I want to apologise first to the OP for the derail but I always answer when anyone asks as its spreading awareness of a little-known subset of migraines.
@Vitalogy
Its called Sporadic Hemiplegic Migraine – basically at the time I wasn’t having headaches or the stroke-like symptoms and the rest hadn’t developed that was to come years later.
Looking back then with the consultants, ask about did I have fainting/head injuries etc (no to head injuries apart from bumps when I hit the ground), heart was fine, as were all other tests but I know now that no neurological tests were done apart from an EEG to see was it epilepsy which it wasn’t.
About 2 weeks before all the fainting kicked off I had spent a week in hospital as I had a severe migraine with massive head pain that the GP had been trying to knock me out with painkillers as it was so bad, I was severely dehydrated due to vomiting and couldn’t tolerate light, sound, touch and movement.
They suspected meningitis when I was admitted to hospital, they basically drugged me for a couple of days to give me respite as I was in such severe pain and rehydrated me. The migraine had already gone on for a week before I was admitted and was getting worse and worse, hence the possible meningitis diagnosis. This allowed my body and brain to rest and recover and I was discharged with all clear.
The fainting was always suspected to be heart-related but when my depression, anxiety and hearing voices emerged at the same time scale it was put down to that and hormones. (puberty). My heart showed to be fine so it was finally dismissed to be anxiety and due to my MH.
My family never believed that nor did I as when I made plans with friends it destroyed them and not just school as I loved school too, then it slowed down and faded out only to return when in late 20s, It hung around every so often and would happen in bouts of a few months at a time.
I was sent to a neurologist (who has since been struck off for negligence) as I lost my pincer grasp overnight in my dominant hand, I woke up one morning and my hand was in a ball which couldn’t be unfurled. He looked at the meds I was on at the time which was a list of MH ones and told me it was psychiatric that was without examining me or anything or wouldn’t even look at my hand. It finally came back overnight as well 2.5 years later. I was 27 when that hit, that was brain switched my hand off.
Roll on to mid 30s and over the course of about 2 years I kept being admitted to hospital for random neurological symptoms including losing power of my legs, retrograde amnesia, falls, 3 concussions where I hadn’t a clue what happened, a temporary locked in which only lasted a couple of hours but because at that point I was mainly on MH meds and the nearest hospital didn’t have a neurologist much less one who could work out what was going on and kept getting psych consults who said it was medical but medical said it was psych and then the attack would pass and I was discharged back to GP and none of us really knew what was going on.
Until BAM, a “stroke” hit and as the local a&e was very busy the ambulance took me to the area hospital which is where it was named as HM I was seen by the consultant neurologist whose speciality within neurology is headache and migraine and when he had history and looked at the full picture was able to name it. We hoped it was a once off.
I was OK at home for about 24/36 hours and repeat, and got a couple of days in between for the next 5 months and then a big long attack which took 3.5 months and a month in hospital to break
It also was the start of a roller coaster began which I sadly still am on. Head pain didn’t enter the picture for another 2 years.
I've had every treatment that is suitable for me, intensive physio, and I'm a status migraine and refractory now. I never get out of the 4 stages of migraine even as I type my left side of body is hanging limp. - prodrome/aura / headache (but it's not always present) / postdrome (migraine hangover) before the whole ride starts again. I honestly want to get off this ride but don’t have a choice.
SHM in my case has ended me up in a coma once, with “locked in syndrome” like symptoms twice which ended me in HDU, it produces stroke and meningitis like symptoms but for years I was missing the headache and so the pieces weren’t put together
I've had lots of episodes of short-term being locked in my body and also had episodes where my eyesight goes to tunnel vision and then goes all together. My bladder/bowel / stomach switch off and don’t send signals like they are meant to, so intermittent gastroparesis, paralytic ileus and a neurogenic bladder. I've also have migraine associated vertigo (MAV) which can leave me seasick from lying flat but sitting up is worse and (AIWs) Alice in Wonderland syndrome.
There are 2 types of HM – familial and sporadic, I have sporadic as I have asked throughout my family and no one has had anything like it even going thru second cousins on both sides so as there is no family link, we haven’t tested to see if I have the gene and so named it as sporadic.
So back as a teenager, it was things switching off randomly, in this case, my brain so it looked like I was fainting to everyone including the medics as I was coming around within a minute or 2
Its most frequent pattern is showing some random symptoms in teenage years and showing its full self later on.
OP I hope you work out what is happening for your DS and that it can be sorted