Living with glosssapheral neuralgia

I’m a 56 year old female suffering from neuralgia. First came on at the age of 38. I’ve had Gramma knifes surgery which did not help. Then 3 year ago in July of 2014 I had the surgery where thery made an incision on the left side behind the ear . They put that sponge to keep the blood vessels from pressing down on the nerves., that was a failure. I’m still living with this horrible burning pain in my ear and throat. I’ve been on that drugs neuriontin. Still not helpful. I need help please. Anyone out there been through all this.

Have you ever tried nortriptyline or amitriptyline?

Hi! i have a similar failure with procedures and drugs. did you try Tegretol up to 400 mg a day with baclofen 30 mg when you will be staying in bed due to pain? this helps me with laying still. getting enough sleep and magnesium and B vitamibs too. watch heavy chewing. Don’t both if you have been recently in an attack. Go soft and drink fiber mixed in drinks.

do you wrap your head from breezes, air conditioning vents and overhead fans? Do you hold your bad side firmly while you brush your teeth softly?
Comfort the pain with a soft folded pillow case pressed firmly on your nose fold, cheek, eye brow, upper nose? try ice packs wrapped in dish towels and rice or barley bags heat for 1 minute in microwave. some people use Oralgel for jaw/teeth pain.

Have you tried Topomax? Lyrica both with Tegretol?

you need a neurologist who knows TN and works with you like avpartner to play with neuro drug combinations. mine is terrific, Mark Stillman, MD at the Cleveland Clinic. there are goid docs in Oregon at the University and in San Fran and LA and in Georgia and Fkorida. buy if you are not near any of these states, go to tge American Academy of Neurokigy and look for thought leaders ib TN or MS in your area. in Europe, Britain does the most studies and treatment. the Cleveland Clinic has clinics in Jordan and Dubai. israel also has great neurokigists and in Sydney there us a TN center.

living elsewhere, explore a chronic pain clinic at a large teaching hospital. they will discuss if you are a candidate for a narcotic, med marijuna, etc under their supervision but not so strong you cannot function or work.

i hope you find remission. best wishes.

I had gamma knife to the back of the head and to the cheek area I’ve also had the brain surgery I’ve had three or four different types of injections in the right side of my face I’ve had stents put into my face none which I did have removed none of that has worked I have been on 4 types of medication one it what you are on the others are Tegretol lyrical and I can’t remember the other one just recently I tried to her three other ones all of them have side effects that I could not take me and some of them just didn’t work I have been now on OxyContin and oxycodone for many years and the OxyContin is giving me some other problems so I am slowly going off a bit and just using oxycodone for breakthrough pain and I’m hoping that works but I’m like you I’ve tried many different things and I’ve had this since 2009 I do keep listening to see if there’s anything new to try and with the brain surgery I did lose my hearing which causes another problem for me but we’ve got to keep going and realize there are people worse than we are out there and just keep your ears open to try new things and maybe one of them would work for us good luck in whatever you try and I hope you can find something that will relieve the pain at least a little bit like I have pain always but it’s out of two which is tolerable

Hi I have had neuralgia for the last 4 years ( not long compared to most ) . I an 62 and a registered nurse. My neuralgia has been diagnosed as GPN by a neurologist in Hobart Tasmania 3 months ago. I am on Tegretol 300mg twice a day and lyrica 150mg twice a day. These have helped my pain quite a .ot, particularly the shock pains but I still have constant tooth pain and severe pain when eating, drinking and talking. I need to decrease this pain as being a nurse you are constantly talking and I would love to get back to work.
Best luck to all of you in finding relief from this painful condition

I found tegretal and oxycodone together were the best for me. Also I have the burning pain in my mouth and eat jello, frozen yougart. I don’t know if it really helps the pain but it gives me comfort. When I have a bad episode I go to bed, don’t answer phone and sometimes read to take my mind off the pain. I used to try to work off the pain but I quit feeling guilty about how “lazy” I was just to go to bed. My doctor told me to do whatever I needed to do to help me get through the pain. You cannot worry about what people think even your family when you have chronic pain I am having problems with getting choked or strangled easily. The doctor can find nothing wrong in my thrat. I was wondering if anyone else had this problem? .

Judith, I just have to tell you what I found for myself. After a root canal, I was prescribed oxycodone, and it did provide me some pain relief from constant ATN. But after a period of time I started getting a lot of “burning strips” on the pallet and at the back of my throat. It was very uncomfortable, especially as it was worse at night and kept me awake.

I started using a topical clonazepam solution for the burning (swabbing it on and swishing through my mouth) and this was quite helpful. But still a pain in the neck to keep chasing each new area.

Eventually I figured out that it was the oxycodone that was making things much worse. After I quite using opiods, it only took a few days and the burning pain left completely. Unfortunately I still have a pretty much constant tooth ache, but it subsides at night.

Hi there! It’s very important to get the correct diagnosis before trying different drugs and surgeries. I was diagnosed with glossopharyngeal neuralgia 2 or 3 years after symptoms began. It was only 15 years later that this diagnosis was confirmed – and that was during surgery. Nothing showed up on MRIs, etc. I was on the maximum dosages of carbamazepine for 7 years until I had a dangerous allergic reaction. Then for 5 more years I was on maximum dosages of neurontin, lyrics, and cymbalta. I couldn’t think, I was so medicated, and I still had “attacks.” I too had gamma knife that did not work. Finally, I went to MassGeneral in Boston and had a craniotomy with rhizotomy, where the 9th cranial nerve was cut and the 10th cranial nerve was “trimmed.” Was off morphine and on Tylenol on second day in hospital. Symptom free for a year and a half. Off all medications! Can live a life that isn’t dictated by pain or no pain. You asked for help from fellow sufferers. This is my story, and I hope it does help you. If you have TMJ, my experience will probably not help you. Get a second opinion from a qualified neurologist who has seen one or two of these. GPN is rare. I wish you well.

Thank you for your input. I have been off all meds for several month. I started having so many problems with my ear and throat that doctor could not diagnosis. I saw where someone posted they had symptoms like mind. I looked up Glossopharyneal neuralgia. this bacially same ATN except affects nineth cranial nerve. The same meds are recommended. Has any one else had this happen. I hope I do not have to go through all the cranial nerves. Although when I had my MVD at Duke, the diagnosis was cranial defect.

Yes, so awful ,cabamazapine really worked but at the dose necessary I was so dizzy I had to stop taking it.Now I occasionally use an opioid when the pain is unbearable.I tried neurontin woke up with my face swollen like a pumpkin.

I have the problem with choking now that diagnosis is EOE.A rare disease that causes white blood cells to accumulate in the throat.Pretty miserable.

I can’t help thinking that med marijuana will work in some cases!? My doctor who prescribed these drugs talked about here,actually suggested to me to take the med marijuana.

Hi pwil,

Yes. I feel your pain and perhaps this might help along with the input of others here. I too have GPN. I have suffered for almost 10 years I think…I have lost count. I’m 44. I had a failed MVD in 2014. I have tried loads of drugs, including many, many years on morphine and the like. Had to withdraw from all of those in hospital on ketamine. The only thing that has every really worked for me, which I’ve been on for nearly 2 years, is Clonazepam/Paxam. I also found Epilim to be very helpful, but it made my hair fall out in clumps. Clonazepam/Paxam has been life saving. No more periodic conversations about suicide, but I would obviously dearly still like a cure. Am considering a more aggressive surgery in the future. I am so sorry. It’s horrific. Sending support. x

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