the episodes. Right now I am having tests done at a sleep center but those aren't complete yet.

The neurologist at the hospital has put me on Dilantin, but this certainly isn't stopping the seizures.

Does anyone on these boards have seizures similar to the ones I describe? I feel isolated since no one else I know has had such issues.

Thank you all.

 

[Nakamova]

Hi Ori, welcome to CWE!

What happens during the daytime episodes? Do you have any warnings at all? Do you lose full consciousness, or is it like "spacing out"? How long do the episodes last? How long are you unconscious? From what you describe it sounds as if you may be having complex partial seizures, and/or tonic-clonics. It's not unusual to have trouble breathing after a seizure, especially a tonic-clonic.

It's also not unusual to have a negative EEG. That doesn't automatically rule out a seizure disorder. Depending on when the abnormal brainwaves occur, or where they originate in the brain, the EEG might not be able to record the activity.

Dilantin is usually the first line drug prescribed for a suspected seizure disorder, primarily because a high loading dose can be administered right away. (Other AEDs need to be tapered onto slowly, over the course of weeks or months, in order to minimize allergic reactions). But Dilantin doesn't work for everyone, and it's possible that your seizures (if that's what's going on) would respond to an AED other than Dilantin.

Will the sleep center be videotaping you? This might help the doctors to see what you are experiencing.

While awaiting diagnosis, do what you can to take of your general health -- make sure you are eating properly getting sleep (if possible), and avoiding stress.

Best,
Nakamova

 

[Zoofemme]

Hi Ori, welcome to the forum THe folks here are really great and supportive...many have nocturnal seizures and may be able to help you out withe the questions you have. The beginning is always a frightening time, a big hug to you while you struggle through it.

 

[carlos.fonke]

Ori, my seizures are nocturnal and partial but they happen in the middle of the night.

They were frightening at first but you get used to them. In fact, I almost sleep through them now. If you are conscious during the seizures be extremely careful about standing or walking because they could advance to tonic clonics.

Just find a neurologist you trust and stick with the treatment. Research other drugs to see if they might be more suited to your needs.

It will get easier.

 

[Ori]

Hi Ori, welcome to CWE!

What happens during the daytime episodes? Do you have any warnings at all? Do you lose full consciousness, or is it like "spacing out"? How long do the episodes last? How long are you unconscious? From what you describe it sounds as if you may be having complex partial seizures, and/or tonic-clonics. It's not unusual to have trouble breathing after a seizure, especially a tonic-clonic.

It's also not unusual to have a negative EEG. That doesn't automatically rule out a seizure disorder. Depending on when the abnormal brainwaves occur, or where they originate in the brain, the EEG might not be able to record the activity.

Dilantin is usually the first line drug prescribed for a suspected seizure disorder, primarily because a high loading dose can be administered right away. (Other AEDs need to be tapered onto slowly, over the course of weeks or months, in order to minimize allergic reactions). But Dilantin doesn't work for everyone, and it's possible that your seizures (if that's what's going on) would respond to an AED other than Dilantin.

Will the sleep center be videotaping you? This might help the doctors to see what you are experiencing.

While awaiting diagnosis, do what you can to take of your general health -- make sure you are eating properly getting sleep (if possible), and avoiding stress.

Best,
Nakamova

Thanks to you and all for replies.

I lose full consciousness during the episodes. (I *think* I am also spacing out at times during the day - definitely caught that happening yesterday.)
My family has been able to witness just a few events. On their report, I was unconscious once for one minute and another time for three minutes.

Yes, I do get warnings, though these are difficult to describe. Beforehand I have distinct but subtle physical sensations. After the seizures, I feel odd for part of the day too.

The sleep center isn't videotaping the sessions. I wish. That would make a lot of sense.

Do you have any information as to why a change of position would either trigger or precede seizures? When I'm aware of the episodes, as for example when I am settling down for sleep or waking up, they often follow changes in body positions such as rolling from back to side or moving a leg up.

 

[JRuner]

Ori, welcome I hope that you get some positive answers soon about both sleep and seizures and that your seizures respond quickly to any treatment. There are many wonderful, knowledgeable and very supportive people here.

God Bless and take care!

John

 

[Nakamova]

Hi Ori --

Sometimes a shift in position can change the blood flow to the brain. If you already have low seizure threshold, then that can be enough to trigger the seizure. Stretching and extending your arms and legs can also have the same effect.

It could also be that the seizure is already "in the works", and the shifting is a sign that your body is about to seize, a bit like some animals can be restless before a storm.

Make sure to write down anytime you experience something unusual. Be persistent about getting a doctor to pay attention. Ask the sleep center if they can refer you to a neurologist/epileptologist.

 

[Endless]

Ori,

Welcome to CWE. It's a great place, with wonderful, supportive people.

I have nocturnal seizures, too, and they used to scare me to death. Most of my nocturnals are simple partials (that I know of!), like fear seizures, but once I had a complex partial and woke up outside in the freezing pouring rain, no shoes, no jacket. How I got outside I have no idea. During the day I have seizures where I'll walk around, but this was new to nighttime.

I've kind of gotten used to the night time thing. Now I just kinda swear under my breath when I realize one has happened.

Hang in there.

Endless

 

[manda817]

I am dealing with a similar experience with my seizures, I have had 2 now during my sleep, waking up with a mangled tongue, in the ER not having any idea what is going on. Ever since my first grand mal seizure, i have been getting a deja vu type feeling, with a smell that comes with it. My feel tingle, working up my legs, unable to talk for a few seconds, and it passes leaving me feel off.. Last week at work, it happened while sitting at my desk. I let my manager know I was having an "episode" and the next thing I knew I woke up in the ER. I am terrified this will never stop! I am actually up right now for my EEG study in the morning, but am scared they won't find anything wrong... I am struggling with the WHY and HOW of all this. I am sorry you are going through it also.

 

[not_so_tough]

I seize in myself my husband says I don't remember them but they happen while I am awake to alone with many other kids of seizures. The Odd noises I can relate to and the test can be brutal. But answers are the best no matter how scary. Atleast with answers maybe one day they will find a cure. I am new here and need coping friends. If I can answer anything just ask, may I suggest a medical bracelet. And when your done convulsing have someone put their hand in yours and ask you to squeeze when you regain consiousness. but the fear and anger I have not yet learned to manage, any idea's?

 

[manda817]

I am needing help on anger and fear also. This is all so new to me. I am scared I will have another one, and mad that I don't have control over it.

 

[Blondie47]

Ori

Welcome! This is a wonderful community for support and information.
It is the best place to sort things out.

My daughter got her diagnosis at an accredited epilepsy center. Her care has been excellent. Here is a link to nationwide centers:

www.naecepilepsy.org

Take Care:e:

 

[Ori]

Thank you for all your responses, friends. Yes, anger...and fear. I live with those twins daily now.

This week I went to a brand-new-to-me female neurologist who immediately diagnosed me as having seizures. Finally. My usual doctor kept telling me my issues were probably caused by snoring (!!!!), although I told him repeatedly the episodes happened not only at night (at times when I was awake) but also during the day. I do not snore during the daytime.

The new specialist gave me a medication called Vimpat and has scheduled me for another EEG as well as more appointments with her. She also told me that the seizures are most likely the very belated result of the spinal meningitis I had as a young child. When I brought that up with the first (and only other) neurologist I've seen, he said that would have had nothing to do with seizures now.

It was exponentially frustrating to suffer the seizures and not to have them recognized as such.

 

[Spookz]

Hello again everyone and thanks for all your responses. I am scheduled to go into hospital on June 7th for a weeks seizure study. This is one time I hope I do have seizures! Have had only one Eeg before whilst in hospital which showed nothing unusual. Does anyone have episodes that involve not only myoclonic jerks (both sides of the body) and weird spasms of the mouth? My upper lip is jerked upwards quite violently and often ends in a sneering type of motion. This occurs just about every night just as I am drifting off to sleep. My new specialist has not actually heard of this occuring before. Even my forehead seems to wrench back into the hairline on occasion. The other symptoms include inability to speak, feeling 'spaced out', and twitching eye muscles.
Any ideas what type of seizures I am having? Take care all and thanks again.

Spookz

 

[RobinN]

She also told me that the seizures are most likely the very belated result of the spinal meningitis I had as a young child. When I brought that up with the first (and only other) neurologist I've seen, he said that would have had nothing to do with seizures now.

It was exponentially frustrating to suffer the seizures and not to have them recognized as such.

Do understand that seizures are the symptom. You were seizure free for years so something has reduced your seizure threshold recently. Find that cause and you might find a way to raise your threshold again.

 

[Ruth]

Hi Ori, welcome to CWE.

You will get a lot of support here.

This forum was made out of love by Bernard for his wife Stacy. That love permeates throughout the whole forum.