I will do my best to remember that I have this account and try and post on here from time to time.It has been such a long time since I posted on here (just over a year, maybe a little more). This is somewhere I need to remember to post really, as it's a good source for people to find information on Tourette's.
Firstly, until I get told official terms, when I say attack I am referring to the sudden exacerbation of symptoms - some people call them ticcing fits and I have heard so many different names! When a waxing period spirals horribly out of control (like what happened when I was working at the hospital) I am currently referring to that as a meltdown.
So here's the update since my last post:
I did lose my job at the hospital, they made it very clear a job wasn't going to be found from me in the time period given. But the Topiramate worked - incredibly well at first! It brought the symptoms under control, and pulled that massive meltdown of symptoms under control - quickly it seemed, not immediate but it did the trick.
Thanks to that, I was able to find myself a job in a local Newsagent working as a supervisor - I got plenty of funny looks but for the most part did really well at the job - as long as I'm engaged in stuff, especially during a waning period, I'm fine. It waxed and it waned like it always does for the best part of a year - during which I pretty quickly jumped into the role of a supervisor when the job came up, and was in the process of being doing the company management training course with the hope of becoming an assistant manager at another store.
Unfortunately I started to get some very odd side effects from the Topiramate - initially it was just loss of feeling (tingling) in my extremities, spreading up my limbs and a few other things - but then I started to lose vision in one eye. When I was checked by an optician it was found that I have lost vision (which has come back a lot but not entirely even now) in one eye, and that the affected eye had developed Chemosis (http://en.wikipedia.org/wiki/Chemosis) and I was immediately taken off of the medication as a result.
Then a few months later it happened, this time out of the blue. I have identified a lot of triggers that probably contributed to last year's disaster, and although there were a lot of stresses present in my life nothing that I could think that would cause such a terrible waxing this time.
The first sign - which I probably should have taken note of - was my tics started to behave really strangely. I started developing new ones and old ones started coming back.
On the walk to work (a mile or so) I would tic a lot, then I would get to work and the tics would die down, I think looking back I may have been subconsciously suppressing them to a degree. My ability to suppress consciously is atrocious though, so I don't know for definite.
Then on the way home they would get worse again. But I ignored it and kept going, thinking I was just having a little bit of an odd time. This went on for a month or two gradually worsening, possibly more - my perception of time is really thrown off at the moment.
Then finally I started very ticcy in work and had a few attacks, and my stupid-ass stubborn nature made me refuse to back down, I kept going at it until finally I turned up for work one day and my manager explained to me that I could not be in the shop in my current condition as I was posing a danger to myself (she was being brutally honest, I completely respect that). I was told to take some time off to sort things out. Unfortunately it didn't get any better, it just kept getting worse.
It all culminated in me being hospitalised on a Neurology ward for nearly a month (I was discharged a week ago nearly now) as it was decided I was a danger to myself. The staff there were absolutely amazing, they had never dealt with my condition before, especially to the level my attacks were reaching. During this period I lost my baseline for comparison, weeks before this it reached a point where what I was calling "calm" I would usually define as an "attack".
The worst tics (most dangerous) that caused this were:
-Hyper-extension of my back/whole body backwards - this was causing me to land on my head
-Dropping to my knees (which I am told is an "atypical tic")
-Slamming myself backwards/headbutting movements
The other major players were:
-All the usual neck tics; jerking, twisting, headbutting
-Knee movements (I had bruises on my shoulders from a tic where I was kneeing myself in the shoulders)
-Arm movements (flicking, lashing out, punching myself)
I literally could fill the limits of this post with the motor tics... I'm going to stop there. I've had new tics, old tics coming out of the woodwork.
My vocal tics are through the roof, copropalia, making a popping sound with my lips (which caused them to actually become chapped and sore at one point), complex whistling, new words, some random outbursts and again more than I can (or want, right now) to list. Two frustrating things are that I have got back repeating single syllable tics like "kuh" or "tuh" over and over, and also a stutter - thankfully mostly during attacks.
As a result I can't work in the store at the moment - my tics are too much of a danger because of the way the store is laid out, there is no discrimination here, they seem as gutted as me that I have to go, so my contract is expiring at the end of this month and will not be renewed. I don't like to throw this term around, but this is becoming soul-destroying. This is the second time in a two years that I've lost a job I really enjoyed, with long term prospects. I really enjoyed working in the shop and got along with all of the staff - they accepted me for who I am and didn't take the mick like people have in jobs in the past.
After a few weeks and back and forth with various neurologists etc, in the end it was decided the only thing that can really be done at this point is to get me back into my home environment with a care package and emergency alarm (see pic), and medicate me out of my brain. Originally they wanted to discharge me to a community hospital, but the community hospital were very much unwilling to take me as I was "too far out of their remit". My official instructions are to stay put at home and try to ride it out as best as I can with care and help from friends. Previously I was being trialled on Zonisamide, as it is very closely related to Topiramate, but unfortunately it didn't help.
My current medication regimen is:
-Diazepam 5mg three times daily, with a further three doses between when required (up to 30mg)
-Baclofen 15mg four times daily
-Co-codamol for the pain (when needed, as little as possible as I hate taking it)
Things are a lot more stable than a few weeks ago. I have tentatively tried taking less of the meds and found fairly quickly that this stability is because of the meds - and I'm exploring other options with the hope of removing the three optional doses as I don't want to remain on this sort of Diazepam dose for too long, becoming an addict and the withdrawal process do not sound fun and I also do not want to lose the only emergency med that can slow/stop an attack before it gets out of control. (that they can prescribe, at least)
It is frustrating because I am having trouble identifying times when I am getting worse. I'm often having to rely on others (cue my girlfriend telling me to listen to her and stop being an idiot/stubborn) to point out when the tics are getting worse and I need an extra dose.
I feel like there is so much more I want to post, but I don't want to end up in a TL;DR situation (older web slang "Too long; didn't read.") so I'm going to wrap this up now.
This has been - without exception - the worst my Tourette's has ever been, in terms of both severity of tics, frequency of attacks and damage caused. But I always try to look for the positives, and the way I see it this has taught me about myself a lot.
I have learned that I need to start accepting help from people, I need to drop the pride a little and admit when I am in a bad situation.
I was taught a saying years ago, "I have Tourette's but Tourette's doesn't have me." - this may be helpful to some people but I have taken it too far and I've become obsessed with fighting against it. I need to accept that at times like these I can't use the kitchen, it's too dangerous, I need to accept it when I can't go out because the tics are putting me in danger and stop trying to do it anyway.
It's also weirdly helped put me in touch with my emotions a lot but there are some really personal things there I don't want to go in to.
I've also learned that sometimes I just need to stop and ride it out - like I am now.
Long story short, I really want this to end and I'm at a loss as to how I'm going to rebuild from here. Hopefully things will become more apparent as this wanes.
I am really hoping that the knee-dropping tic especially is temporary and just a result of this waxing/meltdown, as I have been told that if I give my knees much more punishment I am looking at even worse damage than is already done. They told me at the hospital that the reason I wasn't being issued with a wheelchair is because certain tics (mainly hyper-extension and slamming backwards) are too powerful and might tip me out, so they couldn't issue me with one for safety reasons.
I will finish on a bright note - I am apparently a candidate for the Deep Brain Stimulation trials when there is funding again. I have been assessed and had an MRI scan - I will get the results in my next appointment with that team (mid-december) I assume - and fingers crossed it will be positive.
My dream would be to not keep adding to the list of things the Tourette's has taken away from me - hobbies, courses, jobs etc - or at least stop it from having these horrific meltdowns.
I will do my best to remember that I have this account and try and post on here from time to time.
Love to you all. x