anyone as bad as this?& light sensitivities?

[Eric]

Greetings-- my name is Eric Gaudet--I am from Yakima-Wa

 

I was wondering if anyone out there with TS---has extreme sensitivities to light/ more importantly artificial lighting---

 

these for me--- not only triggers--but--mulitply ALL! my symptoms---

trust me--this addition is not user friendly--considering I have very intense, explosive and violent motor tics---complex and involve multiple muscle groups all at once--

 

anyway--I am a work of art---and have yet to communicate with anyone as bad as I--

 

in a typical moment or bout...best expressed in an isolated moment for sake of example-

 

for example while I was trying to sit at a TS conference--

 

after rocking and pacing before the chair(repeating words,and trying to calm myself down long enough to sit in a chair--for about 2minutes)--

 

I finally force myself to sit--for we are about to start--

 

30seconds in (this is standard process for me)--the surge starts, my eyes roll back into my head-later my neck is pulled back then wiped violently back and forth 10 times, arms thrown -up-and for about 5 seconds I am pinned and twisted around facing backwards now--then--I am trown almost by unnatural means---up and out of my chair--with a lightning jump---a minor second later(for I am hardly done-smile) I follow through with 3 puches to the wall next to me---followed by 7-10 puches to my chest---followed by double-fisted puches to my face and head----Then---a shoulder tic--that throws me into the wall 4 times--I bounce back and recover--only to scream the F word--and start hitting my head against my knee---

 

this all happened in about 30 seconds--I follow through with the old-"I meant to do that look"---

 

stick my hand in my pockets grab a pen to dart done some notes I heard WHILE I was having a bout---only to break the pen--throw my note pad---and go right back into a same but different arrangement of movements again----APPLY and REPEAT Indeed---as YOU CAN SEE--all of this is very painful--mainly because this happens all day--in different degrees

 

anyway--teach me to attend a 8 hour conference--indeed--the irony is there--

 

this is only a small percent of what I do--and how it interplays--

 

I have all the minor tics too--sniffing, coughing, make sounds/hum/--have excessive blinking---facial tics that will dart my eyes open-even from deep sleep---sometime when I drive my eyes force themselves shut(nice huh)--I repeat my words,phases, stutter---bite my cheek--tense my jaw--clench my teeth-- yell at people(sometime I can tell if for sport or out of disorder)

 

anyway--I am sure I left something out---anyway---I am 27--and just found out 6 months ago what this was all about--I am sure many of you have similar exoeriences--with wonder what the ###### is wrong with you---no doctor takes you serious--blah blah blah

 

then--you find out hey--it is TS,OCD,ADHD,SID!!!

 

anyway--The last thing this is --is a competition

 

however--I have yet to meet anyone as bad as I(I have meet people with worse vocal tics-however)

 

AND--I seem to be a late bloomer---most TS -are children--

 

I currently taking MARINOL---10mg--very expensive(300.00$$-plus for a 30day)---It is making a small dent---but---usually the only thing that will put me down is a baseball bat-

 

I almost never sleep---and again--my example is from a low lit enviroment---put under artifical lights---and I turn into the Hulk--

 

Mind you--I am a benevolent being with a tendency towards eastern thought--

 

it would be easier to deal with myself--if I was a thug or criminal--anyway--perhaps-- I need to change professions---of late--I encourage my friends to make movie fighting sounds--kung foo sounds---or I just try to turn my movements into a real poor attempt to breakdance--or--I follow through with the "ROBOT-dance"

 

anyway--I even bring a pillow to class so punch--and encourage other students to bring pictures of ex-girl/boy-friends or enemies--and I will cast my magical fury upon them--after I tape their photo to the pillow--that is-

 

 

anyway--it is my hope to offer my experiences to others struggling with TS--

 

and--if anything may I prove to be an example to others---that at least one's own TS is not as bad as this(smile)

 

hey- even I was thankful I dont say F-god--every 5 seconds--like that 9yr girls--I ask her if she would trade with me for a day??--she said--no way!!

 

Again--I am by no measure competing--I would just like to relate to someone else at this level of severity--

 

I view anyone with even a slight sniff, or cough with the same compassion as for someone that is as bad as I--

 

my concern and encouragement is unconditional---I would not wish this on anyone--

 

Eric Gaudet---

 

and--again--if anyone has light issues--I have something that will help!(SMILE)

[Chemar]

Hi Eric and a big welcome to you

 

Yes, there are a number of folks here who have noticed light sensitivity...my son reacts to fluorescent or flashing lights, and some here have problems with non-LCD computer or TV screens.

 

Gosh! You do seem to be having a severe time with your tics.

My son is 14 and used to have very severe TS/OCD

He tried meds for a year but hated the side effects and so for the last 3 years he has been med-free and using a combination of natural treatments which have worked wonderfully and his TS and OCD are now very mild.

He also had problems with ADD and SID and again these are so much better since he has been taking extra vitamins and minerals and oither supplements that help, as well as trying to avoid junk food and artificial colors, sweeteners etc and other tic triggers.

 

There is a great article here that explains which things have been found to make tics intensify, maybe you will find some stuff on the list that you identify with

 

http://latitudes.org/articles/finding_triggers.htm

 

I do feel for you Eric, as i know how my son used to suffer when things were severe....but hope you will maybe consider trying some of the things that have helped so many of us....who knows...maybe it will help your tics stabilise too!

 

Please stay in touch with us, and let us know if there is any detailed info that you need.

 

Again, welcome to Latitudes

[Eric]

http://www.irlen.com/

 

http://www.irlen.com/index_autism.html

 

http://www.irlen.com/index_sss.html

 

there are many more-- if your in the northwest--"search for Irlen center northwest--

 

if you are not aware---this could be life changing for anyone with TS--

 

I would rant on and on about it--however---there is lots of info about this---and most people in the medical profession--do not take this serious---so most have to explore it on there own-

 

my own doctor viewed this as part of my OCD of "having some fear of light"....

 

anyway--I wear special tinted glasses--I basically wear my sunglasses at night-indeed--I will not leave a room with out them!

 

it is the difference between complete fight or flight--or--coping...

 

I struggled with this first--then found out the TS later--they seemed to have a call and response to my TS--

 

any--there is only one person that tesst for this in the Northwest--I have all her contact info---

 

plus--of all things--and--how I even found out about this---is--a women from my own town wrote the first entire book on it!!

 

anyway--even BORDERS BOOKS carries it--I have that info as well--

 

anyway--I got tested in Bellevue, WA----and found out that--that out of 2000 people tested over 10 years--I was in her top 20 people--

I can hardly read this right now-

 

anyway--this crosses the borders of many disorders--

 

however--there are many pro -s and con-s to getting the glasses--plus as they are related to TS people--as opposed to people without--

 

thank you(everyone) for the kindness and info--

Eric

[Claire]

Eric,

 

First of all, most of us on the board (but not all) are parents investigating non-pharmaceutical approaches to reducing tics and other neurological issues. Several families here have kids with OCD, ADD/ADHD, sensory integration issues as well as tics or Tourettes.

 

IRLEN

I am quite familiar with Irlen Syndrome, and once called and spoke with Helen Irlen directly. My son was tested and found to only have mild sensitivity.

 

LIGHT SENSITIVITY

I should note that light sensitivity can be caused by a riboflavin deficiency as well as elevated mercury levels. If you have insurance, I highly recommend getting tested for mercury (or other metal toxicity). My son used to use the blue Irlen sheets, but since he has been treated for the mercury, he no longer needs the blue sheets.

 

Another way to deal with light sensitivity came from Chemar: She had replaced her light bulbs with the full spectrum light bulbs, and it seemed to help her son. I read a study (in a book, no link) that showed that replacing harsh flourscent lights (which flicker) with full spectrum (daylight) bulbes, reduced ADHD in the classroom by 30%.

 

FLICKER

If you are so sensititive to light, there is a good chance you are sensitive to light flicker. TV and computer screens have a ton of light flicker and can be a major trigger for someone who is photosensitive. LCD screens have no light flicker (they make $450 LCD monitors that also have a TV tuner), but should be watched in a well lit room, and if it is TV, from across the room. Unfortunately, computer work can't be done from across the room.

 

SLEEP

Finally, the sleep deprivation has got to be a major factor here. I would encourage you to investigate natural sleep aids, from epsom salt baths to magnesium taurate to melatonin. My son takes melatonin, and I am hesitant to recommend it for children, because even though it is over the counter, it is a hormone (not a female hormone!). But you are an adult and can do your own research.

 

PROCESSES THAT CAN HELP (FOR REAL)

I strongly recommend that you read through the threads. So many of us have found help from some combination of:

 

Eliminating artificial flavors/colors/preservatives

Food allergy testing and elimination of food triggers that are identified

Yeast testing and control if there is an issue

Metal testing and detox if there is an issue.

Supplements to either correct deficiencies, or that commonly help those with such issues.

Elimination or minimization of CRT screens, and switching to LCD screens.

 

RESULTS

This board is a very 'scientific group' and have done a ton of research and have seen REAL improvement. My own son no longer needs the blue Irlen sheets after 4 months on the mercury detox program.

 

DOCTORS TO GUIDE YOU--THERE IS HOPE

If you don't have time for research, there is a starter list of doctors throughout the various regions in the U.S. at the top of this forum. There are MDs and Naturopaths who specialize in such testing and guide patients through natural treatment methods.

 

Good luck and God bless,

Claire

[Volant_Vixen]

Hey there Eric. Sounds like life really sucks for you and others with tics/light sensitivity. Thanks for talking about it so now I know a few things to try and I'll hit ya back to tell ya if they work. I don't have such a violent reaction to light or tics in general, but I am sensitive to artificial lighting, fluorescents in particular. I get extremely hot in the face and feel really tired. My back starts to hurt, I can get migraines and my stomach gets queezy. I have bipolar and I don't know if it has anything to do with that or if it's normal emotions based on my physical discomfort, but I get really crabby and aggressive. Cognitive abilities are out the door. Shoulders hurt. I may not have any kind of tics, but these are not very fun symptoms either. Four years of highschool I suffered under these terrible lights and nobody understands or believes me. I'm also sensitive to the sun in general. It makes me unusually tired compared to most people. I heard a story about a baby who gets burned in normal lighting and has to be kept indoors with special uv blockers on her windows. She's a real-life vampire! This fascinates me so much I might go to school and research it. Keep those suggestions coming!!! I'll let you all know what I tried and what works for me.

 

Laura