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!

16 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?

    ReplyDelete
    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. 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

    ReplyDelete
  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.

    ReplyDelete
    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.

    ReplyDelete
  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!

    ReplyDelete
  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.

    ReplyDelete
  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.

    ReplyDelete
  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.

    ReplyDelete
  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.

    ReplyDelete
  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

    ReplyDelete
  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.

    ReplyDelete
  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.

    ReplyDelete
  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.

    ReplyDelete
  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

    ReplyDelete