| Author | Message | ||
     Wolfridgerider |
Just got diagnosed with trigeminal neuralgia. I am not a happy camper to say the least. The best way I can describe this is the right side of my head feels like going to explode... no joke This all started with a filling that went bad. Had the filling replaced... that filling went south. Had a root canal.... the root canal did not fix the problem Had oral surgery that revealed a good bit of infection in my upper gum. Took a bunch of antibiotics and all should be well.... that didn't happen. Pain like you can not believe still... Went back to my primary dentist and told him I wanted the tooth pulled. He sent me to a specialist and the tooth was gone. I waited for it to heal... and waited... 6 weeks went by, but the pain was still there. I went back to the specialist and they took a panoramic x-ray that revealed nothing. That's when I heard the term Trigeminal Neuralgia for the first time. Made a appointment with my primary care physician and he suspects/confirmed the same thing. Anybody else here dealing with this? If so, what has helped you? I'm getting about 2 hours of sleep then wake up and have to eat some acetaminophen or goodies and wait for them to kick in. I tried sleeping in a chair last night thinking that keeping my head up would help. (it did a little) I saw my Doctor on Friday and he gave me a script for Gabapentin. He told me to come back in 6 weeks. I can't wait that long. I'm going back tomorrow. I hope no one here is dealing with this... I wouldn't wish this on Keith Waddell | ||
| Oldog |
hang in Mark, sorry to hear this, keep us posted | ||
| Reepicheep |
Tooth pain is the worst... really sorry to hear that. So was the tooth thing a false symptom? Or a root cause? | ||
| Strokizator |
I looked it up on Wiki and Dude, that is some serious stuff you're dealing with. I hope they got to it early and it responds to treatment. Good luck. | ||
| Wolfridgerider |
I "think" that the infection from the tooth got into the nerve. I am HOPING that in time it will heal. I also considering myself very lucky. After reading up on this, I have a mild case. I can't imagine it being worse but from what I have read... it could be a LOT worse. | ||
| 86129squids |
What Strok said... man, so sorry to hear about this, buddy. I did a quick scan of the article, quick and early treatment seems to help slow/prevent the nerves from "wiring" themselves for more pain. I've a friend who's probably the best maxillofacial surgeon around, when I see him again I'll ask him about it. Keep us posted up as to how you're doing. Prayers up, mofo mojo heading your way. | ||
| Wolfridgerider |
I am VERY thankful that my helmet doesn't cause me to much anguish. ....it all comes back to "Riding"  | ||
| Reindog |
I had similar symptoms in the nineties after a tooth pull but I never knew there was a name for it. My right side of my face was in agony for about six weeks. No one could explain it. X-rays showed extremely small shards of metal where the tooth had been and it was probably fillings. A D&C was performed on the gum where the tooth had been. The pain disappeared in two hours! The relief due to sudden absence of prolonged pain was better than sex. It came back a few days later and a second D&C was performed. The pain went away permanently. That was 22 years ago. Good luck because I did feel your pain. | ||
| Fltwistygirl |
Wolfie- I had similar symptoms a couple of different times, one incident put me out of commission for several weeks after it affected a nerve. Chasing down a diagnosis was nearly impossible, but I researched, asked around, and eventually went to a doctor who was willing and able to help me out. One of my bouts stemmed from dental work. The more recent was an abscessed tooth that evolved into a sinus infection and required a root canal and two different types of antibiotics to knock out the infection. The GP I saw for it was happy to take my money but worthless and mis-diagnosed it. Thank goodness the second antibiotic that I got from my endodontist worked. I was doing about the same, a couple of hours of sleep a night. That pain made childbirth feel like a trip to Disney. Hope you get it sorted out and consider going to a different doctor if you feel your doctor is not doing enough. | ||
| Reindog |
fltwistgirl is correct. Don't trust doctors on this one. I was shuttled between doctors, eye specialists, emergency room doctors, dentists and oral surgeons. None knew what they were doing. One doctor said I would go blind within 72 hours. One doctor said I should see a psychiatrist. Trust me, the pain was very real. In the end, no one really knew what the problem was but it went away with the second dental scraping where my tooth had been removed. Good luck. | ||
| Etennuly |
Wow. I wish you well with a recovery. Just when I thought it sucked to be me!  | ||
| Wolfridgerider |
today has not been a bad day compared to the last few. I'm hoping the Gabapentin the doc gave me is starting to kick in. Hey Vern, this is the reason I'm hesitant on that ride Friday. I will see how tonight goes and what the doc has to say tomorrow and I will let ya know. | ||
| Ratbuell |
I feel for you Mark - lord knows, I know some pain. Don't you dare ride if you're that compromised. The potential for things to get MUCH worse is very real, if you're in that much pain (and hence, extremely distracted). And dealing with Vern certainly won't make things any better either...   | ||
| Brumbear |
Feel better man | ||
| Thumper74 |
If riding to WV is an issue, we can swing south and pick you up. I'm riding, but dad is doing the support car thing. I can't thank you enough | ||
| Mcelhaney14 |
Wolf, my father delt with this several years ago. Took forever for the doctors to figure out what was wrong. Every test always came back just fine with no explanation. Finally someone pinned it to trigeminal neuralgia. The hospital said it was very rare and there were quite a few people that came in to study it. They ended up trying to do an operation where they wrap the damaged nerve with some sort of material to prevent it from shorting out, but in my fathers case they were unsuccessful as his brain started to swell during surgery. They ended up going in and basically killing the nerve and numbing part of his face. I hope your case is not as bad as his was. Some docs said the pain was worse then child birth. Best wishes | ||
| Rick_a |
Not quite, but I had something similar happen. For about two months I was having migraines that rendered me about useless. I then became feverish and had constant hot and cold flashes. Finally, one morning I could not move and literally crawled out of bed. My neck was inflamed and stiff, feeling like I had a hot poker against it. Fearing the worst, the hospital did a CT scan. Turns out it was a salivary gland infection that had been advanced due to my stubbornness. The lymph node was infected and grossly inflamed. It literally ran completely down my neck. I got the "you got lucky" spiel and given antibiotics and pain killers (which I never used). The antibiotics worked fairly quickly and I was back to normal within a couple weeks. All that was due to keeping tooth pics in my mouth briefly. Never again. My insurance had lapsed at the time and that half day hospital visit had a hefty price tag. | ||
| Wolfridgerider |
Just had blood taken and a CT scan. I hope I hear something soon.... | ||
| Etennuly |
I hope they're careful, with all the fun you have had, there isn't much more room for brain damage!  Gotta be careful re-routing those facial and brain nerves. They did that to a Great Uncle of mine back in the fifties for an accident he had. Two years after the surgery, every time he smiled he shit his pants!  They found out after he died during the autopsy that the Dr put the nerve in backwards.....he was supposed to smile afterhe pooped!  | ||
| Thumper74 |
I wonder how many people read this on a smart phone while pooping... | ||
| Oldog |
Darnit Vern I almost spit on my screen! | ||
| Wolfridgerider |
CT scan shows something... cyst or something growing on my grape. Going to see the Doc on Thursday. I was hoping I would be able to get some sleep at the WV Buell Rally. I drank my share of beer and clear stuff in a mason jar. But I would still wake up every 2 hours or so. this is quite the suck fest | ||
| 86129squids |
Grape or noodle? (I've had nut pain that affected my face and brain, but...) Mark, do keep us posted. Good on ya for soldiering on and hosting the WV rally, which I'm still sad about missing... Sitting here with a badly sprained left ankle, which is a mosquito bite compared to what you're dealing with. Good news is that the docs have discovered something new towards your prognosis and treatment. | ||
| Slowride |
Mark, This is probably going to sound completely off, but I highly recommend you see a very good chiropractor specializing in Gonstead studies. ( http://gonstead.com/). I know of two people (a woman and a man) both treated by a Gonstead Chiropractor for trigeminal neuralgia. They both received relief within the day they were seen. The woman did as you and sought medical treatment for almost a week. She was given pain meds and neural blockers. She absolutely was ready to give in and I mean end her life due to the pain. She was driven to a Gonstead Chiropractor after being telling her sister she was done... She has been relieved of her pain and is doing well today. I just thought I would relay her experience... | ||
| Wolfridgerider |
This is the closest pic I could find on the web of what my CT scan looked like. I'm headed to the ENT Doctor tomorrow to find out how we can get rid of my new little friends. I have two of those little bastard growing in there and I will be happy when they are GONE!  | ||
| Oldog |
Just Daym...... Keep us posted. | ||
| Wolfridgerider |
ENT Doc says that is not the problem. He told me that he could do a CT scan on 100 people and over 50 of them would have the same type of polyps. woo hoo.... back to square one | ||
| Geforce |
I have occipital neuralgia after an IED blast injury from Afghanistan in 2006. I can tell you that while our area of influence is a bit different neuralgia in any case is debilitating and painful. I have to get shots in the base of my skull every few months or the headaches progressively get worse and worse until my vision diminishes and then I have to be hospitalized. I wish you the best of luck with this. I was offered surgery and electro-therapy... I turned the surgery down after heavy research due to the high failure rate and risk involved with further nerve damage. Electro-therapy is fairly intense but can help to stimulate the nerves to fire properly and begin to retrain themselves (in layman's terms because I cannot remember the other medical terms associated with nerve synapses firing). If it is any consolation - over time, the damaged nerves may eventually repair themselves but this take a lot of time. | ||
| Wolfridgerider |
Gabapentin + Amitriptyline + Hydrocodone = | ||
| 86129squids |
Do tell, Mark- doing any better? In the meantime, here's what I had cued up on my cassette (!) for my ride home after a trip to the oral surgeon and a liquid Quaalude drip- (this vid has the bonus addition of the White Duke!) |
