ElectricZebra

medtech in everyday life

Blackfriars

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.

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.

I felt 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.

 

 

catching a temporal lobe seizure on the Empatica E4?

I sometimes put the Empatica E4 on as I am going to bed. It is a medical-grade research device which measures BVP, skin conductance (EDA), temperature and movement (accelerometer).

This image shows the real-time output. You can see the level of detail we are talking about by looking at the time stamps.

But unless I am in a lot of pain, I fall asleep *really* fast. 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, not very nice feeling that comes before a focal seizure. The TLE seizures have a similar, deeply-famliar middle, that I can never remember once I am out if it. By the end the feeling is not pleasant. Near the end I swallow, run into a corner (???), run (or hobble) away, swallow a lot and sometimes throw up. Last week, after we watched a video (‘I don’t do that’, I said) my mum said that actually, she had seen me smack my lips a long time ago. This really surprised me. I’ve told every neurologist I have ever had that I don’t do that, I just swallow, retch and maybe throw up. Apparently I do smack my lips after all.

This time I ran into the lounge, petrified.

Here’s the ‘wide’ view of the data as stored in the cloud. (You can keep zooming in to see more detail). The seizure happened at 11.58 on the 9th of Feb 2017. I am writing this post some days later. (Click for larger image).

I’ve written about the MIT research on EDA and seizures before.  Focal seizures have smaller magnitude EDA changes than grand mal seizures [Poh 2011;p115]. You can see some EDA peaks and troughs in this data before the seizure – not terribly big in amplitude, but as I said, the MIT research says that focal seizure EDA changes are smaller. I’m not convinced my data are significant, but I decide to look deeper in at the time around the seizure. Luckily with the E4, you can magnify right down to individual beats.

So, looking in a bit closer (below), I see the BVP pulsing every 7 seconds or so in the period leading up (23.50, 23.53), to the seizure (red line pressed shortly after but before I ran into the lounge) and this BVP pulsing is accompanied 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 associated with both scoliosis and epilepsy has been described in the literature by Narasimhan et al (10.13070/rs.en.1.818) and others. 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.’

The two scans above, taken 4 years apart, [as I went from doing active voluntary work (despite being in pain) to struggling to function with completely disabling pain], appear to show the cerebellar tonsils descending lower into/through the foramen magnum. (The herniations are so thin, they don’t show up on the McRae line, but US doctors don’t use this any more anyway). The thin herniations can be seen this on the 3D image here:

2015 brain dark fluid slower

[More recently I’ve been wondering, in the case of hypermobile people with Chiari/herniated tonsils all closely packed around the medulla, what happens when a person is afraid and crouches/hunches up their shoulders into their neck (as many of us do when we are afraid)? If a hypermobile cervical spine moves so much more? Are cerebellar seizures more sensitive to loud noises or stress?]

Although the EEG report from 2011 says ‘Epilepsy proven on telemetry’ [Right at the very end!! In the postscript after the signature! No wonder I missed it for years!], 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. Herniated tonsils are not the only sign. The hippocampus appears in just two slices (I think?) but to me, the second slice  appears to show one of the signs of mesial temporal sclerosis: 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 can be indicators of MTS /temporal lobe epilepsy. (10.1007/s00234-014-1397-0)

(doi.org/10.3988/jcn.2008.4.1.1) See also International League Against Epilepsy Classification.

[See also 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 in the data, where movement artefacts are at a minimum?

This snapshot of the data at the same time, taken much 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? I look closer in again.

Next stop: I’ll be reading ‘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)

The link to the data in the cloud is here. If you’re in a hospital/research unit somewhere, I can share the data with you if you like. E4 worn on left arm.

*

 

 

 

 

 

 

 

Bibliography

Injured by cars or passers-by again? Try a Seizure-Alert Cane

patent pic colour

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