Facial Nerve Pain,Dont Know Wear To Go From Here

Two and half years ago I did a lower face lift in Bangkok,thailand and all went very well until about three months after and I got up one morning with bad discomfort in my lower jaw and lower face . This progressively got worse and eventually the pain was so bad I had to go and see my doctor . She recommended that I see a facial surgeon to get his views on weather their might be a problem from the surgery I had done . I booked and saw one of the best surgeons in my area at my own cost for the consultation . He checked me out and could not see that the face surgery had caused this and directed me to a TMJ expert who then said this was causing the problem and told me to go away and take Amitryptolene and keep increasing the dose for 6 months . Anyway I told my doc she gave me the drug and I proceeded to take this for about 3 months gradually increasing the dose . The pain never budged one bit and so I went back to my doctor and asked if she would refer me to a max facial surgeon . Anyway in the mean time I decided to see my dentist and she made the referral to the Queens Medical Centre and eventually I got the apointment through . By now I was in terrible pain with my lower face and jaw and the drug I had been taking had done nothing . After going to the max facial dept and seeing a surgeon their he said that he would put me in for a MRI scan but it would take awhile to go through after a couple of months it came and after struggling through to the date they did the scan on my face and then two weeks later I went back for the result . Anyway they couldant determine what was causing the pain and only sugester that maby it was some sort of nerve damage . Realising I was in a bad cituation I suggested that maby it might be in order to see a neurologist at the hospital and that was arranged . About two weeks later I saw Dr White a consultant neurologist at the Queens Medical Centre and explained my story to him . He checked my face and said he had no clue as to what was causing the problem. I asked if he might recommend anything to help with the horrendous pain I had and he recommended Pregabalin ( Lyrica ) . At this point I decided that I would go and see my doctor and ask about this drug and also ask about a referral.The doctor get on her high horse and told me im not prepared to refer you to the hospital on the nhs because you went abroad previously . Anyway I told her that I didant want that and that I wanted to go private and pay and see Mr Rowson privately at the private hospital.,and I also explained the dentist had got me the referral anyway . Anyway to shorten a very long story after seeing Mr Rowson several times at a massive cost with private apointments he said he didant know what was causing it but it definitely wasant TMJ ,that was also the opinion of the surgeon who saw me at the hospital the QMC as well . I explained that a certain drug called Pregabalin had been recommended to try and that I had already tried several other drugs and they made no impact on the pain that had taken over my life by now .

My doctor did eventually give me the Pregabalin after making me try Amitryptoline Norotrytoline and Gabapentin all of wich made no impact on the face problem .

I did get finally refered to the pain maintenance clinic after several months and they were happy to just let me keep taking the 400mg a day of Pregabalin I was taking . Ive been on this now for over a year and this drug has just taken control of my life and I live in a continuas fog of being drowsy all the time and twice I dropped to sleep on a bus and ended up miles from wear I should have gotten off the bus . My days are taken over with continued tiredness and drowsiness on a massive scale and also another major problem is the weight gain ,I put on three stone in weight wich concerns me grately . A couple of times ive tried to cut the dosage down with terrible results that make me feel very ill and I feel that this drug has totally got me hooked .

At this point I don't know what to do and am desperate to find what is causing the facial problem and all that terrible pain in the lower face .

I would also like to say that after reading several other peoples accounts of their experience of Pregablin I can truly understand that I might have a massive problem to kick this drug .

Thanks so much for reading my story

Tina Marie Phillips ( The Pink Butterfly )

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14 Replies

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  • I'm really sorry to hear about this. I also suffer from facial pain, and it was several years before they found out the cause. My pain is referred pain from my spine.

    Like you, I went to QMC and was investigated for TMJ disorder by the max fax team. I'd rather not say which doctors I saw - it feels like I've seen most of them! I've been on most of the medications for chronic pain, including the ones you've had, and then some. None of them seemed to work for me. I've also been told by some doctors that they don't know what's causing the pain - and in some cases it's very difficult to find an obvious cause. It's very frustrating to take medication and then it doesn't work but you feel terrible at the same time.

    Please don't try to stop the pregabalin quickly without medical help - take it from one who did just that, and didn't sleep for 3 days. It was silly. But if a drug's not helping you shouldn't have to keep taking it.

    All I can say is don't give up. I was told by one of the pain consultants there was nothing more that could be done for me. My GP referred me to a different pain consultant, who had a different attitude, and although the pain hasn't gone completely, it's now better managed.

    You can ask to be referred back, and if the GP won't do it, go and see another one and ask. It is your pain, and it's you that's suffering, you deserve better than this.

  • Sounds so painful.

    Probably completely on the wrong track but could it be Trigemimal Neuralgia? Not good with spelling.

    They do say it is the worse pain ever

    Pat x

  • Hi Paton

    The experts say its not ,I did ask about this . Its about the worste pain I can describe to be honest . I did ask about problems with the trigeminal nerve and its lower branch round the bottom of the lower jaw . One things for sure moving my mouth and jaw really agrivated my lower face around my chin area and its like the nerve in the lower face goes into a spasm and this also effects my lower teeth . Two experts ruled out TMJ and definitely said it wasant this . Pregablin knocks the nerve pain out but I can still feel the lower face round the jaw tightening up and it feels like it hurting my chin area to just do a common place thing like talk and hold a conversation . Personally I think it all needs further investigation ,but they don't seem prepared to want to do this only keep banging diferant drugs down me in increasing doses and all this seems to be achieving is hiding a problem that's all very real .

    Thank you for your reply Paton

    Regards

    Tina

  • For so many the true cause of chronic pain remains an unsolved mystery. If you do get a diagnosis of course it makes treatment so much easier.

    Trial and error with drugs and combinations is often alll they can do - even when cause is known. Everyone reacts so differently.

    Go back and say this isn't working.

    Pat x

  • Hi Paton

    All I can do is ring the number I have and see if I can get back to the pain clinic . I only got their before through the max facial surgeons invite and they only hold a clinic every few months . If they do let me come back ,im only hopeing ive not just missed a session ,otherwise it might be three months before the next one .

    Regards

    Tina

  • That's awful. Come up here to Scotland - they are brilliant. One call from me and they See David immediately. Consultant always gives me big hug and even bigger kiss - and I'm not the one getting treatment. But love him to pieces as he looks after David so so well. All the staff do.

    Too many people not really requiring CP sertvicrs are being reffered these days and they are over worked and under staffed. I am thier number one fan.

    Good Luck and be ascertive!

    Pat x

  • What further investigations do you think might help? Don't be put off by the GP who said you shoudt be treated by the NHS - ridiculous! I assume you have paid in over the years? OK, you had surgery abroad, a common occurence these days. Its not like you are asking her to put her hand in her(fairly well-lined) pocket!

    n

  • Hi Teadrinker

    Thanks for your reply

    Its interesting to note that you hit the same scenario as myself ,when it gets completed ,the stock answer is " we don't know whats wrong .

    The one and only time I visited the pain clinic at the city hospital was last year and because the Pregabalin was knocking out the pain in my face ,it was agreed to leave it at that . Over the next months the face seemed to settle down a lot ,but I kept taking the drug anyway ,it at least allowed me to get on with my life and look after my disabled mum full time and run my buiseness from home . Its been evident for some time now that Pregabalin has made me put weight on and that coupled with the drowseyness ,very slow bowl motions and insomnia ,its all not been easy .

    It became evident to me that a couple of months ago the facial lower face and jaw thing was starting up again very gradually so last week I went to my doctor to try and explain this to her and all she did was to up my script to 200mg x 3 times a day .

    I did explain that maby I might try and get back to to pain clinic and see the team their to express my concern and see if ther was any other option to follow , and ive got the number for this place at the hospital and intend to ring today .

    Its funny really the max facial surgeon told me Pregablin is easely tolerated and not addictive and can easely be stopped . I did try and cut down a couple of months back to 1x 200mg a day instead of 2 and it was obvious I seem hooked on this stuff and its more than worrying . These doctors especially the consultants worry me because they don't seemed that clued up at times about the full inpact of these drugs . One things for sure either of my two doctors I can see wont get me back to the qmc .

    I would be interested to know what your taking to combat the pain thing ?

    My very best regards

    Tina.

  • Sounds like you were seen by the facial pain team (from the name of one of the maxfax guys you mentioned in your original post). I'm guessing there were a couple of other consultants there as well. My personal experience of that particular clinic was that they tried a few things, were convinced that they things they suggested and prescribed were going to work, and when they didn't, they discharged me. My GP persuaded me to go back to the pain clinic at City Hospital and to see none of the consultants I'd seen before.

    However, prior to going to the facial pain clinic I'd also been to ENT and maxfax at QMC plus seen two other pain consultants. I think we only got there in the end because they'd eliminated everything else first. And because my GP and current pain consultant were convinced there was a physical cause for the pain that just hadn't been discovered. I don't think my story is that unusual - finding a cause and effective treatment for pain is far from quick and simple.

    I have botox injected into the muscles that are causing the problems, at the City hosp clinic. This is not a complete cure and has to be done every few months, but it makes life a lot easier.I had some last week & right now things are still very painful, so I am also needing to use heat packs on the sore bits. If it gets really bad I will take a couple of doses of stronger pain relief but don't do this for more than a day or two as it can cause problems. Exercise also helps to stretch everything out. It's often a matter of trying a few things rather than just one thing

    One of the facial pain doctors suggested seeing an osteopath - not a cheap option at all, and it didn't help me. But at least I found out that it was my spine that was causing the pain.

    Physiotherapy also helped. I have had some of this from the NHS and some privately. The bottom line is that if they give you exercises to do you will need to keep up with them!

    The other thing is to look on Pain Concern's main website for information about chronic pain and how to help yourself. Whatever you can do will make you feel more in control of the problem.

  • I will always recommend chiropractorswarwick.co.uk The Core Physiatry centre. Just phone up and have a chat. Stefaan the main man is brilliant. He has helped me with my severe/chronic nerve pain. You even get a money back guarantee on results.

  • Hi Buttache

    Thanks for your reply

    Ive used chiros before but it was the neck and spine ,im not sure if they could do a lot with nerve damage around the lower jaw .

    Regards

    Tina

  • Have you had any teeth removed before this problem.

    The reason I ask is if the bite of your jaw and teeth has been effected with a collapsed bite this can cause severe pain in jaw and ear. I understand you have done the rounds in dentistry, although if the above is correct a splint may need to be worn over the front teeth for several months Fillings should also be checked by the dentist as sometimes a deep filling can breech the dentine and give nerve pain. The area where the tooth is in the jaw is full of nerves and nerve endings

    Sometimes also if the lower face has been effected you may get problems with the muscle that runs down from the top of the jaw, hence the medications they have asked you to take for Nerve pain. Possibly when doing the procedure they could have nipped or removed part of the nerve down the side of the face. This could cause a transmission of nurlagic , excuse spelling, pain. Sometimes pain in this group of muscle can effect the eye and that can cause watering and pain transmitting from the jaw.

    Remember I am no Specialist, so you need to work out your way forward

    A plastic Surgeon in the UK may have some suggestions

    Good luck

    BOB

  • Have you had any teeth removed before this problem.

    The reason I ask is if the bite of your jaw and teeth has been effected with a collapsed bite this can cause severe pain in jaw and ear. I understand you have done the rounds in dentistry, although if the above is correct a splint may need to be worn over the front teeth for several months Fillings should also be checked by the dentist as sometimes a deep filling can breech the dentine and give nerve pain. The area where the tooth is in the jaw is full of nerves and nerve endings

    Sometimes also if the lower face has been effected you may get problems with the muscle that runs down from the top of the jaw, hence the medications they have asked you to take for Nerve pain. Possibly when doing the procedure they could have nipped or removed part of the nerve down the side of the face. This could cause a transmission of nurlagic , excuse spelling, pain. Sometimes pain in this group of muscle can effect the eye and that can cause watering and pain transmitting from the jaw.

    Remember I am no Specialist, so you need to work out your way forward

    A plastic Surgeon in the UK may have some suggestions

    Good luck

    BOB

  • Hi Bob

    Thanks for the sugestions ,but im afraid your way off , no dentistry and saw a top surgeon 18 months ago ,he couldant help ..........infact I saw three diferant ones and a TMJ surgeon and expert . Its something to do with the trigeminal nerve the third branch that goes to the lower jaw

    Best regards

    Tina

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