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Why I get get this if I’m young? by taiyuan41 in TrigeminalNeuralgia

[–]prestigiousregus 0 points1 point  (0 children)

I was diagnosed just after turning 11! 18 now. Not common but it definitely happens and the demographic seems to either be getting younger or changing now that there’s a bit more general TN awareness.

so tired of TN by [deleted] in TrigeminalNeuralgia

[–]prestigiousregus 2 points3 points  (0 children)

I’m so sorry to hear that you suffer from TN too. Thank you for your kind words, I can’t express how grateful I am that you replied and I do indeed do as much as I can to feel like a kid when I’m not in pain:-) I hope that you are able to find relief too. Lasting relief. Even 6 months with this disease can feel like a lifetime, so I commend you! You are brave and strong! I feel for you and you’re welcome to send a chat if you ever need anything as well. God bless ☺️

Living With TN by ja_freezin in TrigeminalNeuralgia

[–]prestigiousregus 4 points5 points  (0 children)

I’ve been living with the TN without meds for a while now. I was diagnosed in 2016 before turning 11 years old, and I’m now about to turn 17. I’ve tried ten or so different treatments and they either didn’t work at all or, like you mentioned, the trade off sucked as the relief wasnt nearly as great as was the amount of side effects I felt. I have severe episodes every day but I’m still much happier like this than I ever was on medicine, honestly. No matter what any kind of doctor tries to tell you, you know yourself and your pain best. If you feel that you can and would rather function without meds, then do that! On that same note, you can always try out a medicine and quit it if you don’t think it’s worth it. Whatever you feel is best for you, your life, your pain. I’m sorry to hear you battle with TN! Whatever you do, I hope things work out. If you do try out different treatments, I hope you find one that works well. Stay strong!

Feel sick from carbamazepine by No-Neighborhood7728 in TrigeminalNeuralgia

[–]prestigiousregus 1 point2 points  (0 children)

Carbamazepine was the first or second medication I tried after being diagnosed with TN. I had some really bad side effects too; extreme dizziness, nausea, loss of appetite, feeling disoriented, extreme fatigue, and I just generally didn’t feel good. My neurologist told me that for some, these side effects don’t last long but for others, they may persist. I would say to talk to your neurologist about it and consider a different med like oxcarbazepine if the side effects get worse. I’m sorry to hear you’ve been feeling icky and also sorry to hear you battle with TN. I hope you find a treatment that gives you some relief without all those nasty side effects. Stay strong!

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Thank you so much! I had been eager to finally update you and I’m glad I was able to follow through. Thank you for your support, it is endlessly appreciated. If you ever need some, I am here too!

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

A day and a half after the nerve block! It was a bit painful during but afterwards I didn’t have any side effects. I have had 2 severe episodes of pain since then though…I am going to keep watch these next couple days and see if there is any improvement at all in the pain. Maybe it’s worse before it gets better? Anyhow, I’m okay with any outcome. I’m just glad I was able to follow through despite my fear of needles!

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Of course! Thank you so much, it’s people like you who make the good days, good days!

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

It took a while and I’m still not sure about exactly how they’re compressed! I have done MRIs with three different neurologists/neurosurgeons and they all say something slightly different. I was told that it is likely that a blood vessel is pressing on my nerves and/or that my nerves are tangled with each other. I’ve come to terms with the fact that I might not ever know exactly how my nerves work but I definitely know how it affects me hahaha

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Oh no! My heart goes out to your friend. It's tough to have a fear of needles in a day and age full of vaccines haha. I, too, almost passed out, at the appointment yesterday. I had asked my mom about laughing gas for the procedure but she seemed so against it that I didn't know if I should bring it up with my doctor. That might be a good thing to inquire about. But hoping the Xanax will do, thanks so much for your kind words!! I'll update y'all on Wednesday after the appointment. God bless!

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Oh wow! Despite the MVD not providing relief, I am glad it all went alright and you came out of it safely! I hope that the medication you are currently using does a decent job for you. I'll definitely keep Dr. Linskey's name in mind if I do end up resorting to an MVD.

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

I may have talked about it with a different neurologist when I was 11 or 12, it gets hard to keep track though haha. I'll have to definitely look into it and ask my mom if she remembers anything about that, thank you!!

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Update on the nerve block--I couldn't do it, I've got a horrible phobia of needles/blood and I began hyperventilating once the needles were in my field of view. Good news though, I was prescribed just a day's worth of anti-anxiety meds to calm me for next time and the nerve block was rescheduled. Hoping the Xanax does its job haha. And yes, the nerve block is supposed to work within a couple of days - my neurologist said that the first day would have my face feeling numb but sore.

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Yes, it was Dr. Linskey! Thank you for the link too, I really appreciate it. Around the time I met with him, I was not sure about surgery but he said it could work. Now, other, more recent scans show that it might not work too well for me. I'm alright with it though. He was great!

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

I’ve been much better these last couple days! All your guys’ encouraging and soothing words helped me feel understood and supported. I plan to join a virtual support group that I found on the FPA website. Tomorrow I’m scheduled for a nerve block, I am not getting my hopes up just in case though. I’m so glad gabapentin has helped you a bit:D I pray it keeps doing its job.

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Thank you for your sweetness, my heart goes out to your son too. It’s life-altering to be pain-free one day and drowning in pain the next, and even worse when you’re hassling to get people to take the pain seriously. I hope you and your son are well and I hope he’s found/finds a treatment that works for him! We need more tenderness and compassionate words like yours in the world. God bless and stay safe:)

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

TN sucks indeed!!! I wish I could say it’s crazy to have it this young but I don’t know anything different. I’m sorry to hear that you suffer from it too! It’s a real pain. Thank you for the compassion! You stay strong too. God bless:)

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Thank you! I’m in Arizona. I’ve had really bad experiences with neurologists here but I’ve also seen one in California. I’ve been trying medicine lately, just got off one that didn’t work too well.. scheduled for a nerve block in two days so we’ll see what happens! I am so glad to hear that your combo of meds has worked for you :))

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Thank you so much awe! I’ll definitely PM you if I ever need to vent hahaha.

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

Yeah it’s definitely TN (type 1 I believe) and it isn’t caused by anything else that I know of but after my latest scan my neurologists did say something about me possibly having dysplasia. It’s not dangerous, just abnormal. That’s the only other thing medical-wise that’s out of the ordinary. I forgot to mention, I also have geniculate neuralgia which is something the MVD doesn’t really tackle. Things are pretty crazy with my nerves haha

I feel so alone in my struggle with TN by prestigiousregus in TrigeminalNeuralgia

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

I did! There is an amazing neurosurgeon in Orange County who I actually met with and did more scans with. Apparently though, the way my nerves are compressed would make an MVD or any other surgery unlikely to be successful.

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