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How to help someone cope with PNES?
I mentioned on my introduction thread that I have a loved one (my BF) who has PNES. I am 99% sure that what he has is (psychogenic non-epileptic seizures). I only found out about this 2 days ago when my BF had another episode because we thought it was a form of anxiety attack. Talked to a close friend about this and he mentioned it might be epilepsy, which led my research to multiple articles online and this forum.
My boyfriend Paul is currently living in the UK. He is 24. I'm in the US at the moment so it is extremely hard for me to be "there" for him. The most I can seem to do is talk to him and make sure he is doing fine.
History-wise, he has had a collapse at home one time after an argument with his father. That was years ago. His childhood wasn't a happy one. He had a childhood trauma and the cause of it stemmed from his father. He is very conscious of this fact. He doesn't hide it when he talks to me. Since he we met, he had moved out of the house with a brother to get out of the hell hole, even living on the streets for a period of time.
Now the family and him are finally out of his father's life, but the emotional scars are still there. He was fine for a while until his older brother (who got out of the house with him at the same time) rapidly changed. His life styles, things that he valued (like religion)...he completely changed within these past 2 years. Witnessing these rapid changes in his brother escalated the whole condition too because he is reminded again of his father. They live in the same apartment currently.
He would develop this chest pain when he is stressed out. So Paul went to see a doctor, who had him on a 24-hour ECG. He had seen about 6 doctors so far and NONE of them had seen anything. They said it was stress and gave him some medicine.
The medicine didn't help. And he still has chest pain when stress happens. Work doesn't give him stress. He has also been pretty active -- he does martial arts, so when this pain rendered his body weak to the point where he couldn't even walk we were like this is a problem.
Talking to his sister who had a child trauma also, she said it could be PTSD. She herself had seen a therapist for years and now she's doing a lot better. She suggests that he seeks help as well to come to terms with things that bother and trigger these emotional cycles.
He had a PNES episode in January when we were on vacation. That was the first time that I had witnessed it. It scared too death because I thought he was having a stroke or something. He came out of it and was ok, but just weak.
Then he had another one about 2 nights ago, which led me to look all over the internet for what this could be because I don't believe it's merely an anxiety attack. The physical manifestation...the episode was too extreme that he just didn't have an emotional breakdown, but also his body was paralyzed the whole time.
What happened was he was in the living room playing video games after a day of work. His brother was in the background talking to someone about something. This comment hit him home because it triggered the feelings he had during childhood. He couldn't calm down, he couldn't ignore it and he knew that he should, but he just couldn't. The emotional pain also gave him physical pain and it was just so much he wanted to shut it off. He had to literally walk out of the room and we talked again once in the bedroom. By this time he had the chest pain again and was feeling weak. Nothing I said helped because for all that really mattered at that point is the pain in which he wanted to desperately remove.
Then he had the episode. He was lying in bed talking to him on webcam. He couldn't stand up or move much because of the pain. He was already stressed out physically and emotionally. Then his arms started twitching...the tremors, and he had the staring/gazing spell. He couldn't move at all and he couldn't verbally respond to me. During this whole he was conscious though because I was telling him it will be ok and asking him question. The twitching stopped after about 1-2 minutes but his body was paralyzed, still the stare and nonresponsive to my verbal attempts to keep him with me. Then as time passed he could utter at a time an unintelligible word. But I kept him with me trying to calm him in anyway possible. Again, he tried to tell me that he loves me because by now I could understand what he was saying -- a sign that he was coming back. About 15 minutes into that, he suddenly snapped out of the episode...his eyes moved, and he could talk normally again. The whole time he was conscious, he said he could hear me by responding to my questions and trying to say something.
I just fear that this was just the first. He rested afterwards and I watched over him. He told me that this time he felt a lot weaker. It made me cry because I thought I could lose him. That's how I came to find out more about epilepsy and this condition.
He is very reluctant to see another doctor these days because he doesn't want to go in and be disappointed again. He says it makes worse when he has hopes that things will be better, then turns out they can't find anything.
So far I persuaded him to see a therapist. Don't know how expensive that would be but it's worth a shot. He needs someone to talk to that understands what he is going through.
I have questions:
- When you try to seek a psych counselor...how do you normally go about doing that to find someone who is good at what they do, or someone who has experience with patients with PNES, PTSD, or something similar?
- How do you help someone who is going through PNES, epilepsy, or someone who had an emotional trauma? Is there certain mindset that would be helpful? Because I think as much as I'd like to help him by talking to him...I can't be helpful because my rational mind doesn't work with his mindset because I haven't experienced this myself. Also the fact that he likes to keep things to himself makes it worse and I'm basically the only one he talks to about anything. I finally got him to talk to his sister and he felt a lot better because as he stated "she understands."
- What would be a no no in this situation? He's sensitive right now so I don't even want to push anything on him. I don't want him to feel cornered, feel misunderstood and forced to do things. But then again if I don't do anything, will he get better?
Sorry this is such a long post.
I mentioned on my introduction thread that I have a loved one (my BF) who has PNES. I am 99% sure that what he has is (psychogenic non-epileptic seizures). I only found out about this 2 days ago when my BF had another episode because we thought it was a form of anxiety attack. Talked to a close friend about this and he mentioned it might be epilepsy, which led my research to multiple articles online and this forum.
My boyfriend Paul is currently living in the UK. He is 24. I'm in the US at the moment so it is extremely hard for me to be "there" for him. The most I can seem to do is talk to him and make sure he is doing fine.
History-wise, he has had a collapse at home one time after an argument with his father. That was years ago. His childhood wasn't a happy one. He had a childhood trauma and the cause of it stemmed from his father. He is very conscious of this fact. He doesn't hide it when he talks to me. Since he we met, he had moved out of the house with a brother to get out of the hell hole, even living on the streets for a period of time.
Now the family and him are finally out of his father's life, but the emotional scars are still there. He was fine for a while until his older brother (who got out of the house with him at the same time) rapidly changed. His life styles, things that he valued (like religion)...he completely changed within these past 2 years. Witnessing these rapid changes in his brother escalated the whole condition too because he is reminded again of his father. They live in the same apartment currently.
He would develop this chest pain when he is stressed out. So Paul went to see a doctor, who had him on a 24-hour ECG. He had seen about 6 doctors so far and NONE of them had seen anything. They said it was stress and gave him some medicine.
The medicine didn't help. And he still has chest pain when stress happens. Work doesn't give him stress. He has also been pretty active -- he does martial arts, so when this pain rendered his body weak to the point where he couldn't even walk we were like this is a problem.
Talking to his sister who had a child trauma also, she said it could be PTSD. She herself had seen a therapist for years and now she's doing a lot better. She suggests that he seeks help as well to come to terms with things that bother and trigger these emotional cycles.
He had a PNES episode in January when we were on vacation. That was the first time that I had witnessed it. It scared too death because I thought he was having a stroke or something. He came out of it and was ok, but just weak.
Then he had another one about 2 nights ago, which led me to look all over the internet for what this could be because I don't believe it's merely an anxiety attack. The physical manifestation...the episode was too extreme that he just didn't have an emotional breakdown, but also his body was paralyzed the whole time.
What happened was he was in the living room playing video games after a day of work. His brother was in the background talking to someone about something. This comment hit him home because it triggered the feelings he had during childhood. He couldn't calm down, he couldn't ignore it and he knew that he should, but he just couldn't. The emotional pain also gave him physical pain and it was just so much he wanted to shut it off. He had to literally walk out of the room and we talked again once in the bedroom. By this time he had the chest pain again and was feeling weak. Nothing I said helped because for all that really mattered at that point is the pain in which he wanted to desperately remove.
Then he had the episode. He was lying in bed talking to him on webcam. He couldn't stand up or move much because of the pain. He was already stressed out physically and emotionally. Then his arms started twitching...the tremors, and he had the staring/gazing spell. He couldn't move at all and he couldn't verbally respond to me. During this whole he was conscious though because I was telling him it will be ok and asking him question. The twitching stopped after about 1-2 minutes but his body was paralyzed, still the stare and nonresponsive to my verbal attempts to keep him with me. Then as time passed he could utter at a time an unintelligible word. But I kept him with me trying to calm him in anyway possible. Again, he tried to tell me that he loves me because by now I could understand what he was saying -- a sign that he was coming back. About 15 minutes into that, he suddenly snapped out of the episode...his eyes moved, and he could talk normally again. The whole time he was conscious, he said he could hear me by responding to my questions and trying to say something.
I just fear that this was just the first. He rested afterwards and I watched over him. He told me that this time he felt a lot weaker. It made me cry because I thought I could lose him. That's how I came to find out more about epilepsy and this condition.
He is very reluctant to see another doctor these days because he doesn't want to go in and be disappointed again. He says it makes worse when he has hopes that things will be better, then turns out they can't find anything.
So far I persuaded him to see a therapist. Don't know how expensive that would be but it's worth a shot. He needs someone to talk to that understands what he is going through.
I have questions:
- When you try to seek a psych counselor...how do you normally go about doing that to find someone who is good at what they do, or someone who has experience with patients with PNES, PTSD, or something similar?
- How do you help someone who is going through PNES, epilepsy, or someone who had an emotional trauma? Is there certain mindset that would be helpful? Because I think as much as I'd like to help him by talking to him...I can't be helpful because my rational mind doesn't work with his mindset because I haven't experienced this myself. Also the fact that he likes to keep things to himself makes it worse and I'm basically the only one he talks to about anything. I finally got him to talk to his sister and he felt a lot better because as he stated "she understands."
- What would be a no no in this situation? He's sensitive right now so I don't even want to push anything on him. I don't want him to feel cornered, feel misunderstood and forced to do things. But then again if I don't do anything, will he get better?
Sorry this is such a long post.
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