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Thread: I am a 14 year old going on 15 struggling with a very severe case with Tourette's

  1. #1

    Default I am a 14 year old going on 15 struggling with a very severe case with Tourette's

    I've had Tourette's since the age of 3, my parents did not notice it because at the time all I used to do was twirl my fingers and hands. I used to have tingling sensations all across the neurologically sensitive parts of my bodies (legs, stomach, face, and neck). It only got worse as I got older, and I started feeling anxious about everything when I was 5 -- internally I knew that there was something wrong, and I wasn't "the normal one in the bunch". I could just feel it, nothing felt right for me physically. There were times when I went to sleep where I would wake up because my legs would be shaking without my knowing or sometimes with my knowing, but I just could not stop it.

    I would also like to point out that I do have Restless Leg Syndrome too. Since the age of 3, I felt like I had to let something out of my body (something felt very wrong with my nerves), and I could not explain it to my parents because at the time I could not talk well. Yes, I had many developmental issues. I'm fine now, however I'm extremely delayed with my motor skills, I have a bad lisp, I sometimes stutter, and I can barely visualize things in my mind - which includes having the ability to do mental math (I don't have the ability to do mental math sadly).

    I've always been embarrassed about it, but there is nothing in which I can do about it. I joined this forum just out of random Internet searching, but I never decided to post. I think that has changed, I want to know more about my condition. Alright back to the story. I never knew how to express the way I felt physically, and when I was 6 or 7 I started biting my shirt a lot and I felt relieved in a way. Later I found out it was a tic. Biting my shirt held in my future severe twitches.

    When I was 8 and a half, things got much worse. I started having a twitch where I'd just fall down straight onto the ground, and injuring my skull was a major concern, but thankfully I had the ability to lightly fall onto the ground. I cant explain it really. Back then, I had much more control of my twitches, and as I am getting older it is just getting worse. I used to be able to hold in my tics to some extent, now I cannot.

    When I was 9, I got out of public school because I needed a 1 on 1 assistant due to the fact that I disrupted the other kids with my tics. I had vocal tics, and still do although they are now diminishing slowly, but surely. The physical twitches however, are a totally different story. They've just been getting worse, and not in my control anymore. A list of my tics:

    -Barking
    -Humming and whistling entire songs especially full classical symphonies which I cant get out of my head
    -Shoulder shrugging
    -Neck stretching
    -Leg stretching
    -Jaw stretching
    -Tummy/belly shaking (constant)
    -Leg shaking
    -Hand shaking
    -Arm shaking
    -Jaw shaking
    -Back shaking
    -Shoulder shaking
    -Eyebrow moving
    -Eye blinking
    -Moving my ears up and down
    -Finger movements (several, to say the very least)
    -Finger biting
    -Holding fists together with immense force
    -Head shaking

    And I have many other tics, ones which I cant remember. I just have way too many to list, if I could remember each one I'd probably have to go through 3 pages.

    I don't wanna put you guys to sleep with my life story, so I'll just go with more recent events.

    I'm American, not Canadian. I hope I can still be here. I am 14, turning 15 in a week and a half. I am going into the 10th grade (which is grade 10 in Canada). I want to conquer my condition because I want to achieve the things which I want to pursue being in life. I won't give up, well I will try not to. I want to become a demographer or a real estate broker. There have been so many things which I've wanted to do in my life so far for example, get through with books which I really wanted to read, create some game ideas I've had, an application, and so on.

    My Tourette's gets in the way of basic life tasks for me. I cannot even think with my Tourette's, and I have so many thoughts going on in my mind, which I just cant let out. One upsetting thing is how whenever I'm trying to talk to someone I randomly pause and just cannot talk (it's like a blockage). It is pathetic for me. I have low confidence and self-esteem because of my Tourette's. I get so blue when I realize that I want to accomplish so many things but I just cant with this getting in the way of everything. It gets me angry when I see other kids being able to learn, but they just don't want to. I wish I could be them, always have.

    Because of my Tourette's, it is so hard for me to get good grades, I cannot even listen to what the teacher says, take down notes, I just cannot learn. I want to so much, but I just cant do it because the twitches get in the way of everything. I also have an array of other conditions such as: Asperger's Syndrome, and OCD and ADD all associated with my Tourette's. As told by my neurologist, it comes as a package. I also suspect that I have Myoclonus Diaphragmatic Flutter, a rare condition. Shaking has become a lot more of an issue within the past 2 years for me.

    It isn't a tic at this point, it is just something. I've known for awhile that I have a neurological condition more than Tourette's, I can feel it within me. I have been on so many medications. When I was 9, it was when my tics just flared out. I was taken to the emergency, I got an EG and a brain scan (I don't remember what they were both called). For over 4 years, I was treated as a psychiatric patient, until those medical idiots FINALLY realized it wasn't a mental disorder. In the past 2 years, I have found neurologists to be a lot more knowledgeable on Tourette's.

    I have had many alternative approaches to my condition too - acupuncture, aromatherapy, massage therapy, nuero-muscular massage therapy, reflexology, flower herbal remedies, homeopathic holistic doctors, and a whole lot more including many diets. Literally nothing worked. I have been taking Clonidine for a long time though, and all it does for me is make me go to sleep. I take it 3 times a day during schooldays, and it obviously effects my performance and I fall behind a lot. I spend 2-3 hours per day at school taking a nap because of the medication, and I take a very small dosage (I think 0.2 or 0.3).

    My parents are planning for me to have DBS (Deep Brain Stimulation), and last year I met up with doctors at NYC's Mount Sinai hospital to just tell me about the procedure, and whatnot. I was told that it is usually done at 18 years old, but most nuero-surgeons do it when you are 21+ because they believe it's safest to do it when the brain is fully developed. I really cannot wait that long, a proportion of my childhood was stolen from me because of my sudden Tourette's outbreak at the age of 9, and because of that I did not get to do things a normal kid at that age could do.

    I spent normal days in doctors offices, and trying out new medications prescribed by the doctors with all disgusting side effects.

    I am here because I need answers, advice, and people to relate to. Thanks for reading, my appreciations.

    --Tundra

    ---------- Post Merged at 10:09 PM ---------- Previous Post was at 09:58 PM ----------

    I also get tired very easily because of the twitches, and a bunch of headaches, and become hungry so easily. I eat a lot, but luckily I burn a lot of calories too from the tics. I also have a tic where I run a lot.

    ---------- Post Merged at 10:10 PM ---------- Previous Post was at 10:09 PM ----------

    I also have a twitch every 0.5 seconds to every 5 seconds. It is constant.

    ---------- Post Merged at 10:21 PM ---------- Previous Post was at 10:10 PM ----------

    I also have a pretty bad symptom where a burning sensation goes up on my spine. I also have itchy sensation feelings every second. It is a nuisance and extremely hard to cope with.
    Last edited by Steve; September 1, 2013 at 10:14 AM. Reason: re-format for easier reading

  2. #2
    Join Date
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    Default Re: I am a 14 year old going on 15 struggling with a very severe case with Tourette's

    Welcome Tundra and thanks for joining us.

    I'm American, not Canadian. I hope I can still be here.
    The TSFC Forum has no boundaries, and our members are from all over the world....we are pleased to welcome anyone with an interest in Tourette Syndrome, wherever they happen to be.

    Has there been any attempt to treat some of the associated conditions such as the OCD, the ADD and your anxiety issues?

    My parents are planning for me to have DBS (Deep Brain Stimulation), and last year I met up with doctors at NYC's Mount Sinai hospital to just tell me about the procedure, and whatnot. I was told that it is usually done at 18 years old, but most nuero-surgeons do it when you are 21+ because they believe it's safest to do it when the brain is fully developed.
    DBS is a radical form of treatment that is usually kept a s last resort after all other strategies have been exhausted. There are important risks associated with DBS that must be considered, and you might be well advised to follow the advice of your doctors to wait until later.

    Has your family ever been in contact with a local Tourette support organization such as the Tourette Syndrome Association or one of the local affiliates which may be able to point you to other qualified doctors who could evaluate your situation?

  3. #3
    Join Date
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    Default Re: I am a 14 year old going on 15 struggling with a very severe case with Tourette's

    Hi Tundra,

    First I must express how impressed I am by the clarity your writing. Your writing reads as if it was written by someone much older than someone turning 15 in a a week and a half.

    If you're having trouble keeping up with notes in class, you should ask for a scribe to help you in class, or ask if you can bring an audio recorder to class with you. This is an accommodation that a school should provide you with your neurology.

    In terms of treatment, I think Deep Brain Stimulation should be an option you consider in your future. Steve has been posting lots of information about CBIT on the Forum. Please do a search for CBIT in the little box on the top right side of this page and read more about this as a treatment for you.

    For help in talking to your school, do a search for IEP in the search box. An IEP is an Individual Education Plan - you should have one in place at your school.

    Good luck!
    Tina
    Tina, Forum Moderator, TSFC Staff Liaison

    TSFC Homepage
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  4. #4

    Default Re: I am a 14 year old going on 15 struggling with a very severe case with Tourette's

    Quote Originally Posted by Steve View Post
    Welcome Tundra and thanks for joining us.



    The TSFC Forum has no boundaries, and our members are from all over the world....we are pleased to welcome anyone with an interest in Tourette Syndrome, wherever they happen to be.

    Has there been any attempt to treat some of the associated conditions such as the OCD, the ADD and your anxiety issues?



    DBS is a radical form of treatment that is usually kept a s last resort after all other strategies have been exhausted. There are important risks associated with DBS that must be considered, and you might be well advised to follow the advice of your doctors to wait until later.

    Has your family ever been in contact with a local Tourette support organization such as the Tourette Syndrome Association or one of the local affiliates which may be able to point you to other qualified doctors who could evaluate your situation?

    Thank you so much, and yes I have been on medications for my OCD and ADD, but they get in the way of my Tourette's and the medications exacerbate it. My anxiousness and anxiety comes from the Tourette's. I am a germaphobe with my OCD, and have a very bad compulsion with washing my hands continuously. According to my parents, DBS is a last resort treatment for me. I've been to over 30 pediatric neurologists since the age of 9, and the sad part is everything has been tried. I was consulted about the risks of DBS, and the surgeon told me and my parents the chances of other complications were very low, there is also a 50% chance that the surgery could have no effect on the condition at all. My family has been in contact with one, well I think so. I have been to many qualified doctors, every one in my city (New York). Can you please tell me the risks? I don't know much about the surgery. My neurologists think my case is very similar to what a Parkinson's patient would be like.

    ---------- Post Merged at 12:27 PM ---------- Previous Post was at 12:19 PM ----------

    Quote Originally Posted by Tina View Post
    Hi Tundra,

    First I must express how impressed I am by the clarity your writing. Your writing reads as if it was written by someone much older than someone turning 15 in a a week and a half.

    If you're having trouble keeping up with notes in class, you should ask for a scribe to help you in class, or ask if you can bring an audio recorder to class with you. This is an accommodation that a school should provide you with your neurology.

    In terms of treatment, I think Deep Brain Stimulation should be an option you consider in your future. Steve has been posting lots of information about CBIT on the Forum. Please do a search for CBIT in the little box on the top right side of this page and read more about this as a treatment for you.

    For help in talking to your school, do a search for IEP in the search box. An IEP is an Individual Education Plan - you should have one in place at your school.

    Good luck!
    Tina
    Thank you. I love writing, and just talking. In the real world, many people don't understand me because of how bad my speech is. I also have a scribe in class, but I also have to walk up and down in the class which is a burden on my learning. I'm rather scared to have the first operation performed on me, but if it could help me then I may have to lean toward it. I have an IEP, but there isn't much more that could be done for me due to the severity of my condition. On state tests, since my hand-writing is not legible; I have no other option but to type everything up. I'm a very fast typer though, which is good at least.

  5. #5
    Join Date
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    Default Re: I am a 14 year old going on 15 struggling with a very severe case with Tourette's

    Quote Originally Posted by Tundra
    Can you please tell me the risks? I don't know much about the surgery.
    Every therapeutic procedure carries some risk, which is why it's important to consult competent practitioners in the field who can evaluate the benefits vs the risks in your particular situation.

    Evaluation of benefits and risks can only be made by a physician who knows your medical history, your needs and your expectations.

    Then it's up to you and your family to make an informed decision on whether the benefits outweigh the risks for you.

    Please see Deep Brain Stimulation (DBS) for Tourette Syndrome FAQ's for more information on DBS benefits and risks.

  6. #6

    Default Re: I am a 14 year old going on 15 struggling with a very severe case with Tourette's

    Quote Originally Posted by Steve View Post
    Every therapeutic procedure carries some risk, which is why it's important to consult competent practitioners in the field who can evaluate the benefits vs the risks in your particular situation.

    Evaluation of benefits and risks can only be made by a physician who knows your medical history, your needs and your expectations.

    Then it's up to you and your family to make an informed decision on whether the benefits outweigh the risks for you.

    Please see Deep Brain Stimulation (DBS) for Tourette Syndrome FAQ's for more information on DBS benefits and risks.
    I just read the FAQ's, and I must say it was very helpful and informative, thanks. I am eligible for the surgery, I did that Yale evaluation last year as I remember and I was qualified for it. The neurologists said there is no way for it to fully go away though because of how many tics I have which scatter all across the body.

  7. #7
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    Default Re: I am a 14 year old going on 15 struggling with a very severe case with Tourette's

    Excellent! Sounds like you are taking the right steps toward an important decision.

    As Tina suggested earlier, it might be in your interest to speak to your medical advisors is Comprehensive Behavioral Intervention for Tics (CBIT) might be right for you as well.

    CBIT is a form of cognitive behavioral therapy designed for young people of about your age range as a way to learn strategies to somewhat manage tic expressions without medication.

    I know you mentioned you currently take clonidine, and this is not to suggest CBIT might be a replacement for the medication you currently take. This would be an issue to discuss with your doctor.

    All I'm saying is you may want to look into a multi disciplinary approach to managing your symptoms. That way you give yourself many different tools to deal with individual issues.

    Quote Originally Posted by Tundra
    The neurologists said there is no way for it to fully go away
    There may not be a magic bullet that can eradicate every symptom of Tourette and associated disorders because of the complexity of physical and psychological symptoms. You need to pick your battles, by prioritizing what symptoms affect your quality of life most, and find strategies to deal with those. It may require a combination of medical interventions, perhaps DBS in your case, combined with some medication treatments along with some cognitive therapies.

    I would suggest that you keep your mind open to a variety of solutions, keep all your options open and do a lot of consultation with competent people, as you appear to be doing.

    As Tina alluded to earlier, one has to be impressed with your maturity and your ability to articulate your thoughts.

    Does anyone else in your household or extended family share a Tourette or similar diagnosis to your knowledge?

  8. #8

    Default Re: I am a 14 year old going on 15 struggling with a very severe case with Tourette's

    Quote Originally Posted by Steve View Post
    Excellent! Sounds like you are taking the right steps toward an important decision.

    As Tina suggested earlier, it might be in your interest to speak to your medical advisors is Comprehensive Behavioral Intervention for Tics (CBIT) might be right for you as well.

    CBIT is a form of cognitive behavioral therapy designed for young people of about your age range as a way to learn strategies to somewhat manage tic expressions without medication.

    I know you mentioned you currently take clonidine, and this is not to suggest CBIT might be a replacement for the medication you currently take. This would be an issue to discuss with your doctor.

    All I'm saying is you may want to look into a multi disciplinary approach to managing your symptoms. That way you give yourself many different tools to deal with individual issues.



    There may not be a magic bullet that can eradicate every symptom of Tourette and associated disorders because of the complexity of physical and psychological symptoms. You need to pick your battles, by prioritizing what symptoms affect your quality of life most, and find strategies to deal with those. It may require a combination of medical interventions, perhaps DBS in your case, combined with some medication treatments along with some cognitive therapies.

    I would suggest that you keep your mind open to a variety of solutions, keep all your options open and do a lot of consultation with competent people, as you appear to be doing.

    As Tina alluded to earlier, one has to be impressed with your maturity and your ability to articulate your thoughts.

    Does anyone else in your household or extended family share a Tourette or similar diagnosis to your knowledge?
    My parents spoke to my doctors about it a few months ago and the doctors said that they do not think it's appropriate for me as I've had similar types of behavioral therapies before and nothing helped. The only other option I have is something known as medical cannabis, I do not want to have to resort to that. It's not legalized in my state currently for medicinal usages yet, and even if it is I still do not want to use that approach. I hope in the future I can have other outlooks.

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