Please someone help

Posted , 9 users are following.

I am just after some advice please! I have been diognosed with the start of trigeminal neuralgia. But I am unsure weither this is what I have so I would love some one to tell me if what I am experiencing is this?

It started 4 months ago, it effects the right side of my face from side of my forehead, down my temple to the side of my jaw. I started getting it every 3 weeks and now I get it 2 times a week and lasts anywhere from 1-3 days. The only way I can discribe that it feels like shingles or the herpes sensation. I can also feel it coming as my face gets sensitive. I can't touch it or have anything touch it as it is so sore. Please help.

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  • Posted

    Hello Angel,

    Trigeminal neuralgia is a complicated thing so i am not surprised that you are unsure. Who diagnosed this for you, your GP or a Neurologist and did they provide and medication? Your symptoms are rather like I had when mine first started although I did not go and get help until I was having the pain constantly which was not a good idea. I am currently taking Tegretol and Lyrica.


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    • Posted

      Thanks for replying to my question.

      It was through a go, I have been referred to a specialist but it wasn't a neurologist it was a eye nose and throt specialist because they apparently deal with everything from shoulders up, he didn't put me on medication because I have a few other things going on with my lymph nodes so he wanted me to see a specialist first. Thanks for letting me know how your symptoms started. I was confused!

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    • Posted

      What part of the world are you in btw. I am in Australia but there are people on this forum from the U.S. as well as the U.K. It helps to know where you are as things differ greatly from country to country.
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    • Posted

      I am in new Zealand! I am also only 25 and I have read that its not often people get it under 50? I guess I am just a bit worried at the moment that if this is what I have its going to progress and get worse.
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    • Posted


      As Valkyrie says everone's experience of TN is different just as where you live can impact on how it is managed.

      In the research I've done there are in fact reports of children as young as 3 getting it, and it seems that many of the forum members are in their 20s or 30s so the medical profession has it considerably wrong when they say over 50s get it more often! My Rheumatologist (long story!) actually told me that my experience of this pain couldn't possibly be TN because he has looked into it for his mother-in-law and at that time I was only 50!! Many rude words were going through my head, anyhow I shall correct him when I see him next January as I have since been given a diagnosis of TN and the medication has helped to reduce its frequency and severity.

      Specifically my pain started in the left eye, it got much worse this February and spread to other parts of my face and head, affecting both sides. I did have stabs of pain over my head and hideous pain in my teeth long before the eye pain started but I think I decided that was due to previous head injuries and as for the teeth I have slightly receding gums and put the pain down to the cold reaching the nerves in the teeth(!!). I had also thought the eye pain was a type of migraine. I had this gradually worsening pain in my left eye for about 10 or so years.

      My left cheek tends to tingle and feels numb but with a spikey-footed spider crawling over it just before and after an episode of pain. If it affects my left eye I am totally incapacitated for anything up to 20 hours, and before medication this would be between 4-7 days. Anywhere else, head, face, left or right it usually lasts only a few minutes but it can occur up to 50 - 100 times a day. 

      So, with regard to the Rheumatologist, I have something along the lines of Lupus or something autoimmune going on and the medication I take for it can affect my liver just like the medications for TN so I have had to very slowly increase the dose. I will be discussing this with my GP this week as I am still getting pain.

      Triggers for TN pain can include cold, touch, teeth cleaning, chewing, biting, sometimes movement of the face, as in smilimg, laughing, yawning, others find that lying on the affected side can be a trigger too. Certain foods can apparently trigger it too, such as very spicy foods, cold foods and so on. For some there are no triggers. It is very unlikely that any two people will have exactly the same experience or that that experience will match the textbooks!

      Causes vary. Classic TN is due to a blood vessel wrapping around or pressing on the nerve just at the point it divides into the three branches as it enters the face. Other cause can be due to Shingles or other viral infections, damage due to injury, such as head/face injuries, some may be due to illnesses such as MS, in this case it's because the nerve coating (Myelin) has been damaged. There are probably other causes including those within the remit of ENT specialists but to be honest the list goes on.

      You do need to be seen by a Neurologist, so ask your GP to refer you sooner rather than later.

      Best wishes.

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  • Posted

    Hellp Angel,

    Susan has done her homework, or has gone through hell as we all have. She hit on everything I have experienced, except that one side for me was due to dental work...lots! The only thing I can add is try and go see an Oral and Facial Specialist.

    God Bless,



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    • Posted

      Homework and hell!!

      I have nursed people with both TN and Lupus and never thought that I would suffer such pain too, it was a shock, literally and figuratively, lol.


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  • Posted

    Angel 41260,

    Go to your primary care doctor and tell him/her your symptoms he/she will most likely send you to a neurologist. Who will send u 2 a neurosurgeon, who will jump to do MMD on u.

    Tell Neurosurgeon "stop!"

    Ask about other methods 4 TN, that does not involves surgery. Surgeon will not be performing these other methods available for TN sufferers.

    There's other procedures besides MVD so check those out.

    first that is my advice because I am having a horrible experience after my MVD with double vision from the July 27, 2016, until today, September 26, 2016) still have that with me.

    P.S, go to six neurologist b4 u let them tell u that u need any procedures.

    My MRI showed nothing, also make each Neurosurgeon do his own test, dont let him use othet doctor info, tell doctor to do test on u himself. Say to Neurosurgeon Test me yourself

    Have Neurogist send u to places where others procedures r done and let those doctors explain to u their procedures themselves.

    This is my advice to u.

    God bless

    us and keep us and give us peace

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  • Posted

    Hi I've just singed up I was sort of told I had it 9 months ago still waiting for diye to put through my vains,in th mean time I've been back to doctors to tell them I can't cope any more I've tried tables but they turn me into a weirdo😕I've tried saying to the doctors but they are just pushing pills or depression tabs but because I'm shy I've trying to say since the pain stared I've changed my personality is different I have gone really quite and suicidle thoughts 😥I'm not like that normally I've got no one that understands plus i don't like stressing anyone it's a horrible thing to have I wish I could get help even pay but round her there's no hope??😊X

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  • Posted

    Hello again Angel,

    I think there is a New Zealand girl on the other forum I am on which is on Facebook (Trigeminal Neuralgia- Australia/New Zealand) and I am fairly sure she had an MVD operation just recently. I will check. It's good to be on more than one forum so that you can get a wide view of what is possible to help you. As Susan has said, you must try to see a Neurologist as others may not have the experience to really advise you well. We are all with you in your journey so keep in touch.  Feel free to join us on the Facebook forum as well. My name on the Tn Australia-New Zealand forum is Sally.

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    • Posted

      There are several groups on Facebook that I know of:

      Trigeminal Neuralgia UK Support, Trigeminal Neuralgia New Zealand, Trigeminal Neuralgia Australia/New Zealand, Trigeminal Neuralgia San Diego, Trigeminal Neuralgia and ME.

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