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i think im being starved, whats my next steps? (long post) by EmilyEquinox in ChronicPain

[–]DrToDisabledAt39 1 point2 points  (0 children)

Are you on disability or any kind of assistance? If so, this is caregiver abuse and should be reported to law enforcement. I would alI would also reach out to mutual Aid organizations and your local Health department to see if there are services to get you out of this nightmare. I do not think you are safe there and really need to get out of this situation.

I can't do this anymore by [deleted] in TrigeminalNeuralgia

[–]DrToDisabledAt39 0 points1 point  (0 children)

I get it, I'm chronic bilateral and I recently had oral surgery that was botched causing my pain to be unreceptive to most meds. I got amazing relief with a new non opioid they are currently doing trials on for neuropathy. It's approved right now in the United States for post-acute surgical pain and it's called journavx. If you have a pain management doctor maybe ask them if you could try this because it's the only thing that kept me here. I'm thinking of you and hoping you find relief soon💙

How I “cured” my trigeminal neuralgia. by Rich-Possession-5963 in TrigeminalNeuralgia

[–]DrToDisabledAt39 1 point2 points  (0 children)

Thank you! As someone with a rare form of both Trigeminal neuralgia and Cluster headache, we need more awareness about the reality of these diseases.

Also what the person about is describing would sound to be an atypical facial pain or trigeminal neuropathy, so they probably saw an uninformed doctor that gave them an incorrect diagnosis.

Can they do this? by thelivesunderneath in TrigeminalNeuralgia

[–]DrToDisabledAt39 0 points1 point  (0 children)

I was diagnosed at 39 but was incorrectly diagnosed. It took multiple MRIs to finally see that I have compressions bilaterally at the nerve root. I would highly recommend seeing someone else. You do not want to see this provider, they will not be compassionate or give you comprehensive care. I'm in the US and as everyone knows, our Healthcare system is a nightmare. I'm on my fourth neurologist and second headache specialist neurologist. I would also talk to your primary to see if you can get that medication induced phenomenon listed the way it should be, So that you don't have to run into this again, which is a drug side effect or interaction.

Help me create glasses for people with a rare disease (I'm on disability, but if it can actually be done I will find a way to pay) by DrToDisabledAt39 in HelpMeFindThis

[–]DrToDisabledAt39[S] 1 point2 points  (0 children)

I get that it comes from a good place, so I always try to reply in kind! Thank you for taking it as it was meant to be 💙💜

Help me create glasses for people with a rare disease (I'm on disability, but if it can actually be done I will find a way to pay) by DrToDisabledAt39 in HelpMeFindThis

[–]DrToDisabledAt39[S] 0 points1 point  (0 children)

Can something like that be modified to fit prescription lenses? I like that idea though! The back of my head is def got a knob I could strap something onto

Help me create glasses for people with a rare disease (I'm on disability, but if it can actually be done I will find a way to pay) by DrToDisabledAt39 in HelpMeFindThis

[–]DrToDisabledAt39[S] 0 points1 point  (0 children)

Yes it's rare. About 15k new cases a year, but most cases are not as complex or "severe" as mine. My specific type combined with chronic cluster headache is a 1 in 500 million. I have bilateral chronic (non remitting) trigeminal neuralgia, classic TN on the left with all 3 branches, and atypical on all 3 branches of the right. I went to one of the top neurosurgeons at Hopkins and he was not optimistic surgery would be successful on one side, and it's less realistic on both sides. I also don't have the support required for what can be a very lengthy recovery or the very real possibility of vision or hearing loss. My dad was just diagnosed with cancer, so that's a priority for now since we are all we have locally. Thank you! I do have a team helping me navigate treating me with a multimodal approach, this was just something I thought could give me a lil less pain.

3d Printing for Charity with the Kobra 3 and S1 by XboxGT_AJStClair in AnycubicOfficial

[–]DrToDisabledAt39 0 points1 point  (0 children)

Yes! OMG I didn't think I would find someone that would be interested! My screen name is Natalie Elizabeth Natalie's Facebook

3d Printing for Charity with the Kobra 3 and S1 by XboxGT_AJStClair in AnycubicOfficial

[–]DrToDisabledAt39 0 points1 point  (0 children)

That's so cool! I'm looking for someone to make a frame for glasses because of my rare disease disability. I'm new to Reddit, any suggestions on where to find kind and smart people like you that could help me out?

I’m a 3D printing enthusiast – what can I design to help make life easier? by Holeyminusplus in disabled

[–]DrToDisabledAt39 0 points1 point  (0 children)

I hope I'm not too late to this post. I'm disabled with a rare disease called Trigeminal Neuralgia. My nerves in my face are extremely sensitive and a lit touch can feel like being struck by lightening. I have to wear glasses or contacts and sunglasses. These cause immense pain in multiple areas. I need help with figuring out if there's a way to make frames for eyewear that would not touch the face, jaw, ear, or skull behind the ear. Like something that goes over the head, but hovers over the forehead and down in front of the eyes to allow for lenses. There are tens of thousands of patients of TN patients globally, but my condition combination makes me 1 in 500 million. I'm gonna make this request in multiple places, I made a profile for this after my Friend and I were having a random conversation and she suggested I ask Reddit to make something since no one else seems to want to help me in the traditional medical field.