I sometimes get emails with questions of other PWC’’s if I know what a certain complaint of them actually is. It seemed a good idea to describe my kinds of 'seizures'. Maybe you will find some recognition, of course you can always email me when you have questions.
I call it 'seizures'. because it always goes away. All these 'seizures are being caused when I am over exhausted and or go over my limits. So I suspect that it is just due to the ME and that you can't do anything about it. The more exhausted I am ande the more i go over my limits the more I get some kind of seizure.
Well what kind of 'seizures' do I have...
Paralysis:
I think that this speaks for itself… I am then temporarily paralysed, sometimes for example only my right leg, but most of the time it’s my whole body. During such a seizure I am absolutely not able to move, also talking isn’t possible. The advantage of paralysis is that I then don’t feel any pain anymore. During a paralysis I am fully conscious and so I hear and understand everything that happens around me.
Fall out:
For example I am eating and my arm becomes too tired and heavy to lift it, this is what I call a fall out. It’s a temporarily fall out, which is over with some rest. It’s always that body part which I use at that moment intensively. As I still could walk it were often my legs when I for example walked to the toilet – then my legs suddenly stopped walking. I always still could stay, but I couldn’t get any movement in my legs. Now that I can’t walk anymore my legs don’t fall out anymore. It’s now mostly my arms with for example eating. In contrary to a paralysis I can feel everything with a fall out.
Consciousness descending:
If this happens I always have the feeling as if I will loose my consciousness. My whole body feels extremely exhausted and tired and it costs me a lot of effort to move for example the turn. At these moments I often need the help of Henk to turn me on my other side or to drink etc., because all of this is then too heavy for me. I also have the feeling as if I am far away; my surrounding, Henk, the cats, but also my body. I then also don’t understand what people say to me or what happens around me. Sometimes it is just for a short while, but it can also last for hours. It can even last for days and that I then meanwhile am back a bit.
Missing my strings:
As this happened the first time and I tried to explain it I tried it as follow:
There are those dolls (puppets?) where you pull 1 string and then for example the right arm comes up. Imagine that these dolls have lost their string or that those strings are in a knot... well then it is impossible to let the doll move. This is what happens to me also at that moment. I do feel my body somewhat, but I don’t know how to move... which string do I have to pull. So I am not paralysed, because when I found a string I can move for example a leg. All this time I am conscious and am able to talk, but I just don’t know how to move.
Wrong feeling;
Mostly this happens when I am 'missing my strings'. For example I do feel my leg, but I don't know if this is my left or my right leg. The worst feelinng is when I have the feeling as if my head lays on my back, this of course isn't possible but I still feel it this way. So I actually feel my body wrong, as if my brain doesn't give the right signal. It can also be that I for example lay with my arms crossed and at the point where my arms cross each other I have lost the feeling and I don't know which arm goes to where. During this seizure I am conscious and am able to talk.
Epileptic seizure:
This usually is for about 1/2 - 1 hour. My body parts can fly in every direction and so I regularly have bruises because I hit or kick myself. I often strain 1 or several muscles due to unexpected movements. I always have my eyes closed and I can’t get them open. I am not fully conscious, I am not unconscious but I don’t understand a thing of what is told to me or happens around me. I also can’t react to things or questions. By the time the seizure becomes less I am fully exhausted and I sleep (semi). If I than later on wake up I am paralysed and so I am not able to move due to exhaustion. After such an epileptic seizure I always get paralysed for at least 6 hours. The days after I am still more tired and have more pain due to the epileptic seizure. I often have the days after more consciousness descending.
Crazy in the head:
I find this very annoying and infamous. I am just a small annoying kid who keeps repeating someone. For example I hear a car honk, this can trigger such a seizure. I then keep on saying or singing the word 'toot', If someone says something to me or asks me something I can only answer 'toot'. I don't want this and I can cry of exhaustion and misery, but I still keep on saying/singing 'toot'. Even if I don't have a voice anymore and can't bring out a sound anymore I still keep on repeating that same word. This keeps going on for hours till I finally fall asleep from exhaustion. When I wake up hours later (often the next day) it's luckily back to normal again, but I am still totally exhausted and I often can't bring out any sound for days. The people who witness this for the first time laugh with/about me, because apparently I must be very funny till they realise that it isn't fun at all.
Suffocate-feeling:
This is really scary; it is just as if I am suffocating. I also make that terrible suffocating noise. I know that I have to take a breath, but my body refuses to do this. Or my body refuses to listen to me or my body doesn’t know anymore how to do it. At a certain point my body finally takes a deep breath and then again I can’t take a breath anymore. This can go on like this for even an hour, afterwards I am of course totally exhausted. During such a ‘seizure’ I can’t move my body and I also can’t talk. Of all ‘seizures’ this is the worst one. This ‘seizure’ often happens during an epileptic seizure, but it can also just happen so. I’d love to have oxygen with me, but according to my gp this isn’t good. If you have a lack of oxygen you body reacts to this usually automatic by taking a breath at one point. If you are going to use oxygen the body comes used to this and when you then have again a lack of oxygen and you have no oxygen in the house it can be that your body doesn’t react automatically anymore. Because of this I don’t get any oxygen, but for me it would be a reassurance if I would have oxygen nearby.
Weird feeling -> migraine-attack?:
Than I also have something I call ‘weird feeling’. I feel of course very weird and I have some kind of a warm electricity feeling in my head and a heavy pushing feeling in my head and on my neck. I have the feeling as if everything is real far way and that I every time in between loose consciousness for a few seconds/minutes. People also find my confused. It can be that just before a ‘seizure’ I loose my sight in my left eye and the feeling in my left side of my head. Then I am often gone for hours (asleep/unconsciousness?) and I have the feeling that I can’t move or talk. When I come around a bit I notice that I don’t know anything anymore; I don’t know anymore how to move or to talk. At ‘Painkillers - Med. Cannabis 4’ you can read how all this goes… click here if you want to read it now.
I have to say that I startled a bit as I found out that I have 9 different kinds of seizures. This is next to all my other ‘normal’ ME-complaints, such as exhaustion, neuralgic pain, muscle and joint pain, headache, sore throat, allergies, concentration problems etc. If you want to know what my other complaints are, just check the symptom list here on my site, because except for a few I have them all.
