evol

Hello. Just wanted to share my story. I am 42 and have moderate Tourette’s. Tic disorders run all throughout my family, I believe on both sides but much more prominate on my moms side. It was mild from 7-14 and then it really amped up from there. It went from about a 2/3 to a 6/7. I did have a lot of strep and ear infections leading up to the increase. I never got diagnosed. My parents “threatened” to take me to the dr but never did. I definitely didn’t receive the support I should’ve but, then again, I didn’t want to face it. just learned how to cope and manage. I do wish I would’ve been given the tools to at least be able to talk about it. I was always hiding It. The few times someone would ask, I would quickly change the subject. I was never bullied (to my face) and had friends and boyfriends but it has affected my confidence for sure. It’s still just as active now as it was 20 years ago but the worse years were high school and college, most likely due to the stress and trying to sit in class and not tic all day. I have 3 kids who have all expressed symptoms. The genetic factor is strong. My oldest daughter had a couple mild tics that started at 4. When she was 10 she had a nose crunch that was getting worse and I noticed she was drinking a lot of milk at that time. We eliminated milk and it disappeared almost immediately. She has virtually no tics at 16. My 12 yo son started an eye roll tic at 10 and is transient. It was there for a year or so, on and off but now I only see it when he is stressed. My 11 yo daughter would qualify for a Tourette’s diagnosis as of the last few months. She’s had several different motor and vocal tics since 7 (usually just one at a time) that have increased and are changing frequently. They still pretty mild overall but are increasing each month. She also has always had anxiety. We have not been to a dr yet but we tell her if she feels bothered enough by them to let us know and we can go. We’ve tried magnesium and fish oil and other various supplements....can’t really say if I think they’ve helped or not. I do notice an increase when she is eating junky food. I will say, I sometimes feel like I’m living my life waiting for the other shoe to drop. I never quite let my guard down even after dealing with it for so long. I try to remind myself “be grateful for what it is, and what it is not”. It’s not a fun disorder by any means but there is no way to predict the future so all we can do is take it one day at a time. I completely understand the panic and worry. If I could take on all of my children’s symptoms I would. The best thing you can do is love unconditionally, support and encourage, and try to keep your head up.

Loving the waning phase right now. So much less stressful. You feel like things are almost "normal" but you know deep in your brain it won't last. Or will it? Wish I understood why the waxing and waning happens.

My situation is probably unique. Yes, I have undiagnosed ts. Well, I saw a doctor once at age 21 and he prescribed clonidine. I took it for a while but it made me soooo tired that I just quit. Started ticcing around 7 and turned into full-blown ts around 14. It was never really addressed growing up other than my parents telling me to stop. I think they were just too embarrassed by the whole thing. They would threaten me by saying "if you don't stop by the end of this year, we are taking you to the doctor". I didn't want to be labeled as different or come to terms with the fact that there was something really wrong with me, so that scared me. I don't think that's all bad, however. I was very social and fine with my peers and am sort of glad I didn't have that "label". My late teen years and college were the worse, probably from stress. Sharing a dorm room was very difficult without having any privacy. I tried my hardest to control it and don't think I would have so much if it was out in the open and I think my symptoms would have been more rampid. I think it's an aweful and bizarre disorder to have in that you appear normal but have to contort you body in ways so you "feel" normal. It's been personally a difficult journey but in all actuality, I get along fine, aside from a small social anxiety issue. Nothing a glass of wine can't fix. My husband's mom has a chronic tic that comes and goes and his brother has chronic tic/OCD issues and my husband has some compulsive issues. None of them ever talk about it either. My husband's point of view is that everybody has something and no big deal. I don't think he knows how bad it can get and that's where I feel like I'm carrying all the stress, anxiety and burden. Even though he was with me since high school and has seen me for who I am, I've never talked about it with him so he has no idea what I've really gone through. I've gone on so long without talking about it that is seems like I have this huge secret. This forum is the only place I've ever talked about it and it feels so good knowing there is support out there. I keep waiting for the day that I have to have the "big talk" and I have no idea how he'll react. I think that is why, for me, the stress is doubled because I not only have to deal with my children's issues but the role I play in all of it. At this point, I don't even care about myself, I just want my kids to be healthy. I would take on symtoms a million times worse if it could spare them. I haven't ever mentioned the ticcing to my dd. I don't want to make her self-conscious about it and right now it's managable. It it worsens, then I'll deal with it then. Since my symptoms didn't worsen until I was 14, I'll be hanging on for a while. I struggle every day with the question of was it right to have children knowing I could pass this on to them. It's a gamble and 20 years from now I can better answer that.

I completely empathize with you. We have tic disorders on both sides of our families so when my 8 year old dd started ticcing at 4 1/2, my hopes and dreams of not passing the disorder on to my children vanished. My 4 year old son has exhibited certain behaviors at a very young age that make me convinced he will also end up with "it". I also have a 3 year old dd. I wonder, "will all three of my children have this dreaded disorder that I know I directly contributed to?" I think the worse part is just waiting for the other shoe to drop and wondering what coarse it will take. I agree that it is so emotionally draining to go through this process, and the thought of having to go down that road with another precious child seems impossible at times. I try so hard not to dwell on what might be and be fortunate for how bad it isn't. One day at a time, right?

My son (now 4 1/2) has had very similar symptoms and I have been trying to find similar stories to relate to. He started wiping his mouth and nose with his shirt when he was 2ish. I thought it was associated with having colds but have determined that's not the case. This "tic" has waxed and waned and now he just seems to touch his face a lot (all over but mainly his nose and eye area) without really scratching it. Sometimes he pulls his lower eyelid down and does a little nose-stretching tic, but not very often. Tic disorders run in both sides of our family and his older sister has had a few small tics so I feel like I am waiting for the other shoe to drop. I have always wondered if the "touching behavior" was a tic or not and have concluded that it must be a form of tics/ocd or precursor to tics. I have noticed it's been worse the last month and think it correlates to environmental allergens. I don't know if this helps much but it's sometimes nice to hear about similar experiences. I wish you well.

My three year old son has always done certain behaviors that I wonder if they may be precursors to tics/tourette's or not. He has very sensative skin and from the age of almost 1 seems to do things repeatedly like wiping his nose (especially if he has a cold), wipe his mouth (especially when eating), rubs his eyes, or he even just touches his nose a lot. For almost a half of a year he did do a nose twitch but it seems like it was associated with the winter/cold season. Although these are not "classic" tics I feel like I am waiting for them to develop. I wonder if he gets those urges and doesn't know how to soothe them by ticcing yet. Perhaps his skin is just sensative and itchy but I don't notice other children doing this behavior so there has got to be something there. Tourette's runs in the family so I hate that I am just waiting for more symtoms to develop. Just curious if anyone else has any experience with this.

Hi there. Although I cannot offer any advice, I am going through the same thing you are. I myself have had it since about 7 and my husband's side of the family shows signs of a tic disorder. I feel I am constantly waiting for the other shoe to drop. My oldest daughter, 7 years old, has had some mild tics. They come and go. So I know already she has the gene(s) and I am basically waiting for her symptoms to worsen (or hope they don't). My son, 3 years old, also had shown symptoms since very young, although his aren't typical yet. He worries me the most right now because of how young he was when I started noticing things. It's very stressful. There isn't a day that goes by that I am not fretting about them. I try to live in the now and not worry about the future but that is very difficult. I know this doesn't offer you much help, but I want you to know I understand what you are going through.

Age of onset: 7 years old with minor tics/ 14 years old with ts symptoms Current age: 32 Tic frequency hasn't changed, just the nature of them. Easier to deal with them as an adult.

My dd was doing this as well when she was 4 1/2. Even her preschool teacher noticed she was going to the bathroom a lot. I knew she didn't have a UTI so I was very bewildered at the time. It lasted for a few months, on and off, then eventually went away. Looking back on it, it coincided with her first tic outbreak. At the time, I had no idea what was going on. After researching it, I am finding that it is not uncommon. I think the line is blurry when you are talking PANDAS vs. tourette. For us, there is definitely a genetic predisposition, however I am finding my dd tics more when she is exposed to an illness. I am not sure if this helps you any, just thought you might want to hear about other experiences with this. Give it time and it will probably subside.

I am 32 and have tourettes (possibly PANDAS related). I have sufferred from headaches my whole life starting at a young age (elementary). I am not sure if it is related to the ts considering 50% of people suffer with some form of headaches. I can remember having them chronically in junior high school and college; perhaps stress related. I actually feel like I am going through a bout right now. I have been getting them every day at the same time for over a month. They have never been horrible-more tension-like rather than migraines and ibuprofen helps. I think it's important to rule out anything serious. If doctor says it is safe to give medicine frequently for them (I think ibuprofin helps much better) than I would because dealing with a headache on top of everything else is a pain (no pun intended). I have researched that 5% of the general population gets chronic headaches and that sometimes they just have to run their course. Considering all that can be involved with tics/tourettes/OCD related issues, it's amazing that more don't complain about headaches!

I had chronic strep throat growing up as a child; sometimes the antibiotics couldn't get rid of it. I do believe my ts is genetic, however, after reading everything on PANDAS, I do think there is still a link between the two. When I am sick (depending on how ill), I will tic less frequently simply because I think my body is tired out. I was on antibiotics for, what seems like my entire childhood into adulthood, and I don't remember the antibiotics affecting me in a positive way. I wonder if I just have built up a resistance to them. Is there any evidence that if you treat PANDAS immediately you may prevent a life-long coarse of ts?

Thank you all for your responses and support. I think, as you all know, in the beginning you are terrified about what may come of the future. But then you get acclimated to the current situation and things calm down. I am trying not to wait for the other shoe to drop and just live in the now. My daughter is doing fine; just a nose tic right now, however we are reaching that one year mark. My son is so young yet, it's hard to tell if what seems like a tic is or not. He has had 3 different occurences of what seems like tics (eye rolling and nose tic) that have only lasted a few weeks each since he was just over one year old. This site has been so helpful in so many different ways. I'll keep you posted:)

I had just one or two simple nose tics that started around age 7. When I turned about 14 is when the full ts symptoms started to show. I have had mainly motor tics with a few simple vocal tics. When my symptoms first presented, my mom would get mad and tell me to stop. She even punished me once for them. Then, as I grew older, they were more embarrassed than anything, which is why I don't think it was ever brought up to doctors. (Remember, this was way before the internet and access to so much information.) When I was in high school, my mom gave me an article to read about ts, that she had gotten from somebody else, but it was never discussed. I did go to the doctor specifically for it once when I was 21 and always wished I hadn't because now there was record of it somewhere. I guess I was pretty good and supressing my tics in school and around my friends(but not always). I only ever had one friend ask me about it once in passing, and I avoided the topic. Nobody else has ever said anything to me, even though I would consider myself to have moderate ts. But I am sure it has been talked about behind my back. I realize that all my shame and trying to keep it a secret came from my parents, because it was so obviously embarrassing to them. I guess the good thing about that is I know I wll never make my children feel that way. Thanks for taking an interest in my story.

Thank you so much for your reply; it was very helpful. I must say, part of me is thankful that my ts was a secret growing up because I believe it forced me to suppress my tics more (I know that is not always a good thing), but it allowed me to experience a positive social upbringing which I honestly don't know that I would have had if my ts was out in the open. I like to think that your peers are excepting and understandig of everyone's "differences" but I am not sure that is always true, especially with children. I was just me, not me with ts. I think if it was out in the open, I would express my tics a lot more and be more symptomatic, which I don't want. Does that make sense? That goes the same for my children. I fear that a label will stigmatize them. If symptoms are not severe, I don't see a reason to inform the "world" about the ts label. If the symptoms are severe, obviously society would benefit from an explanation and education (although I don't know if this would eliminate peer teasing anyway). Obviously, I still have not come to terms with this burden and I need to. As far as my husband goes, I worry that he would feel so betrayed that I kept this from him, not necessarily that I have ts. I feel like I tricked him into marrying me and having children with me by not giving full disclosure. I keeping waiting for the other shoe to drop, and that is when I will have to confront this issue. Being open and honest with this forum is my first step and it has been very helpful. I am sorry to have droned on.