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Thread: 21 year old in desperate need of relief

  1. #1
    Join Date
    Jan 2014
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    Chicago, IL
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    Default 21 year old in desperate need of relief

    Hello,
    My name is Derick and I am 21 years old. I have joined this forum in hopes of finding some much needed support.
    I was diagnosed with childhood tics when I was young. I had a few facial tics, but my tics were never too bad. I also had mild OCD, but this wasn't a huge issue either.

    My freshman year of high school (almost 7 years ago) I began having really bad back pain everyday. The pain covers my lower back all the way up to my shoulders and neck. I went to many doctors and neurologists, performed countless tests, x-rays, and exams, but no one could find the source of the muscular pain that I was having. The pain got so bad during my senior year of HS that I had to go home somedays because I was in too much pain and could no longer sit in my desk. I started seeing a pain specialist in Chicago and was prescribed pain medication. I have been taking medication to help with my back pain for the past 3 years. My pain hasn't really improved, but the medicine helps me get through college and work.

    Unfortunately: This past year my tics have returned. I was diagnosed with TS a few months ago, and things have been getting worse ever since. I don't mind the facial or vocal tics, but I have started doing tics that aggravate the muscles in my neck and cause me so much pain.

    I have one tic where I tilt my head left and right, which stretches the muscles in my shoulders. I already have awful pain in my shoulders, so this tic just makes it 10 times worse. I also constantly crack my neck and do this small jerky motion with my head that looks like I'm shaking my head "yes". These two neck movements add so much strain on my neck and cause me to have a constant headache.

    I feel so hopeless right now. I get so frustrated with my tics because they cause me so much pain. My daily pain was already hard enough to deal with, but now I have these stupid tics that are just making everything worse.

    I am going to see my psychiatrist this week to discuss medications that might help with my tics. I have done a lot of research online and found that the most commonly prescribed medications for Tourette's are antipsychotics such as Orap, Risperdal, and Haldol. I really don't want to try these types of medications because of the bad experiences I have had with other psychiatric medications in the past. I also read that Clonidine and Marinol are used to treat TS.

    If anyone has any experience with these medications, I would love to hear your thoughts on them! I am afraid of the side effects, but I am also getting so frustrated with the constant pain caused by my tics. Thanks for reading

  2. #2
    Join Date
    Apr 2005
    Location
    Ottawa, Canada
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    Default Re: 21 year old in desperate need of relief

    Hello Derick and welcome to the Forum. Sorry to hear about the frustrations you've encountered in trying to deal with the pain you've experienced.

    My first question would be to know what is the pain medication that had been prescribed for your back. My follow up question would be, if, as you said:

    I have been taking medication to help with my back pain for the past 3 years. My pain hasn't really improved, but the medicine helps me get through college and work.
    You aren't getting pain relief, so why are you continuing with this medication? How is the medication helping youo get through college and work?

    the most commonly prescribed medications for Tourette's are antipsychotics such as Orap, Risperdal, and Haldol.......I am afraid of the side effects
    Discuss this very carefully with your doctor, because these medications do have the potential for bothersome side effects, which is why many people prefer to find other ways to deal with tics rather than have to deal with the adverse effects of these medications. I would also be concerned about drug interactions with your pain medication...which is the reason for my earlier question.

    The reality is that in general, tics do not respond well to medications, or perhaps better stated, people with Tourette often find living with their tics easier than living with the side effects of the medications usually prescribed for tics.

    On the other hand, you may want to investigate some non medication strategies to help alleviate your difficulties.

    We know that environmental factors like stress and fatigue can exacerbate tic activity. Perhaps the stress of your back pain might well be a contributing factor, added to some academic pressures and maybe some personal issues as well could have a cumulative effect on your stress and anxiety.

    Given your age and motivation, I would propose you look into consulting a medical professional trained in a form of Cognitive Behavioral Therapy designed for people needing to manage their tic symptoms. This form of therapy called Comprehensive Behavioral Intervention for Tics (CBIT) is recognized by the Tourette Syndrome Association (See HERE) and (HERE).

    CBIT is recognized and is recommended as a first line therapy by TSFC, Tourettes Action and many major Tourette advocacy groups.

    Our Forum contains lots of information on CBIT HERE.

    CBIT provides a comprehensive approach to modifying lifestyle to include specific relaxation strategies, understanding triggers and situation that affect your tics, and provide you with training in using specific tic blockers to help manage your symptoms.

    Nothing can eradicate or cure Tourette Syndrome symptoms, but a therapy like CBIT can help you learn ways to manage your tics, using habit reversal and your own brain plasticity to gain some control over your symptoms.....without necessarily having to take medication. I qualify the final statement by saying your doctor would be the final authority in determining if some form of medication might be required to manage other symptoms.

    The point is there is hope if you choose to investigate this further. CBIT therapists receive specific training in and are accredited and listed by the Tourette Syndrome Association.

    If you are i Chicago, I believe there are trained and accredited CBIT therapists in your City. A call to TSA would point you to them

    When you speak to your psychiatrist, ask him/her to consider referring you to one of these CBIT therapists for evaluation.

  3. #3
    Join Date
    Aug 2013
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    upstate NY
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    Default Re: 21 year old in desperate need of relief

    I would try some milder medications first before going to the big guns. My son has benefited from Guanfacine and has recently added Prozac and Klonipin. I think it's too soon for the Prozac to be having much of an effect yet, so I think I can safely say that the Klonipin is helping too.

    Besides all the suggestions already offered, I would like to suggest you work with a good chiropractor, if you haven't tried that already. A really good one will want to see your x-rays and any other tests you've had of your back. And s/he will not make the pain worse. If the chiropractor you see says that you may feel more pain for a couple of days after the adjustment, or if that happens to you, steer clear! There are chiropractors out there who do not take that approach!

    Make sure you show the chiropractor the neck tic.

    You clearly need some short term relief!

  4. #4
    Join Date
    Jan 2014
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    magnolia
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    Default Re: 21 year old in desperate need of relief

    I have those neck tics too. It gets so bad at times that I have to wear a neck brace & take muscle relaxant meds. I took Risperdal & marinol. Ridperdal got rid of my tics but also made me kinda of psychotic Marinol did work but it only calmed my tics but did not get rid of them & the only side effect was sleepy & hungry. My first tic was at 5 & I was diagnosed at 10. Now that I'm 45 I can tell you that my TS gets REAL bad with stress but on a normal day I just get really annoyed by them. TS is very frustrating & painful, but hang in there you're not alone. Ticcing together forever, Lisa

  5. #5
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    Default Re: 21 year old in desperate need of relief

    Quote Originally Posted by ticcingtogether
    I took Risperdal & Marinol
    Marinol is not a medication commonly prescribed for managing symptoms of Tourette Syndrome.

    the only side effect was sleepy & hungry.
    This medication is prescribed for people being treated for anorexia or AIDS patients to stimulate appetite.

    The interaction of Marinol with Risperdol might explain the drowsiness.

    Are you still taking this combination of medications, Lisa?

  6. #6
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    Default Re: 21 year old in desperate need of relief

    Hi Steve
    I absolutely never mix the two. I only tried Marinol back in the 80's with UCLA's research studies being done on TS. In my twenties my TS was very bad & I was learning how to control them so I did choose to take med's at that time with UCLA. The only other time I took med's was as a child & that was Halidol. Steve, you also nailed the pain med reaction (well, for my ts) when I take pain med's my TS reacts like I drank 10 energy drinks, it is horrible! Now at 45 I choose to just let my tics come out & just be me with no med's. I do hurt myself with my grunts but I use over the counter pain med & LOTS of ice.

  7. #7
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    Default Re: 21 year old in desperate need of relief

    The discussion that began here on treating TS with Acupuncture has been moved to its own thread located HERE in Diagnosis and Treatment

  8. #8
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    Default Re: 21 year old in desperate need of relief

    Quote Originally Posted by ticcingtogether
    I have those neck tics too.
    Lisa,

    Yo may want to ask your doctor if Botulinum Toxin (Botox) might be right for you, which has been reported as most useful for people with Tourette for a single muscle (most frequently for eye blinking, neck and shoulder tics)

  9. #9
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    Default Re: 21 year old in desperate need of relief

    Botox works very well. I have had injections down my neck & on top of my shoulders for two years now. It has taken away my neck pain. YAY! Only side effect is my head is heavy, but it is so worth it.

  10. #10
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    Apr 2014
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    Waterloo
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    Default Re: 21 year old in desperate need of relief

    Hey everyone,

    I am new to this forum, but I am indeed happy I found this thread that Derek started because I can relate to his "muscle tic" issue. I am a 23 year old who was diagnosed with tourettes when I was about 7. My tics are almost all motor ones, which include facial grimacing, twitching, tapping, head jerking, etc. I do well most of the time, as I have had much time to find out ways of coping with the different tics (as I will get into shortly.

    But a new tic I have encountered the last two years is very much similar to yours Derek, twitching and agitating of my muscles (especially in my back, both upper and lower), causing my muscles in areas to get quite painful due to the tics. I will tell you guys (more particularly Derek) what I have done to deal with this. Not from a medication or psychological therapy perspective, but from a fellow touretter who feels your pain.

    I never used to exercise much, as my occupation for the last 3 years is a metal fabricator/welder fitter, so I am always doing physical work and never felt up to doing much activity afterwards. But I started doing a lot of stretching about 2 times a day, everday, all areas (not just my painful muscles like my back). And after doing this, it seemed to really relax everything, even if I still sometimes agitated the muscles later on, when I was ticing. In addition, I started exercising daily (lifting weights & cardio), in hopes of making my muscles stronger, even if I did sometimes agitate them.

    After doing this for a couple of weeks, I felt great! The feeling of NOT having a sore back, neck, etc, was totally worth it.

    I hope you this helps, as I know all too well the pain from ticing, and I would do anything to not tic...but it seems coping is the only way for now. I wish you guys goodluck with the tics, and don't give up.

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