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Hello from a Newly Diagnosed Oldie

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  • Hello from a Newly Diagnosed Oldie

    Hi, I'm nearly 57 and a mother of three young adult children and and have recently been diagnosed with mild TS (or more accurately my neurologist conceded I had TS after I described my symptoms as I wasn't ticcing at the time) and although I hail from a part of down under where TS patients have little access to support or medical personnel with a special interest in TS, I thought I'd check into your forum and share my experiences and to see what kind of advice people from your part of the world would get in my situation.

    I first started getting facial tics at age 6. They were quite mild, but came and went throughout my primary school years along with a few minor twitches (chest, abs, thighs, calves, shoulders, arms). My mum would tell me to stop blinking, but no one noticed the body twitches so I kept quiet about those, realizing at that young age that if they my mum didn't like the face twitches she certainly wasn't going to like the body twitches I can barely remember having phonic tics as I think they must have been quite subtle and no one ever commented on them. My cousin remembers me making clicking noises, but neither of us can remember if they were voluntary or not or how long they lasted. But I do remember that whenever I got excited, I got so overwhelmed, I would make a walrus noise, and there was no stopping it. At school, I suffered from social anxiety and was considered a bit of a weird, eccentric kid, with nerdy inclinations (though I don't think I ticced that often in primary school) and drifted from friend to friend and got excluded from a lot of things. As a result I retreated into books, with an obsession for science fiction and popular science. I also liked to write journals, but hated writing by hand (although I had good fine motor skills and liked doing embroidery, but often didn't finish things) as I had trouble organizing my work until, at the age of 14, I begged my parents to buy me a typewriter and after that I organized myself by literally cutting and pasting. I used to type out journals and bits of fiction, but got so hooked on rhyming couplets that I perfected the art of doggerel, but fortunately grew out of that habit.

    Anyhow, the tics weren't a huge problem till I hit puberty a little after 14. Then they increased and I'd be blinking, grimacing, frowning, sniffing, giving my face a thorough workout in waxing and waning bursts every few hours. People noticed, commented. My mother took me to an old GP and I was told it was a nervous *habit* that I would grow out of. I was totally horrified to hear that I should develop a habit with the potential to cause me ridicule at school, so for the rest of my life I refused to talk to anyone about it again, ever. After that I went from being the dux of lower high school and became the "lazy, annoying kid", dropped out, got a job, did some traveling and escaped into the world of science fiction.

    During my teen years, I believed my tics were a habit because I had some control over them. I could postpone them for a while, but the minute I stopped thinking about postponing them, they'd escape. I'd always get cross at myself when this happened, not understanding why I'd want to perpetuate a habit that seemed so self-destructive.

    As I grew older, I grew out of my social anxiety and became a nurse and looked up medical books for reasons why people ticced. I even found an entry on tourette's but it only described severe symptoms and seeing as I didn't have coprolalia, I decided I wasn't in that category. I also learned about Chronic Tic syndrome, saw the drugs being used to treat it and decided I didn't want to go there. At this stage I was getting a little more control over my tics and could postpone a lot of them for a good hour, but when I got tired some would leak out. This was in the 1970s and I remember one intern on a ward I worked on called me 'blinky'. Sheesh! You'd think he'd know better! And sometimes I'd get the shakes and I still do, and it just seems to happen for no reason eg, I'm not cold or afraid or stressed or anxious. I could be happily talking to someone and I just start shivering as if I'm cold. I'm beginning to suspect it's because I'm holding in too many tics (but I'll get to that later). Anyhow an intern caught me shivering and asked me if I had the DTs. I still get mad thinking about it. Like seriously, here I was immersed in the medical profession and...well I was still being treated like the odd kid at school...no wonder I used to get home and feel like raging.

    But the need to rage scared me, so in the end, meditation and self help books helped me control that anger.

    But eventually I had to give up nursing because of all the constant interruptions and buzzers and phones got to me. I hate too much noise. I can't sleep if there's noise around. I hate noisy shopping centres and discos, but I love conversing with people and hiking in the wild. Before I go to bed I have to make sure the wooden blinds aren't going to rattle, and that every door is oiled and every little rattle is stopped. It comes in handy if there is a prowler because I hear them going over the side fence no matter what time of night it is (has happened twice). Plus aside from the noise of working on busy hospital wards, I like to do my work without interruptions. I like to focus on one thing at a time.

    By the time I reached 30 i had great control over my tics and because I've lived in several different cities, I have new friends and not many have ever seen so much of a twitch out of me (well, if they did, they're too kind to say). Then I met my husband, gave birth to three beautiful children and when my 4 year developed transient tics, I was afraid she was copying me so decided I was going to have to force myself to stop ticcing in private as well as public. So that's been my struggle over the past twenty something years -- to keep my tics inside me forever. Not possible of course. In the mornings I'd be okay, then by the afternoons, they'd start leaking out. In the evenings, I'd get twitchy so I'd develop strategies to hide them, turn away so the kids didn't see them, cover my face, that sort of thing. Then when I got into bed at night, I'd have to do something like 30 to 50 facial tics before I could get to sleep.

    I probably would have gone on like that forever (flash back twenty something years again)if it wasn't for the fact that at 34, I started getting migraines. Never had them before, and then suddenly wham, I had no idea what hit me. They seemed to be timed with my monthlies so I blamed hormones, and they were the worst things ever that have plagued me for years, resistant to all treatment. But I've fought the things as relentlessly as I've fought my tics.

    I'm wondering now if my migraines are related to my tics or the way I suppress them all the time or if they're just a co-morbidity of TS. The doctors over here don't seem to see a connection.

    Anyhow, despite the migraines, when my children started school, I went to uni and studied part time for a BA in English (my dream) went on to get honours. I earned a scholarship to do a PhD which I'm just finishing off now, but has now unfortunately stopped for two reasons. 1. Migraines. 2. Medications.

    When the migraines got so frequent I couldn't function, I was put on Topamax, an anti-convulsant which is a common treatment for migraine. The GP had me on a 100mg a day dose (which turns out is a bit high for me as I'm not very heavy) and the first thing I noticed was that within a week most of my tics weren't happening any more. And the ones that were left were much easier to control. This was when the penny dropped and I realized that my Tics were definitely not a habit. To be honest I'm angry to say the least that it had to take so long. Firstly that my migraines were undertreated for so long. And secondly. TS undiagnosed for 50 years!!!!! Seriously???

    I'd worked for 15 years in the medical profession. Yet I didn't know. I've also read a *lot* of fiction, everything from Tolstoy to Dickens to Asimov to Tolkien and Rand. And pretty much every representation I'd ever seen of facial tics of any kind had been shown in negative way, using them to portray weak characters, wicked characters, emotional weaknesses, humour, ridicule. Looking back now, whenever I saw a facial tic in fiction, I would cringe. Especially as a child. No wonder I closed my mind to it.

    Anyhow, back to the now. The topamax, didn't agree with me. It gave me a bit of cognitive dysfunction, I kept losing words, couldn't finish my PhD, even got me depressed (now I know how *real* anxiety feels) so I've reduced the dose to 50mg. Now, a few weeks later, my migraines are significantly reduced, and my tics are kind of back (all the same old facial and body ones that have stuck with me all my life) but slightly less than before I started taking it (I think). Not that I mind. Now that I know the cause is neurological I feel empowered. I am what I am. If someone comments on my tics, I'll lecture them on TS. I even plan to spread TS awareness in my city once this PhD is done. Plus I'm not going to try to hold my tics back in private any more. Or at home. Or when I'm walking my dog.

    Though after all these years, I'm realizing with irony that my habit has not been to tic, but to hold in my tics. I don't think I'll ever be able to break the habit of not ticcing in company of friends. Though if I do, I'll not be embarrassed about it any more. I'll admit it for what it is.

    I've noticed also that maybe I do have a couple of subtle phonic tics left over from being a kid. I have this cough that comes and goes. No cause. i don't smoke. I don't have asthma, am not sick. I just cough. Some days I'll do it over a few hours and then stop. Some days I don't. Maybe it's a tic, maybe not. I remember a few years back, it annoyed me so much I took a few days of three times a day puffing of my son's ventolin to see if it was asthma. No effect. And sometimes I mimic the phone ;) Plus when I do the screw up my nose thing, it feels darn good to accompany it with a sniff. And I love counting things that I see in my head. Things like windows in houses, and patterns in architecture, and train carriages, cake decorations etc.. Argh......drives me bats!

    And when I'm overtired, or migrainy, just as I'm about to drop off to sleep I suddenly and very quietly say the word "ommmm" or sometimes "ummmm". I'll do this whole thing 3 to 6 times before falling asleep. Don't know if that's a tic or not. But I do get that falling feeling pretty much every night when I'm trying to sleep and lots of twitches, so falling asleep is always hard.

    On the positive side, I've always been good with language. I love creative writing and rarely tic when I'm doing this. I speak a little mandarin and my strength was the ability to mimic the tones and sound like a local when I made hotel bookings over the phone when I lived in China. Not sure if TS helped with that.

    As for my kids, they all seem to have bits of me in them. My eldest daughter had transient tics at 6 and 15 but grew out of them. She's very artistic, but perfectionist, is getting over mild depression, had night terrors for 3 years from age 3, is a little OCD in that she's very perfectionist and when she's watching TV she writes certain words with her finger over and over on her hand. My second daughter is also getting over anxiety and depression. My son had transient tics at 6 and 15 but grew out of them. He also used to get night terrors and also sleep walks, but only when he is sick. My brother had social anxiety and learning difficulties as a child and developed a chronic eye tic later in life. I've told my doctors about these, but they do not think it is significant in our family history, but I'm worried about what this means for my children and their future children. What advice would you be given in Canada?

    Sorry this has been such a long post. But it's rare to get to speak with people who understand,

    Bests,C
    PS (Excuse Australian spelling )
    Last edited by sirius2canopus; August 25, 2012, 12:31 AM.

  • #2
    Re: Hello from a Newly Diagnosed Oldie

    Hello C and welcome to the Forum!

    I too was diagnosed late in life and can relate to many of the feelings you might be experiencing. The relief comes in knowing what we previously thought were "habits" as you pointed out, suggesting some kind of character deficiency, are actually involuntary neurological manifestations.

    I'm wondering now if my migraines are related to my tics or the way I suppress them all the time or if they're just a co-morbidity of TS. The doctors over here don't seem to see a connection.
    Coincidentally I too have had migraines all my life, but there does not appear to be any clear evidence of a link between Tourette and migraine.

    Success in treating migraine for me came when my doctor prescribed one of the triptans, a class of migraine specific medications which essentially abort the migraine.

    It sounds like you have dealt with your situation quite well, despite not being formally diagnosed until now.

    The benefit of a clear diagnosis is that you can share this information with your children, so that information can be passed along to future generations. That knowledge should help grand kids and their parents understand any genetic influences that might affect any learning, attention or even movement irregularities.

    Hope you will find our Forum informative. Your insights will certainly be helpful to our members!
    Steve

    Dum spiro spero....While I breathe, I hope

    Tourette Canada Homepage
    If you enjoy the TC Forum, please consider a Tourette Canada membership
    Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

    Comment


    • #3
      Re: Hello from a Newly Diagnosed Oldie

      Hi Steve,

      Great to hear from you.

      >The benefit of a clear diagnosis is that you can share this information with your children

      Yes, it's reassuring to know that future generations of my family will have knowledge to help them. When I compare what is known now with what I had access to at school, it's like stepping out of the dark ages.

      I only wish I could fix the migraines so easily.

      > Success in treating migraine for me came when my doctor prescribed one of the triptans

      Unfortunately, I've been on triptans for a few years Before being prescribed Sumatriptan, my migraines would last for 2 days if I only took paracetamol or aspirin. On the prescribed dose of Sumatriptan, some of my migraine pain would come back along with some nausea and light sensitivity after 24 hours. I started Topomax when I started getting 3 migraines a week. Now I'm only getting a migraine every two to three weeks on 50mg daily of Topomax. When I get the beginnings of a migraine, I take an Eletriptan and I seem to only get a niggle of a returning headache and slight nausea on the second day. I could probably take twice the dose I'm on, but I'm always worried about rebound headaches as I think I got some of those on the Immigran. Or maybe I didn't, because a few times when I didn't take a Sumatriptan, thinking I had a rebound headache instead of a migraine, it turned out I had a migraine and there was nothing I could do about it because it was too late! It's a real juggling act. Dreadful way to live.

      > It sounds like you have dealt with your situation quite well, despite not being formally diagnosed until now.


      It was a bumpy road at first, and still can be sometimes, but I'm stubborn by nature, so I guess that helped I find though that my head is clearest if I stay away from caffeine, junk food and alcohol and eat healthy and go for a walk an hour a day rain or shine. In the past it kept the migraines to the minimum as well, but earlier this year nothing seemed to help.

      >Hope you will find our Forum informative. Your insights will certainly be helpful to our members!

      Thank you. It's great to know at last that I'm not alone. I've read a few peer reviewed papers on TS from journals I've found on the internet and the library and was a little concerned at how some of them had such a small number of cohorts in studies of a disorder that manifests in so many different ways and degrees. I suppose these things take time and funding to cover the full spectrum (and so many things need funding) though I'm not a medical doctor so I guess I'll just have to be patient, but I'm naturally curious and....stubborn.... and always looking for answers outside of the usual envelope. If my experiences with TS as a mild sufferer can be of any help to anyone, I'm always happy to share and spread the word,

      Cheers,
      Carol.

      Comment


      • #4
        Re: Hello from a Newly Diagnosed Oldie

        When I compare what is known now with what I had access to at school, it's like stepping out of the dark ages.
        Agreed! Those of us who lived through the era prior to the National Tourette awareness organizations endured unimaginable ignorance.

        If my experiences with TS as a mild sufferer can be of any help to anyone
        Your experience as a person with Tourette will certainly be of value in providing support and encouragement to others.

        Sumatriptan
        As I am sure you know, sumatriptan Imitrex was the first of the triptans, and several other compounds have been developed since then. In my own experience, I soon developed a tolerance to Imitrex, and began experiencing failures in relief more than half the time. My doctor switched to a different compound, which I need several times a month, and enjoy effectiveness virtually 100% of the time.

        We maintain a section dedicated to migraine on our sister Forum, Psychlinks you might find informative HERE.
        Steve

        Dum spiro spero....While I breathe, I hope

        Tourette Canada Homepage
        If you enjoy the TC Forum, please consider a Tourette Canada membership
        Please visit our sister Forum: Psychlinks Psychology and Mental Health Support Forum

        Comment


        • #5
          Re: Hello from a Newly Diagnosed Oldie

          Hi Steve,

          >Your experience as a person with Tourette

          Ah, yes, that is a much more positive description of myself. I shall use that from now on

          >In my own experience, I soon developed a tolerance to Imitrex

          No one has suggested to me the idea of tolerance to Imitrex before. Interesting. Thanks for the link to the migraine forum. I'll certainly look that up.

          Cheers,
          carol.

          Comment

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