Hi. My name is Holly. I have just been diagnosed with Trismus and am looking for support and direction from people who have experienced this. I am currently on so many medications for pain control that I can't stay awake long enough to do the exercises required. I've been told my trigeminal nerve is more likely involved so I'm on Neurontin, Trileptal, Trental, vit E, Oxycontin, Celebrex. And with all of this and more I am still having too frequent breakthrough pain in my ear, jaw, and face on the radiated side. Do any of you who also suffer from Trismus have this much pain and how soon can I hope to get relief after doing the exercises? Is my pain normal?

Actually to me your pain sounds exceptionally high. I've never experienced trismus - though I did loose a lot of stretch ( jaw area ) after rads. I'm not sure how far out of treatment you are but I'm wondering if some of it may be due to lymphedema in the area - I know it sounds strange but Im asking for a reason - I too get some jaw pain, this can radiate up to your ear - for me - I've found that the side that got the bulk of the radiation is the worst - I find if I massage my lymph nodes to draw out some of the fluid from the area and then massage my jaw it helps considerably - the build up of fluid in the tissues can cause pain, so maybe you have a combination of stuff going on. But you're on a lot of drugs - I'm thinking maybe it would be best to try and find maybe one that works for you. It's impossible to live your life if you are out cold because of the meds. I'm not sure if you have extra medical coverage that allows for things like acupuncture but it also may help. - one session may not - but a few with someone who knows his job well ( a certified naturopathic dr. ) may be able to loosen up the area and bring blood flow back to the muscle and break up the scar tissue. They did a study a while back on acupuncture and swallowing and found that acupuncture helped 80 % of the tube feeders involved in the study - get off the tube and swallow again. THe same thing may be possible with your problem. Everyone responds differently of course - but it has really helped with healing after my neck dissection, and range of motion, and fibrosis. If you have coverage it can't hurt to try. also if you can get your two gloved fingers into your mouth and touch the muscles behind your molars where the top and bottom molars attach - try massaging there. Finally not sure how you take your meds but maybe take the most effective pain med and then do your exercise once the edge is taken off... Then take the rest and have a nap. Finally your tiredness may be related to a cooked thyroid... Perhaps have your levels checked but only if youre more Han 5 months out. Hope some of his helps! Good luck!

Holly,

Welcome to OCF, glad you found us my dear, sorry you had to!

Trismus is common in oral cancer and there are exercises and the like to help, therabite would also be a tool for. The pain you are experiencing isn't normally associated with trismus so most here will not be able to relate.

Your Dr's are saying that your pain is neuropathic (nerve pain) and the reason it's so intense is because it involves the Trigeminal Nerve. Trigeminal Neuralgia (or TN) is one of the most painful conditions known, so it makes sense if you have trigeminal nerve pain you are on so many drugs. Generally the first line of treatment for TN is Carbamazepine and I'm surprised it's not on that list. Second line treatments usually go to a mix of opiate(oxy)and an anticonvulsant (gabepentin/neurontin & trileptal) however low dose antidepressants are used as well.

Facial nerve pain I also suffer from, thankfully not from the Trigeminal Nerve (Cranial Nerve 5), but it's very painful due to how closely tied all of the nerves in your face are (most terminate at the trigeminal nucleus). My 7th cranial nerve on my right side was severed during my mandiblectomy, paralyzing the right side of my face, I had a procedure called a CN7-CN12 switch nerve graft that pulled my 12th cranial nerve (paralyzing half my tongue) and grafted it into my damaged 7th cranial to try and restore function. Sadly it didn't however it did help ease the neuropathy I experience a little.

Neuropathy is tricky and can be hard to treat. For me until I got a handle on it, I used marijuanna and it did shut down the pain at night and allowed me sleep. Lidocaine can also be used and is effective in some cases as is Transcutaneous electrical nerve stimulation.

Here is a link to the Mayo Clinic's write up on TN that may give you some options on treatment. Good luck, sorry you are in pain but hopefully with help you can find solutions.

http://www.mayoclinic.com/health/trigeminal-neuralgia/DS00446

Eric

nona,

my recurrance is putting presure on a nerve bundle just behind my ear that is causing both trismus and all the pain you described. My case is completly different then yours but my doctor put me on"Gabapentin" which works on the lineing of the nerves. i was amazed at how fast the pain subsided. Talk to your doctor about trying this drug. It only took one pill for me to know it was working. I still take other drugs for breakthrough pain but this one does the heavy lifting on reducing the pain.

Neurontin = Gabapentin

I have tismus but do not have pain with it. You are having way more pain than anything I have experienced with trismus. I have had severe pain associated with surgeries and recovery from radiation. I have taken neurontin which worked very well for me. Hope you get some pain relief soon. Nobody should be in that much pain!