Seizures?: Hi everyone I have scleroderma fibromyalgia... - STARS


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Hi everyone I have scleroderma fibromyalgia and arthritis in my spine and hips as well as that I have been taking seizures for 2 years my neurologist said it's non epileptic seizures but I think it's caused by my blood pressure and palpitations as when seizures happen I feel like the blood has drained out of me my heart races and feel weak and nauseous I start shaking and have to lie down as full seizure takes hold I am aware of this happening but am too weak to respond my hands and feet feel numb and tingly has this happen to somebody else and what have they been told what it is thank you for any advice on this.

2 Replies

Hi Irishgal, just seen your post. I've been having none epileptic seizures for nearly 3 years now, and I also have very extreme panic attacks. I guess everyone could experience quite different things with this condition as my understanding of it is that it's the brains way of coping with extreme distress, which could be a very personal thing. My seizures are more like a shut down of my brain. My forehead area feels tight and thick to start, then the seizure will happen soon after. It can be different every time. Sometimes I will fall over and shake, sometimes I will thrash about and kick my legs, some times I slur my speech, sometimes I can't speak, sometimes I speak total rubbish none stop.

The panic attacks I experience are more like what you describe. The bad ones can start with me fainting, low blood pressure, heart palpitations and my blood feels fizzy. This can lead to me going into a seizure.

It's taken me a long time to understand what's going on and I am getting help, but it's not a well understood condition.

I am trying out different things. My hormones seem to play a big part, as does stress and tiredness. I did some google research and found a few people saying that Omega 3 can help, especially in the form of red krill. Im giving it a go to see if it improves things. I have also been told that learning mindfulness techniques could help me control what's going on because my brain needs to learn to make new path ways which help it deal with stress. The seizures happen now even at the slightest stressor as my brain has learnt to cope by just switching its self off (thanks brain!)

It's been very hard to get people in to fully understand that this is something I can't control. I feel very strongly that it is all linked to my being very anxious and distressed due to very stressful life events.

I don't think there are any solid answered, but I have hope that it could be improved.

Hope that helps you a tiny bit. 😊

irishgal in reply to KatieIre

Thank you for your advice some times it is like hitting a brick wall one step forward then 2 steps back but it's nice to know I'm not going crazy lol

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