Trigeminal Neuralgia (TN) -  Online Support Group

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

Janet Elg
Janet Elg
  • Female
  • London, Ont
  • Canada
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Janet Elg's Friends

  • Jackie F
  • Meme78
  • Kathy_Toronto
  • scubachic
  • elstep
  • Lisa A. MacLeod
  • elaine48
  • kwebster
  • Gloria E.
  • Christi Cronin
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  • Barb Shakespeare
  • Shirley Warren
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Janet Elg's Groups

 

Janet Elg's Page

Latest Activity

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Janet Elg commented on Janet Elg's group 'TN and TMJ Disorders'
I was denied 2 times before I got on ODSP.   Being on ODSP makes things so much easier, ur not worried about if your face with hurt for a month and u can't work.  Its a long difficult process but well worth it.  The more…
Wednesday
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Jackie F commented on Janet Elg's group 'TN and TMJ Disorders'
mom is trying to get me on ODSP too
Wednesday
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Jackie F commented on Janet Elg's group 'TN and TMJ Disorders'
no symptoms of either tmj or tn before surgery
Wednesday
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Janet Elg commented on Janet Elg's group 'TN and TMJ Disorders'
That's awful.  I don't technically have TMJ.  When I had braces they put these "posts" on two of my teeth to stop me from biting off my lower brackets.  And having those 'posts' on for 2 yrs really over…
Wednesday
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Jackie F commented on Janet Elg's group 'TN and TMJ Disorders'
no symptoms of either tmj or tn. the doc yesterday said i am bilateral....nerve wise as well as the tmj
Wednesday
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Jackie F commented on Janet Elg's group 'TN and TMJ Disorders'
no 4 yrs ago i had MAxillofacial oral surgery to correct bad overbite. in the second half the doc allowed a main nerve in the lower jaw to snap.  and the lower jaw broke 4 saw blades there for the doc could have damaga soft tissue (ligament,…
Wednesday
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Janet Elg commented on Janet Elg's group 'TN and TMJ Disorders'
Yes there are people that got TN after an oral surgeon was removing wisdom teeth and nicked the nerve.  And my TMJ was cause by an orthodontist that didn't listen when I told him many times my jaw hurt.  My dentist that is treating my…
Wednesday
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Jackie F commented on Janet Elg's group 'TN and TMJ Disorders'
has anyones TMJ and/or TN been caused by a sloppy doctor
Wednesday
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Meme78 left a comment for Janet Elg
Thanks for the support Janet!
Tuesday
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Meme78 and Janet Elg are now friends Tuesday
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Janet Elg replied to Janet Elg's discussion 'Anyone in or around London, Ont wanting to meet once in awhile?!' in the group Canadian Members
So any ideas of the next time you'll be coming to London?  I would love to meet you.   I'm busy every Wednesday and every other Thursday.   Also I don't go out on the weekends cause the buses run slower on the…
Tuesday
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MEDICATIONS & SIDE EFFECTS

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A forum to discuss medications used to treat TN/ATN, the benefits and their side effects and complications.See More
Janet Elg joined Gloria E.'s group Tuesday
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My face has hurt allot lately. Anyone else been having it too?
Status posted by Janet Elg Tuesday
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TN and TMJ Disorders

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A forum to discuss issues relating to TN and TMJ disorders. See More
Jackie F joined Janet Elg's group Monday
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Weather Pressure and Storm Front Sufferers

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For people that can feel storms coming.  And anyone who can tell you the weather pressure based on how much pain they're in.
Meme78 joined Janet Elg's group Monday
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I'm in allot of pain today. Jaw pain and just general dull ache today. Good thing I have nothing to do until this evening.
Status posted by Janet Elg Jan 20

Profile Information

Please indicate your membership type
Patient
What type of facial pain do you have?
Type II (Atypical)
What treatments have you undergone (or will undergo)? With what success?
I was on Amitriptyline, Carbamazapine and Nortriptyline and I tried nerve injections, they made the pain worse and didn't last long. I am currently taking 300mg Gabapentin 7/day, 2mg hydromorphone 4/day. For bi-polar disorder seroquel 200mg, Depakote 750mg. For sleep Mirtazapine 15mg and trazadone 100mg.
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?)
I've had facial pain as long as I can remember. Been to the dentist a million times, had an mri and ct scan and still no answer. I had to wait 10 months to get in to see a neurologist and when I finally saw him, he didn't listen or care. If I wasn't in serious pain I wouldn't have waited 10 months, I would've just given up!!! I now plan on applying for odsp cause i've had anxiety and bipolar disorder for 12 years and now this too. I recently had a MRI on my TMJ and found out I have TMJ disorder and will need either a splint or orthodontic braces for the 2nd time. I have enough teeth pain that will really hurt. But hopefully once that treatment is over my jaw won't hurt as much, as often.
Would you like to recommend a doctor, therapist or a hospital?
no

Janet Elg's Blog

Janet Elg

Yay. . . BOOO!

I went for my first consult at chronic pain management.  My doctors name is Ghenash Ram.  I was soo happy when I heard him speak because he speaks fluent english.  He listened and was really nice.  He thinks I have fibromyalgia type symptoms.  And that I may have TMJ.  He wants me to have MRI's and blood work done.  He also wants me to see a rheumatologist for my cracky joints.  So the yay is that they can probably help me with my pain.  But the boo is it hurts to learn that there is more wrong… Continue

Posted on March 1, 2011 at 12:00pm — 3 Comments

Janet Elg

One foot wrong, I'm gonna fall . . .

Well, if TN isn't enough fun, I'm also bipolar, but I've been pretty sure of that for years, but wasn't diagnosed until a months after I was diagnosed with TN.  I'd been running on a wrong diagnoses of depression for 13 yrs.  Anyways, I've been stressed lately cause I'm still waiting to hear from ODSP whether I was accepted or not.  And I'm stressed because my brother is being a real prick towards me.  He can hate me all he wants but stopping me from seeing my niece at my birthday is going…

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Posted on February 18, 2011 at 9:50am

Janet Elg

does anyone else have this. . .?

Ever since I was diagnosed with TN I've noticed or wondered if anyone else experiences these things too. . .

 

The morning after i have allot of pain,  I blow my nose and huge green or red blobs come out of one or both nostrils.  There isn't normally anything like that. 

 

My face really hurts around my period.  For about 15 days in a row my face hurts really bad.

 

When the pressure goes over 102KpAs I find my face hurts the most.  If there is an…

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Posted on February 3, 2011 at 8:58am — 4 Comments

Janet Elg

CPP and ODSP

                   So I applied for ODSP and CPP.  I also applied for rent supplemented housing.  Housing will probably take years to get placed.  The locations and buildings they have for social housing are actually pretty decent.  That will be awesome to have my own apartment. 

                  I sent my ODSP and CPP applications in September 2010.  I got a phone call from CPP and a letter in January saying I was being denied.  I think I'm eligible because TN, bipolar disorder and…

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Posted on January 23, 2011 at 1:59pm — 6 Comments

Comment Wall (17 comments)

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At 1:20pm on February 7, 2012, Meme78Meme78 said…

Thanks for the support Janet!

At 11:07am on January 6, 2012, elstepelstep said…

sorry to hear that Janet, hope the pain is beginning to get under control.     I did a silly thing went on an early morning walk, met up with a group of friends, although i was covered up the cold effected my TN.    I am now in bed with a warm pack next to my cheek/jaw.   I am lucky it did not set of TN trigger just the tooth ache which is uncomfortable but nothing like the pain of  electric TN        My thoughts are with you xxx

 

At 6:40pm on November 02, 2011, Barb Shakespeare gave Janet Elg a giftBarb Shakespeare
At 1:54pm on May 9, 2011, SheilaSheila said…

Hi Janet,

   Actually I was having a premature baby. Im hard labor for 3 weeks, IV in both arms trying to stop labor, and they called my hospital room and screamed at me, swore at me for faking labor to get a "vacation" in the hospital. They were tired of taking care of my other child, only 2 years old, I guess. Then I was hemorraging after, and my I had to have a hysterectomy or bleed to death, and my mother in law screamed at me, saying that I was taking away her future grandchildren! I told her I had no choice, I'd be dead if I didn't have the hysterectomy. Now she has so many greandchildren she is burned out by them all wanting her help and time. Strange family. Many  nightmares, glad my ex left so I can be away from that family. The situation you mentioned with your Dad and the hammer...OH MY STARS!!!  Well, if your family doesn't understand TN, would they watch a short video about it, explaining how severe the pain is and exactly what is wrong? I could probably find one for you.

Blessings, Sheila

At 7:44pm on May 8, 2011, SheilaSheila said…

Read your comment up top. I saw a show about this just last week. It talked about how hard family gatherings are. Every family has issues, but the problem is that there is a social art that people have not been taught for generations. It is knowing when to talk about a subject or not. Saving tense discussions for the right place and time, and a family gathering where it causes others to be unhappy is not the right place or time. People have forgotten social skills or manners and common sense anymore. Especially government and medical staff. lol.

    My inlaws were very cruel to me, told me I was faing lupus, faking premature baby, faking broken leg, everything...so glad hubby left me, I am saved from them.

Blessings, Sheila

At 10:37pm on April 17, 2011, StefStef said…

Don't feel like the lone ranger, Janet, in having your family not believe you.  My Dad has been great, but my mother wanted me to mail her the diagnosis sheet telling her I had Trigeminal Neuralgia, as if I would lie about something that major.  

But, then she's always been kind of a (well, you can't call your Mom that).  You get the picture!  Hugs!

At 12:32pm on March 8, 2011, Shirley WarrenShirley Warren said…
Janet I have had the same feeling on my nerve block. Ive tried dirrent kind's.and still trying .Prayer's Sent you get relief soon Shirely
At 11:01am on February 28, 2011, StefStef said…
Hi, Janet!  I saw your status and relate with how nervous Pain Clinic appointments can make one. I hope you receive understanding and compassionate care, and that your current pain med regimen adequately controls your pain.  Just remember, they work for you!
At 11:08pm on July 8, 2010, LeeLee said…
Sorry your bf and family are not supportive.That has to be very hurtful but remember there is nothing wrong with you.You can't help you have tn.If you are planning on breaking up with your boyfriend,I don't think it matters if you do it now or after your 2 year anniversary.If you think he might be supportive while applying for odsp,continue to see him and see how things go.You need to be completely sure you are ready to end the relationship before you do,otherwise you will always wonder if you made the right decision.If he has no understanding of tn and the pain you are going thru,I think it would be very difficult to have a relationship with him over a long period of time.You will be able to find a bf who is caring and understands your condition.Take Care.
At 9:11pm on July 6, 2010, LeeLee said…
Hi Janet, Sorry your bf gets so defensive and turns it around on you.After I gave my husband some info about tn printed off the internet,he seemed to have a better understanding of the pain I was going thru.I spent so much time trying to tell him about the pain but he didn't understand until he read tn was the most excruciating pain known to man.He still gets frustrated with me at times but overall is much more understanding.I don't know your bf but if he just can't understand,you are not married to him and you deserve to have a bf that is supportive.Since your family doesn't understand,you need a friend or bf that does.If you haven't given your family any info to read about tn,you may need to try that.My mom became very supportive after she read about tn.Good Luck and you definitely have my support.
 
 
 

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