I've always found the the absolute best way to learn about Tourette's is to talk to other Touretters.
They tend to know or reveal things about the condition that no-one knows yet (at least not officially).
Talking to other Touretters in the
BrainChat
forum, in the club
CW_TS
and in some
Facebook groups, I discovered that Tourette syndrome appears to be more than just tics.
There are other "symptoms" of the condition which seem to be
reasonably common within the Tourette population.
Polydipsia - Excessive water drinking
People with Tourette syndrome polydipsia can drink 10 litres of water a day. Toilet trips are very frequent. It is believed that
the low serotonin levels in Tourette's is to blame. Lowered serotonin levels can lead to lowered vasopressin levels. Vasopressin (also known as ADH)
regulates the amount of water that a person expells. The higher the levels of ADH, the less a person will urinate, and the higher the levels of water are in the body. So people with Tourette syndrome drink so much because they are losing a huge amount of water in urine, sweat and in exhaling and they need to make up the loss.
A couple of people, over the years, have mentioned to me that they have low blood pressure.
According to the encyclopaedia website
health.allrefer.com;
(ADH) has the effect of decreasing the plasma
concentration, increasing blood volume and increasing blood pressure.
This means that low ADH levels (as in Tourette's) would cause lower blood pressure. This may explain why many Tourette drugs raise blood pressure,
when they "normalize" brain chemistry they may effect ADH levels as well.
Sensitivity to heat
This topic is apparently discussed in Dr Comings book
Tourette syndrome and human behaviour. With this symptom, the person is always warm. In hot weather, the person boils, in cold weather they wear much less heavy clothing than would be expected. No theories were offered as to
why this happens, but one person guessed that their body temperature was actually lower than the norm.
I haven't found anything yet to suggest this is the case, but
my theory is this is to do with norepinephrine, the derivative of dopamine. Norepinephrine is used to trigger off the fight or flight response in humans. One of the effects of fight or flight is that the heart rate increases. This heats the body as the warmer blood from the centre of the body reaches the extremities at a higher temperature, trapping the heat in the centre. The excess work of the heart and the excess sugars burnt during this response also heat up the body considerably. We can see this you tend to sweat after exercise or a fright. In Tourette syndrome the levels of norepinephrine in the system are lower than normal*. This means we are burning sugar slower and in many cases our heart is beating slower than the norm.
*Please note: This is not a mistake. The levels of norepinephrine in the system (body) are lower in TSers, the levels in the brain, however, are higher.
Between the brain and the body is a layer called the blood-brain barrier. (Clever with the names aren't they!) this layer lets small things (like oxygen and iron) pass between the brain and the body, but prevents larger things (like serotonin and norepinephrine) from getting through. This is why you can have two different levels of a chemical in the one body.
This temperature theory has recently been reinforced to me by a side effect of the antipsychotic Ablify. Ablify is a dopamine antagonist, and
listed as one of its side effects is changes in the body's core temperature.
Also, if a low amount of serotonin hits the 5HT2 receptors, the body is less able to cope with stress.You are more likely to react badly to temperature changes.
Tactile hypersensitivity
About 40% of the Touretters surveyed mentioned they had this symptom. Some of them couldn't stand the feel of hair on their skin. Most cannot wear synthetic material or wool. Pure cotton undergarments seem to be the only acceptable alternative and some of women go bra-less because they are too uncomfortable otherwise. There seems a higher than normal level of allergies to things like detergents and cheap metal jewellery. Even the
thoughtof touching chalk makes some of them squirm. Often a person with this symptom will feel suddenly itchy all over, for no discernable reason. This itchiness can be triggered by watching/seeing a biting insect, seeing someone else scratch, and even talking about scratching or itches.
Because it it so suggestible, I have come up with a theory for why this happens. I believe this is a kind of 'reverse tic'.
It is known that tics are
contagious and that they can be started or worsened just by mentioning them. I suggested before that tics are caused by the small "housecleaning" impulses sent around the brain being amplified at each synapse by the extra dopamine receptors until they are strong enough to turn into an action. I think a similar thing happens with Tactile hypersensitivity, but in reverse.
The human body is covered in hair, most of it thin and blonde. In our ancestors this hair was probably used as protection from the elements. But as we've evolved it has taken on a different purpose, the detection of pressure. All over the skin there are nerves that measure pressure. On some places, like the tips of the fingers, there are millions of them every square centimetre. However on other places, like the back, there is only one
per square centimetre. Instead of using nerve endings, which are very precise, to measure pressure on such a large area, they use hairs. Wrapped around the root of each hair is a nerve that notices when the hair is moved. It then sends a message to the brain stating that its hair has moved and the brain uses this information, subconsciously, to build a picture of the body's surroundings. It is subconscious
because, if we could feel every time a hair on our body moved, we wouldn't have the mental capacity for thought or movement.
My theory is that, in people with Tactile hypersensitivity, sometimes these messages are amplified by the extra dopamine receptors in the same way as tics are. When it has been strengthened enough it "breaks through the barrier" between subconscious and conscious and you become aware of the movement.
And, in the same way thinking about tics reinforces and strengthens the tic pathways, thinking or talking about itchiness will make it easier for that amplification to take place.
If you doubt that hair movement can cause all over itchiness, try this experiment: Take a toothpick or matchstick and, in a place with no wind, choose a single arm hair and lift it up bending it against the natural direction of the hair. Then imagine that feeling happening, not for a fraction of a second, but for a couple of minutes. Also imagine that, instead of one hair, it's every hair on your body. Makes you want to scratch doesn't it?!
Weight issues
Many people have told me that they have weight issues. This didn't surprise me; Low levels of serotonin are known to cause increased appetite and cravings for fatty foods. (The cravings are an attempt to raise serotonin levels using the proteins to manufacture more, but this is a very inefficient way of doing it and you'd have to eat heaps!) So I've always expected that Touretters would have a propensity for being obese. But to my complete shock the vast majority of Touretters I talked with were excessively thin. So much so that a couple of them, if offered a cure for Tourette's or a way to put on weight would choose to gain weight.
Through the upbeat page
TS is fun I found my way to an article from the journal
SCIENCE 283 (5399)pp184 from the 8th of January 1999. The article is titled
Beyond Sloth--Physical Activity and Weight Gain and is by Eric Ravussin and Elliot Danforth jnr. The study attempts to find out why, in times of plenty, some people become obese and some don't. The study found two things:
- The fidgetiness of an individual plays a larger role in daily energy expenditure than previously thought.
This is the conclusion that the newspaper article quoted on the TS is Fun website runs with. It has been found that fidgeting accounts for an average energy expenditure of 348 kcal/day (range 100 to 700 kcal/day). To put that into perspective, an average sized person burns up about 300 calories on a one kilometre run. So just by fidgeting you can burn the equivalent of an 100km run a day!!
The actual study from science, however, suggests that the study is a bit flawed. You can say that fidgeting plays a part in weight loss, but how much of a part is not yet clear.
- Overfeeding activates the sympathetic nervous system. This in turn causes energy to be "wasted" and converted to heat
This was not mentioned by the journal, but may well be the main reason why many Touretters are excessively light. As discussed in another section of this site Touretters in general appear to have higher levels of norepinephrine than normal. Norepinephrine is one of the trigger hormones that activate the sympathetic nervous system. So perhaps one of the reasons Touretters can be so thin is because a large amount of what they eat is being classed as unnecessary and is burnt off.
Both of these theories are quite well supported by the fact that many Tourette syndrome drugs cause weight gain. So whatever is keeping the
weight off is altered by the medication.