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I have trigeminal neuralgia

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I have trigeminal neuralgia

Postby shna » Mon Feb 29, 2016 12:14 am

Not sure if this is the right forum but anyway.

I was diagnosed and I'm only in my 20's. Even though I know It's treatable to some extent, I'm terrified to have this for the rest of my life. Attacks are terrible and medication only helps for a short period of time. How do people manage?
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Re: I have trigeminal neuralgia

Postby TwilightVanguard » Sat Mar 26, 2016 1:29 am

I was curious about your condition so I searched on the internet. There seems to be various kinds of treatment available, from a couple different medications to surgery.

If your medication isn't helping you enough, you should definitely go and see a doctor and ask for an alternative, perhaps even go the surgery route since from what I've read so far, it seems to be an effective long-term solution.

Don't be afraid to ask around either. If your doctor isn't offering you treatment that you are satisfied with, you can easily ask for another opinion.

I hope you find the relief you seek. Living in any kind of intense pain for so long is torturous.
Overcome with despair and hopelessness...
Cineri gloria sera est
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Re: I have trigeminal neuralgia

Postby unicornslie » Thu Jul 07, 2016 7:46 am

I have a mouth piece, actually two pieces, that will keep me from being able to clamp my teeth together which adds additional pressure onto your inflamed trigeminal nerve. It's called an NTI device, you get it from a dentist, but insurance won't cover it. You can get physical therapy (very painful) as well as two different kinds of nerve block type injections that may help. Mine feel like rods coming down from behind my jaw. They hurt to the skin touch. No amount of pain medication or any other medication really helps. I've just gotten used to the constant pain.
Dx: Bipolar II, GAD, social anxiety, OCD, migraines, severe small fiber neuropathy, chronic severe pain and fatigue, sjogren's syndrome, arthritis, OSA, fibromyalgia
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Re: I have trigeminal neuralgia

Postby RCCola115 » Sat Oct 29, 2016 11:19 pm

I have trigeminal neuralgia too. I was diagnosed in 2007.

What you should know is prolonged exposire to pain causes psychotic episodes if left untreated. Such as in my case because I stopped taking my medications on a daily basis a long time ago and in severe cases this is a side effect.

Just pray for as many remissions as possible and make sure you surround yourself with a loving caring moral and emotional support group because you should never face it alone.
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