Before my neck operation 18 months ago I had severe neck pain which I no longer have. The C3 & C4 were screwed together with a cage thru the front of my neck. 10 days after the operation I started having my "supraorbital neuralgia", and an off-the-air feeling which I can not get rid off. Several specialist and surgeons in this field with many scans (MRI, Xray, Ultrasound, optical, and nerve-blocks) could not find what's wrong with me**. For the last 12 weeks I have used the "Cefaly" (TENS-electrode)* for 3 hours every day. Most of my pain varies between 5 to 10 and the Cefaly may has helped me to reduce pain to 3 or 4 on rare occasions. I live in Brisbane and am now at the end of the rope. Frantically searching the www, I found "LivingwithTN" and can see that I am not alone. I wonder if any member experienced what I have as result from an operation. And is there anything else which I could try?
*) CEFALY is a electrode stuck to the forehead, runs on two AAA batteries, probably a waste of time & money.
**) The surgeons refuse to accept responsibility and just gave me a run-around.
I'm so sorry to hear that you are in pain. I too suffer from supra orbital neuralgia pain mine was believed to have been caused by sinus surgery. What do you mean by an "off air" feeling? My pain is best described like an elephant is sitting on my forehead and it hurts to blink or touch my nose. I also get electrical zaps and have other pain as well.
I take Neurontin, Topamax, and Gralise, as well as pain medications. I have tried Botox and and Supra palatine ganglion block, as well as having the offending nerve removed. Nothing has helped me yet.
Please let me know if you have any more questions or if I can be any help.
I’m so sorry to hear this.
I’m not sure what caused mine, I have a feeling it was from a molar I had pulled over two years ago, but I just don’t know. I can usually tell that I’m going to have an attack because I get a strange feeling on one part of my cheek, almost like someone is applying slight pressure with their fingers. Later I get pains that feel like either needles poking or ice pick jabbing as well as shocking pains. My first attack lasted about 4 days and my pains were 10+/10 and lasted anywhere from 4-15 minutes each. My attacks now are more manageable 4-6/10 lasting never longer than 2 minutes. I’ve never tried a TENS unit. I usually use heat, (HOTHANDS) when out in public and a rice bag at home. I may look into a Cefaly.
my off-the-air feeling is a bit like jetlag always like in the distance, besides the severe pain which fluctuates between 5 to 10 out of 10. Sadly I can not tolerate any medication except low dose of Gabapentin which does not really help much!
Not sure about the Cefaly, I was hoping it will help, but I think I just imagined that it may has helped as I just like my life back again. It looks like you are suffering a lot more than me.
I wish you well, and thanks for your input here! I am not sure at all what would possibly help me :(
Carrie B said:
I'm so sorry to hear that you are in pain. I too suffer from supra orbital neuralgia pain mine was believed to have been caused by sinus surgery. What do you mean by an "off air" feeling? My pain is best described like an elephant is sitting on my forehead and it hurts to blink or touch my nose. I also get electrical zaps and have other pain as well.
I take Neurontin, Topamax, and Gralise, as well as pain medications. I have tried Botox and and Supra palatine ganglion block, as well as having the offending nerve removed. Nothing has helped me yet.
Please let me know if you have any more questions or if I can be any help.