Tuesday 26 June 2018

Video Telemetry

So I thought I'd do a blog post about video telemetry's and EEG's after my recent hospital stay. I did plan to write this whilst in hospital but I didn't get round to it and its a bit delayed as my recovery from being hospital has been slow and I've had a lot to deal with.

A video telemetery is a EEG which is also video taped and sometimes there's also a microphone too..

An EEG is a 'electroencephalogram'. Tiny metal discs are glued to the scalp and forehead; around 24 discs are applied. I also have two on my arms to record my heart rate and muscle activity due to my myoclonic seizures in my right arm.

In the video telemetry I was more-or-less constantly hooked up to the machine that and there is a camera above me. I had a little bag which all the wires on my head was pegged into and then from that box (pictured) there was a wired connected to a monitor which displayed the EEG readings. Each time I have any kind of seizure activity I have to press a button (pictured) that is almost like a bookmark on the recording and it also alerts the staff in the nurses bay so they could come an check up on me. I/the staff also had to keep a written record of my seizure activity. For the most part I was glued to my bed and the machine but I could have 15 minutes off the machine to allow me to say use the bathroom.

Each day the clinical neurophysiologist came to renew the tape and make sure the metal discs where all still intact and ask how I was getting on ask what seizure activity I'd had.

The purpose of scalp telemetry is to record on EEG (electroencephalogram) any spontaneous electrical activity of the brain. At the same time it aims to record any physical movements and sounds that may occur during your usual attacks, episodes or seizures. A wall mounted video camera; microphone and the EEG cabling are set up at the telemetry bed. We aim to record three or more of your usual attacks, episodes or seizures. The purpose of recording both the EEG and video is to establish if any electrical changes occur in the brain prior to or during any physical symptoms you may experience. The telemetry test can be helpful in:
  • Confirming a diagnosis of epilepsy or other conditions such as sleep and movement disorders.
  • Establish the epilepsy focus as part of the epilepsy surgery assessment process.
  • Recording exactly what occurs during the attack, episode or seizure.

The purpose of my 5 day admission for the video telemetry was to try and record as much seizure activity as possible both on the EEG and on the video and microphone to work out what is causing my seizures so my Professor can make a plan in terms of treatment and moving forwards with my care.

Once all the data has been collected it will then be reviewed and analysed and a report will be sent to my Professor.

I get the results of my video telemetry next week when I see Professor Edwards. I'm feeling quite anxious about the results and the knock-on effects of those results, such as prognosis. But I keep trying to stay in the moment and just hold out until my appointment on the 3rd July.


Friday 15 June 2018

St George's Hospital Admission - Day 5 - En Route and Home

Busy start to the day. Still having myoclonic spasms. Just finished packing my suitcase and making sure I haven't forgotten anything (which has brought up my normally low pulse and blood pressure to within an acceptable range). I'm now just resting with a coffee and a BBC documentary on the Suffragettes waiting for the Drs to come and do ward round as I have a few questions to ask and also for the neurophysiologist to come and take off my EEG wires. Once I've had them taken off the nursing assistant is going to take me to the bathroom for a wash (and hoping a hair wash!) and then transport is taking me home around 12pm.

So the neurophysiologist who's been looking after me this week came and some my head in a tone of acetone to take of the electrodes and also on the electrodes stuck to my forehead and arms. 

After that I headed off to the shower and had a nice hot shower and hair wash but I've got red sores of my arms and forehead from the acetone and electrodes so I feel a bit self conconcious of the bit red sore on the middle of my for head. Whist in the shower transport turned up early but they went off for coffee to give me time to finish getting showered, dressed and dried. It was all a bit of a mad rush from then on. The nursing assistant insisted on blow drying my hair to take off some of the dampness and then it was packing the last few things that I had out like my laptop and putting my lunch bag together and making up my water bottle and a coffee to go and taking my lunch time meds and ensuring I took my meds home with me (though I later realised that I left my oramorph behind) etc. I was getting a bit flustered and panicked wanting the ensure that I hadn't left anything behind.

It was then onto the stretcher and I was so glad that I brought a blanket and my pillow with me and a moment of fresh air for the first time since Monday before being loaded into the ambulance. The ambulance crew wanted to get off as soon as possible due to the long journey ahead.

As it was a different patient transport service taking me home I gave them the low-down on my seizures and where my emergency Stickman Communication © file was located etc and off we went! We took a pit stop as some services, not sure where in the country though and went to the loo and bought a coffee. The crew member sat in the back with me was nice. I listened to some music and slept most of the way home exhausted from the night before. 7 hrs later we arrived home! 

Once home I had (literally) a box of mail waiting for me, though some of it is birthday post and also in there was some beads from the 'Warrior Beads' project (which I need to sort out and will probably write a blog post all about at some point - so many blog ideas; not enough time or energy to type!)

I had tea when I got in and it was nice to eat something that wasn't jacket potato and salad! I then did some un packing but got tired so came and watched this morning's episode of 'Crimewatch Roadshow' in the sun room. And here I am now just typing this post and ready to head to bed.

I still had a ton of glue in my hair so tomorrow's task is to soak my hair in the hair treatment mask that I bought at the vegan festival as it's cocoanut oil based and the neurophysiologist suggested that I use oil to get rid of the glue. I also have the rest of my unpacking to to tomorrow and to order a new wash bag as the zip on mine has broken. I also need to sort out my meds tray as it all over the place from being used in hospital as one day they where using my own meds, then it was that they can't take medication out of pharmacy trays then back to using my own meds. 

Now for bed as I'm shattered!

Oh, when I released on the ambulance that I had left my oramorph behind I hoped it would have been delivered this week as I ordered it last week but it hadn't so I called them and they're going to deliver it on Monday so I'm just keeping my fingers and toes crossed that I won't need it over the weekend!

I've now migrated upstairs to bed and how lovely it is to be back in my own bedroom in the quiet, though I do miss my profiling bed and air mattress. Already I've noticed how much weaker I am from being in bed since Monday; only making the short trips to the bathroom. I can't yet manage the stairs and my legs keep buckling. Back to my physio exercises tomorrow but for now bed and sleep!

St. George's Hospital Admission - Day 4

1.45pm - 2.44pm

(quite tired and symptoms are flaring so it's taking me a while to the and I'm just typing in little chucks)

So far I've only had a cluster of myoclonic seizures and an absence seizure. I'm hoping I will have another tonic-conic seizure with a really strong aura as my one yesterday didn't have a strong aura and I want the EEG to see if there is the possibility that some of my seizures could be epileptic.

I expressed my worry to the neurophysiologist that's been coming and seeing me each morning that I was worried that not all my seizures will be captured on the EEG and them missing a possible epileptic seizure and it leading to a misdiagnosis i.e. all my seizures are non-epileptic. I think part of my thinking and I don't want this to be taken the wrong way, but with epilepsy there's medication and treatment and hope but with non-epileptic seizures there's just management and learning to live with them and at the way my FND and M.E. is at the moment I'm struggling to just get through the day some days and my seizures control my life. There's also the prejudice, especially at my local hospital and with my GP around non-epileptic seizure and functional conditions like FND and M.E. that is also worrying me. 

Thankfully I'm seeing my consultant Professor Edwards next month so hopefully he can look at my video telemetry and EEG results and put together a care plan and hopefully try and educate my GP and local hospital and ambulance trust a bit better on how to care for me and also sort out this palaver with the referral he made for me to go to Leeds for neuro rehab where they specialise in M.E. and FND.

For now I just continue to wait for the seizures to come and keep myself occupied in the meantime.

The hospital have been okay-isa with my dietary needs; getting me oat milk for my drinks but I am getting a bit bored of quorn sandwiches and plain salad every dinner time and a jacket potato with plain salad every tea time.

The colloquial language barrier between the north and south also confuses things a bit at medication time as I say 'dinner time meds' and to them that's evening meal meds not midday meds. 

I've way over packed on things like entertainment as I'm mostly making the most of my WiFi and my sticker-by-numbers book and I'm not getting through all the snacks i bought except the flavoured coffee sachets. 

At lunchtime I had a little wit of a wobble/meltdown and needed my lorazepam to calm me down. I think I was just getting a bit overwhelmed and anxious about the test results and diagnosis and 'time traveling' as they call it in DBT. The other patients on the ward where really amazing. Two came to me and gave me their contact details to stay in touch and helped me to calm down and telling me it was good and okay to get upset.

I'm hoping when the nursing assistant is free the take a little walk up an down the corridor as so far all i've down is go from my bed to the bathroom and back and my legs have been in a bit of spasm and weakness and pins and needles so I hope a little walk and stretch of my legs will help.

(Written Friday 15th0

Around lunchtime (5pm) my myoclonic spasms started, they eased and I was able to have my tea. I then just rested and watched TV Around 7.30pm I started getting more violent spasms in my arm and the nursing assistant put blankets rolled up around my arm as my shoulder kept dislocating/subluxing. Thing then spiralled and I stared have full body spams and I wasn't;t able to verbally communicate. I  was in agony and at one point I'd had enough of life and seizures apparently. My favourite nurse was one and was great comforting me and getting me comfortable getting me comfortable in bed. The on call Dr came (same one as before) but he didn't want to give me any medication for me seizures and spasms. By this point it was gone midnight. One my lovely nurse and a nursing assistant got me comfortable and settled in bed I just put on a film and nodded of eventually exhausted for all the hours spasming and my body going into full spam. 

Wednesday 13 June 2018

St George's Hospital Admission - Day 3


Good news! I'm going to be here until Friday, now the wait for me to have a tonic seizure or two or three.

Seen the neurophysiologist again briefly who gave me the news and she comes every day to restart to EEG tape.

Also seen the Dr in ward round and there's the possibility of putting a canna in me just in case I go into status seizures so they can give me IV Diazepam and other medications but so far that hasn't happened. My nurse yesterday made a request for me to have a cannula but the Dr on didn't want to unnecessarily cannulate me due to the risks like sepsis so I just need to wait and see if they'll cannulate me today or not. I've asked the charge nurse and he's going to chase it up.

So far today I've had a quick wash and got into my day clothes and watched some TV on my laptop and i'm starting to get into the routine of things.

The dietician always appears at the right time and she's getting me some more oat milk as I'm drinking plenty of coffee. I'm using some little flavoured coffee sachets that Mandy got me so thats a nice little treat.

Having an electric bed is amazing and it would be so great to have one at home, especially when I'm having my poorly days. The are mattress is also great and helping with my pain and keeping those pesky bed sores at bay.

I love having the student nurses to chat to and also o help them learn about my illnesses.

I've been quite tired today so this afternoon I've had a nap with some music.

I'm so glad that I've brough my ear defenders as it makes things a bit quieter and calmer for me and I've just been keeping my sunglasses on.


So I've had my first tonic-clonic seizure and they gave my buccal midazlolam. When I cam out the seizure I was in rigid spasm and I'm still in spam now; currently waiting for the Dr to come and see me. I got given some oramorph for the pain when I was more with it. Because I was in spasm I had to be fed but the student nurse and she was so lovely and I also needed the student nurse and nursing assistant had to use a slide sheet to move me up the bed. It was difficult as I felt like my illness took so much independence away from me. 

One of my favourite nurses is on tonight which is a bonus.

I've also developed a headache so I'm just in the process in being dispensed some co-codamol and see if that helps if not Sumatriptan to the rescue!

As well as the spasms which as super painful, not fun and annoying and difficult to do things like type and drink I'm also havingmore myoclonic seizures, probably from the pain.

I'd like to do my sticker by numbers book but my hands are a but uncooperative so I'm just watching some TV, 


Shattered and ready for sleep. Still is spasm and just had some more oramorph. My nurse is wonderful and very understanding of how much pain and how unfordable I am, especially after what the on call Dr said which I'll get to in the next sentence. 

So the on call Dr came and was understanding of how no nice my situation was but he didn't want to give me any medication like diazepam which may reduce my seizure activity which would hider the reason why I'm here which is to capture as many seizures as possible. He said give it a couple of hours and he'll come see me if there's no change. My nurse has helped me change position and is going to keep me topped up with pain relief like she's just given me the ira-morph just now and I'm hoping my night meds will also kick in and help too. I'm a little upset that the Dr didn't do anything or my spasms as it's my full body, painful and annoying and been over 4 hrs now but I can see where he's coming from.

My seizure earlier didn't;t have as strong an aura as I've had in the past so I'm hoping I'm might have one of those tomorrow or Friday.

Now for Stephen Fry to read me Harry Potter and try and sleep.

Tuesday 12 June 2018

St George's Hospital Admission - Day 2

The business of the day started around 8am. I step well and the air mattress is really comfortable and helping with my hip pain which is a bonus.

The pharmacist came as the nurses was querying about my dose tray as they don't know what's what in is and also where to store it as it has my zomorph (slow release morphine) tablets in it.

My nurse today has made my bed area seizure proof putting padding on the bed sides and clearing access so they can reach things like the code red button, suction, O2 etc.

The neurophysiologist has also come to see me and she's going to come and do a strobe light test at some point to see if there's any effect on my seizures and brain activity.

I've kept myself occupied with my blog, catch-up TV and a fab sticker-by-numbers book that I found on Amazon.

Just in the middle of typing this I've heard back from my nurse that this will be a 48hr video telemetry as they can;t find the paperwork that requested a 5 day admission so I'm feeling a bit down and disappointed as Professor Edwards wanted to capture a couple of tonic-clonic seizures and that's unlikely to happen in 48hrs and its taken 11 months to get this admission so it's possible that I may have to come back. The nurse said that she tried to fight my corner and I've asked to speak with the Drs to express my worries and need for a longer admission.

The staff continue to be amazing in meeting my needs and helping me out and often it's the small things like answering the call bell quickly and getting my meds to me on time and not waiting too long for pain relief etc.

I've just had a little meltdown getting upset over the change in the admission and my two nurses where lovely reassuring me and empathising with my situation.

3.40pm UPDATE

Seen the neurophysiologist and we did a strobe test and a deep breathing test but no seizures.

Still waiting to see the registrar to discuss how long I'll be here for. For now I'm just going to watch '24 hrs in Police Custody' and do some more sticker-by-numbers.

One of the chaplains also came to see me after I called them this morning and we had a brief chat and prayer and read a few verses of the bible which was comforting, especially as I have no visitors from home.

I had a slight wobble/meltdown as I would like to stay until Friday by which I'll hopefully have had 1 or 2 tonic-clonic seizures and I didn't want them to take the EEG wires off in the morning and have a less than 48 hr recording with no TC seizure for Professor Edwards to make a proper diagnosis and plan. The staff was very reassuring and empathetic and have been trying to fight my corner for me to stay and th neurophysiologist also said that she was me to stay for 5 days too. Part of the issue is the referral request for a 5 day admission can't be found so they're going on the referral request for a 48 hr video telemetry.


Professor Edwards, my neurologist, is going to come and see me to make the decision on how long I'll be here for. So far I haven't had any tonic-clonic seizures.

I've got stomach ache so currently curled up with my heat pad and my laptop.

With regards to transport rather than use transport from home I'll be taken home by the transport team here so I don't need to worry about them coming to pick me up tomorrow and having to go back home without me because it's been decided I'm stating in longer.

I'm feeling quite tired so I'm just waiting for my 10om meds and someone to help me into my pj's then I think I'll put on some Harry Potter and go to sleep.

Monday 11 June 2018

St. George's Hospital Admission - Day 1

So I'm here! I woke up at 5am and patient transport arrived around 6am. We had a pit stop at Peterborough Services for the loo and coffee and we got here around 1pm. Travel was a bit problematic as they forgot the stretcher so the transport crew set up a duvet on the floor of the ambulance and put my pillow there and got a blanket out. For part of the journey I traveled laid on the floor like this but they're going to ensure that I have a stretcher going home.

One of the first things that got done when i arrived was speak with the dietician who sorted out my dietary needs so now as I typed I have a nice flavoured coffee with oat milk and I've had a Naomi friendly tea.

Next was setting up the EEG wires which required a trip downstairs to neurophysiology so now i'm all plugged up and have a video camera watching me. I'll do a pot all about video telemetry tests and EEG's.

I've also been put on a air moving pressure relieving mattress as I'm glued to my bed and to prevent pressure sores as my skin is more fragile due to my hypermobility.

I've purchased wifi for essential sanity keeping and so I can keep up with my blogging and watch catch-up TV etc.

So far the staff have been great at meeting my needs and the bay I'm on isn't as noisy as I expected though I'm keeping my sunglasses on but thankfully they don't have florescent lighting.

I've also met with the Dr who went through my medication, medical history, list of diagnosis', neuro exam, heart and chest listen etc.

There's been a slight hiccup in the arrangements which has unsettled me a bit. I was told and expecting to be here until Friday but when I went to get my EEG wires fitted I was put down as only being here until Wednesday and another patient is due to be coming after me on Wednesday. They're going to check with Professor Edwards whether he wants me here longer but I'm worried that 48 hrs won't be long enough for me to record a tonic-clonic seizure and there's a possibility that I may need to come back again for another video telemetry admission so I'm really hoping that I will be staying for the 5 days but only time will tell. I'm trying not to worry too much and feel unsettled. I'll speak with Dad later and let him know how I am and the change in the plan. 

For now I'm going to make the most in my internet and watch some catch-up TV on my laptop and try and distract myself and keep myself in the hear and now and use my DBT skills.

Sunday 10 June 2018

All set and ready to go!

Last Tuesday (5th June) I got 'the call' that i'd been waiting for for almost a year. A call to saty that I would be admitted to St. Georges Hospital in London for my video telemetry test. That morning I'd called the Neurology Services Manager to say that I had an appointment with Professor Edwards at the beginning of July and I still hadn't had my video telemetry which I needed the result of for my appointment. He said leave with him and that afternoon I received a called from the Admissions co-ordinator to say that there had been a cancellation and could I come in last minute on Monday 11th. Not wanting to turn down the slot I agreed. I was all a bit made from that point. Cancelling next week's appointments, trying to find out when I'd be admitted so I can book patient transport, starting to pack my bags, asking on social media advice on what to pack for a planned hospital admission etc.

Well now I'm all packed and ready to go. I'm feeling VERY anxious for numerous reasons... I'm anxious about being in hospital after bad experiences being in hospital locally but I'm hoping that being on a specialist neurology ward will be better than my experiences of say being on an acute admissions ward; I'm anxious about being in a bay with other patients, again from previous bad experiences, I'm also worried about it flaring up my anxiety and M.E.; I'm worried in case i've forgotten to pick everything despite Mandy going though my suitcase with me; I'm not looking forward to the early start tomorrow; I'm not quite sure what to expect and I'm hoping that my clothing will be suitable as I have no button-up clothing as they suggested I bring; I'm anxious about catering for my dietary needs, though with Mandy working in hospital catering she keeps reassuring me that they will be able to find me something; I'm anxious about being away from home. So many anxieties. My care co-ordinator just told me to take things day by day and when I arrived explain then my care needs and wishes rather than keep calling them in my anxiety to make sure they are prepared for me. She also said that I can call her during the week if I'm needing some support which was nice and much appreciated. I've also typed up a care needs and wishes piece of paper to put in my file so whoever is looking after me can see it and be aware of what support I need so they can try and support me as best as possible to make the week as best as possible as to look at me its not always that obvious that I need help and support with certain things.

Mandy and I have gone through my luggage so hopefully I now have everything I need; just a few things left to pack in the morning like chargers and my pillow and I'm pretty sure I have plenty to keep me occupied. I feel like I've way over packed but I've got plenty of spares like extra t-shirts etc. And some thing like my food items will be gone by Friday.

I've called the ward and my bed is still free and I check about clothing and t-shirts should be fine and I'm allowed bedding so there wasn't;t need to take my onesie thank goodness as tat one less big item to take. I've also called patient transport who are going to pick me up around 6.25am (though I'm going to be ready for 6am) and my alarm is set for 5am (*fingers crossed* I wake up).

I'm going to pay for wi-fi as it see it as a sanity keeping essential so I'm planning on writing so blog posts such as what is a video telemetry test and keep you posted on how the week goes and do my One Second Every Day journal etc.