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Tourette Syndrome and OCD


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Hello Everyone

I am Catherine and I will be moderating the TS/OCD branch of the OCD:UK web site. I am very new to the whole idea of bulletin boards and have never moderated one before, so please be patient with me if I get it wrong!

To introduce myself I am 41 and have had TS since I was 10 and OCD since my teens. However, it was not until about 6 years ago that I was finally diagnosed (my fault as I tried to hide the symptoms). Some of you may have heard about Dr Hugh Rickards a neuropsychiatrist from QE 11 Hospital in Birmingham. He runs a TS clinic and was like my knight in shining armour and helped me to make sense of my thoughts and behaviours. At last someone who understood me!

I don't currently work since I had a pretty hard time during my years of work as a nurse and social work manager and had to go on long term sick leave about 4 years ago. But I still keep really busy in the form of voluntary work, looking after my nephew and being a service user representative with my local NHS Trust. In fact I keep very busy!!

Like many of my colleagues from OCD:UK I also suffer from OCD in the form of unpleasant, unwanted obsessive thoughts and too many compulsive behaviours to mention! If I can help anyone out there by sharing my experiences, then I am more than happy to do so.

Please feel to write posts on the bulletin board and I will do my best to respond quickly and thoroughly. I am not an expert on TS/OCD by any means, but I do live with it on a daily basis and spend my life trying to fight it. If we can make that fight any easier by supporting one another, then all the better.

I look forward to hearing from you.

Regards

Catherine

:-D

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  • 7 months later...
Guest dave_webster

Thanks Catherine for introducing me to this site from tsa.org.uk.

I am still working my way around all this. As my son was diagnosed I also had to admit that I had TS . It looks like my eldest daugher also has it - she is now doing a strange movement with her mouth. She has to say a goodnight ritual exactly the same each night or she gets distressed.

My problem right now is that I dont know what is my own personality and what is caused by this condition. Even simple things I now tend to attribute to a neurological condition rather than that I am naturally a bit odd.

Very occasionally I get a feeling that if I arrange something exactly so or touch something a particular way then it will avert some catastrophe. It happens only very rarely but I always assumed everyone had feelings like that. My wife says she never does.

As I have got older I have learned to control my tics. Mine is eye rolling - I learned to roll the eyes with them shut, or when they are just blinking. I get the 'tickle' but it is not noticable.

This week I was shooting a video in Zurich. I spent several hours in closeup - a Touretters nightmare. But no-one noticed (or at least said anything). Every time the cameras stopped rolling however I had to have a heavy 'eye fix'.

I have also realised that I get the urge to swear. My wife never noticed anything as the kids were in bed and there may have been something on the TV that could have prompted it. Also I have started doing a Tommy Cooper laugh from time to time.

These urges are often just below the surface. Perhaps successful control is keeping them there.

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Hi (again!) dave

I think some of the little traits you talk about are forms of compulsions, but it is perhaps helpful to think about obsessions and compulsions as being on a scale or spectrum. I guess everyone has the odd eccentricity even if it's just something like avoiding cracks on pavements or having to follow a set routine over breakfast. For most people that's fine and may even cause slight amusement or at worst, irritation. But when it comes to OCD as a 'condition', those little eccentricities have crossed over the boundary to the point they are interfering with your life, and in their extreme become extremely disabling. It sounds as though your wife is very much at the zero end of the spectrum whilst you are maybe somewhere in the middle :lol: ?

You also raise a very interesting point about 'controlling' your tics. I have to say I'm a master at that :wallbash: . Some people with TS are very open with their tics and display them freely, whilst other people are very good at suppressing them. I certainly fall into the latter category, and like yourself, will absorb myself in an activity and suppress my tics. But once that activity is over, the tics boil over like a volcano. It is a well known fact that tic suppression is possible, but at some point it all has to be discharged.

In one way I find it great that I can suppress my tics as it allows me to do things without feeling embarrassed. But on the other hand, it also means I have to face the inevitable 'overflow' when I try and relax aferwards. My theory (for what it's worth :lol: ) is that there is x amount of 'tic energy' and it can all come out steadily over a lengthy period of time, or it can be stored up during the first half of that period and really flood out during the second half. There are pros and cons to each scenario.

I'm not sure exactly where you are up to regarding your medical support/treatment, but given your family circumstances I would have thought a TS/OCD specialist should be involved?

It does all take a lot of coming to terms with, but now you've started to put a goodnetwork of support together, I hope things can only get better.

Catherine

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  • 3 weeks later...

Hi ittyk

Yes, I do supress my tics but I'm not convinced it is a particularly healthy strategy :lol: . It all started with my TS aged 9/10 and I felt very self conscious about my 'twitches' and would be laughed at and even told off ie ' Catherine just stop that twitching'. I simply found that by literally holding all the tension in (my arms, face, legs etc) I could put off the dreaded moment of ticing until I was alone. However, the flip side is that when it all came out, boy did it come :1eye: . The movements became pretty violent over the years and I've had many a cut tongue (from my jaw tics), pulled muscle and even torn ligaments. My whole body would almost convulse at times. To this day I reckon that if I'd just ticced as I needed the eventual movements would have been less severe. Basically I stored all my tics up until they spilled over and became extreme. I also stored the 'shame' of what I did (I know, 'I shouldn't feel ashamed' :blushing: ). Eventually I had a complete breakdown and told my psychologist about all my twitching and jerking. That was the turning point I guess.

In one way I suppose I'm pleased I could do all this suppressing, but if I'm honest it's really screwed me up. All those years of storing tension has had it's toll. To see me, no one ever even imagined I had TS and yet in private I had it very badly indeed.

Nowadays I stil do the same ie hold it in until I'm alone. But it is easier because I take very good medication (Sulpiride initially and now Amisulpiride). The total amount of tension is that much less and I don't very often have violent movements. I'll be honest, I wouldn't hesitate to recommend meds for TS, although it did take a couple of years to find a suitable one. They are pretty heavy duty drugs so are not always the most pleasant to take.

I have heard there is a new drug called 'Abilify' which is apparently excellent for tics, but is very hard to obtain in the UK at present. It's still under trial in the USA and is very expensive. But look out for it in your searches.

Even though I stil suppress I really wouldn't recommend it to people. It's my way of dealing with my TS but it is not without it's risks. If I'd had a diagnosis at age 9 and they'd known what they know now about TS then I think I'd have handled it differently. But you know it was over 30 years ago it started with me and it was a different cullture back then. Things were much more hidden and psychological illnesses less well understood. Teachers were less enlightened as were families. But by the time I was diagnosed, I was too set in my ways to change. But all that tension has to be discharged at some point. So I think you have to look at my strategies in context and if I had a child today with TS I would definately not want them to suppres their tics.

I might appear more 'normal' on the surface but I have to ask the question 'is that what it's all about?'

I hope this helps a bit ittyk :D

Catherine

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  • 3 months later...
Guest Felix Cat
Thanks Catherine for explaining to me.I agree with you it doesnt sound like a healthy strategy.My brother isnt able to explain to me supressing his tics as he only has a limited understanding of his conditions.

My brother was diagnosed in the 80s with tourettes syndrome he must have been about 10 or 11.However, he has never seen a TS specialist and his aspergers syndrome was not diagnosed until 1994 when he was 24.

He is not on any medication for any of his conditions as when he tried medication before for a while they did not suit him and made him like a zombie.He personally is better without any medication.

Thank-you though for explaining to me though Catherine, it helps to have yet more understanding of things he experiences which he cannot share himself.Love ittykxxxx

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Guest Antiquity

Hi Catherine :)

I've just joined the board and have an intro in the OCD section. While I swing backwards and forwards about that I'm pretty sure I have TS! I decided to look up what could be causing the tic things just over a year ago and it was such a relief to find I wasn't crazy! I didn't even know there was a milder form of it. I didn't even see that a close family member also has it even though the person is more extreme and has spitting and swearing as well. I was also surprised about being able to suppress it because I thought it wasn't possible in TS, but the description of it was soooo spot on to how I feel!

Anyway, I've had shoulder tics since I was at least 12, it could have been earlier, but I never noticed. They became worse when I went to upper school because it was stressful and I ended up having them in both shoulders and my muscles were so sore. It's weird, but only one person in my whole life has ever mentioned them. My best friend once went "Why do you do that with your shoulders?" I didn't know and it was never mentioned again.

The shoulder ones actually went last year! I was amazed! But they were replaced by eye twitches, which I have quite badly at the moment and my eyes feel tight all around them. This is worse because it's so noticable... I often worry people think I am winking at them!

As well as those I have breathing ones and have to make noises in my throat. Oh and when my shoulder one changed to my eye I also got a jaw one, which bothers me because I worry about messing it up. It can't be healthy for it to be moved around the way I do. There are others too, but they change in frequency. It's like I have the primary ones, eyes and jaw, then the secondary ones that may or may not manifest themselves as well. It's a surprise!!

My biggest worry is that my son will have it, especially as I read that men get it worse, and my family member is a man. Not that it's held him back in life or anything, he's very successful! I just feel like I'm a crazy person and I want my son to be 'normal'.

I often think about getting a proper diagnosis from the doctor for it and my OCD type thing but... well it's in my intro. Sometimes I think it would just be better if I could pour it all out to a doctor. It's nice just to be able to talk about it. I mention it a little in other places online, but not in any depth because I feel like a nutter!

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Hi Antiquity

First of all you are not a nutter :) However, I can understand you feeling this way because TS is a pretty bizarre conditon I agree! What you describe is very typical of TS symptoms. You talk about the 'waxing and waning' so characteristic of TS ie one tic will dominate then lessen or disappear only to be replaced by a tic in another part of your body. Also, the issue of suppression is an interesting one and like you I've managed to suppress my tics for periods to avoid social embarrassment. But in my experience there is a big price to pay because all that suppression is causing the muscle tension to increase and at some point it has to come out........hence my tendancy to constantly make excuses to go to the bathroom or leave somewhere early. I always found my tics were quite extreme after I'd be suppressing them. I know some people who just let their tics happen and whilst they may appear to be 'less successful' on the surface, in actual fact I've always found them to be pretty relaxed about other peoples perception of them. Good luck to them I say and I have a lot of admiration for their attitude, but it's not something that I could do personally.

One thing I would like to allay your fears about concerns the matter of your son. It is true to say that the incidence of TS is higher in males and there is a 50% chance your son could have TS. However, to the best of my knowledge there is nothing to suggest the conditon is actually worse in males. And in fact, if anything there is a tendancy for the condition to be passed on from parent to child in a milder form. So please try not to worry about this aspect, although I do understand your concerns.

Seeking treatment for my TS was the best thing I ever did and I would urge you to consider getting a medical opinion. I do take meds for my tics and they really help to 'dampen them down' :) . However it has to be a personal decision and a lot depends on the extent to which the tics are interferring with the quality of your life. I must admit, although the drug I'm on now is terrific, it did take a couple of years trial and error to find the right one for me. Some of them can be a wee bit sedating and you may not want to go down that route. But I did find it helpful just to get it all off my chest and have done a lot of 'coming to terms' with my TS which has greatly helped.

Thanks for posting and do feel free to get it all out on this forum if you find it helps.........just so long as you forget any ideas of being a nutter :tongue:

Take care

Catherine :)

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Guest Antiquity

One thing I would like to allay your fears about concerns the matter of your son. It is true to say that the incidence of TS is higher in males and there is a 50% chance your son could have TS. However, to the best of my knowledge there is nothing to suggest the conditon is actually worse in males. And in fact, if anything there is a tendancy for the condition to be passed on from parent to child in a milder form. So please try not to worry about this aspect, although I do understand your concerns.

That's a relief! I must have mixed it up with there being a higher incidence in males.

Seeking treatment for my TS was the best thing I ever did and I would urge you to consider getting a medical opinion. I do take meds for my tics and they really help to 'dampen them down' :thumbup: . However it has to be a personal decision and a lot depends on the extent to which the tics are interferring with the quality of your life. I must admit, although the drug I'm on now is terrific, it did take a couple of years trial and error to find the right one for me. Some of them can be a wee bit sedating and you may not want to go down that route. But I did find it helpful just to get it all off my chest and have done a lot of 'coming to terms' with my TS which has greatly helped.

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I don't think they interfere too much... well not to the extent that I would want to cope with having to live every day with the fear of side effects from pills which is a constant obsession with me!

Though some times it would be nice to be without them especially when they're all here.

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Hi Antiquity

The meds option is a very difficult dilemma to advise on :hug:

Now I wouldn't be without my medication, but when I think back to the 2 years of trying out new drugs it was pretty awful. I would also advise any drugs being prescribed by a TS specialist as they are much more in touch with med issues than a general psychiatrist or neurologist.

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