Clinical Trial Finished!
It’s done, the clinical trial is over! Finally! I couldn’t be more happy about it!
I had to stay up in London for a few days – Monday to Thursday – for the final testing and while they sorted out my ideal setting for the moment. It was all very overwhelming, in all honesty, which is why I have procrastinated for a few days writing this post (it’s currently Monday, I came home on Thursday evening). So without further procrastination – here is my post on the end of the trial, hopes for the future and anything else that happens to pop in to my mind!
We arrived in London on Monday – the idea was that it would give us time to settle and relax a bit before seeing them on Tuesday. We checked in to the hotel and then decided to go for a little trip the the British Museum. I was a little nervous and quite twitchy so I took some extra Diazepam beforehand and we decided to go for it! The Ancient Egypt exhibit was amazing, however the museum was very crowded (by my standards) and by half way through our visit Holly was telling me to have some more Diazepam as my tics were worsening considerably. As usual I couldn’t see it – or was refusing to, I guess – but in the end I agreed to it and I’m actually quite glad I did. Just after the last mummy-room, I slammed backwards in my chair and a combination of slightly wet wheels and a particularly shiny marble floor resulted in the stabilisers on my wheelchair not working and I managed to tip it over. I banged my head pretty hard on the floor, possibly a few times after that due to tics, then managed to get my hands behind my head to cushion the blows a little while a museum security guard helped Holly get my chair back upright and get me back into it! After that we decided to leave the museum and head back to the Hotel – spending the rest of the evening chilling out and meeting a couple of friends in the hotel bar.
Tuesday was the last day of the trial. I had to go through the final round of testing, all of the usual stuff! Pages and pages of questions, testing for my memory, cognition etc and the usual set of two five minute videos – one with the person in the room and the other alone. I could swear that the videos are longer than five minutes! They make me feel so uncomfortable, it may sound very odd to say but the camera being pointed at me feels the same as being stared at and often makes me twitch slightly more than I otherwise would. Once that was over and done with the trial was basically over. They switched me on (or turned it up – depending on whether it was on or off in the first place, as previously mentioned in this blog I opted not to know) and unfortunately my tics got a lot worse and escalated in to a full blown attack. It was the worst I’d had in months, it was bad enough to damage the brand new footplate on my wheelchair!
To be absolutely honest I’m not sure what made it get so bad. I think it was a combination of anticipation and pent up anxiety as opposed to a direct effect caused by the stimulation. They fiddled around with it a little more and gave me a while to settle, in the end opting for a fairly satisfactory setting. To be honest I’m a little hazy about the rest of that day, it was very tiring and stressful! As far as I remember I stayed on that setting for the rest of the night and was fairly calm. I had a little bit of anxiety – but that had basically worn off by the morning, so I’m chalking that up to either a short term side effect or more likely psychological effect.
On Wednesday they decided to push the voltage up on that setting (as far as I remember in .2v increments). It worked really well, every time they pushed the setting up there was a notable calming effect on my tics! Unfortunately on the last adjustment (to be truthful I don’t know what voltage it is at right now, somewhere between 2.6v and 3.0v as far as I know) I didn’t react very well. I started to feel incredibly anxious and panic which had a direct knock on effect of my tics. It’s very hard to explain the exact sensations but here’s me having a go:
Suddenly rushing thoughts, very anxious and worried about random things that would pop in to my head (eg. what if x happens), ramping up of obsessive symptoms (eg. oh god, have I gotten myself infected with x) and a massive surge of that panic/anxious adrenaline. All of this had a knock on effect and started making my tics considerably worse.
I tried to deal with it for a few hours, but it pushed me to moderate attack level and kept me there for a good few hours! I ended up back at the hospital, where they turned it down a little and it seemed to ease. One of the Doctors’ thought was that it could have been that they pushed it up a little too fast and had to give my brain time to get used to the setting. (I may not be correct on this, but that is what I gathered from the conversation!)
After we went back to the hotel room that night things were much calmer! I was still ticcing, but nowhere near as much! Inside, alone, I was having I’d say around an 70-80% improvement in symptoms – outside (we went to Russel Square Gardens in the dark!) I was getting at least 50%, possibly more! It is admittedly hard to judge.
When we went in on Thursday for the final potential adjustment – they decided to leave it where it is for now. I have their number and email details – if anything happens I can contact them and they have said that they should be able to see me on a next-day basis, which is comforting! Also I have an appointment with them in early December for further adjustments – after hopefully they have given my brain time to settle in to it’s new situation! We also popped back to the British Museum before going home – the improvement in comparison to the days before was very, very promising! I’m still hyper-extending my back and still having the axial drops (those are the two most dangerous and damaging tics that keep me in the wheelchair) but not as much!
At this point I am getting a few possible side effects, but to be honest I’m not 100% sure on whether they are side effects or not – early days and all that, and in fairness even if they are they might settle – things do seem to be settling slightly. I’m not going to go in to them in this post, as it’s already at almost 1200 words! So I feel like maybe it’s time to wrap it up!
If you managed to read this far without falling asleep, I hope that it was informative! I will be continuing to post as although the trial is over, the treatment itself is now beginning! Hopefully soon I will be able to make these posts public!