We are patients living with Trigeminal Neuralgia, here for your support.

Debbie 44, Female Saint Louis, MO United States: Share on Facebook

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Blog Posts (4)
Discussions (107)
Groups (7)
Photos (3)
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Debbie's Groups

Neurostimulators of any …

14 members
BOOK CLUB

43 members

DEPRESSION AND TN/ATN

49 members
LAUGHTER & HUMOR GROUP

56 members

Low Saturated Fat Diet (…

7 members

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Debbie's Discussions

Doeas anyone use instant heat pads?
5 Replies

Started this discussion. Last reply by Rick Bruce Jan 16.

My teeth hurt - what to eat?
21 Replies

Started this discussion. Last reply by Scott Jan 7.

TNA Support Group Surgeon Presentation June 11th St. Louis MO
3 Replies

Started this discussion. Last reply by felstark Jun 21, 2011.

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Gifts Received (1)

Red Ribbon From Dawn Hadden

Debbie's Page

Latest Activity

Debbie commented on Bonnie Cute's blog post 'Lip pain'

My Neuro had suggest I try Chloraseptic spray for the pain in my mouth. I haven't yet, but it might be worth a try and give you partial relief. I am so sorry you are having that much burning.

yesterday

Debbie commented on Albee's photo

Lovely!

My house in spring time

yesterday

Debbie updated their profile yesterday

Debbie replied to D McGinnis's discussion 'Finding the humor - what have you had to give up because of this disorder?'

I am laughing so hard. I think the McDonald's comment made laugh the hardest!! I had to give ICE CREAM too and I think about it all of the time!! That one was just not fair! I had to give up my job and the paycheck…

Jan 26

Debbie replied to Rachael Manhall's discussion 'Who's TN has gotten worse over time?'

Mine has gotten worse and I don't get the small breaks that I did in the past. I have not increased my medication because I was already on pretty good doses and I don't want to be in a "coma" all day. I am very…

Jan 26

Rick Bruce replied to Debbie's discussion 'Doeas anyone use instant heat pads?'

Hi Debbie, For me, keeping my painful focus points warm is VERY important. Use heating pads, hand-warmers or "Disposable hunters glove inserts will all help. When these electric-shock pain jolts recur, it's a wake-up call to…

Jan 16

Lisa (iamrite) replied to Debbie's discussion 'Doeas anyone use instant heat pads?'

You are welcome! I own a Northface one that is made of really, really soft material. I carry the heatpads for when I have pain that just won't go away, but I can't take medication. For when the pain is not so bad as to…

Jan 16

Debbie replied to Debbie's discussion 'Doeas anyone use instant heat pads?'

Ok I just looked it up and I think I am going to love a Buff!! Heat pad or not!! It is hard wrapping that scarf around sometimes and this looks amazing. Pull it up over my face and voila!! Thank you so much!! LIFESAVER!!!

Jan 16

Debbie replied to Debbie's discussion 'Doeas anyone use instant heat pads?'

Ice pads? I don't think that I could handle that, but I do know it helps some people. What do you mean by a buff? Thank you!!!

Jan 16

Lisa (iamrite) replied to Debbie's discussion 'Doeas anyone use instant heat pads?'

YES! I carry the thermapad ones..... Oh, and I also bought some of those handwarmer things that are smaller that hunters use. Obviously they cannot stick on your skin on your face as that would potentially burn or tear your skin. …

Jan 16

Doeas anyone use instant heat pads?

It is getting colder here in St. Louis and I was wondering if anyone used instant heat pads. If so, what type do you have and do you have a way to wear them or do you just hold them? I was trapped in the house for 5 days, but as a mother, need to go places occasionally. Thank you! DebbieSee More

Discussion posted by Debbie Jan 16

5 Comments

Debbie replied to tam44's discussion 'neurontin'

Hi Tam, The best advice is checking with your pharmacist. Neurontin works wonders for many people, and for pain it was the best for me. But I was very sensitive to it and its side effects so had to stop taking it. It is something…

Jan 16

Scott replied to Debbie's discussion 'My teeth hurt - what to eat?'

Greetings all, I was visiting friends who just had surgery for a cleft palate. She had a giant syringe that had a rubber tube attached to it. She was using energy drinks and ensure ect. to eat. she could slide the tube to the back of her mouth and…

Jan 7

Debbie is now friends with elstep and lorraine Jan 5

Barb Shakespeare commented on Debbie's group 'Low Saturated Fat Diet (Frank Sherwood)'

Debbie I am living off of 1 cup of rice and 2 small meals of 1/3 cup of poridge

Jan 5

Debbie commented on Debbie's group 'Low Saturated Fat Diet (Frank Sherwood)'

If you go to www.franksherwood.com you will see the details of this diet. I have to say though, I never really stuck to it. My teeth hurt so badly off and on that I just go for SOFT and not cold or too hot.

Jan 4

Barb Shakespeare commented on Debbie's group 'Low Saturated Fat Diet (Frank Sherwood)'

Can you tell me what this is all about please? At the moment I am not really eating at all. My Christmas dinner was very boring.

Jan 4

Low Saturated Fat Diet (Frank Sherwood)

Sharing recipes and ideas for the low saturated fat diet suggested by Frank Sherwood

Barb Shakespeare joined Debbie's group Jan 4

6 Comments

Low Saturated Fat Diet (Frank Sherwood)

Sharing recipes and ideas for the low saturated fat diet suggested by Frank Sherwood

elstep joined Debbie's group Dec 21, 2011

6 Comments

Debbie replied to crystalv's discussion 'Using a "stent" for oral and facial pain'

Hi Crystal, This is great information. My "teeth/mouth" bother me so much! I hope I can try this. Thank for posting! Debbie

Nov 3, 2011

Profile Information

Please indicate your membership type: Patient

What type of facial pain do you have?: Type I, Trigeminal Neuropathic Pain

What treatments have you undergone (or will undergo)? With what success?: Started with neurontin and have switched to Tegretol XR. Currentlly, Trileptol and Topamax

Please share your TN story with us...(How did your pain first emerge and then change over time? Were you ever misdiagnosed? Do you believe your pain was caused by dental work? Have you had unsuccessful surgeries or medications?): My story. . .The pain never quite went away and after a couple of months got worse. I am in IT Support for accounting systems and was working through month-end close when just about everything went wrong and I had to back it out. The perfectionist that I am let myself get completely stressed and I developed this pain in the side of my face. . .nothing a cocktail wouldn't take care of, right? Then the next day it was worse and the 3rd day I went to the dentist. She said nothing was wrong to go to my doctor. I was diagnosed with a sinus infection and was given antibiotic and Percocet. 2 days later, I ended up in the E.R. Luckily, that doctor knew about TN and gave me Neurontin (after a CT Scan proved there was nothing in my sinuses). Then Neurontin, Baclofen, and Percocet were my daily drugs. I was "hammered" most of the time. My 13 year-old had to supervise me using the stove. I just couldn't believe that I had gone from a fully functioning person to this in days!! So, I was finally able to see a top Neurologist at Washington University at Barnes Jewish in St. Louis. I didn’t seem to ever sober up from the Neurontin, so he switched me to Tegretol. I am less hammered, but still in and out. I am off of work and worried about my job. My boss has been very understanding – I guess I am lucky he likes me. I am currently on 1200 mg of Tegretol XR and Baclofen and Percocet. I have pain, crawling, pinching, some shocking on all 3 branches of the nerve multiple times throughout the day. My family is frustrated. . mostly with me, I think. I have mood swings, of course. I am stuck at home and was running like crazy before. I left out the part that I am a part-time massage therapist on top of my other job and have lost all of those clients. I am glad to have found this forum!!

Why did you decide to join (multiple answers okay)?: Support: I want to help support others dealing with this

Debbie's Photos

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Debbie's Blog

Pottery as Art Therapy

Last year, I purchased a beautiful piece of pottery from a silent auction being held for my son's school. A few month's ago, I broke it due to a medicated episode. LOL. My neighbor had actually made it. I asked her if I could pay her to make another and she said no. But she would take me with her and show me how to make my own. I was like Really? But I went and cannot believe what a wonderful distraction it has become for me and my TN. I had trouble throwing on the wheel because my hands…

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Posted on November 19, 2010 at 8:32am — 1 Comment

Last Day of Work

I know I haven't been on here lately, but working was kicking my butt! I have just been so tired and having increased pain. So, Tuesday my boss and HR finally decided it was time for me to go. They couldn't accomodate the part-time hours my doctor has me on any longer. They chose today as my last day. A bit shocking for it to be so quick. I am having very mixed emotions but am hoping to feel better shortly, having the stress of work out of the mix (and there is a ton of stress going on here… Continue

Posted on August 27, 2009 at 11:11am — 1 Comment

Question about staying awake at work

So, I will be going back to work in a couple of weeks. Not because my Neurologist thinks I am ready, but because the short-term disability company is giving me trouble. I know that I have been very fortunate to be off as long as I have as many of you work while in serious pain, so I am not complaining. I am just so darn tired and hit a huge wall in the early afternoons as it is now. I will be getting up much earlier and going back to days of training. Does anyone have any suggestions on how I… Continue

Posted on March 8, 2009 at 6:48pm — 5 Comments

Life

I know so many of you are going through so much and sometimes I feel like I am just feeling sorry for myself so maybe venting to those who can understand will help.

Last week, we had snow and my son wanted me to play with him. Of course, I could not - way too cold - he cried. Luckily, he has friends this year in the neighborhood so I was happy making hot chocolate hourly and running the dryer like crazy. Then, this past weekend I attended my daughters cheerleading competition. I was… Continue

Posted on February 5, 2009 at 11:44am — 1 Comment

Comment Wall (31 comments)

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At 11:16pm on August 6, 2011, Vicki Dvorak said…: Hi Debbie, Thanks for your message! I'm doing pretty good...how about you?

At 11:28am on August 2, 2011, Rick Smith said…: Hey Debbie,
I am having the neurostimualtor implanted for occipital neuralgia.
I have both TN and ON.
Hope your doing well.

At 11:37pm on June 7, 2011, AliBaby said…: Hey Debbie,

Thanks for the warm welcome. I live about 2 hours north of St. Louis. which is also about 20 minutes north of Springfield, the capital city. Does Dr. Josh Dowling perform the MVD? I am very much wanting to see a surgeon, but am having trouble getting my Neurologist to refer me. Do you know this man personally?

I have never heard of your city before, but I take it that it is close to St. Louis? When were you diagnosed? And what are you taking? Hope to hear from you soon, much love

Love Ali

At 10:05pm on March 16, 2011, Dawn Hadden gave Debbie a gift…: Red Ribbon
Red Ribbon
From the Gift Store

At 10:03pm on February 5, 2011, Rachael Manhall said…: Thanks Debbie for your warm welcome!
I have a referral to see a neurologist and neurosurgeon, so at this point I will go and see who ever can see me first :)
Rachael

At 12:40am on February 4, 2011, Nikki said…: Hello fellow St. Louisian (not sure if thats even a word)! Isn't this weather we are having just wonderful! I have to mentally psych myself up every morning I have to go outside at 7am to scrape my car off. It's the worst. I have found that wearing the neck warmer I have from when I used to ski really helps block the cold wind from my face. It kinda makes me look like a bank robber but hey, whatever works! Just thought I'd share!

At 7:47pm on January 25, 2011, Teresa Deneen said…: Thank you very much Debbie! Its good to have the support of ppl that are going through the same thing. Have a wonder day!

At 4:48pm on January 22, 2011, Karen said…: Debbie - Thank you.

At 3:48pm on January 18, 2011, Sarah Hobbs said…: up to a chat???

At 10:14pm on December 21, 2010, Shirley Warren said…: Debbie thank you so much for reminding people do care and your help in reminding me that . Prayer's go out to you and your family' I know how these med's get us so tired.