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.
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.
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!
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.
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!!!
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 
Yes I have constant pain as well as sharp pain. I have been taking ibuprofen but it barely keeps it at bay, so today my doctor has put me on Tegretol. I am only prescribed 200mg a day though. I haven't had a confirmed diagnosis from a neurologist yet but the doctor is sure I have TN.
I was told to take ibroprufen also which didn't touch it. then I went back and was prescribed tromodol. which is tegretol I did advise the doctor about trigeminal neuralgia but he said he didn't want to go down that route.when I went back again I was given carbamazepine .this is my second attack of nerve pain but this drug is working.i haven't been to a neurologist but this drug is helping.dont suffer in silence tell the doctor about the pain and how almost anything triggers it.i have .lost half a stone in weight just by not been able to eat a proper meal
if you have tn no painkiller will touch the pain. please don't suffer.the first time I went to my dentist and after three courses of anti biotics I asked him to pull the tooth which I was sure was infected.i wish I knew then what I know now
I apologise I think I think tegrotol are the same as carbamazepine but am in a bit of pain right now I thought these were working.but ?
Yes, do the homework. These drugs are temporary most of the time and often make one crazy, I was on neurontin, stopped working after one month, then oxcarbazepine...worked great on pain but I couldn't function, felt horrible. So did my own research and found the guy here that is the expert on TN. He did what believes is best...radio thermal surgery (using a needle they burn the nerve rendering it harmless. All TN pain is gone ( for now anyway). Nerves CAN grow back and may have to repeat. That goes for any surgery at this point. If MS is a possible cause, gamma knife is out. I was able to go back to my life the next day...very cool! If the nerve grows back they do it again.
I had such a horrible time on the drugs that I will do everything to avoid it! For some reason, drugs are the preferred starting point in the US. Not so in socialized countries. I had to go out on my own to get away from the drug pushing.
Don't be afraid to do your own research. Be tourism advocate and you will find your answers.
Well I have been to the doctors again and now I am taking Tegretol 400mg and co-codamol and naproxen. It is stopping the pain but then I am half asleep, if not asleep! I still have two and a half weeks to go before I see the neurologist. Anyone know what tests they do to confirm it (in UK)? and whether there is any hope of being off drugs here?
Hi Lisa,
The only test they have is your word. Describe the symptoms. Then tell them you can't handle the side
effects of the drug and want to see a neurosurgeon. Once you see the neurosurgeon discuss the surgery
options ( I suggest you do your own research now on which option looks the best for you and ask about it at the appt. ).
The doc might want to do an MRI of your brain to rule out MS. There are two more surgical options if you don't have MS.
There is decompression surgery and gamma knife.
If MS is a possible cause ( mine is questionable), there are several other options.
I did the radio thermal frequency surgery where they use a needle to burn the nerve. Bottom line, if the
drugs are making you nuts or disfunctional as they did me, there are about 5 options to get off drugs.
Personally I hate those drugs!
Make it happen!
MRI testing can be done to rule out secondary causes, such as MS mentioned above. Other neurological tests can be done to rule out other causes such as compression of the nerve for example. However a good patient history is as important for a doctor to get the diagnosis right.
Tarun (hospital pharmacist)
This is my third day on carbamazepine and I can honestly say they are working. I am still getting an occasional twinge from my gum to my eye but it is working no (pain ) today. As for tests do you think I should ask my doctor for one. I have to go back in 2 weeks for results for a blood test because I have been put on these drugs
It took 3 doctors appointments and 2 of them was me telling them what I had .How many for a ms test or a MRI .The doctors don't know enough about this infliction
Hi Mathew,
Here is what we must do, all of us must do. Look on line for the trigeminal neuralgia specialist in your location. I had to
do that because the neurologist I was seeing plus another couple of neurologists I had contact with made it
clear to me that no one REALLY knew enough for my satisfaction. Just a lot of guess work and drugs. Very sad.
Would rather they were honest about their lack of knowledge ( and perhaps lack of interest) regarding TN.
Drugs they will give you. Real help, most likely not. You must find the neuro surgeon who not only knows ab
out TN but also has treated ( done TN surgeries) on hundreds,perhaps, thousands of people...who have a track record and experience.
This advice comes from TN patients and specialists. I used the info to help me.
Also if the drugs work and you can tolerate it, then hallelujah, feel free to stay on them as long as you like. I
suggest having someone lined up for when the drug stops working which can happen or for when you deci
e you don't want to be on drugs. Everyone is different. Just have someone in mind in case you need a surgery.
You are the boss of your own body, no one else!
Just for the record my neurologist was extremely unhelpful. He argued with me about my desire and need to get off the drug and when I asked him for the name of the neurosurgeon who could help me, he said "that isn't necessary" and wouldn't give me the info. So I got it for myself and found the TN specialist in my area. Now I am pain free and off drugs. These drugs take awhile to wean off of, but you may know that already.
My tn was diagnosed 3yrs ago, stabbing and electifying pain in one side of face then it went away, been back a few times since,also i have had a numbness in the same side of the face for 19 yrs prior to the pain starting . I had an mri of the trigeminal nerve root and it was found that i was missing csf in the meckels cave and my myelin sheath is dry so messages are not passed through the nerve correctly was also told by my neurologist and the radiologist they had never seen this before, i am a mystery, it doesnt help the pain though. been painfree for 9 months until yesterday back on gabapentin i think and no talking. Is any one else a mystery.
I am in my forties and to think this pain is going to come and go for the rest of my life is daunting.
I am 33. I was diagnosed about year and a half ago. I am currently in the middle of my first break through flare up of pain. I am in terrible pain and nothing is helping. I can't eat or even think straight. Spent most of the day curled up in a ball crying ( I have no pain tolerance at all). The pain sessions are lasting for hours before I get relief. Relief lasts for 30 minutes to an hour. Then the pain comes back. Can anyone help me? I live in the us and thanks to our new health care program I can't afford to go to the doctor. Any home solutions that I haven already tried? Heat isn't working, I have upped my carbamazipine and gabapentin levels already. Plz help. Here come the pain again.
Hi, when I had this I used co-codamol and naproxen for the pain, but ultimately it only went when I went to the dentist and she put a sedative dressing into my wisdom tooth. Really you need to see a neurologist and have an MRI scan to see what is causing it. They found mine was an acoustic neuroma (benign tumour) 3cm big and I am waiting for surgery to have it removed.