Recovering today from one of my worst intractable pain daily episodes

Had to suffer at home with excruciating pain and loads of pain meds, lidocaine patches, ice packs, anti-anxiety meds…because outside stress not under my control is increasing and causing daily pain to worsen. Went to ER for IV meds a couple of weeks ago so couldn’t go again yesterday-too soon & likely wouldn’t treat me. Couldn’t chance waiting hours only to be told they couldn’t give me the IV med I need for intractable pain. Been there-done that and suffered horribly waiting hours without taking ANY meds to curb escalating pain. Just venting after yesterday’s nightmare pain!

Thank you Jamie for your kind and supportive words. Especially for saying a prayer for me! I’m a big believer in prayer and have been recently going to a prayer meeting once a week to be prayed over for healing of this disease. I too was a teacher - for 23 years. Special Education secondary students with severe behavior problems. THANK GOD I retired BEFORE this disease entered my life!! I could never hold any job now. But the good news is today was better than yesterday’s day from hell. I have 24/7 pain too. Dependent on pain meds now. It’s just a matter of how many doses in a day. Today just one dose. That’s a victory. BUT I WANT A CURE FOR ALL OF US!!!

I sent you a message…keep posting!
Has anyone suggested a PNS for you?

Thanks so much KC for the info you sent. It will make me more likely to try other methods of delivery for nerve pain. I had been reluctant to try before.

KC - what is a PNS?

Put in PNS… In search box here

Are you a candidate for MVD.? If you email dr. Casey… You will find out!

Hi Kc. No Dr. ever mentioned PNS so I looked it up and will add it to list of questions to ask a specialist in Boston when I find a good one. I’m in little RI so no specialists here! I’m not a candidate for any of the surgeries or treatments for TN. My condition is one of multiple areas and VERY Atypical and complex. Surgeries & treatments would WORSEN my conditions, according to Drs and research. So pain meds daily. Looking into the medical marijuana Dr advised. Also a series of treatments with a machine called the “Scrambler” which seems similar to PNS but not implanted. It used electrodes & mild elec currents near pain areas to “recalibrate” the malfunctioning of the brain’s pain signaling. It’s $3000 & not covered by insurance so I can’t afford that anytime soon. But good to know about in case I hit the lottery! Be well.

Kc - I e-mailed Dr. Casey for info and recommendations of Drs in my area near Boston. Since I have SOOO Atypical Facial Pain - not even really TN - just involves the Trigeminal areas - I’m not a candidate for most any procedure for TN patients. Don’t even know if PNS is appropriate for me. I’ll wait to hear back from him with ideas. Thanks for the recommendation.