Multiple cranial neuralgias

I am curious to know how many of us deal with pain in more then one cranial nerve. Mine started in V3 of the Trigeminal nerve a decade ago. Then it spread to V2 and then V1 and then went bilateral. Next came symptoms of Glossopharyngeal neuralgia and my newest addition is flare ups of the Occipital nerve.
My pain comes and goes and moves around. I typically will get a flare up and it will last anywhere from a few days to a couple of weeks but I have had specific areas flare up for months at a time.
My neurologist isn’t saying much in the way of why or how. At this point we are focusing on relief and a further referral to yet another specialist.
Along with my head problems I am now dealing with pain and nerve problems elsewhere on my body. I am diagnosed with Myofascial Pain Syndrome and with Fibromyalgia by one Dr even though my current Dr doesn’t even think it is a valid disease. My mom has MS. I have had it ruled out for the third time now. TN also runs in my family as I am the fourth with it. It is all incredibly confusing and Drs are not of much help to be honest.
Anyways, obviously I am a complicated lady but am curious to talk with others that share my problems.

I have been diagnosed with typical TN but for a while, when I was first on meds, I was getting stabs behind both eyes. Dr didn’t want to re–diagnose me based on that, so we focus on relief. I think that’s what most doctors do. But lupus runs in my family and I have some serious skin issues I’ve been dealing with (sun “allergy” etc.) so I will be having my Dr. screen me for lupus at my next checkup.

It’s ahrd because Drs don’t really seem to “work together” – they just refer. Neurologists try to relieve symptoms and primary care physicians refer people out.

If my pain keeps going the way it is, WITH meds, I will be asking my Dr to refer me to a pain specialist.

It sucks but focusing on pain relief is what will help you have the best life possible.

You know your pain is real so I hope you can find a more sympathetic doctor who “believes” in it. You deserve the best care possible but fighting for it can be exhausting! But don’t suffer b/c somebody thinks your disease doesn’t exist!!

I have it in all three on my left side then have it around my eye and I get little shoots of pain down the jaw on the right side. On my left side the pain will go behind my ear and into the back of my head. My dad has MS but doesn’t have TN with it. I am the first to have it in my family. My doc doesn’t know if it’s because of family history or from oral surgery. I have sharp pain the shoots through my face all day long. Then a general aches. My pain specialist went right for numbing the nerves. My neurologist said to never let anyone stick a needle into that nerve or else I would lose function of my jaw. Not sure what to do. Thinking of getting a second opinion from another neurologist.

Hi justjane37.
I am 57, was diagnosed with TN by dentist, many years ago. Never had much input from my GP. I now think, after much research that I have had Geniculate Neuralgia for over a year. GP, taken no notice of the excruciating pain I am in. I’m in the UK. I also, have Fibro about 20 years and they tend to say all symptoms are due to that, it’s a fighting battle!! I’m on Lyrica for the Fibro. Not helping with the nerve pain. I have many other health problems. constant migraines. slipped discs. sciatica and I am bipolar. So, on a lot of meds, including morphine. Some of your symptoms could be the fibro?? But it’s often very hard to know which are and which are due to something else!! I think it’s crucial to try and get pain relief that works. But that’s also a battle. Sometimes, it’s very difficult to convey how much pain you are in. Or feel, as if you are being taken seriously!!
Much, good luck to you

i have the v1 v2 v3 on both sides it can be rough just hang in their and were hear for u

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I have pain in V2 and V3 and when bad v1 jumps in. The shock can fly from one to their get. However, my neurologist thinks I am hurt most at V3. Do not agree.

Just Jane:

I am so sorry to hear of your multiple neuralgias. I don’t know if you are aware the Pain Research Foundation of the TNA-Facial Pain Association is presently in a study trying to determine the genetic factors that may be in play with TN and other neuralgias. With your history and familial profile I am sure they would be very excited to talk with you and get a blood sample. The program is being run by Dr. Kim Burchiel at Oregon Health and Science in Portland, Or. You can contact him through the TNA and it’s Pain Research Foundation. Dr. Burchiel is working on this in connection with two other specialists, one in, I believe, Canada and the other in Israel. This study originated because multiple autopsies over the years has shown that many people had compressions on the trigeminal nerve but never had neuralgia associated with them. I have TN (fortunately now in remission), have had one MVD and lots of drugs and I am also the Support Group Leader for TN and FP in the Sacramento, Ca general area. While I am not currently having any pain I emphasize with anyone that has to suffer from this terrible affliction. You could do all of us a great service by contacting the TNA-FPA and becoming part of this study. By the way, Fibromyalgia is definitely a real diagnosis and shouldn’t be taken lightly by your physician. See a Rheumatologist as they know what it is all about.

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Hi Melissa K

Having multiple issues is very frustrating and I haven’t achieved much except to be passed around from doctor to doctor. I agree that we have to be our own best advocates but that it exhausting right? To keep pushing for help, answers, tests and treatments.
I also have other neurological and immunity diseases and disorders in my family. Nothing seems straight forward and getting a proper diagnosis is very difficult.


Hi Engleberry,
It seems that a lot of us having complicated family histories. I know that only 5% of people that have MS also have TN. I think there is connection when you have a family history of these things.
I am also apprehensive to do nerve blocks or botox has been suggested for my Occipital Neuralgia and neck pain. It is probably a good idea to get a second opinion and don’t do anything you don’t feel comfortable with.


Jean Marie,

I have had flare ups in all three branches at one time or another. They can all hurt like heck. The eye pain (do you get that?) is a breed of its own torture though. It is amazing how much pain we deal with and can learn to function with.


Allan Enis,

Yes I participated in their study through the University of Toronto with Zeev Seltzer, he is the Canadian that you mentioned. The research that they are doing is of great interest to me because I have a family history of TN and other neurological disorders. The fact that so much of the population have compressions and no pain just floors me. I think it says a lot about why MVD surgery has such low success rates. Compression is part of the puzzle but definitely not all of it.
I also participated in a genetics study through Yale University that is under way right now. They are looking into the genetic predisposition in families that have TN. DNA kits were sent to me, my sister, my mom, my aunt and my brother. My mom and my aunt have also had TN or facial pain it runs through the maternal side of my family.
We have to be our own advocates and I think it is our duty to participate in studies so that we can help better treatments and hopefully find some answers about this monster.


Just recently had a series of Mri’s my doctors just told me i have v1 v2 v3 on both sides of my face