First seizure

[sharonj]

Hi, I'm brand new to this and a llittle shellshocked! I am 54 and 3 days ago had my first Grand mal seizure. As far as I remember nothing was different beforehand and I remember almost nothing until I reached hospital. My husband was alerted by a groaning sound and came in to find me convulsing and foaming. Apparently I went blue and he thought I was stopping breathing so he gave me chest contractions.
I have had an mri but need to have that repeated on Tuesday although it seems for technical reasons. So im in limbo. My husband will barely let me out of his sight and I just don't know how to live normally? Please help!

 

[Ruth]

Welcome Sharonj,

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

Your husband is worried, he does not know what to expect. He probably knows very little about epilepsy. Sometimes, my husband has had to worry about me.

 

[sharonj]

Thankyou xx

 

[Nakamova]

Hi sharonj, welcome to CWE!

:hugs:

I still remember my very first seizures (over 15 years ago) and how disorienting and disturbing the whole thing was when I came to in the hospital.

A first-time seizure can be a fluke, and that could well be the case for you. Did the docs do an EEG at the ER? That would also be a good test to have done. In the meantime, can you think of anything — ANYTHING — that might have brought this on. Allergic reaction? Unusual fatigue? Infection or illness? Spiking hormones? Have you experienced any unusual sensation of any sort over the last few days/weeks/months?

I can understand why your husband is being overprotective -- a grand mal seizure (called tonic-clonic these days) can be a scary thing to witness. I think it can be harder on the viewer than on the person having one. Here are a few things to tell your hubby: 1. The person having one is in no pain during it. 2. The groaning sound is "normal" -- often there will be a groan or a shriek at the start of a seizure. It's the sound made by a sudden intake of breath to bring oxygen to the brain. 3. Turning blue is "normal" -- also related to the body moving blood and oxygen away from the extremities and up to the brain. 4. The memory loss is normal too. 5. Those of us who have had many more than one tonic-clonic seizure can tell you that it's not the end of the world.

HOWEVER, since at this point you don't know the cause of the seizure, being a little cautious is wise. No driving of course. Treat yourself gently -- make sure you are eating and hydrating properly. If you need extra sleep, go ahead and sleep. Did the hospital give you any medication to take? Have you been referred to a neurologist? Were you given the name of a doctor to call with any questions? It might help if both you and the hubby could chat with someone who could give you a sense of how to proceed until you have more information.

Best,
Nakamova

 

[sharonj]

Thankyou so much, tbat helps a lot. Such a scary time. I have my second mri on Tues followed by appointment with consultant neurologist. The hospital gave me an ecg(I think) , blood tests etc. I have had a chest infection recently and the feeling I was going to have a panic attack but quite minor really. Surely that couldn't have brought it on?
I must have an angel looking down though because 20 mins beforehand I was walking along a busy main road with my 3 year old grandson!
I am a teacher and cant face work until I have seen the neurologist again.

 

[Nakamova]

I have had a chest infection recently

Were you on any medication for the chest infection? Sometimes a seizure can be a bad reaction to a medication.

the feeling I was going to have a panic attack

This could possibly be a kind of seizure called a "partial seizure". During a partial seizure you are fully conscious but you experience unusual sensations. These can include a sensation of dread, "butterflies" in the stomach, sudden changes in heart rate or body temp, goosebumps or tingling sensations, etc. There are many other kinds of partial seizure symptoms, but those are the ones that match up most closely with the "panic attack" thing. Definitely make a note of it (and anything else that strikes you, even if you're not sure whether it's relevant) and let the neurologist know. It can help to write down any and all questions and bring them to our appointment with the neuro. Also write down the answers -- your husband can help with that.

 

[Cint]

Nakamova is right. The 1st seizure IS such a scary time. I've had E for over 30 years and my two grown kids have seen all types of seizures, so you will survive, so will your hubby. A change in your hormones could've brought on the seizures, too. Or low blood sugar, so make sure all this is mentioned.

Hang in there!

 

[sharonj]

Thankyou. I will mention it at my appointment. I had amoxcicyllin but have had this many times.

 

[valeriedl]

I had my first seizure about 12 years ago at the age of 38. The drs have no idea what caused it. I had to be put into a coma during that first seizure because they could not get it to stop.

When I came home I had to move back home with my parents and they wouldn't let me out of their sight. If I was in the shower someone would sit in the bathroom with me. If I went to the bathroom I had to leave the door open and someone stood out in the hall. Basically the only thing that I did on my own was sleep in the bedroom by myself and I'm really surprised they let me do that.

My seizures were very uncontrolled when I first started having them, probably had at least one if not more a day. I did understand my parents not wanting me to be alone in public but when we did go out it was almost like they wanted to put a leash on me so I didn't wander off. If my parents went out I couldn't be in the house alone so someone had to come stay with me or I had to stay with someone, it was like I always needed a baby sitter.

As the years went by I did get more freedom to do things on my own, it took about 8 years before it started happening.

Now I have on average of 7 complex partials a month with a few simple partials. I will have tonic clonics a few times a year. I'm pretty much aloud to do everything on my own now.

There are things that I don't feel comfortable doing on my own because my seizures might sneak up on me out of no where. I don't drive, plus it's illegal until you go so long with no seizures, it varies from state to state. I don't get up on a ladder more than about 4 steps but I feel fine using a stepping stool. I really don't like to cook on the stove or oven when I'm alone, I've had seizures several times while I've done it, but some people do feel fine doing it. There are a few other things but not many.

The "butterflies" in the stomach, sudden changes in heart rate or body temp, goose bumps or tingling sensations do sound like simple partials. These are some of the same things that happen to me when I have one. As Nakamova said you are fully conscious during them and usually remember they happened. During a complex partial or tonic clonic you black out and usually don't remember it happened at all.

Also keep track of what happens, a seizure diary, as Nakamova described . This will help your dr know more about what's going on with you. I always write down any questions I have or things I want to tell my neuro because if I don't I always forget to. If he has any suggestions or questions for you that you aren't able to answer make sure you write them down also, because if you're like me you could forget what they were by the time you get home. Have your husband come to your appointment with you if he's able to because he might beable to answer questions that the neuro has that you might not.

 

[sharonj]

Thankyou so much Valerie, you have obviously got a huge first hand knowlege of this! I have to have a repeated mri on Tues (technical problems apparently) so I will take along the notes you suggest. It is exactly the same here in UK, practically the first thing I was told was Don't drive!
Thankyou again and best wishes
Sharon