Neuralgias - Worst pain known to mankind
updated May 2021
I explained palatal myoclonus on the previous tab. Now, let's talk about the pain that went along with it. After many years of searching, the pain actually had a name—neuralgia.
TYPES OF NEURALGIAS
There are many kinds of neuralgias or nerve pain. Here are some of the cranial neuralgias:
My son had symptoms of Trigeminal neuralgia (lightning bolts in his cheeks and forehead), Glossopharyngeal neuralgia (throat pain and ear pain that felt like a thousand daggers stabbing him in the ears and sandpaper rubbing on his throat), Geniculate neuralgia (deep pain in the ear that would not relent), and Superior laryngeal neuralgia (pain on both sides of the throat shooting up to and behind the ear). He also had head pressure and occasional headaches that no medication would help. So which one did he have? He actually had them all for different reasons. His case was extremely rare and difficult, so naturally, few doctors were able or willing to help him and many decided it was all in his head. No pun intended. I may personally send each of those doctors a copy of his documented case so that they may be better informed for the next patient that walks through their door with unusual symptoms. For those physicians who thought he was crazy, perhaps I will thank them—for pushing me harder to prove them all wrong.
After a new MRI in 2013, it became apparent that a mass had built up in his sphenoid sinus. The mass that was pressing on his brain and on the Trigeminal nerve. Surgical removal of the mass resolved the lightning bolts in his face and above his eyes. But that was just one piece of the puzzle. How could so many things happen to one child? Were we incredibly unlucky? Did I do something so horrible that my child deserved this life of debilitating pain? I think not. In fact, if anything, I had always been the one to reach out to others in need. It didn't make sense and I refused to believe that this was my child's fate. I stayed in faith, put action behind my prayers, and moved forward in research and determination for a better life for my child.
There are medications and surgical options to address nerve pain. We did both for our child with the understanding that we would not stop until he got relief from his world of debilitating pain. We opted for more surgery based on his remaining symptoms after months of research. See the tab called Eagle syndrome. Full details are included in the book called Connecting the Dots documenting his case.
CONNECTION TO PALATAL MYOCLONUS
While the connection to palatal myoclonus may never be fully clear, it is clear that there is a connection between the nerves and the signals that set off the rhythmic contractions of the soft palate. My son had the palatal myoclonus before he had ear pain. Several years after palatal myoclonus and ear pain, the throat pain began. It was a progression of inconceivable nerve pain with no explanation that came from any doctors. Through prayer and research I learned about glossopharyngeal neuralgia from another patient with palatal myoclonus via social media. Thank you, God, for Facebook, and the internet.
*And recently, another patient with the exact same symptoms as my son visited a surgeon regarding microvascular decompression surgery for his nerve pain. That surgeon noted that the glossopharyngeal nerve affects the palate. This confirmed my beliefs based on my own research.
Continue to read on the next tab, Eagle Syndrome
Links to other sites:
TYPES OF NEURALGIAS
There are many kinds of neuralgias or nerve pain. Here are some of the cranial neuralgias:
- Trigeminal neuralgia
- Glossopharyngeal neuralgia
- Post traumatic neuralgia
- Temporomandibular joint disorder (TMJ)
- Superior laryngeal neuralgia (related to Glossopharyngeal neuralgia)
- Geniculate neuralgia
- Occipital neuralgia
My son had symptoms of Trigeminal neuralgia (lightning bolts in his cheeks and forehead), Glossopharyngeal neuralgia (throat pain and ear pain that felt like a thousand daggers stabbing him in the ears and sandpaper rubbing on his throat), Geniculate neuralgia (deep pain in the ear that would not relent), and Superior laryngeal neuralgia (pain on both sides of the throat shooting up to and behind the ear). He also had head pressure and occasional headaches that no medication would help. So which one did he have? He actually had them all for different reasons. His case was extremely rare and difficult, so naturally, few doctors were able or willing to help him and many decided it was all in his head. No pun intended. I may personally send each of those doctors a copy of his documented case so that they may be better informed for the next patient that walks through their door with unusual symptoms. For those physicians who thought he was crazy, perhaps I will thank them—for pushing me harder to prove them all wrong.
After a new MRI in 2013, it became apparent that a mass had built up in his sphenoid sinus. The mass that was pressing on his brain and on the Trigeminal nerve. Surgical removal of the mass resolved the lightning bolts in his face and above his eyes. But that was just one piece of the puzzle. How could so many things happen to one child? Were we incredibly unlucky? Did I do something so horrible that my child deserved this life of debilitating pain? I think not. In fact, if anything, I had always been the one to reach out to others in need. It didn't make sense and I refused to believe that this was my child's fate. I stayed in faith, put action behind my prayers, and moved forward in research and determination for a better life for my child.
There are medications and surgical options to address nerve pain. We did both for our child with the understanding that we would not stop until he got relief from his world of debilitating pain. We opted for more surgery based on his remaining symptoms after months of research. See the tab called Eagle syndrome. Full details are included in the book called Connecting the Dots documenting his case.
CONNECTION TO PALATAL MYOCLONUS
While the connection to palatal myoclonus may never be fully clear, it is clear that there is a connection between the nerves and the signals that set off the rhythmic contractions of the soft palate. My son had the palatal myoclonus before he had ear pain. Several years after palatal myoclonus and ear pain, the throat pain began. It was a progression of inconceivable nerve pain with no explanation that came from any doctors. Through prayer and research I learned about glossopharyngeal neuralgia from another patient with palatal myoclonus via social media. Thank you, God, for Facebook, and the internet.
*And recently, another patient with the exact same symptoms as my son visited a surgeon regarding microvascular decompression surgery for his nerve pain. That surgeon noted that the glossopharyngeal nerve affects the palate. This confirmed my beliefs based on my own research.
Continue to read on the next tab, Eagle Syndrome
Links to other sites:
- Link to the Glossopharyngeal Neuralgia NIH site with the caveat that for some people, including my son, the pain was constant but did vary in intensity from "extremely painful" to "I want to die painful" as opposed to the comment in this link that suggests that the pain is only fleeting lasting no more than a few minutes. This is just not true in all cases. Sometimes, first hand experience trumps the online research paper.
- Link to Glossopharyngeal Neuralgia that also mentions the connection to Eagle syndrome or the elongation of the styloid processes. This site also makes reference to vessel compression as a cause and offers microvascular decompression (or MVD) as a solution. We did inquire about MVD with a neurosurgeon.
- Link to Trigeminal Neuralgia NIH Fact Sheet
- Link to "Striking Back! The Trigeminal Neuralgia Handbook" by George Weigel and Kenneth F. Casey, M.D. with a Foreword by Peter J. Jannetta, M.D. found on Barnes and Noble or on Amazon.
- Facial Pain Association
- National Organization for Rare Disorders (NORD)
- Trigeminal Neuralgia Association
- Trigeminal Neuralgia Association Inc
- TNnME
- The Facial Pain Research Foundation