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  • My Story: Trigeminal Neuralgia not TMJ

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    Old 08-13-2016, 08:54 PM   #1
    ltshiple's Avatar
    Join Date: Aug 2016
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    ltshiple HB User
    My Story: Trigeminal Neuralgia not TMJ

    This is my story of severe facial/jaw/head pain post-wisdom teeth extraction. The least I could do was write a post that may bring the light to someone else experiencing a similar pain post-surgery, perhaps searching for answers like I once did.

    Three years ago I had my wisdom teeth removed. An oral surgeon removed all four of my impacted wisdom teeth & two small cysts attached to the teeth. I was told the wisdom teeth would never grow through the gums (impacted), but I may experience pain regardless, if I don’t have them removed. So like most every other twenty-something I had oral surgery, the only difference was my surgery could affect me for the rest of my life, which became evident to me in the weeks/years to follow.

    The week I got surgery I wasn’t in an excessive amount of pain - although this may be due to the consumption of some pain-killers. It wasn’t until the second week where the symptoms began to unfold. First, I had two dry sockets despite my efforts to avoid them. I had strips of antibiotic medicine inserted into the sockets and the pain eventually went away. Weeks passed and my jaw was sore but I assumed the soreness was a result of just having surgery. But more weeks passed and the throbbing continued, but was then accompanied by a sharp stabbing sensation in the back of my mouth. I was at work interning at the Belk Headquarters (my first week) so I was not going to leave until I couldn’t take the pain anymore. I soon realized I could not handle it. The pain was so bad that even after taking hydrocodone I was nauseous from the stabbing. My supervisor was awesome and understood so I left to make a last second appointment (on a Friday) at the dentist. The dentist gave me numbing ointment and scheduled me the following week to see another oral surgeon – little did I know the weekend was about to be one of the worst of my life. I went home hopeful to have relief of the pain but it only got worse. The pain was so bad I wanted to be knocked out and would have done anything for relief. Relief came on Monday. In fact after a weekend of pure torture the pain escaped me in an instant. That instant turned out to be when the nerve of my back molar died. An infection had killed my nerve and at that point I had to have a root canal to remove the nerve from my tooth. The procedure was about a 5-hour process with 3 separate visits. I was warned it would be extremely painful, but at this point I didn’t know how pain could get worse than the previous weekend. The root canal honestly did not hurt at all – likely because the nerve was dead. I was relieved after the root canal, thinking the pain was over – but I was wrong.

    I had taken time off multiple times from my internship (they probably thought I was crazy) because I had already had so many appointments with some answers but still no end in sight. The pain I continued to feel was in my jaw but I could not pin point it. It was a sharp pain that would throb constantly throughout the day. The pain seemed to be in my jaw and radiate through my cheek across my upper jaw line and up the side of my head to my temple. I complained daily. The pain was awful all-day every-day and through the night. The only relief I had was when I would take Benadryl and more than one. I honestly could not escape it. It’s hard to describe. When you go to a doctor they help you with medicine, ice, heat etc. You have pain but then you find relief. This wasn’t the case for me. No amount of ice or heat or pain medicine would help this pain, and I could not figure out why. It was non-stop throbbing and I wondered how everything changed so fast. Regardless of how I felt I had a 10-week internship to finish, and a lot more medical research to do. I visited every website I could find entering my symptoms to try and diagnose myself (I know this can be a bad idea). I had a number of ideas in mind but could not seem to find anything that encompassed all of my symptoms – no medical post, blog, story, diagnosis etc.

    At this point it had been almost 2 years of pain and I was determined too find the cause. I contacted the oral surgeon office and had multiple appointments, scans, x-rays, and a MRI of my jaw joint. At this point they diagnosed me with TMJ (Temporal Joint Disorder). The surgeon agreed it was likely from wisdom teeth surgery since the jaw joint is extended open for a long period of time. Apparently it was not unheard of to have TMJ post surgery – in fact it was common. At this point I was just relieved to have an answer. They gave me multiple jaw exercises and equipment to perform the exercises – Let me just tell you, if the doctor said do 100 per day I was doing 500 because I was so desperate for any kind of relief!

    At this point I had already beat the pain topic to death with my parents/boyfriend/boyfriends family/friends/the world – this wasn’t the first time either. I’d been terrified of simple things like needles my whole life, so those around me assumed because as a child I “cried wolf” that my pain was not near how I described it – and rightfully so. But newsflash it was 15 years later… after wisdom teeth extraction… 2 dry sockets… a dead nerve… a root canal… and shots like candy – let me just tell you: pain was just a thanggg. BUT THIS PAIN WAS DIFFERENT. I got tired of complaining and asking for any help – basically asking anyone to pull on my head to relieve pressure and to push hard on my upper and lower jaw as I opened and closed my mouth (among other strange requests). For weeks I did what I was told to do but doubled and then some. Shockingly, I felt no relief. I would just cry constantly because I felt nothing was going to go back to normal. I had broken bones and had relief but I couldn’t get relief from this deep throbbing pain in my jaw/face for 2 years.

    Summer ended and I dreaded going back to school in pain. I would not only be able to sleep well, but I also would have school to focus on – which was already stressful in itself (overachiever I know). With the help of my boyfriend, lots of pain medicine, B12 shots/multiple massage therapy appointments each week etc. I pushed through the pain. Without relief from any treatment, I had a hard time accepting that I had TMJ. I was doing everything I was supposed to do (and more). The oral surgeon suggested having botox injections in my jaw joint and temple to help with the severe TMJ symptoms. My parents were NOT happy with that idea. There were some scary side effects, the treatment only lasted 4 months, it only masked pain/did not fix it, oh and it was 4000$ every 4 months for injections because the treatment was not approved by the FDA and was considered cosmetic and not medical. I begged my parents to let me get the injections – YES I actually wanted 18 shots in my face/head. No shots would amount to the pain I had been in for years. BUT my parents did not approve – and rightfully so. I continued on with my school year until late September. I think a combination of things like being the 2nd test week, not being able to sleep, and feeling hopeless in pain for so long built up until I just hit a wall. It was a Sunday, I broke down, called my parents, and went straight home. I felt depressed at this point – almost accepting my situation wasn’t going to change and it put me in a rough place. I skipped school for 2.5 weeks making all of my finals worth 50% of my grade, and as a first semester Senior with a 4.0 in Finance in Accounting, my want to be perfectionist attitude made me have such high anxiety for my situation in health and school. When I returned to school I did what I could to get by and kept on keeping on. Now I was seeing my primary care doctor and accepting the anxiety from the whole ordeal. I had pretty much given up on figuring out my pain. In fact the doctors inability to help me, and my family being tired of my situation as much as I was, was enough to make me just go with the motions and believe maybe I was crazy – “maybe nothing was wrong with me”. Weeks later (about 2.5 years into this) I went to my primary care doctor for a check-up and I saw a new doctor at the practice that was on the same team (another opinion) regarding my jaw pain, headaches, anxiety, and lack of sleep. I had come home from school for a college break and always found myself in a doctor’s office (sorry insurance). The doctor heard me out, and didn’t make me feel crazy (didn’t happen often at this point) accept with my primary care doctors. He tried to understand my pain and brought up a drug called Amitriptyline (Elavil). It was “just another possibility” to treat my pain, but if the medication worked, with my previous medical history, it would indicate that I have Trigeminal Neuralgia – likely caused by damage to the facial nerve during wisdom teeth extraction.

    If you take anything from this post (if you are in a similar situation) take Amitriptyline LITERALLY and FIGURATIVELY. This drug saved my life. I was so hesitant to take it. It is considered an antidepressant and has real initial side effects. Basically the first day I took it I floated down the stairs, thought I was flying, thought I was on fire, and you know other common side effects (CRAZY, I know)……….Yes, it was scary but only for 2 days!

    After just a few days on Amitriptyline I felt like a new person. Within weeks I was 100% pain free. At this miraculous point, my primary care doctor diagnosed me with Trigeminal Neuralgia: “a severe neuropathic chronic pain disorder affecting the trigeminal nerve (also known as the fifth cranial nerve: a three-branched nerve that carries sensations from the face to the brain and controls facial motor functions such as biting and chewing). Trigeminal neuralgia is considered by medical experts to be one of the most painful conditions known” (*********).

    So all of a sudden I’m not crazy. An almost 3 year journey of excruciating pain and thousands of dollars spent ended from a diagnosis from my primary care doctor, not a single specialist in the field of jaw/face/head had mentioned nerve damage. Taking Amitriptyline every day changed my life. I had accidently forgotten to take a dose one day this past semester and I can honestly say I have no idea how I EVER lived in that pain for 3 years – I guess you just become one with the pain after so long.

    I have never been happier to say that I no longer have facial pain since I have been diagnosed and treated with this medication. I have been taking Amitriptyline for 8 months now and am now more thankful than ever before for the health the good Lord has given me.

    I wrote my story of pain post-wisdom teeth extraction in hopes that anyone who may be in a similar situation to what I have gone through may find my experience and healing answers to be of help to them. I searched for years for answers, and if I had come across a post about Trigeminal Neuralgia related to mouth surgery, I would have checked another possible diagnosis off of my list. I will say the only negative to the Amitriptyline is that is MAY cause weight gain. I have unfortunately gained 17 pounds on the medication, but the relief has justified it. I am currently in the process of switching medications to Topamax, which should reverse weight gain and still provide the relief to my neuralgia. If it does not I have a list of other medications I can try, but I always know I can rely on Amitriptyline for the relief I never thought I would find!

    If this post helps even just 1 person it will be worth it. Prayers to those of you in pain, even when you don’t see the light, it is there! Posting this was “the least I could do”.

    Cause: Wisdom teeth surgery nerve damage
    Initial Diagnosis: TMJ
    Final Diagnosis: Trigeminal Neuralgia
    Medication: Amitriptyline > Topamax
    Result: PAIN FREE!

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    Old 08-14-2016, 04:12 AM   #2
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    marku1999 HB Usermarku1999 HB User
    Re: My Story: Trigeminal Neuralgia not TMJ

    WOW! What an amazing story! Thank you for sharing and providing hope for others. I am so glad you found treatment / relief from your pain.

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    Old 08-14-2016, 10:08 AM   #3
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    austinbobcat HB User
    Re: My Story: Trigeminal Neuralgia not TMJ

    I am so happy you found a doctor that was able to help you, and I am glad you are living pain free! Thank you for sharing your story! God Bless You!!!

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