My husband started having shooting pain in his jaw on the 6th. The pain was so much he wanted to go to the hospital. They were great and did a CT scan to rule out an abscess. Though he doesn't have the best teeth we know they are not abscessed. He did 7 days of antibiotics because his lymph nodes (sp?) were swollen. The swelling went away but not the pain. At the hospital they mentioned TN but said it was weird because he was having bilateral pain which apparently doesn't happen with TN according to them. At his follow up doctors appt they put him on Valtrex. He started that 2 days ago and still no signs of improvements. Again at the doctors appt they said it was weird to have bilateral pain, but gave him a diagnosis of TN. Nothing is helping him with the pain. He feels it starting and within a matter of seconds he is in horrible pain. He can not figure out a trigger. This morning it was swollen under his jaw again. He hasn't slept a full night in 2 weeks now. He's up 3 and 4 times a night. What can I do for him? Is there any advice anyone can give. I usually let him just ball up in my lap and rub his head or watch him pace in circles while he holds his face. I'm sure he feels helpless and I do too because I can't help him. Please someone tell me something I can do to help. Thanks!
It is possible to have bilateral tn because i have it But I have Type 2 Your husband sounds like he has type 1 It is truely painful I always would be holding my face. I had a hard time accepting that I didn't have TN it is not a disease you want!! I particularly have more right sided pain then left. I have alot of pain in my teeth and got many unnessarily removed because the dentists weren't informed about this disease. My go to emergency pain relief comes from an ice pack on the right side of my head 20 min on every hr. my tn came with severe headaches that were relentless. ibprofin advil tylonel none of these touched my pain. I urge you to read read the face pain info tab. It is possible to have both types at the same time. If he has type 1 he needs a anti-sezure medication type 2 a tricylic anti depressent works better alot of people on here are on a combo of the two. Maybe you can go to the urgent care tell them about the information you found for tn and get a perscription for one of the medications i mentioned along with pain pills until you can find out and understand all the information. Im sure more people will chime in to help you they are all very nice and are going through the same thing. Tell your husband to hang in there it will get better!!
A lot of Dr’s don’t know about bilateral TN or will not accept it is a fact. However over 100 members here have it. If his meds are not helping he needs to ask to be re evaluated, he may need to swop. Not all meds work for everyone. It can be a testing time finding the medication that works for us.
It really sounds like your husband is having full-blown TN attacks even though the pain is bilateral. Please try to find a doctor who will experiment with the proper meds (anti-convulsants, etc.). He should find a neurologist, but will probably have to wait to see one. Just get an appointment ASAP. Sometimes you can get a referral faster by going through the ER.
One thing I was able to do before I was properly diagnosed was to have a dentist numb me up with a series of shots. The relief is temporary, but when you are in that much pain, you need relief. I can tell you that once I started my meds, the pain was almost completely resolved the next day. I hope your husband finds relief soon, but you will have to be persistant.
brownkat
Hi, I have bilateral TN, but I never feel the pain on both sides at once.
I find a microwaveable heating pad has helped me tremendously to take the edge off the severe pain.
Starting on an anti-convulsant medication is usually the first line of treatment, relief is usually had within 48hrs…and then it can take a few weeks to find the right dose to provide consistent relief. It requires patience and having to deal with some side effects, but usually the side effects lessen and disappear when your body adjusts.
Hope your husband finds relief soon, my husband and kids feel your helplessness too, it’s hard to see your loved one in pain and frustrating when you feel like you can’t help. Definitely look into the heating pad as you wait for meds and specialists…
Thinking of you both, Mimi
Sounds like nico!!! It’s bilateral and presents itself in different ways at first it can drive you nuts!!! Finally learned to suck it up!! On lots of meds helps some very weather related also! Ice helps. Neurontin baclofen clonidine nucynta and demerol
You are doing all you can for him. Has he seen a neurologist and has he been put on anti-convulsant drugs? That may help his pain. That is the only other thing I can tell you to do for him is to get him in to a neurologist.
Valtrex is an antiviral drug - Why the He!! would they put him on that?
If you are in the US -- have your dentist/ gp doctor / ER - get him some Lidocaine patches to put on his face ASAP--they are prescription and work for up to 12 hours for many many people.
It should take the edge off until he can get a real TN med!
Keep Posting!
They said they wanted to rule out all other things first. In the mean time he's miserable!
Thanks everyone.
Kc Dancer Kc said:
Valtrex is an antiviral drug - Why the He!! would they put him on that?
The lidocaine numbs it -- it's not an internal "drug" - you don't have to rule out anything to get great pain relief - you just do that first --- it could take WEEEEEEKs for them to find the right pill. AND then weeks for that pill to work. This is the worst pain known to man - worse than cutting your leg off with a chainsaw - he needs help now.
His Stress signals that his body is putting out makes the pain worse - please inquire about getting some harmless patches for his face. I don't mean to be so blunt -
I've just seen soooo many people here for two years,
wait and wait and wait until the doctor "expert" gets around to doing the right thing - if at all.
There is no reason for him to suffer right now -- there are many other topcical soloutions -- go to the groups tab above - click on it - and find the group for topical relief..... It's like putting calamine lotion on poison ivy - quick fix
Must be proactive -
You should find a doctor that fully understands TN. Get him some relief… Any kind of relief will help him to know they are on the right track.
For me it was Carbamazepine that started to help.
Smash
I'll admit part of the problem with getting him adequate treatment is our inability to pay the insurance deductible. We simply can't afford the $500 dollars right now. He's been out of work for 3 weeks. I've had a serious car accident leaving our one and only car totalled. It has just been one thing after another this month and we are so broke all we can afford is the low income doctor who keeps rescheduling him and treating him like a lower species. He goes back in tomorrow so I will ask them about the patches.
Let us know what happens --- If the patches are too expensive - there is a cream -- it's just not as strong - and you just keep plastering it on!!!!
Peeples said:
I'll admit part of the problem with getting him adequate treatment is our inability to pay the insurance deductible. We simply can't afford the $500 dollars right now. He's been out of work for 3 weeks. I've had a serious car accident leaving our one and only car totalled. It has just been one thing after another this month and we are so broke all we can afford is the low income doctor who keeps rescheduling him and treating him like a lower species. He goes back in tomorrow so I will ask them about the patches.
Peeples- I am so sorry to hear all the struggles that you and your husband are facing. If it comes down to it, go to the ER. They can bill you. You can also call your local social services to see what help is out there for you. Tell them what is going on and they can tell you if they have any services that can help or maybe refer you to another agency that can help.
Praying that your husband finds relief soon.
My husband wanted me to ask you all two questions. Does anyone else experience numbness or tingling in parts of your face? Does anyone get swelling? Part of his lip has been numb and he has swelling that goes away and comes back.
Peebles, both numbness and tingling are common symptoms in facial neuralgia and neuropathy. The tingling is sometimes called “parasthesia”. A properly trained neurologist will recognize it as a symptom of a neurological problem.
Regards
Peeples-Yes, many of us do have numbness and tingling. Mine is usually more intense around my mouth, nose and eye.
I am not sure about the swelling. For me, I have a sense that my face feels "fat" or swollen on the TN side, but there is no noticable difference to others. Your husband really needs to see a neurologist, but make sure that EVERY doctor you see knows that he has swelling...esp around the lips. If he has swelling that is visible, that may indicate a reaction to the meds.
Start writing things down so that when you get in front of a dr, you have all your info there and emotions don't get in the way of getting all the facts out. There is also the issue of time in the dr office...you have dozens of things going on and the dr has many other patients waiting. A list helps get all the facts out there before the dr is out the door.
Praying for you both.
Quote:
Start writing things down so that when you get in front of a dr, you have all your info there and emotions don’t get in the way of getting all the facts out. There is also the issue of time in the dr office…you have dozens of things going on and the dr has many other patients waiting. A list helps get all the facts out there before the dr is out the door.
+1
I could not agree more. This is very valuable advice.
My sincerest sympathies to your husband...TN pain is absolutely horrible.
As other have said, he needs a good dr to prescribe the right meds.....carbamazepine, neurotin..ect
As for immediate relieft...go to the ER and tell them he is in crisis pain. They have to take you and they can just bill you. Tell them up front that it's TN and ask for him to be seen by a neurologist (or ask/demand a referral for one). And as mentioned above, ask for lidocaine patches. Even if you have to be a pain in their behinds...don't leave until he's no longer in pain.
For at home relief in the meantime....try everything. Hot packs, cold packs...ibruprophen (helps some people). Standing still in a very hot shower helped me a lot before i got diagnosed. If the pain is inside his mouth, benzocaine paste..marketed under the names "benzodent" and "Orabase" is good to use. It doesn't last long..but any relief is welcome. I also used to use benadryl capsules to help me sleep...i'm not recommending it, just saying i did it.
The main thing is to educate yourself and then find a Dr to help you.
I'm thinking of you guys and hoping you find some relief soon..
~Mistee
They finally gave him a script for neurotin (sp?) today. They also gave him a new pain medicine. She would not give him a topical or a patch and said he would need to go to the dentist for that. So looks like we are going to the dentist at the first of the week. Thanks everyone for your advice. Can't wait to go pick up his meds in the morning! Hoping they are going to help!