About Me

The short version..

I am 28 and I have been diagnosed with Trigeminal Neuralgia in July 2013. My G.P actually diagnosed the condition within minutes, and a Neurologist confirmed the diagnosis last September. I am lucky that I have received such excellent medical care, and I am currently trying to control my TN with various medications. (I am basically trying them all to see if any work)

My aim is to promote awareness, and make people understand. On the outside, I look fine, but internally my face feels like it's burning constantly and I get electric shock attacks several times a day. The pain is the worst that I have ever experienced.

This blog is a place where I sometimes vent, try and give some information and chronicle my continuing battle with Trigeminal Neuralgia. If anyone reads this, I would be grateful for their input. Any suggestions about promoting awareness in Ireland (and around the world) would be gratefully appreciated!

30 comments:

  1. Was diagnosed with tn2 via mri scan few years ago. I never had much trouble odd ache pain but other day came on real bad after biting hot food started it off. Also battling with sciatica lower back pain as well. This tn make me tired and has been very painful that I half cried with the pain n went to hospital all she suggest was pain killers.on pain killers already.only had two days of it n had enough already. How do peep cope with this as I feel alone with the pain as no one else I know has this condition?

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    Replies
    1. I didn't read your blog all the way through, not because it isn't well written {it is}, but because I am all too familiar with your horror. I have had trigeminal neuralgia for 10 years. I have refused all interventions,any cutting {even roots of teeth}. I get acupuncture once a week and cook the chinese medicine every day as prescribed.It is slow, it takes patience and commitment and yes, I am a bit better.

      Delete
    2. good day everyone am Sarah Wilson from France, i have been totally be cured from a deadly diseases called Fibrodysplasia Ossificans Progressiva {FOP} from a great herbalist sakura, he has brought happiness to my life.
      i came to know about him on internet when taking a research on {FOP} cure,i found a post of David Clara testifying about the great work of this herbalist Doctor,that was when i got to know about the Herbalist Doctor ,i make contact with him and i told him my problem,we made a little conversation and send me his herbal medicine through {EMS DELIVERY SERVICE} few weeks i receive the medicine from the (EMS) at my door step.
      i use the herbs as the herbalist Doctor instructed me to,after some days of taking the herbal treatment all the pain was gone and my back bone became normal.
      herbalist sakura has restore my life .
      if any of you out there leaving with (FOP) please contact herbalist via mail drsakuraspellalter@gmail.com or Whats-app +2348110114739
      You can also mail me for more information sarahwilson894@outlook.com

      Delete
    3. Hello viewer’s
      I don’t have much to say there are so may scammers going on online so we cant detect the real herbal medicine doctors. Thank GOD for leading me, please don’t ignore this post is real Dr Emmanuel, is a real herbal Doctor, he cured me from Herpes virus, i am living so happy and free , i was fully recovered within 4 weeks of usage of dr Emmanuel herbal medicine ,please viewers out there that have any deadly disease don't fail to contact him via his email; nativehealthclinic@gmail.com or WhatsApp/Call: +2348140073965 thanks once again to dr Emmanuel GOD bless you abundantly

      Delete
  2. I Understand your pain,as I was recently diagnosed with this pain and its great to know that I'm not alone. I know how bad the shocks the burning, stabbing and throbbing, are not only on the cheeks, the forehead, the jaw, shocks to the ear, roof of the mouth and tongue ( I have all of these). I also am trying medications to see which ones are going to help me. Definitely keep writing I think this will not only bring comfort to you but to us as well

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  3. Im sorry to hear about your struggle. IM in the process of being diagnosed with TN now. My GP (with confirmation by an MRI) made the diagnosis but IM going to a neuro this week. Im on neurontin and a steroid. The pain moves for me. Does this happen to anyone else? One day it''ll be no the side of my nose, then the next day the mouth and lip? Ugh. Its sucks.

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    Replies
    1. Yes, the pain moved for me too. Mostly upper right, sometimes lower right, but always right side. I had this for 4 years until resolved in Jan. 2017 by Dr. Raymond Sekula in Pittsburgh.

      Delete
  4. Im sorry to hear about your struggle. IM in the process of being diagnosed with TN now. My GP (with confirmation by an MRI) made the diagnosis but IM going to a neuro this week. Im on neurontin and a steroid. The pain moves for me. Does this happen to anyone else? One day it''ll be no the side of my nose, then the next day the mouth and lip? Ugh. Its sucks.

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  5. I am also 28 and diagnosed in July of 2013. It is very refreshing to find someone like me. I have experienced chronic pain since the spring of 2013, but most recently the pain has worsened to a new level. I also suffer from migraines and it has been a constant double whammy. My neurologist started me on a new medicine regiment just three days ago and I am interested to see if it will help. Thank you for being brave enough to share your story and journey!

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  6. Hello, I am a sufferer of trigeminal neuralgia and it gets me in my lower left jaw. I have never experienced anything like this in my life, I am 73 and the unpredictable nature of the attacks that gets me down. I appreciate others talking about it as it can be a very lonely experience but I find that talking to people who have this beast makes it a little less so. I can appreciate that people that have never experienced it have difficulty understanding.
    I have suffered with PTSD for the last 30 years and that also is hard to explain to people. I just hope to be able to keep up conversations via this site to enable some outlet for the frustrations these things foster. To all fellow sufferers I just say please talk about it when you feel the need to as this can act like the relief valve on a pressure cooker.

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  7. I have just discovered something that may be a coincidence but I have to pass it on. I was having a bad attack this morning (Friday) and I couldn't eat, speak or chew and anything that meant moving my mouth. I had my tablets, 10mg endep, 60mg cymbalta, 2x30mg panadeine fort and after about 40 minutes I decided to mow our back lawn. The increase in circulation through a bit of physical effort and the attack lessened and then disappeared. My theory is through increasing circulation it distributed the medication faster through my blood stream and hence the relief. Just a thought as anything that might help is worth a try.

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  8. My TN1 started in late October 2016. Since my pain was in the lower jaw, my endodontist provided the initial diagnosis and , by the way, he did not pull any teeth. Referred me back to my primary care physician (PCP) who referred me to a neurologist. I live in Connecticut and choose to go to Tuffs Medical Center in Boston under the care of Dr. Julian Wu, the best decision in my life. I met with Dr. Wu on December 14, 2016 and on December 30,2016 I was in the operating room where Dr. Wu performed a Microvascular Decompression (MVD). This is February 2, 2017 and not a single pain since. As others who have TN1, the pain I was experiencing was on a scale of 1-10 a 10 every time. Medication was of no value, I was on 400mg of carbamazepine 3 times a day. I cannot thank Dr. Wu and his staff enough for the care they provided. The care was exceptional, beyond expectations. Just my story.

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  9. I had TN from 2013 until January 2017. Like others on this site, the pain was unmanageable and unbearable.

    The doctor who finally helped me was Dr. Raymond Sekula at UPMC in Pittsburgh. I highly recommend him.

    If you want more detail on my story:

    I am 47 year old female. My TN started in 2013 at age 43. I had intermittent pain at first which I thought was a dental problem. Through 2013 and 2014, I had dental work and 4 unnecessary root canals, all paid for out-of-pocket.

    Throughout 2015, the pain became so severe, it was hard to function. Horrible shooting pain in upper jaw, waves of electric-like shocks, the whole bit. Some attacks lasted for hours and were completely traumatic.

    In Nov. 2015, was finally diagnosed with TN. Started oxcarbazepine which brought immediate relief. But quickly developed resistance to oxcarbazepine and had to increase the dose until I experienced unacceptable side effects and it really no longer controlled the pain.

    June 2016: had microvascular decompression with local surgeon. It helped, but didn't resolve the pain completely. Still needed an unacceptably high dose of oxcarbazepine.

    January 2017: consulted with Dr. Raymond Sekula at UPMC in Pittsburgh. He did a glycerol rhizotomy. I have had NO PAIN since. I take no meds.

    TN pain is unbearable. If you are suffering from it, I highly recommend Sekula in Pittsburgh. He does many MVD surgeries, glycerol rhizotomies, and consultations. And I wish you well.

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  10. Dear Sarah,
    Hope you are better now a days. I have tried all meds also the only that works a bit is nortriptyline 150mg. I decided to have an MDV i will post news about it on my blog. Feel free to comment there is also a lot of info.
    Tale care
    Pierre
    https://mytrigeminal.wordpress.com

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  11. I have suffered from TN since 2010. I underwent a gamma knife procedure after only 6 weeks of diagnosis. Was pain free until 2015 when it returned sporadically and then daily. I have since undergone a second gamma knife and since March 22nd have been pain free. This procedure, although not permanent, is effective for a few years.

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  12. I have suffered from TN since 2010. I underwent a gamma knife procedure after only 6 weeks of diagnosis. Was pain free until 2015 when it returned sporadically and then daily. I have since undergone a second gamma knife and since March 22nd have been pain free. This procedure, although not permanent, is effective for a few years.

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  13. I just read a link above yours that mentioned a treatment that seemed to work on some people which seems too good to be true; namely vitamin B12 and maybe 2.
    Also I'm somewhat convinced that fibromyalgia is the result of a cervical and Lumbar mild disc bulge combined; with symptoms developed overtime. This could be corrected if I'm right via physical therapy (like @ texas migraine clinic by jeff turner, maybe find the exercises on youtube?) or other means. I've even heard of some people getting help from of all things cheap generic Mucinex!
    I hope I'm not giving you false hope. I have less extreme constant headache symptoms myself which I've been looking into for a while now, among other things.
    And yeah, Dr's generally stink to put it mildly.

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  14. hi everyone,
    i am 46 and diagnosed occipital neuralgia one week ago.. i know it is not TN but they both similar though.. i wonder if these neuralgias can or cannot be treated.. my doctor gave me lyrica.. what do u say ? shall i suffermit as long as i live ?
    thnx for your consideration
    best

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  15. Hi -- I've had TN for 7 years off and on. There's been 3 separate major ocurrances. The first break lasted 3 years, the second break lasted about a year, the last break had lasted 14 months. The latest reoccurance happened yesterday rubbing my head, then today had a major attack in the shower. I've been on meds the whole time and since it's the weekend increased them myself until I hear from the neurologist office on Monday. The whole thing stinks. The pain is unbearable. I was having 40-50 attacks during the day at the hieght of my last one. Tired of the pain.

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  16. As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
    My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and he left the contact of the doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

    ReplyDelete
  17. TN is traumatic to say the least I am 64 and have a story to tell because at least I discovered why I have this problem and I have healed it! Where I am concerned It is not caused by an artery pressing on my nerve! Read my story please and I pray it helps Someone with TN.
    Gay Chappuis “mcgranny.blogspot.com

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  18. Trigeminal Neuralgia Day at the Georgia Aquarium
    Hosted by: Jim Robinson MD
    When:Sunday, October 7, 2018
    from 2:00 PM to 4:00 PM

    Georgia Aquarium
    225 Baker St NW
    Atlanta,, GA

    I wanted to share this. Dr. Jim Robinson is a Neurosurgeon in Atlanta GA is amazing! He helped so many get their lives back. There are options people don't give up.

    ReplyDelete
  19. good day everyone am Sarah Wilson from France, i have been totally be cured from a deadly diseases called Fibrodysplasia Ossificans Progressiva {FOP} from a great herbalist sakura, he has brought happiness to my life.
    i came to know about him on internet when taking a research on {FOP} cure,i found a post of David Clara testifying about the great work of this herbalist Doctor,that was when i got to know about the Herbalist Doctor ,i make contact with him and i told him my problem,we made a little conversation and send me his herbal medicine through {EMS DELIVERY SERVICE} few weeks i receive the medicine from the (EMS) at my door step.
    i use the herbs as the herbalist Doctor instructed me to,after some days of taking the herbal treatment all the pain was gone and my back bone became normal.
    herbalist sakura has restore my life .
    if any of you out there leaving with (FOP) please contact herbalist via mail drsakuraspellalter@gmail.com or Whats-app +2348110114739
    You can also mail me for more information sarahwilson894@outlook.com

    ReplyDelete
  20. I was diagnosed with stage 3 breast cancer in August of 2010. A precious friend told me about Dr Itua Herbal Center in West Africa,She gave me his contact number and email address,I contacted him quickly so he give me guaranty that his herbal medicine will cure my cancer and i will be heal forever I said Okay.I ask him about the process for the cure,he ask me to pay for the fees which i did and within 7 working days he sent me the herbal medicine then he instructed me on how to drink it for two weeks to cure.I told Gomez my friend about the herbal medicine so he gave me go ahead to drink it.So after drinking it for two weeks i was cured I'm so grateful and i promise i will recommend anyone with cancer to him and that what i'm doing.Dr Itua Herbal Medicine makes me believes there is a hope for people suffering from,Parkinson's disease,Schizophrenia,Cancer,Scoliosis,Fibromyalgia,Fluoroquinolone Toxicity
    Syndrome Fibrodysplasia Ossificans Progressiva.Fatal Familial Insomnia Factor V Leiden Mutation ,Epilepsy Dupuytren's disease,Desmoplastic small-round-cell tumor Diabetes ,Coeliac disease,Creutzfeldt–Jakob disease,Cerebral Amyloid Angiopathy, Ataxia,Arthritis,Amyotrophic Lateral Sclerosis,Alzheimer's disease,Adrenocortical carcinoma.Asthma,Allergic diseases.Hiv_ Aids,Herpes,Inflammatory bowel disease ,Copd,Diabetes.
    Here Is His Contact Info......[Email...drituaherbalcenter@gmail.com/Whatsapp...+2348149277967]

    ReplyDelete
  21. As a sign of gratitude for how my husband was saved from neuralgia, i decided to reach out to those still suffering from this.
    My husband suffered neuralgia and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony of so many people who was cured from neuralgia. and so many other with similar body problem, and they left the contact of this doctor who had the herbal cure to neuralgia. I never imagined neuralgia has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in one months he was fully okay even up till this moment he is so full of life.neuralgia has a cure and it is a herbal cure contact the doctor for more info on drwilliams098675@gmail.com on how to get the medication. Thanks for reading my testimony .

    ReplyDelete
  22. ALL THANKS TO DR WILLIAMS
    I was diagnosed of neuralgia in 2011, I have tried all possible means to get cure but all my effort proved abortive, until a friend of mine introduced me to a herbal doctor , who prepare herbal medicine to cure different kind of diseases including neuralgia , when i contacted this herbal doctor via his email, he sent me the neuralgia herbal medicine via courier service, when i received the herbal medicine he gave me step by step instructions on how to apply it, when i applied it as instructed by Dr Williams i was totally cured from this disease within 1 months of usage. any body with similar problem can Contact this great herbal doctor via his email drwilliams098675@gmail.com for advice and for his product,and thanks to you admin for such an informative blog.

    ReplyDelete
  23. I am bold enough among many others to state that there is now a potent cure to this sickness but many are unaware of it. I discovered that I was infected with the virus 3 months ago, after a medical check-up. My doctor told me and I was shocked, confused and felt like my world has crumbled. I was dying slowly due to the announcement of my medical practitioner but he assured me that I could leave a normal life if I took my medications (as there was no medically known cure to Herpes). I went from churches to churches but soon found that my case needed urgent attention as I was growing lean due to fear of dying anytime soon. In a bid to look for a lasting solution to my predicament, I sought for solutions from the herbal world. I went online and searched for every powerful trado-medical practitioner that I could severe, cos I heard that the African Herbs had a cure to the Herpes syndrome. It was after a little time searching the web that I came across one Dr Itua(A powerful African Herbal Doctor), who offered to help me at a monetary fee. I had to comply as this was my final bus-stop to receiving a perfect healing. My last resolve was to take my life by myself, should this plan fail. At last it worked out well. He gave me some steps to follow and I meticulously carried out all his instructions. Last month, to be precise, I went back to the hospital to conduct another test and to my amazement, the results showed that negative,Dr Itua Can As Well Cure The Following Desease…Cancer,Hiv,Herpes, Hepatitis B,Liver Inflammatory,Diabetis,Fribroid,,Non Hodgkin Lymphoma,Skin Cancer,Uterine Cancer,Prostate Cancer Dercum,Infertility,fibromyalgia,Get Your Ex Back,Als,SYPHILLIS,Genetic disease,Epilepsy, Parkinson's disease..You can free yourself of this Herpes virus by consulting this great African Herbal Doctor via this e-mail: drituaherbalcenter@gmail.com or call and whatsapp him on +2348149277967 He will help you and his herb medication is sure. he has the cure on all disease .You can talk to me on INSTAGRAM..tashamoore219....

    ReplyDelete
  24. I am Sophie from Canada, I once suffered from a terrible and chronic neuralgia ,since 30years now , the doctor told me there was no permanent cure i was given medications to slow down its progress, i constantly felt my health was deteriorating as i constantly go out of breath,and this illness was really terrible especially when am going out with my friends, i have this constant disorder for about 30 years, this was really a terrible illness ,on thin one day that i was going through the internet,and i came across a post of Mrs kate on how her husband was been cured from neuralgia through the help of Dr Williams herbal product, I contacted this herbal doctor via his email and explain everything to him and make purchase of his product,few days later he sent me the herbal medicine through courier service, when i received the herbal medicine, i used it for 1 months as prescribed by Dr Williams and i was totally cured within those week of usage,on thin now i have not experience any sign or characteristics again . for more information you can email him on drwilliams098675@gmail.com for help

    ReplyDelete
  25. Hello everyone out there, I'm here to give my testimony about a herbalist doctor who helped me. I was infected with HERPES SIMPLEX VIRUS in 2011, I went to many hospitals to heal myself but there was no solution, so I was thinking how I can get a solution so that my body can be well. One day I was in the river thinking about where I can go to get a solution. so a lady walked towards me telling me why I'm so sad and I open everything by telling her my problem, she told me she could help me, she introduced me to a doctor who uses herbal medicines to cure the SIMPLEX HERPES VIRUS and gave me your email, so I sent you an email. He told me everything I had to do and also gave me instructions to take, which I followed correctly. Before I knew what was happening after two weeks, the SIMPLEX HERPES VIRUS that was in my body disappeared. therefore, if you also have a broken heart and need help, you can also send an email to {oliha.miraclemedicine@gmail.com}or whatsapp him number: +2349038382931 or Facebook page https://www.facebook.com/drolihamiraclemedicine/
    Contact him today and he will have a testimony ... Good luck!

    Dr. OLIHA also cures:
    1. HIV / AIDS
    2. HERPES 1/2
    3. CANCER
    4. ALS (Lou Gehrig's disease)
    5. Hepatitis B
    6. chronic pancreatic
    7. emphysema
    8. COPD (chronic obstructive pulmonary disease)

    ReplyDelete
  26. Hello viewer’s
    I don’t have much to say there are so may scammers going on online so we cant detect the real herbal medicine doctors. Thank GOD for leading me, please don’t ignore this post is real Dr Emmanuel, is a real herbal Doctor, he cured me from Herpes virus, i am living so happy and free , i was fully recovered within 4 weeks of usage of dr Emmanuel herbal medicine ,please viewers out there that have any deadly disease don't fail to contact him via his email; nativehealthclinic@gmail.com or WhatsApp/Call: +2348140073965 thanks once again to dr Emmanuel GOD bless you abundantly

    ReplyDelete