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Thread: I'm a Touretter with 3 other disorders, just wanted to join this forum

  1. #1
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    Question I'm a Touretter with 3 other disorders, just wanted to join this forum

    hi, I'm Peter Locke, from Calgary, AB, Canada.. I am a 22-year-old man living with Tourettes, Aspergers, OCD and ADHD (all officially diagnosed) and i wanted to join this forum cuz my mom did and it sounded good. I'm a music composer, milkshake drinker, dog-lover and fighting-videogame-fan (street fighter ftw!). I live with my parents Bill and Laura.

    Medical History:
    I've tried a lot of treatments and medications and therapies etc., and only two medications have ever really helped me consistently: Risperidone, and Clomipromine. I've been trying to get off of them for many years because of their bad long-term side-effects but nothing else has been a suitable replacement... I used to do some alternative medicine at the behest of my dad who is very open-minded towards it but i personally don't like alternative medicine anymore that much... i'm very critical and untrustworthy towards alternative medicine as well as pretty much everything in my life including my own thoughts and my own experiences... i'm also very depressed a lot of the time these days and many times in the past.

    I'm currently trying a Fisher Wallace machine to reduce my symptoms, which is also sorta at the behest of my dad but it's hard to tell if it's alternative medicine or not... we showed the machine to our doctor and he thought it was worth a try, so maybe it'll work, i dunno...

    I just got off of Haldol... Haldol didn't help at all... it just made me hyperactive and ticcy all the time to the point that i couldn't lay down or sit down most of the time... after getting off of it I STILL feel a little hyper ticcy so it almost feels like the Haldol permanently wrecked my brain or something... but hopefully not...


    Sorry if this is a bit long... i'm at the end of my rope and my parents are also at the end of their respective ropes and, i mean, maybe that's not relevant but i'm sure some of you guys might have suggestions... and anyways i wanted to give some context... hopefully i can find some friends at this forum... i hope i'm not breaking any rules here.... i'm sorry if i am... please calmly explain to me what rules i broke if i broke any... sorry... thanks
    Last edited by UncleBibby; June 15, 2014 at 10:24 PM. Reason: a reference was unclear

  2. #2
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    Hi UncleBibby!

    Not breaking any rules! Not making anyone angry! Welcome to the forum!

    I had never heard of the Fisher Wallace device, had to go look it up, and, yeah, it looks kind of alternative. But also interesting. Can you explain what it feels like when you're using it? And which symptoms you feel that it helps.

    You say you were taking Haldol and it wasn't helping you, so you quit recently and hope your brain isn't "permanently wrecked". (Probably not!) How long had you been taking it? Did your doctor give you any indication of how long it might take for the side effects to go away?

    Well, I'm glad you came and posted here. You'll learn a lot about Tourette.

    Oh, that's a funny user name you picked!

    Twidget

  3. #3
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    Hello Peter and welcome to the Forum! As Twidget has expalned, your post is perfectly fine and I wonder why you might have thought there was a Forum rule issue.

    Thank you for sharing your story, and I hope you will find the information and support you need, as well as make a few new friends.

    What kind of music do you write? And please tell us more about the Fisher Wallace machine...I have not heard of it either.

    Thanks to yur Mom for pointing you in our direction.

    Enjoy the Forum and let us know how we can help.

  4. #4
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    Hi Peter!
    Welcome to the community.

    I've tried a lot of treatments and medications and therapies etc., and only two medications have ever really helped me consistently: Risperidone, and Clomipromine. I've been trying to get off of them for many years because of their bad long-term side-effects but nothing else has been a suitable replacement...

    What is the specific benefit that you are getting from these medications? If you can identify what the meds are doing that you like, you might be able to figure out what alternative treatments or therapies are available for them.

    I used to do some alternative medicine at the behest of my dad who is very open-minded towards it but i personally don't like alternative medicine anymore that much... i'm very critical and untrustworthy towards alternative medicine as well as pretty much everything in my life including my own thoughts and my own experiences...
    I don't think much of alternative medicine either. But that does not mean that all of them are useless, many drugs come from traditional remedies and such. To me the alternative means "untested by double-blind clinical trial", and some of them have been tested and become medicine. After testing it's just medicine.

    i'm also very depressed a lot of the time these days and many times in the past.
    That's less TS and more everything. Gook luck with that.

    I'm currently trying a Fisher Wallace machine to reduce my symptoms, which is also sorta at the behest of my dad but it's hard to tell if it's alternative medicine or not... we showed the machine to our doctor and he thought it was worth a try, so maybe it'll work, i dunno...
    The Fisher Wallace stimulator is based on some real science. It's a trans-cranial stimulator and there are many areas in brain science where TMS is useful as both a way to alter and measure function in basic research, and to try to alter activity for therapy. I would not consider such a thing "alternative medicine", but you should confer with a doctor that knows something about the TMS research or can look it up to make sure you are using it in ways that will help.

    I just got off of Haldol... Haldol didn't help at all... it just made me hyperactive and ticcy all the time to the point that i couldn't lay down or sit down most of the time... after getting off of it I STILL feel a little hyper ticcy so it almost feels like the Haldol permanently wrecked my brain or something... but hopefully not...
    It's often a matter of "picking your poison" with medication and the best way to approach one is like they are training wheels. Each of them will do a blunt, global change in brain function and the hope is that they will turn something up that you can learn to recognize and manipulate by yourself eventually, or they will turn something down that is too overwhelming to deal with at the original intensity with the hopes that some control with medication will make it easier to master control without it eventually. Medication is best as a way of creating a scaffold of control that can be maintained by behavior and habit later.

    Sorry if this is a bit long... i'm at the end of my rope and my parents are also at the end of their respective ropes and, i mean, maybe that's not relevant but i'm sure some of you guys might have suggestions... and anyways i wanted to give some context... hopefully i can find some friends at this forum... i hope i'm not breaking any rules here.... i'm sorry if i am... please calmly explain to me what rules i broke if i broke any... sorry... thanks
    No problem. I don't see any rule problems. The only way that people can figure out things like this is often to talk to others about it. You get to put your ideas out there as objects that you can think about with others, instead of just being in your head where they just run in circles. Too many on the internet are unreasonably rude about people talking about their problems.

  5. #5
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    wow! so many replies, so fast! that's cool...
    to answer some of your questions:
    When i use the fisher wallace machine it just feels like a tiny, almost unnoticeable tingle where the two sponges are applied. also, when i use it and i close my eyes, i can see little flashes of light on the edges of my vision. i've heard that this is normal for using the fisher wallace. In terms of how it might be helping me, i think mostly it just sort of calms me down... helps me relax a little bit...

    I took Haldol for 6 weeks or so, and the doctor said it should have been helping by that point and it wasn't, so he agreed i could go off of it. he had assumed the side effects would've gone away by then. he was especially concerned that i was STILL feeling hyper and ticcy and stuff.

    about the music i write... well, it's mostly instrumental electronic music... sometimes it's a bit videogamey-sounding cuz that's the kind of music i grew up listening to. if i'm allowed to post a link or two, here's where you can find my music:
    UncleBibby47's comments on SoundCloud - Hear the world’s sounds

    that's my newer soundcloud account, but i also have an older one which is more of my retro chiptune stuff:
    UncleBibby's sets on SoundCloud - Hear the world’s sounds


    about what my risperidone and clomipramine was doing, i think the main things they were doing that other medicines couldn't do as reliably were:
    helping me not get angry as much
    helping me feel less depressed
    reducing the frequency and velocity of my tics
    helping me be able to handle stressful situations
    stuff like that.

    I'm happily surprised you guys are so polite... i'm very grateful that you're not put off by the negativity in my first post and are taking me seriously and stuff... i've been to some forums where you gotta be SO careful what you say or you get insulted or made fun of or banned... thanks.

  6. #6
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    i've been to some forums where you gotta be SO careful what you say or you get insulted or made fun of or banned...
    Now I understand the reason for your concern, Peter. Well, I'm pleased to say this Forum is not like that. Everyone is treated with the utmost respect and everyone's views are welcome. We may disagree, but always in a respectful manner.

    Our Forum is governed by the rules that have been approved by the Board of Directors of the Tourette Syndrome Foundation of Canada, and our volunteer moderators ensure the rules are adhered to, thereby providing a safe and courteous venue for people interested in Tourette and associated disorders to find information and support.

    Thanks for the links to your music, and for the interesting feedback on the Fisher Wallace device.

    How do you spend your days? Are you studying, employed or in training?

  7. #7
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    I'm happily surprised you guys are so polite... i'm very grateful that you're not put off by the negativity in my first post and are taking me seriously and stuff... i've been to some forums where you gotta be SO careful what you say or you get insulted or made fun of or banned... thanks.
    It's understandable unfortunately. There is a lot of sensitivity among the various groups interested in mental health issues because of how bad the interaction between society and mental illness can get. Some of the sensitivity comes from social stereotypes about various conditions. Some of it is from people who have been treated pretty bad and get sensitive for good reasons. Some of it comes from communities that have to moderate behavior more carefully for a lot of complicated reasons. Some of the reasons are bad too.

    When i use the fisher wallace machine it just feels like a tiny, almost unnoticeable tingle where the two sponges are applied. also, when i use it and i close my eyes, i can see little flashes of light on the edges of my vision. i've heard that this is normal for using the fisher wallace. In terms of how it might be helping me, i think mostly it just sort of calms me down... helps me relax a little bit...
    Well it works by stimulating your cerebral cortex, the outer layer of your brain that acts like a combined RAM/hard drive for storing the data of your life and experience in terms of how you put reality together, and what your responses to life are. All the parts of your brain make consciousness work so doing things in one region can also affect data having to do with vision, touch lots of things. TMS in therapy as you are using it is supposed to enhance and more strongly "lock in" particular activity in particular areas that can enhance emotional control for example. I've warned people considering using these for non-medical reasons that they should consider the chance of accidentally making bad reactions and responses stronger. Medicine is a thing to be careful with.

    I took Haldol for 6 weeks or so, and the doctor said it should have been helping by that point and it wasn't, so he agreed i could go off of it. he had assumed the side effects would've gone away by then. he was especially concerned that i was STILL feeling hyper and ticcy and stuff.
    about what my risperidone and clomipramine was doing, i think the main things they were doing that other medicines couldn't do as reliably were:
    helping me not get angry as much
    helping me feel less depressed
    reducing the frequency and velocity of my tics
    helping me be able to handle stressful situations
    stuff like that.
    That makes sense. Antipsychotics can used for individuals who have problems with all sorts of emotional or other signals that the brain uses. It's an issue of particular signals being too strong and causing others to be harder to "hear". Once the strong signals are blunted the person can work on building inhibitory skills and other control skills. Some people need them and I'm not judging folks that do, but the ideal is to combine them with some form of therapy designed to build a behavior control scaffold that eventually does not need the medication.

  8. #8
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    Welcome to the forum
    I was also a bit worried about reactions to posts initially but have found only positivity.
    I was sorry to hear about all the avenues you have tried that you found to be unhelpful, but what stood out the most was that you feel you are at the end of your rope. It sounds like you are a wonderfully talented person and it is unfortunate that things have gotten to the point that you feel that way. I very much hope that things soon improve for you. Do your parents or your doctor know you feel this way?

    btw, I checked out the link on your post; love your mixes, also the tourettes piece

    Gina

  9. #9
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    Peter,

    I've taken the liberty of featuring your TicTech mix in a separate Forum post, that discusses Tourette based songs HERE

    Good Job, Peter!


  10. #10
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    Default Re: I'm a Touretter with 3 other disorders, just wanted to join this forum

    Quote Originally Posted by Steve View Post
    How do you spend your days? Are you studying, employed or in training?
    i was homeschooled from grade 6 to grade 12 by my mom but we followed the official material and did real tests at homeschooling test places. After i finished High School (as valedictorian of my section of the homeschooling community in my province) i tried going to art college for a while and i even got decent grades and worked really hard... but i couldn't hack it, i couldn't handle the immense workload and responsibilities and stuff so i dropped out. I have tried to have normal jobs from time to time too (working at EBGames, or Petcetera, and stuff like that) but i've basically accepted now that i can't really handle that either. So, i get AISH disability support money from the government and i work on my music and my photoshopping and video editing and stuff and sometimes do artsy things for people who are in need of artsy stuff... I also sometimes do tech support help for my mom and dad and they like paying me a little bit for that.

    Quote Originally Posted by Steve View Post
    Peter,

    I've taken the liberty of featuring your TicTech mix in a separate Forum post, that discusses Tourette based songs HERE

    Good Job, Peter!

    Thank you!

    Quote Originally Posted by garih View Post
    Welcome to the forum
    I was also a bit worried about reactions to posts initially but have found only positivity.
    I was sorry to hear about all the avenues you have tried that you found to be unhelpful, but what stood out the most was that you feel you are at the end of your rope. It sounds like you are a wonderfully talented person and it is unfortunate that things have gotten to the point that you feel that way. I very much hope that things soon improve for you. Do your parents or your doctor know you feel this way?

    btw, I checked out the link on your post; love your mixes, also the tourettes piece
    Thanks! I actually just met with my neurologist today and he gave us some good ideas. He said we could raise the Risperidone and Clomipramine a little bit and then take Metforin to counteract the weight gain side effects. So we're gonna try that... i'm feeling better today... and don't worry my parents know i'm depressed.

    Quote Originally Posted by Flutterguy View Post
    Well it works by stimulating your cerebral cortex, the outer layer of your brain that acts like a combined RAM/hard drive for storing the data of your life and experience in terms of how you put reality together, and what your responses to life are. All the parts of your brain make consciousness work so doing things in one region can also affect data having to do with vision, touch lots of things. TMS in therapy as you are using it is supposed to enhance and more strongly "lock in" particular activity in particular areas that can enhance emotional control for example. I've warned people considering using these for non-medical reasons that they should consider the chance of accidentally making bad reactions and responses stronger. Medicine is a thing to be careful with.
    That's interesting! i don't know much about TMS but everyone i talk to tells me it's really promising.

    EDIT: That thing this post previously said about not wanting to make people angry was actually the signature of my forum account. so it wasn't part of the post. sorry for the confusion. i got rid of the forum signature...
    Last edited by UncleBibby; June 16, 2014 at 09:33 PM.

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