I’m about to go to bed, really happy because I will be seeing my son tomorrow.
As I take my Pjs out of the dryer, I remember I have been wearing the E4 again and I wonder if it captured anything.
I caught three wrong buses today, and I nearly missed an appointment at the dog groomer’s, so my first thought when I saw the 172 HR peak was that it must have been during the stressful period (‘Am I ever going to make it to that 4pm appointment?’ ) this afternoon.
Ignore the red line on the trace near 4pm. I was just fiddling with my coat sleeve and accidentally pressed the button.
You can clearly see how stressed I am as I struggle to make the appointment, getting lost between 3.30 and 5 (look at the EDA)
Ha ha! My EDA goes through the roof because I am both hot and stressed: over 11, LOL)
it turns out that the 172 HR peak isnt anywhere near this point in time.
I look in a bit further, expecting to see a massive change in the accelerometer as an artefact sign, but I don’t see that either.
close up of the Empatica E4 trace, showing HR jumping to 172 bp in 5 seconds.
I don’t have much time to look at this, I need to sleep as well as I can this evening. But I’m wondering, where was I at 7.26pm and what was I doing?
Drat. I can’t use Life360 to find out, because my phone ran out of power. But I remember catching the 1903 bus (there was only 1 per hour), and then another, and the timetables suggest the bus gets to the stop near my home some time near 1930.
Looking at the wider view the accelerometer traces appear to show me getting off the bus at 1932. So it was 6 minutes before I climbed off the second bus.
Then I remember: the bus took an unusual route from the station to Sandgate Road, and for one horrible moment, I thought I had caught the fourth wrong bus of the day. Getting the wrong bus means a huge amount of pain when my joints are subluxed, and one or more of my knees or ilia are usually in the wrong place. Getting the wrong bus could mean a fall, a full dislocation and not being able to get up again. It is a big deal. And at this point, because I had walked so far due to the other wrong buses, so many joints were subluxed that I could barely stand.
So at this point, the fact that the bus started going the wrong way – it was a potential nightmare. The HR jump to 172 bpm is when I had a bit of a panic. Not long after eating.
Odd to think that my heart rate jumped from 87 bpm to 172 bpm in just 5 seconds, and yet I didn’t feel it at all. But I do remember feeling pretty awful after I climbed off the bus just a few minutes later. I thought I was going to fall over again and I staggered around a bit.
This is the ‘feeling pretty awful’ chunk of time – only about 30 seconds of it. The E4 is pretty amazing to be able to see the individual beats like this:
So yes. That’s me staggering about a few minutes after getting up out of my seat and climbing off the bus, a few minutes after a 172bpm panic.
There is a another fast jump later in the evening at 21.12 – HR goes from 75bpm to 137bpm in 20 seconds. After I had eaten again (sioc).
Not much to report, Cap’n
OK so I don’t know if any of this means anything. The few things that I am suspecting so far:
In other news
I’m really excited about the fact that I managed to pop both ilia back in *on my own!* last night. The back pain was really bad, so I watched (another) YouTube video about how to put your subluxed sacroiliac joints back in the right place, this time involving a stick, a pilates band and a ball. I followed the instructions a few times and there were four loud pops, two each on each side of my pelvis, and the pain was gone. I could feel each pop, too.
Its significant, not only because putting your pelvis back together reduces pain (a lot!) but also because I need my ilia to be aligned for strengthening exercises (otherwise I am building up muscle in the ‘joints out’ position, which isnt good). To date, my problem has been that my ilia are so unstable, even if a physiotherapist professionally adjusts them back into the right place, they only stay ‘fixed’ for 45 minutes – basically as soon as I sit down, they crack open again and the pain/wobbling is back.
But strengthening up is my only hope. So the only way I can stop the pain is if I can successfully realign my pelvis frequently enough to do the exercises in the Muldowery protocol (see the book in my shop). As yet my success has been mixed to say the least. But this may be because I have been assuming it is only my right ilium that keeps dislocating.
But yesterday, both ilia popped very loudly. This tells me that the pain isnt from single upslip: its double upslip (which happens a lot in Ehlers Danlos people). So I need to keep both ilia in check whilst I try to strengthen up.
Ending with a freshly-groomed doggie picture.
A great blog post from Sugru, explaining how to make an iPad stand from an old anglepoise lamp. I’d like to make one for my profiling bed, to use instead of the network of string held between two monkey bars!
This post isn’t written well. I visited a family member yesterday, and because of that, today I can’t move.
It’s 2pm and I’m hungry, but I’m too fatigued to get up to eat or make a cup of tea. The pain was so bad when I woke, I had to pull myself up using the monkey bars that hang over my hospital bed.
Yes, I have a profiling bed at home to manage pain. This is my normal.
After a few hours, I write this for the broadcasters at ‘MoneyBox Live’:
“If you’re a disabled person wanting to work at home, the news isn’t good. The new Working Tax Credit rules (Tax Credit Statutory Instrument 605) have affected disabled people’s eligibility for Working Tax Credits. If you’re on a low income; working at a slower pace; working on certain types of activities; then what you’re doing may no longer qualify as ‘work’.
Yes, you heard that right. The Government has quietly redefined the activities that are ‘bone fide’ work in the eyes of the law. But only if you’re poor.
Because of this legislation, if you’re not bringing in much money, then HMRC will ask themselves if you are working ‘on a commercial basis’ and make you ineligible for Tax Credits if they think you’re not.
Their guidelines even say ‘the business activity is not likely to be considered commercial’ if someone could think of it as a hobby (who gets to decide if hairdressing is a business or hobby? Or Care work? Is that ‘commercial’?). Why, HMRC, of course.
If your work is a craft of some kind but it doesnt bring in very much money, it isn’t work. Even if you need to do it – or something like it – to help you deal with your pain. If you’re on a low income, advocacy isn’t considered ‘work’ (even if it is the best use of your experience and knowledge), because HMRC define it as ‘non-commercial’. Indeed, disabled people are no longer eligible for Tax Credits if they work in any activity that does not bring in more money than a particular threshold, no matter how slowly their disability requires them to work.
This is because HMRC created a minimum income threshold by assuming that any self-employed earner can work as fast as an able-bodied PAYE worker on minimum wage. A disabled person living with a number of conditions might well work slower than that non-disabled person. But if the slower worker doesn’t achieve the same income, they’ll lose their Tax Credits (see Tax Credit Statutory Instrument 605.)
Of course, not all disabled people work slowly, or on non-commercial activities.
But many do. In which case, do we want to have a discriminatory in-work support system which doesn’t allow disabled people to work slowly; to work for health; to work for inclusion; to work for society at large? When every Government health or social policy statement emphasizes how bad that would be for individuals, the health system and society?
It is important that disabled people do not just work for profit. We need work to participate in life instead of being locked away on our own; we need to do whatever we can to stay healthy; it helps is if we can work to help ourselves or others. Some of us have to work just to stay alive; to keep the physical pain at a manageable level; to have some hope; to have some contact with the outside world.
Many years ago, I could read a research paper in 15 minutes and write an article about it in under an hour. But now, just the reading will take all day, or many days, and there’s no telling whether any particular day will be spent functioning quite well, or in agony. And what organisation would give me me a PAYE job to write these words about disabled self-employment whilst I am lying here, whimpering in bed? And without being able to predict whether I will finish it this afternoon, or in two weeks’ time?
But all across the country, there are other disabled people, trying to be self-employed, working slowly, or working on a craft to give life some meaning; or working in advocacy to help others. Under the new rules, if they don’t earn enough, it won’t be classed as ‘work’ any more as far as the Tax Credit system is concerned. To my knowledge, no-one in paid policymaking, nor paid in-house journalism has written about this yet.
Just because people in rich or powerful organisations do not value a piece of work, that doesn’t mean it is not valuable to society as a whole. And if a person needs to work to improve their health -instead of increasing their uptake of painkillers, or becoming obese, for example – then why put these barriers in front of them? Why remove an income top-up, just because a particular disabled person can’t work as fast as an able-bodied one?
The new Tax Credit rules will disproportionately impact disabled people. As Philip Connolly, Policy Development Manager for Disability Rights UK says: “There are proportionally more disabled people working for themselves than non-disabled people. If the numbers were to decline to parity then the disability employment gap would rise from 32% to 40%.”
HMRC has created a discriminatory system that actively discourages work that is flexible enough to accommodate many disabled people’s needs.
And yet all the while, the Government, to much fanfare, says it is developing shiny new policy on Disabled People and Employment.
But if the Government wants to help disabled people into work, it should first stop discriminating against us when it makes up the rules on self-employment. It should also stop the endless, exhausting cycle of welfare inquisition which ignores the testimony of doctors, creates suffering and costs more to run than it saves.
Our work has many ends. It is important work, whether or not it is ‘commercial’. The Government must drop these discriminatory rules. Otherwise we will all know: the White Paper on Disability and Employment is a whitewash to distract from cuts and sanctions that are killing disabled people.
Why else would they discriminate against us in self-employment and still pretend they want to help us be employed?”
I wonder if I can stand long enough to make some porridge.
This morning was a bit of a write-off. I woke up in so much pain, I couldn’t move.
I kept trying to get up, but after a while, I realised there was nothing to be done: I was paying for yesterday’s exertions getting to London. I’m usually floored for a day or two afterwards. Maybe I should just rest a bit, I thought.
Here’s my E4 data for the day, which I didnt look at until 4.40pmish. Nothing much happening for most of the morning really, although the EDA is a bit high. You can’t take much notice of most of the smooth heart rate data, as it is influenced by movement artefacts. I haven’t figured out what the zip file download does with this as yet.
At about noon, I started researching solutions to a medtech application in bed and was happy enough – if tired – to take a PJ Brussels selfie with my phone at 15.03.
But I ought to have remembered that Brussels tends to sit right on top of me shortly before I get ill.
A couple of hours later, I felt quite peculiar and experienced the “chunk/altered level” sensation that I used to get a few moments before getting the jerky movements. I always attributed the jerks to either SSRIs or spinal myoclonus. Dr R thinks they are dissociative. But strangely, although I felt really odd, this time I didn’t get the jerks.
I concentrated to press the E4 red button and thought, hey my face feels a bit weird. Perhaps because I had been taking selfies and had my phone close by, I tried to look in the camera to see if my face was lopsided again (it has been showing up a bit lopsided in selfies when I am really not very well).
I couldn’t quite work out whether it was or not. Was my mouth a bit lopsided?
That gave me the idea to take a video (15.06). It took four attempts to start recording because I wasn’t quite with it, and looking at it now, I see I spend rather a long time turning the camera, looking at my mouth which seems lopsided.
The second picture is from 13 October, 7.08pm. Yes, I look dreadful. The pain had been excruciating for days.
Counting to 10 was a bit slow, and I stumbled with the alphabet for a bit before getting back to normal functioning at M. There’s lots of frowning after that, but that’s not struggling, that’s me mentally trying to compare my current performance with what came before. Looking at the recording, which is only 2 minutes long, it seems to me that ‘one, three, b, f, and g’ are slightly off. Which probably takes me up to 12.07 ish.
Looking at the E4 data above, which is a bit unusual – apart from the EDA being slightly elevated (not really though), is that although there is a fair bit of movement during this period- as I am taking selfies and fumbling with my phone – the heart rate is lower rather than higher. Normally it jumps about at the high end when I am moving. But maybe thats just what artefacts do when I am in bed. Garbage in, garbage out.
Looking at it in closer detail, I am not so sure.
Normal looks different. This is the sort of BVP trace that I’d expect: relatively uniform but with some artefact-related BVP variations:
And yet this is what is happening when I felt peculiar. The aberration only lasts between 5 or 10 seconds.
I wonder what this is. But it during this period that I feel strange, and immediately after this that my face feels lopsided and I have more difficulty speaking than usual.
I have a look at the rest of the morning. The EDA trace is a signpost to look closer at the data.
There’s a peak of 4.9 at 11.54. Not much there. A little reduced amplitude wobbling. Meh.
But this, at 14.44. BVP amplitude 77 – and again, it is not corresponding to a movement artefact, and it is preceded/followed by lots of wobbly changes in the EDA.
No clear idea of what this means. I wonder if the temperature at 12.40 was accurate?
Worked too long on the medtech stuff in the evening. I tend to focus on things quite deeply and have difficulty stopping something once I start it.
But now it is way too late and I just had trouble spelling ‘unusual’. Which means I really should go to bed!
Appointments at The Maudsley today.
With N we discussed plans to be more methodical about recording seizures and medication. I suggested I should use the two technological solutions that I have been working on, which provides another motivation to finish them.
Dr R was pleased I had re-started Lamotrigine a few months ago, and recommended I up my dose by 25mg. When I arrived home I realised I had made a mistake in relating my doseage: I have been taking 100mg, not 40. Decided to up the dose by one tablet this evening anyway, since I had missed a few and we had discussed therapeutic doses as being much higher. On reflection, I should stick with his advice of 25mg as he emphasised the word ‘slowly’. It means breaking the tablets in half, but no matter.
When I talked about work, he said the main thing was to concentrate on getting better and reducing the seizures. We didnt discuss SUDEP and deterioration but I guess that’s a factor. Writing this down in my blog helps me to remember this and overcome the guilt about work being slow.
At the end, we talked about all the things I am doing to try to improve my quality of life and reduce the seizures. “You’re the one actually doing this, you know” he said. “You’re the one who should take the credit”. I was a little stunned.
It sank in after I left his office, and I had a little cry in the waiting room – just a few seconds – a little emotional about having my struggle and achievements recognised. It doesnt happen very often.
I was so happy about, I told Mum about it when I rang her to wish her a happy birthday again. The view from Blackfriars when I changed trains was also inspiring.
But the pain got a bit much by the time I reached St Pancras again, and it was then that I noticed a bit of sensory overload; I became unable to focus on anything, and all the people moving around me in the station seemed fuzzy as a shoal of fish. Then my legs started going up and down too much to walk properly (I had been doing so well before, too) and just before a rubbish train started beeping me to get out of the way, I had become transfixed and confused – outside John Lewis as it turned out. People noticed and asked me if I was alright, and I could hear them but it was difficult to answer, my words didn’t come out very well.
My words started getting better a bit later. Thats when I realised someone had put a stool for me to sit on, and I was outside John Lewis. I thanked the people for helping me, and wobbled off, glad for the Taga to hold on to.
Was it a dissociative seizure or an epileptic one? I had forgotten to put on my Empatica E4 in the morning rush, so I can’t really tell.
Tricycling home, my patella subluxed, but after getting off and hobbling, and cycling a little bit further on the flat, it went back in, thank goodness.
Little Brussels was pleased to see me when I got home.
I often put the E4 on as I am going to bed. But I fall asleep *really* fast, so it is rare for me to have a seizure as I am sliding into sleep.
But this time, the seizure woke me up.
Just as I was drifting off to sleep, I woke up with that uneasy feeling that comes before a focal seizure, followed by the intense, familiar and ominous chain-of-thought that I can never remember after it has happened.
The feeling afterwards is not pleasant.
You can see some EDA peaks and troughs before the seizure – not terribly big in amplitude, but focal seizures have smaller magnitude EDA changes than grand mal seizures [Poh 2011;p115].
Looking in a bit closer, I see the BVP pulsing every 7 seconds or so in the period leading up to the seizure (starts 23.50), accompanies by EDA changes. I dont know enough about BVP yet to say whether this just happens all the time…. I think about my hunch that the artery squeezed between my medulla oblongata and low-lying cerebellar tonsils is causing seizures (see scans and research paper below). I wonder if this pulsing BVP is related? But then again, maybe this pulsing is just a normal pattern.
The phenomenon of herniated cerebellar tonsils causing both scoliosis and epilepsy has been described in the literature by Narasimhan et al (10.13070/rs.en.1.818). In the case study described, the authors say: “It is debatable that if left untreated, the natural history of scoliosis would have inevitably lead to curve progression, disability from back pain, cardiopulmonary problems and psychosocial concerns.” Elsewhere more controversial research has suggested that in patients with collagen disorders, the cause of progressively worsening Chiari can be filum syndrome due to occult tethered cord. See (10.1007/s00701-005-0482-y)
The two scans above, taken 4 years apart, appear to show the cerebellar tonsils descending lower into – or towards – the foramen magnum.
Although the EEG report from 2011 says ‘epilepsy proven on telemetry’, the fact that my symptoms were judged to be ‘MRI negative’ has caused a lot of umming and ahhing over the years. However I dont think the radiologist looked at my MRI very carefully. The hippocampus appears in just two slices (I think) but to me, the second slice clearly shows one of the signs of mesial temporal scleroris: a relatively hyperintense signal on one of the hippocampi in the FLAIR image (click image to make it larger):
and possible asymmetry, both of which is are indicators of mesial temporal sclerosis associated with temporal lobe epilepsy. (10.1007/s00234-014-1397-0)
I reflect on the likely CSF path given the asymmetrical CSF flow implied above in my case.
See research paper by Urbach et al (014): “Is the type and extent of mesial temporal sclerosis measureable?”
I look back into the E4 data. I wonder if there is anything more to see where movement artefacts are at a minimum.
This snapshot of the data, taken closer in, shows a great deal of artefact at first, but something odd happening at the time I pressed the E4 button.
I look closer in.
Um, is that my BVP amplitude dropping to zero for 2 or 3 seconds?
Next stop: I’ll be reading Garbage in, Garbage Out: Identify Blood Volume Pulse (BVP) Artifacts Before Analyzing and Interpreting BVP, Blood Volume Pulse Amplitude, and Heart Rate/Respiratory Sinus Arrhythmia Data by Peper et al (2010) (10.5298/1081-5937-38.1.19)
A couple of years ago, I was knocked down (again) by a car whilst I was ‘frozen’ in the middle of the road during a focal seizure. That was the day I decided that enough was enough: I was going to have to take control and do something about it. So I invented the Seizure Alert Cane.
Basically it is just a normal disabled cane that is coloured differently. It is white, to signify the disability, and purple at the end, for epilepsy. When you’re holding it, and acting strangely, it is easier for people around you to understand that there is a medical condition affecting you; they are less likely to assume that you are staggering or standing still because you are obstinate or drunk. Unlike a plain medical ID bracelet, it can also be seen from a distance: by car drivers, for example (Why not use both?).
The full description and why it is needed, read the patent application document from 31 July 2014. I published the idea in the patent journal to ‘claim’ the idea as an inventor, but not the patent or rights. It is released on a Creative Commons Non-Commercial License.
If you have frequent seizures, and you want people to know you have epilepsy, it might be something to think about. If you have less frequent seizures, you probably won’t be interested. Well, I wouldn’t be. (Think of this as for the poor folks who have lots).
These days I am very unsteady on my feet as well. So I have painted my walking stick white and purple. If you have no mobility problems (like me, 3 years ago, when I invented this) then a small fold-up white-and-purple cane in your pocket might be just the ticket. Take it out when you feel an aura coming on to give bystanders a visual sign that you are not drunk. Even if you can’t talk because you are in a seizure – or coming out of one – you can let the cane do the talking for you.
Watch this space for the smart gadget version!
Please do share this post to raise awareness of the device. The more people who recognise the white-and-purple cane, the more people with epilepsy can be protected from harm. Drivers and passers-by do not recognise all seizure types. Let’s use technology – a very simple technology – to change that.
@epilepsytech on Twitter