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Hello I am new here and need advice


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Hello, I have been to this site a few times and decided to post today to try and get some advice.

 

My name is Joann and I am 27 years old. I have what I assume is Tourette's syndrome, but I have never been diagnosed. I don't think I really want to be, atleast not by a traditional doctor anyway. It all started when I was five my mother noticed that I started making little humming sounds occasionally. My parents never really had a lot of money, and they never took any of us to the doctor very much anyway, unless we were bleeding or had a broken bone, ect., so I was never treated. Over the next five or six years I had a series of tics show up- they would come and go. I had the humming, jaw popping, neck and side twitches, sometimes even finger bending. Usually they would continue until they really began to hurt me, then I would take real notice and concentrate on stopping whichever tic I was having at the time. Sometimes it would go away, or just manifest as something else. I wouldn't say that my tics have ever been particularly severe, and I was always able to control them in public and at school. Around age twelve my tics went away completely, but I did start picking at the acne on my arms a lot, which I've read could be a symptom of TS. I still do that somewhat, often unconciously, but I am getting a lot better with it.

 

When I was 18 I got very sick with bronchitis and a stomach flu at the same time. I took some antibiotics and stomach medicine. I also took some of my father's cough syrup with codine. I don't know if it was the sickness, or the medicine or the codine, but within days I became very seriously depressed and could not sleep at all. I had no reason to be depressed, my life was fine. Mostly I focused my depression on the fact that I couldn't sleep. The doctors put me on antidepressants and in a month or two I felt much better. I have never felt that depressed before or since. It was very unusual.

 

I took the antidepressants for about a year. After I stopped taking them, the tics returned. This time it was different, the occasional humming was back but I also had echoalia (sp?) - I just had to repeat certain things I heard on TV or elsewhere. This lasted for a few months. When I went back to college I noticed I was having more OCD like symptoms - I had to do things a certain way or repeat them over and over. When reading I would have to stop at the end of a line and read it again. This really hurt my school work and I was really mentally tired that year, but glad to be off of the meds.

 

The ticcing pretty much went away later that year, especially when I found a new boyfriend. I always seemed to be able to control myself around him. And I still had no problems in class. But I had a lot of fear of the depression returning. At the beginning of my Junior year in college, after some family problems and other stresses, it did. But it wasn't like before, mostly I think it was a combination of the stress and the fear of the depression. Anyway I decided to take the antidepressants again, I kind of used them as a crutch to help me through school and my problems.

 

Now, even though I was on the meds, the tics would still come and go. Again, nothing severe, humming, mild neck bending, teeth clicking, coughing, sniffing, blinking. I only ticced when alone or with people I was comfortable with. I was unhappy in school so I dropped out and took at job at a store in my hometown. I was pretty happy there, and was nearly tic free for a long time, probably about a year. Around Christmas of that year I broke up with my boyfriend and about a month later the ticcing started - it hadn't been this bad since I was a child. I was having a harder time controlling it at work. I was getting more comfortable with the people at work too, so that probably contributed to it.

 

I met a new boyfirend and things moved along quickly. At first I was able to control it around him. One day I was doing the little hum really softly at a visit to his parents house - and I noticed he did it too. I was so upset - I thought he was making fun of me! When I confronted him about it he told me that he has suffered with tics much the same as I have - but his were even milder than mine. He has more OCD than I ever did though. Later that year we were married. Over the year that followed I really began to notice that my tics happened differently under different circumstances. I transfered to a job working in the backroom of my store. It was always very, very dusty. When I was back there I would always have a throat clearing, sniffing or coughing tic. It got pretty severe. I did it all the time. People noticed, but the people that knew me and were my friends didn't care. At home the tics were minimal and different. More humming than anything respiratory. I also began to notice that it happened more when I was riding in a car.

 

When I became pregnant the tics stopped completely. Like someone turned off a switch. I have wondered if it was the prenatal vitamins (regular OTC store brand) or maybe just hormonal changes. The latter might also explain why the stopped during puberty, I have thought. It was a good time for me. In the previous year I had transfered to a job in the outdoor garden department of the store. During the summer, especially when I was around the plants or fertilizers, I would tic a lot. But in the winter it was much better. My pregnancy was from August to April, which might have played a factor.

 

After the baby was born the tics returned. It was summertime again at my job and they were pretty bad. I developed this cough (I still don't know if this is a tic or something physical) where it feels like something is stuck in my chest and I just had to cough. I still get that sometimes, but if I cough hard enough, it goes away. I started to get very anxious about my health. All this time I was taking the antidepressants. I started going to doctors to find out about the various aches and pains I was having, especially the cough. I never told them about the tics for some reason - mainly because I knew I couldn't reproduce them there and I knew that the doctor I was seeing would just prescribe more meds and probably even stronger ones too. The doctor couldn't find anything wrong with me and told me that I should expect to feel so sick and tired after pregnancy and birth. I read somewhere that antidepressants can cause neurological problems like ticcing, so I stopped taking them. I was fine without them and I have been ever since, maybe even better because I don't feel like I am dependent on pills.

 

Anyway the ticcing has remained with me since my son was born. Worse in the summer than winter, worse in places I am comfortable with, better at home than at work. I briefly took a part time job in an office building - I didn't tic once there. I have noticed that in the morning I am fine until I eat something or go outside. Or get in the car. Have had problems with the car for the past four years. Right now I am having problems with blinking (my eyes always hurt), eyebrow raising and teeth clacking.

 

So what has driven my to seek advice and solutions - vanity! These tics I have now are starting to wrinkle up my forehead and eyes really badly. The dentist says he can tell I am grinding my teeth and damaging them. My eyes are always red and the dark circles I've always had under them are so much worse. People stop in thier tracks to tell me how bad I look. They look at me like I am sick or on drugs. I have no confidence in the way I look anymore. I went to the doctor about the eye redness (my eyeballs- not from the blinking I think) and the circles and the allergy like symptoms I've been having - she told me to take Claritin and buy some cover-up. (Cover-up just makes you look like you have a lot of make-up under your eyes.) I am really tired of this and I want a solution - not just more drugs. It seems really apparent to me that this is being caused by something in my enviornment, in the food or the air. I have started on a new diet that is cutting out all refined sugar and most white flour and nothing artificial. It has been worse since I started this diet - maybe I am in withdrawl. I had a really poor diet before this. Before this diet I don't think a day went by that I didn't eat chocolate. And a lot of sugar in general. But right now my eyes are so tired and I look so sick and I would like to know what to do.

 

I am very interested in finding a natural doctor that I can tell all this to who will not simply prescribe anti-psychotics. I would like to have allergy testing too, from a doctor that understands. My niece and two cousins have been diagnosed with Celiac. My GP brushed me off when I told her about this and I asked for a test. She said the relation wasn't close enough and if I wasn't having stomach problems I shouldn't worry. I feel like such a fool around doctors because of the experiences I have had. Looking through your website I have found a doctor in my area (Kansas City) - a Dr. Willoughby in Liberty, MO. I was wondering if any of you knew of him or could tell me what a visit to an alternative doctor like that might be like and how much it might cost. Doctors make me very nervous. Also, all of the supplements you talk about on here seem so complicated I don't even know where to begin with them. Any advice about that or anything would be appreciated.

 

Thanks for reading my life story. Sorry it was so long. I hope I can finally find some answers.

 

Joann

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Joann,

 

It really does sound like allergies to me. I won't have time to respond to you until later, but you really should start looking into Caryn's posts and threads, especially since you have Celiac relatives. Not to say you have it, but it is definately genetic. Caryn has referenced quite a few studies that debunk the theory that you must have typical digestive issues to be Celiac.

 

I'll be back later!

 

Tami

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Visiting a naturopath sounds like a good first step for you. Tell them you are interested in finding out if your tics are allergy related. I think they will take it from there. But these visits will most likely be out of pocket and can be more than $50.00 per visit. Here in NY, I pay $90.00 for a 1/2 hour visit, with the initial consult about $200. You could also visit traditional allergist and that will probably be covered by insurance, however, I don't know if you should mention the tics, for the tests may not be covered if they state it is for that reason. You'll say that you have a constant cough and watery eyes.

 

I am a mom of a 9 yr old boy with tics/ts, and I have had some tics and compulsions myself as you, but never vocal or eye blinking, mostly tapping things. How old is your child now?

 

Faith

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Thanks Lurker and Faith for your responses so far. Ever since my family members have been diagnosed with Celiac I have been wondering if I might have it. One of my cousins had no idea she had the disease until she collapsed at the hospital one day (she is a nurse). She is in her 30's and they say that the gluten damaged her body so badly that she has the body of a 60 year old. They do not expect her to live to that age.

 

My son is 2. He is doing fine so far except that he has those same dark circles under his eyes that I have. He looks very much like I did at his age in that respect. He is also growing slowly. The doctor says that is just because my husband and I are small people ourselves. This could be true, I suppose. She said that he is too young to test him for celiac.

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Joann,

 

welcome. First I want to say I was so happy to read you and your spouse found each other. it is one of those worries I have for my son, will he find someone.

 

I wanted to let you know our dr. is so nice and we never get the feeling she does not want to help. She will do any test we want. I hope you have that same luck with this Dr. you're looking into.

 

Have you ever thought about taking gluten out of your son's diet just to see if it helps the circles? He is still so little you may have an easier time changing his diet then some of us with older childern.

 

I wish you the best of luck finding clues that will help you and your whole family.

CP

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Ooh! Faith's right. Doctors don't authorize allergy tests for tics. Complain about your throat clearing/itchy watery eyes/sniffling/allergic shiners (dark circles) If you see an allergist, tell him about the Celiac relatives too. Allergy testing should uncover wheat and gluten sensitivities within the regular food panel. You can follow up with genetic testing for several of the known Celiac genes later.

 

I think you are a good candidate for a gluten free trial, but with your family history, I think it is very important that you pursue the allergy testing before or within the first several months of going gluten free. Once the exposure is removed for a period of time, you are less likely to show reactivity on the allergy tests (false negative).

 

My son always had allergic shiners. They are gone now. I don't know if it was because we removed all of the foods he is sensitive too (gluten was off the chart) or because he got glasses (reducing his eye fatigue <_< ).

 

Tami

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I called the doctor today and made an appointment, but I don't know if I'm going to be able to keep it because the visit wil probably cost me over $1500 total. I also called an allergist and their prices are much more reasonable and covered by my insurance. So I think I will go there. But I am nervous about what to tell them to convince them to do the testing. I don't understand why, if I am paying, I can't have whatever test I want. The receptionist said I will have to talk to the doctor and he will decide what tests to do. So I guess I'll see how it goes. I hope I am not wasting my money.

 

Thanks everybody,

 

Joann

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Joann,

 

I think you are wise to start with the allergist. What kind of insurance do you have? When is your appointment? I may have an idea for you.

 

 

My appointment is on July 7th. I have Blue Cross Blue Shield insurance - it's nothing special and I expect that these tests might not even be covered. But the receptionist told me that tests usually cost $300 to $500 without coverage - which is so much better than the other doctor.

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Has anybody had luck getting a GP to order allergy testing? Traditional allergists?

 

I used a Naturopath. It was easy, because it was the first thing he wanted to do. I have heard of people having their chiropractor sign for allergy tests. I suppose "open-minded" is the quality you are looking for in a doctor, Joann.

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  • 4 weeks later...

CSP... hi... just like to comment on what you wrote about hoping your son will find someone later in life. my brother has had tourettes rather full on... he was never without friends and has been married twice to lovely ladies. neither of the marriages broke up over tourettes, so in this case it hasn't been a hindrance. He also holds down a great job.

However, i know how you feel as my 8 yr old has tourettes and i often have those same fears. but overall from everything i have read most seem to marry and have children regardless.

just thought i would share this with you, thanks, Lyn.

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