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  • Sometimes, medication isn't the answer.

    Join me as I recount my experiences with TS, OCD and ADD as I sampled a variety of chemical treatments over the past year. This post is long, and I ramble. Prepare yourself.

    ----------

    I give up. Very up.

    Now, this post isn't intended to scare anyone. Let me first say something for medication -- it can help. I know people who probably wouldn't be alive if it weren't for certain antidepressants. Others simply lead a simpler life with them. Some people can overcome Tourette's Syndrome, OCD, ADHD and the plethora of challenges we live with and hear about with the help of medication. For some people, it's the ideal way to reclaim functionality. It's great for some people, but not everyone.

    And not me.

    I could have imagined that I suffer from ADD at any point in my life. I've never been one for mandatory attention. In the case of Tourette's Syndrome and Obssessive-Compulsive disorder, retrospectively I can say I've had from both for most of my life, but usually in small doses.

    A year, and some change, ago things got more interesting. By that time my TS was clear to me, but I never really thought about it. But around this time it became much more apparent and started to interfere with my work.

    Knowing what my brother, who deals with ADHD, OCD and TS, goes through, I figured I might as well try and do something. So, I consulted with my doctor.

    TS, OCD and ADD, I was told. I was pretty promptly referred to a psychiatrist.


    Now, most people with anxiety disorders are pretty hesitant to dive into medication. I was no different, but I was also annoyed and definitely feeling slowed down. It was time to do something.

    Medicinal Preview: Clonidine

    I was first prescribed Clonidine to help with my tics. It did reduce tics, but unfortunately, it only did so by putting me to sleep. In theory I might have gotten over this, but I have a job to do and after falling asleep on my keyboard at work (several times) it was time to stop.

    When I went to my psychiatrist I had two options. I could attempt medication, and/or I could begin cognitive psychotherapy to tackle some of those obsessive-compulsive troubles. I chose both, but the medication is what I'll speak to.

    I have a good psychiatrist. This isn't one of those "my doctor is a moron" things... he's actually extremely well-informed, and has treated several Tourette's/OCD sufferers in the past. My story wasn't new to him. He had suggestions, but medication was always my decision. And so I decided. Here's how it went.

    Medication Round 1: Paxil CR (Paroxetine HCI)

    Paxil is chiefly an SSRI antidepressent and is most commonly prescribed to treat depression. It's also known to be helpful for OCD and other anxiety disorders. It's relatively safe, and it has a high success rate. Paxil has side effects, but it almost never causes symptoms to worsen.

    Almost never.

    Like any SSRI, Paxil takes 2-3 weeks to kick in. (That's actually a low estimate, but it treats OCD faster than depression, and people with anxiety disorders tend to react faster to medication, I'm told.) By the end of the month, I was mysophobic.

    Mysophobia is a fear of contamination, filth or germs. I've always had this to a certain extent, but within a month I was addicted to hand sanitizer. I couldn't go through a door without using Purell on my hands both before and after I passed through it. My doctor was stunned, as were some other psychiatrists and neurologists I mentioned this to.

    I gave it a little time to adjust, but I didn't. Naturally, it was time to phase out the Paxil.

    I never totally got over the mysophobic tendencies after that, but I returned nearly to normal after coming off Paxil.

    Medication Round 2: Risperdal (Risperidone) and Clonazepam

    Clonazepam is an anti-anxiety medication. I was given an extremely low dose of this, and it helped a little.

    Risperidone (an antipsychotic) had virtually no effect on my OCD, for which it was prescribed. It did, however, makde me feel like a zombie. This one gains effect quickly. I gave it about a month. No luck.

    Medication Round 3: Fluvoxamine

    Fluvoxamine (or Luvox) is another SSRI, but in this case, it's most commonly used for OCD. If any SSRI was going to work, it was this.

    Paxil aggravated my symptoms in one month, suddenly. Fluvoxamine was far more... cruel. After nearly two months, I couldn't tell you if it was doing anything. I still had symptoms, but people told me I seemed to be doing better. I was less anxious, and my tics were reduced as a side effect.

    Then, things got worse. My mysophobic tendencies resurfaced (Purell became a must again). My tics worsened. I experienced, for the first time, coprolalia.

    But it wasn't obviously the medication. I had been on it for over two months, and the increase was gradual. I had been getting worse for the past 2-3 years anyways, so I couldn't be certain. I continued.

    By the end of my time with Fluvoxamine, I was ticcing non-stop. I was working from home all the time, and getting way behind on all of my work. Things weren't their best.

    I was given Haldol (Haloperidol) in a low dose on top of the Fluvoxamine to help with my tics. It had few benefits.

    At one point, I made the decision. The medication couldn't be helping (unless I was suddenly schizophrenic without them), so the only way to know for sure was to come off of them -- all of them. So I asked my doctor. He agreed. Haldol was dropped immediately (I was on a low dose for a very short period). Fluvoxamine was dropped next, over the course of two weeks. I became more anxious in 2-3 day periods during each drop in dose. After being without Fluvoxamine completely for about two weeks, I was good.

    I mean, I was good. It all went away. I still tic, I still carry Purell, I still push the elevator button at least eight times per ride. But it wasn't a constant burden anymore. Compared to what I went through on the medication, I was virtually free.

    So I was just on Clonazepam after this. I was on a low dose still, and wasn't really seeing the benefit of it (or at least not understanding it) so I wanted to drop it as well.

    I have advice: Do not drop Clonazepam without tapering it off. Wow. I made the mistake of forgetting it two or three nights in a row, and then figuring "well, I might as well just stop". That's a bad idea. It will make you sick, disoriented, clumsy, groggy and wanting to stop the lead pipe banging against the side of your head. I took it back up in an even smaller dose and then reduced it appropriately (using little shards of tablets... hey, it worked.).

    Unmedicated

    I'm still annoyed by some of the "features" of my neurological makeup, but I did gain from this experience. I learned something important, which I will express in metaphorical hyperbole: After experiencing Hell, the indifference and hostility of Earth feels like Heaven.

    Tics were always annoying. OCD has always been challenging. But after learning how to deal with 3+ tics per second and the constant anxiety of severe OCD, my situation seems much more, habitable.

    Now, I must remind you -- this doesn't mean medication is wrong for you or your child. The point is only that it varies for everyone. I'm content right now, but if I do worsen again, I may decide to try a new, different type of medication. I don't know. But remember, a negative psychological reaction to Paxil is rare. Major increases in tics and OCD on Luvox are rare. My brain is apparently fairly alien to medical science... which I guess I'm a little proud of.

    As much as doctors know, as much as everyone on this forum wants to help and share their experiences, there are some things you need to learn for yourself, sometimes the hard way.

    Cheers.
    Colin

  • #2
    Sometimes, medication isn't the answer.

    Hi Cailean,

    I'm glad you shared your experience with meds. It is good to know all sides of the experiences with meds. I know that meds might be offered for my son when he has his consultation with the ped. neurologist and your story is one I will keep in mind. I understand, as you said, that meds can be very helpful, but I know to exercise a bit of caution when making that decision to medicate or not. Thanks for your post.


    Grammy

    Comment


    • #3
      Sometimes, medication isn't the answer.

      Cailean, great story. Thanks for sharing your experience.
      Janet

      TSFC Homepage

      Comment


      • #4
        Treatment Options/Meds that dont work

        Hi there. We can relate. My son is 12 years old and has TS and, ADD, and I've observed OCD.He's tried several meds over the last few years. Some of them caused a need to open doors of moving cars ( me being the driver). Most of them just made everything worse. He now has a new medical label. He's called a "non-responder" to stimulant medication. This, I was told by the Dr. is proof that he does have TS. As if we needed proof! A neurologist suggested my son be tried on Efamol, a natural oil capsule. The family dr and the pediatrician don't seem to like that idea and the family dr says wait until she checks with the neurologist! So, once again, time is flying by while this child waits for the help that he really needs (whatever that may be).I also understand the rambling...
        Meds tried were dexedrine,clonadine,risperdal (twice, because the doc's were sure i hadn't left him on it long enough the 1st time,3 yrs prior), concerta, and last but not least, Strattera.

        Comment


        • #5
          Sometimes, medication isn't the answer.

          Hi Sage,

          Welcome to the TSFC website.

          There is Tourette Syndrome support groups all across Canada and Here they are listed to find one in your community.

          When was your son diagnosed? Now that you have a diagnosis, how has your family been coping?

          Here the TSFC have articles including the Nine Faces of TS Parent, they are really interesting.

          In many cars the back seats have a switch in the doors for child safety locks. Which means that no one can open the back seat doors from the inside, they can only open from the outside. This way he would be unable to open the car doors therefore, it would keep him safe in the car.

          We have many discussions on various tics throughout the body in the tic parade. Please jump into any discussion that you want or start a new one.

          You are not alone and we are always here to talk to and give support to you and your family.

          Looking forward to hearing from you.

          Comment


          • #6
            Sometimes, medication isn't the answer.

            Welcome to the TSFC Forum, Sage. Please check with the National Office of TSFC about support in Nova Scotia because there was talk recently about a new support group being formed.

            You can call (800) 361-3120 and they can give you the details.

            How is your son coping with his Tourette at this time?
            Steve
            TouretteLinks Forum

            Comment


            • #7
              Sometimes, medication isn't the answer.

              Hi Steph, hi Steve,
              thanks for answering my post. To answer your questions, my son was diagnosed when he was 8 (i think). He was in grade 2 (i remember because of the teacher we had to deal with). As far as the family coping, his 2 older brothers and his father say he doesnt have TS, he's just bad or that I'm the one putting all this stuff in his head. Luckily the brothers are older and don't live at home and the father is a long haul truck driver and is hardly ever around. We have little to no understanding and support from the family Dr, who sends us to a pediatrician who is at a loss for what to do for him, and a mental health counsellor who doesnt seem to want to give him another appt. and i can't get any further conversation from than a game of phone tag. School is a nightmare. Summer vacation is the only time that we are almost like everyone else, because he's not he only one who's not in school. So coping gets harder all the time, with each school year. And how is he coping? Well, he's an amazing kid, but he's only human and in 2 weeks he'll be turning 13 years old...I'm not sure how well he will be able to cope with all of this anymore. It's a tough world for any kid these days so I can't see it getting easier for some time. Thanks for reminding me that we're not as alone as we feel. Sage.

              Comment


              • #8
                Sometimes, medication isn't the answer.

                Hi Sage

                Thanks for joining our forum. It is often very difficult for Dads to accept TS. The biggest obstacle is educating people close to you to be able to truly understand what is happening. The fact that TS is diagnosed based on behaviors is not understood by many. I am glad that you are able to accept and understand your son's symptoms. Having you as his advocate will be all he needs right now to cope.

                Have you contacted a representative from TSFC. When school starts in September you really should arrange an in service for his teachers as well his peers.

                As for the summer, the absence of demands makes a world of difference for our kids' quality of life. Recently some of the teens with TS have been communicating via the forum and making connections. Perhaps you can encourage your son to connect with other teens here to share thoughts and frustrations, just like we do as parents.

                please stay with us and let us know if you need anything.
                Janet

                TSFC Homepage

                Comment


                • #9
                  Sometimes, medication isn't the answer.

                  Sage,

                  One of the reactions we frequently see among family members in connection with a member of the family who is suspected of having or is diagnosed with Tourette is denial.

                  Perhaps your therapist or physician, once you make contact with one who understands Tourette can of assistance in informing/educating your husband, provided he is willing to listen, to help him understand that sometimes it isn't just "bad habits or behavior", "stubbornness", or "drama".

                  Denial manifests itself in a number of ways:

                  "A member of my family couldn't possibly have something like this!"

                  Could it be fear?:

                  "I don't want this to be true so I refuse to let it be true."

                  Or, could it be about power struggles?:

                  "She thinks this is a problem and I hate/am angry with her so I'll refuse to accept this" .

                  Friends support friends in time of need, and the same should apply to spousal and family relationships.

                  Can a third party counselor or health professional help in a relationship where one partner unwilling or incapable of providing support?

                  Would it be different if the situation were reversed or if the need for support was in connection with a medical issue like cancer or diabetes?

                  Your goal needs to be to find a specialist with a professional interest in Tourette and tic disorders.

                  Have you made contact with a local TSFC contact person in Nova Scotia?

                  Can you locate a neurologist interested in Tourette?

                  If you cannot find someone locally, you may have to consider traveling to another City for a diagnosis. Is that a possible option you might consider?

                  Let us try to help you figure out a solution.
                  Steve
                  TouretteLinks Forum

                  Comment


                  • #10
                    Sometimes, medication isn't the answer.

                    school used to be hard for me but try to educate your sons classes it makes it a lot easier and people just learn to ignore it and for my meds I started of with a milligram a day of risperdone then they upped my risperdone to 1 1/2 and they put me on 5 mills of paxil but then I went a little cukku and was in the hospital for a few weeks then my risperdone was upped to 2 mills a day and it has been helping I still take it though I had to go to a summer day program at Pierre Janet that is a mental hospital the best thing I can reccomend is therapy with a psychiatrist hmm sage is your child attached to home and you and has he had to miss and school cause of his touretts?

                    Comment


                    • #11
                      Re: Sometimes, medication isn't the answer.

                      Hi gaurdianAQ,
                      Yes my son has missed a lot of school. He gets kicked out on a regular basis. The other kids target him often and seem to find it entertaining to upset him and watch him be the only one who gets punished. They even kicked him off the school bus for a couple days last year, because he was whistling and then moved to a different seat. This was caused mainly by being on a new med (which was stopped after getting Drs permission), but the school just went along with the bus driver even though he couldnt help it as it was caused by the meds(the bus driver wrote "if I let him do it all the other kids will be doing it too"). He has proved to the school (and himself) in the past that its not just him that is the problem, as in Grade 5 he went to a Waldorf school from January to June and really did very well there. It helped him feel better about himself again and I saw a much happier, relaxed person(he was not on any meds while there). Then in September he went back to public school and once again, they just pretty much destroyed him. That was this past Sept., they put him out for the year by Jan 06, and in the end I was given a work package to home school him. He completed one subject but not the other (the math seemed to upset him), and he's been placed in grade 7. We're not sure where he will go to school this year. The local Waldorf school only goes to grade 6, and I couldnt afford it if they did have grade 7. We are going to a neurologist this week, but I'm not sure what good that will do (been there before and schools don't heed any of the advice she gives) and the only other thing she was suggesting was a trial of something natural like Efalex. I've already bought a bottle but waiting until after seeing her to try it. So that's where he stands now, and the Efalex can take months to get into the system I've heard, and I don't know what would come after that if it doesn't work, that's about all that's left.
                      Sage.

                      Comment


                      • #12
                        Re: Sometimes, medication isn't the answer.

                        Hi Sage,

                        . The other kids target him often and seem to find it entertaining to upset him and watch him
                        I am so sorry that he gets picked on. I know first hand the pain involved because my son gets picked on all the time at school.

                        We drive our son back and forth to school and if we can't pick him up then I pay the babysitter to do it just to avoid the problems with the bus system.

                        Can I suggest that you have another talk with the school namely the principal, his teacher, and the school nurse and talk about making this school year work better for your son.

                        Let us know how it goes.

                        Comment


                        • #13
                          Re: Sometimes, medication isn't the answer.

                          Sage.... I don't know what to say. That school sounds like a terrible school they should understand that your child can't help it. You should see if you can set up an IEP for your child to take a taxi and also maybe go in a special class or maybe there is a place like Pierre Janet it is a hospital for people with stuff like that but its also a school and the teachers would understand the tics

                          Comment


                          • #14
                            Re: Sometimes, medication isn't the answer.

                            Grades 7 and 8 are awful. Seriously, awful. It's not a great place for any kid, especially one who has Tourette's Syndrome making them stand out.

                            I think around Grade 10 is where it really starts to get better, since most kids tend to "grow up" a bit by this point. I don't know if home schooling is an option for you, but it's one that some people choose in these kind of situations.

                            Also, for those who aren't certain of his diagnosis -- suggest coming to nearby Tourette's Syndrome support groups, or doing something to learn more about it anyways.

                            Tell them, "Sure, maybe I'm wrong and he doesn't have it -- but think of how bad it could be if you're wrong and he does." It's not a good thing to reward a kid who's faking an illness or problem for attention, but it's a horrifying thing to scold a kid who is exhibiting syptoms of a disorder like TS.
                            Colin

                            Comment


                            • #15
                              Re: Sometimes, medication isn't the answer.


                              Sage:

                              I regret offering you a belated welcome. I have been off the forum and missed your intro.

                              In connection to your experiences I feel like I am reading my own journal on my son. It sounds by your postings that you have several issues to approach. Maybe I can offer some hope in my own experiences.

                              My son is 13 and when preparing to move to a new school I did my homework to protect him from all of the abuse and neglect he received from the previous school system he attended.

                              I scheduled a meeting with the principal, printed information about TS & TS+ from this website and already made contact with a in-service volunteer.
                              I had to educate the principal first, she was receptive and open to learning more about my son and what he needed. I provided the link to our website and emailed sections of information to her to read.

                              I was very thankful for jumping that hurdle successfully since I was prepared to go to the school district if I did not get the results we needed.

                              In our case the school was more then helpful and is 150% of the reason my son can attend school all day now without issues.

                              We do not have an active chapter in our city but the national office provided a contact number & name to reach. They referred me to the in-service volunteer that lives further away. He not only did a program for the students but provided one during a PA day for all the staff members. He also offered us an opportunity to join his group and keeps me posted on activities for the kids.

                              Everyone saw the battle we lived with last year trying to adjust schedules, medications and removing triggers for his tics and out bursts. We have come a long way with diet, redirection, and open communication. Kids don't bully him in school now and he plays an active role in class. He has self-esteem.

                              In regards to finding a physician that understands TS. Our school social worker knew of one that focused on TS+ and I made the appointment with our family Doctor and requested the referral be made by him. He admitted he needed help with medications and what we were living with he was not equipped to make decisions on. He sincerely wanted to help us and get some help for himself. Funny, he did not even know anything about the Doctor but we got the referral and our world changed for the better. The entire process took five months and a lot of calls but I don't regret it.

                              Keeping a journal really helped when I had all that paperwork to fill out for the specialist.

                              I understand the statement you made about the counselor...we have had one that thought our son would never live a "normal" life and was ready to throw the towel in. He even recommended institutionalizing him once he was older. It was very upsetting for us and even more so for my son since kids with TS+ tend to be more sensitive and pick up on others feelings like a sponge.

                              The counselor was surprised I would drive a long distance to see a specialist. I still have to deal with him at times for referrals or programs and find myself putting him in his place. He always seems to find the worst in life but maybe he is tired of his profession and just burned out. If he ignores my call and I need a referral or appointment for my son I call every day until he returns my call now.

                              I found in my own situation that I had to be the advocate for my son. It took a lot of fighting the system to do it but now people comment that if you did not know my son's medical concerns or background you'd never think he had TS+

                              For us 8th grade is a great experience and I am currently planning his first year of High School.

                              Once my son understood I was fighting for him and better understood his TS+ he took responsibility for his behavior he could control and communicated about the actions he could not. This made them easier to live with and in some cased reduced them.

                              We will provide any direction and assistance we can so that you can make life better for your son. It is an up hill battle when it feels like no one will help you but life will improve.

                              I hope you are able to visit the forum often and keep us posted on your progress.
                              PJK

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