It was in the spring of A.D. 2000 that I told a psychiatrist about the dozens of tics I had been having uninterruptedly since about 1971; not that having them as such was a major problem, but a few of the tics were causing ever more damage. In particular this concerned banging the teeth on each other (damage to teeth, molars, fillings, jaw joints, jaw muscles, tongue, cheeks, lips), and head shaking (neck muscles, spinal disks, brain, inside of the skull). Not meant here are tics whose damage is merely collateral, such as those that cause liquids to be spilled onto clothes or furniture while drinking, or glasses to be shattered on the kitchen unit while doing the dishes. The psychiatrist prescribed haloperidol to suppress the tics; a brief account follows.
I started with one pill of 1 milligram per day. This did reduce the tics very significantly, if not totally, right away. There were side-effects, however: drowsiness, sleepiness, becoming a bit slower motorically, and having some difficulties with urinating, like not emptying the bladder fully and having to get out of bed in the middle of the night. The latter probably has to do with the muscles around the exit of the bladder which have to relax to be able to urinate, and one of which is controlled by the parasympathetic nervous system, which in turn is affected by haloperidol (but I did not know all of that at the time).
After one or two months, the dose was reduced to half a milligram a day, mainly because I felt I was getting too slow, physically (some might call this "being tired"). The effect on the tics remained. But again a month later, about three months after starting the treatment, the worst side-effect occurred: I became depressed. It must be noted I had been somewhat depressed before starting with the pills already, but it got much worse at this point. The enclosure of the pills said that haloperidol may make a latent depression manifest, and that is exactly what happened. Around that time I stopped using the drug.
One or two years later — the depression had meanwhile been resolved with paroxetine — I was confident to give treatment of the tics a second chance. To avoid getting depressed again, this time haloperidol in liquid form was prescribed, such that one drop was a tenth of a milligram. I began with 0.2 mg a day. This reduced the tics to satisfaction (but not fully) without noticeable side-effects. I kept this up for one or two years, sometimes going to only 0.1 mg a day. Eventually I stopped using it altogether, partly because I did not like the idea of having to use medication every day for all of my life, and partly because I was hoping the worst tics (those that caused damage) would stay away without haloperidol too now. With such a low dose, one eventually wonders whether the substance is really effective, or it is perhaps a kind of placebo effect, and therefore one ends up thinking one could as well do without it. The tics did come back though, and have remained untreated since.
It may be noted that I seem relatively sensitive to haloperidol, and therefore a rather low dose suffices. Sensitivity to a substance differs per individual and per substance, depending on one's genetic make-up. In hindsight, 1 mg a day was far too much to start with.
For clarity, the tics include, but are not limited to: head shaking, rolling the eyes backward and blinking, pulling faces, violently banging the teeth on each other with brutal force ("awake bruxism"), coughing, throat clearing, various dry and wet throat sounds, swallowing air, shaking the hands and wrists, arm and shoulder movements, upper body movements, and various combinations from all of that. For further clarity it is pointed out that compulsions and obsessions are not tics, and therefore not mentioned here.
Remarkable is that the tics mainly occur when alone or in the presence of persons I have known for a long time; they stay largely away in formal situations or in the presence of relative strangers. As a result, the psychiatrist could not observe the tics (or only in a very mild form) and that is probably the only reason why no diagnosis of Tourette syndrome — which this beyond doubt is — has been issued. To avoid confusion, one is reminded that the shouting of profanities or other words, for which Tourette is famous, only occurs in a small minority of patients, and that the "vocal tics" are mostly coughing, throat clearing, and various throat sounds. Even medical doctors may not know this (and erroneously think the uttering of words is required for the diagnosis) and that may be one of the reasons why the syndrome is sometimes missed.
The fact that the tics do not happen in formal situations or in the presence of relative strangers might give an indication of how they could be stopped or treated in general, although I have not solved that problem yet. Given that the tics are clearly related to the hormone dopamine (as testified by their strong response to haloperidol, a dopamine antagonist) it is tempting to think in terms of hormones here too. A hormone that is very likely produced in said situations is cortisol, a "stress hormone", while dopamine itself apparently increases too in stress situations. That those things happen in me in such situations is confirmed by a number of effects I have in direct contact with people: not well being able to think and concentrate, to retrieve information from long-term memory, not knowing what to say, words not occurring to me (as in aphasia), functioning at a lower intelligence level than my actual one, and more. It is now known that stress-induced cortisol and stress-induced dopamine impair the functioning of the working memory, and those effects are exactly what one would expect then. Somehow the complex of things happening with hormones and neurotransmittors under stress prevents dopamine from causing tics and instead results in cognitive impairment; but I do not know exactly how.
Noteworthy about the banging of the teeth is that it differs from "teeth grinding" in that it is done while awake, whereas regular teeth grinding is mostly done in bed while asleep. Therefore the usual therapies for teeth grinding, such as tooth protectors worn in the mouth at night, are useless for Tourettic teeth banging if the latter occurs in the daytime. I have tried a hockey tooth protector, but, while it obviously stops the teeth banging, it impairs one's ability to perform normal daily tasks such as drinking, eating, and talking (even to oneself). Something similar can be said about this neck stretcher; stops the head shaking tic magnificently, but there are penalties in everyday life.
Then, it is important to note that the tics, contrary to what people think, are related to being at ease, relaxed, oneself, doing things that one likes to do. The more at ease and oneself, the worse the tics get and the more there are of them. The persistent notion that tics betray "nervousness", "tension", or "being uneasy" is gravely mistaken, is the opposite of what is the case. There exist no doubt many for whom this is the same, but not all have the gift of the word to explain it as clearly as has just been done. It is herewith made known. The same goes for the phenomenon that tics stay away in formal situations or in the presence of strangers; that is hard and awkward to explain, and thus hinders the making of a correct diagnosis, especially since diagnostic criteria require the tics to have been observed by a professional.
Also typical for this condition is that in different periods, different sets of tics become prominent. They alternate, as in a relay. This may give bystanders the impression that the tics are absent most of the time, and only return occasionally for a brief period. The opposite is true: There is never a single day without them, only the particular set of tics that becomes manifest changes over time. This, too, is difficult to make clear to who do not know it by their own experience, probably because it is unimaginable to them.
Regarding being able to suppress tics, this is only possible to a reasonable extent when I concentrate fully on it and do nothing else; I can then feel an "urge" coming, and control it with effort. The moment I am doing something else though — so, all day long, normally — there is no focus or attention on the tics any more, and they start again without my being aware of it beforehand. To feel tics coming and suppress them requires full concentration. Any activity makes that concentration impossible and therefore brings the tics back, and that is likely what gives observers the impression that tics get worse under stress or with effort. But it is not the stress or effort that evokes the tics, it is the inability to concentrate on the tics while doing something else.
While haloperidol is a neuroleptic (anti-psychotic) medication that has long been used to treat tics, more recently one has begun to prescribe alpha blockers for the same purpose. Apparently those are effective too in some cases, and with fewer and less serious side effects than one gets with neuroleptics. The effect is said to become less or vanish with time though. I have no personal experience with alpha blockers yet, and am interested to hear about it if anyone has.
Nicotine, either in tobacco or in plasters or chewing gum, is also reported to reduce tics. Because of its harmful nature, the cure may be worse than the illness with this substance. Tobacco is the only "natural", "herbal" remedy that is effective against tics that I have heard of so far.
In some severe cases one surgically places an electrode deep in the brain, near the thalamus, to stop the tics through electrostimulation. I have as yet no experience with this so interesting and appealing procedure.
Some suggest that mercury amalgam fillings in teeth cause tics, or even the the whole Tourette syndrome, and that removal of the fillings is the cure. The expression "mad as a hatter" reflects this notion; hatters used a lot of mercury and apparently had tics like head shaking and swearing. I did not believe much of this in the past, but must admit that my tics have become somewhat less over the past several years. In that period, the amount of amalgam in my mouth went down through extraction of a few filled wisdom teeth and replacement of a number of amalgam fillings. My tics started around age 6 or 7, when the school dentist began putting amalgam in my teeth. For most of my life I have had about 13, mostly very large, amalgam fillings my mouth. Currently I still have 5, mostly of moderate size. I do not exclude the possibility that amalgam causes tics and its removal cures them. I will observe what happens over time, as I lose more amalgam through loss of teeth or replacement.
Some of these may well work for others, or may work for me on a later occasion when I retry them:
Early 2019 the substance cannabidiol (c.b.d.), freely available only in some countries and states, was in the news, and alleged to be effective in patients with illnesses like autism or Tourette. I have tried it on myself for about seven months and initially thought it seemed to have some effect. This effect was so small that I was not fully certain whether it was real or imagination, but in periods when I stopped using the c.b.d. oil, the tics seemed to worsen again. I tried a cheap and an expensive brand and found no difference in effect. I tried the standard concentration (2.75 % c.b.d.) and the "high dose" variant (5 % c.b.d.) and found no difference in effect there either; the 5 % did irritate my throat more though.
Throat irritation was the primary side-effect I noticed, and it could be reduced or prevented by keeping the oil in the mouth as long as possible before swallowing. Later I also got irritation of my stomach, which I tried to prevent by only using the substance on a full stomach. I tried to use the maximum dose of 15 drops a day with the 2.75 % variant, although in practice that may have worked out as around 20 drops since it was hard to count the drops; I could not possibly see them fall, not even in a mirror, so I had to count as I felt them, and I seemed to miss a few now and then. The cost was about 25 to 30 euros a month with the cheap brand and standard concentration of 2.75 %, and would be around 120 euros a month with a more expensive brand and the 5 % version.
I stopped using c.b.d. oil because it kept irritating my throat and sometimes stomach too much, and because I noticed too little effect. I have never been certain that there was any real effect.
The classical advice; alas, not only is the execution of relaxation exercises very difficult because the tics get worse, not less, when I try to "relax", but even when successfully executed this approach has had no effect on the tics whatsoever. I tried not only regular relaxation methods, but also self-hypnosis and suggestion with and without recordings. In some periods I did succeed in reaching deep relaxation or trance-like states, but this, or the suggestions applied then, had no effect on the tics in everyday life.
In (cognitive) behaviour therapy one uses methods called "exposure and response prevention" and "habit reversal" to treat tics. The first simply means that you sit down and concentrate on feeling the tic-urges come, and suppress them. The second means to learn to perform some movement or activity for a particular tic that is incompatible with that tic, makes it impossible to execute the tic. A counter-movement that you make whenever you feel that tic coming.
I have tried these methods on myself. My experience with "exposure and response prevention" is that it only works as long as I do nothing else than focussing on the tics; the moment I start doing something else — so, all day long, normally — the tics occur again without my feeling them come. My experience with "habit reversal" is that the counter-movements quickly become new tics in their own right, while the original tics they were supposed to counter remain too (because I mostly do not feel them coming so I can not actually prevent them with the counter-movement).
It may be that this therapy does work when given by a second person; if anyone is willing to do this with me I will give it a try, but am not going to pay for it.
Some think tics may be caused by low serotonin. However, I have used the antidepressant paroxetine for five years, during which my serotonin must have been significantly raised, and this had absolutely no effect on the tics. S.S.R.I. antidepressants are known to be effective against compulsions and obsessions, incidentally, but tics are not compulsions; a common confusion.
This complete lack of response to paroxetine, and the strong response to haloperidol, suggest that my tics are not so much related to serotonin (shortage) as they are to dopamine (excess), and that is also how tics are usually thought of in psychiatry.
A popular notion holds that caffeine causes or worsens tics. I have stopped drinking coffee, cola, and even tea (with caffeine) several years ago (for another reason), and this has had not the slightest effect on the tics. Also, the tics started when I was about six years old, while I did not drink coffee until I was about eighteen. Clearly, the tics are not related to caffeine, or the effect of caffeine on hormone/neurotransmittor levels is much too small to be noticeable.
Some think magnesium supplements can help to reduce tics, as magnesium, apparently, is important for the nervous system, and a shortage — called "deficit" in the trade — is supposed to cause a wide array of symptoms, among which tics. I have tried a high-quality magnesium pill in a high dose (800 mg daily) with no effect at all on the tics (but a whole lot of effect on the intestines; if you ever need a laxative, this is the way to go, trust me). The problem with the intestines can be avoided by using a magnesium chloride oil or creme on the skin instead of a food supplement, one says (not tried yet). As it looks like so far, the tics are not caused by a shortage of magnesium.
Incidentally, the list of symptoms associated with magnesium shortage is so inclusive that literally everyone in the world will recognize at least several thereof. I have a strong suspicion that information like that is issued by "Big Supplement" to make you believe you have a shortage and are in need of their pills.
It is suggested here and there that tics may be caused by an infection in the brain, and that therefore antibiotics are indicated. I have used antibiotics several times in my life for other reasons, and did not notice any effect on the tics.
Some recommend "natural antibiotics" like cranberry and oregano (the herb). Cranberry does not help to my experience; I have not tried oregano yet. Might oregano turn out to work, that would be magnificent, as it is effectively used as a repellent of ticks (the animals) too. One and the same herb would then provide a solution to both plagues: ticks and tics! I understand they use a lot of oregano in Italy. Come to think of it, I have never seen an Italian with tics, so there you have it. It works!