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Old 05-05-2012, 10:52 PM #1
Peaceluvnsil Peaceluvnsil is offline
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Default Anyone suffer from trigeminal neuropathy?

Hi,

I'm here to connect and share with other people affected by trigeminal neuropathy. I'm not actually the one suffering, it's my sister in law but she's not much into support from people she doesn't know so I was hoping to learn something here that I could in turn share with her as she's much more open to advice/encouragement from family rather than strangers.

Two years ago she went in to the dentist for a deep cleaning. They injected her with novocaine and gave her gas since she has such high anxiety about the dentist and the novocaine was because she was getting a deep clean.

The dentist damaged her nerve when giving her the injection and all of our lives have been changed since that day. It's been almost 2 1/2 years and she is still in debilitating pain all day every day. She's been through more meds and combination of meds then I can count, she's seen dentists, endodontists, maxilla facial specialists, neurologists, and has even taken a two week trip out of state to seek treatment at the Mayo clinic. The dentist that did this to her has not only taken her life but the lives of her children and the rest of our family and it's been a long, devestating two and a half years but we don't want to give up. We're hoping that maybe there's been some medical breakthrough we haven't heard about or tried yet.

Again, I'm just here for support, advice, encouragement and to hear your stories. While I'm not the one who is personally dealing with extreme pain each and every day it certainly has affected mine, my husbands, and the rest of our family's life. We look to the future with hope in our hearts. Peace and Love!!
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Old 05-06-2012, 04:41 PM #2
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Welcome! It's nice you are looking for ways to help your sister-in-law. I hadn't heard of Trigeminal Neuropathy before but maybe someone here has. Was this diagnosed by a neurologist? What medicines was she given?
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Old 05-06-2012, 11:11 PM #3
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Quote:
Originally Posted by jjlsongbird View Post
Welcome! It's nice you are looking for ways to help your sister-in-law. I hadn't heard of Trigeminal Neuropathy before but maybe someone here has. Was this diagnosed by a neurologist? What medicines was she given?
Yes. She's been diagnosed by multiple specialists from neurologists to endodontists. She went out of state for two weeks to be treated and diagnosed at Mayo clinic. She has been on SO many meds. They tried seizure medications She has been on a TON with little luck: carbamazepine, Clonozapam, depakote,Diazepam, Lyrica, Oxcarbazepine, topamax and teGrotol... There may have been more but these are the ones I remember. She's also been through many different types of pain meds from Vicodin, norco, oxycodone, dilaudid, morphine,OxyContin, and fentanyl patch.

She made the decision to take herself off the fentanyl patch because she felt too dependent on it and she HATES being on meds. She also cut down her dosage of oxycontin in half for the same reason. She recently went back to the oxycodone because her pain levels have been extremely high and the other meds were offering no relief. Prior to this injury she never so much as took an aspirin and now you'd swear she's on enough to kill a horse. As far as I know she's currently on neurontin a couple times a day, norco for the pain and oxycodone as a break through med. Thats it for pain relief but I think she may be on something for sleep too.

I really hope I can find some new ideas here. Thank you. Peace and love !!
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Old 05-07-2012, 06:59 AM #4
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Has she worked with or seen a psychologist who deals with chronic pain patients? There are alternative ways to dealing with chronic pain that they can help her acquire. Given that she is being seen at Mayo, have they suggested this to her? If not, it would be a good place to start and I would ask their opinion as to what is best. I have done a lot of work on Mindfulness for chronic pain and it has helped me a lot so I throw this out there based on my own experience. I also received this advice from a long time sufferer of TN who also used these tools. They don't get rid of the pain, they just help you understand it and deal with it better. I also take meds for my TN - baclofen, ultram, and klonopin when needed. I do hope you find something that helps her. Take care

ee
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Old 05-07-2012, 08:46 AM #5
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There is another thread (discussion) of this topic at http://neurotalk.psychcentral.com/sh...d.php?t=148286
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Old 03-21-2013, 07:54 PM #6
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Quote:
Originally Posted by jjlsongbird View Post
Welcome! It's nice you are looking for ways to help your sister-in-law. I hadn't heard of Trigeminal Neuropathy before but maybe someone here has. Was this diagnosed by a neurologist? What medicines was she given?
my daughter was diagnosed with trigeminal neuralgia and neuropathy. which i understand is damage to the nerves. she will be having Microvascular Decompression surgery this Tuesday. Scared to death! i am sorry i did not introduce myself, I am Donna. Glad to find this!
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Old 06-03-2013, 10:27 AM #7
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Hi all! Just want to say that I personally understand trigeminal neuropathy and neuralgia. I also understand headaches and Occipital Neuralgia.
After suffering with both on one side for a few decades and TN starting up on the other side recently, I had a left side MVD about 6 months ago. My neuralgia and neuropathy continues to improve. The pain changed from a constant boring burning ache and sharp electric shooting jolts to a low roar. My TN pain levels stay in the 1-7 range with an occasional 0 in the mix. So worth the surgery.
I hope to maybe get a neurostim implant for the remaining bilateral TN pain and my ON. My ON is keeping me down most days. But I can now separate the pain origins with the TN pain nocked back a little. Before it was too confusing and exceptionally debilitating.
Glad you are all here for me to learn from, Therese
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Old 06-05-2013, 05:23 PM #8
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Bless you for trying to help your SIL. I ended up with Atypical Trigeminal Neuralgia after some weird dental work with a young, inexperienced dentist. Things only worsened from there. This is common...Check out a book called "Striking Back," written by a neuro and TN expert which describes these dental cases in detail.

Anyway, a good website to check out is called livingwithtn.org

There isTN 1 or TN 2 or atypical. TN 1 is worse (IMHO) and often requires brain surgery called an MVD. The good thing is that if successful, it can last a very long time or even bring permanent relief. But since it was after dental work (kinda common actually) it is a little more likely to be ATN.

After one of the worst years of my life with extraordinary pain, I am better....NOT cured by any means, but I am more myself.

My medication routine, and I understand this works for others with ATN is as follows:
Desipramine (pills)
Compounded cream applied 4 to 5 times a day containing: Gabapentin, Lidocaine and Capsacian.
I take Percocet as needed for breakthrough pain.

I tried many other meds first, but this has helped me by far the most and I thank God daily.

Keep the faith!
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