Facial Pain Diagnosis ?

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My wife has been having momentary severe pains on the left side of her face.  The pain is intense, and lasts from a few seconds to a few minutes.

The pain extends from the scalp above the left eye, down the forehead above left eye, down around the inner corner of the left eye, along the left side of her nose to her left upper lip and inside the roof of the mouth.  It's like an electrical shock. The more severe attacks, causes her left eye to tear and gets bloodshot instantly along with swelling around the lower eye lid.

The pain can be triggered when she pulls on her scalp above the left eye, but also when brushing teeth, eating something tart, and sometimes with no stimulus at all.

This has been going on for a several months, sometimes going a few weeks with no symptoms, but now several times a day.

Her ENT doesn't see any sinus infection, dental x-rays show no problems.

Her doctor thinks maybe trigeminal neuralgia, but a neurologist doesn't think so because of the tearing and bloodshot eye, but he also said it could be.  she was prescribed Indomethacin, which caused severe side effects - dizzy, pounding/ringing in ears, nausea, itchy rash, so her doctor took her off of it.  Then prescribed an anti-seizure med called Gabapentin which has not reduced the symptoms.  The only thing that has helped is Tylenol, which reduces the pain, but she can tell that it is still there.

An MRI last week showed no abnormalities associated with Trigeminal Neuralgia.

She has Chronic dry eye, but her eye doctor doesn't think that would cause these

symptoms.  She had nasal surgery about 2 years ago to correct a deviated septum.

2 dental implants on the lower left jaw were done 3 months ago. 

The first available follow up with the Neurologist is mid October, and her episodes are getting worse and more frequent. 

Any idea what the cause might be?

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  • Posted

    I don't have a clue about what's going on with your wife but what caught my attention is her being prescribed Gabapentin. This is not an anti-seizure medication. I was diagnosed with Peripheral Neuropathy in both feet and hands and I've been on 4 mg Dilaudid and 50 mg Tramadol for the pain. My doctor did prescribe me Gabapentin because for some patients with my disease it has helped them in the past but for me it didn't help with the pain, all it didn't was make me drowsy and sleep all the time so I quit taking it. I have also been diagnosed with Complex Partial Seizure Disorder and Simple Partial Seizure Disorder which I take medication for. Why would a doctor prescribed any patient anti-seizure medication when they are not exhibiting seizures, especially knowing that Gabapentin in not an anti-seizure medication? I've also been diagnosed with having a history of Lacunar and Ischemic Thrombosis Strokes as well as White Brain Matter Disease. I'm on about 18 different medications and I can assure you that my wife, who is my primary caregiver, inspects all medications I'm prescribed by doing an extensive online research on the drug, it's main use and side effects. My wife had a deviated septum surgery a few years ago and she had many issues afterwards. She said if she knew what she would had to deal with after the surgery she would have never had it done. If I was a betting man I believe there is something going on related to your wife s deviated septum surgery.

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    • Posted

      I don't want to sound argumentative but;

      My wife's neurologist used the term anti-seizure medication when he prescribed it.

      One of our grandchildren is also on Gabapentin for childhood epilepsy and that doctor calls it an anti-convulsant/ anti-seizure medication. 

      Google search results for Gabapentin: "Gabapentin is used to treat some types of seizures and for postherpetic neuralgia (nerve pain caused by shingles)."

      Maybe it isn't technically classified as an anti-seizure med, but that's what my wife's doc called it, and that's what my grandchild's doc calls it.

      I also do my due diligence, the initial 'anti-seizure' med he prescribed was Carbamazepine, which I discovered should not be prescribed for Asians (my wife is Asian) without a blood test for a certain gene marker due to a much higher probability of a severe reaction among Asian people.  When I questioned the doctor and the pharmacy they said I was absolutely right and then prescribed the Gabapentin instead. 

      You may be correct on the effect of the deviated septum surgery, and we told the neurologist about that, along with the dental implants, chronic dry eye, so he knows all that health history.  Still, we don't have much confidence in him, as our experience with his practice has been a comedy of errors.  Prescriptions written incorrectly that the pharmacy couldn't fill without correction, incomplete report transmitted to her primary care doctor, he knows she is Asian, yet he wrote a script for something he shouldn't have without a blood test, and a month delay in getting a script written for the MRI. Fortunately our health insurance carrier stepped in to get it scheduled.

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    • Posted

      I wouldn't take your response as argumentative. Like I shared previously, I've been diagnosed with having Multiple Lacunar strokes on the right side of my brain, 2 Ischemic Thrombosis Strokes, Complex Partial Seizure and Simple Partial Seizure Disorder, White Brain Matter Disease, short term memory loss and my speech has been greatly impaired due to the Lacunar strokes I've had, I now stutter, I experience what I call complete black out disorders. It's took 5 different Neurologists to finally figure out my conditions. So you may have to seek the advice from a different Neurologist. I had one neurologist tell me my problem was migraine headaches and he came to this diagnosis without even looking at all the CD' s I had from my MRI brain scans, EEG test and CT brain scans. Of course we never went back.

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    • Posted

      Thanks Jon, wow, you've been through a lot. 

      I guess my wife and I have to be patient, the more we read about these issues, the more we realize how complicated this area of medicine is. 

      I finally came upon an article that answered our question of why her neurologist had prescribed Indomethacin.  He never told her what he thought she had, just that he didn't think it was trigeminal neuralgia.  Apparently he thinks she has CPH ( Chronic paroxysmal hemicranias ), which is more common in women and responds well to indomethacin.  Her problem is that she had severe side effects from it.

      Again, thanks for your response, and we pray that you get better.

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    • Posted

      I pray for a speedy and complete recovery for your wife and for strength for yourself. I know it's not easy. It's not over for me, I deal with dizziness, balance issues and headaches and falling down on a daily basis. I have an appointment with an ENT next month. I had to quit watching t.v. over a year ago due to my dizziness. It's not like regular dizziness, it's kind of like when your falling in a dream, it's similar to that, some days are worse then others. But I've come to accept it. I can't change it, I can't control it, but what I can control is how I react to it. Yes there are some days I get so frustrated because I fall down, when I walk outside I have to use a walker to get around and I will run into walls and I just want to give up. But I can't do that, there are people, even children worse off then I am so I'm thankful for what I do have instead of focusing on what I've lost. Good Luck to you and your wife. Because thankful for the blessings you do have, it could be worse my friend.

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  • Posted

    I replied to your post a couple days ago and your wife's condition has been on my heart as well as yourself. I don't know what your religious or spiritual views are, I'm a Christian and a follower of Jesus Christ and I felt compelled to tell both you and your wife that your creator, your Heavenly Father loves you both with an overwhelming unconditional love and HE is well aware of your wife's physical condition and He is definitely wants to heal her, all He's waiting on is for you both to fully trust Him without any reservations, to call out to Him and ask for His help and sit back and watch the God of all creations move on your behalf, in the name of His Son Jesus Christ Amen & Amen.

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    • Posted

      Jon, Thank you for the encouraging words.  We, also, are Christians; following our Lord and Savior Jesus Christ.  We came to know him late in life, yet we are focused on learning and growing.  As my wife says, she wouldn't trade the peace and joy she now has for all the riches in the world.

      We also know that situations come up in our worldly life that can test us, but also refine us.  I try not to question why, or whether the source is from God or Satin, I just try to respond through Christ.  We have had many discussions lately within our small group about faith based healing vs. man's medicine, to the point of not having the faith of a mustard seed if we seek modern medical help. 

      I believe that God gave us these bodies, as temples for the purpose of glorifying God.  And our stewardship responsibilities include taking care of these temples that God gave us to live in.  And I believe, just as eating right, exercising, abstaining from smoking and drugs is our responsibility, so is seeking medical care when we need it.

      I try to rejoice in my suffering (but only my own), it really stresses me to see my wife of 45 years suffer.

      So we pray.  Pray for healing, pray that God gives wisdom to the health professionals that treat us, and pray that even in our suffering, that we respond in a way that gives glory to our Lord Jesus.  Amen.

      When my wife read your story, she said "oh, he has gone through so much", and we pray for you also.  It is a testament to your faith, that going through all this suffering, that you still take the time and have the desire to tell others about Jesus, and the love of God the Father. 

      I always marvel at how God brings marvelous people into our lives.   It has been a blessing to receive your replies. Thanks and may God Bless you.

      Jim

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    • Posted

      Brother Jim. After I first responded to your post about your wife's physical condition and then after my second response, for some reason I continued to think about you both. I know how you feel as a man and husband, to see your wife suffer and you feel helpless. Know this Jim, we live in a fallen world and no diseases or sicknesses are brought on by our Heavenly Daddy, He may use the situation for His Glory, but again, no diseases or sicknesses are brought on by our Heavenly Daddy, you can rest assured of that 100%. All sicknesses, disease and death happened due to the fall in the garden and the devil is behind it all. Please allow me to pray. Heavenly Father, I come humbly before Your throne of grace. Nothing happens by coincidence in Your Kingdom. For whatever reason You joined, Jim, his wife and I together and right now I ask in the name of Your Son Jesus Christ for a complete and total healing for Jim's wife, however You Father decide to heal her, whether by Your miraculously healing power or through the medical community, we ask that by whatever means You decide to do it that You Father would accelerate the process. If You choose to use the medical community then I ask that You will hand picked the doctors and specialists Yourself. I also ask that You Father provide supernatural strength and peace to Jim and speak to him and let them both know how much You love and care for them. I ask all of these things in Jesus mighty name AMEN. I stand and wait to hear from Jim soon on bow You Father supernaturaly healed his wife from the top of her head to the bottom of her feet. Nothing goes unseen before the Father, He sees everything, and I believe He is going to heal your wife. I know at times it's difficult, be honest with God. There are times I tell Him the way it is and I don't sugarcoat it, He sees my heart and knows how I'm feeling and what I'm thinking, it's not always easy to have faith and to believe. Please keep in touch and keep me updated. I will continue to pray.

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    • Posted

      We were finally able to get an MRI done and get another appointment with the Neurologist. 

      The MRI did not show anything conclusively, however the neurologist did confirm that he thinks my wife has a somewhat rare condition called CPH headache (  Chronic paroxysmal hemicranias ) that effects about 1 in 50,000 and more common in women. CPH means Chronic Sudden Violent Pain on one side of the head.  The only known effective treatment is Indomethacin.  Symptoms can go into remission for several months, but then return.  About 5 attacks per day are common lasting from a few seconds to several minutes.  They can be triggered by brushing teeth, chewing, touching the effected side of the face, and sometimes without any warning.

      The Neurologist put her on a lower dose of Indomethacin and so far she has not suffered from the previous side effects.  The symptoms have been gradually subsiding.  Hopefully the diagnosis and treatment is correct.  The Indomethacin can be stopped once the symptoms have disappeared and then taken as needed if the pain returns. 

      Causes of CPH appear to be from a number of possible aging or injury conditions, ranging from tumors, aneurisms, arterial abrasions, nerve sheath demyelination, and some other acquired genetic conditions.  The only condition noted on her MRI report was some mild demyelination.

      There have been several issues on the same side of her face that added to the mystery, deviated septum surgery that was primarily focused on the side where the pain is, removal of a mole on that side, dental implants on the lower jaw on that side.

      Her Neurologist and ENT doctor reviewed the MRI and do not think the deviated septum or removal of the mole are causing the pain.  I don't think the dental implant on the lower jaw would be causing the pain up around the eye, nose and forehead would be the cause since she is experiencing no pain or numbness in the lower jaw or lip.  And she started having these symptoms prior to having the implant done.

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