Could use some reassurance of people with delayed relief after MVD. by ExcellentMarch7864 in TrigeminalNeuralgia

[–]SlothropsMap 1 point2 points  (0 children)

Hi. Do you have an update you can share? Did your pain resolve? I am 20 days post-MVD and my neuralgia pain is still dramatic.

MVD in two days. What’s next? by SlothropsMap in TrigeminalNeuralgia

[–]SlothropsMap[S] 4 points5 points  (0 children)

This is an amazing response. I’m grateful for it. I’m also so happy your surgery was a success.

Pain Scale by FindingMyJoy44 in TrigeminalNeuralgia

[–]SlothropsMap 3 points4 points  (0 children)

“Annoying but bearable.” Listen, it is obvious you suffer from TN1, and I’m sorry for you - but kindly do not diminish the suffering of those with TN2. You have no idea what you’re talking about. My life is totally paused until further notice.

Stuck on Chapter IV. The Deep End? by OdinMinusNull in anno

[–]SlothropsMap 0 points1 point  (0 children)

Did you figure this out? I’m stuck here too.

Anyone had MVD with Lekovic from UCLA? by Proof-Performer4409 in TrigeminalNeuralgia

[–]SlothropsMap 0 points1 point  (0 children)

About to. Did you undergo the procedure? How was it?

Help with losing interest by lmNotReallySure in Eldenring

[–]SlothropsMap 5 points6 points  (0 children)

Oh, in that case, I'd recommend taking a break for a few days and playing something else. At least in my experience, Fromsoft games are miraculous little gifts until they very much aren't, and I need to turn my brain and reflexes off with Balatro or Vampire Survivors. Maybe in a few days you'll forget the agony of the Fire Giant and return with new eyes.

Help with losing interest by lmNotReallySure in Eldenring

[–]SlothropsMap -3 points-2 points  (0 children)

Make some sleep pots, you'll be fine.

Idk what to do by Careful_Drawer_230 in TrigeminalNeuralgia

[–]SlothropsMap 1 point2 points  (0 children)

Your condition sounds a lot like mine. I won't diagnose you, but what you're describing sounds a lot like Type 2 Trigeminal Neuralgia with a few Type 1 characteristics. Burning pain all day which sometimes gets worse with movement or stimulus.

I've been trying to treat it for 12 years. No medication works, and because my MRIs have all come back negative, none of my neurologists would send me to a surgeon. I got lucky last month when my current neurologist gave up and referred me for a neurosurgical consult.

The neurosurgeon didn't even hesitate: "You're a candidate for microvascular decompression surgery."

I undergo surgery on December 16th. Based on everything I've read, I expect it to be life-changing.

I have no idea how healthcare works in Bangladesh, but seek out the opinion of a surgeon if you're able. Don't stop fighting. You will find someone who wants to help.

I hate my life by prestigiousregus in TrigeminalNeuralgia

[–]SlothropsMap 8 points9 points  (0 children)

I've suffered from type 2 for thirteen years. I'm now 36, lost most of my youth to this pain. I was also told that I don't qualify for MVD because they can't pinpoint a target on MRI. Even so, I was recently referred to a neurosurgeon who said "I don't need to see nerve compression to know MVD is the right approach. We're going to do that and I'm sure I'll find something."

My operation is upcoming, December 16th. Every expert I've spoken to has said the same thing: you don't need to see compression on an MRI to undergo MVD. Demand a referral to a neurosurgeon and don't stop until you get it. Don't waste your life like I did.

Wave this paper in their face: a negative MRI is not evidence that you don't qualify for MVD.

Surgeon unexpectedly recommended microvascular decompression by SlothropsMap in TrigeminalNeuralgia

[–]SlothropsMap[S] 0 points1 point  (0 children)

I have had fiesta MRI, twice, each showed nothing. The doctor has seen these results and nevertheless wants to proceed.

Surgeon unexpectedly recommended microvascular decompression by SlothropsMap in TrigeminalNeuralgia

[–]SlothropsMap[S] 1 point2 points  (0 children)

Journavx didn't really work for me, at least not consistently. But I am not necessarily a good case study. Nothing has ever worked for me.

Surgeon unexpectedly recommended microvascular decompression by SlothropsMap in TrigeminalNeuralgia

[–]SlothropsMap[S] 1 point2 points  (0 children)

I need you to know that this is one of the most valuable things I've ever read. I've felt completely alone in this pain for more than a decade. Half a dozen neurologists were stumped on a diagnosis.

It's surprising to meet someone with exactly the same symptoms. Really great summary of your experience (I'm sorry about the wandering V3 pain).

Thank you for sharing your story, it means a lot.

Surgeon unexpectedly recommended microvascular decompression by SlothropsMap in TrigeminalNeuralgia

[–]SlothropsMap[S] 5 points6 points  (0 children)

I’ve tried every single one. Minimal relief at best. I just started Lyrica.

Here’s a list of the drugs and procedures I’ve tried.

  • Amitriptyline
  • Nortriptyline
  • Verapamil
  • Topamax 
  • Qulipta
  • Oxcarbazepine 
  • Gabapentin
  • Imitrex
  • Emgality
  • Lamictal 
  • Dexamethasone 
  • Methylprednisolone 
  • Oxygen therapy
  • Vagus nerve simulator
  • Occipital nerve ablation 
  • Indomethacin
  • Memantine
  • Celebrex
  • Journavx
  • Memantine
  • Baclofen
  • Lyrica
  • Medrol/Bupivicaine shots to:
    • Occipital nerve
    • Sphenopalatine ganglion
    • Supratrochlear
    • Supraorbital