Does anyone know which of the cranial nerves can be affected by ES? I’m fairly certain I’m experiencing Glossopharyngeal nerve pain, but not sure if there are other nerves that can be affected. Did or does anyone have nerve pain because of ES and if so, have you found any medications that offer some relief?
Suzanne- I have Trigeminal neuralgia, which I presume was caused by the styloid- I take amitriptyline which has helped, and helps me sleep too! The trigeminal nerve is CN5, and has 3 branches going to the lower jaw and teeth; the upper jaw and teeth, and the nose; then the temple, eye and scalp.
The Cranial nerve 7 can also be affected- the facial nerve, and could affect facial expression, salivation/ salivary glands, and also it goes to the External Auditory Canal, so can cause ear pain.
I think CN8 might possibly be affected to- that's the acoustic nerve, and I think might be to do with balance.
CN 10, the vagus nerve is also in the same area, which can affect parasympathetic regulation of the heart and some organs, plus some sensations in the throat, so affecting swallowing.
CN12 is the hypoglossal nerve, and if that was affected it could affect tongue movement.
Other medication for nerve pain which can be helpful is Gabapentin, Lyrica, Tegretol, Neurontin or another antidepressant- Nortriptyline
Thanks so much for your reply Jules! How many mg of amtriptyline do you take and do you need to take it daily?
Wow Jules, that was a great answer.
Also wanted to add that glossopharyngeal neuralgia was my first Eagle's symptom and Baclofen was the only medication that worked for me (for the GN) until I had surgery.
Hiya Suzanne!
I’m still working on untangling which of my nerve pain is cause by my ES and which is my brachial plexus, but I hope I can at least help on some of the medication questions.
There’s a lot of options to try and you do need to give them time to see if they work for you. Nerve medications work exponentially, and build up in the system before they reach a therapeutic threshold where they actually start to Do something. Unfortunately, a lot of them come with a whole lot of side effects that kick in a lot faster. However they are life changing for many people.
Personally the typical nerve medications such as gabapentin/neurotin, Lyrica, Tegretol, etc, didn’t help or made me retain so much water and swell so much that it made my nerve symptoms Worse!
My pain doc is currently experimenting with doses of migraine medications such as Topamax (which “only” gives me constant oral thrush, doesn’t help yet but doesn’t hurt) which can be another route for those who don’t tolerate other nerve meds.
The pain doc also said the lack of success with the medications could indicate an ongoing mechanical irritation (like a sharp bone in your neck) rather than an unhealed nerve lesion.
Suzanne- sorry I missed your question about the medication! I take 20mg Amitriptyline daily. It's not quite so effective now, so might have to up it... It helps you sleep too, which is great as that's something I had trouble with. SnappleofDiscord's answer was great- these sorts of medications can take a while to build up to be effective, and it can be a bit of a juggling act getting the dose and balance right if on more then one. I finished writing up some of the information I'd found, so if you have a look in the ES Information section (on the top menu bar), there's a bit in there about the cranial nerves and medications. One of the Moderators in the Ben's Friends TN site is very knowledgeable on nerve pain; so if you look on either the GPN or TN sites there's a lot of info on there.