Since may of 2012 I have had 1 sinus surgery (unrelated to my TN. Had TN before that surgery), 2 mvd’s, gamma knife, and a third mvd where they cut my nerve. I only let them cut because they said they could get me off the meds. Now I’m numb in v3 where I never really had pain and dying from the stabs and shocks through my left eye coupled with the feeling that I’ve just been hit on the cheekbone with a baseball bat. All my doctors are at a loss. I don’t like the pain manage my doc I’m seeing as he won’t really give me anything for pain. His big concession to me was to give me toradol as a last ditch effort to stay out of the ER. Ice taken it twice, it seems to have no effect on my pain. I’m at a total loss. I’m told there’s nothing more they can do surgically so now they keep trying to switch me into different forms of gabapentin. Gralise wass a bust. Trying something called Horizant now. I have a lady that sells Plexus telling me they have a nerve support supplement that could really help. It feels scammy to me. Have any of you tried Plexus? Any suggestions on where I go from here. Trying like hell to stay out of the ER right now. Went last week and the stupid doctor jammed his fingers into my left eye after I told him repeatedly not to touch my face. He wanted to give me Imitrex. I talked him into 1mg of dilaudid IM which didn’t work. Not surprised he needed to do 2mg IV to break the pain. Finally started an IV and gave me fluids and nausea medication. I wasn’t even nauseous! He was trying to treat me for a migraine and even if that was my problem he was doing a poor job at that. Then I remembered July and Augustus when all the freshly graduated doctors begin their residencies. UGHHH. Worst timing for a flare up. So done please tell me there’s hope for me.
HCal. Am very sorry to hear you are having such a terrible time with “The Beast” as I refer to TN. You definitely have been through a lot and deserve credit for all you have done to help yourself get relief. It sounds relentless. I have nothing to offer but prayers and hope that doctors smarten up when you go to the ER and you do not get a newbie. That is what I had the first time I went to my neurosurgeon as she had a team of newbies who were so anxious to open my brain and fiddle around looking for the nerve that it scared me off. However a few years later I got up the nerve and gad gamma. However the remission time is over and I am back on the medicine trail “hi ho Gabapentin and carbamazepine”.
I hope there is someone on this site who can be of more assistance than myself but I am a good listener and if people need to vent I have broad shoulders
There is a solution out there for you. Gentle hugs and wishes for pain free moments
Chippy
Another useless trip to the er last night. A shot of 1mg of dilaudid in my butt and they sent me out the door before even waiting 5 minutes to see if it would work! I was up half the night in pain still until I took enough benadryl and Xanax to knock myself out. Woke up this morning and the pain is back. I’m being stabbed with a burning hot electrified railroad spike I’m my eye and someone is definitely sliding a hot knife deep into my left ear. At least that’s what it feels like. Hhis has to be some sort of cruel joke right? The pain doc won’t give me anything for pain yet admits he thinks I’ll never be rid of this pain. The ER won’t help me. I can’t seem to find a good knowledgable neurologist. Going to see a new primary care doc this morning who my friend with many health problems tells me is amazing and will help me. Fingers crossed. It’s hard to keep up any real hope at this point.
Keep the hope, it is all we have, right! You are tougher than you think, you have been through it and sure understand your frustration!!! But know there is an answer out there for you! Have you tried Northwest ER, rather than Conroe or Woodlands? I hope new primary care doc helps this morning, let us know.
Gentle hugs,
Betsy
I'm sorry you are in so much pain and I hope it stops soon. My pain started in and around my left eye so they kept trying to say it was an eye problem. It started to move into the cheek but no one listened. My cheek even turns red and swells and it does feel like someone hit it with a bat and then used a stun gun. Then it started to effect my ear, jaw and neck. After feeling like I was choking for days and no one would help I went to my GP. Thank God he always listens! He was the one that pointed out where the trigeminal nerves run to and suggested trigeminal neuralgia. Of course, I ended up in the hospital and was given multiple meds that provide little to no help. I was I could tell you there was a magic pill out there but we all just keep trying and hoping. I hope something helps you soon!