Waxing and waning

[LittleClapham]

Have you ever heard of Stockholm syndrome? More commonly it is used to describe people's emotional attachment to their captors in the case of a hostage situation. The way I see it, Tourettes is holding me hostage and I have bizarrely grown to like it. Not like it in the sense of enjoying it, but kind of accepting it is part of who I am. So when my tics practically disappeared a couple of months back, I started to miss it! This isn't the first time I have had a waning period so strong that I have gone back to the simple, mild tics that I had as a child (some days you couldn't even tell I had TS), it has happened about three times now. Each time I have started to miss it, but inevitably the waning period eventually stops and my tics come back as severe and annoying as before! Strangely during my waxing period, the opposite feelings occur. I ask why am I cursed with this? I hate Tourettes, I want it to go away! It's bizarre how emotions can work.

It's been sneaking back the past week or two. The urges have returned, especially the one to smack my head against hard surfaces. A few days back, the urge became reality and now I am wearing my helmet (got a nice new one that looks less like Kryten from Red Dwarf though!) to protect from the almost constant assaults from my own brain! It also helps with the sudden drop attacks I have, but no one knows what that is yet. The funny thing is that my vocal tics aren't as... loud... so it sounds like I am speaking albeit in a childish voice. I nearly wet myself laughing this morning as I quite calmly said 'Put it in the attic, there's a fish in the tumble dryer'. Other common tics at the moment are making a noise like Chewbacca from Star Wars (graaaaagh), imitating a train horn and repeating no..n...n...n...n...no...no...no...n for ages! Physically I am still doing fairly well, presumably due to the baclofen. I really notice if I haven't taken a dose because my back doubles over into spasms and all my dystonic tics return. Although it wasn't intended to help with anything other than the dystonic tics, the lack of agonising pain seems to have improved my tics in general.

Also I now have regular internet access so hopefully I will be blogging more often (yaay)

[Seonaid Tourettes Action]

Thank you for sharing your thoughts this morning. It’s so interesting you describe you almost missing your tics during the waning periods you have. Can you think of any possible reason for them waning? Is there less stress in your life during these periods or does there seem to be no reason for tics waning? I think sharing these kinds of experiences emphasises why forums like Health Unlocked are so important as others may be experiencing the same kinds of thing and perhaps feeling they are the only one! Thank you again.

Seonaid

Tourettes Action

[LittleClapham in reply to Seonaid]

I have no idea why they are waning! I've been through serious stress over the past year which usually makes things worse!

[scorpiodog]

before i accepted tourettes in my life the waning periods even as a small child were fantastic but also stressfull as i knew the tics would return anytime

now i have accepted my tourettes i do miss my tics during a waning period but like you say you dont miss them in a good way its just they leave a bit of a hole

ive found though even if my tics are right down there is always a lurking tic normally my eye tic but at the moment its my neck tic thats the lurker.

and the thought of tics still float in and out of my mind

my tic free periods are less often than in the past and they just leave way for my co morbs to jump in and my intrusive thoughts take over so maybe i miss my tics because they leave less room in my head for co morbs