Hi Everyone, I'm Jenny and like everyone I had 2 teeth taken out that didn't need to came
out. I first got a terrible earache,burning all down my face and jaw and aching teeth.My Dr put me on antibiotics and sent me to the dentist. That's when it all started.That was 6months ago,I have had pain 24/7 most of the time. My meds are Lyrica150mg twice a day, Oxycontin 15mg twice a day
Cymbal ta 60 mg once a day, Panadine Forte 4 times a day,
Nurafen Plus 4 times a day. I have accupature once now and I do get relief with it .l
l have seen a neurologist in Brisbane,not much use. My Dr is more help to me.
The last 4 days have been unbearable constant pain!!!
I live near Warwick.in south east QLD. Many Thanks Jenny
Hi Jenny,
I am so sorry that you are in horrible pain.
It’s great to have a supportive family doctor but personally I think it is imperative to find a neurologist that has had experience in dealing with TN.
Hopefully someone that lives in Brisbane can recommend a specialist that they have found helpful. If you get a name it may be worth getting your doctor to ring and see if they can fit you in ASAP.
Are the pain killers helping at all?
Keep in mind if you are in unbearable pain you can always go to hospital.
Sorry I couldn’t be of more help.
Sending you a healing hug
Trish
Thinking of you Jenny you must see a neurologist are you taking vitamin b6 you need at least1000mcg a day you can try face cream it can help start with ice a menthol cream can get supermarket you put on as soon as pain starts to crank then every hour avoid eyes see if helps if any relief there is a stronger form join TNA they will send you info on all sorts of stuff but must see a neurologist. For support try and read chronic intractable pain by tenant Forrest it is on this website or google he is a specialist GP in U S
There is a therapy that has helped me but I have atypical triginal neuralgia and there is not much research it is called torque release therapy some chiropractors do it I would not have conventional chiro treatment but torque helps as works on nervous system it is not a cure but helps pain good luck it is difficult when pain put of control
Hi Jenny, really sorry to read you circumstances. For what it's worth I had one ( needless ) extraction.... I live with continual pain & nausea, TN type 2, or ATN. I don't get 'attacks ' of pain as TN people get, just continual moderate pain & nausea. This may be your situation. Been like it for years ... quality of life very low, but I keep watching / reading /looking for cures, or pain relief. From what I'm seeing ( and consultations with 3 neurlogists ) there's nothing they can recommend. As has been said you need a scan to see as far as possible if your trigeminal nerve is compromised or under pressure etc. ( Mine looks nice and healthy, damn thing!)
Living with ATN is a continual challenge, challenge meaning problem.... how do you cope? Tell me if you find out!! All ther best, Craig.
You live three hours away from me. But I am in NSW. Went on March 2nd to rugby union carnival there. It was flooding. My two sons hadnt played rugby together in six years. Fifteen minute halves. Both off in first ten mins injured. The oldest dislocated his elbow. Great memories of Warwick:)) We go through there to first our son . Lives an hour out of Goondiwindi. Sorry for the spelling. I am a nanny and we go visit once a month.
I go to neurologist as South Port. Plus pain specialist at Pindara Hospital also at Southport. Pain specialist tried ten times to freeze the nerve but didn't work. Think its about eight years now since I had jaw surgery. Plate broke and he assumed Jaw was fine. Three months later he took broken plate out and realised my jaw was still broken. Had teeth out etc before my dentist told me his opinion.
Surgeon wouldn't say what was happening to me. Blamed me because I never complained on pain so he thought jaw was fixed. But thats life.
I have Type II also. So amazing Craig because I am also suffer from nausea. Wasn't sure if from TN. Nice to know that it affects you also like that. I have it in all three branches of the nerve. When in the eye it gives me nausea and migraine. Hence can't work. But lately I feel sick in the tummy.Can food sometimes taste off?
Wish I could help Jenny. Best thing is information and what helps relieve your pain. Neurologist last month said to find things that keep your mind off it. Also to go for a walk in the morning to build up endorphins. Too cold
I agree with the VIT B6 i got from this idea for this site and use.
Find Pain Specialist in your region and one that understands you and what the pain is like
Neurologist who is caring. MRI to rule out anything else and also compressed blood flow.
Also this site is wonderful. People are caring and know what you are going through. Its real and not in your mind. Only people who suffer can really know the depth of this pain.
Find something that can distract you. I have my photography. It has helped me so much. I don't want to think about the pain all the time. Only when I can't get off the bed. My doctor said I qualify for invalid pension but we own a farm. But I live photographing little babies:) Free cuddles
If you like to talk on phone sometime said me a message with your phone number. Can also text.
Hi Chris, the nausea is definately part of the ATN for me. I find it can effect taste a bit, and I find I look for strong tasting foods too whet my appetite. In the evenings around dinner tiem I have to think up something that excites my taste buds else it'd be easy not to eat. ( Well there's an element of truth in that, I like to eat ...) So I'll go for a curry, worcestercshire sauce on meat, spiced mexican food.... any thing to get me anticipating food. And having said that, I am careful to eat lots of vegetables , you know, a balanced diet. Trying to give my long sufferring body the best chance.
Endorphins - I've been running for years..... I think I'm acclimatised to the endorphins generated. Everyone talks about the benefits of starting exercise, but no one has studied the benefit of regular exercise say 5 years on . I'm sure it's there, however what I find is that I am addicted to the morning run. Well my body is. It is easier for me to run than NOT to run. I feel quite out of sorts if I don't, and I only not run once in the past 12 months. THis doesn't mean running is easy for me, it's not. It's always an effort, particularly when you feel as sick as I usually do. But this is what I do. And having acheived that, it doesn't matter what I do or don't do for the rest of the day. Cheers, Craig.
Hi Jenny, how are you going? With all those pills you'd fairly rattle! I'm now on Cymbalta 60 mg daily. It seems to help say one point on the pain scale, just enough to move me out of total hopelessness. Acupuncture - is that still working? I read it can offer temporary relief. Oxycontin - be aware dose tolerance can develop ( plus you're taking other drugs with codeine ) . I use it for relief as seldom as possible, say 2-3 times per week, usually on week ends. And then it's as small a dose as I can get away with. ( 5mg plus a little endone later in day ). Enough not eliminate the pain, but reduce it and to change my attitude to something more positive. I tried oxycontin for long term pain relief- ended up after 10 months on 20mg x 4 day. The side effects were undermining me, so I stopped.
You do get sick of trying various drug regimes - using your poor body as a science experiment. Craig.
Hi Craig I find the accaputure helps , the Dr now leaves the needles in for about 3weeks at a time special ones for the face .Its hard trying to find a combination that works with meds.I find Cymbalta works well with the other meds. Yeah I do rattle a times.!!!
Having a few days in a row of constant pain is unfortunately normal. When it hits me it usually takes 5 - 7 days before relaxing again.
I take 400mg Tegretol and 150mg Lyrica combination per day. I also take vitamin D and Calcium tablets daily.
I find the pain gets out of control when I am not well, stressed or upset so I try to be relaxed as possible, but I am a teacher and that is not always possible :) The tiredness gets me down. I get days where I feel I can just not be bothered, I want to stay in bed and not move from there, but once I get to work it helps me to take my mind off it. The students know of my illness and knows that I might just suddenly grip my face and come out in tears. I warn my classes at the start of the year because I do not want them to have a fright and be upset. I find that they are very helpful and caring.
If I am lucky, the attack may only last 10 minutes, but other times, 12 hours straight, maybe 3 hours rest, to start again. Afterwards the utmost tiredness!
Know that you are not alone in this. Saying that, I really hope you are over the worst now and able to rest. Riana
Hi Craig. I am like you, living with continual pain and nausea, TN type 2 (right side of face) but do get "break throughs" of the pain. Those may last for up to 12 hours of continuous pain that grips me and presses and presses and suddenly goes, then after 2 seconds the same. This continues for 12 hours! After that I am very tired, lightheaded and disorientated with that horrible nausea. Other times it is the itching, even my tongue and inside my ears and throat and the burning of my skin. Most of the time though it is just the continual bearable pain and nausea..
At the moment I am going through something new and I wonder if anyone else has experienced this. About two months ago I woke up with a terrible sore jaw. It was painful to move! After about 2 days, pain was gone. Came back 3 weeks ago, left but left me with the most horrible toothache (left side of face). I went to dentist, she checked but said nothing wrong. Told my doctor today that toothache is unbearable. He is referring me back to dentist with R TMJ - underbite.
Please advise if any one else had this reaction before. Riana
Craig said:
Hi Jenny, really sorry to read you circumstances. For what it's worth I had one ( needless ) extraction.... I live with continual pain & nausea, TN type 2, or ATN. I don't get 'attacks ' of pain as TN people get, just continual moderate pain & nausea. This may be your situation. Been like it for years ... quality of life very low, but I keep watching / reading /looking for cures, or pain relief. From what I'm seeing ( and consultations with 3 neurlogists ) there's nothing they can recommend. As has been said you need a scan to see as far as possible if your trigeminal nerve is compromised or under pressure etc. ( Mine looks nice and healthy, damn thing!)
Living with ATN is a continual challenge, challenge meaning problem.... how do you cope? Tell me if you find out!! All ther best, Craig.
Hi Jenny - mine also started out with extreme pain in the ear. I have never had an ear infection before so I assumed that was what an ear infection must feel like (a very painful one though!). When it moved onto other areas of the face I realised it was not an ear infection.
I find heat makes it worse - do you find that? Just wondering since you started the post in April when its hot outside.