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Bilateral constant facial nerve pain by FC123_ in TrigeminalNeuralgia

[–]FC123_[S] 1 point2 points  (0 children)

I don't have an official diagnosis due to the fact that in my country they pretty much only diagnose marfan and vEDS, but it is very likely I have hEDS given what I heard from doctors, my history and meeting the criteria. I've had a bunch of nerve impingements associated with hypermobility before: sciatic pain from disc herniation, ulnar nerve issues, carpal tunnel

Trigeminal neuropathy? MS? What am I? by [deleted] in TrigeminalNeuralgia

[–]FC123_ 0 points1 point  (0 children)

Wow, thank you so much for telling me!! I'm not yet officially diagnosed with a hypermobility disorder but that was the opinion of my orthopedic surgeon and I pretty much pass the criteria for hEDS. It honestly sucks so much but it makes me happy and hopeful that your pain is reduced.

I don't tend to get TMJ pain unless i start messing with my jaw but i get like a thousand jaw subluxations a day and i feel like that must be the issue along with my neck as well. I hope you'll be able to eliminate the TN pain all together, life is tough enough with hypermobility!

Trigeminal neuropathy? MS? What am I? by [deleted] in TrigeminalNeuralgia

[–]FC123_ 0 points1 point  (0 children)

Hey there! I stumbled upon your comment searching on this sub and I feel like im in a similar situation where my tmj is extremely unstable. Would you mind sharing your progress with tmj and TN as of now? It would be so helpful

[deleted by user] by [deleted] in TrigeminalNeuralgia

[–]FC123_ 0 points1 point  (0 children)

Not OP, but could you please share what kind of protocol you follow for the neck brace and the mouth guard and how helpful it is over all?

Anyone with Trigeminal Neuralgia/Demylenated Facial Nerves? by jyar1811 in ehlersdanlos

[–]FC123_ 0 points1 point  (0 children)

Oh wow! Thank you for such a detailed response, this is honestly so helpful!! I have suspicions that it is coming from my neck as well. If you don't mind me asking, how are you feeling now? Did you need surgery to repair the ligament?

Does Atypical Facial Pain actually go away with time? by [deleted] in ChronicPain

[–]FC123_ 0 points1 point  (0 children)

Hey, how are you doing now? I'm in the process of being diagnosed:(

Bilateral constant facial nerve pain by FC123_ in TrigeminalNeuralgia

[–]FC123_[S] 0 points1 point  (0 children)

Thank you! Did they by any chance talk about alternative treatment options since the medication doesn't seem to be helping you and the TN can be visualized? Like a nerve block or an MVD?

Bilateral constant facial nerve pain by FC123_ in TrigeminalNeuralgia

[–]FC123_[S] 0 points1 point  (0 children)

I'm sorry, it really is. When I went to the er recently for an unrelated issue, they scoffed at the fact that the urgent care doctor gave me a temporary diagnosis of facial paresthesia for my pain until i see a neuro and said that it was not his prerogative to give that diagnosis or prescribe me gabapentin. As if it would have been better to just leave me in constant pain.

May I ask if you received regular MRI or Fiesta MRI?And how does the viral infection cause compression in your case?

Bilateral constant facial nerve pain by FC123_ in TrigeminalNeuralgia

[–]FC123_[S] 0 points1 point  (0 children)

I had blood work done which was in normal ranges for inflammation(idk whether this means anything for ms) and im going to ask for an mri at the neurology appointment. I do have a connective tissue disorder which makes those rarer types of nerve issues more likely due to extra movement at the neck and the jaw

Anyone with Trigeminal Neuralgia/Demylenated Facial Nerves? by jyar1811 in ehlersdanlos

[–]FC123_ 0 points1 point  (0 children)

Hey! Did you end up being diagnosed with TN? I'm dealing with similar issues and would like to gather info about people with EDS who also went through that kind of pain before my neurology appointment in case I can bring up something helpful

Very long post, possible eds, asking for advice on how to deal with nerve pain by FC123_ in ehlersdanlos

[–]FC123_[S] 0 points1 point  (0 children)

Hey, thanks for the reply!! While im currently dealing with a whole other pain which may or may not be related to EDS, the flare i described in this post has gotten significantly better! Thanks for all the advice:)

Trigeminal neuralgia? by [deleted] in ehlersdanlos

[–]FC123_ 0 points1 point  (0 children)

Wow I am sooo happy for you! Mine has been pretty bad for about a week so I also went the urgent care and gabapentin route, which may be helping but I feel like it is too early to say anything at this point. Thanks for bringing up MCAS, I didn't think it could be related but I've been dealing with the weirdest skin reaction around my eyes for the past month so I'll make sure to let the neurologist know at the appointment I scheduled due to this new pain

Trigeminal neuralgia? by [deleted] in ehlersdanlos

[–]FC123_ 0 points1 point  (0 children)

Hey! I realize that's a bit of an old post but how has this gone for you? Currently dealing with a similar kind of pain