Is it just me, or do you experience these too?

Hello friends,
Simple questions. I have been in this TN “game” 10 years now, and I am noticing these things more now…
!. Is anyone’s pain worse when you first stand up?
2. When under stress, pain is worse. One of my bosses is a real bully, and recently blasted me with logic which makes no sense. Pain is worse, hands shake when I think about it.

I guess I need some good sympathy. If you have any, please write me back.



Hi kudasai,
I to have worse pain when I first stand up and quite often more frequent.
Stress can make pain worse but my hands don’t shake.
I hope you have many pain free days ahead.

Thanks! wishing you pain-free days as well.

Hi There
Stress is a major trigger for me so much so that I signed up for Mindfullness Based Stress Reduction course at a major hospital.Well-all hell broke loose on the full day -some weird meditation on fear-and anytime I go back I freeze-my body is there but that is it.
I found a MBSR course online that is affiliated with the Massachusetts school where this started -google MBSR free and Palouse.That should bring you there.I have to go to one more of these classes to qualify me to attend other all day sessions led by someone else.
But in the fall I think I will do the online course.I looked at some of the info and one of the people showing yoga is a spiritual leader who I admire and has not steered me wrong.You have my sympathy.

Hi Kudasi
I’ve had GPN since 2005 and because none of the medication for neuralgia worked for more than a few weeks at a time … believe me, I tried everything the doctors recommended!
I want into hospital for first MVD in October 2014 and second in March 2017.
I’m now on medication to help manage pain as well as the nausea and dizziness.
Pain does peak in the mornings and medication takes about 20 mins to take effect so I usually relax with a cup of coffee and my daily reading material for half an hour or so … this keeping myself calm … very little stress
Stressors throughout the way definitely aggravate and increase the pain. More so if I’m tired or feeling nauseous or dizzy (that’s my worst combination and to get through days like that I have to take a sleeping tablet and sleep through it) I’m very fortunate I suppose in that I’ve been medically boarded so work does not add to my stress…however driving in heavy traffic does increase my pain because one needs to concentrate that much harder … so I have a navigation system in my car which helps me get to my destination … pain - crazy traffic - anxiety = confusion
I find that I cannot bend or crouch down to look under the new for example because it’s immediate pain in my head and standing up makes it pound even worse … so if I want to look under the bed I must lie on the floor and get up very slowly and carefully … makes me feel 90 years old … but better than the unbeatable moments of extreme pain.
My neurosurgeon said that I should always try to keep my head above or level with my heart … any position where my head is lower is ill advised as it will cause a rush of blood to the brain and instant pain! Best advice ever!
So keep calm and keep control of the pain … it’s the only way to manage this illness and have a semblance of normality in your life.
Another word of advice that I follow is that TN/GPN sufferers need to get used to the “new you” and roll with the punches … don’t fight it because you will drive yourself and your family crazy
Take care … we can do this!

Try not to drink coffee and see if that helps, it did for me. If you have access to a hot tub try that for couple of times a day. Works like a charm for me.

Good luck

Thanks so very much for responding. It sounds like you really have a plan. Thanks for the encouragement. I know that you will make it.

Thank you so very much for the helpful tips. I will read them again and again. I will put them into practice.
I wish you many pain free days.

Dear Si,
Thanks so much for your tip about coffee. I am not really supposed to drink it, but the medicine makes me so sleepy, that on work days I usually have a little. I will cut it down more.
I have a brother who lives in Paulsbo. I love the Seattle area. I spent a summer there a long time ago. It was lovely!

And you too-

we are all in this together and eventually whatever plan we have can just be over in the blink of an eye-so enjoy what you can

I collect beach glass from the lake and make art when I can.The waves are soothing.

And fun to give away stuff I made.

Dear Ellen6
Your way to relax sounds wonderful! This week was especially stressful; but I did not see my boss, my nemesis. My relaxing thing used to be to knit. I made dish-cloths for everyone at work this past Christmas. Now THAT seems like work. I need a new stress-reliever.