It is difficult for me to actually explain what has been happening to me lately, hence my reluctance to share. I keep saying I have been having episodes. But I do not say what these episodes are or how they happen. So when I say I have had another one of my episodes, I know full well that you are left with questions and misunderstandings.
This is not done on purpose.
I am not being coy or rude.
I just cannot say exactly what my episodes are myself.
All I know is that I have them. The last big one was on May 17 2016, but I had another minor one Tuesday August 2 2016.
So here are the facts for you and hopefully someone else can share their similar experiences with me to help. Or at least I will know that I am not holding you at bay any longer.
What do my episodes feel like?
My head begins to get hot. I feel a little flushed for about one minute and then the flush increases a lot and starts to flood my body. My feet tingle. I can feel my cheeks turn red and the scalp below my hair gets hot, often breaking into a sweat. My eyesight starts to go out of focus and the left side of my field of vision disappears completely. The right side looks like I am trying to see with a piece of fabric held up to my eye. I become disoriented. The left side of my body becomes numb. By this point my temperature is high and I am bright red and have broken into cold sweating. I often have a strong urge to go to the toilet and my mind agrees with me to a point where I become adamant and almost panicky about the need. Yet I don’t actually need to go. I can speak and think clearly otherwise. I should not try to look at anything, read or write. I cannot read or write in fact and trying to do so will only nauseate me. I become unbelievably tired. These episodes last about five minutes and I have been known to vomit if my temperature rises too much. I also can lose consciousness and my mind may stop making full memories for hours or 1 to 2 days afterwards. I have once had convulsions during the moments of lost consciousness.
What precedes these episodes?
Nothing to note. I have always been well fed, recently. My blood pressure during an attack is at my typical range. My temperature prior does not have an indicator. Once I had a slight cold and was studying with a friend at university. Another time I was simply sitting on the sofa after dinner. I have never been physically active, highly stressed or starving myself/intaking foreign or hazardous substances. In the days and weeks before my lupus indicators have been slightly more elevated but not significantly, nor have they even been present during hospital tests (I am usually admitted during an episode).
What are the after effects?
As mentioned, loss of memory. I also have trouble with my concentration for a few days following. I develop a nasty migraine that lingers for a decent 6-12 hours. I try to avoid sleep in case it impacts like a concussion or I get nausea. I hate to be in a foreign place due to my heightened sensitivities so being in hospital or at someone else’s house makes me hysterical, disoriented and nauseated.
What causes these episodes?
The doctors do not know, or so they say. I have not yet been assessed properly. Last time they were sensitive to the fact that I was already highly anxious (it was during my exams and closely after an episode). I will see them next Monday August 15 for further news. It sounds like maybe it is a heart and blood pressure thing. I felt like they were leaning towards epilepsy before but now more like a fainting thing.
So now you know what my episodes are. And what I mean when I mention them. I hope this helps you understand a little better what I have been going through.