I developed a blinking tic at 17... do I have TS or something else?

[guy123]

(Sorry if this is long)

 

When I was 17 I decided to get allergy shots because one of my friends had used them with great success. Shortly after I got all the testing and started getting the shots, I noticed that I started blinking a lot. They were hard blinks, like a blinking tic (you know where the eyebrows come down hard in addition to the blink). It felt to me like I had something in my eyes and blinking hard was the only way to "relieve it." The allergy doctor didn't know what was going on. I went to see an eye doctor who said I had rosacea in my eyes and gave me some eye drops, but that didn't relieve the sensation I was feeling. The timing of all this could just be a coincidence, tho. I never finished my course of allergy shots.

 

Fast forward to today... I'm 27 (so 10 years later basically) and I still have it. Over the years I have become fairly good at masking it. I have found that, instead of doing the hard blink (which obviously draws attention to me and therefore is undesirable), I can close my eyes normally and roll my eyes up into my head (while my eyes are closed) and that relieves the sensation almost as much as doing a hard blink. This is what I try to do at work, in public, etc.

 

I guess during the last few years I've just stopped caring. Occasionally people ask me "are your contacts bothering you?" (I don't wear contacts), and I take this as an indication that I'm blinking harder than normal and need to become more aware of it, and I reply to them "yeah... they're so dry I hate it!"

 

I notice that some days it's much worse, and other days it's a bit better.

 

Recently tho I've just started to become annoyed with this. So I started doing some research and you know how that goes... you start freaking out that you have all of the conditions that you're reading about.

 

I was almost positive that I had an "eye problem" and not a tic or TS because I felt a sensation in my eyes, like there was dust in them or something. But then I read that TS sufferers and people with tics describe their blinking as "to relieve an unpleasant sensation in the eyes," and that made me start to worry that I might have TS. Then I read that TS is usually diagnosed young, and often times the tics go away when the frontal lobe closes. So I thought it was weird that mine began when I was 17.

 

I've also noticed that I have another bad "nervous habit;" I chew on my tongue. But I've become aware recently that when I find myself doing this, the need to blink is reduced. Let me clarify here: I can't consciously decide to chew my tongue and have that reduce the blinking; it only reduces the blinking when I find that I am unconsciously chewing on my tongue. Like "oh, I've been chewing my tongue for a while... and I haven't blinked in a while." I've experimented when consciously chewing it when I feel the urge to blink and it doesn't help. This makes me wonder if maybe it's an anxiety-related thing. I'm very high-strung in general.

 

I've read that TS tics seem to come and go... one will come for a while, and then be replaced by something else, and then that one will be replaced by something else, etc. This makes me curious because all I've ever had is blinking. This also makes me terrified because what if one day my blinking, which is somewhat possible to control/make excuses for (allergies/contacts), is replaced by something much worse (like shoulder shrugging)? I literally had a mini anxiety attack from thinking about that today... and worrying about stuff doesn't make it better.

 

I've also read that tics which persist into adulthood usually become permanent.

 

And I've read a lot about how there's not really any medication for tics, and some of the anti-psychotics result in TD (Tardive Dyskenesia) which is possibly worse than the original tic.

 

So I've finally decided to make a doctor's appointment and talk to him about what's going on.

 

Before I wanted a cure for this blinking (I have crow's feet wrinkles at 27 years old from blinking so hard for the last 10 years). Now, I've decided that if I have to live with it it wouldn't be so bad, I just don't want it to manifest itself as another, worse tic (like shrugging). I am seriously terrified of that. I've been worrying about that a lot today and I keep feeling this pressure in my trapezius muscles (the shrug muscles) and feeling like I need to shrug but I'm afraid to because I don't want that to trigger a tic. I'm sure it's just in my head because of all the research I've been doing recently tho.

 

Like I said, sometimes the sensation to blink is reduced, but it never "goes away." I have a video of myself in college where we had to videotape ourselves being interviewed (it was to practice for real job interviews) and I am blinking like crazy in that video

 

I can't pinpoint any triggers for it. I know some people say cigarette smoke makes theirs worse, or stress, or certain foods, or whatever, but I haven't noticed any correlation between my blinking and external or internal stimuli.

 

I did notice that it may have been slightly reduced when I take Zyrtec, but after reading about all these side effects with Zyrtec on the web, I'm afraid of taking that anymore, too.

 

Oh, I also have (self-diagnosed) OCD. Compulsions that I have to do something a certain way or bad things will happen. However, in the last few months, I've made some behavior modifications to help eliminate this... basically when I feel the need to do something I know is stupid, I forcibly prevent myself from doing it. Like for the longest time when I was washing my hands I had to pump the soap 3 times. So I would force myself to do it 1 or 2 or 4 times. I've read that OCD can sometimes be accompanied by tics so I'm just throwing this out there.

 

So what do you think I have? A nervous/anxiety tic? TS? Something else?

 

Thanks

 

edit - sorry, one more thing I just thought of that might be relevant. Sometimes when I'm resting or about to go to sleep, I'll have my eyes closed, but I'll still feel the discomfort in my eyes/eye muscles, so even tho my eyes are already closed, I still "blink" (squeeze them tighter causing my eyebrows to come down) to relieve it. That makes me worry that it is a tic and not some eye condition.

[lurker]

Guy,

 

Sounds to me like you have one or two "chronic" tics. The blinking for ten years sounds really stable. Also, it sounds like you are freaking out -- this stuff is scary.

 

It sounds like you have sensitive eyes. You may want to have a visual exam to rule out focusing problems, which would cause visual fatigue. If your eyes feel dry, experiment with moisturizing drops. You may want to evaluate your computer/television habits. Don't watch tv in a dark room; sit ten feet away; lcd is better than regular tv. Set the refresh rate on your computer to the highest rate; maybe consider a "glare guard" if you use it frequently.

 

Also, if all you have is a very stable eye-blinking tic, you may be an ideal candidate for botox treatment. This would make the tic much less noticeable. I think half of LA walks around with this stuff in their faces now. (Just an opinion.)

 

It sounds like you've scared yourself real good reading about all this. The tightness in your shoulders could just be tension from all this stress and likely a mind game. I remember seeing a scene in a movie (can't remember which one) where the character was somewhat neurotic. He watched a woman in a coffee shop spill some coffee because she had a Parkinsonian hand tremor. In the next scene, he could not get his coffee to his mouth because he was spilling so much. Your mind is a powerful thing. I am "high strung" too, so I feel your pain.

 

Tami

[guy123]

Hi,

 

I just thought of some more info that might be relevant:

 

My blinking tic seems to go away when I'm in important medical situations. When I go to the dentist, for example, I don't blink much when I'm being worked on.

 

I went to the hospital a few months ago with the stomach flu (severe dehydration: I lost 14 pounds in two days and I'm skinny to begin with), and pretty much the whole time I was there I didn't notice any hard blinking at all.

 

I've read about similar situations involving kids who go to the doctor for tics and the tics "mysteriously disappear" while they're in the office (which annoys the parents because they doctors can't see the problem).

 

Other info about me:

 

I'm naturally thin and have a high metabolism. I'm also a weightlifter and have to eat around 4,000 calories a day just to maintain my weight. The doctor has tested my thyroid and everything and it came out fine. I have taken various multivitamins throughout the years and none really seemed to make a difference in my blinking (I've seen some posts about increasing certain vitamins and/or minerals and it having an effect). Note that the blinking tic started before I ever started eating a lot or lifting weights or taking vitamins or anything. I just figured I'd mention this since it kinds of separates my lifestyle from that of regular people (the high metabolism and high caloric intake).

 

 

Also, if all you have is a very stable eye-blinking tic, you may be an ideal candidate for botox treatment.

 

You know, I was thinking about that. But my tic is like this need I have to contract the muscles (blink). Doesn't botox paralyze muscles? So wouldn't that prevent me from being able to contract it? I can imagine that increasing anxiety by about a billion percent! And I'd also be afraid my body would compensate in some other way (developing other, worse tics).

 

Oh, and I didn't even know what PANDAS was before I came here, but now that I think about it, I had mono around the time that this whole thing started. Could mono cause PANDAS or is it only strep?

 

Oh and for what it's worth I've never really struggled in school. I graduated from high school a semester early and in elementary school I was always in advanced groups. College was fine. Just thinking about the ADD/ADHD stuff I'm reading.

[Caryn]

Guy,

Mono would be a significant catalyst for the onset of an autoimmune disorder. In our case my ds (now 5 1/2) developed tics after his preschool vax's. The short of it--

we recently discovered that he has the celiac gene and it is our understanding that his diet along with the vax's may have contributed to the onset of his tic disorder. His G.P. has since diagnosed him with celiac. His symptoms started with eyeblinking (hard blink) and continually worsened over time until we changed his diet. He is now stable for about a year and has greatly improved. Not the case for all people suffering from tics but made all the difference in our situation.

Take a look at some of the signs and symptoms that are common with undiagnosed celiac and see if there might be a reason for you to look into it further. When you mentioned problems with gaining weight despite diet and a high metabolism it jumped out at me. You can have celiac without digestive problems. They call that silent celiac. Celiac is connected to schitzophrenia, OCD, ADHD, chronic headaches, depression, etc..... as well.

 

If you want to read our story, it is at:

scientists have discovered that celiac disease can be the root cause of most neurological disorders

Best of luck figuring it out!

Edited October 26, 2012 by Caryn

[guy123]

Interesting. I've never even heard of Celiac before. Time to do research.

 

Oh but I've always been thin no matter what I ate, even before I ever had mono.

 

edit - I read the wikipedia page on Celiac (Coeliac) and I saw no mention of tics.

[Chemar]

hello Guy and welcome

 

it sounds to me like your tics were triggered by something in the "allergy shots" or by the Epstein Barr viral infection that causes mono or a combo of both.

 

do you have a record of what was in these shots?

 

You dont seem to have any vocal tics from what I understand? or any other tics?? just the blinking, yes?

 

in that case it does not sound like TS

 

we found L-carnitine (an amino acid) helpful for TS related eye tics

[P_Mom]

Have you looked into benign essential blasphorospasm???

[guy123]

hello Guy and welcome

 

it sounds to me like your tics were triggered by something in the "allergy shots" or by the Epstein Barr viral infection that causes mono or a combo of both.

 

do you have a record of what was in these shots?

 

No I don't.

 

You dont seem to have any vocal tics from what I understand? or any other tics?? just the blinking, yes?

My only real other "tic" could be chewing on/biting my tongue... but I think that's more of a nervous habit.

 

As for vocal tics... not really... if I do it's very rare. Sometimes I feel the need to exhale a certain way before I begin something (such a reading a new webpage, or entering data into a computer program)... but that's almost more like a compulsion than a tic. I'd say it's an OCD thing.

 

I don't think it's a "tic" because it is localized by only happening before I begin something new.

 

we found L-carnitine (an amino acid) helpful for TS related eye tics

 

I will look into that. What dosage? There's probably already some in one of my multivitamins but I will check.

[guy123]

Have you looked into benign essential blasphorospasm???

 

No. Well, yes, but from what I read I thought it dealt with tics/twitches of the eyes themselves. I wasn't aware that hard blinking was part of that.

[P_Mom]

No, not the eyes thwmselves...the eyelids, but, reading your post again, it doesn't seem to me that BEB would apply to you, but, who knows..

[Caryn]

Guy,

I just got my Celiac Newsletter in my inbox from the U. of Chicago.

They have an article about weight and celiac.

 

http://www.celiacdisease.net/assets/docume...ews.v5final.pdf

 

As far as studies about a correlation between tics and Celiac-- I have yet to find any that have attempted to look into a possible connection. I can only say that there is strong anecdotal evidence gluten may be a contributing factor. The type of celiac gene my son has is STRONGLY associated with other autoimmune disorders. This is something not widely looked into but warrants further study. I suppose since diet is the only treatment it puts a damper on big pharma possibly sponsoring such a study.

 

Anyway, celiac has lots of neurological associations including Alzheimer's and Ataxia.

Don't rule out the possibility. That is all I am saying. Made a world of difference in our son.

[iowa76]

It is interesting to see. I have been diagnosed with Celiacs disease for last five years and for the last six months or so i started having TICS in my belly muscle and hip muscles. I get jerking sensation on the right side of my belly and both hips flex, it is very minor though very irritating. I guess i am getting used to it for now. My celiac is well controlled and serum marker TTG now is negative ( from 1:3200 dilution to negative) in five years and i am on stict gluten free diet.

[guy123]

Just an update:

 

I had an appointment with my doctor yesterday who said I had developed a tic but didn't have TS. I told him about some of the research I've done and the different medications I've found and said I didn't want to use an anti-psychotics because of the side-effects (Tardive Dyskenesia), that I was interested in some of the blood pressure medications that can reduce tics (guancafine and something else... probably spelled wrong), and that I had heard that SSRIs can help tics AND cause new ones so I was unsure.

 

I also told him that I've been having anxiety issues recently, and that I have OCD.

 

He decided to write me prescription for Zoloft 50mg, and Lorazepam for acute panic attacks. I've used Lorazepam before so I know what it's like (and how dangerous it can be).

 

He told me that I would probably be on Zoloft for 12-18 months, during which it would correct the chemical imbalances in my head, and then I could come off of it and I wouldn't tic anymore.

 

So I took my first pill last night, and within 1 hour I was feeling kind of dizzy. 3-4 hours later I was nauseous and ended up throwing up and having diarrhea. At night I was unable to sleep, my pulse was racing, my room was spinning, and I was in a horrible mental haze. This morning I had diarrhea some more and dry heaves. I called the doctors office and told them what was going on and they told me to not take any more until Monday, and then only take half a pill, and if I have those symptoms or anything like it to call them and let them know. It wasn't until about 18 or 20 hours after I had taken the pill that the fog in my head started to clear (Zoloft's halflife is 26 hours I think).

 

I don't know that. Last night was one of the worst feelings of my life. I'm honestly not sure if I want to risk feeling that way again.

 

My mom was put on Paxil, which after 4 days gave her a seizure, so she switched to Zoloft and she's been on that for a few years. She says it saved her life.

 

I was looking into non-SSRI medications to control OCD, but it doesn't seem like there are any. As a 27 year old male I'm also quite concerned about the sexual side effects of SSRIs that just about everyone seems to get. Wellbutrin (non-SSRI) seems to be effective and not have as many side effects, but I've heard it can make OCD worse.

 

I'm not really depressed. I mean, I'm not like super happy or anything, but I'm not suicidal. I'm just kinda unmotivated. The only reason I agreed to try an anti-depressant was because of the OCD/tic benefits it supposedly offers.

 

Anyway, just thought I'd update you guys.

[Chemar]

I was looking into non-SSRI medications to control OCD, but it doesn't seem like there are any. As a 27 year old male I'm also quite concerned about the sexual side effects of SSRIs that just about everyone seems to get. Wellbutrin (non-SSRI) seems to be effective and not have as many side effects, but I've heard it can make OCD worse.

 

Hello Guy

you are right to be cautious of the zoloft. some people just do not react well to SSRIs. My son was one(he took luvox)

 

there are very effective non SSRI supplements to help with OCD

here is a bit on them. (One that isnt included there is methionine, which my son has found very helpful)

http://healthlibrary.epnet.com/GetContent....;chunkiid=39026

 

we also have a useful sites and resources sticky on the OCD forum here

http://www.latitudes.org/forums/index.php?showtopic=1963

[efbs]

I am a life long blinker. i'm 35. I don't see it going a way. I used to be a stutterer as a kid and somehow it went away. I also used to shrug my shoulders alot. I used to feel a senation that I have to shrug and that also went away. the blinking although is automatic. I don,t realize I'm doing it unless someone tells me then I can control it by thinking constantly not to blink. years ago I saw a 2020 episode of a famous european soccer goaly that had a blinking problem and had it controled with medication, and it was ts. I'v been to the doctor and really you need money to access a doctor that realy payed attention in school cause they all tell me that it's just me. I searched the internet and found this so I thought I put my input on it. also I really don't care to fix it cause women over look alot of defects. lol I accept blinky as my nick name