(1 handed typing here. hope post will make sense as i try to condense things )

for years, i've had severe neck tic. i knew 1 day it would wreck havoc on my spine 1 day.

tried a lot of things including pressure.

either way. i think it has caught up w/ me...

besides neck pain, i now feel burning pain on my right hand that i think is nerve/spine related.

it is a burning pain. like it's on fire whenever i would jerk the neck (& only when i jerk the neck do i feel it and i am going through a major waxing of it as of late)

then there is the other constant pain where i have various tics with my hand that includes bending them the other way against my face or body or wall. and hitting/punching tics against objects...

as lara has suggested, i think is a x-over with complusive(OC) & tics combined
(hate the co-morbids,eh? )

as w/ the waxing. i have damaged my knuckles on my index and middle finger. cannot bend my index/middle nor extend them fully. Those pains are constant. 24/7 and has now gotten to the point of keeping me awake even if i take the sleeping pills.

i think i may have developed some arthritis w/ my banging/bending tics of my hand. and have been taking aspirin and back on my glucosamin/msm

hate to cry about it...not really a complainer..

the spine issue bugs me more actually...

i am going to see a doc next week about my spine as my wife and i suspect either spurs and/or pressed spine issues. or may have just ticced the spines heckit outta place...

i am not sure what my outlook is but will accept it as what is and find ways to deal w/ it although my must admit i have been defeating myself the past few days. but i'll come out of it. it is better than losing the ability to walk like when i was 14 yo. w/severe leg tics. (it lasted about a year)

(interestingly enough. besides my vocal and facial tics. most of my tics below the neck are on my right side...hmmmm...)

i guess i am asking to see if anyone has experienced something similar. i know there isn't much to do about it.

i feel it as a progressive issue. the neck tics are not going to stop. will i am not going to let it stop me.

i've been learning to type faster w/ 1 hand.

love to hear inputs.



ps may take me awhile to respond...

came back to add:

trying to describe my neck tic: it's a violent jerk to my right where my rt shoulder would hit my face and i can feel my spine pop

Moi, Sounds like you have a few dif. issues goin on all at once! Have you ever tried the TENS unit? I Love mine, as it sometimes can "change" the impulses to the brain to tik...Therefor it may give you a break. Not sure if there are any medical issues why you could NOT have one.
You also mentioned (glucosamin/msm) .....earlier you mentioned the itching & burning...Although it took several Months to build up (about 8) I was found to be allergic to it. It has Ground up oyser shells or other marine life which I was sensitive to. But it took a long time to find out that this was the cause. Then one day the "lite" went on.lol

That's why I had asked about allergies to seafood? As I also mentioned most of my tiks are mild. The TENS unit helps me a LOT. I know it will not fix anything but a good break now & then helps! Good luck my dear & keep a positive outlook. You Will find a way!

For minor pain, swelling and arthritis in the hand/fingers I really recommend you try Salonpas OTC patches.

The older version is less expensive, and has methyl salicylate in them and will take down pain very quickly. I've used them for years on my hands/feet, ankles, knees, and back.

http://www.salonpas.us/salonpas.php

They often work where other oral choices do less or nothing.

(You will not need the aspirin orally, when you use these).
These have a form of aspirin in them and work locally, and therefore affect bleeding less and have less side effects.

I use them so often, I buy in bulk at Costco!

There are several types, so make sure you get the ones with 6% methyl salicylate in them. They can be cut into strips and wrapped around fingers/toes. Once you open the envelope I find keeping them in a ziploc type baggie is best for storage.

They do smell like life savers, but that is a small price to pay for the relief they provide! (about $4.00 for a box of 40)

(((((((Moi))))))))))

my son used to really have a hard time with neck tics

had to see a chiro weekly as he would put his atlas vertebra out all the time

it has been hardly there since he has followed the careful diet plus taking the extra magnesium supplements

he used to find soaking a washcloth in epsom salts solution and then leaving that to rest on back of his neck helpful

also acupuncture

the salonpas mrsD mentioned are so good to relieve pain

but it sounds to me like the tics have put your vertebra out and causing the peripheral pain...at least that is what used to happen to my son

I think you need to go to the doctor sooner, personally.

I know how severe your ticcing can be and I had hoped you'd gone the day before yesterday.

There are quite a number of reported cases of cervical myelopathy caused by severe motor tics in the literature.

For your hand, try anything you can possibly do to help redirect that complex movement. Have you tried that soft stress ball thing I suggested? Tie it to the palm of your hand with a bandage even. Some people might find that restricting movement will make them tic more. If so, then don't continue, but other people find that it does help.

You've had these neck tics forever. You used to wear a neck brace from time to time. Have you tried that lately?


PubMed
Mov Disord. 1996 Sep;11(5):563-6.
Severe motor tics causing cervical myelopathy in Tourette's syndrome.
Krauss JK, Jankovic J.


PubMed
Childs Nerv Syst. 2002 Apr;18(3-4):191-4. Epub 2002 Mar 9.

Myelopathy caused by tics in an adolescent, associated with T2 signal intensity changes of the spinal cord.

Muroi A, Matsumura A, Asakawa H, Enomoto T, Iwasaki N, Nose T.
I have more somewhere else too from years back, but that'll just give you an idea perhaps and get you to a doctor faster.


EDITED LATER (after wakeup coffee) to ADD:

Note the term "rarely"... I didn't want to frighten you too much, Moi. (Well, maybe just a little lol)

Scholar

Try those epsom salt baths too, Moi.
I wouldn't try anything like chiropractic until you find out what's going on.
My son had some relief with osteopathy though. Didn't involve manipulations.

Hopefully the waxing stage will be over soon. In the meantime you need to try to lower your stress levels and get some healthy food and supplements into you to help destress. Easier said than done, I know.

You're in good hands dear moi with Lara, Mrs.D and always Moss.

I've been using those Salonpas patches on my back since Mrs.D
told me about them and they help me tremendously.

But, I most definitely think you should not wait to see the dr.

gentle hugs.

Hi There-
Just reading through all of your posts. My 11 yr old son has Tourette Syndrome and has been having a very rough time. He does the neck jerking as one of his tics. I started a support group here in Phoenix a few months back which has helped a great deal on the emotional side. I thought I would pass on to you that several people in the group have recently started taking Abilify for their tics and have had amazing results. We are seeing a Neurologist this Thursday and are going to look into this. My son is to the point where we are going to have to do an in-service for the whole 5th grade to let them know what is going on with him. It is better to educate them. If they are educated about it, we are hoping there will not be as much teasing. He is already a very well liked child so our fingers are crossed.

LOL aarcynic and wizzy,

I think you're right, I haven't slept well in such a long time that I was either making up for it or the meds were kicking my butt.

I slept 17 hours on Friday.

15 hours on Sat.

14 hours on Sun.

And yesterday I couldn't sleep because there was so much going on and I had to pull over to shut my eyes for 5 minutes here and there...

but I think I am getting used to it.

I think my body DID needed all that sleep because I do feel "revived" for the first time in months...

thanks for thinking of me, guys...

~~~~~~~~~~~~~~~

hi Karen44,

I've been on meds for a long time then got off of it because I felt like I had lost myself all those years due to the meds.

Starting the Cymbalta was a very hard decision for me but now that I've started, I am going to give it a shot (at least a month). If it doesn't work out. I'll give Abilify a shot.

I AM very happy to hear that many are finding Abilify helpful. That's great to hear.

As for your son, sounds like a wonderful lad. I am with you. Education is the key. More than anything...I did some inservice for some of the kids with TS when I was younger.

I am sure he's a wonderful child and I hope him nothing but happiness and success in life.

thanks so much for sharing about him and your input and nice to meet you.

~~~~~~~~~~~~

I am doing OK. Still wearing all my paraphernalias and patches and such.

think I got a little ambitious about something and made my hand hurt more so going to give it up until I see the neuro and the spine doc.

April 7th- neuro

April 9th- spine doc.

cymbalta seem to be adjusting itself to me. LOLOLOL

thanks everyone once again....

I know all your advices have helped a lot of others based on the feedbacks.

for the broom

I've personally not heard of Cymbalta used to treat tics but then again I'm not up with it all like I used to be, but I figure if other things are being helped by the use of this medication then that will help calm your tics. I just read some articles about it being used for chronic pain which was interesting.

Whatever you do, don't go cold turkey on the Cymbalta if you decide you want to stop it in the future.

P.S. I hope the Neuro you're seeing is one you know already or at least if a new one is someone who has very good knowledge of Tourette's Syndrome. If you're concerned that they don't, then I know someone who I am sure would be able to suggest alternatives.

don't feel the need to read this, it's going to be long..LOL

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

first of all, thank you all so much for your concerns and supports...I apologize for not being around lately, getting ready to explain why...

I met the new neuro (no, I have never met him before but he's supposed to have an excellent reputation. He's only been around town for 6 months) and as soon as I saw him, I knew he had TS although he never admitted to it. But it is just too apparent although I can see him trying to suppress it while I was there. (this would be sign number 1 for me)

the first thing he told me was how excited my doctor has sent me to him. But not in a sense of, "oh yeah, nice to meet you" but more like "wait til you see what I got that can CURE you..."

without asking me any questions or letting me talk, really, he just launched into what is TS, and the history of it, and what meds are used...

I just sat there and listened. I did think to myself, "OK, well, I have TS...I know what it is, but I guess he might think that this is my first time and that I am just finding out what it is..."

so, I let him talked...and talked...and talked...

finally, I told him that I was familiar with TS and as I was about to explain to him about my history...he cut me off...

I think I might have offended him??

He then asked me what meds I took...I mentioned a few and he just nodded his head and said well, those are exactly the ones to treat TS.

with Haldol and Orap being the forefront but he has a secret weapon.

"Abilify"

I told him that because of my past experiences with meds, I was wondering about the alternatives...I suggested bo-tox...he scoffed at me and said: "For that??"

I looked at him and said, "but I've had it done before, not for this problem but for another"

he won't hear of it...cut me off again...I was going to suggest 10s unit but he just didn't really gave me another chance to talk...

he then started about how wonderful abilify is and I asked him is it in the orap family. He says yes but it is well tolerated and very low side effects.

I told him about my panic attack with Orap (this is where I made a mistake)

he scoffed at that...he said Panic attacks are NOT associated with Orap..

I was just a bit shocked thinking to myself...are you calling me a liar??

but I kept it cool...and listened...

~~~~~~~~~~

side bar:

as moss would tell me later, while panic attacks are NOT associated with Orap. What I felt were Extrapyramidal symptoms and they were AWFUL...worse than actual panic attacks...

for example, the worst one that I suffered was when I felt like a million ants were crawling inside my chest...and I scratched and I itched and I was almost to the point to get a kitchen knife to cut my chest open.

Luckily, I was visiting my parents at the time and my mother caught me and took me immediately to the hospital. 30 some hours later, they finally got me out of the dilemma but it was so bad they couldn't even sedate me. Just kept on giving me cojentin(spelling).

with Orap, the Extrapyramidal (ep) were often and hard to take, but after that experience I took myself off of Orap immediately....

went on Zyprexxa...not much better...

anyways, this is my point back to the doctor...I made the mistake of using panic attack vs. ep (but I didn't know it was ep).

But I DID described the symptoms to him. I would think that as a neuro(he also holds a dual degree in psychiatry) that he would understand what I was talking about and not hold the semantics and the jargons over my head?

~~~~~~~~~~~~~~~~~~~~~

anyways, I agreed to take abilify and got talked into taking lexapro as well...

I did tell him that I was taking cymbalta and while the only side effects were some nausea in the beginning and then constant sleepiness, I actually was liking cymbalta (this was prescribed by my regular doctor) for what it was doing for my hand. (I didn't like what it was doing to other parts of me, but more on that later)

I find that cymbalta, while it didn't take away my tics, really eased my pain levels.....and that was a plus....I have a high threshold / tolerance for pain so when it got to the point of that type of pain that it was bugging me, I knew I was in trouble....so cymbalta does help in that respect...

he scoffed at the cymbalta also...LOL

to sum it up, that visit just was a one sided visit...but you know, I figured he was "excited" and I think he has TS (thus more compassion??) and that I'd give the abilify and lexapro a shot...

~~~~~~~~~~~~~~~

well, I got the "Extrapyramidal" attacks with Abilify...not the bad ones, yet...but bad enough that I couldn't function...

I called him finally...and got his assistant and told her the situation...she called me back and said he said, " tell him that he's got 'Anticipatory panic attacks' and that if he doesn't take the abilify, he'll have go back to Orap"

and that was IT..

I have to tell you, I was ******....that's all I got from him...not a take a benedryl, or come see me...but because I told him about my past experience he is telling her to tell me that I "ANTICIPATED" this attack...I guess this is where his dual psychiatry degree came into play...so he can "psych" judge me now...

now, I am not highly suggestable...I have tried to get hypnotized before and I pretended to be hypnotized to make the doctor feel better..but it didn't work...

so, I took myself off the meds immediately. But still suffering from the attacks..I am also finding I am now getting photosensitive...

this is where you would probably laugh...moss came home to find me typing with sunglasses on, salonpas patches all over my hand and neck and wrist straps and neck straps
along with head strap (not sure why, but a head strap made my panic attack better)

and I've been like this the past few days. Even though I've now taken myself off the meds, the attacks are still around but less frequent now..

it is only today that I feel good enough to come on and type. The glare of the puter screen simply puts me in a state of panic...

~~~~~~~~~~~~


now, I don't want to take Abilify away from anyone that finds it working for them...

I am very sensitive to all meds....and I fall into that small group of people that just get the worse symptoms..

I didn't want to get into mentioning the stuffy nose and diarrhea that came with the abilify (oops, just said it out loud, didn't I?) but I was truly miserable not just with the panic attacks...oh wait, EP attacks...

~~~~~~~~~~~~

bottom line, I am not going back to this neuro. I don't care how excellent his rep is and I don't care if he has dual degrees and is smarter than a 3 headed chicken

and I don't care if he has TS....I just didn't get a good vibe and I was offended (and it takes a LOT to offend me!!) that he has the nerve to suggested that I "Anticipated" myself into the attacks...

~~~~~~~~~~~~~~

I do however, love the spine doctor...

basically, my C-6 and C-7 are screwed up. Wear and tear and bulging disc. My prognosis isn't too good.

He says the only option for this kind of deterioration is usually surgery, but with my tics, how would I heal?

I asked him how bad it can get to if I don't get it fixed...well, continued weakness and lost of balance would be it...

he also suspects that I have other spine issues and will do an MRI in a couple of weeks. (He wants to do it sooner but we are leaving to pick up the grandmoisses)

so, won't know until after the MRI

~~~~~~~~~~~~~~~~

like a normal human being...I was a bit dehanded after the news...or defeeted...wait, defeated...

but you know how you have truly come into being with yourself?? I am not the same person that I was a few years ago...where I let myself thinking things into oblivion...

I am just going to deal with it as they come...going to wait until after the MRI and see what all my options are...and then deal with it...

if I lose balance, so be it, if I get weak, so be it...I am very lucky...have a great wife and great support group like you all...

I thank you all so much from the bottom of my heart...

~~~~~~~~~~~~~~~~~

there is something from this meeting with the neuro that has solidfied my beliefs...

1) COMMUNICATION IS THE KEY.

I don't care how many degrees he holds or how excellent his rep is or that he has something similar to mine...if he didn't LISTEN, it meant NOTHING

2) My own communication needs to be clearer...if I had said EP instead of panic attacks, I wondered if it would've at least made a little bit of difference

3) I like who I am now that I am not letting this defeating me...I am not the same moi that I was few years ago that I am now...gosh, it feels good to be MOI...you know what I mean??

4) I am glad the meds can work for others...but I am NOT going back on any of those meds again...I have found my creativity at zero when I was on these meds and while they helped with my pains they took "ME" away and I hate that...I'd rather live with my pains and be who I am...

I felt very disassociated on these drugs...

~~~~~~~~~~~~~~~~~

once again, thank you all for your wonderful inputs and supports....

(((((BIG HUGS)))))