How do you Mentally Cope with this?

General General TN & GPN (Old Site)
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I can't stop my mind from working .... Fear - worry - hope - disappointment -

The more I learn about TN the less I wish I knew .

I recently was diagnosed after 3 years of pain problems .

[img]http://i.imgur.com/1w4BFj2.jpg[/img]

This is a picture I made using a Fireworks simulator and custom scenery I made , this is now invading my artistic side. I can tell you how I did this - just not why?

I am not even really sure yet that this is what my pain stems from . Everything I read makes me think it is.

My pain is not so much electric in nature , but more of an extremely painful deep intense sort.

Averaging 6 episodes a day. (3 at work yesterday)

I would be interested in hearing things you may have come up with to keep your sanity and let your mind run awry . It is so new to me that it hasn't had a chance to sink in yet.

125-Shot0298.jpg (268 KB)
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Help Raise awareness. Visit my fundraising page :)

https://www.classy.org/fundraise?fcid=388697

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Thank you Blessed - and though I do not share your faith - I do respect your right to it.

This is not the time or place for a theology discussion .

Just know that I am a spiritual being , and I wish you all the best in your upcoming MVD .

Balance in my life has always been important .

I have rationalized that for all the good things that happen there must be a balancing force .

Things have been going very well for me ... A good job, a house , my dream Jeep - I gladly suffer this lot to be able to provide a comfortable place for my mother to live in her waning years .

She gave me this wonderful existence .

Today a funny thing happened - I had been going along well at work with no issues . We got to joking around about something that was very funny to me . I was laughing very much . Then the muscles in my cheek knotted up and I started to feel the tell tale warning an of impending attack. A few minutes later the FDD truck arrived and it is my job to unload .

By the time I let the driver in the door and started to unload - I was about at level 5 pain (about the limit before I have to walk away). I was talking with the driver and he was asking about Christmas ( I knew this man from prior unloads) I told him I got a diagnosis of TN for x-mas and I was having an issue at the moment.

The Funny Part - he looked at me in disbelief - then proceeded to tell me his wife has the same thing , I was surprised he knew what I was talking about . We had a long discussion about symptoms and compared notes and it was comforting to me in a way . I told him to give her all the support he could -(with tears in my eyes) This is real , it is painful and scary .

He assured me he was and will continue to do so.

Believe what you will , you get what you need when you need it.

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Hi, VeteranInPain.

Sometimes the world is just too overwhelming. I get by that feeling by focussing on what I have in life that has nothing to do with TN. I am currently running out of treatment options, so I really do know what you mean. However, I am 35, and cannot afford to let this thing take over my life!

I have found my strategies for now, and I am sure you will too, now that you know what you are dealing with. It takes a while, but once you get to know your triggers, you can work on reducing them. For me, the feeling that I can DO something helps. I therefore also try to find things that provide relief for me. This forum is great for tips. Maybe keep a pain journal to monitor pain levels in relation to time of day, activity, surroundings…?

Coping is really a matter of how you see it and what you choose to focus on. For me, keeping in touch with things I love is key. I still go out, go hiking, keep in touch with friends, travel, and work, because I don’t want to give these things up. It forces me to see life in perspective, and makes me ashamed to think “poor me” as there are a lot of people who cannot do those things. However, it is about adjusting those things so that triggers are avoided as much as possible. For instance, I go out earlier in the evening, when it’s less noisy, and to places with little or no music. I go hiking in the woods instead of windy mountaintops, and often invite friends over instead of sitting through pain at someone else’s. I can work because my job allows me an enormous degree of flexibility.

So maybe you should try asking yourself these questions: what means something to you, and do you have to give those up entirely? Or as in cognitive behavioural therapy: why do you react the way you do? What are you afraid will happen? A life in pain - well, you already know what that is like, and can cope with that, no? I am a complete atheist, and so only rely on my own ability to comfort myself. I find that these techniques help. Otherwise, there is also professional counselling.

In the end, for me it is now time to embrace that I have a disability, and that I may have to reduce my workload eventually. But I have had this for 15 years, most of the time not in successful treatment, so I do not despair yet. It is pretty bad, and that makes me calm because I know I am able to face that. There are so many other things that mean more to me, and I try to focus on those joys instead.

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VIP,I am not so new at this and it it is still very hard.Music is one way I try and escape. I am up before 5:00am the pain is enough I can’t sleep. While recently in the hospital I met a couple good friends as most of my old ones have slowly disapeared over the years.I see you have a creative side,use it, in other ways also. I have been trying to spread the word about this HORRIBLE DISEASE,just an idea, make copies of your pic. and place them places you frequent.Like i said,just an idea. Wishing you the very best and painfree days this coming New Year,Dawn

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WOW Tineline ! Thank You for the reply and like I said 'You get what you need , when you need it '

Everything you wrote hit home with me ! And maybe there is a bit of the 'Poor Me' syndrome going on here.

I have been coping for 3 years in the dark , why should a name make any difference in how I approach things.

Hopefully 15 years from now I will have the same bright outlook you have expressed here . I pretty much already have my strategies in place , I can work on figuring out what triggers I can avoid , and cope with those I cannot ( Weather fronts)

My ability to tolerate the pain when it hits is better than most , I know my limit and when to 'step away' , my supervisors know what is going on now that I have a name for this . Better than just a mysterious problem perceived as me being a wimp.

So as suggested by punkin I need to just go back to working on my Creative endeveurs , spread the word where I can , and continue to do the things that I have always enjoyed .

BTW - Tineline , Before I read this - I had bought and was filling in a journal of my issues - times , dates- triggers ,pain levels. something I can take to the Drs.

Thank You both ! This is what I needed to hear this morning.

Stop dwelling on this today and go get something done!

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http://www.livingwithtn.org/forum/topics/an-important-reminder-for-yourself-and-your-loved-ones-caretakers

Here you go…might help

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Kc, I think we are all allowed any emotion we want, this is an horrendous condition and therefore will illicit many emotions as you say. I love the idea that this group is our safe haven for all our feelings and emotions. You are very insightful .

Quoted from that link ;)

Today

I jumped in my Jeep - went out and did some things (Day Off) Wandered around Home Depot looking for something to spend my Christmas Gift cards on . Rented a couple of movies - Brought home some Wendy's take Out - Then I decided it was time to do what I had been putting off for awhile - Bought My Mother a new stove for her kitchen :) She was ecstatic LOL -Ordered it right on her computer (Used my gift cards)and having it delivered Next Weds- Took a nap , woke in pain 2 hours later :( What the heck business as usual . Do the things that make me happy today .

Kc - Thanks for the link - I am familier with the process , it is a good read that needed to be reviewed at this time .

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I get pain on top of my head that feels like exploding fireworks, if that makes any sense.

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Jasmine - Nothing makes any sense , and everything does .

Since I have been on the Tegratol - my problems are even more unpredictable . I had a 'problem just a bit ago . Like a migraine , went up to about 7-8 on 1-10 scale . started 2pm peaked at 2:15 faded by 2:30 .

It is like the Tegretol is pushing the pain out of my maxillary nerve into my Opthalmic branch .

See Diagram .\/

[img]http://i.imgur.com/DDfJPAE.jpg[/img]

The Barometer here is falling rapidly , that is always a problem for me.

Here is another image I made today. It is part of how I cope.

[img]http://i.imgur.com/wBPUXMN.jpg[/img]

There are fireworks going off , I made this in a simulator game .

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Thanks for the diagram. This condition is so frustrating. Your pictures are very good and and capture the pain accurately; they would be awesome as posters for TN.

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Hello

For myself, I take my tegrital first thing in the morning, about 180 mgs syrup and then exercise a bit. The rest of the day isa toss up. I pray and take breaks

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Happy New Year ! I would like to contribute anything to raise awareness about this frustrating condition , these pictures are just my first attempts at this (first impressions) .

I think maybe I might be getting a bit of a rash from the tegretol . just a bit of itching on my chest and chin . I have never had a reaction to anything in my life , now that is really frustrating .

I mean I don't get poison ivy when I know I have been exposed to it , friends just have to look at it and they break out.

I hope not . I need to find something that can help reduce the pain episodes.

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I had really terrible reaction to Tegretol as well it seemed the more I took it eased up on the jaw jabs while increasing the ear and upper pain. The final night I took it I thought I was going to die. I had so much pressure inside my skull I thought it was going to burst. I was up to 800mg. I quit cold turkey and within a week I could eat again and was no longer bed ridden. I don't know whether this is common or I just had an allergic type of reaction.


VeteranInPain said:

Jasmine - Nothing makes any sense , and everything does .

Since I have been on the Tegratol - my problems are even more unpredictable . I had a 'problem just a bit ago . Like a migraine , went up to about 7-8 on 1-10 scale . started 2pm peaked at 2:15 faded by 2:30 .

It is like the Tegretol is pushing the pain out of my maxillary nerve into my Opthalmic branch .

See Diagram .\/

[img]http://i.imgur.com/DDfJPAE.jpg[/img]

The Barometer here is falling rapidly , that is always a problem for me.

Here is another image I made today. It is part of how I cope.

[img]http://i.imgur.com/wBPUXMN.jpg[/img]

There are fireworks going off , I made this in a simulator game .

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VIP,well we are into the new year,hoping your pain has eased! Also hoping your spirits are better.Sometimes the two go hand in hand. This yearI have alot to be thankful for.Did in past years but had trouble seeing the good for all the pain,just has seemed like at times more then I could handle.Even now I enjoy late nights as pain decreases,better then the daytime hours.Just celebrating the new year very simple with a kind of slumber party with a couple close friends, making choc. chip cookies (soft ones) ordered pizza so no one had to cook or do dishes and made hot choc. just spent time enjoying the company of good friends.Would of had trouble saying this,this time last year.Somtimes tn and the pain it brings does become overwhelming and know matter how much we try to explain no one really gets it after 20 years I still don’t understand so my thought is then how .?am I going to make anyone else understand this HORRIBLE DISEASE that reeks havouc on our minds and bno one can see the pain we go through on a regular basis.To bad you could’nt take some of the pics. you have created and turn them into 11 by 14 inch. too hang in frames.Would love to buy a couple.I think they would be welcomed by many.Especically those of us who are’nt as talented as you are ( speaking of myself)(LOL) Praying that you have a blessed New Years Day!!I undestand that you don’t believe the same as some of us do but it cai’nt never hurt ( LOL) WISHING ALL A BLESSED NEW YEARS DAY!!! My mind has been changed also since Nov. Thanks in part do to blessednomatterwhat. You just never know what all you might get from this great web site. Soft Hugs Dawn

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Too bad you could'nt take some of the pics. you have created and turn them into 11 by 14 inch. too hang in frames.

But I could

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https://www.youtube.com/watch?v=nYrobu0qo-Y&feature=youtu.be

I also make videos - This is another way to help awareness !

I was driven out of bed this morning by pain and just made this movie today. I have to go to work later - but sometimes I get very creative in the mornings :)

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Here is a new image .

[img]http://i.imgur.com/msfBHN0.jpg[/img]

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VIP, Just watched your video and thought it wasvery good , also your last pic.that’s the one I would like a copy of. You are pretty darn creative!! Havetaken a cold so that doesn’t help much. Sure hope it doesn’t hang on for long.my tn goes down my throat and is also in my ear,little hard to tell if I have an ear infection or whatevever else do to the cold verses tn.Just wanted to say I really enjoy your art you have something good going there. The best,Dawn

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Thank You Dawn - I would be Happy to get a copy of it to you - if you cover the costs of printing and shipping I will do the rest for nothing. Making these images is my therapy , I can go into my program for awhile and just let myself go . I forget about everything while I am creating these pictures . I have been doing this sort of thing for about 7 yrs with this program and have gotten pretty good . Also I don't 'save' the files so it is a one of a kind image and can not be duplicated , not even by me . Every time I make one of these I learn something or 'see' something so the next time I open the program I will make adjustments . There may or may not be something better I can do with this one. I may try today . But the dang decorations need to come down first .