Welcome to the updated and refreshed Tourette Canada Online Forum!

Tourette Canada Online Forum is a free, safe, moderated online community where registered users can exchange ideas, information and support about issues related to Tourette Syndrome. Tourette Canada has recently changed the server and refreshed the pages so returning members will notice a brighter look. Tourette Canada welcomes back two former moderators, Janet Rumsey and Cathy Wylie, to the Forum. Their knowledge and insight will serve the Tourette Forum participants with dedication and expertise.

We would like to thank the administrators and moderators who have dedicated countless hours to build and maintain the Forum. We look forward to continuing to provide a place for individuals and families affected by Tourette Syndrome and its associated disorders to get information, exchange information with others, and connect with the affiliates and support available across Canada.
See more
See less

Deep Brain Stimulation or Vagus Nerve Stimulation for TS/OCD

  • Filter
  • Time
  • Show
Clear All
new posts

  • Deep Brain Stimulation or Vagus Nerve Stimulation for TS/OCD

    Tourettes is defined as a motor movement disorder, yet encompassing different types of ?disinhibition? or lack of control. People suffering with tourettes describe an urge building up something akin to the sensation one feels when trying to fight off a sneeze. If these people don?t perform the tic ? often perceived as an involuntary motor movement like head jerking, or flailing of the arms, they experience more distress, until they have to perform the tic.
    There seems to be a blurry line, however, between OCD and Tourette?s. People with Tourrette?s are seen by some as displaying involuntary, perhaps unpredictable motor or vocal phenomena. But as mentioned above, this is not what some people diagnosed with Tourettes describe.
    This urge that builds up, is hardly different in my mind, from the intrusive thoughts that compel some people with OCD to perform the rituals they engage in. In my life, intrusive, disturbing thoughts enter my mind, and tell me that if I don?t perform a painful ritual, I will be given over to suicide or evil spirits. But it?s not very complex in times like now, when I?m under stress. It is almost a reflex reaction.
    My disturbing thoughts are all spiritual in nature, and the common denominator is that they?re geared to make me die, or at least suffer. If I try to do something to better myself, the thoughts say, you?re not worthy of that, and you?ll be given over to evil spirits by trying to avoid the real issue with drugs or surgery, the real issue being the spiritual problem you have ? you need to suffer because you?re a bad person.
    I used to feel like if I took medical help, I?d be blaspheming God, and denying the ?spiritual reality? that all my suffering comes from the fact that I?m bad, and I?m only going to make myself suffer worse if I take medical help. The reason I have insight to write this letter, in the midst of this, is because there was a four month period when I was free of Obsessions/Tics, and I had none of these thoughts.
    But now I?ve tried everything, an intensive behavioral therapy program, I?ve given one or all drugs from the categories of drugs used to treat my condition a therapeutic run. That is to say, I stayed with them for six or more weeks, under a neuropsychiatrist at UBC. This may not be true, because I was always changing my meds, as exam time would come and I would start to panic. This was the case for 6 years except for clomipramine, as I had a scary reaction to it, and came right off of it.
    I was taking a drug that was ?discovered? for OCD/TS by a U.S. psychiatrist, Tramadol - I think it was helpful with the OCD/Depression, but made the anxiety worse. I sincerely question whether I?d be able to do a paper route in my condition. I don?t drive, maybe I could learn, but my obsessions occupy so much time, I don?t think I could get the papers delivered in time. There?s so much confusion over what my problem is. My neuropsychiatrist at UBC said ?I merit an OCD diagnosis, but you very defintiley have anxiety disorders.? My new psychiatrist simply says, 'your my OCD is probably pretty severe.'
    The neuropsychologist who worked with the neuropsychiatrists in dewtoiller, (UBC movement disorders clinic) said that my anxiety was the driving problem, and the OCD was just a ?baromoter? for how bad the anxiety was. I think she had a good understanding of my emotions but as far as clinical diagnostic ability ? I think my present psychiatrist is probably right. Clonazepam however, does wonders for me, an un-informed person may not know I was sick, for about three days, until my anxiety came back, and I couldn?t mask it with sedating drugs, as I had to face my reality, and/or I gained tolerance to the clonazepam.
    I?m interested in VNS therapy for my anxiety ? it reaches incapacitating levels, and the treatment I?ve received centers around seratonin and GABA modulation, but I?m told that dopamine and seratonin are key in tourrette?s treatment. Perhaps it?s appropriate that I?m not being treated from a ?purist? tourette?s perspective, if that exists, as I don?t display the motor tics. I do however, have weak thoughts that seize me and tell me I have to embarrass myself by skipping down the steps, or saying humiliating things, in order to ward off suicide and the ?sense of impending doom? described by some OCD sufferers. I have this constant urge to embarrass or harm myself in order to ward of suicidal ideas or feelings. Does anyone else have an urge to punish themselves by doing something embarassing/awkward/uncomfortable, because they think they're evil?
    Also of interest, although I don?t know the feasability of accesing it, is Ocinaplon an investigation drug by dov pharm. As clonazepam signficantly helped, except that it obliterates my memory and causes sedation - making work, study, and most every day tasks pretty much impossible. I have shown courage, please help. Ocinaplon, purpotedly, modulates GABA receptors in the same way clonazepam does, but they have isolated and removed the mechanisms that cause anterograde amnesia, sedation and cognitive dulling. The world doesn?t seem to be going crazy over it however, so perhaps it?s not likely the miracle cure I?m hoping for. I realize I've rambled, does anyone have any suggestions or see any experiences they can relate to.

  • #2
    Deep Brain Stimulation or Vagus Nerve Stimulation for TS/OCD

    When I was young I thought that god was mad at me and that it was the reason for my tiks. Ialso had suicidal feelings and tried to commit suicide 3 times b4 I was 21. I think that suicide is one of the more under discussed topics in relation to TS-OCD. When my ts-ocd is really bad, like in the last 3 months, I still think that god hates me and wants me to commit suicide.

    I kind of think of OCD as like mental tiks as opposed to motor (physical) tiks or vocal tiks but all r related even though someone could have just one or all three. I use med marijuana to control my thoughts and coprolalia(cursing) but my motor tik isnt that bad and I dont even try to hide it.

    I know that this may sound impossibe to u and its really hard for me but have u tried any meditation techniques to calm ur mind. When reading about meditation its main purpose or one of its main purposes is to calm the mind so that we have the ability to control our thoughts and focus on what we want too. It sounds great but doin it is anothe matter. Well best of luck to u.


    • #3
      Deep Brain Stimulation or Vagus Nerve Stimulation for TS/OCD

      I tend to differentiate between OCD and TS by the level of thought involved. (My doctor -who has significant experience in the matter- tells me that I probably have both, and I'm waiting for an actual diagnosis from a specialist)

      My tics are generally unconcious. Although I'm usually aware of them before I do them (much like you can feel an oncoming sneeze or yawn), the urge to do them doesn't come from any particular thought.

      When it comes to my OCD-driven behaviours and rituals, usually there's some kind of 'rationale' behind it, however illogical it might be. You describe it as a fear of harm, or as a punishment. With me, paranoia is often the culprit. I'm very uncomfortable being close to people, being touched or being watched. When I'm particularly anxious, I'll go to great lengths to avoid having anyone behind me. Whenever possible, I'll screen the room I'm in for cameras and I'll check every mirror in the room to ensure that it's not a two-way mirror with someone, or a hidden camera, watching from the other side.

      I've never had a fear of being judged by God, or thoughts that God hated me or anything like that. In general, I'm existentialist and reasonably agnostic. Perhaps it stands to reason that since my rational side has never been particularly concerned about divine opinion, my obsessive side never developed that trait either.

      That said, I've had similar feelings about other figures, such as educators, government and society in general, although not in such a definable way. It's more of a dull paranoia that I feel when I'm anxious. In most cases, I can rationalize with myself as long as I'm allowed to verify that decision with a few ritualistic 'tests'.