On Thursday or Friday, I received a copy of the letter sent by Dr A (my Consultant Neurologist) to my GP confirming details of the counter-attack against my seizures. The term “Jacksonian March” was used to describe the pattern that my seizures follow, starting from my toes and working their way up to my head. I was quite taken with the term and (naturally) immediately Googled it to find out more.
I had already categorised the different levels of current seizure activity into broad categories of Meizure, Inbetweeizure and Doozie. This week has brought a new type, which I felt didn’t fall into the existing categories. So, as the OCD daughter of an industrial chemist might be expected to do with the discovery of a new element of seizure activity, I’ve categorised them into a Seiziodic Table.
Fear not, as and when any new seizure activities are confirmed, I will add to this Seiziodic Table.
The Long March from Toe to Top
The following is the escalating seizure March. The order doesn’t change but General Jackson unpredictably mixes things up a bit to keep things interesting. The time spent on each March manoeuvre (and on each element within a manoeuvre) is slightly different each time and the Seizuretroopers sometimes thankfully retreat without Marching on to the next stage.
The Seiziodic Table
This is a feeling that a seizure might be about to happen. The feeling can be any one (or a combination) of the following: (1) overheating in my cheeks and around my face and neck area; (2) feeling a “switch” turning on in my brain; (3) a change in sensation down my right wing (or part of it); (4) a sudden feeling of tiredness; (5) a sudden thirst; and, (6) a twitch or two in my toes.
There is no pain or discomfort in these early throes of the March. Happily, if the seizure troops withdraw in an ignominious defeat at this stage (as has been the case several times this week), there are no discernible effects on my mobility.
Mini-Me Seizure/Meizure (Mz)
The flickers in my toes move on up to my foot, calf and thigh. In my foot and calf, I experience twitches, contortions, spasms and shakes. More often than not, a Meizure comes with a sensation that is similar to the numb/tingling stage of pins and needles (uncomfortable but painless and weird). My thigh is usually only affected by the numb/tingly sensation but it sometimes spasms and shakes a bit too.
Importantly, there is no pain nor is there any Dr Strangelove lifting and jerking on my Nazi Wing.
Mobility and strength in my foot and lower leg is noticeably affected for up to an hour or so afterwards. Recently, I have usually been able to stand up and walk (with light support from one of my live-in carers) within 10 minutes, albeit that I’m not walking as “smoothly” or “steadily” as usual.
The Inbetweeizure builds on the features of a Meizure. It goes no higher than my thigh, like a Meizure, but has some Mini-Dr Strangelove Nazification. It involves involuntary foot and leg lifts, contorting and jerking with the start of some cramping and contracting pain in my foot and calf. The Dr Strangelove part of the Inbetweeizure is uncomfortable and mildly painful.
The effects on my strength and mobility are the same as a Meizure but recovery typically takes a little bit longer.
Snoozie Doozie (Sn)
A new sub-category of seizure as of Saturday evening that didn’t fit neatly into an existing category. It is similar to an Inbetweeizure in that it involves all the features of a Meizure with some bonus features. There are me Mini-Dr Strangelove Nazification lifts, contorting and jerking, but without the mild pain and cramping of the Inbetweeizure.
From a pain perspective, it is therefore at a lower level than an Inbetweeizure. However, General Jackson and the Marching Band(its) continued up into my stomach (although no higher). From a Toe to Top escalation classification perspective, that’s why it is higher in the Seiziodic Table than an Inbetweeizure. I’ve never before had a seizure that reached my stomach that didn’t turn into a Doozie. A change is good as a rest so they say….
The lack of pain and cramping makes it less of an issue during the seizure than an Inbetweeizure. The temporary loss of strength and mobility in my foot and lower leg appeared to be broadly the same as that of an Inbetweeizure, with a similar recovery time too.
[Competition Time: Nomenclature
I’m thinking of calling this type of seizure a Lazy or Loser Doozie (Loozie (Lz)) or Aborted or Abandoned Doozie (Aboozie (Az)) but haven’t yet decided. Any suggestions?]
[UPDATE as at 17 January 2017: Sarah Muller won with the suggested name!]
The Jacksonian Marching Bandits successfully reach the summit. Cramping in my foot and calf is very painful and is simultaneously accompanied by Dr Strangelove lifting, contorting and jerking in my foot and calf. It continues up to the right side of my stomach and chest, with added shoulder, neck and head jerking, usually splitting off into my arm too, although recently it hasn’t gone down past my elbow.
The cramping, lifting and jerking in my foot and leg is a relatively short part of the whole “experience” but is the most painful bit and can often make me clench and call out in pain. An equally uncomfortable feeling during a Doozie is when the March reaches my stomach and chest and head, where the seizing is happening on my right side but not my left side. The difference between the left and right sides makes me feel like I’m being pulled in different directions and I can’t seem to get comfortable. My attempts to straighten up and make myself move as one again are possibly counterproductive as it seems at times like I’m fighting against the Doozie in a way that makes the discomfort worse.
A Doozie can also affect my speech, with my thoughts coming out in a jumble of incoherent sounds rather than the words that I articulated in my brain. Thankfully, this effect on my speech hasn’t occurred since I was in hospital in October/November. (Has anyone checked whether or not Trump is afflicted by seizures as that might explain the verbal diarrhoea that comes out of his mouth?)
After a Doozie, I lose most, if not all, of my foot and ankle movement, with my foot flopping limply without any apparent connection to the rest of my body or brain. Immediately after a Doozie, I can’t bear any weight on my right side and rely exclusively on my support team to move me.
As the frequency of the Doozies has reduced, my recovery time has quickened. Even a few weeks ago, it was a few hours before I could successfully make even a moderately-supported walk. More recently, I have been able to put some weight and movement on my foot (with moderate support from my support team) within 30 or 40 minutes, with the need for even mild support usually abating within a further hour or so. After two or three hours, my mobility is therefore generally back to where it was pre-Doozie.
Super Doozie (Sd)
This was what I described in my first post, which brought the Squatter out of the closet. The full Toe to Top treatment but instead of a Jacksonian March, it was like the D-Day landings with a simultaneous all-out multi-site attack. It was a sudden seizure with the instantaneous loss of voluntary movement in all limbs: jerking, spasms, seizing and involuntary sounds. Ironically, the Super Doozies are pain-free in themselves and only hurt if one or more limbs affected are injured in the course of jerking.
After the Super Doozie, my speech returned immediately but I was floppy and unable to move the right-hand limbs affected until it gradually recovered somewhat throughout the day. Mobility and strength have never recovered fully in my foot and lower leg. In my arm, my mobility has recovered but my strength is perceptively (to me at least) weaker than it was.
Super Doozie Tsunami (Tz)
This involved multiple and consecutive Super Doozies, as described in Still Got It. General Jackson launched wave after wave of attacks, with very little time in between (initially just seconds, which the doctors, with the use of sedatives and other drugs, managed to extend to 20-30 minutes within half a day or so).
The ongoing Seizure Tsunami meant that I had no recovery of any mobility or strength until a couple of days after the worst of the waves. It then took a good few weeks to get back to the new normal mobility and strength that I had regained post-Super Doozie.