i have trigeminal neuralgia? (a new diagnosis)

I have Trigeminal Neuralgia?   (I am Ron Burgundy?)

Here is a REALLY long update about what’s been going on with my health and I’m going to explain the new diagnosis I’ve been given.

((note: this blog post was originally published on 24.feb.2011 – since that date, i’ve eventually had trigeminal neuralgia ruled out, although i am having neuro issues that do involve the trigeminal nerve.  just to clarify, thanks!  -30.nov.2011))

Yup, you heard me correctly – I have a new diagnosis.  As in, I have a  new medical condition to claim on my pre-existing conditions.  For those of you keeping track, you may now add Trigeminal Neuralgia to the list.  Hodgkin’s Lymphoma (remission for 6 years), Melanoma (remission for 2.5 years),  Crohn’s disease, Porphyria, Hypothyroidism (related to radiation), ADHD, and Extreme Awesomeness should already be on your list.

(If you’re listing surgeries: right inguinal hernia repair, pelvic lysis of adhesions, appendectomy, bowel resection and during cancer they took out a lymph node, harvested eggs, and put a port-a-cath in and out).

What is Trigeminal Neuralgia? How did this happen?  Wtf is going on?  I know there are lots of questions to answer.  Lemme start at the beginning here.

Backstory

So I have porphyria, this rare blood disease that runs in my family, right?  Well, for the past four years I’ve been learning more about it, learning to better identify porphyria exacerbations (“attacks”) and learn my symptoms.    I’ve had several attacks, and sadly they’ve been happening closer and closer together.  The cool thing about porphyria though is that there are triggers, and I’ve been learning a lot about triggers and avoiding them.  Its a big reason why I don’t really touch the booze these days.  Or Motrin.  (You can learn more about porphyria here: http://en.wikipedia.org/wiki/Porphyria).

For the past two-ish years, I’ve been getting these bizarre ear aches.  And the lymph nodes behind my ear get super inflamed, tender and hard – to the point where doctors have actually thought there were cysts back there.  Or some kind of infection.  (Honestly, we’re still not sure what those bumps are back there, cysts vs. nodes).  Well, porphyria can do weird things and pop up in weird ways, so these ear aches/bumps behind my ear have been loosely associated with my porphyria.  As in, when the porphyria attacks, the bumps behind my ear show up too.  And as the attack fades out and I feel better,  my ear seems to get better too.  Weird, but whatever.

this is from summer 2009, at my dad's in leesburg - i had a terrible ear ache and i'd posted on FB about it. the hat was keeping it warm, and warm seems to always help the pain.

In nursing school I was so stressed out nonstop, my body was going haywire.  Insomnia, anxiety, frequent porphyria attacks, GI troubles, etc.  It was a rough year for me health-wise.  I got out to Hawaii last July, and detoxed.  I got off all of my medication except for my thyroid meds (super vital) and I was feeling great.  I de-stressed.  Worked out, did yoga, laid out at the beach.  My stress level went into the negative and I’ve never felt better.  I quit smoking, quit drinking and cut out caffeine too.  Then I got pregnant, and I felt the best I ever had in my life.  I was loving it!

Then… the miscarriage. Ugh.  Between the physical toll on my body (I bled for 2+ weeks and had some dehydration, low B/P issues) and the emotional stress, I braced myself for a porphyria attack.  And it came.

In order to treat the attack, I finally got hooked up with a hematologist out here.  And well, as what I thought was part of the attack – I got those ear bumps and a super bad ear ache; I wasn’t surprised and just assumed it was porphyria.  To treat the symptoms though, I went to the clinic here on base and saw a primary care doc.  He thought the cysts behind my ear were some kind of weird inflammation issue, so he injected them with steroids.  At the time it seemed super clever and it was a unique approach.  Sadly, it backfired.  It actually made them WAY worse.  That was on January 11th (my mom’s birthday!) that I saw the PCM and had the ‘roids shot up into my head.

So a few days later I ended up in the ER, because like I said, the shots made this junk get way way worse.  They threw some pain meds at me and sent me home with a referral to an ENT – an ear, nose, and throat specialist – in the works.

duggs took me to the ER while he was home on emergency leave - i took this pic while we were playing 20 Questions, and i was making him laugh because I'm so witty and adorable.

The ENT clinic was super booked.  They couldn’t see me for weeks (three weeks later, Feb 8th).  By the time I finally went in, the ear thing was almost all better.  It had kinda gone away on its own, just as my porphyria attack was clearing up and I was feeling a lot better in genral. Just to be sure the ENT did a super thorough work up, including an ultrasound of my ear/neck and sticking a camera up my nose to see my inner ear (super uncomfortable btw, i hated that one).  He told me if it gets bad again to call him and he’d see me right away, at least we had a baseline now.

The ear thing crops up like every 6 months, so I was fairly confident I’d never see him again.  Wrong!

My Ear Hurts, Yo!

I woke up the morning of February 16th and my ear was feeling tender and weird.  By the afternoon, I had those bumps and it was getting more serious.  I called up the ENT the next day, and he told me to come in on Friday afternoon (the 18th).

I took myself down to Tripler (the Army Hospital here with all of the speciality clinics).  I assumed  the doctor would poke around a little bit, tell me some BS like “take it easy” and it would be what it is.   Well, he starts assessing me and nothing is “wrong” with my ear.  I’m hypersensitive to sound on the right side, but anatomically – he can’t find anything wrong inside my ear.  No redness, swelling, oozing, nada.  Trying to figure out wtf is going on, he decided to do a cranial nerve assessment.  I remember that sonnovabitch from nursing school (we had to learn how to test all 12 of them, a total pain in the ass and tricky to remember); so once he started testing my nerves, I knew exactly what he was doing.  The dude is thorough, so I played along and let him do the full assessment.

Here’s where everything gets WEIRD.

I didn’t “pass” the cranial nerve assessment.  As in, I had totally abnormal responses to some of the tests.  He had me close my eyes and he lightly touched my forehead with two cotton swabs – right above each eyebrow.  He asked me, “do you feel a difference?”  I sat there with my eyes closed all confused, “difference in what?”  He explained, “does one side feel different than the other?”  I shift uncomfortably.  “Uhh, I can only feel one side, so yeah I feel a difference.”   Fail.  He was touching both sides, I just couldn’t feel anything on my right side.  Same thing happened with my cheeks.

i found this on google images - he kinda did like this to me, except less aggressive with the mashing of my face. and with a cotton-tipped applicator.

yeah, this is more like it! (i just like adding pics into a post, can you tell? i like to jazz it up. that's why i found these random photos on google images. but they do help illustrate what i'm talking about). .

Next, he did the whole follow-my-finger-with-your-eyes thing.  When I look waaaaay over to the left, all was fine.  I could move my eye balls, follow his finger, etc.  When he had me go way over to the right, it was hard.  I couldn’t hold my gaze, I didn’t have control of my eyes, and it hurt!  (This is actually not cranial nerve V, this is more for the fourth nerve – but the doc feels that because of the serious pain I’m feeling near my right eye, it was hard for me and anything affecting that area is just super sensitive/ouchy/stressful).

to the left = fine. to the right = EEKS!

Cranial Nerve testing: http://www.clinicalexam.com/pda/n_cranial_nerves_exam.htm

I could puff out both of my cheeks, smile, blink, wrinkle my forehead – there were a lot of things I could do just fine.  It was a sensory thing that I was all messed up on.  I couldn’t feel things properly.  And when he did some testing with the tuning fork I was hypersensitive on the right side.

ouch! jeepers!!

He started to ask me questions about this ear pain and where else it hurts.  I was explaining how the ear ache must be really serious because it radiates to other places.  Like my right cheek, jaw, behind my eye.  Just the whole right side of my face in general.  I really was thinking I had something wrong with my inner ear, and that’s why the pain seemed to spread from my ear, out.

He consulted with other doctors in his group, gave me a 10 minute break then re-assessed my cranial nerves, looked inside my ears again, tested my eyes, and had me explain in detail where/how/when it hurts.

My ear itself looked fine.  A CT scan of my head/neck I had just done on that Monday was normal, coupled with recent labs that all came back normal – the doc felt like he could rule out infection, abscesses, or anything really blatant.

He left for a while to go look some stuff up.   Finally, he came back in and gave me his best hypothesis.  He’s pretty sure what I’m experiencing is nerve pain and that I possibly have something called Trigeminal Neuralia (TN).    I sat there kinda freaked out, not even knowing what that meant.

Trigeminal Neuralgia: WTF

The term trigeminal neuralgia sounded familiar though, and I was pretty sure one of my friends has it.  I started texting her, and I’m so glad I did.  She ended up talking me through the rest of the appointment and “being there” with me until I got home.   D, I love you and I’m so thankful for you!!

I was sent home with some pain meds.  Over the weekend I did some online research (of course).  The more I learned about TN and nerve pain, the more sure I became that this was really what was going on with me.  While its not super common to feel TN in the ear, it does happen.   And what I learned about “nerve pain” (as opposed to regular ole pain) just made sense – everything I could read online sounded exactly like what’s been going on with me.

Wednesday, the ENT and I talked over the phone and we both decided it most likely is TN.  The weirdness of touching my ear and having my jaw and teeth hurt so badly, the building and waves of pain, the sharpness of the pain without any pathological origin, and the sensory disturbances (the numbness, the hypersensitivity) are all hallmarks of TN.  Its like all of my wiring is switched up and broken.  Press hard on my gums, and my right eye hurts.  Brush the side of my face near my ear, and it feels like I have a cavity and a migraine.  Resting and taking it easy doesn’t help, and I don’t feel ill at all.  Its not a sick thing, its a weird PAIN thing.

Today I started on a new med: Gabapentin.  Technically, this medication is used to prevent seizure in epileptics.  An off-label use is that it curbs nerve pain.  Basically, if gabapentin can relieve my pain, it can be determined I most likely do have TN.  The only other “test” they can do is an MRI.   There’s nothing indicative of TN that will show up on an MRI though.  As long as I don’t have a tumor, lesions (MS) or something obvious going on inside my noggin and brain, TN can be assumed by process of elimination.  No dental abscess, no brain tumor, no anything else they can find +  the nerve assessment indicative of sensory abnormalities + the way the patient describes the pain = TN diagnosis.

I’m hoping the gabapentin helps me out.  Not because I want this diagnosis to stick, but because I’ve been in so much freaking pain.  I have a wicked high pain tolerance and this has got me all kinds of cranky.  Its pretty serious pain.  The gabapentin is a pretty reliable drug that’s been around for a while.  It does, like all drugs, have some side effects though.  I’m a little nervous about which ones I could have, so I’m a bit nervy right now.  I’m really hoping/praying for the best and staying positive though.

gabapentin, for all my neuropathy needs!

So for those of you already googling TN, you’re going to find some weird stuff.   Its rare, has no cure, and isn’t very well understood.  Yes, it is nicknamed the “suicide disease.”   It earned the nickname because the pain from TN is considered to be so terrible,  its considered the most painful condition one can have.  So painful that people who have it get all suicidal because they’d rather die than live in this much pain.  Scary?  Kinda yeah, thinking I could experience that kind of pain is scary.  BADASS?  Let’s not kid, that is pretty hardcore and badass.

How much pain have I been in?  The waves of pain are pretty serious, I won’t lie.  Once TN gets triggered, it keeps going and going until the nerves calm down.  I left the doctor’s office Friday and over the weekend everything kept building and getting worse.  By Monday, I was about in tears (okay, I was actually in tears).  Its no joke.

I will keep everyone posted about the success of the new med, and what happens from here.  I have a trip to the mainland already scheduled for next week, so I won’t be seeing a neurologist for further assessment until mid-March when I get back out here to Hawaii.

Of course I’m going to be sappy about this

Seriously, don’t cry for me Argentina.  No pity party or feeling bad for me.  If you know me, you know how I roll and that when medical stuff happens to me, I take it in stride.  In general, I have an amazing life without any reason to complain.   The name of this blog is HAPPYhippierose.  I’m a very happy, content, fulfilled person and I feel immeasurably blessed every single day.  (I never go hungry, I have a roof over my head, a warm bed, an amazing husband, family and friends who love and support me… I could go on but at some point its just gloating.  Just the fact that when medical stuff does happen to me I have access to safe, well trained and affordable health care – that’s an epic blessing right there.)

People all around me deal with challenges and trials that I couldn’t imagine going through.  That whole God-only-gives-you-what-you-can-handle thing, cheesy and trite as it is, it feels very true in my life.  If the worst thing I have to deal with in my life is more doctor’s appointments than the average bear, I can handle that!  Well that and deployment, right?

Probably the worst part about this is not having my Matthew home to go through this with me.  I do wish I had Duggs here to take me to appointments, and drive me places when I’m high on pain meds, to hold my hand and comfort me – all the stuff he’s so damn good at.  But let’s not kid, I have awesome friends out here who take care of me and my church family has my back and looks out for me; I know I’m in good hands until my hubs comes home.

I’ll keep y’all posted and update about how the meds are treating me and how I’m feeling.  For now, think happy thoughts for me, send me good healing vibes and keep me in your prayers!

Like I said earlier, there’s no “cure.”  But from what I’ve read (and what my doctor has explained), treatment with medication can be very effective.   This isn’t life threatening, and once its under control it shouldn’t really impact my quality of life much at all.  This is all great news, and very reassuring.

As far as we know now, this is unrelated to any of my other conditions – and thus, I’ve gone from being a medical anomaly with a truly unique case history, to being even more of a medical anomaly with an even more unique case history!  I’m 99.999% sure that no one in the history of the world has ever had a medical history that’s the same as mine.  I really am special, really!

More info about TN (well… if you’re clever enough to get to this blog you can probably google, but here ya go anyways):

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13 responses

  1. That is all so intense and scary, Rose 😦

    I hope you feel better with the new medicine. I am sending piles and piles of good thoughts your way!

  2. Pingback: Part Two on my Health: An Update on my Current Condition, Porphyria | happyhippierose

  3. Hi Rose, I stumbled onto your blog. You are a fighter I can see, and have a great attitude. I hope the lack of posts is not due to illness. I am interested in your results using the Gabapentin for neuro pain as I have HCP Hereditary Coproporphyria and take the amino acid GABA to treat it. It has no side effects and has many other benefits. It is the active ingredient in Gabapentin I think.
    Anyway, I wish you well on your journey.

    • hi matt, thank you so much for finding my blog! having people with porphyria find this blog, reach out, etc – it just means so much to me! until a month or so ago, i’d never even talked to another person with porphyria before!

      so what porphyria symptoms/issues do you have? you can email me: happyhippierose@gmail.com if you’d rather have more privacy than my blog!

      as for gabapentin… it didn’t work out at all for me. i only tried it for maybe a month, maybe six weeks? and then i switched to lyrica, which i’m still on. i take a pretty high dose of lyrica these days, with other meds for breakthrough pain. it’s just been a twisted journey without many results.

      i have been feeling pretty crummy lately. not sure why, but i’ve had a MAJOR spike in pain this past week/ten days… it’s been rough. but i’m working on a new post right now, so that’s fun! thanks for reading!!

  4. Hello Happy Hippie Rose, I am not writing to make you feel less special but I have had an eerily similar story as yours and only came across this as I was searching for info on Porphyria and Trigeminal neuralgia. The only difference is that they figured out the trigeminal neuralgia after a year and took 3 years to figure out the porphyria. These were the worst three years of my life filled with pain and no understanding of what was happening to me. I too was in the military only when they couldn’t figure out what was going on they medically retired me. I hope that you are doing well and am writing going that we could possibly communicate about what works, ect. I only ask as it is very to find anyone else with these problems. Please let me know if you would be open to communicating with me. – Heidi

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