New girl from UK

[Shalene]

Hello, my name is Shalene. I am 26 and married to my husband Chris, 31, who has had his first seizure on 22 June at 2:15am. I am scared. I was woken up by a noise to find him going through the bin on his bedside. He said he had dropped something in it. I turned back around to try and fall asleep again when I heard the bin fall and then him. After doing four hours of online research, I am positive that what he had is called a grand-mal seizure. His entire body went into a muscle spasm, he was shaking and froth came from his mouth. I put him into the safety position and watched the pain unfold in front of me. I screamed and kept repeating "please stay with me". He started getting the (after researching is called) "no breath" movements and about half an hour later, I managed to have him lying in my arms, calm and awake. He can't remember getting out of bed. He talked about seeing his dad earlier and in fact we have not seen his dad in three weeks. I need advice, I want to help him. I am so afraid. Please be kind, thank you, Shalene

 

[klewlis]

Welcome here--I am new too and just learning. You didn't mention if you consulted a doctor with your husband...? What did they say?

I'm sorry you are both going through this--I am told it is more scary for the family to watch the seizure than it is for us having it since we don't remember it (my brother was pretty upset after watching mine). On the other side it's very scary to have something wrong with you and not know what will happen next.

Best of luck... Keep us posted.


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[Shalene]

Hello, I am so sorry that this happens to you. It is really a very upsetting and scary situation. I can't imagine how you manage to stay so strong. Everyone. He is still asleep after having it, it only happened about 5 hours ago. I have been up all early hours of the morning researching everything I can to learn about what seizures are as well as the types and so on. As soon as he wakes up, I am taking him to a doctor. I am pretty sure they are going to say that he would need to wait to see if it happens again before starting medication. I've read that this is a common thing for doctors to do to determine whether it is epilepsy or NES. I am taking him regardless. When it happened, I tried phoning an ambulance, but I was shaking so much, I couldn't hold the phone. Do you perhaps find that you are tired after a seizure and still a bit shaky? It is so nice to know we can talk and support each other on this. Thank you x


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[klewlis]

I've only had two generalized seizures (both in the same day) and the rest have been partials so I don't have much experience, but after mine I had a killer headache, was very confused, and it took several days for the mental fog to lift and to get my energy back.

When you go to the doctor ask for a referral to a neurologist and all the testing (I was sent for CT, MRI, and EEG very quickly, and it wasn't until after all the tests that they put me on my first med).


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[Shalene]

That is probably the best advice. I can see myself not sleeping anymore, constantly waiting and worrying if it will happen again. I have never experienced this degree of fear in my life. I think he is so scared. I hope this gets sorted straight away. I have also read that most people who get the grand-mal almost never have it again? Have you come across something similar?


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[klewlis]

I don't know about that part, sorry. I'm still new to this world too.

Totally normal to be scared though. I found that my fear was greatly reduced when I met with the neurologist because then at least there was an action plan. Until then it was all unknown and so scary.


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[Shalene]

If I could make one wish today, I would wish for epilepsy and all other seizures, actually all illnesses to not exist. Please feel free to talk to me anytime. Thank you for a leaning shoulder. Best of luck to you.


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[gnault]

If I could make one wish today, I would wish for epilepsy and all other seizures, actually all illnesses to not exist. Please feel free to talk to me anytime. Thank you for a leaning shoulder. Best of luck to you.


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Shalene,
From start to finish how long did it last? I'm trying to remember exactly but if a seizure last longer than 3 minutes, double check, or they repeated seizure without recovering g from the first one then they call it a medical emergency. They may argue that they seem ok but they need to go to the hospital. My wife told me that my tonic clonic last just over twenty minutes.
Hopefully he has seen at least your family doctor by now. I know I kept telling my wife with all the partials that it was nothing, the breathing was just because I was congested, this for another reason and so on.

Wish you all the best in this new adventure.

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[Shalene]

It lasted for about a minute or two, five at most for all to be over. He was talking and functioning again after about 20 minutes to half an hour. It happened very quickly, but it was a very violent one, his entire body was one big spasm, even his face made like a smile because of his jaw muscles. I really hope and pray this was a once-off thing. I have read that it could be, but one can never be certain. We are waiting on cancellations to go as soon as possible. He has been quietly asleep for about 6 hours. He said he had a headache, feeling drained and tired and that his body hurts.


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[Shalene]

It was definitely not a repeated seizure, when I looked up the process, what had happened was exactly according to every website. I did think afterwards that maybe it was only a minute, because time goes slow when these things happen? And do we count the heavy breath stops as part of the seizure or is that technically just the muscle stiffening, shaking part?


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[Frink]

Hi Shalene,
Welcome to CWE.
Sorry your husband had a seizure. It takes a while to get adjusted to living with this stuff.

 

[Shalene]

Thank you. I feel a bit selfish that I am so upset and I can't even imagine what is going through his mind. We have seen the doctor and he is being transferred and marked as urgent to see a neurologist. He will do the CT and EEG as well as blood work. It will be a saving grace if he doesn't have to go through one again. I really hope it was a once-off. He had a relapse a few weeks ago with drug use. I demanded he seek counseling and rehabilitation, so he decided to detox on his own. This has caused his bladder to be very painful and for that he has been taking painkillers by the box. I am strongly convinced that it was caused by pharmaceutical medication abuse or withdrawal symptoms. Hopefully the neuro will help us pinpoint the trigger.


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[Frink]

Drug use and withdrawal can trigger seizures in people who do not have epilepsy.

 

[Shalene]

It makes me furious actually. But after seeing the seizure happening, I am emotionally drained. A lot of people have said it is worse for the person who has to see it happen.


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[knothing]

You are on the correct path with doctor and testing but make sure not to leave out details. The doctors will do their best to find a cause and give a suggested course of action. If the tests come back with no cause identified there is a good chance the drug use will be targeted as the trigger.
Now for the not so great part. One grand mal can lead to another and he may have lowered threshold to where he will start having other types of seizures. BUT everyone can have one seizure in their life and never have another.

Bottom line follow doctors orders, have him keep off the drugs, and take it one step at a time. Yes easier said than done but it can be done. Be as strong as you can.

 

[Frink]

It is very difficult to see someone have a seizure, a very helpless feeling not knowing what is happening or why, and having no way to make it stop.
It can look and sound like the person is being tortured from within or even dying.

I guess the only saving grace of the bigger generalized seizures, like a tonic clonic seizure (grand mal), is that the person seizing is unconscious and not feeling any of it.
All seizures suck but at least you are not aware of this part.

 

[Shalene]

I am being very insistent on the correct procedure being followed. I will do anything to help him get through this or deal with it if it turns out to be epilepsy (his grandfather is epileptic and doctor said it can be genetic in rare cases, although I will trust a neurologist more than a GP)


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[Nakamova]

I have also read that most people who get the grand-mal almost never have it again? Have you come across something similar?

Around five people in every 100 will have an epileptic seizure at some time in their life. Out of these five people, around four will go on to develop epilepsy. So epilepsy is a fairly common development once someone has a seizure. However, given the circumstances you mention above, the your husband's seizure may have been caused by a very specific set of one-time stressors related to his medication (as opposed to an "unprovoked" seizure). If those stressors are determined to be the cause of the seizure, and are easily addressed, then there's a good chance your husband won't develop epilepsy. Until that determination is made, he and the doctors need to proceed with caution.

 

[Shalene]

Absolutely. Thank you for your kind advice, I appreciate it.


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