Please read please help

Can someone please help me I’ve been in constant pain for nine months and NOBODY will help me I’m in sooooo much pain. I don’t understand why nobody will help. Neurosurgeon called and said he won’t do gamma knife rhizotomys or nerve blocks. I’ve seen 15 drs!! He sending me to a oral surgeon for possible injections in the mouth but said he can’t guarantee she will. Please I’m begging for help what do I do?? I have no other options I cannot live like this. Nobody understands please help

I don’t know how some of you people have lived with this for years I would kill myself . nine months and I’m about done. Something has to give!!! Please help

I know you have seen a lot of doctors, but if it is at all possible I would suggest you go see Dr. Jeffrey Brown in NY. He is a TN expert, and very dedicated to helping his patients find relief. I live in Georgia, and traveled to him for all four of my surgeries.

Christine was he willing to help for atypical?? What did he offer you for atypical? I know you have the PNS… Is that all he offered for atypical? Please help I really appreciate your support

Christine would you mind giving me your number so I can text you? If not that’s ok. My email is ■■■■■■■■■■■■■■■■ you can give me your number there if you can. Thank you so much or even if you can just communicate with me threw email please

Christine a few different doctors with that name come up. Is he in great neck, NY?

Yes, he is in Great Neck. I will email you.

Jennifer, don't dispair, I too have been in excruciating pain on one side of my face, mainly my gums and my teeth for the past 8 months, I am on medication which helps sometimes and sometimes not, I have had 2 sphenopalatine ganglion block through the nose, it only allieviated my headaches, and now for the past 5 days I have been cooped up in my house not wanting to go anywhere, so I went throught my mother's meds and found this cream called Benzodent "Dentist Pain Relieving Cream", and it worked, finally, relief!!!!! Give it a try and let us know how that worked for you. Take care and remember, you are never alone, we are all in the same boat, and we will find until someone hears us and find a cure for this darn thing called Trigeminal Neuralgia.

God Bless and I hope you have a good and painless weekend.

Jennifer have u tried a tricyclic anti depressant? Even in conjunction with an anti convulsant? Or a compound cream? I had one tooth that hurt for over a year. Amitriptyline helped me a lot. I know that this pain drives u completely insane. I have been there a few times and seen so many drs and specialists and dentists. U r a strong advocate for yourself. Keep pushing! Can I ask how all this started for u? Was it a dental injury or did it just come on by itself?

Just Jane yes I have. What finally made your tooth stop hurting?

It started after I had a permanent bottom retainer on my bottom teeth taken off

It still hurts sometimes. My Tn has changed a lot since it started. I am now bilateral in all three branches. I have many other locations that flare up. They all take turns. And sometimes I have no pain. This week its been the whole left side of my mouth doing some pretty nasty things. It all sucks. I have bad pain free periods…right now is not one of them :frowning:

Have u tried chiro? NUCCA? Accupuncture? Just throwing things out there. I have actually gotten some relief through physio and acupuncture.

Certainly not something that should cause nerve damage. Have you heard of Dr Linskey in California ? I personally wouldn’t rush into anything invasive bc it can make it worse. But there are some brave souls out there that have

Jennifer Muir said:

It started after I had a permanent bottom retainer on my bottom teeth taken off

If you don't want to travel as far as NY, I would suggest contacting Dr. Singh Sahni in Richmond, VA. Here is a link to his website: He is the fellow in the turban. He is also a client at the law firm where I work. I liked him the first time I met him. He truly listens. If you can get here, let me know and I'll try to find you a place to stay through my church.

Well obviously it did everyone is different or maybe its just a coiencidence. and that’s very nice of you Cindy thank you

What I meant was that Tn seems to b triggered by even minor dental work sometimes. I have seen it happen to a lot of people on here. And for those that have a dental connection it seems harder for them to get help and relief.

Jennifer Muir said:

Well obviously it did everyone is different or maybe its just a coiencidence. and that’s very nice of you Cindy thank you

I have heard of good pain relief with the gamma knife procedure and of course, that is something only your neurologist and/or your neurosurgeon can decide with your approval. As far as the injections in the mouth, I would try that at least once before the first option. Did you happen to read about the Sphenopalatine Ganglion nerve block procedure I have had that twice so far and that might work for you. Anyhow, whatever decision you make, I wish you the best of luck and mainly the most relief. God Bless!

Hi Jennifer, I am Ralf (Wheels 4 Legs) I live in Arkansas and had a wonderful (nuro) Dr, Kutz. You will probably find a lot of doctors that want to pass off our kind of pain as dental (yell at them). It is not in our head and it is not in our teeth. Was told twice I needed a route canal. Told the last guy where it was about. Got a referral to Dr. Kutz had a cyber knife and it worked great. No more pain so don't give up and don't let them send you to a dentist. That is not cool!!! Good luck and please don't give up. There is help just tell them what you want. You look young so you may have a little problem getting them to listen but don't give up. Have a friend that has had 5 route canals and still has pain, had the shots and short term help. He finally yelled had a Psr that wasn't to good.

I had one that lasted 8 mounts and then pain came back. Much meds later had cyber: so far very good. Cutting back on meds.. Op was 4 months ago.

Hang in there Jennifer ,We may have different types of pain but it is excruciating. .Ppl who never had this don’t understand ,they can’t. They never felt "suicide disease "So sad for those who don’t believe. .Karma…I’ve felt like packing it in many times ,but try to offer the pain up to God ,for souls in purgatory. .Or ,my many sins …