1. Community
  2. Brain and nerves
  3. Trigeminal Neuralgia

Trigeminal Neuralgia

Posted , 4 users are following.

elizabeth59172
elizabeth59172

when I read about other peoples TN it sounds like everyone starts out with a bang and it never stops. i have unofficially been diagnosed with TN in April when random zaps on my left side of my forehead started from the cold and randomly. it stayed three weeks and tapered off at the end. six weeks later it came back when i jumped into the water with shocks and stayed with shocks for a week and an earache the next 2-3 weeks with random shocks throughout. 7 weeks later it came back with slight zaps for a week and a constant earache for a week and now earache and sharp pains in temple. always my left side. primary care DR sent me to ENT who sent me to Dentist who sent me to endadontist who said go back to Dr or neurologist. DR now says to go to a new ENT. still no meds but my pain varies. 3 of 10 most of the time with moments of a 6 or 8. I am also waiting for an accupuncture appointment to be made. anyone else with a similar experience?

0 likes, 6 replies

6 Replies

  • rashine32232
    rashine32232 elizabeth59172

    Posted

    Hello Elizabeth sorry to hear about your pain. I know what your going through I had TN for 3 years and the pain was the worst thing a human could experience!! But there is light at the end of the tunnel! Tell your Dr. To start you on CARBAMAZEPINE ITS THE # 1 RELIEF FOR TN I was allergic so Neurontin was my relief! Started at 300 an made my way up to 2700mg that's what it took to have a life! Its makes you sleepy at first but that stops in a couple of weeks. Get a MRI to rule out MS an If you never had SHINGLES then your a candidate for MVD SURGERY!! IT GAVE ME MY LIKE BACK ! PAIN FREE INSTANTLY!! MY DR. WAS JOHN LEE AT PENN MED in PHILLY HE WAS THE PROTEGE of THE MAN WHO INVENTED MVD . CHECK HIM OUT! YOUR WELCOME💋. MAY GOD BLESS YOU

  • Aleitrafromcali
    Aleitrafromcali elizabeth59172

    Posted

    I've had Tn over 7 years. The pain is on my right side. I have TN1 and TN2. Pain has gotten worser over the years. I'm in pain daily, Can't sleep. I get shocks in the rigjt sise of my head and face. That has me in tears. I also get it in my teeth. My face and ears feel like they on fire. Its painful. My lips is extremely sore. I cant be around noise, movement, brushing teeth is painful. Washing my face. It leaves me light headed after the shocks and burning pain. I'm on Tegretol, Gabapenten, Narcos, Imitrex. It don't help much. It cause a big problem in my daily living. I cant do things I use to do. I got some relief for a couple months the first year. It returned with order pain, no relief. Just get worse daily and each episode lasts longer. Sleeping don't help, it wakes me out my sleep causing me to stream and holler and the most excruciating pain. I lost my Job behind this condition. Alot of times I can't talk due to the pain. Because my mouth and lips be sore and also get Electric Shocks.

  • susan33651
    susan33651 elizabeth59172

    Posted

    Hi,

    My experience is quite different. It started in my left eye and over several years it got much more painful and started to affect parts of all three branches of the nerve on the left. Also the episodes got closer together. In the last three to four years it has become so painful that nothing helps, minimum of an 8 but mostly 10+. Two years ago I started Carbamazepine . That as well as the Amitriptyline I was taking for neuropathic joint pains made a big difference. I also have TN on the right side and in all three branches! It's much more painful than the left. I get shocks, stabs, hammer whacks in various areas and a pickaxe in the skull sensation. I get at least 20-30 pains on a good day and every 4-6 weeks a mega pain fest affecting any combination of branches on both sides together. These sometimes trigger migraine attacks. I have a great GP, and I have had MRIs and seen a neurologist.

    You don't mention any medication?! For me the carbamazepine has helped but I feel like I am constantly playing catch up, ever increasing the dose. My kidney function is a bit dodgy, and I have other drugs which can affect kidney and liver function, so that's less of an option now. So back to the docs in a few days. My advice is to get your GP to refer you to a neurologist and start you on carbamazepine. If it works it's fairly conclusive diagnostic proof that you have TN.

    In the meantime try applying something hot rather than cold to the painful area, it helps me. Also, I find pressing really hard on the point of pain helps. Other forum members use turmeric and B vitamin supplements. Try to identify your triggers and avoid them if you can. There is a wealth of information on the Internet, do some research and see if you can find something that you think might help you, and then share it with us, it may be helpful to us too 😊

    Good luck and happy hunting!

    • elizabeth59172
      elizabeth59172 susan33651

      Posted

      thank you. i havent started any medication. it is still tolerable-ish and i want to wait as long as possible. since every time it seems to last three weeks so knowing there is a count down helps. i have started to get some very mild pains on thee right side. i get to try accupuncture on monday. waitong for thr next ENT appointment because it takes 9 months to get into a neurologist here.

    • rashine32232
      rashine32232 elizabeth59172

      Posted

      9 months for nothing!!! Let me save you some time the pain will get worst!! The neurologist will make you an appointment to get an MRI TO RULE OUT MS, ask you about your symptoms and if you ever had Shingles, and prescribe you carbemazepine so you can ask your dr. To do all of thee above! You might need up to 900mg a day i was up to 2700mg just up the dose until you comfortable. I had the MVD SURGERY AND I AM NOW PAIN FREE!! THANK GOD!!!

    • susan33651
      susan33651 elizabeth59172

      Posted

      I would urge you to start medication as soon it starts to become even slightly intolerable, I waited far too long and risked my health with self medicating. I ploughed my way through my husband's supply of Co-codamol 30/500, tramadol, Oramorph, and MST, risking my liver and kidneys by taking doses too close together and too many in a 24 hour period. And I'm a nurse!! When I had the epic attacks involving combinations of both sides and different branches all kicking off together and lasting for 20+ hours, with little respite between the various branches of the nerve being active, and running out of my husband's drugs (he didn't need them anymore by the way!!) I was desperate. The carbamazepine and larger dose of Amitriptyline made the difference between living a life and being an incapacitated wreck stuck to the sofa!

      For most TNers the drugs work really well and for a good long while. Don't dismiss them too quickly, and most side effects are soon overcome.

      Best wishes

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.