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any severe neck ticcers out there?
(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. :grouphug: 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 :hug: |
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. Quote:
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. Quote:
:hug: 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) :hug: Quote:
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. :hug: |
and Chemar ;)
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OMG..smacks head! but of course! :hug:Chemar...:hug: thanks Lara.:hug:
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hey hazel(garden girl), i'm not familiar w/ a tens unit. will ask doc about it. tanx!
re: gluco/msm. i've used for a few years now. no problem. not allergic to shell fish. itching is neuropathy based. i think- as well as moss. because it only comes after the burning sensation(after the neck tics) and it isn't something that is an reaction. have kept close observation. :) sorry to hear about your tics but glad the tens unit helps! ------------------- mrsd! i love salonpas. gosh, i need to tell you about it. my grandma's(maternal) 2 major remedies when i was a child was salonpas and tiger balm. two of her brothers and cousin went to japan to become doctors (during the japanese occupation of china and one of them ended up working at the pharm the developed salonpas. so it was common in my household when i was growing up. and i love the smell of them. reminds me of my childhood and grandma. :) just recently found it in the states in wal-mart a couple of years back and have been actually using it on my neck and else where (you should see my salonpas days where moss would laugh cause i have it almost everywhere i ache and would ask her to place them on my back. i literally would use about 15 patches at one time on some days. but never on my knuckles...didn't think of that. then i read your response and tried it. the patch would fall off. so i cut off a glove and now have it over the salonpas. it is helping some! :D thanx for recommending it for my knuckles! :) will look out for the ones with 6% methyl salicylate in them. i like drugstore.com so maybe they'll have something there. --------------- hey cheri, i have a wonderful chiro but it's been awhile since i'd seen him. he's into functional medicine also. i think after my visit w/ the doctor. whom i suspect will then direct me to see a spine specialist, then get x-rayed, then...blah blah blah...then, i think i'll pay a visit to my chiro just to adjust my back. i have been developing a lower back tic as of late :mad: lol if i put my verte bra on, do you think the doc would think i am sexy? lol j/k glad it all worked out for your son. always so happy to hear about success stories. wanted to make a note for new parents and tsers so i don't scare them for while the ts itself isn't hurtful. the repetition of the tics can really be annoying and hurtful. but that's only in extreme cases. ------------ lara, funny thing you said about scaring me a little... i am usually not scared and i think i was actually a bit scared when i posted this...guess there is a part of me that is in fear that i would lose the use of my hand... and it's funny just recently, i have been going through a renaissance of sorts. been writing, drawing, and secretly practicing piano again recently and finding myself a bit more...and then, this started to happen. guess i had another "george" moment where i felt like, oh, what now? just when i got my butt in gear to do something, something else is happening again. but know that it's a wonderful life and that i have nothing to complain about... wonderful wife, donna reed, i mean, moss (gosh, she really is a lot like donna reed! lol) have great wonderful friends. you all....my gosh, you all have given me so much...and these responses have warm my heart so... i really am lucky and these are good reminders of that... moi taking off the blinders... :) (it's a good thing that i learned to reaquaint and draw w/ my left hand few years ago. and actually, i'm naturally left handed and i discovered that i can write backwards easily. neato, eh? lololol) the stress ball didn't help because i would end up punching myself with a whole fist vs soft landings.lol. let me see if i can described the tics of the right hand. at times, it is a simple rubbing the face with the fingers. those are my favorites. lol then, there are the jabbing ones where either index finger or middle finger pokes me right on my mandible. then either my mandibles hurt or my fingers get jammed. and sometime they are directed at anything that is to the right of me. so sometimes moss gets jabbed. lol but the worst times is when i'd jab a wall or a cabinet or something hard...that's when it really hurts. I really feel for the walls and the objects that were hurt by my jabbing and i had to apologize..ya know? lol the worse ones are the punches. i punch right ON the knucles. index and middle knucles to be exact...usually in the air but when it's on the face and an object, that's when I start feeling guilty for abusing the objects. ;) w/ that said, i have been thinking that the origination of these doesn't start from my hand but my neck. have a feeling that it is related to my neck jerks. am wondering if i have that under control that it would help alleviate the hand symptoms. the neck collar, funny you should mention that. i was looking on line w/ moss the other day to see if we can find a more solid one to help. the ones i used to wear would work for a few days, but then my sweat and the amount of force of tic would wear it out so quickly that they just didn't work anymore. those foam ones were too expensive to replace every few days...so kinda have gave up on those and just relying on yoga and tai-chi. which does seem to help. but am going to invest in a more expensive neck brace with rigid plastic along with chin support...what do ya think? hey, do you remember when you and birdude asked me to get bo-tox done? I was hoarse for years and barely understandable? LOL and also developed that stiff neck to the right? and don't want to talk about what they found when they went to inject it. but glad they did and now am 100% johnny carson free. ;) anyways, monkey suggested bo-tox and I actually have been thinking about it. and hopefully they don't find any -oma this time. :thud: lol -------------------------- Quote:
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------------------------ thank you all for all your advices and inputs. i hope others out there that has similar to what i have will see the awesome advices and inputs that you dear folks gave. my own question/concern now is how much my spine has been damaged. i think that's the part that scares me. maybe why i haven't been to the doctor. but i will make an appt tomorrow. i promise. :p it's funny how i really haven't been thinking about TS these past years. think i have "moved on" from it. and now, i am actually reading up on it again...weird, eh? my biggest concern is that i might not be able to perform the finger/hand puppet shows anymore for the kids. lololol might have to do a leftliloquy... thanks a bunch, folks. this reply took me almost 30 minutes. urrrg...frustrating when i can't type fast. i type almost as fast as i think and typing like this makes me lose my thoughts as soon as i finish a sentence, i forget what the next is. lol. guess add contributes to that also... ((((((big hugs)))))) and thanks, everyone...i'm going to be fine or deal w/ it one way or another...won't let it defeat me. heckit, i might become the $6.00 man (6 million dollar man might be pushing it, $6.00. definitely. lol) :grouphug: :grouphug: :grouphug: |
(Just sneaking in to thank you all...your wonderful caring and advice is helping...sneaking back out)
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Hey Muwah!! I'm glad I saw this thread, as I've got so much hip/spine pain and all of the help and suggestions given to you just may help me. My DH has a tens unit, so I'm going to try it and also bought some of the Salonspa patches.
Hope you can find more relief soon. take care and thanks everyone. |
Moi...the patches also come in smaller sizes now so there is less cutting. :hug: really had to chuckle at the thought of you being plastered with them. LOL
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(((Mr. Moi))) I was going to suggest a good chiro too. You know I hated going to chiros, and I most often left feeling worse and very sore to say the least.
Then my massage therapist suggested someone whom she said had healing hands. He isn't the kind that snaps and twists you. I thought well I'll give it a try. He's amazing. My tailbone pain even let up which I wasn't even hoping for. He also uses low level laser therapy which really helped a lot. Anyway, there are some really good ones out there that don't snap, crackle and pop. :D I think acupuncture sounds excellent as well. Since I get massages, though, there is no way I could also afford acupuncture. Darn it. I love you Mr. Moi. :hug: |
Keep in mind that I'm saying this as a friend; You really need to come up with a plan where you can make all this a priority and have it fixed. I realize cost/insurance may be an issue but we need to get this figured out and fixed. Keep me up to speed on it please.
I am the MonSter that MS fears. |
[I logged in here this morning my time and I started to write my message and my internet went offline and I haven't been able to get back till now (evening). I was still logged in. LOL :eek: I would have thought it might have logged me off after a certain time, like 10 minutes.]
Moi, several other things that I would think about right now during this waxing time you're having... Have you been experiencing more than your usual symptoms of any other conditions that you may have? If so, then that might be something worth looking into as well. Sometimes treating the co-morbid or whatever else you may have had escallate recently can really help with calming down the tics. Also wondering if your renaissance isn't related to anything in particular, like unusual mood swings, that could be affecting? Sorry to ask such personal questions here. :o Some people find that CBT (just an example, there are others) can help with certain symptoms and that in turn might create a less stressful day to day life and then the tics might calm down. Also, have you had any changes in medication recently? I have no idea if you take medications for anything, but some medications can affect the severity of tics. Some medication dosage changes can upset the apple cart too. Do think about other things that might be affecting your level of tics right now because, esp. in people who have TS and comorbid conditions, sometimes working on balancing out other things, be it OC stuff or a number of other things can actually lead to some relief in intensity of the tics. About the neck brace. Heck, something as you describe might just be a little rigid don't you think? I mean, the soft one can cushion but something really hard like that, esp. attached to your chin as well :eek: might cause more problems than it's worth. Massage, as Doody mentioned is terrific. Actually giving a massage can help you relax as well. I figure if you're in pain, get pain relief. I'm still not sure of seeing a chiropractor for any type of adjustment at this particular moment until you have xrays etc.. At this stage. I know chiros do other stuff and same with osteopaths. I have two concerns. One being that any type of manipulation or adjustment might only work for a minute or less if your tics are that severe right now. :hug: Moi, you have more than one thing going on... There's the tics and whatever else, and there's the pain and potential for serious injury again and damage. Treat the pain, manage the symptoms, but also remember that if this is a regular waxing period of tics, then it will get better. But in the meantime you have to find out why you have the pain and itching. If this isn't like one of your regular waxing periods then I would be trying to figure out what needs attention to make it all change all of a sudden. Easier said than done, I know. :hug: You need to see the doctor to figure out if the tics have caused damage to your spine. No amount of pain relief is going to get rid of the tics, but in the mean time you need to do something or take something for the pain because the more pain you have the more you will tic! Just adding in here for the 5th edit... I have spinal issues, too numerous to ever mention, but I also have a carpel tunnel nerve entrapment (elbow) that causes me to have numb fingers and burning and itching. There are some really good illustrations in the TOS Forum btw which Jo posted. Here's just one of them for example: http://neurotalk.psychcentral.com/post284498-35.html I can't find the other ones I was specifically looking for I'm sorry. Will try again tomorrow. AND :D Just before anyone wonders what on earth we were doing "asking" Moi to get botox... :o We didn't actually 'ask' Moi to get botox as in... Like "hey moi, how about some botox???" :) It was a serious endeavour for serious reasons and well and truly researched with a particular TS Specialist and then Moi did more investigations etc.... Botox has been used in specific and rare occasions to treat severe vocal tics. We're not talking about using something here for cosmetic reasons because we all know that Moi is pretty enough already (and younger too). :) Moi was experiencing some very severe and long-lasting tics that were both painful and harmful to himself. At the time certain doctors had found that a few of their patients received some relief from severe vocal tics (even if somewhat temporary) with use of botox. |
Keep the botox away from those dimples!! *grin
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just an FYI re Chiropracter
NUCCA trained chiros are best as they dont whack ya around:eek: but do very gentle pressure treatments etc. They specialize in cervical area (www.nucca.org) My son has learned that sometimes being "out" in the vertebra can actually trigger more tics. Once the doc carefully aligns the spine, both the pain and the tics seem to reduce. and a good chiro will always take x-rays and not manipulate/adjust anything that requires orthopedic etc. The NUCCA trained ones just seem tohave that extra measure of care, we have found Moi, have you ever tried soaking in epsom salts baths? (2 cups epsom salts in warm tub water) It really does seem to take the edge off waxing tics etc for many hope you are seeing your doc and getting xrays/tests etc praying for waning:hug: |
Thanks Chemar. That's good to hear. Some of the ones here aren't as careful or thorough as they should be. I think I read in another thread elsewhere on the forum that the one moi used to see is very good. That's a relief.
Thanks for the link! (p.s. I said carpel tunnel. I meant cubital tunnel. Sleepy head typo here too) |
Hope you are feeling better there Moo-ee.
I really like my Dr. Chiro. He is taking my burny shoulder away and is suggesting that I stop walking into door jams.:o I say, the door jams are up and smacking the carp out of me and winning. Here is praying that someone finds you relief. (Smacking your left side. Sorry can't stop!:o) |
I spoke to moi this morning and he's laying around on the floor (*grin) to calm his ticcing...has a dr. apt. tomorrow...Wed.
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(((Moi)))
I'm so sorry you are experiencing so much pain and I'm really glad you will see your doctor today. I'll be anxious to check back here, after work, to see if you've found out anything from your doctor appointment. take good care xox |
Moi, same as above...I will be checking to see how you are! Please let us know as you & Moss are soooo loved here!
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((((everyone))))
wow everyone. thanks so much for the responses and replies and all the well wishes. it really touches us. :) :grouphug:
well, the appt was prolific, i think i am using the right word here. lol he has set me up to see a spine specialist AND a neuro. he's not the type to just send people off to see others so i think this is more serious than i thought for i can also see the concern on his face. he is a really wonderful doctor that cares and listens. i suggested everything to him and was very detailed in my description. i also didn't "hide" my tics which i usually do (not sure why i hide my tics. lol) this is what he suspects. i have c-5 and c-6 problems based on my descriptions. he hopes it's only bulging discs and that can be helped with a shot or two. but if it goes deeper, we'll talk about it. i told him about the salonpas patches. he's not familiar with it but says it shouldn't hurt. i asked him about the bo-tox which to my luck. a new neuro in town who is across the street from him just happens to be the specialist and is the only one in town that does bo-tox. i'll see him on the 7th of april. and i told him that if the guy doesn't do bo-tox, that i'll just be as happy with bo's brother, mo and get mo-tox...then we got into a three stooges routine and lol..... i told him i'd been lying on the hard floor to keep help calm my tics whenever i am not doing something and it is helping. but i don't want to keep on lying on the floor for i feel like it is hindering me to get things done. the problem is that my work is puter related but sitting at the puter for longer than about 15 minutes has been really making the neck tics worse. i did tell him that i am thinking about buying a 2X10 and tie it to my back to prop my neck up. he thinks we should go into business together. lol he's sending me to a "hanger" to get custom fitted neck brace for me to wear...woohoo!! In the mean time, i am going to invest in one. if anyone has any good suggestions, please let us know. he also gave me 30 days worth of cymbalta. says it'll help with oc tendencies,anxieties, maybe the tics, even with arthritis. i guess i'll have to suck it up and take the meds for now. have to look up on cymbalta. i took my first dose and have been feeling a bit nauseated and tired... but i am hoping it'll help make me sleep. so, i will see a neuro about bo-tox as well as nerve damage. will see spine specialist to see how the little verte bras are doing and if i should get DD cups. LOL and am getting custom made neck braces. and might even get a custom hand brace made if need be. i guess i'll start becoming a mummy even though i'll become a daddy... which btw, today, it is official...the final hearing went, we are going to be parents.... it's been an emotional past few days....the news of one of our dear friends that is fighting a losing battle. the news of the kids... that bitter sweetness.... i had to get out of the house yesterday and walked around the neighborhood... pollens abound and made me sneeze...i walked around and noticed buds on the trees sprouting...the sun was nice and warm. the marsh are golden and dancing in the spring breeze... egrets were in the marsh fishing, pelicans were flying across the river... my heart wanted to soar as i walked on the dock and as i ponder life... i hate that the ones i love is going to leave us...but i rejoice at the life that i have... the news today is reviving me in an unknown sense... these pains, no matter where they take me...i'll deal with it.... because i do know that i have tons of support...your wonderful posts and emails and messages have warmed me/us deeply.... i feel kinda bad posting about my pain. it really isn't much compared to what a lot of you are going through...please know that you're are in our hearts and that we so appreciate you all for asking, caring, and for your awesome supports... i have salonpas patches on my joints. i am going to epsom salt. i am going to learn to type with 8 fingers. :) it won't stop me... and oh yeah, i'll be talking to my chiro after all these appt are done and see what happens...everything is going to be balanced and utilized... (((((big hugs))))) to you all...thanks so much ps, haven't been on so please forgive me for the lapse in response. will get to everything as soon as i can...thanks! |
Botox! Neck brace! Becoming a Daddy! Wow, Moi! That's just great!
Thanks for giving us an update -- been missing you. :hug: |
yay!!! so glad to hear all has worked for the grandmoises to be yours :grouphug:
relieved you saw your Doc and praying all will be put back together the right way to bring you relief:hug: |
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Great news Moi. |
Is that it?
Kidding...kidding, just kidding! Hey, you can't smack me either for a couple of days. (sticking out tongue) A kid beat you to giving me a mild concussion. You always tell your health care provider everything. (been there, tried not to tell all...busted) Sound like you have a great Dr. If tx doesn't work. Try lying on the wood floor and suspend a lap top from the ceiling. I have some duct tape. Works on lots of stuff. Anyways, we need to get you feeling ready to play Barbies and Legos. I should be nice to you so.... here.... :hug: |
Taffy...give Moi back his Barbie. :rolleyes:
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Play nice
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Moi, Moss, I am sooooo Happy at your good new! But I'm a little lost:confused:...How old are Grandmois? I missed all that. If the are very young then they will get your back straighted out all right!:eek: I have a little 2 year old Nephew that just came to live with us from Egypt. Even though I have all my health issues & braced from head to toe...I STILL swing him around and play with him. Just can't help myself:D So many laughs & smiles to look forward to! I really am relieved that you saw your Doc. & the fact that you are honest with him is a huge Plus! I pray for much imrovements:hug: It is really funny for me to use the term "relieved" but I really am! All you guys here have become so special to me so fast!:grouphug: Did ya ask about the TENS unit? Some days getting zapped feels soooo good!:p Wish I could put zappers on brain, but they say NOT to:rolleyes: |
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"Botox, Neck Brace, Daddy, Haircut, and Shave" I'll be Big Daddy-O. Who's going to be Botox?? LOL ~~~~~~~~~~~ laffy, now, that's a thought, suspend a laptop from the ceiling...you might have struck a new million dollar idea and spawn the devolution of the human race to absolute state of indolence...I LIKE IT!! now a smack for our sponsors.... btw, I want my barbie back...and G.I.Joe with the Kung Fu grip... :eek: ~~~~~~~~~~~~~ hazel, I am going to ask about the TENS unit at the neuro's office. I got my appt with the Spine Doc today. 2 days after the neuro. ~~~~~~~~~~~~~ I got my temp neck brace and it's helping. Got hand brace and elbow brace also. Salonpas patches under all braces. LOLOL knee braces are on as well. All I need are two bolts next to my neck and I can be in a horror movie with Frankenstein as his mummy.... the cymbalta is giving me mixed feelings...I feel...."bubbly" like there's constant bubbles popping in my head... but I do feel less stressed and can feel a waning already. learning to type with 8 fingers majorly but the two problematic fingers are responsive vs before.... I feel revived so am going to get ambitious and get some long delayed projects done... thanks so much everyone...for your concerns and support.... I wish you can see how grateful I am...to each of you... ((((BIG HUGS)))) |
Goody....something is starting to work already.
So....about that Barbie doll. You do know that this is the Special Edition 101 Dalmatian Barbie we are talking about right? Don't mess with Taffy and her dalmatian stuff.:mad: Come here Moi....no need to spend money at the Dr. Let me fix your spine. (seeing spots) (quick....duct tape down both hands...must be nice to Moi.):hissyfit: |
hope you are doing much better Moi :hug:
take it eeeeeaaaaaassssssy back into things and keep up those epsom salts warm relaxing baths http://bestsmileys.com/water/3.gif |
ahhh, I might have to take advantage of this time since Taffy isn't allowed to smack moi. mwahahahah...*smacking taffy left and right while her hands are tied... eheheheh... ;)
thanks cheri, I am doing alright... cymbalta has been kicking my butt a bit....I came home from work yesterday about 10am and I went straight back to bed and didn't wake up until 6pm. I woke up still sleep and groggy and went back to bed at 12am and was up at 9am today. Then went back to bed soon and just got up couple of hours ago and STILL sleepy. LOL hoping the side effect would wear off soon. Was getting ambitious with projects... doing OK...still utilizing everything everyone's suggested and will find out what happens when I go see the docs... one thing that's getting better is my tics...I think it's starting to wane and that really helps... thanks so much to you all for thinking of me... (((((BIG HUGS))))) :grouphug: |
You had mentioned that things were so bad you were having problems sleeping?
I am just thinking that the Cymbalta is giving you a break to heal and calming the tics? I don't know!!! I am just glad things are calming down. I take lots of drugs that make one sleepy, I just get moving and it helps a bit. Take care moi, my friend. |
Moi,
I hope the Cymbalta will help with the pain, tics and other stuff. :hug: I take a small dose of 30 mg and it keeps my mood level and helps with the pain and stiffness (all MS related goodies). :rolleyes: I'm trying to get DH to try it because he has arthritis pain and I think it'd be easier on him than high doses of ibuprofen. Keep us posted on what the doctors say. I hope it's not too hard to get it under control. Have fun with the wee Moi-ettes. :) Moss.... :hug: Ditto to you Sweetie. |
Tic Disorder
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... :grouphug: ~~~~~~~~~~~~~~~ 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. :grouphug: 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. :hug: |
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...:rolleyes: 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...:rolleyes: ~~~~~~~~~~~~ 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...:mad: ~~~~~~~~~~~~~~ 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))))) |
Geez, Moi. I am so frustrated with this "reputable" doctor. I am not sure this guy is as good as he thinks he is. Being only 6 months in the area means he wants to build a clientele, looks like he is out one patient for sure.
The doctor that recommended him should know your experience. Not listening is a very bad trait. It has been a huge pile of "s---" on your plate. But I like the Moi I have met on the net. I like your insight and willingness to share the good, the bad, and the ugly (i.e. diarrhea...).:D It is good to see you here. I saw a post you made somewhere else so I went to TS immediately for the update.:hug: |
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