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trigeminal neuralgia

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I have been diagnosed with trigeminal neuralgia, what a painful debilitating condition. However my GP put me on gabapentin and the symptoms are easing now, i hope to be pain free in a few more days.

I couldn't think straight because of the pain but i am now hopefull, i know it isnt a cure but at least the relief is fantastic.

3 likes, 61 replies

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  • francina
    francina

    Posted

    Hi, the drugs you mentioned above give you relief from pain but on a temporary basis. It does not address the root cause of the condition. What if you can make your nerves less sensitive to the triggering factors? (B)Niargim tablet(/B) is an ayurvedic formulation which is believed to have natural anti-inflammatory and pain relieving properties. Homeopathic remedies such as (B)Trigeminal neuralgia CM(/B) decreases the sensitivity of the nerves and helps it to stop reacting to stimulus. This remedy also decreases the tingling and numbness of the nerves. Thus you can make use of advanced natural herbs to lessen you pain without any adverse effects.
  • ubeehappy2
    ubeehappy2

    Posted

    Hi

    Having had Trigeminal Neuralgia since 2010 I have been taking Gabapentin in various doses which has eased symptoms and reduced the pain. The only time I increase is during dental treatment as this seems to trigger pain.

    Once you have experienced this deliberating condition anything that takes the pain away without too many side effects is a blessing.

    I understand advocating homeopathic alternatives as an option but knowing the timescales it takes to either start taking medication or reducing its a big risk to take - if it does not work you have insufferable pain.

    My concern would be if ever the prescribed medication in its highest dosage no longer had effect.

    But hey after being in a terrible place when first diagnosed to being in a place of living my life I feel blessed and will live my life to the full.

    You have to do what is best for you!

  • alicot
    alicot

    Posted

    Hi,

    I am on neurontin, 300mg four times a day...for the last 2-3 weeks for TN. Has helped tremendously until tonight, I had breakthrough pain....first time since being on this drug. Should I up the dosage? Change to a different drug? Ignore and keep going! Is the neurontin wearing off? These are my questions. I am waiting to see if I can have decompression surgery but need this pain gone until that time. Any advice from TN experienced people would be wonderful. I am sorry we all have this to deal with.

  • IsurvivedTN
    IsurvivedTN

    Posted

    I'm going to tell my story so it will be kind of long, but has a great end ing..promise;-). In 2011, at age 29, I noticed a sharp pain when I brushed my teeth. At the time, like many others, I assumed it was dental related. I went to the dentist and they found nothing wrong. As the weeks went on, the pain started happening when I talked, brushed, washed my face, clenched my teeth, slept, smiled, if the wind blew hard, etc. It was the WORST pain of my life. It felt like an electric shock going off in my the left side of my face by my jaw. Sometimes the pain would be just a quick stab, and other times the pain would vibrate through my face and all I could do was stop all motion and wait until it passed. I would even wake up out of my sleep sometimes from the pain if I accidentally turned on my left side. The pain would last for weeks then go away for a week and I thought it was over. BIG MISTAKE! It came back with a vengeance.

    After many painful days and nights, I started looking up my symptoms on the internet (yeah for Google) and the same diagnosis kept coming up..Trigeminal Neuralgia. I was confused because although my symptoms matched, it said that this disease usually showed itself in older individuals and I was only 29. I made an appointment with my physician and after cruelly poking my facing with his finger after I told him my symptoms, he confirmed that although it was rare for my age, I had TN. He prescribed me a steroid prescription and sent me on my way. No further explanation. If I had not already researched this, I would have been lost. So I took the pills, and besides making me gain a couple pounds, the pain remained. By now, I had researched so much about TN, I felt like an expert. I called my physician and asked to be referred to a Neurologist.

    Long story short on this part, Before the Neurologist saw me , he sent me to get MRI which was clean so no MS and he spent all of three minutes seeing me, told me I had TN, gave me a prescription for TEGRETOL, and sent me on my way. No further explanation about my disease. He failed to tell me that the Tegretol would make me CRAZY!!!!!!!!! I am a teacher and the Tegretol had me so nuts, some days I couldn't even function. I have a 2 1/2 yr old and between the Tegretol and pain, I'm sure I was a pain for my child.

    The Tegretol did help a little but I could not see myself having to live the rest of my life on Tegretol. It would have been HELL!!! I had already researched Gamma Ray treatment and surgery to cut skull open and put something in between nerve and blood vessel. Both did not appeal to me.

    THIS IS WHEN IT GETS GOOD!!! I live in Alabama (US) and one day when I was researching, I saw that a Neurosurgeon in Birmingham, AL, Dr. Swaid N. Swaid does something called CYBERKNIFE TREATMENT. CYBERKNIFE is a non invasive radio surgery that is used to treat everything from cancerous and non cancerous tumors and TRIGEMINAL NEURALGIA!!! It beams a high dose of radiation to the area that precisely goes to the spot needed. I felt like this was my only hope. I called to make an appointment and luckily, a referral was not needed since my Dr. and Neurologist were of no help. I went to see Dr. Swaid the next month and he was the first Dr. to sit down and explain exactly what I had and the treatment options. Because of my age, he thought the brain surgery was better but I told him that I would rather do the Cyberknife. The brain surgery, besides be invasive, would make me have to take 2-3 weeks to recuperate while Cyberknife, I would go into treatment 1-5 times, depending on my xray of my nerves and lay on the table for 45 minutes and left the robot do it's thing and get up and be just fine. No pain, no cutting!

    Made my appointment for Cyberknife, went in to talk to Radiologist who told me Cyberknife was just as good as the invasive method. He actually drew me a picture to describe what was going on in my face and told me that I was suffering from Trigeminal Neuralgia in my 3rd trigeminal nerve (the one by the lower jawline). After they looked at my

    Xray, they decided I only needed one treatment. They made a mold of my face that is like a net they had to put on my face to keep me prefectly still. I laid on the table, listened to the music of my choice, and listened to the robotic arm buzz over my face for @ 40 minutes. Got up and was on my way. I was warned that the results would not be

    immediate. The radiation slowly kills the nerve that is being affected. But month after month, sure enough, the pain became less and less. I went to see Dr. Swaid every 3 month for the next 9 months. He said by the 6th month, if the pain was gone, most likely it would be gone forever. The only side effect I have is that sometimes when I chew on that side of my face, because the nerve was killed, I get a little painless tightening in my jaw (like lock jaw) for a few seconds. I laugh because I'll take that anyday over TN and it only happens usually when I chew something really tough on that side

    I have been pain free for about a year now but I'll never forget the worst part of my life. I encourage anyone dealing with TN TO DO YOUR RESEARCH and do what is best for you. If you have a Hospital that offers Cyberknife in your area, I encourage you to look into it. Never give up hope that you can't overcome this and know that there are others that have had to deal with this too....You DO NOT have to settle for taking medication for this disease for the rest of your life! RESEARCH, RESEARCH RESEARCH. God Bless!!!

    • matt6288
      matt6288 IsurvivedTN

      Posted

      I know that this is a long shot but... Is there any way that I could contact you? I too live in Alabama and honestly I feel like the HULK about to explode because the pain is so terrible. It happens on both sides of my face but never at the same time. When it gets real bad I also experience pain in my collar bone and it feels numb/ghostlike all the way to my fingertips. I get a kind of restless leg syndrome but that may be due to with adrenaline or something because there is nothing that I can do to get it to go away. I just have to tough it out and sometimes that can take days.
    • bamanana
      bamanana IsurvivedTN

      Posted

      Your story has touched my heart. My mother has trigeminal neuralgia, she was diagnosed in 1993. She was in such pain that she was to the point of committing suicide. She had been on so much medicine and some eased the pain a little for a while but the pain continually came back and worse. In June of 1993 a de. Zeigler of Carraway hospital done a procedure on her where he went I n through the roof of her mouth an injected the nerve. It helped for a while and he told us at that point it could last 6 months 6 years r it could completely go away but for the past several years it has continually gotten worse. I've been researching for a excellent dr. To carry her to so I'm so thankful that I seen ir post I'm definitely going to try and get her in with him. We only live 50 miles from bham so this is the most wonderful news I've heard about. Thank u so much for sharing ur story because ur symptoms is the same exact as my mom's.
    • akil41128
      akil41128 IsurvivedTN

      Posted

      I have the same exact electric shocks. I cannot even eat, and now neurontin has all of a sudden stopped working. I am so glad you put your story out there, can you tell us if you are still pain free? I am definitely going to look into cyberknife
    • IsurvivedTN
      IsurvivedTN matt6288

      Posted

      Wow. I didn't experience those other symptoms. It's been a few years now and I'm still pain free. If your in Alabama, I'd suggest you find a good neurosurgeon. The one I found was Dr Swaid in Birmingham and he was great.
    • Tnhurtsme
      Tnhurtsme IsurvivedTN

      Posted

      Hi are you still pain free from the trigimal neuralgia I've been looking into cyberknife just curious how long it lasted for you

    • Jeej
      Jeej Tnhurtsme

      Posted

      Hi - I read your question to IsurvivedTN and thought I'd tell you my experience. I've had th for 14 yrs. I chose cyber (gamma) knife over invasive surgery (MVD) because I was fearful. The 1st CK Surgery was very successful. I was painfree for 3-3 1/2 yrs. Still nit keen on the invasive surgery, I opted for a second one. That did not work out at all. I went on gabaoentin. Due to break through pain I increased dosage until I reached the limit on thst. I then researched my options and chose to go with MVD. It was not successful. I was in worse pain over a broader area involving another branch of the nerve. If I could do over I would go straight to microvascular decompression to increase odds of success and go to cyber knife after that. Fortunately the meds i take work well (oxcarbazapine, baclofen and norco). I hate relying on meds but thank goodness they work. Good luck to you. Feel free to message me back.

    • renay23174
      renay23174 IsurvivedTN

      Posted

      I am going to share your story on my FB page. I went to dr swaid and he found the compression. Looking at my options.
  • brenda129
    brenda129

    Posted

    After 6 weeks of pain I've just be diagnosed with TN. I had a check up at my dentist for very sensitive teeth on one side, which was clear, I've had two lots of antibiotics for a slightly pink ear but it made no difference. I

    am now on 400mg of Tegretol a day, 200mg morning and evening. When you read about the sypmtoms of TN it says the pain comes and goes many times through the day but between attacks you are clear of pain, my pain is always there and travels from my ear to my jaw throughout the day. I am also taking ibuprofen to

    relieve the pain which usually works for a few hours. Does anyone else have constant pain and well as

    some sharp pain question

    • Lesliebeall2
      Lesliebeall2 brenda129

      Posted

      Brenda, II have been diagnosed with this TN for like 6 weeks. It's the worst pain I've ever had, to tell you the truth. I'm on 1200 mg twice a day of neurontin twice a day, 200 mg of tegretol twice a day and magnesium as well as butalbital x 2 every four hours. None of those things are helping me much. I have the constant pain like you do. It's about a 5 on the pain scale most of the day and a 10 for at least 5 hours a day where I'm crying and ready to bang my head on the wall. It's horrible. I've tried ice packs heat packs, chiropractor, vitamins, teas, epsom salt baths...you name it. I finally have an appt w a neurologist in 2 weeks. That may as well be a lifetime from now. If you've found a remedy, can you share it with me please. Thank you.

      Leslie

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