Trigeminal and/ or Occipital Neurolagia

[spears0227]

I had a staph infection in my salvatory glad on my right side which caused me to ahve extreme pain in my head on the right side. They said it was just a part of the staph infection but after being hospitalized twice and on many antibiotics and pain medications and visits with specialists and another hospital visit finally an ER doc said he felt it was trigeminal neuralgia. Well it is on my right side from the base of my skull all the way to the front to my nose and righte eye and jaw. I have extreme pain in around my right ear and jaw. After going to the neurologist she basically blew me off and sent me to pain management. Basically she changed one medication gave me a refill of narcotics and that was it. Well over a month later I finally got into a pain magement specialist and had an MRI, which said I was fine, and that doc said he thinks it is occipital neuralgia instead of TN. I am more confused than ever and in the same amount of pain as I have experienced since day one. I am slowly breaking down and dont know how much more i can take but the doctors are blowing me off. I am supposed to have a temp nerve block tomorrow but am so skeptical because of different opinions from every doctor I meet. I am on baclofen, percocet and trileptol. The percodet is all that helps because it helps take the edge off and allows me to functions somewhat and the baclofen helps a bit but it isnt consistant. I need some guidance on all this. I am hoping that this nerve block helps but since all the doctors have differing opinions about which nerve it is I am skeptical.

[nancy99n]

I have typical TN.  I went through a dentist, orthodontist, ENT, internist, neurologist, until I finally found a facial pain specialist that is an expert in the field.  I also went through a CT scan, and 2 brain MRIs.  Drugs started on gabapentin, which didn't work, tegretal which didn't work, my neurologist blew me off, but luckily gave me the name of the specialist.  He gave me Trileptal and after much dosage adjustment we finally got it to the level where the pain stopped.

I know when you're in pain, the following advice will be difficult because the pain takes over your life.  However, my advice is to find a teaching hospital in your nearest big city that has a facial pain center.  If you're already at one, and don't like the doctor you're dealing with -- ask to see another one.  

You need to get the pain under control -- keep track of the pain levels, where it's located, what triggers it and go into the doctor's appointments organized.  Tell them which drugs appear to be working and which ones don't -- demand that they help you to get the pain under control.

You also need to be your own health advocate and research the procedures for your condition.  The following website is very helpful and there's a lot of information and supportive people available.

http://www.fpa-support.org/

Best of luck in finding your pain solution!
Nancy