Hi:-) I am so happynto have someone to ask questions and share with that understands the emotional and physical pain I go thru during a "breakout". Thisone is a lil different. I usually only hurt in winter...this time was as soon as it got warm:( I was off my meds ( have been for bout 7 months) which are very high dose of neurontin and trileptal. The trileptal is awful!! makes me extremeley exhausted and out of my head:-( so this time I got my neurontin out and took a lil more of it and for te most part it takes care of it! which super excited me. Now what really gets me is when in pain Ive always gotten this big knot at the top of my neck and down my back on same side as pain. The first neuro surgeon I seen said this has nothing to do with it. Massages usually don't help but if I'm in alot of pain this time, my husband can press really hard on knots in my back and if it relax the one in my neck I am pain free for awhile!!!! awesome!!!! lol does anyone else experience this??? and what is this mvd everyone keeps posting about?
Hi hopeless,
I’ve never experienced the knot in the neck thing, but we’re all so different! We share similarities but it amazes me how each of us experiences things differently.
Have you ever looked into NUCCA chiropractor ? Some people have had some success with that. Type it in the search engine or google to learn more.
MVD is microvascular decompression surgery.
It is the only procedure offered to TN patients that’s not damaging to the nerve. BUT it’s the most invasive as its brain surgery.
Here’s a link to our mvd group that explains further.
http://www.livingwithtn.org/group/mvds
It just so happened that a number of us here at LwTN myself included were all scheduled for MVDs in April, so there’s a few more posts than normal.
Check out our TN FACTS on the main page to read more about other treatments for TN.
Mimi : )
Hi Hopeless, I always get hopeful when I read someone else with a neck issue just because maybe what helped me might help them. TN is horrible and I wish no one ever had to feel it. By any chance do you wake up without pain in the morning?
My research led me in a little different direction than most and one that is not well recognized by mainstream medicine yet. I found it on here posted by a lady named Kathy. Sadly Kathy was long gone when I found it but you can still read it attached to the bottom of someones reply to her if you search for it. It sounds so simple I think people are hesitant to give it a try. I went to a medical doctor in San Antonio who works with a Mckenzie physical therapist. The therapists name is Jeff Turner and he has videos on Youtube that you can find by searching Jeff Turner San Antonio Headache clinic. I only saw him for one appointment then they had me go to a physical therapist closer to my home because riding in a bumpy car can slow the process. They kept in touch with me by email at no cost. My therapist had never treated anyone with TN. He just had me move my head in certain directions and gave me a simple exercise to do. In 2 weeks my pain was greatly reduced and I was off all meds. In 4 or maybe it was 5 weeks my pain was completely gone and I have not had TN pain since November. Previously it had been 24/7 pain even on the meds. Their theory is a little different in that they think the pain is referred from a nerve in the neck. The problem does not show up on the MRI enough that it is read as a problem. When I would press on the facet joints in the back of my neck they were very sore. What I really liked is my physical therapist didn't touch me at all. I couldn't stand for anyone to touch my face. If you watch the videos, he has a test to do. The test did not work for me but the exercise still did. He is very good about answering questions. But the great thing is I think any Mckenzie therapist would work. I still have some mild ear pain so I need to go back and see if they can fix that too. I think I have something autoimmune going on that is affecting my neck. So that is the problem I am trying to solve now. If you have any questions feel free to ask. I wish you all the best in your search for answers.
shawna
I never experienced that before. But everyone is different. Maybe it's the stress during a breakout that does that to you. MVD is surgery. Microvascular Decompression. Google it and you can learn all about it.
I've wondered that too Donna. thanks:-) shawnamohana thank you:-) :-) I will check into it for sure!!!
Shawna, thanks for sharing that! I’m so glad it’s working for you!
Maybe you could start a new discussion sharing your info about this and how it’s helped you!
Thanks, (( hugs )) Mimi