Help..What to do Next? Trigeminal Neuralgia PLUS

[tryingtosmile]

Hi,
I've had TN and sphenopalatine neuralgia for almost 5 years and have had MVD, Gamma Knife, numerous blockscryoablations and now balloon compression. I also have migraines and cluster headaches (3-4x year) I have fibromyalgia, Crohn's disease, TMJ, Interstital Cystitis &High Blood Pressure (can't imagine why). I take oodles of medicines for the above but for some reasom my Neurolgist and Neurosurgeon that treat me for the TN/SN & HA keep telling me that standard pain medicine won't help "this type of pain" I have maxed out on the seizure meds I take 2 right now plus an antidepressant(I've tried them all, gone through numersous surgeries, inhale Oxygen, spend many trips to the E.R. when the pain is too much to bear, yet they will not prescribe more than the occassional 5mg Vicodin tablet. I work 2 jobs (I've missed alot past 2 years) They say "why give you something that doesn't work and narcotics don't help nerve pain" I end up with nothing while I wait for there next brilliant surgical fix as I make trips to the ER. There must be a better, less expensive way. I've read about people with arthritis popping Percocet for god's sake or with bone spurs taking lortabs. What is wrong with the medical community when someone who suffers from such a painful condition can't get help to enable them to continue working. Perhaps if a nuerologist/neurosurgeon ever experienced TN/SN or a good cluster headache they may rethink "what helps".  My next offer is to have some "stimulator" implanted in my head as a "permanent" pain fix. Sounds good doesn't it? Anyone ever hear of this?Thanks for "hearing" me vent. I would love any advice regarding pain management options.

[Mollyrae]

Hi Shelbar:

This is a very old post and the poster is most likely not around anymore. If you would like an issue addressed, please start a new thread.

Thank's

[shelbar]

I am worried I am getting TN. I have had many procedures done on my teeth including implants. Ever since I have a "funny" feeling in my right temporal area, the inner corner of my right eye "stings" and my vision in my right eye feels different. Also my right eye is kinda red and irriated. My lower right jaw aches and I feel it to my right ear. Nothing what I would consider painful but the entire right side of my face just feels different. When I talked to my doctor about it he said it sounds like TN but left it go at that. I only mentioned it to him because I was there for a "lump" in the right side of my jaw/neck. He thought it was a blocked salivary gland and ordered a CAT scan for me. Can this all be connected somehow? Will I end up getting full blown pain from TN?

[Tuckamore]

Morning Tryintosmile:
Yes you have your plate full. Are they giving you something for nerve pain like Noratin (sp). It is difficult to get anything to touch nerve pain but I have sound that along with the specific meds they give for nerve pain, a bit of Vicodan or Percocet also helps take the edge off. Maybe it's beacuse it just makes you feel better but whateve it is I bleive it helps.

And you are not out of line to insist on pain medication. Life is too short to be in anymore pain that we have to be. If your physician won't give you opiates than I agree with TMA, look for another who will listen to you. You are special, just like all of us and you deserve to be as comfortable as medical science can make you. It is your right. And never forget that you hired this physician; he/she works for you. If your plumber failed to "fix your pipes" to your satisfaction what would you do????  

Take care and I hope you are feeling better soon. And please keep us posted. Tuck

[Cindee56]

I don't have any real advice for you, I just want you to know I feel for you.  I suffer from TMJ also, and fibro, arthritis, spinal stenosis and degeneration, cervical herniated discs, back problems, knee and hip problems, high blood pressure and high cholesterol and thyroid problems.

I know what it's like to have all this stuff going on and get the run around from doctors.  Right now I have a terrible headache/ear/jaw pain thing going on, and I tried everything and nothing helps.

I don't know what to do either!  But I hope you feel better or find something to help.  If you do, please let me know.

[Toomanyadvil]

Hi trying to smile

It certainly sounds like you have alot on your plate. I can understand how frustrated you must be to not be getting the medications you need to help control the pain.
Have you seen a pain specialist?
Maybe asking your nuerologist and nuerolsurgen for a referal or one of your other DR's for one.
It does seem like there not even giving you a chance to try the medications before they say they wont work for your pain.

How about getting a second opinion?
I can defenitly understand your hesitance to have anything implanted in your head. My advice would be to tell your DR's you would like to try the pain medication before taking that kind of drastic step. Ask them what the harm is trying it before having something implanted in your head.  And if they say no, then I would get another opinion until someone finally heard me.

Please dont give up if you feel strongly about trying the medication. I know its also frustrating to go see other DR's, but if yo dont feel your DR's are hearing you then I would suggest finding one that will.
Sometimes you find a DR with a 2nd opinion that has a whole other view on what the next step should be and what medications may be able to do for you.

Please keep us up to date on what is happening if your able. Vents are always welcome!

TMA