Tourette's Syndrome

[BookLoverL]

This forum probably isn't the best place to ask this question in terms of general knowledge pool, but I thought I'd ask it anyway.

I have Tourette's Syndrome, which I currently manage with the drug clonidine, which, being in the UK, I get cheaply through the NHS. If I stopped taking this drug, I would be perfectly healthy and wouldn't die or anything, but also I would have significantly more tics and go from "can appear as a normal person without weird behaviour for many hours at a time" to "nearly constantly ticcing, unable to walk down the road without making a series of annoying and visibly obvious movements and loud noises". (This is based on the time when I was in the process of diagnosis, before I'd gone on the medication yet.)

Therefore, while I'm satisfied with the drug now, I'm a bit worried about what happens in the future if it stops being available to me for any reason (significant increase in price due to destruction of public health service, climate change/resource depletion making drug manufacture unfeasible, etc.). So I was wondering if anybody knew any herbal or other non-drug methods I could note down for the future and potentially try to manage the condition if that situation appears within my expected lifespan.

I accept that people on a random internet forum may not be giving me sensible medical advice, blah blah blah, promise to back up any suggestions with my own research, promise not to sue anyone, etc.

[Dream of Freedom]

I seem to recall the book Grain Brain by Dr. Perlmutter discussing a little girl with Tourette's being helped by a gluten free diet. The author cherry picks cases where his diet works of course, but it may be worth a read/try.

You should consider recording the question for the Ben Greenfield fitness podcast. They have q and a episodes and are always talking about fringe medicine and supplements.

https://bengreenfieldfitness.com/ask-a- ... -question/

[Nomad]

I was wondering if the trigger in the brain for the Tourette's was similar to what happens in epilepsy.
It turns out the before there were drugs for epilepsy such as Tegretol, what they use to do was put patients on a ketogenic very low
carbohydrate diet.
That could be something to experiment with. If you haven't tried ketosis before, you can get Ketostix from the pharmacy to monitor it.

[horsewoman]

The first step, in my mind, is to read obsessively everything that there is to know about it. All that science ever produce. Become an expert in it. Then learn more, go beyond the object of your research and study all that is slightly related or bordering on it. At some point, you will start to build some theories about what is going on. Then the time of experimentation comes.

This is really important when suffering from a condition very few people have. I deal with my "mental peculiarities" and health questions this way, too. But I think in your case the social cost of going off meds would make experimenting really hard for you. This is difficult. My own experiences have taught me that one can do a lot with tweaking diet and changing the environment (less stress, better routines).
Recent research points towards bacteria being responsible or influential for a lot of processes in the human body. Bacteria depends of course a lot on how you life and what you eat. So maybe this is something to look into.
I know nothing about Tourette but since we deal with Aspergers ans ADHD in our family I did a lot of reading with regards to how brains work. Even as a layman there is enough info out there to get an understanding and ideas how things might pertain to your situation. But still I do not see how you could go off meds while still being a somewhat "functioning member" of the workforce. I really cringe when writing this, because I really really feel for you. I need to monitor my speech all the time as well, for I'm super blunt and often don't realize that I have really mortified people with pointing out certain things. It such a mental drain to be "different", and to be completely at the mercy of something really sucks.

Is there a way to reduce meds gradually while you try out certain things? Or is it a "all or nothing thing"?

[Jason]

This forum probably isn't the best place to ask this question in terms of general knowledge pool, but I thought I'd ask it anyway.

Further to that qualifying statement, do your symptoms include that sudden but entertaining explosion of curse words? Nothing personal, but that shit cracks me up. There's this video of some meteorologist pointing to his weather map, forecasting rain and all of sudden he's telling people to go fuck their grandmothers with their savior's dick or something like that. I would think that would be worse than the ticcing, at least from your end.

[BookLoverL]

Thanks for all the advice so far!

bigato, your suggested action plan sounds like a very sensible idea. I'll attempt to do some research as soon as I get time. Right now, what I know is that a) the cause of Tourette's isn't entirely known, but it's suspected to be something to do with serotonin in the basal ganglia; b) the drug I'm taking doesn't work for everyone who has Tourette's, but it worked for me - it's the first one they try you on because it has the fewest side effects; c) clonidine was invented as a drug for lowering blood pressure, but according to Wikipedia, the part that's probably relevant to Tourette's is that it's a α2-adrenergic receptor agonist, whatever that does (the peak of biology knowledge I reached so far was reading a textbook designed for exams for 17-18 year olds for fun).

Dream of Freedom, I'm not a huge podcast fan, but I'll check it out if it might have info, thanks. My dad already eats low gluten and I had a brief semi-Paleo phase as a teen, so it probably wouldn't be a huge hardship to try low-gluten, but I also enjoy the fact that a lot of gluten-containing things are tasty and/or cheap, so I might not try it right now.

Nomad, I'm not sure if the mechanism's similar to epilepsy. I think there can be a lot of different types of epilepsy, so it's possible that it could be for some of them. What IS true is that compared to the general population, a significantly higher percentage of people with Tourette's have either ADHD or OCD.

horsewoman, I've been prescribed a certain amount of meds, but I have been known to take a lower level some of the time. It's still effective, but not as effective, so basically, the more hours of work/other activities where I need to suppress tics I'm doing in a week, the more I find I have to actually take my proper dose. I'd gone down to only 1 pill a day at one point during a period of less work that I had, but with my current level of work I need to take 2 a day. (This was what I was prescribed before, but my specialist has just given me permission to try out taking 3 a day after my mum mentioned some stuff at the appointment. I did this for about 1 week but realised it increased side effects slightly more than I'm happy with, so I've gone back to only 2 on most days, and will probably correct my prescription back to that at some point.)

Definitely the social cost of it would make experimenting hard. For this reason, I'm considering mainly doing all the research part now, getting a good solid list of things that might work with detailed reasons why, etc., and then doing the actual experimenting some point in the future at times of less workload (i.e., at some point after I've managed to replace the part-time office income stream I have with something else). Definitely I find it a significant energy drain to appear professional on a non-zero number of days, which is likely why I've never managed to maintain a proper "full-time" work week for more than a couple of months. (I actually only tried maintaining one once, but that was enough to convince me I didn't want to try again.)

Jason, around 10% of people with Tourette's get curse words as vocal tics (it's called coprolalia). Very fortunately for me, I'm not one of them.

[Jason]

Is Tourette's physically painful? I would imagine all that ticcing is enervating, but does it hurt?

[BookLoverL]

It can be, depending on the tic, and every person with it has different tics, which also vary over time. Also sometimes it's just plain annoying. The highlights (lowlights?) (mostly from when I was unmedicated but not all) include: bruised knees from any number of desks/cupboards/etc., avoiding sitting in front of anything vaguely sharp because of tendency to jerk head backwards, my right shoulder trying to slam upwards into my left ear, a whole morning of gently hitting myself in the face (lightly each time, but by the end of the morning I sure had a headache), sore throat from a repeated vocal tic that sounded like a creaky door hinge, loudly shouting "beep!" at such a pitch and volume that it hurts everyone in the house's ears. Also, when I was unmedicated it would take me twice as long to walk down a pavement (sidewalk?) if it had a complicated pattern with the paving slabs, because I had to walk on them in The Right Pattern, and I learnt not to hold onto full mugs or glasses for too long after I threw the contents of one everywhere with a sudden hand movement. Then sometimes when I'm suppressing I deliberately cause a mild pain sensation such as squeezing one of my hands with the other one very tightly because it prevents my brain from making me do something more visibly obvious.

(On the non-painful tics part, some of them include various iterations of sticking my hand into the air in various ways, waving my arms about, sniffing, blinking, turning my head to the right, and also if I'm deliberately suppressing/trying to be subtle I do things like scrunching my face up, wiggling my toes/tapping my feet, and if I'm driving and get the urge to tic I tend to sing loudly/rapidly, including with nonsense words, because a lot of movement tics are not appropriate for driving and if I do voice things it means I don't have to do as many movement things.)

So, yeah, part of the bad aspects are the social ones, but overall Tourette's would be annoying to the person who had it even if they were the last person left on the planet. But overall, even when I was unmedicated I still managed to live my life, get my assignments done (I was at university when it developed from a couple of ignorable things to a big major thing), browse internet, complete projects, etc. Some people have the symptoms worse than me, but I don't feel like I have it so bad. Even unmedicated I did archery occasionally, for instance, because I could suppress for long enough to do the end, and then put the bow down and pace around a bit and let all the energy out, then by the next end I was ready to concentrate again. But still, it would be constant low-level annoyance.

[Jason]

Archery? Really? Like croquet wasn't good enough? Maybe a little badminton? Fly fishing? I mean if I spent all day inadvertently hurling drinking glasses across the room and making noises like I was a Fedex truck driving in reverse, I don't think shooting arrows would be my first choice in leisure activity. That seems slightly more safe than high wire walking or being a bartender in Goodfellas.

[BookLoverL]

I was already doing it before I got the Tourette's, actually. I didn't take it back up properly until I was on the meds, just did it once or twice.

You get to know your own capabilities, and some days feel worse than others. If you're going to be ticcing more than usual, you know because you can feel the pent up energy, and decide accordingly on that day to be careful with the sharp objects etc.

Also, it is possible to suppress tics for a while. Unmedicated, it wasn't a very long while, but it was long enough for what I needed. If I felt like I was becoming unsafe, I would have lowered the bow, stepped back, and put it down.

When suppressing, it's entirely possible that the only tics you are doing are things like the toe-wiggling. The reason not to suppress all the time is that the longer you do it, the worse they'll be later when you stop. So, for instance, after you spend 6 hours at work making sure you only do things that appear "professional", if you're on only a low dose of meds, then when you get back home after driving you might spend the next 10 minutes frantically pacing around your house because you literally can't stand in one spot, and have very frequent tics the rest of the day, whereas if you hadn't been doing that there would have just been the occasional tic and it would have barely bothered you at all. It's perfectly safe to do something like archery/chopping dinner with a sharp knife/etc., as long as you put the equipment down when you're not using it, and you're aware of your own limits.

Now, I wouldn't have wanted to be doing anything dangerous if someone was around trying to troll me or something by making sudden loud movements. Hearing or seeing things that look/sound similar to tics can cause you to tic as well. But generally at an archery group, everyone is concentrating and following safety protocol, so that's not an issue.

[slowtraveler]

How do you feel about the South Park episode dedicated to Tourette's?

[BookLoverL]

I don't really watch or like South Park in general, because I don't go for that sort of humour, so I haven't seen the full episode. But I saw a clip on YouTube of part of it where they showed a Tourette's support group, and that part actually had some accurate information. Of course, being South Park it has a really high emphasis on the coprolalia, but unlike some other supposedly "funny" takes on Tourette's I can think of, it did actually acknowledge that Tourette's isn't just about swearing.

[horsewoman]

Two things come to mind, first would be meditation. I got into it a couple of years ago and boy did this boost my coping skills. Since I'm pretty hyper sitting down for more than 10 minutes while doing nothing was more or less unthinkable to me. I stumbled upon "brain entrainment" and did a 6 month course which really taught me to sit still. It was grueling first but I saw tremendous differences in my mood and coping skills after completion. I'm still not 100% sure if this thing is real science or new age hippy shit wrapped up in a fake lab coat, but in the end it worked, so I don't care. I also use binaural beats during migraine attacks and have seen some relief in this regard as well. Perhaps it would be helpful to you as well. There are tracks on youtube.

The other thing is part-time work. I work three half days a week, and while that means little money I have very little forced contact with other people. Plenty of time to unwind and fill up mental energy to deal with co-workers and clients.

[Jason]

After reading this thread, I realized someone I know has Tourette's. He a ticcer. I wasn't sure what it was because he wasn't telling me to fuck his dog and stuff like that. The fact that I don't like him makes it really annoying.

[horsewoman]

I didn't know that either, that Tourette can look like this. I used to date a guy who had several tics. He did a lot of endurance sports (racing bike, wind sailing, gym) and that seemed to help him. I never really gave it a thought why he was this way, because it did not bother me at all. However I often wondered why he was so driven, but after reading this I think perhaps he knew that his symptoms were less prominent this way.

[BookLoverL]

Well, I'm glad I'm managing to spread knowledge about it, since it's annoying to meet people all the time who have no idea about it. I already work part time and exercise regularly. I'm glad for all the ideas, and I'm going to keep researching, though.

[Jason]

My understanding is that 50% of all the people with Tourette's had parents with Tourette's. Is that your situation? I could imagine how crazy that would be, especially if they had copralalia. It would be like a Martin Scorsese movie 24/7. And even if it's not, based on your description, the house would sound like the emergency response to 9/11.

I googled "famous people with Tourette's. This is my version of list, ranking them in historical importance. These were the only people I recognized.

Dan Ackryod
Howard Hughes
Mozart
Samuel Johnson
David Beckham