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Atypical TN...anyone else with this

Posted , 9 users are following.

karen36710
karen36710

I was diagnosed with TN 12 weeks ago.  Woke up in the AM with a sore face that night the electric shock like pains started and came back when I woke up in the next morning.  Family doctor put me on carbamazepine low dose...it took the pain away immediately, then he doubled then quadrupled the dose all in the initial prescription and in less than 2 weeks.  I was a zombie so he took me off this drug and put me on gabapentin.  I then went through 10 weeks of increasing the meds every 5 - 10 days for break through pain till I reached 2700 mg a day.  Then he added carbamazepine again and a week later I had hives so he gave me prednisone, and then 3 days later I had more hives, was very very sick, BP was extremely high and I had lots of sores in my mouth.  He took me off the carbamazepine (allergic reaction to this drug) and over 3 days took me off of the gabapentin and started me on lyrica.  The lyrica seemed to work initially but again break through pain. I saw a neurosurgeon yesterday.  My MRI shows the blood vessel near the nerve, but it is not a clear compression.  I have facial droopiness, numbness and one side constant and intermittent facial pain plus the electrical shock like pain.  Diagnosis is uncertain....could be atypical TN or it could be trigeminal neuropathy.  The specialist said I could continue with the lyrica (but I weaning myself off of it, because I am still at a very low dose) and to take oxcarbazepine.  20% chance I will be allergic to it because of the allergy I already have to carbamazepine.  This is a little scary.  If the Oxcarbazepine works then this indicates TN (personally I thought I already had this with my initial treatment of carbamazepine).  He did not tell me what to do if the oxcarbazepine does not work!  I will done with the lyrica by tomorrow, Sunday.  I see my family doctor on Monday afternoon and will discuss all of this with him and likely start the oxcarbazepine on Monday night...with some prednisone handy!  Has anyone else had this experience?  Has anyone else had TN/symptoms where one side of your face gets sore from cool breezes.  Oh the other symptom I had at onset and again more recently is right under the jaw pain when swallowing...I would be really interested in hearing if anyone has had this.

I really need more info and would appreciate hearing about anyone else's similiar experience.  Thank you

1 like, 7 replies

7 Replies

  • clint71
    clint71 karen36710

    Posted

    The pain sounds like TN, but the numbness and facial droopiness does not. I would definitely seek additional opinions.
  • dona40912
    dona40912 karen36710

    Posted

    Hi Karen,

    I have atypical TN/neuropathy. It started in December 2015 with pain under my teeth. After 4 months visiting dentist I started to get electric shocks. Then tried 2 months ALL THE PILLS! My MRI also showed the blood vessel near the nerve, but it was not a clear compression. In May I had the MVD operation. There was scar tissue on the nerve, that wasn't on MRI. And actually 3 blood vessels were touching the nerve. Shocking pain went away, but constant pain stayed. Now taking max dose 3600 mg gabamentin, antidepressants and opioids. Life is hell at the moment. Have tried acupunture, no help. Will try again. Don't really know what to do. Doctors don't know either. What are your doctors saying about treatments (not pills)? How old are you?

  • patyrod
    patyrod karen36710

    Posted

    I have some kind of autoimmune disorder which started last November almost overnight.  They can't really diagnose me other than calling it a connective tissue disorder.  I have bilateral trigeminal neuropathy.  My whole face and mouth are numb, yet with some supersensitive areas of my mouth tissue.  For a while, I had to puree all my food because I couldn't control my chewing and was biting my lips and the insides of my cheeks.  My speech is also affected because of the numbness.  I have a slight droop and sometimes a drooling problem.  I get all kinds of intermittent trigeminal pains and aches on both sides.  The neurologist and rheumatologist have tried several medications.  I had a horrible reaction to Tegretol.  The only slight improvement I have had is that I can chew soft foods again, but I have to be very careful so it takes me forever to eat.

    Apparently, bilateral trigeminal neuropathy is extremely rare, so they don't quite know what to do with me.

    Then, in May, I was struck (again almost overnight) by rheumatoid arthritis.  I am currently taking Methotrexate and Plaquenil for both diseases, but have not really improved.

    I got mouth sores from a fungal infection which was probably due to one or more of the medications.  They had me suck on antifungal lozenges several times a day and it cleared up.

    I hope that your doctor will send you to a rheumatologist.  Has he tested you for autoimmune factors?

     

  • karen36710
    karen36710

    Posted

    Update...last lyrica was yesterday morning.  I had a rough night.  As an aside I get horrible hot flashes especially about every 4 weeks they are really bad for a week....and this is that week.  I went to bed very tired and ready to sleep and the hot flashes hit, so there I was awake.  I took a sleeping pill which normally works very well and it did not...so of course the facial pain became more intolerable.  I took morphine 5mg and that put me out and I got about 5 hours of sleep.  I am kind of miserable today between the drugs and the lack of sleep.  Pain in my face is tolerable more constant than intermittent.  Let's see what tomorrow brings

     

  • paul49262
    paul49262 karen36710

    Posted

    Hello Karen my daughter was recently diagnosed about 6 weeks ago and she is 20 years old.

    they have started her on Carmazepine with Tramadol and naproxen and this combination seems to be working but I can't see them allowing her to take this amount long term. We have the first neurologist appointment in a couple of weeks time so will hopefully find out more then.

    However cold drafts do bring the pain on for her as well but she has not had the side effects to the drugs like you just some constipation at the start but that did go.

    God luck to you and hope you are able to control the pain.

    Our daughter has been going to Reiki sessions and that has helped her.

  • ibrahim57343
    ibrahim57343 karen36710

    Posted

    Hi everyone hope everyone found some sort of relife ans enjoyment in life

    Iam 29 just been said i have TN Type 2

    4 weeks ago it all started with a pain on my tempel then slowly moved into my ear now its everywhere down to my throat its just sensetions and pain on my tempel , no electric shock type of pain ,

    Its taken over my life , iam on 10mg of some stupid pill thats makeing me like a zombie

    Any advice what works and how old did this effect you ?

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