Hello everyone

 

In the past 9 months I have had 7 'attacks', of a seizure like event, that has been un-diagnosed, thus far. I have seen a neurologist and had an EEG and MRI scan of my brain, finding no strange activity and have basically had epilepsy ruled out. These attacks all follow the following chain of events:

I will wake up (usually between the middle and the end of my regular sleep), unable to breathe. Literally I can't take a breath, nor can I release one. I can't speak. Shortly after which (3 seconds or so) the left side of my face will start spasming/twiching, uncontrollably and sometimes violently. Sometimes certain parts of my body will shake as well, other times I have control over my arms and legs and can move them as I wish to. I will be conscious and able to think clearly throughout the whole thing, my vision will go shortly after the spasming starts (witnesses have said my pupils rolled back under my eye-lids, leaving nothing visible but white). This will last between 20 seconds to a minute, where they last longer they are more violent and uncontrollable.  I can be heard making a slight choking sound whilst they are happening. When they are finishing I will finally be able to take a small breath, after which I will be heard making a loud, snoring-like sound when I breath in (for a couple of breaths). The left side of my face will droop slightly afterwards and I won't be able to speak, when I try to I sound as though I have had a stroke, the words are completely un-recognisable and slurred. This will last for around 2 minutes when everything will be back to normal and I will feel completely fine. My ability to speak comes back, no headaches, no loss of strength etc. My face will go back to normal within around 10 minutes.  

 

That is the basic structure, here are where they vary: Three times I have passed out afterwards, falling back to sleep. These attacks are harder to remember as clearly as the other ones. Upon waking I don't really remember having them, they seem like a distant dream and I can be a little confused for a while. Later in the day I start to remember them a little more clearly. 

One of these attacks happened whilst I was awake, it happened on the same day as I had an attack in the morning. During this attack my face went purple. Instead of resting I did a little work in the hot sun and had sex, other than this I have always took it easy and been fine. 

One time I pissed my pants as the attack finished.

I can feel the attack coming on in my dreams with the last 2, in fact in my dream I dreamt an attack was starting right before waking up experiencing one. Other times I have felt as though I was struggling to breathe whilst I was asleep, but woken up before an attack started.

 

I worked on a cruise ship for 6 months and the first 2 happened within 6 weeks of being back. The next one happened a month later when I went to Croatia. I went 3 months attack-free (staying in England with only 1 shorter trip to Africa). Then I went back-packing across South America and had the 2 in one day within a week of being there. Another one around 2 months later and the last one one week after I returned home, to England. They always seem to happen when I'm travelling, in a new environment. I also had my first girlfriend about a month before the first episode. Whilst an overall great relationship, we were long distance and this was the cause of some upset and stress. I've been with her from then, until now, basically the whole time I have been having attacks.

I don't know what I want to achieve by posting here. If anyone has any kind of advice, might have some clues as to what it could be etc, I'm all ears.

I have a video of one of the attacks, it is poorly filmed and only the last half, but could give you more of an idea. If anyone would like to see it, please let me know and I'll upload it.

 

Thanks for listening.

 

Mark