New Diagnosis of TN rambling on, what to do now? suggest meds?

I am probably like most took many many years to get diagnosed, spider bite, tooth, sunburn, sinus problems. A root canal, a tooth pulled, endoscopic sinus surgey....nope nothing worked. Oh it must be herpes on nerve endings(valtrex all doses to no avail, last month even had a derma do a biopsy, no herepes present) I had TN symptoms first (didn't know what it was at the time) My opthamologist diagnosed my PTC & got me right into a Neuro, I recognized when my SF was high I would have TN symptoms or was it the TN causing a flare up with my PTC? I tried to talk to the Neuro since it seemed to be connected, but to no avail kept telling me to see an ENT. I finally went to a Neuro closer to my work & finally someone besides my MD & my retired ENT(thought it was herpes virus on nerve endings) listens. I was on Diamox for my PTC, but caused Kidney stones (every month & 1/2), my insurance won't cover a cranial shunt until I try a Lumbar shunt, still undecided there. I am currently on Hydrochlorathiazide for my PTC less frequency with Kidney Stones, but didn't eliminate. My last MRI (1st one with the new Neuro) he said is Normal, no change in my Pineal Cyst...stop the presses what is a Pineal Cyst I had not idea I even had one, he informs me it is not a tumor & is very small, but I now believe this was the cause of my PTC in the first place. I have a very stressful job & that seems to play into my flare ups, does stress seem to be linked to symptoms?

TN was originally just the ear, then progressed into the jaw & face, I'm really scared as my last flare up (not sure if due to wind or teeth cleaning or stress?) I started having lightening flashes on right side & hurt to eat.

I noticed when my job is stressful I clinch my teeth at night, this can't help, any advice?

Neuro finally says I believe in addition to PTC you have TN casually (Lyrica) is the first med to reduce swelling in face/jaw, but side effects make my PTC worse. Gabapentin (PMD) didn't seem to work increased dose (side effects sleeping all the time & extreme vertigo), what is next please help

More to come

This is a copy & paste from a letter I wrote to someone very helpful on the site, I wanted to share, because until today I didn't find anyone with symptoms similar as mine (mostly because of the ear swelling). I want some of these key words to be put in a discussion should someone else stumble upon this site & need answers or feel like they are alone or don't quite fit the normal diagnosis of TN. I would like to go deeper into my journey & progression. The beginning of my pain started deep in my ear like an ice pick, sometimes external swelling would also be present, and hyperacussis (just learned this term I always said supersonic I will follow up with some photo examples. numerous diagnosis, spider bite, sunburn, earrings. Upon visiting the dentist a root canal was done (later extracted). I was sent to an ENT, who after doing a saliva text (making sure there wasn't a tumor or clogged), felt that the timing (stress sun or wind exposure) linked it to herpes on nerve ending in the ear. He later retired Different variations of meds for many years, I just believed that this was the case as my flare ups increased over time (cautious to keep my ear protected from the sun). I realized over time that wind played a big roll in my flare ups, as did vibrations (motorcycle, race cars) even sound seems to cause pain. I did not have the classic rash as with shingles, my ear would swell & behind my ear almost glandular (not all the time) & sometimes develop a lesion but not sure if this was due to the dermis stretching to extreme. ENT did perform a endoscopic sinus surgery removing some polups. When I have/had a flare up the fluid in ear is clear (whether or not the drum may be bulging). Countless rounds of antibiotics & steroids. fast forward constant headache light sensitivity, went to opthamologist & he looked at my optic nerve & said you need to see a Neuro. Intro to PTC, first action, MRI then Topirimate asked me to loose I think it was 12% bodyweight (biological brother skinny as a rail same issue, ended up with ONSF leaving him almost blind . Upon completion of weight loss with no change in symptom agreed to do a Lumbar Puncture (high opening pressure while I was on Topirimate), CSF testing did not show any disease such as Lyme etc. Ear issue still lingering, asked the Neuro & was continually recommended to see ENT. In the 10 years of pain & specialist an ear infection was never found. Topiramate turned me into a zombie, example driving home from work & drove off the side of road, realized & came back onto highway (normally this would sort of scare you awake if you had feel asleep), did not phase me, the fact that it didn't phase me scared me. Entro to diamox, first kidney stone...then another, Urologist found it rare as I didn't have the classic causes for stones in women. 24 hour urine test & stone removal didn't indicate diet ( they told me from day one cranberry juice is not your friend, taking Uricit-K to help break down any stones & flowmax. After about the 3rd time to the fast track clinic @ the Urologist, dr said it is almost impossible for your body to create these stones so quickly, after ct scan an apology was received. If you have ever had a kidney stone you know the flank pain/symptoms there isn't a "maybe". Several other ENT visits, no your hearing is good, no infection, can't help you. First day to new Neuro near my office...yippee he had seen a connection with some patients of Diamox & kidney stones, switch to Hydochlorathiazide (never say never but frequency of kidney stones reduced tremendously). Discussed ear & connection & he says yes PTC can have many effects on nerves etc., quite probable there is a link. BY this point my pain not only chronic but progressive as it has also extended into jaw (swelling & tender to touch constant in jaw about 1/2 way across my face). Gives me hope that it is not likely to cross over to the other side of face. After more visits he believes I have TN, another brain MRI without contrast shows no change, mentions pineal cyst ( I was wondering if the PTC was due to my body producing more CSF to go around the cyst?). Pain in face/jaw increasing tried Lyrica 50MG 3 X a day, can't believe it in 2 weeks the swelling in jaw goes down, pain decreases. then hands, feet face swelling brain pressure through the roof. Stop taking Lyrica, try Cymbalta (seems to have no effect), try Gabapentin 100mg 3 X a day does not seem to help with pain or swelling (extreme lythargic almost narcoleptic & vertigo even while lying down), back to Lyrica 25MG 3 times a day does not bring down swelling but I am hopeful, while on Lyrica & big Flare up came on just after a dental cleaning before Christmas (was out in the wind) ear swollen face swollen full on attack! happened to have an appointment with a dermatologist who said what the heck do you have going on here (a friend of my primary) so I tell the story & he says well let's do a biopsy of the ear, gives lidocain/steroid shot to decrease pain & swelling as well as numb the area. Results concluded no cancer no herpes, no bacteria (not cauliflower ear), says if it happens again they could do a punch biopsy, but it remains a mystery. Swelling & pain did not go down...2 weeks later back to my Neuro, says stay on Lyrica 25MG & adds amitriptyline once at night. Now swelling is so bad shoes will not fit, brain pressure extreme vision impaired. I am sure there is a multitude of grammatical errors as I am a dislexic typer, but vision is poor today. I told Neuro about lightening strike on my right side (only a few in a week's time) & he said side effect of Lyrica. While I work full time I am struggling to be in attendance. I have baclofen & flexeril for my back (although I only take flexeril at night as it knocks me out). I have Diazepam for flying, so will discuss with my primary. He has been there from the beginning of all this & truly cares about my well being. When the Neuro asked me how many days a month would I say I am incapacitated & I asnswered he said "this is acceptable" while I am ever grateful that he listened about my ear & decided what initially was facial neuropathy concluded TN, although now I would tend to think GN mor especific, he does not seem concerned with solving the problem. When I asked him was there anything that showed on the MRI he said no. He doesn't know the "before" me, so I struggle with showing my frustration in front of him, for fear of him labeling me a "problem" glass is 1/2 full hypochoindriac. Maybe my primary could call him? He has many certifications board acredited etc, but he just doesn't seem agressive as far as helping me. Should I consider seeing a Otologist/Neurotologist? My insurance doesn't require me to have a referral to see a specialist, but I don't want to Dr. hop would rather my primary or my Neuro suggest. I am now on Amitryptiline10mg swelling has gone down & reintroduced taking Gabapentin300mg only taking these meds at night so I can function during the day. I will take photos of entire face when a flare up is in full force as swelling in jaw all the way to mouth is evident, but thought ear swelling was least common, while there is not any infection in the ear or inside the outer ear.

Hi @Cinndd - thanks for posting all of this – did you ever have any swelling above your eyes? Thank you, Joanie