Long term sufferer

[deano595]

I am 36 years old and have had ts since I was a teenager, I first started out coughing and gradually I started to grunt as well. My friend says he's heard of some type of medication, which I could really use because it's alienating me as people don't understand. What's worse is that it is very very frustrating for me and I keep getting told by other people it's just a habit. I really wish it was just a habit cuz I would give it up in a heartbeat like people give up smoking or eating junk food but this is much deeper than that any way let me know if it sounds familiar and if any body knows what medications are available for my condition thanks.

[Carolbale]

Hi Josh has used several meds since age of 7 ! Haluperidol , resperidone and clonadinealsi know as dixeritt which he is still on now. They have all helped to a degree uovto 70-80 per event decrease in Tics !!! Look up Tourettes adult clinic fur 16 plus in Queen Elizabeth Hopital Nurolology clinic . Dr Richards is amazing along with Dr Cavanahh who trained under him .

[deano595 in reply to Carolbale]

Thank you for getting back to me, I will have a look at the information you gave me, thanks again.

[alexfrombath in reply to deano595]

I highly recommend Dr Cavanna, based at the Barberry centre at the QE hospital in Brum, too.

They can at least point you in the right direction if they aren't able to see you themselves. However, be prepared for a long wait, it is a very specialised field and there are not that many Tourette's clinics in the UK.

Your GP should be able to refer you to your local Neurology team (most likely based at a hospital outpatients department). Even if they don't specialise in tics or movement disorders themselves, they can generally refer to on your the right people!

Hope this is some help, and just remember - as trite as it may sound - you are not alone.

[deano595 in reply to alexfrombath]

Thank you for taking the time to get back to me, I will look into the advice thank you.

[rickcricow]

I am an adult, 64, with TS. I was diagnosed when I was 25 and have had it since I was a child.

I avoided medicine until about 5 years ago. I now take tetrabenazine. My TS was strong enough to damage my neck, and I'm trying to avoid a neck fusion...which likely won't work because without the tetra, my neck twists around constantly and I'd tear the fusion out.

Tetrabenazine is a really hard medicine to take. I take 3 other drugs to counter the side effects. I take an anti-depressant (never needed one before), anti-anxiety drug (again, never needed) and an amphetamine to maintain my energy. Even so, I sleep 10+ hours per night.

I wish I could go off the tetra, but really can't at this point. It works, it has almost stopped my TS, but it is hard.

If you want to 'chat', you can email me rick(at)cricow.com.

Good luck, Rick

[Eadweard]

Tics with neck ache are a nightmare. However, it does mean I make sure I'm never hungover as that's hell!

Sleeping all my spare time away.

[gavsmom]

There is a blood pressure medicine that works for many people with Tourettes. I don't remember its name.

[Eadweard in reply to gavsmom]

Clonidine lowers blood pressure, it may be that.