Day three of me starting to reduce my diazepam dose. I am only reducing my dose by 2.5mg out of 10mg per day (so currently on 7.5mg for two weeks). This is following the instruction of my specialist in London.
So far, every day has been different. I will be trying to update it every couple of days to keep track of it the withdrawal.
Day 1: Nothing major, some odd dips in mood and headaches etc – ordinary for when I miss a dose, anyway.
Day 2: I felt like death, all day. Sweating profusely, often feeling hot and cold at the same time. Made note to self to drink more fluid throughout this process, in case this becomes a regular thing. Mood pinging between happy and sad constantly. It all comes in waves – one moment I am fine, the next I feel like the room is moving (seasick-type feeling) and things are morphing in my vision a little bit. Tinnitus is also quite annoying.
Day 3: Wish me luck.
I know that I have been very quiet and not posted to this blog for some time – there has been a lot going on!
Firstly I am now a father – my daughter is the most amazing mini-human in the world to me. She looks so much like her mum that it scares me a little bit sometimes. This has not only been one of the most exciting things that has ever happened to me, it has also been one of the most stressful and testing things – because, you know, parenthood is supposed to be walk in the park. </sarcasm> For obvious reasons, I’m not putting her name or any personal data about her on here – but I am going to share this picture, taken shortly after her birth! 🙂
Whereas becoming a father was sort of expected and had quite a long leadup – I couldn’t post to this blog without mentioning it!
So, back to the subject of unexpected happenings – the most surprising thing that has happened in the time between now and my last post to this blog is just as life-changing. It took several years of hit and miss and finally a “happy accident” damaging some of the implanted DBS equipment a tiny bit – but I am basically tic free for the first time in my memory!
A bit more in depth information behind this – and something that I’m not sure if I have written about before was the reaction that I had to one of the contacts in the post-op screening. The screening involved them running a wide range of settings through every electrode and observing the immediate effects. One contact in particular gave me a slight reduction in tics, but the first time that they ran a high current through it – it caused an immediate fight or flight type of response. I had to rush to the toilet and then started to shake quite violently until they turned it back off. This was reproduced again to a lesser degree in a blinded test (during the week that I spent in London after they switched it on) on a lower setting.
So that contact was left alone and eventually a combination (the top two on either side) was found that seemed to have at least some impact on my tics. However the impact was fairly minimal in terms of actually improving my ability to function. Then, at some point between the battery starting to run flat a few years sooner than expected and having to be replaced with a rechargable one, that minimal impact disappeared and things started to get considerably worse again.
Then roll on January this year. It was discovered that the top contact on one side had increasingly high impedance. (See atrocious MS Paint diagram no. 1 above) What this means is that one of the tiny wires inside the cable that runs up the side of my neck has fractured or become otherwise damaged. As an experiment they decided to move the stimulation down on one side but leave it unchanged on the other (see atrocious MS Paint diagram no. 2 below for a bit of clarification on this).
What I didn’t realise was that this meant activating the contact that had caused the horrible reactions before. It is an almost impossible type of dread to explain, possibly because it originates from a bit of metal inside my brain – but the closest that I can get to it in text is as follows: Imagine a vertical drop rollercoaster/fairground ride. For this example I will use Oblivion at Alton Towers – combine a constant stream of that surge of adrenaline the first time that you drop on that with a feeling of dread sitting like a ball of lead in your stomach and that should get you most of the way there. (Scratch that… easier than I thought to explain the basic feeling.)
I decided to stick with it, not knowing what contact exactly had caused that effect before and there is usually a degree of anxiety mixed with an energy-surge type feeling that I genuinely can not explain at all (I mean it this time!) after a major adjustment or even a diagnostic test like the one that they use to check the impedance and general function of the device.
I’m not going to sugar coat it, the first few weeks were hellish. On the journey home in the transport ambulance I clenched my fists so hard on the side-rails of the stretcher that they both locked and hurt for days and my tics were largely unaffected at first. But after a month or so, I started to see some improvement. And then about a month and a half ago, it all happened at once. The feeling of dread went away and my tics started to calm! When it actually happened, it was so fast that I could barely keep up with my own improvement!
The finest moment for me so far was this week – I had to go to London to see the DBS team – so I decided to do it alone, by train – without the wheelchair. I arrived at the hospital completely unscathed and I honestly think that the DBS were as over the moon as me! I was able to sit there and chat about the tics (previously, this would make the tics get worse) and I got my lowest score ever on the YGTSS (Yale Global Tic Severity Scale) – it has gone from the high-nineties to mid-teens in the space of a couple of months!
Which leads me to my final unexpected announcement:
I start my new full time job on Monday next week!
**Bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias bias – see what I mean – that word is now ruined for me for today.
It has been an extremely long time since I actually updated this blog – I feel like I left it at a bit of a loose end. It’s been a bloody complicated year or so, filled with a lot of major changes to my life, treatment and to be honest – quite a rollercoaster ride!
One of the reasons that I stopped posting for a while was that my eating disorder got worse again – badly enough to require treatment which is still ongoing. I don’t want to go in to much detail on this because, unlike almost every aspect of my health, I am not very comfortable being open about it. It was lurking under the surface for some time and I managed to keep it secret from most of my family and friends for years. However, one of the changes in my life has really spurred me on to get it sorted and with the exception of a couple of slip ups I have been improving for a few months now (I will add some more detail about the news a little later in the post because it is big news!).
The DBS has had some positive effects on my Tourette’s – at times it has helped a lot more than I was expecting but so far it has not been quite as effective as I had hoped. It has at least stablised my symptoms and seems to have stopped them from getting worse than before, but I am still having to use the wheelchair the vast majority of the time and although there has been a slight change in my symptoms, overall they remain fairly severe. I cannot walk or stand unaided/unsupervised because of the falling/arching backward and still require help to do basic things, such as handling sharps or hot objects. However – there is still a long way to go with regards to optimising the settings of the implant. The DBS team has been incredibly helpful and supportive through all of this! As of typing this I am at just over 4v on four of eight contacts and had to have a replacement battery slightly sooner than originally expected. The battery is outputting a total of ~16v twenty-four-seven though, so the replacement of the original unit wasn’t entirely surprising and only around six months to a year off of the estimate. The timing could not have been better for the replacement, either, because I found out that I am going to be a father! The new one is wirelessly rechargeable, really appealing to my inner nerd – although it does mean that I have to strap a charging device to my chest after my evening meds and sit for anything up to an hour or more to keep it charged every couple of days!
That’s the big news, back there. That’s right, I totally stealthed it in there! I am going to be a dad! Total shock! We found out on Valentine’s day, of all days. Between then and now I have been focusing all of my attention on getting my ED stable and trying to work with the DBS doctors to optimise my settings, recovering from battery replacement and get the best improvement possible.
I am really, really hoping that with a combination of changes to the DBS settings and medication, alongside my psychological therapies will help to not only stabilise the symptoms but achieve a long term and meaningful reduction and allow me to go back to living relatively normal life, not only for me – but for Holly and our daughter (who is due in October!).
I have been given the go ahead to release my posts relating to the clinical trial for Deep Brain Stimulation, a treatment for Tourette Syndrome, which I was a participant in last year. I was asked to wait until the results were published, which has now happened, so – green light I guess!
There is an abstract/overview of the study available at thelancet.com.
It’s been a bumpy ride and I admittedly haven’t kept to my original goal very well of trying to document the process – largely because it was very strange feeling like I was posting to myself! But I hope that it is of help to somebody, or at the very least an interesting read! As the treatment is ongoing I am hoping to keep updating this blog.
Before you read the posts that I am releasing today, please bear the following in mind:
I cannot stress enough that these are my personal notes from involvement in the trial as a patient, I have no medical background and there may be any number of misunderstandings, incorrect opinions or incorrect information.
If you don’t want to go read down through the entire blog, here are links to the previously hidden/protected posts in order of the oldest to the most recent:
- DBS – The Process So Far
- A Whole Day of Testing
- A Nice Break At Least!
- The Healing Process, The Switch On, The Screening and The Trial
- The White Bear
- Mid-Trial Visit
- The Re-Randoming!
- In the Dark
- Clinical Trial Finished!
- Minor Update 🙂
- A General Update
(Apologies if I have missed any but I think that they are all there.)
I don’t know where to begin with this post so I will just let it go where it goes!
Things have gone a little awry with the Tourette’s recently – having a bit of a bad episode (albeit, reduced in severity by the DBS) and along with the head issues I mentioned in my previous post I have ended up neglecting my blog a little bit.
The hope is that this current resurgence in symptoms I am experiencing is because I am having one of the bad episodes that are natural with Tourette’s. It does seem to be gradually fading off at the moment, but I have had a couple of incidents while out in the wheelchair that have sapped my confidence a little. The most severe was falling out of my chair and in to the road (off of a high kerb) as a result of my back hyper-extending while going down a hill. That resulted in me having to take an emergency trip to London to check that I hadn’t damaged the battery/control unit in my chest, as I landed on the left hand side of my body (where the implant is located).
All in all though, still a definite improvement compared to the time previous to the operation, without a shadow of a doubt! I am keeping my fingers crossed that this is a blip in an otherwise general trend of improvement. Every time I have a bad day, it helps me not to feel so sorry for myself by remembering how much worse things really were this time a year and a half ago – or even during my last major bad episode. Although I am still stuck in the wheelchair, requiring help to do everyday tasks I can still see a light on the horizon – however far away it may be. I am trying very hard not to rush to conclusions about things though as I was warned before the operation that this is in no way a cure, and best case would offer me a considerable reduction in symptoms. Considering that it has only been about six months or so since the end of the trial I am impressed with both the improvements and the treatment I have been given by the DBS team – who are literally only a phone call or an email away.
A complicating factor in all of this has been the resurgence of the head-issues – which will remain un-detailed in this post – unfortunately it has become quite difficult to tell negative physical effects from this from side effects of the DBS/medication. Even though I do frequently get “told off” for apologising by most of the people who have contact with me in a medical/care capacity, I feel bad that I am such a complicated person to treat.
One of the awesome pieces of news is that I have been given a degree of control over the stimulation! Initially I was just given the ability to check it and switch it on/off. The control unit (pictured below) allows me, at the time of writing this, to make minor adjustments myself (0.05v) between 3.5v and 3.7v (as far as I remember – I’m not 100% sure on what the upper limit was). I have been told to leave it a week between adjustments – it also does seem to be slightly more productive making adjustments myself in the comfort of my own home and not in a very “artificial” medical environment.
On a slightly more comical note, I decided to actually RTFM last week and discovered (much to my surprise) that the unit actually has a backlight!
So here’s to this bad episode ending soon (hopefully) and a continued trend of general improvement in my symptoms (hopefully x2!).
If you got this far, thanks for reading my ramblings. 🙂
Apologies if this post doesn’t make a huge amount of sense, I have had to have a lot of Diazepam in the last few days and it has left me feeling a little bit odd – I will likely go back over this post and correct any general derpyness before I actually publish them publicly. Also, reading back, please excuse my flagrant abuse of parenthesis – it is just how my mind works at the moment.
It has been a while since I have posted. I have been dealing with a lot of issues – both Tourette’s and head related.
I’m not going to go deeply in to the head issues, because I feel that they are quite private, but I will go as far as to say that they are related to my issues with self image. Things have spiraled out of control a little with regards to them and I am working bloody hard to get them under control.
With regards to the Tourette’s I will be making another post today (set to passworded/private – hopefully not for very much longer though!).
Thought that maybe I should do a start of year post recapping 2014 and a little bit of 2013!
Firstly I’d like to post this, with regards to 2013 (when this current episode started) as I think that it is particularly relevant to the situation:
Looking back, before this current episode occurred, I was the calmest I have been in a long, long time! Hindsight is always 20/20 I guess – but after reading “The Man Who Mistook His Wife For A Hat” by Oliver Sacks (I highly recommend that book, it is insanely interesting!) I can see now that I should have identified a feeling of being too well. Sort of a calm before the storm I guess. Not that it would have helped, it just would have been nice to have some advance warning!
I was doing all of my normal stuff – working hard, playing hard (going out on walks, shooting targets with friends, playing music etc) and then boom – suddenly it’s so bad that I can’t walk or work and then it reached the point where I was admitted to hospital! I’m not quite sure when the worst of it was – it could have been any number of points. It definitely peaked before I was admitted though. The problem is my pride kept me from doing the sensible thing and staying put. I was still trying to go out and walk around (even though I kept landing on my head and knees), still trying to do normal stuff which, in hindsight was putting me in a stupid amount of danger!
I think that in a lot of ways, however horrible it has been, this entire experience has opened my eyes a lot. I’ve had to confront the worst that the Tourette’s has ever thrown at me and I feel like a stronger person for coming out of the other side of it still smiling. I’m not trying to say there haven’t been some low points along the way – I have had to confront a lot of comorbid issues as well not least the depression and suicidal ideation that has come along with some of the lowest points, eating issues, feeling like a prisoner in my own home. You get the point. But I still have my sense of humour and I’m still trying hard not to be bitter.
Unfortunately a huge amount of the stuff that went on in 2014 I can’t talk about – I’m hoping to be given permission to make those posts public soon and then I will be able to talk about it a bit more, but I do completely understand the reasons that I am not able to for the time being. But there is some stuff that I can talk about.
For me, 2014 was a year of:
- Getting married! My crazy, crazy partner-in-crime Hollie actually became my crazy crazy wife! (She’s crazy, if you haven’t already gotten the gist of this.)
- Finding out who my real friends were, losing a couple along the way, gaining a few new faces in my life and getting back in contact with some old ones!
- Having to face up to my pride and stare it down. Being told that trying to continue as normal and putting your knees (and other body parts) through that sort of punishment is going to result in permanent damage was a big thing.
- Experiencing a couple of days where I was basically tic free for the first time. (I can’t talk more about that, but I really wanted to mention it because it was the most amazing feeling ever!)
- Every day being arm day! Seriously my arms are strong from all this wheeling myself about now. The flip-side there is that I’ve lost the one part of my body that I actually liked (my behind!) – but I’m sure I can get that back in the future.
- Learning to accept help and not decline it. Might not seem like a big deal but I’ve always been a very independent person. Come back to the pride thing I think, but I’m now better at accepting assistance when it is offered and I’m also getting a bit less uncomfortable about asking for it. (Not much though.)
- Finally getting a place that is accessible and suited to Hollie and myself for the long term! The added bonus, we got to decorate it ourselves!
I’m going to end the list here because I’ve run out of ideas! But I will add to it if I think of anything else. 🙂
So what am I expecting/hoping for from 2015?
Well firstly I’d like to finally get out of this wheelchair. As it stands I can get up for short periods, I can even take a couple of steps. But it always ends the same way – arched backward, dropping to the floor or a (painful) combination of the pair. So that’s my main target for this year, I want to get up and about. I’d also like to get myself employed again, because I am missing work something chronic. Yes, yes, I am one of those weirdos that actually likes to work.
To be absolutely honest? The main thing I want out of 2015 is for it to be better than 2014. Overall I feel that 2014 was a slight improvement over 2013, so if I can keep following that (admittedly, slow) upward trend, that would be just fine.
Oh yeah and I am going to stop procrastinating about stuff (like writing blog posts). Eh, actually, I’ll leave that until next year. 😛
Belated Happy New Year to anybody reading this!
It’s been a little over a fortnight now, I thought maybe it’s time for an update – before I procrastinate myself in to a hole again!
So far the results are great! Not going to build it up to be something it’s not – I am still having the full range of tics, still can’t walk without hurting my knees/head and still can’t handle hot things without beakers etc. The change is there though – I am noticeably calmer than beforehand!
To give an example for comparison, today I went to town with Holly. I did still need her behind my wheelchair because I was losing control from time to time because of the arching backwards and I still had to be incredibly careful not to kick people (legs still not the best at control!). A few months ago this would have been a much more major occasion! I have some minor aches and pains right now – but it doesn’t feel like I’ve been beaten up!
There have been some odd side effects though – trying to note stuff down when it occurs more than a couple of times or sticks around for a few days. First and foremost the vocal tics seem to be affected by the stimulation markedly less than the motor tics – Holly has taken to calling me “noisy” as a nickname! Other side effects have been things like:
- Getting panicky for little/no reason
- General “brain-fog”
It’s kinda late at night right now and I’m falling asleep – probably missing out loads that I wanted to get in to this post but I’m going to have to call it quits! My eyes are closing as I write this! As with other posts – it will not be published publicly for a while yet, not until I get the go-ahead anyway!
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!
I have decided (and informed the DBS team) that at the end of the trial I do not want to know whether I was on or off during either period. This may change at a later date, but for the moment I would rather just stay in the dark.
It may seem a little strange, but I’d rather have obsessions wondering if the changes/improvements have been placebo or not than find out for definite that any changes were in my head and risk the OCD making the symptoms artificially worse.
Probably doesn’t make sense to anybody else – this post won’t be released for another month or two anyway!