When TN turns into TN plus Multiple Peripheral Neuralgia's

General General TN & GPN (Old Site)
1

Hello Everyone,

I'm trying to gain insight into my situation so that I can better determine how to deal with this. Here is a quick rundown of my story.

Aug 2012 - Developed a sharp pain under my left cheek that turned into a dull, burning pain under and around my cheek. As the days went by, the deep dull, burning pain became worse and worse. The shocks continued. This went on for 3 months before I was finally put on Gabapentin 300/mg 1/daily by my GP. This lowered the pain, but I still feel the after affects, causing daily headaches and facial/nerve muscle pain. I had an MRI that looked "unremarkable". It did show a loop around my Trigeminal Nerve, but it was apparently the same on both sides. Compression could not be verified by the MRI results.

Many months went by as I went from doctor to doctor based on referrals. At this point, I met with a Neurosurgeon who recommended MVD. Even in the beginning, I had my reservations because I did not have triggers, but rather constant pain and that didn't match what I was being told or read. Later, I discovered TN2 and what I'm feeling started making more sense.

July 2013 - I developed burning Peripheral Neuralgia in my left Pudendal Nerve, affecting my seat and groin area. This spread to my Sciatic nerve and burning pain shot down the back of my leg. I started experiencing Paresthesia and Numbness on the front part of my Thigh and Calf. My doctor increased my Gabapentin to 300/mg 3/daily. I started off slow at 2/daily and the pain greatly diminished, but I became unable to think clearly (almost drunk acting) and became horribly depressed to the point of being suicidal. I dropped back down to 1/daily. The headaches and muscle soreness came back, but the dull burning and shocks are very muted.

August 2013 - I started seeing a Neurologist instead of a Neurosurgeon. She had me do a MRI of my spine. It came back perfect. She did a EMG and a Nerve Conduction Study on my leg. She had me scheduled for a follow up to discuss.

Sept 2013 - In the time between the leg tests and the follow up, I started having dull pain in my left shoulder and arm. I started feeling shocks in my hands. The leg EMG and NCS looked perfect. She scheduled 2 pages worth of labs on my blood. She added Lyrica 2/daily to my Gabapentin 1/daily. For the first few weeks, it helped everything greatly, then I started realizing that I had Foggy Brain, blurred vision and depressed again. After 3 weeks, I stopped taking this.

October 2013 - The bloodwork comes back and my A1C is 5.6 on the nose. She doesn't mention this is .1 away from being considered Pre-Diabetes. My hemoglobin was 12.3, just below normal. My Vitamin D is 17. She puts me on 50k IU D2. I'm still taking it with no noticeable difference. Everything else looks good. I take Proton Pump Inhibitors for Gerd, so I attribute the low D to that. I was also on Reglan for more than 10 years. A known Blood Barrier crossing medication that can cause Tardive Kinesis. I do not have muscle ticks in my face, but it feels too close to what I am dealing with for my comfort. I recently stopped the Reglan and switched to a compound only alternative.

I'm still concerned about Autoimmune Disorders as I have had severe allergies and food allergies my whole life. I've had severe chemical allergic reactions and have to keep to non-dye/perfumed products. Chemical Sensitivity, especially smells give me headaches. I have also noticed through wheat restriction eating that when I eat wheat products, I feel terrible. I drink one beer and the next day I feel like I drank a 12 pack. I have not testing for Cealic or Gluten Intolerance.

At this point, I need to do something about the MVD, but I'm concerned that I need to find out what is the overall problem that could or could not be related between my TN and PN. Every day, I keep waiting for the other shoe to drop. All of my symptoms are on the left side.

I really don't know where I need to go with this. I don't feel my Neurologist is thinking outside of the box. Until my arm, she was treating me as if I had a pinched nerve in my leg. Once my arm started being a problem, she added the bloodwork, but she won't consider the notion that my TN and PN could be related.

Any advice or research that could help me figure this out would be greatly appreciated.

Thank You,

Chance

2

My pain started in my side of my ribcage, running up to the armpit and down the back of the arm(tricep) to the pinky and ring finger which went from completely numb to a burning tickle oversensitive pain. Then my face pain started, all on my left side.

Pretty much all 5+ specialists I've been to say there's no relation between the pains. My neuro said something is causing multiple neuralgias but had no insight as to what. He did say if you have shingles or something systemic, it can cause damage to the nerve, then by the time you get the blood test the shingles may be gone but nerve pain remains and there's no apparent cause on the test.

My face pain covers all 3 branches of the trigeminal nerve as well as nerve pain in the back of my throat and down the neck, above the tonsil that runs forward and up behind the sinus and behind the eye.

I had an MVD back in April of this year, which helped for 8 weeks before the pain returned.

In my experience the specialists are so specialized they don't know much about overall syndromes. The ENT came to his own conclusion of Eagles syndrome, the first neurologist came to the diagnosis of "tolosa-hunt syndrome", the 3rd neurologist came to the conclusion TN and referred for MVD, now I've exhausted every option I could and am simply climbing the oxycontin ladder, with no conclusive "diagnosis" other than my face is killing me.

3

Shindig,

Thank you for sharing. I'm a bit humbled by my own experience after reading what you've been going through. Thank you for the feedback.

I did have an outbreak of Shingles about 2 years ago. It was on the right side and everything I've read says that you get Neuralgia from Shingles on the same nerve where the outbreak occurred. I'd love to know if there is some research that says otherwise. I'm considering getting the Shingles Vacination, but I'm not sure if it's going to help me with this.

4

There's a lot of other stuff beyond shingles that can lead to nerve damage sadly. Lyme disease, diabetic neuralgia, sarcoidosis, systemic bacteria/virus, compression, damaged thalamus/post stroke pain, brain and base skull lesions, alcoholism, etc off the top of my head, and a thousand others. I was in perfect health on every blood test and even had a spinal tap after my first MRI, everything was perfect, and I'm in my 20's. Sometimes there's no explanation.

The best bet is to find a good neurologist, there are plenty of bad ones and it's not always clear when they are bad, you just assume they're specialists. But if they're fresh out of school with no real world experience, run. The only indicator I've found on what makes a good one is "Do you feel like your neurologist is pushing your case forward at each visit". Whether it's more tests or more meds, my good neurologist at least pushed things forward checking for damage to the thalamus, trying different meds, referring for MVD, but now he's out of ideas after the MVD, with nothing showing on any tests, and maxed out the drugs that worked best over the last 2 years.

5

I am also suffering from TN 2 and PN. I started to have them at the same time after pelvic laparoscopy. Doctors say I’m crazy it cannot happen. I am also diagnosed with endometriosis. Now I am waiting for bloodwork because I also supposed I could have other autoimmun disorders than endometriosis.