Jump to content
ACN Latitudes Forums

Recommended Posts

Hi, my names skyler. i am seventeen and i have had a mild whole body tic for around two years now. it would very rearly happen more than 1-2 times a day. in the last two weeks it has progressed massivly. my shoulders are "shrugging" and twisting to my right violently and my head moves with it. this is happening several times a minuite. it dosnt seem to happen at all when im playing an instrament OR driving. i dont feel it comming but once its happend i feel a sence of relife. somthimes i can concentrate vary hard and supress it but i begin to feel strange until i tic again. Iv read that it could be tuorrets butu its unlikly show show itself at this age. people have suggested that it may be nearves touching in my neck. any information on this would be greatly recived. im getting really depressed over it now, its becoming a real issue and is very noticable, i have just began my first term at college and its not what i want people to have as a first impression.

Link to post
Share on other sites

Hi Skyler

sorry you are having to deal with this.

 

You are right that it is unusual for Tourette Syndrome to manifest in late teens, but not impossible. Still, from what you describe, it really does sound like something else may be triggering you tics.

 

We have many reports here of food or environmental allergies making tics worse so, being as you have recently entered a new situation for both at college, that is the first place I would look....is there something in your room or diet that could be making the tics more intense and frequent?

We have an interesting "unscientific" survey posted on our website rleated to tic triggers that may give you some clues....the survey result is near the bottom http://latitudes.org...ng_triggers.htm

 

also take a look at our Helpful Threads summary http://www.latitudes.org/forums/index.php?showtopic=2459

 

hope that helps get you started on trying to work out why the tic is worse.

Link to post
Share on other sites

Hi Skyler,

 

I agree with Chemar on food reactivity; I would also look at other triggers like air quality (my son tics more when mold is high). We use an air filter in my son's room and cover his mattress and pillows to block dust and allergens. Clean with nontoxic cleaners like Seventh Generation. Cleaning up your living environment may help.

 

We also go to a chiropractor and biofeedback, and my husband and I believe this is helpful. You may want to check in with other posts regarding Cognitive Behavioral Therapy. I believe this deals with the issue of feeling relief once you complete the tic.

 

Best of luck to you!

 

Eve

Link to post
Share on other sites

Hi,

 

I developed my tic at 17 years old. It's a hard blinking tic. As you state, it is rare for a tic to develop that late in life.

 

I'm not sure why it developed, but here are some possibilities, in what I think is the order of likelihood:

 

- I was using Flonase around that time (intranasal corticosteroid). Steroids are known to exacerbate tics, so it's possible I was on the threshold of developing tics and the Flonase pushed me over the edge

 

- My high school was infested with black mold. Apparently this had been going on for years. They ended up closing the school, sending in a hazmat team to clean it up, making a bunch of changes, suing people, etc. The students were not even allowed back in to clean out their lockers. I'm not sure if mold has any correlation with tics but someone on this forum has suggested it does. Basically I was breathing in black mold every day for a few years prior to my tic starting.

 

- I was getting allergy shots at the time (probably unrelated) and also taking the occasional Zyrtec (also probably unrelated)

 

- I had mono around that time (probably unrelated).

 

The doctors that I've been to also agree that a tic presenting itself in late teenage years if very uncommon.

 

I'm 31 now and still have it, but I take a small dose of Clonidine at night which reduces its severity.

 

I don't think you have Tourettes. I believe Tourettes is at least two motor (physical) tics and one verbal tic for a minimum of 6 months or something like that. If your only tic is your shoulder/head tic, you probably have either chronic or transient tic disorder. Do you have any other tics? Verbal tics?

 

It's interesting you say they go away when you drive or play an instrument. People commonly report that their tics disappear when they are doing certain things. You may also find that they disappear when you go to the doctor's office (mine do), so if you see a doctor about it you may want to bring a video (use your cell phone if it can do that) to show the doctor.

 

If I had to give you advice regarding treatment, it would be this:

 

1) identify if anything has changed for you in the last 6-12 months. Any new medications? Any new environments? Changes in diet? Any physical or mental changes? It may be something you're currently exposed to and may go away if you remove it.

 

2) have you had strep throat recently?

 

3) some people have had success reducing the severity of their tics through certain supplements. These include B vitamins and magnesium taurate. There are others but I forget. Fish oil may help. If you wish to try and take something to control it, it's probably best/safest to begin with supplements.

 

4) there are prescription drugs that work sometimes on tics, but out of dozens of drugs only a handful seem to be effective and still have a fairly safe side-effect profile. It's best to start with these more mild drugs at a very low dosage rather than some of the stronger ones. It's best if you educate yourself on this so you will be able to discuss it with your doctor and choose the drug that you feel is best to start with. The side effects range from sleepiness and dizziness to permanent movement disorders (which is the very thing you're trying to treat), to instant death from heart rhythm changes, so you probably want to start with drugs with the least bad side effects. Always start with a low dose.

 

The four with the mildest side effect profile are:

 

- Clonidine (aka. catapres) - An alpha blocker that is used to treat high blood pressure and is used off label to treat tics. Can make you sleepy, dizzy, headaches, lowered libido. I have personally found that Actavis brand has very mild side effects, while the brand Mylan gave me significant side effects. A rare side effect is rage.

 

- Tenex - another alpha blocker with supposedly less tiredness side effects than Clonidine

 

- Topamax - an anti-seizure medicine. Used by at least one mother on this forum with success

 

- Marinol - cannabis pills. Studies suggest they are effective but depending on where you live, your doctor may not prescribe them. And I think they're expensive, too.

 

To see a list of all known drugs that have been used to treat tics grouped by class and method of action and with notes about effectiveness, check this link:

 

http://www.tourettestreatment.com/list-of-treatments.php

 

Generally speaking, you probably want to stay away from any drug that has something called Tardive Dyskinesia as a side effect. Tardive Dyskinesia (abbreviated TD sometimes) is a sometimes permanent movement disorder which usually affects the face (tongue, lips, eyes) but can sometimes affect the body and limbs. None of the drugs I listed above are associated with this, however.

Edited by guy123
Link to post
Share on other sites

Said it before and have to say it again....Clonidine can have horrible horrible side effects in some people so please be careful before trying it !!!

 

Are you referring to rage? I mentioned that in my post.

 

IIRC, I was feeling a bit short tempered when I was taking it, but that was when I was taking the Mylan brand which also gave me other strong side effects.

 

My temper is back to normal on the Actavis brand.

 

Chemar, do you remember what brand your husband took?

Link to post
Share on other sites

No I don't remember what brand and he experienced a lot more than out of control !!! rages.

He was paranoid, phobic and his thought processes very erratic.

 

I just get very disturbed when I see side effects described as "rare" Guy

We were told that about all the meds my son tried and the side effects were also horrible and since being on the forums (here and elsewhere) and digging deeper, , I have realized that the canned "rare side effects" that the docs and pharma state is simply not so.

Link to post
Share on other sites

I was referring to the rage side effect as "rare," not to the side effects in general, which are common. I think the dizziness, headache, tiredness, etc. side effects are normal, especially at first. I slept like 12 hours a day when I started taking it (0.05mg; 1/2 of a 0.1mg Mylan).

 

I haven't seen short temper/rage mentioned anywhere as a side effect in any official documentation, although I have seen it mentioned online commonly enough that some people are experiencing it.

 

Did you fill your prescription at Walmart? If so, it was probably Mylan brand. The pills are white. Maybe he remembers what they look like.

 

I can't believe how much difference I had between Actavis brand and Mylan brand. I have like 87 Mylan pills left that I don't even want to take because they make me feel horrible.

 

Of course, each person is going to have different side effects at different levels, which is why I said if someone wants to use prescription medication, it's probably best to start with the ones that, generally speaking, have less serious side effects (eg. tiredness vs. TD) and start with a lower dose.

 

I can't even imagine what would've happened if I started with a full 0.1mg dose, considering 0.05mg pretty much knocked me out.

Edited by guy123
Link to post
Share on other sites

No we did not use Walmart and yes I am also referring to the rage side effect which is claimed to be "rare" but as you have noted, enough people are reporting it anecdotally to make it not so rare!

 

I am glad you found something that works for you Guy and the only reason I always comment on the side effects is that, as you again note, someone may take it at the full dose and have a very serious reaction. Unfortunately doctors do not in general make their patients aware of potential side effects so patients need to be informed before they just take a pill! (and yes, that applies to supplements too!)

Link to post
Share on other sites
  • 2 weeks later...

Hi Skyler, I am glad you have such courage to ask questions and seek advice. I have developed a few tics just recently and I am 38. It's not a fun thing to have to deal with. I have been suffering from tics such as "hard" blinking, sudden twitching and throat tics. Don't know what I would do without the internet as just being able to identify with other and knowing I am not going it alone is helpful, but I would like to share a few things that I have found interesting as well as some things that have helped me. Firstly, I contracted mono a few years ago, and my tics seem to have started soon afterword. I really didn't link the two events together until recently as I have heard mono can trigger tics as well as strep. PANDAS or PANS as it is now called (http://en.wikipedia.org/wiki/Pediatric_acute-onset_neuropsychiatric_syndrome_(PANS))is a syndrome that leads to rapid onset of tics due to strep or other immune responses. I have read that mono and many other diseases such as Lyme disease can lead to PANS later in life as well. Here is a link to a short article about tourette's or PANS symptonms appearing in a group of teenage girls and some study done around the case: http://www.scientificamerican.com/article.cfm?id=could-infection-cause-tourettes-like-symptoms-teenage-girls .

 

Strep apparently often is present in those with ongoing tonsillitis and can lead to syndromes such as PANS. From what I have read, many people have treated tics with antibiotics or more intense treatment such as IVIG(Google it). The infection basically affects the Basil Ganglia area of the brain. As disturbing as the symptoms are, it's nice knowing the symptoms are not my fault, and they are treatable. Having been interested in natural health for some time, I have applied some concepts to my struggle with these tics and have found great relief by using some techniques I will share with you. I am assuming my success is due to the fact that I am strengthening my immune system and eliminating sources of stress which seem to increase my susceptibility to tics. I try to follow an alkaline diet(Google it). It basically centers around eating a diet full of veggies and eliminating refined food, especially sugar. Certain foods like greens keep you alkaline and really help your immune system do it's job, which in this case is fighting an infection. I really notice when I have been craving chocolate or sugar and cave to my cravings for a while, my symptoms usually follow within a few days. Also, I have eliminated coffee and other sources of caffeine from my diet. This was not easy. I really like coffee. But it doesn't like me. Nothing sets me off quicker. I don't want to go on a lot about coffee, but I can say I sleep a lot better and my stress is so much lower and my tics are drastically reduced. Not sure why really as it doesn't seem to be related as far as the research I have seen goes, but it works. But I still miss it. I am not expert Skyler, and I hope you take comfort that whatever is causing your symptoms, it's not your fault and it could happen to any normal person. I personally like the idea of treating my symptoms naturally instead of filling my body with drugs, some, not all, of which are used to treat the symptoms, not the disease. If it is a virus or bacteria causing my brain to misfire, I like the idea of getting rid of the cause, and not living with someone telling me I need to work on my behavior. I now believe my tonsils combined with mono is responsible for these tics. From the research (looks legit), many other immune attacking viruses can lead to the same problems. I do believe that this has been a chance God gave me to improve my health, a wake up call, and however I overcome it, whether it be by natual methods or by getting my tonsils removed and downing an whole lotta antibiotics or other meds, I will be healthier than I was before the tics began. I hope this points you in a useful direction and know that you are supported and being prayed for as well Skyler.

John

Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
×
×
  • Create New...