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tortimomma
  • Female
  • Salisbury, NC
  • United States
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Going cold turkey

Replied May 8

Going cold turkey

Replied May 8

Neuropathy not Dystonia

Replied Apr 23

 

Welcome to tortimomma's page!

Latest Activity

tortimomma replied to suej's discussion 'new drug......' in the group Dystonia Neuro Movement Disorder
Have taken flexeril soooo many times in the past 21 years & it's still not helping that I can tell. Good luck!
November 12
tortimomma replied to beka's discussion 'Avoidable Meds for Dystonia' in the group Dystonia Neuro Movement Disorder
Oh no! I'm so sorry that your DBS surgery was a blunder and resulted in a stroke. You were so excited to have it done. That really scares me about that treatment...one little slip and you never know what hit you. Please write me and let me know wh...
September 14
tortimomma added the App My Twitter Tracker
August 21
tortimomma commented on Adrienne's group 'Dystonia Neuro Movement Disorder'
Michelle, I am like you. Botox was not effective for me & 'the pump' is now under consideration. Frankly, I don't think it will help, plus I have a difficult time with recovery from anesthesia...so I'm betwist & between! Have you decided what you'...
July 25
tortimomma commented on Adrienne's group 'Dystonia Neuro Movement Disorder'
Rogers, will this piece be on satellite (Directv) also? thanks & bless you for all you do.
July 25
tortimomma replied to Jenn's discussion 'Does dystonia affect the mood?' in the group Dystonia Neuro Movement Disorder
I totally empathize with you Michelle. You are very lucky to have the support of your guy. My ex thought it was all in my head & encouraged me to commit myself the 3rd year of beginning symptoms...how's that for support???!!! He put up with my ill...
July 16
tortimomma commented on tortimomma's blog post 'LIST OF MEDICATIONS IN TREATMENT FOR TORTICOLLIS'
Thanks for your comments. After having the last MRI & seeing how badly damaged my vertebra, disks, spinal cord have degenerated that was quite enough to tell me NO NO for chirapractic. Sometimes I feel like my cervical spine has just dropped down ...
July 16
tortimomma replied to Jenn's discussion 'Does dystonia affect the mood?' in the group Dystonia Neuro Movement Disorder
I have one daughter & one granddaughter who live about an hour's drive away. My mom, one sister, 2 brothers live within 1/2 hr drive. My head jerking & unconrolled body movements plus my 'funny' voice seems to cause them distress & it's hard for t...
July 16
tortimomma replied to tortimomma's discussion 'SAVELLA-fibro drug Q for Cervical Dystonia' in the group Dystonia Neuro Movement Disorder
Beka, Hi, hope you're doing well today. I stopped Savella after several doses. Similar side effects as with Cymbalta & Neurontin were experienced almost immediately, ie, hot flushes, nausea, dry mouth, hallucination, vivid 'bad' dreams, increased ...
July 16
beka replied to tortimomma's discussion 'SAVELLA-fibro drug Q for Cervical Dystonia' in the group Dystonia Neuro Movement Disorder
What made you stop the drug ? The side effecs ? Are you receiving any of the toxins ?? beka
July 16
tortimomma replied to Jenn's discussion 'Does dystonia affect the mood?' in the group Dystonia Neuro Movement Disorder
Absolutely!!! This is one reason why I live alone, husband of 33 yrs divorced me, have no friends, relatives ignore me, no social life what so ever, except of course doctors/nurses. If it wasn't for the internet & websites like this I would have p...
July 16
tortimomma replied to beka's discussion 'NEW Botox Spokesperson...' in the group Dystonia Neuro Movement Disorder
Personally, I think this sucks. Although Botox has not alleviated my cd/torticollis I do not wish it to be hailed as the almighty wrinkle reducer either...but whatever works for Allergan...I'm sure they receive more $$ from personal profit than fr...
July 8
tortimomma and Rj are now friends
July 4
tortimomma replied to tortimomma's discussion 'SAVELLA-fibro drug Q for Cervical Dystonia' in the group Dystonia Neuro Movement Disorder
Thanks Beka for all your info. I have tried the Savella & it didn't take very many doses to realize this one is not for me. I have tried so many meds without any relief, I'm beginning to think there isn't anything to help me & I'm so discouraged.
June 26
beka replied to tortimomma's discussion 'SAVELLA-fibro drug Q for Cervical Dystonia' in the group Dystonia Neuro Movement Disorder
Link Info on Savella : http://www.savella.com/ I dont know much about this drug as it is relatively new on the market. But, will try to do some explaining about the drug here.As a selective serotonin and norepinephrine dual reuptake inhibitor, al...
June 26
tortimomma replied to Amy K's discussion 'New Drug Approved by FDA for Fibromyalgia: Savella' in the group Fibromyalgia
I visited a rheumatologist this week; he Rx'd Savella [I got samples first, thank goodness]. I thought Cymbalta & Neurontin were bad for hot flushes...well after only 2 doses I was in the cooker, plus terrible vivid dreams [an in the middle of nig...
June 26

Profile Information

In the online health communities I participate in, I'm:
not really sure where I fit yet
The online health resource I contribute to most frequently is:
http://twitter.com/care4dystonia
This site is:
my twitter
Another place where I contribute is:
http://www.gaithercommunity.com
Which is:
a community I contribute to, my blog, my personal website
I’m also on:
http://twitter.com/tortimomma
It's:
a community I contribute to, my twitter
You can also find me at:
http://www.facebook.com/karentucker
This is:
a community I contribute to, my profile on another website
More about me (my health interests and reasons for joining WEGO Health)
Spasmodic Torticollis since 1988, undiagnosed till 1992. Had to take disability at age 42 in 1992; have been unable to hold a public job since. Nothing has helped with pain or spasm; no candidate for surgery. Major pain constantly. Would like to keep up with treatments & others who suffer this demon disorder.

Tortimomma's Blog

tortimomma

LIST OF MEDICATIONS IN TREATMENT FOR TORTICOLLIS

I'm so sorry if this is a redundant request. I have seen the list of no-no drugs for dystonia/torticollis, but is there a list available FOR the treatment of this disorder? My pain doctor doesn't have a clue what to prescribe...I'm now taking SOMA & Tramadol [which are not very effective]. I have been tried on many many meds since 1988 without much success. Some help for awhile, but soon I reach tolerance. I don't drive more than 10 miles from home any longer & don't have anyone I can de… Continue

Posted on May 8, 2009 at 3:43pm — 3 Comments

Comment Wall (6 comments)

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At 3:47pm on June 3, 2009, lissamel said…
Thank you for watching my video. My family (my side at least, not my husbands) has seen me more and more in different stages of struggles since I made this video. Mostly because I got tired of trying to protect myself and miss out on things, or make my children miss out. My Mom got a pretty big taste of it this past Monday as I had to call her to drive me and take my three year old to the doctor for I could not be a "mom" that day.

Talk with you another time,
Mellissa ~
At 1:29pm on June 2, 2009, Ellen S said…
Karen, I wish I could be of more help. My doc knew to immediately try the Sinemet which, lucky for me, did seem to help some. We made other changes too, so I am always second guessing whether the meds are helping me or it was something else. I do know if I forget a dose I am miserable. The spasms are just unbelievable. With it I appear outwardly pretty normal. :) Beka could help you better with what to ask your doc for. She's such a great reference and pal!!
At 8:17am on June 2, 2009, Ellen S said…
Hope you'll be able to make it to the webinar. Thanks for the RSVP! See you on Twitter too...!
At 2:19am on May 13, 2009, beka said…
Have you gone on the www.care4dystonia.org webpage called Oral Medications.. All the used meds are clearly listed there that have been and are used for dystonia. Please look at the site as it contains a wealth of info about PT, Nutrition, Pain, Oral meds etc..
beka, RN, MS, NP
Moderator Dystonia
At 12:47pm on April 26, 2009, Sheridragonfly said…
Totimomma,
Segmental dystonia is that I have two adjoining limbs affected..to the best of my knowledge..
I have ST or cervical , have meige and have blepharospasm Dystonia..

I am from South Carolina originally, near Myrtle Beach..
Are you a native North Carolina person?
At 3:54pm on April 21, 2009, Ellen S said…
Hello tortimomma. Welcome to WEGO Health - we're so glad you found us! Be sure to let me know if you need any help finding what you're looking for on the site.

I see you have dystonia - I do too. What kind of dystonia do you have?
 
 
 

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