# Coping with Living With TN **URL:** \ **Category:** General TN & GPN (Old Site)\ **Created:** [September 30, 2012, 3:58am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422 "2012-09-30T03:58:43Z")\ **Posts on this page:** 20\ **Page:** 1
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [September 30, 2012, 3:58am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/1 "2012-09-30T03:58:43Z")
Hi Everyone, As I continue to battle with atypical TN almost a year on from an MVD my wife continues to write about our experiences. There is nothing like sudden or unpredictable illness to throw you off kilter. In the tightly packed, fast paced lives we lead, there is little room for a virus or broken limb never mind the onset of trigeminal neuralgia. In Gilly's latest post she poses the question of how you piece your life back together after the onset of TN and makes some suggestions that have helped us both - her as a caregiver and me as her very appreciative patient! You can read the post The Jigsaw Puzzle Of Life at. [http://gillycannon.blogspot.com/2012/09/the-jigsaw-puzzle-of-life.html](http://gillycannon.blogspot.com/2012/09/the-jigsaw-puzzle-of-life.html) Take care Jon ---
**Author:** ![Trish1](https://avatars.discourse-cdn.com/v4/letter/t/8e7dd6/32.png) [@Trish1](https://forum.livingwithfacialpain.org/u/Trish1)\ **Post date:** [September 30, 2012, 6:46am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/2 "2012-09-30T06:46:02Z")
Thanks for sharing, it was very thoughtful post. Making long term plans is one of the things that we find so difficult as I live in fear of always being the one to let people down. Gone are the days when we booked tickets to the theatre or the ballet. Take care Hugs Trish ---
**Author:** ![Sheila\_W](https://avatars.discourse-cdn.com/v4/letter/s/e274bd/32.png) [@Sheila\_W](https://forum.livingwithfacialpain.org/u/Sheila_W)\ **Post date:** [September 30, 2012, 5:35pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/3 "2012-09-30T17:35:20Z")
I agree with Trish. All of a sudden we become "undependable" and I hate that. Thanks MDjon for bringing your wife's post to our attention. I enjoyed it. ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 3, 2012, 12:53pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/4 "2012-10-03T12:53:01Z")
Hi Trish-thank you for leaving a comment. Yes the unpredictability has definitely affected our social life and my wife really doesn't like going out without me. Puts a pressure on us all and our kids. I feel very bad about this. But we accept plans to those who understand we may cancel at short notice or we would feel like hermits! Please enjoy Gilly's other posts at [http://gillycannon.blogspot.com](http://gillycannon.blogspot.com) . She has written alot about TN there! Jon Trish said: > Thanks for sharing, it was very thoughtful post. > > Making long term plans is one of the things that we find so difficult as I live in fear of always being the one to let people down. Gone are the days when we booked tickets to the theatre or the ballet. > > Take care > Hugs Trish ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 3, 2012, 12:57pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/5 "2012-10-03T12:57:44Z")
Hi Sheila -thank you for leaving a comment. Much appreciated. I agree with you both. I also find that because I have to be as dependable at work as I can be, it is the social plans that take the worst hits, because I am often exhausted from the meds and/or have pain....It is a constant juggle. Since I came off tegratol however I am less brain fogged and memory challenged which is a bonus. I am on lemotrigine which has way less side effects. Jon Sheila W. said: > I agree with Trish. All of a sudden we become "undependable" and I hate that. Thanks MDjon for bringing your wife's post to our attention. I enjoyed it. ---
**Author:** ![MimiF](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithfacialpain.org/mimif/32/5948_2.png) [@MimiF](https://forum.livingwithfacialpain.org/u/MimiF)\ **Post date:** [October 3, 2012, 1:06pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/6 "2012-10-03T13:06:18Z")
Jon, thanks for sharing, and thanks to Jilly for writing it. I immediately connected with the Jigsaw puzzle analogy. It was right on! I’m so very glad for you that you have a caring spouse who also knows to care for herself as well, it’s so important. I’m lucky that way too although I have to push my husband a little to go out and do things for himself. : ) Hope you are well, Mimi ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 3, 2012, 1:18pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/7 "2012-10-03T13:18:34Z")
Hi Mimi, I'm very glad this resonated with you. TN does feel as though someone has thrown a lot of puzzle pieces in the air ,that land behind the sofa and upside down. I hope you'll read some other entries of Gilly's about TN at [http://gillycannon.blogspot.com](http://gillycannon.blogspot.com). There are a lot about being the caregiver which may interest your husband. How long have you had TN for? How do you cope with living with it? Thank you very much for leaving a comment. Jon ---
**Author:** ![MimiF](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithfacialpain.org/mimif/32/5948_2.png) [@MimiF](https://forum.livingwithfacialpain.org/u/MimiF)\ **Post date:** [October 3, 2012, 4:43pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/8 "2012-10-03T16:43:53Z")
Jon, I have had TN since 2002, 8 of those years I was in remission. It came back with a vengeance in 2010… Progressively getting harder to manage with meds. HonestIy, I get by , one day at a time. I’m generally a very positive person, but TN can bring me to my knees . I’m currently off work due to a vertigo/ imbalance issue, throughout this past year my TN has relapsed so I’m thankful in an odd way that I am off to be able to deal with the TN as well. How are you doing with your TN journey ? Mimi ---
**Author:** ![anon25930859](https://avatars.discourse-cdn.com/v4/letter/a/4491bb/32.png) [@anon25930859](https://forum.livingwithfacialpain.org/u/anon25930859)\ **Post date:** [October 3, 2012, 5:37pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/9 "2012-10-03T17:37:37Z")
You and others in this thread may find some useful thoughts and pointers in our article on "Coping With Crisis", Jon. It's one of the cluster of information articles under the Face Pain Info tab of our site menus. Likewise suggest you run a search on "spoons" in our site search window. You should find an article about managing your energy levels when energy is limited by TN. Go in Peace and Power Red ---
**Author:** ![Sheila\_W](https://avatars.discourse-cdn.com/v4/letter/s/e274bd/32.png) [@Sheila\_W](https://forum.livingwithfacialpain.org/u/Sheila_W)\ **Post date:** [October 4, 2012, 6:52am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/10 "2012-10-04T06:52:50Z")
Jon, Red is referring to a story called "The Spoon Theory" that was written by a woman with lupus, trying to explain the chronic illness lifestyle to a friend. It became so popular online that there's like a cult following called "Spoonies". I'm one of them. You can buy spoon jewelry and T shirts and you might find picture posts online regarding spoons, or may see someone saying "wishing you many spoons today", etc. Here's the story. [www.tinyurl.com/spoontheory2](http://www.tinyurl.com/spoontheory2) . Best wishes, Sheila ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 4, 2012, 4:42pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/11 "2012-10-04T16:42:44Z")
Hi Mimi, You have a great attitude! I was first diagnosed in 2008. I am doing much better than I was before my MVD last August. when my TN also came back with avengeance It took me a long time to get over the surgery and I had a lot of residual pain. Now I am back at work full time . I have no electrical pain but continue to have a very sharp headache on the same side as my TN. This is mostly controlled with migraine meds. I also have ATN in my cheek and close to the corner of my mouth. I also try to stay very positive and I would love to get off the meds and get rid of their side effects!, But I am grateful not to have the electrical pain anymore and for my wife and three boys who have been an incredible support. TN is an ongoing battle and it is the realization that TN is not just an acute illness but a chronic one that may be with you for ever is a real adjustment. Mimi said: > Jon, > I have had TN since 2002, 8 of those years I was in remission. It came back with a vengeance in 2010... Progressively getting harder to manage with meds. > HonestIy, I get by , one day at a time. I'm generally a very positive person, but TN can bring me to my knees . > I'm currently off work due to a vertigo/ imbalance issue, throughout this past year my TN has relapsed so I'm thankful in an odd way that I am off to be able to deal with the TN as well. > How are you doing with your TN journey ? > Mimi ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 4, 2012, 4:43pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/12 "2012-10-04T16:43:21Z")
Thanks Red-I'll look into it. Richard A. "Red" Lawhern said: > You and others in this thread may find some useful thoughts and pointers in our article on "Coping With Crisis", Jon. It's one of the cluster of information articles under the Face Pain Info tab of our site menus. Likewise suggest you run a search on "spoons" in our site search window. You should find an article about managing your energy levels when energy is limited by TN. > > Go in Peace and Power > > Red ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 4, 2012, 4:46pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/13 "2012-10-04T16:46:19Z")
Thanks Sheila-I think my wife discovered this site and has told me about it. I am still adjusting to the idea that even after the MVD I am living with a chronic illness. It is hard to make that jump. Jon Sheila W. said: > Jon, > > Red is referring to a story called "The Spoon Theory" that was written by a woman with lupus, trying to explain the chronic illness lifestyle to a friend. It became so popular online that there's like a cult following called "Spoonies". I'm one of them. You can buy spoon jewelry and T shirts and you might find picture posts online regarding spoons, or may see someone saying "wishing you many spoons today", etc. Here's the story. [www.tinyurl.com/spoontheory2](http://www.tinyurl.com/spoontheory2) . > > Best wishes, > > Sheila ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 5, 2012, 12:35am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/14 "2012-10-05T00:35:22Z")
I totally agree with you,TN is a nightmare and its relentlessness is a great challenge. The tegratol made me lose my memory, my creative thinking and my sharpness all of which I need for work. It is such a juggle to choose to be with less pain or less memory.. The drugs I am on now are much less invasive in those ways. My memory is back and my problem solving skills seem to be more acute thank goodness. How are you doing? Are you managing to work at all? Jon ---
**Author:** ![Sheila\_W](https://avatars.discourse-cdn.com/v4/letter/s/e274bd/32.png) [@Sheila\_W](https://forum.livingwithfacialpain.org/u/Sheila_W)\ **Post date:** [October 5, 2012, 1:10am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/15 "2012-10-05T01:10:17Z")
I just read on here lately someone who said they started taking lamotrigine (another anti-seizure med), but it didn't have any of the groggy side effects like neurontin, tegretol, etc. Might want to ask your Dr. about it. MDjon said: > The tegratol made me lose my memory, my creative thinking and my sharpness all of which I need for work. ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 5, 2012, 4:22am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/16 "2012-10-05T04:22:59Z")
Sheila-I am on lamotrigine now. my memory, etc are all much better as a result. However it takes 6 - 8 weeks to kick in so you have to put up with the pain until it begins to work… Jon ---
**Author:** ![Sheila\_W](https://avatars.discourse-cdn.com/v4/letter/s/e274bd/32.png) [@Sheila\_W](https://forum.livingwithfacialpain.org/u/Sheila_W)\ **Post date:** [October 5, 2012, 7:44am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/17 "2012-10-05T07:44:34Z")
OIC, good to know. I hope it will work well for you ASAP. ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 5, 2012, 11:39am UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/18 "2012-10-05T11:39:43Z")
Thank you Sheila I have been on lamotrigine for 4 months now so I can testify that the drug has worked brilliantly for me. I also have an incredible neurologist Dr Jason Rosenberg who is head of The Headache Center at Johns Hopkins in Baltimore. He has an incredible pharmacology knowledge and cares so deeply about my quality of life not just my head pain. So he has worked very closely with me to reduce fatigue and other side effects from the drugs I am on. It is incredible to have him on my side! Jon Sheila W. said: > OIC, good to know. I hope it will work well for you ASAP. ---
**Author:** ![Min](https://yyz1.discourse-cdn.com/flex027/user_avatar/forum.livingwithfacialpain.org/min/32/6259_2.png) [@Min](https://forum.livingwithfacialpain.org/u/Min)\ **Post date:** [October 5, 2012, 5:27pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/19 "2012-10-05T17:27:04Z")
Shindig. So your eye is doing even better on the Trileptal and nortriptylene?? ---
**Author:** ![MDjon](https://avatars.discourse-cdn.com/v4/letter/m/e19b73/32.png) [@MDjon](https://forum.livingwithfacialpain.org/u/MDjon)\ **Post date:** [October 5, 2012, 10:46pm UTC](https://forum.livingwithfacialpain.org/t/coping-with-living-with-tn/3422/20 "2012-10-05T22:46:25Z")
Shindig I am glad to hear your medication combo is working for you. I would say I live with the same -type 2 Tn pain, headaches on one side of my head and some pain from my MVD scar. Glad you found a neurologist who really was able to help you. Hope you will now be able to resume doing more activities etc. Jon shindig said: > Yeah the most serious of my pains cleared right up after I started both of those, including the eye completely pain free when I move it. Along with all this other crazy spasming pain affecting a lot more than the trigeminal nerve. Only thing I feel right now is type 2 TN, some headaches, and a lot of pressure in several spots. > > Min said: > > > Shindig. So your eye is doing even better on the Trileptal and nortriptylene??