Would like to report that the pain has for the most
Part, subsided. Small headache left but that is completely manageable compared to what it was. Didn't make it to the doctor however as they were closed when I got of work today. I am still new to all of this and not very good at speaking up at the doctors. But getting much better. This forum has helped so much with all the info and feedback. So thank you to all. Just putting it out in to the universe.
Hi I also had both sides for a while and my neurosurgeon said that was so rare. They put me on lamotrigine and after a while the pain disappeared. 2 weeks ago had the glycerol injection under ga & struggling with aftermath especially my right eye so I am to have another MRI scan. Trust you get an answer & speedy relief. It is definitely a thief of your life.
Well, now you will think i'm crazy but i control my TN with Lysine (sometimes called l-lysine) which is used for Cold Sore Relief 500mg twice a day every day whether i have pain or not,Zovirax (also for cold sores) put on at least 3 times a day when i am getting any pain at all (contains Aciclovir 5%)) no chocolate at all (makes it flare up), Tegretol 200mg twice a day and peppermint tea often. If I get a flare up I take Codapane Forte which contains paracetamol 500mg and Codeine Phosphate 30mg. It knocks me out but when i wake up the pain is manageable. I live in Australia though where the medicine is damn near free and the doctor is about $20 bucks a visit. Hope some of this is of a help to you. Move here maybe.
H!!
Gabapentin is a safe and an effective pain reliever, bt it does just that, ie relieves pain by numbing your nerves senitivity. I a glad it is giving you the relief you need, but you maybe look into something that in th elong term helps repair your nerve fibres for permanant relief. Surgery is one option, bt there are alternative therapies that can help with the same
Thanks for the advice about the chocolate.
Didn't realize it could be a trigger.
um, i am currently using Codapane which you probably dont have in the UK because its a brand name but its made of Codeine Phosphate 30mg and paracetamol 500mg. Its the Codeine which helps i think but it does make me very spacey but who cares if it takes away the pain.
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.
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
Please let me know of any home remedies that ease the pain. I am on neurontin, tegretol, a migraine narcotic medication and amitryptiline and it barely touched the pain I'm feeling. Thank you
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.
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
Yes, thankfully I am still pain free.
I'm glad my story could help. I hope everything works out
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.
Hi are you still pain free from the trigimal neuralgia I've been looking into cyberknife just curious how long it lasted for you
Hello,
I was diagnosed with trigeminal neuralgia at the age of 22. I lived with for over 12 years, I was on from 200mg all the way up 1600mg/day. I went for cyber knife surgery at the Boston medical center. I was amazed how easy it was. I was actually pain free and off my meds for about 6 months. They moved me to 1600/mg of tegretol it seemed my body got use to the dosage. I saw a fox 5 episode where dr goodman a neurosurgeon from st Luke's helped this lady by performing MVD. In my case I had no choice I couldn't lick my lips an had to take Percocet to function. I decided to go under the knife on September 29, 2013. I am currently pain free and off my Meds, I have a very slight and I mean slight numbness at the top of my lip where my trigger spot was but if I bite my lip I can feel it. I will takes his over that pain any day. I wanted to wait for my 5 year mark in order to post on the forum. I thought it would share my story.. Wish you all the best of luck....
Did you have TN 1 what was your cause for your pain I've been thinking of cyberknife but I don't think it will last very long I have trigeminal neuropathy from an ear infection just curious
Hello,
I had a chipped tooth and went to the dentist and he gave me a bridge. Dunno why when he could of just capped it. After that about 2 months later I started getting shocks in my mouth. I was diagnosed with atypical trigeminal neuralgia. Before they gave me tegretol my episodes would last anywhere from 5min to 45 min. The pain was like I had 2 live wires and I was touching them together.
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.
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.