Trigeminal Neuropathy
Posted , 17 users are following.
So I have Trigeminal Neuropathy and not Neuralgia. Does anyone else have the same?
2 likes, 38 replies
Posted , 17 users are following.
So I have Trigeminal Neuropathy and not Neuralgia. Does anyone else have the same?
2 likes, 38 replies
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johanna21 lhicks10
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s83681 lhicks10
Posted
johanna21 s83681
Posted
Hi, an MRI who look for several things including signs of MS and compressed vessels that may be pressing on a vessel causing these symptoms we yoi are having. Don't be scared of the MRI this is painless and will show very accurate results which may be helpful in managing your symptoms as I know first hand how awful they are.
s83681 johanna21
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johanna21 s83681
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patyrod johanna21
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johanna21 patyrod
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Best of luck with your surgery.
My prev MRI 7m ago was negative, i need to have these annually due to the past & now presenting symptoms, this latest occurnace has been the worst and although TN very obvious, the L sided loss of balance and co-ordination has raised further concerns re MS...hoping this is not the case and something compressing a nerve vessel, had a ct scan this week which showed an enlarged R optic nerve.. the ct ruled out stroke and any type of tumour which was a huge relief.
s83681 johanna21
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jan55253 s83681
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Do not be afraid of an MRI. If you are claustrophobic, request an "open MRI" which allows you to see out on the sides a little. It helps a lot. Also, they can give you medication to sort of tranquilizebyou during the procedure so you can relax. An MRI is kind of noisy, but there is no pain. Make sure you are working with a neurologist who treats TN. That is pretty essential.
margaret52603 s83681
Posted
You should definitely have an MR and if unsatisfied with your doctor's diagnoses go to another one. The MR should show up if your T G nerve has the damage typical of MS - it may not be that at all. DOn't panic, get more tests done and please see good doctors until you get a diagnosis that fits most of your symptoms. This is a relatively rare condition and not all doctors are up to date with it, so many people get incorrect diagnoses at first. Don't give up.
Jitterbugss s83681
Posted
Hi there, i know you posted this over a year ago so you're probably much further on but just incase, some of your symptoms struck a chord with me. I was diagnosed with tmjd after having a couple of procedures done then I also developed TN, although not 100% whether it's neuralgia or neuropathy, but id say neuropathy. Anyway I developed a knot type thing on my jaw muscles. I too clench and unclench uncontrollably. Turns out that i have something called Myofascial pain and dysfunction and that's what causes the knots, the clenching and very possibly the nerve pain. Many people have never heard of it so i thought it was worth mentioning. If you are still struggling then it's worth looking up but I hope that your symptoms have eased
ibrahim57343 lhicks10
Posted
Hi lawrencia
I also have trigeminal neuropathy
Its not intense its on my left but sometimes it moves over to my right ,
I get throbbing pain on my tempel , i can feel my nerves getting warm and tingling moveing around
Not intense but it feels very uncomfortable feels numb , i also get headaches and metalic taste in my mouth ,
Mine satrted admfter a injury on my left tempel irritating the nerve , thats why its not nuraliga ,
How did yours start has any medication helped all iam 30 and iam scared that this is going to Stay with me all my life , my doc told me becouse it happend from a accident and pinched the nerve there is s high chance it would recover but could take 3 years hope mines is on of them cases 🙏
Hope you are feeling better please any advice and help i would love to hear from you or anyone
margaret52603 ibrahim57343
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Hi! Don't worry too much - if your pain is really bearable then you may prefer to put up with it, since most normal painkillers don't work on TN; however if it really disturbs you then go to a neurologist to get a prescription for an up-to-date and appropriate medication. The ones that people on this list are prescribed, and that the internet says are most appropriate for these conditions, are all very powerful and you should definitely get your consultant's advice and prescriptions before taking them. I found that mine made me feel terrible for hours after taking even a low dosage, but after a week or so the nasty side effects got better and lasted for less time, and in my case it was worth it because eventually it blocked all pain. However you have to take these medications with great care and follow the doctor's instructions to the letter. Also when you start you should not plan on driving because of the strong likelihood of severe dizziness and lack of proper balance or ability to go on in a straight line. This gets better I find, unless you are on a very heavy dosage. This is why I said you need to work out if your pain is bearable or not. If it becomes too much to cope with then you can ask about these medications. I heard that T Neuropathy tends to disappear on its own but that no one knows if it takes months or years to go. Sorry about the lack of specific info and I really hope yours goes soon.
ibrahim57343 lhicks10
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dona40912 lhicks10
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I have Trigeminal Neuropathy. It started as a tooth ache 1 year 8 months ago. 4 months visiting different dentists, root fillings and lost one molar.
No idea why or how I got it. Life has been really difficult ever since. I have tried everything, but nothing helps. Medicines, MVD, acupuncture, botox, facial massage,
psychologist.