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What started your TN?

Posted , 10 users are following.

melinda10856
melinda10856

I have been diagosed with Trigeninal Neuralgia. This pain came in May this year (2017) I have been off work since June 30. I was under a tremendous amount of stress prior to the pain beginning, I was wondering if anyone else has any ideas for what may have caused this? Everything has a cause...no way to find an answer unless we know the cause, I would think.

2 likes, 25 replies

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  • colin69485
    colin69485 melinda10856

    Posted

    Hi Melinda

    Firstly, I'm sorry to hear that you have TN. How was it diagnosed and by whom?

    The disorder seems to be caused, in most cases, by a deteriation in the tissues separating blood vessels from the TG nerve - a little like touching an electric wire that has lost some of its insulation! There may be other causes, too, but I'm not aware of these or any information that suggests stress may be the initial cause. Obviously, once one has the complaint, stress may well be a factor in triggering an attack. Colin 

    • melinda10856
      melinda10856 colin69485

      Posted

      My TN was diagnosed by a DO who ruled out tumor, etc, but I have to see a neurologist tomorrow, I have classic symptoms, but every time I have had extreme ongoing stress I have gotten a Neurological reaction...(Bells Palsy on right side in 2001, Bells Palsy on Left side in 2013, conditions which affect trigeminal nerve) Is there a connection? I know Bells is a form of a herpes virus.... I wonder if there has been any research as to Bells being a precursor to TN like chickenpox is to shingles? Seems there is not enough research on the causes of TN, not much more on the treatment. I have taken gabapentin and Lyrica and  neither has helped the pain. I am leery of taking medicine which alters the brain synapses. So I am grasping at straws here wondering what to do next.  I am looking into an anti-imflammatory diet to see if pain subsides...but since no work since june 30. I have to wait until SSDI check comes to buy antiinflammatory foods.
    • esther48415
      esther48415 melinda10856

      Posted

      I don't know if this is applicable, but it seems if there is a change in the muscualture or fat distribution in your face, it can displace the trigeminal nerve:       

      A rare condition that may be part of the differential diagnosis in women who present with apparent stigmata of remote, partially resolved Bell’s palsy is the unusual syndrome of facial hemiatrophy.30–33 In facial hemiatrophy, which is not due to a cranial nerve VII lesion, there is disappearance of fat in the dermal and subcutaneous tissues on one side of the face. Facial hemiatrophy occasionally presents with an associated severe facial pain caused by displacement of the trigeminal sensory nerves resulting in trigeminal neuralgia (cranial nerve V). Facial hemiatrophy is actually a form of lipodystrophy.

      from this website https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2848459/

    • esther48415
      esther48415 melinda10856

      Posted

      Also from this article:

      If trigeminal neuralgia is preceded or accompanied by hemifacial spasm, this may indicate that there is a tumor, aneurysm, or arteriovenous malformation compressing both the trigeminal (V) and facial (VII) nerves.

      So, TN is assocated with the V fifth cranial nerve and Bell's Palsey is associated with VII the seventh cranial nerve....

  • marlene36342
    marlene36342 melinda10856

    Posted

    Hi Melinda - I am now in my 11th year with TN and had MVD surgery in 2009.  I was at work one day in 2006 and I took a terrible and throbbing pain to one of my teeth.  I immediately seen my dentist and after an exam and x-ray of my tooth, I was told all was fine.  The pain continued to increase until I had my surgery.  During my surgery the surgeon found issues.  My blood vessels in my right lower jaw area were all knotted up and had to be straightened out.  I had a blood vessel that grew up to my trigeminal nerve, wrapped itself around he nerve and was chocking it off.  As well, my brain stem was bruised and wrapped in scar tissue.  This is very strange as I never had brain surgery before and my surgeon could not give me an answer.  Only for the surgery, I would still not know why I was suffering so much with pain.  The surgery was unsuccessful.  I am on disability and suffer with chronic pain daily.  There are many patients with TN who had MVD surgery and are now living pain-free lives.  I hope my experiences with TN gives you some answers.  My best wishes to you.
  • tlynn
    tlynn melinda10856

    Posted

    Hello Melinda, my daughter was under a lot of stress and crying a lot when she got this; her pain is bilateral and we don't think it TN since it is bilateral but it could be.  she got this about 5 years ago and it has been relentless since then. It's been devastating to say the least and she has to plan around her pain; she cannot laugh much, talk long, or even smile much without holding her cheeks from the pain. Good luck with your TN. We believe it was stress that created her pain initially and her constant crying possibly...don't know.

    • melinda10856
      melinda10856 tlynn

      Posted

      OH my I certainly hope she gets better! I know how devastating this pain is, some days I can manage with tylenol along with my lyrica and hydroxizine, but some days I cant function....i have days even when i cannot think. I went to the store the other day and found myself just standing there in the aisle, not knowing what I went to the store for. I dont like this side effect of the lyrica, I am fuzzy and groggy a lot, I sleep a lot, have gained weight also. I cant even imagine having it on both sides...

       

    • esther48415
      esther48415 tlynn

      Posted

      Before my daughter had MVD surgery our strategy, in addition to the medications prescribed was to get her into some biofeedback and relaxation training as she felt the pain 'snowballed'  in other words because the pain is horrible and unpredictable just getting a hint of pain from some trigger like cold wind hitting her face could set off a stress reaction and increase the duration of the painful episodes.

      She also had stress induced incidents- neighbors in her buiding were having an domestic dispute and it got ugly- she had to call the police and the building manager and then had a really long episode of pain.  She felt that managment of triggers she could control- scarves for her face in cold weather, and managing stress better with yoga and relaxation and biofeedback were helpful, not curative but helpful in decreasing the intensity and duration of the episodes.

  • melinda10856
    melinda10856

    Posted

    I also would like to add that I have consistently clenched my teeth over the years in response to the stress. In 2001 during first bout with Bells, my doctor prescribed xanax. I took them daily for a few months then weaned myself down. I  was taking them only when needed, maybe 10 a month. I was told in 2012 or early 2013 that the doctor would no longer allow me to have them. My second bout with Bells came Dec 2013. I cannot get the xanax even though i was not addicted, they work much better and with fewer side effects than the anti anxiety meds they replaced it with (first trazadone and then hydroxizine HCL.) If I go to a new doctor and even mention this to them they act like I am a pillhead in search of a fix. Why do people like me who can get a real benefit from a drug cannot get it because of all the bs? I feel stress and constant clenching of my teeth has something to do with this TN or whatever it is. My health has deteriorated a lot since I was taken off the xanax. Makes me mad that all the drug abuse has made it hard for people who have no issues!.
    • melinda10856
      melinda10856

      Posted

      also, my pain seems to subside while eating....anyone else have this ?
    • kathy75678
      kathy75678 melinda10856

      Posted

      Mine gets worse. I try not to eat anything that needs a lot of chewing.
    • esther48415
      esther48415 melinda10856

      Posted

      Hi Melinda,

      Are you in the US?  My thought is that if you bring a copy of your medical records to a decent psychiatrist you can get your prescription.  Medical doctors, particularly general practitioners, seem more hesitant to prescribe medications usually used for psychiatric purposes, even if they are appropriate.  Moreover, the psychiatrist can very likely recommend someone to help you with the stress of this very debilitating disease and understand how the stress can exacerbate the symptoms.  Find a psychiatrist that has experience dealing with clients who have chronic illness- you may have to ask at a pain clinic for a referral.  Read my response to tlynn regarding my daughter's experience.  Teeth clenching can often be a stress response that can, with relaxation exercises, improve, but it is psychologically reassuring that if those exercises are not working, that you have a back-up of medication!  Probably one of the reasons you were able to wean to so few is that just knowing there was a possibility of relief for a really bad episode of pain lowered you level of stress and anxiety.  It is the unpredictability of the frequency, duration, and potential for relief (or lack thereof) that can be immensely stressful and cause a 'snowballing' effect.

    • melinda10856
      melinda10856 esther48415

      Posted

      Yes I believe you are right! No one I have talked to will prescribe them to me, so I will have to deal with it I guess. On a brighter note, I was at a neurologist appointment today and he gave me some good news i think. He said while I do have symptoms of trigeminal neuralgia, he thinks there are enough differences in symptoms that he thinks I do not have trigeminal neuralgia. He thinks that over time I will get over this pain. In the meantime they are going to keep me on medication (lyrica, and if increasing that doesnt work, then tegretol) I may just try my own remedy instead. I am tired of being "fuzzy" and groggy all the time, and if the dose is increased I may not be able to work at all. I got called for a new job yesterday to start next wednesday. Anyway I will still pray for all of you and hope that the pain goes away for all of us!

       

  • mallory22442
    mallory22442 melinda10856

    Posted

    I have typical TN which electrocuted one side of my face and was such pain I could only scream. went to Mayo clinic in United States and a MRI showed the artery which had moved out of place and was touching the trigeminal nerve in 3 olaces .Had MVD surgery and have been good now for 10 months. This is not to say that I do not sometimes feel a very slight electrical ache in my teeth ,jaw ,and chin. This is the most common cause for TN with the severe Electric shocks on one side of the face..Good Luck !!!  Mallory
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